Mental He,alth A Report of the Surgeon General DEPARTMENT OF HEALTH AND HUMAN SERVICES U.S. Public Health Service The Center for Mental Health Servides Substance Abuse and Mental Health Services Administration National Institute of Mental Health National Institutes of Health Suggested Citation U.S. Department of Health and Human Services. Mental Health: A Report of the Surgeon General. Rockville, MD: U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health, 1999. For sale by the Superintendent of Documents, P.O. Box 371954, Pittsburgh, PA 1X250-7954 Message from Donna E. Shalala Secretary of Health and Human Services The United States leads the world in understanding the importance of overall health and well- being to the strength of a Nation and its people. What we are coming to realize is that mental health is absolutely essential to achieving prosperity. According to the landmark "Global Burden of Disease" study, commissioned by the World Health Organization and the World Bank, 4 of the 10 leading causes of disability for persons age 5 and older are mental disorders. Among developed nations, including the United States, major depression is the leading cause of disability. Also near the top of these rankings are manic-depressive illness, schizophrenia, and obsessive-compulsive disorder. Mental disorders also are tragic contributors to mortality, with suicide perennially representing one of the leading preventable causes of death in the United States atid.worldwide. The U.S. Congress declared the 1990s the Decade of the Brain. In this decade we have learned much through research-in basic neuroscience, behavioral science, and genetics-about the complex workings of the brain. Research can help us gain a further understanding of the fundamental mechanisms underlying thought, emotion, and behavior- and an understanding of what goes wrong in the brain in mental illness. It can also lead to better treatments and improved services for our diverse population. Now, with the publication of this first Surgeon General's Report on Mental Health, we are poised to take what we know and to advance the state of mental health in the Nation. We can with great confidence encourage individuals to seek treatment when they find themselves experiencing the signs and symptoms of mental distress. Research has given us effective treatments and service delivery strategies for many mental disorders. An array of safe and potent medications and psychosocial interventions, typically used in combination, allow us to effectively treat most mental disorders. This seminal report provides us with an opportunity to dispel the myths and stigma surrounding mental illness. For too long the fear of mental illness has been profoundly destructive to people's lives. In fact mental illnesses are just as real as other illnesses, and they are like other illnesses in most ways. Yet fear and stigma persist, resulting in lost opportunities for individuals to seek treatment and improve or recover. In this Administration, a persistent, courageous advocate of affordable, quality mental health services for all Americans is Mrs. Tipper Gore, wife of the Vice President. We salute her for her historic leadership and for her enthusiastic support of the initiative by the Surgeon General, Dr. David Satcher, to issue this groundbreaking Report on Mental Health. The 1999 White House Conference on Mental Health called for a national antistigma campaign. The Surgeon General issued a Call to Action on Suicide Prevention in 1999 as well. This Surgeon General's Report on Mental Health takes the next step in advancing the important notion that mental health is fundamental health. Foreword Since the turn of this century, thanks in large measure to research-based public health innovations, the lifespan of the average American has nearly doubled. Today, our Nation's physical health-as a whole-has never been better. Moreover, illnesses of the body, once shrouded in fear-such as cancer, epilepsy, and HIV/AIDS to name just a few -increasingly are seen as treatable, survivable, even curable ailments. Yet, despite unprecedented knowledge gained in just the past three decades about the brain and human behavior, mental health is often an afterthought and illnesses of the mind remain shrouded in fear and misunderstanding. This Report of the Surgeon General on Mental Health is the product, of an invigorating collaboration between two Federal agencies. The Substance Abuse and Men&Health Services Administration (SAMHSA), which provides national leadership and funding to the states and many professional and citizen organizations that are striving to improve the availability, accessibility, and quality of mental health services, was assigned lead responsibility for coordinating the development of the report. The National Institutes of Health (NM), which supports and conducts research on mental illness and mental health through its National Institute of Mental Health (NIMH), was pleased to be a partner in this effort. The agencies we respectively head were able to rely on the enthusiastic participation of hundreds of people who played a role in researching, writing, reviewing, and disseminating this report. We wish to express our appreciation and that of a mental health constituency, millions of Americans strong, to Surgeon General David Satcher, M.D., Ph.D., for inviting us to participate in this landmark report. The year 1999 witnessed the first White House Conference on Mental Health and the first Secretarial Initiative on Mental Health prepared under the aegis of the Department of Health and Human Services. These activities set an optimistic tone for progress that will be realized in the years ahead. Looking ahead, we take special pride in the remarkable record of accomplishment, in the spheres of both science and services, to which our agencies have contributed over past decades. With the impetus that the Surgeon General's report provides, we intend to expand that record of accomplishment. This report recognizes the inextricably intertwined relationship between our mental health and our physical health and well-being. The report emphasizes that mental health and mental illnesses are important concerns at all ages. Accordingly, we will continue to attend to needs that occur across the lifespan, from the youngest child to the oldest among us. The report lays down a challenge to the Nation- to our communities, our health and social service agencies, our policymakers, employers, and citizens-to take action. SAMHSA and NIH look forward to continuing our collaboration to generate needed knowledge about the brain and behavior and to translate that knowledge to the service systems, providers, and citizens. Nelba Chavez, Ph.D. Steven E. Hyman, M.D. Administrator Director Substance Abuse and Mental Health National Institute of Mental Health Services Administration for The National Institutes of Health Bernard S. Arons, M.D. Director Center for Mental Health Services Preface from the Surgeon C&era/ U.S. Public Health Service The past century has witnessed extraordinary progress in our improvement of the public health through medical science and ambitious, often innovative, approaches to health care services. Previous Surgeons General reports have saluted our gains while continuing to set ever higher benchmarks for the public health. Through much of this era of great challenge and greater achievement, however, concerns regarding mental illness and mental health too often were relegated to the rear of our national consciousness. Tragic and devastating disorders such as schizophrenia, depression and bipolar disorder, Alzheimer's disease, the mental and behavioral disorders suffered by children, and a range of other mental disorders affect nearly one in five Americans in any year, yet continue too frequently to be spoken of in whispers and shame. Fortunately, leaders in the mental health field-fiercely dedicated advocates, scientists, government officials, and consumers-have been insistent that mental health flow in the mainstream of health. I agree and issue this report in that spirit. This report makes evident that the neuroscience of mental health-a term that encompasses studies extending from molecular events to psychological, behavioral, and societal phenomena-has emerged as one of the most exciting arenas of scientific activity and human inquiry. We recognize that the brain is the integrator of thought, emotion, behavior, and health. Indeed, one of the foremost contributions of contemporary mental health research is the extent to which it has mended the destructive split between "mental' and "physical" health. We know more today about how to treat mental illness effectively and appropriately than we know with certainty about how to prevent mental illness and promote mental health. Common sense and respect for our fellow humans tells us that a focus on the positive aspects of mental health demands our immediate attention. Even more than other areas of health and medicine, the mental health field is plagued by disparities in the availability of and access to its services. These disparities are viewed readily through the lenses of racial and cultural diversity, age, and gender. A key disparity often hinges on a person's financial status; formidable financial barriers block off needed mental health care from too many people regardless of whether one has health insurance with inadequate mental health benefits, or is one of the 44 million Americans who lack any insurance. We have allowed stigma and a now unwarranted sense of hopelessness about the opportunities for recovery from mental illness to erect these barriers. It is time to take them down. Promoting mental health for all Americans will require scientific know-how but, even more importantly, a societal resolve that we will make the needed investment. The investment does not call for massive budgets; rather, it calls for the willingness of each of us to educate ourselves and others about mental health and mental illness, and thus to confront the attitudes, fear, and misunderstanding that remain as barriers before us. It is my intent that this report will usher in a healthy era of mind and body for the Nation. David Satcher, M.D., Ph.D. Surgeon General Acknowledgments Acknowledgments This report was prepared by the Department of Health and Human Services under the direction of the Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, in partnership with the National Institute of Mental Health, National Institutes of Health. Nelba Chavez, Ph.D., Administrator, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. Harold E. Varmus, M.D., Director, National Institutes of Health, Bethesda, Maryland. Bernard Arons, M.D., Director, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. Steven Hyman, M.D., Director, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland. RADM Thomas Bornemann, Ed.D., Deputy Director, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. Richard Nakamura, Ph.D., Deputy Director, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland. RADM Kenneth Moritsugu, M.D., M.P.H., Deputy Surgeon General, Office of the Surgeon General, Office of the Secretary, Rockville, Maryland. RADM Susan Blumenthal, M.D., M.P.A., Assistant Surgeon General and Senior Science Advisor, Office of the Surgeon General, Office of the Secretary, Rockville, Maryland. Nicole Lurie, M.D., M.S.P.H., Principal Deputy Assistant Secretary for Health, Office of Public Health and Science, Office of the Secretary, Washington, D.C. RADM Arthur Lawrence, Ph.D., Deputy Assistant Secretary for Health, Office of Public Health and Science, Office of the Secretary, Washington, D.C. VirginiaTrotterBetts,M.S.N., J.D.,R.N.,F.A.A.N., Senior Advisor on Nursing and Policy, Office of Public Health and Science, .Office of the Secretary, Washington, D.C. Editors Howard H. Goldman, M.D., Ph.D., Senior Scientific Editor, Professor of Psychiatry, University of Mary- land School of Medicine, Baltimore, Maryland. CAPT Patricia Rye, J.D., M.S.W., Managing Editor, Office of the Director, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. Paul Sirovatka, M.S., Coordinating Editor, Science Writer, Office of Science Policy and Program Planning, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland. Section Editors Jeffrey A. Buck, Ph.D., Director, Office of Managed Care, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. CAPT Peter Jensen, M.D., Associate Director for Child and Adolescent Research, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland. . vii Mental Health: A Report of the Surgeon General Judith Katz-Leavy, M.Ed., Senior Policy Analyst, Office of Policy, Planning and Administration, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. Planning Board Mary Lou Andersen, Deputy Director, Bureau of Primary Health Care, Health Resources and Services Administration, Bethesda, Maryland. Barry Lebowitz, Ph.D., Chief, Adult and Geriatric Treatment and Preventive Intervention Research Branch. Division of Services and Intervention Research, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland. Andrea Baruchin, Ph.D., Chief, Science Policy Branch, Office of Science Policy and Communication, National Institute on Drug Abuse, National Institutes of Health, Bethesda, Maryland. Ronald W. Manderscheid, Ph.D., Chief, Survey and Analysis Branch, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. Michael Benjamin, M.P.H., Executive Director, National Council on Family Relations, Minneapolis, Minnesota. Robert Bernstein, Ph.D., Executive Director, Bazelon Center, Washington, D.C. RADM Darrel Regier, M.D., M.P.H., Associate Director, Epidemiology and Health Policy Research, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland. Gene Cohen, M.D., Ph.D., Director, George Washington University Center on Aging, Health and Humanities; Director, Washington D.C. Center on Aging, Washington, D.C. Matthew V. Rudorfer, M.D., Associate Director for Treatment Research, Division of Services and Intervention Research, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland. Judith Cook, Ph.D., Director, National Research and Training Center on Psychiatric Disability; Professor, Department of Psychiatry, University of Illinois at Chicago, Chicago, Illinois. Senior Science Writer Margaret Coopey, R.N., Senior Health Policy Analyst, Director, Center for Practice and Technology Assessment, Agency for Health Care Policy and Research, Rockville, Maryland. Miriam Davis, Ph.D., Medical Writer and Consultant, Silver Spring, Maryland. Gail Daniels, Board President, The Federation of Families for Children's Mental Health, Washington, D.C. Science Writers Birgit An der Lan, Ph.D., Science Writer, Bethesda, Maryland. Anne H. Rosenfeld, Special Assistant to the Director, Division of Mental Disorders, Behavioral Research and AIDS, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland. . . . Vlll Paolo Del Vecchio, M.S.W., Senior Policy Analyst, Office of Policy, Planning, and Administration, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. Michael Eckardt, Ph.D., Senior Science Advisor, Office of Scientific Affairs, National Institute on Alcohol Abuse and Alcoholism National Institutes of Health, Rockville, Maryland. Acknowledgments Mary Jane England, M.D., President, Washington Elliott Heiman, M.D., Chief of Staff of Psychiatry, St. Business Group on Health, Washington, D.C. Mary's Hospital, Tucson, Arizona. Michael English, J.D., Director, Divisionof Knowledge Development and Systems Change, Center for Mental Health Services, Substance Abuse and Mental Health Sewices Administration, Rockville, Maryland. Michael M. Faenza, M.S.S.W., President and Chief Executive Officer, National Mental Health Association, Alexandria, Virginia. Michael Fishman, M.D., Assistant Director, Division of Child. Adolescent and Family Health, Bureau of Maternal and Child Health, Health Resources and Services Administration, Rockville, Maryland. Laurie Flynn, Executive Director, National Alliance for the Mentally Ill, Arlington, Virginia. Larry Fricks, Director, Office of Consumer Relations, Georgia Division of Mental Health, Atlanta, Georgia. Robert Friedman, Ph.D., Director, Research and Training Center for Children's Mental Health, Florida Mental Health Institute, University of South Florida, Tampa. Florida. Laurie Garduque, Ph.D., Senior Program Officer, Program and Community Development, MacArthur Foundation, Chicago, Illinois. John J. Gates, Ph.D., Director of Programs, Collaborative Center for Child Well-being, Decatur, Georgia. Rosa M. Gil, D.S.W., Special Advisor to the Mayor for Health Policy, New York City Mayor's Office of Health Services, New York, New York. Barbara Gill, M.B.A., Executive Director, Dana Alliance for Brain Initiatives, New York, New York. Kevin Hennessy, M.P.P., Ph.D., Health Policy Analyst, Office of the Assistant Secretary for Planning and Evaluation, Office of the Secretary, Washington, D.C. Pablo Hemandez, M.D., Administrator, Wyoming State Commission for Mental Health, Division of Behavioral Health, Evanston, Wyoming. Thomas Horvath, M.D., Chief of Staff, Houston Veterans Affairs Medical Cent&, .Houston, Texas. J. Rock Johnson, J.D., Consultant, Lincoln, Nebraska. Miriam Kelty, Ph.D., Associate Director for Extramural Affairs, National Institute on Aging, National Institutes of Health, Bethesda, Maryland. Lloyd Kolbe, Ph.D., Director, Division of Adolescent and School Health, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention, Atlanta, Georgia. Jeffrey Lieberman, M.D., Vice Chairman of Research, University of North Carolina, Department of Psychiatry, Chapel Hill, North Carolina. Spero Manson, Ph.D., Director, Division of American Indian and Alaska Native Programs, University of Colorado Health Science Center, Department of Psychiatry, Denver, Colorado. RADM C. Beth Mazzella, R.N., Ph.D., Chief Nurse Officer, Office of the Administrator, Health Resources and Services Administration, Rockville, Maryland. Bruce McEwen, Ph.D., Professor and Head of the Lab for Neuroendocrinology, Rockefeller University, New York, New York. Mary Harper, R.N., Ph.D., Gerontologist, Tuscaloosa, Alabama. ix Mental Health: A Report of the Surgeon General Herbert Pardes, M.D., Vice President for Health Sciences and Dean of the Faculty of Medicine, Columbia University Health Sciences Center, New York, New York. Ruth Ralph, Ph.D., Research Associate, Edmund S. Muskie School of Public Service, University of Southern Maine, Portland, Maine. The Honorable Robert Ray, Former Governor, State of Iowa, Des Moines, Iowa. Corinne Rieder, Ed.D., Executive Director, John A. Hartford Foundation, New York, New York. Mona Rowe, M.C.P., Deputy Director, Office of Science Policy, Analysis, and Communication, National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, Maryland. Steve Schreiber, M.D., Associate Professor of Neurology, Cell and Neurobiology, University of Southern California School of Medicine, Department of Neurology, Los Angeles, California. Steven A. Schroeder, M.D., President, Robert Wood Johnson Foundation, Princeton, New Jersey. Brent Stanfield, Ph.D., Director, Office of Science Policy and Program Planning, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland. Stanley Sue, Ph.D., Professor of Psychology and Psychiatry, Director, Asian American Studies Program, Department of Psychology, University of California at Davis, Davis, California. Jeanette Takamura, Ph.D., Assistant Secretary for Aging, Administration on Aging, Washington, D.C. Roy C. Wilson, M.D., Director, Missouri Department of Mental Health, Jefferson City, Missouri. Participants in Developing the Report Norman Abeles, Ph.D., Department of Psychology, Michigan State University, East Lansing, Michigan. Catherine Acuff, Ph.D., Senior Health Policy Analyst, Office of the Director, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. Laurie Ahem, Director, National Empowerment Center, Inc., Lawrence, Massachusetts. Marguerite Alegria, Ph.D., University of Puerto Rico, Medical Sciences Campus, School of Public Health, San Juan. Puerto Rico. Rene Andersen, M.Ed., Human Resource Association of the Northeast, Holyoke, Massachusetts. Thomas E. Arthur, M.H.A., Coordinator of Consumer Affairs, Maryland Health Partners, Columbia, Maryland. Rosina Becerra, Ph.D., Professor, Department of Social Welfare, Center for Child and Family Policy, University of California at Los Angeles, Los Angeles, California. Comelia Beck, R.N., F.A.A.N., Ph.D., College of Nursing, University of Arkansas for Medical Services, Little Rock, Arkansas. Peter G. Beeson, Ph.D., Administrator, Strategic Management Services, Nebraska Health and Human Services Finance and Support Agency, Lincoln, Nebraska. Leonard Bickman, Ph.D., Professor of Psychology, Center for Mental Health Policy, Institute for Public Policy Studies, Vanderbilt University, Nashville, Tennessee. Robert Boorstin, Senior Advisor to the Secretary of the Treasury, Department of the Treasury, Washington, D.C. X Acknowledgments David Brown, Consultant, Survey and Analysis Branch, Division of State and Community Systems Development, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. Barbara J. Bums, Ph.D., Professor of Medical Psychology, Department of Psychiatry and Behavioral Sciences, Duke University Medical Center, Durham, North Carolina. Jean Campbell, Ph.D., Research Assistant Professor, Missouri Institute of Mental Health, School of Medicine, University of Missouri-Columbia, St. Louis, Missouri. JosefinaCarbonell, President, Little Havana Activities and Nutrition Centers of Dade County, Inc., Miami, Florida. Elaine Carmen, M.D., Medical Director, Brockton Multi Service Center, Brockton, Massachusetts. H. Westley Clark, M.D., J.D., M.P.H., Director, Center for Substance Abuse Treatment, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. Donald J. Cohen, M.D., Professor of Child and Adolescent Psychiatry, Yale University School of Medicine, New Haven, Connecticut. Judith Cohen, Ph.D., Director, Association for Women's AIDS Risk Education, Corte Madera, California. King Davis, Ph.D., William and Camille Cosby Scholar, Howard University, Washington, D.C. Laura A. DeRiggi, L.S.W ., M.S.W., Clinical Director, Community Behavioral Health, Philadelphia, Pennsylvania. Lisa Dixon, M.D., Associate Professor, Center for Mental Health Services Research; Director of Education, Department of Psychiatry, University of Maryland School of Medicine, Baltimore, Maryland. Susan Dubuque, President, Market Strategies, Inc., Richmond, Virginia. Mina K. Dulcan, M.D., Head, Department of Child and Adolescent Psychiatry, Children's Memorial Hospital, Chicago, Illinois. Nellie Fox Edwards, American Association of Retired Persons, Beaverton, Oregon. Lisa T. Eyler-Zorrilla, Ph.D., Post-Doctoral Fellow, Geriatric Psychiatry Clinical Research Center, Department of Psychiatry, University of California-San Diego, La Jolla, California. Theodora Fine, M.A., Special Assistant to the Director, Office of the Director, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. Dan Fisher, M.D., Ph.D., Executive Director, National Empowerment Center, Inc., Lawrence, Massachusetts. Richard G. Frank, Ph.D., Professor of Health Economics, Department of Health Care Policy, Harvard University, Boston, Massachusetts. Barbara Friesen, Ph.D., Director, Research and Training Center, Family Support and Children's Mental Health, Portland State University, Portland, Oregon. Darrell Gaskin, Ph.D., Research Assistant Professor, Institute for Health Care Research and Policy, Georgetown University Medical Center, Washington, D.C. Mary Jo Gibson, Ph.D., Associate Director of Public Policy Institute, AARP, Washington, D.C. Xi Mental Health: A Report of the Surgeon General Sherry Glied. Ph.D., Associate Professor and Head, Division of Health Policy and Management, Joseph L. Mailman School of Public Health, Columbia University, New York, New York. Margo Goldman, M.D., Policy Director, National Coalition for Patients' Rights, Lexington, .. Massachusetts. Junius Gonzales, M.D., Deputy Chairman, Psychiatry Department, Georgetown University, Washington, D.C. Jack Gorman, M.D., Professor of Psychiatry, Columbia University; Deputy Director, New York State Psychiatric Institute, New York, New York. Barbara Guthrie, Ph.D., R.N., University of Michigan School of Nursing, Ann Arbor, Michigan. Jennifer Gutstein, Research Assistant, Department of Child Psychiatry, Columbia University, New York, New York. Laura Lee Hall, Ph.D., Deputy Director of Policy and Research, National Alliance for the Mentally Ill, Arlington, Virginia. Richard K. Harding, M.D., Medical Director, Psychiatric Services, Richland Springs Hospital, Columbia, South Carolina. Herbert W. Harris, M.D., Ph.D., Chief, Geriatric Pharmacology Programs, Adult and Geriatric Treatment and Preventive Intervention Research Branch, Division of Services and Intervention Research, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland. Seth Hassett, M.S.W., Public Health Advisor, Emergency Services and Disaster Relief Branch, Division of Program Development, Special Populations and Projects, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. Mario Hemandez, Ph.D., Director, Division of Training, Research, Evaluation and. Demonstrations, Department of Child and Family Studies, Florida Mental Health Institute, Tampa, Florida. Kimberly Hoagwood, Ph.D., Associate Director, Child and Adolescent Research, Natitinal Institute of Mental Health, National Institutes of Health, Bethesda, Maryland. Ron Honberg, Director of Legal Affairs, National Alliance for the Mentally Ill, Arlington, Virginia. Teh-wei Hu, Ph.D., Professor'of Health Economics, School of Public Health, University of California-Berkeley, Berkeley, California. Edwin C. Hustead, Senior Consultant, Hay Group, Inc., Washington, D.C. Dilip V. Jeste, M.D., Director, Geriatric Psychiatry Clinical Research Center, University of California at San Diego, Veterans Affairs Medical Center Psychiatry Service, San Diego, California. Ira Katz, M.D., Ph.D., Professor of Psychiatry, Director, Section on Geriatric Psychiatry, University of Pennsylvania, Philadelphia, Pennsylvania. Kelly J. Kelleher, M.D., Staunton Professor of Pediatrics, Psychiatry and Health Services, Schools of Medicine and Public Health, Departments of Pediatrics and Psychiatry, University of Pittsburgh, Pittsburgh, Pennsylvania. Chris Koyanagi, Director of Legislative Policy, Bazelon Center for Mental Health Law, Washington, D.C. Celinda Lake, M.P.S., President and Founder, Lake Snell Perry and Associates, Inc., Washington, D.C. Christopher Langston, Ph.D., Program Officer, John A. Hartford Foundation, New York, New York. xii Acknowledgments John B. Lavigne, Ph.D., Chief Psychologist, Department of Child and Adolescent Psychiatry, Children's Memorial Hospital, Chicago, Illinois. Anthony Lehman, M.D., Director, Center for Mental Health Services Research, University of Maryland School of Medicine, Baltimore, Maryland. Keh-Ming Lin, M.D., M.P.H., Director of Research Center on the Psychobiology of Ethnicity, Professor of Psychiatry, University of California at Los Angeles School of Medicine, Harbor-University of California at Los Angeles Medical Center, Torrance, California. Steven Lopez, Ph.D., Clinical Psychologist, Department of Psychology, University of California at Los Angeles, Los Angeles, California. Ira Lourie, M.D., Partner, Human Service Collaborative, Rockville, Maryland. Francis Lu, M.D., Director of Cultural Competence and Diversity Program, Department of Psychiatry, San Francisco General Hospital, San Francisco, California. Alicia Lucksted, Ph.D., Senior Research Associate, Department of Psychiatry, University of Maryland, Baltimore, Maryland. Bryce Miller, Consultant, National Alliance for the Mentally Ill, Topeka, Kansas. Jeanne Miranda, Ph.D., Associate Professor, Psychiatry Department, Georgetown University, Washington, D.C. Joseph P. Morrissey, Ph.D., Deputy Director, Senior Fellow, Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina. Patricia J. Mrazek, Ph.D., President, Scientific Director, Prevention Technologies, LLC, Bethesda, Maryland. Denise Nagel, M.D., Executive Director, National Coalition for Patients' Rights, Lexington, Massachusetts. William Narrow, M.D., M.P.H., Senior Advisor for Epidemiology, Office of the Associate Director for Epidemiology and Health Policy Research, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland. Cassandra F. Newkirk, M.D., Forensic Psychiatrist and Consultant, Caldwell, New Jersey. Silvia W. Orlate, M.D., Clinical Professor of Psychology, New York Medical College-Vahalla, New York, New York. Trina Osher, M.S.W., Coordinator of Policy and Research, Federation of Families for Children's Mental Health, Alexandria, Virginia. John Petrila, J.D., L.L.M., Chairman and Professor, Department of Mental Health Law and Policy, University of South Florida, Florida Mental Health Institute, Tampa, Florida. RADM Retired William Prescott, M.D., Psychiatrist, Brook Lane Health Service, Hagerstown, Maryland. Juan Ramos, Ph.D., Associate Director for Prevention, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland. Burton Reifler, M.D., Professor and Chairman, Department of Psychiatry, Wake Forest University School of Medicine, Winston-Salem, North Carolina. Donald J. Richardson, Ph.D., The Carter Center National Advisory Council; Co-founder and Vice President, National Alliance for Research on Schizophrenia and Depression, Los Angeles, California. Jean Risman, Consumer Researcher, North Berwick, Maine. . . . x111 Mental Health: A Report of the Surgeon General Ariela C. Rod-iguez, Ph.D., L.C.S.W., A.C.S.W., Director, Hlislth dnd Social Services, Little Havana Activities and Nutrition Centers of Dade County, Inc., Miami, Florida. Gloria Rodriguez, Ph.D., President and Chief Executive Officer, Avance Corporation, San Antonio, Texas. Abram Rosenblatt, Ph.D., Research Director, University of California at San Francisco Child Services Research Group, San Francisco, California Agnes E. Rupp, Ph.D., Senior Economist and Chief, Financing and Managed Care Research Program, Services Research and Clinical Epidemiology Branch, Division of Services and Intervention Research, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland. A. John Rush, M.D., Professor of Psychiatry, University of Texas Southwest Medical Center, Department of Psychiatry, Dallas, Texas. David Shaffer, M.D., Professor of Psychiatry and Pediatrics, Director, Division of Child and Adolescent Psychiatry, Columbia University, New York, New York. David Shore, M.D., Associate Director for Clinical Research, Office of the Director, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland. Lonnie Snowden, Ph.D., Professor, School of Social Welfare, University of California-Berkeley; Director, Center for Mental Health Services Research, Berkeley, California. George Snicker, Ph.D., Distinguished Research Professor of Psychology, Demer Institute, Adelphi University, Garden City, New York. Michael E. Thase, M.D., Professor of Psychiatry, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania. Jurgen Unutzer, M.D., M.P.H., M.A., Assistant Professor in Residence, Department of Psychiatry, University of California at Los Angeles Neuropsychiatric Institute, Center for Health Services Research, Los Angeles, California. Laura Van Tosh, Consultant, Silver Spring, Maryland. Joan Ellen Zweben, Ph.D., Clinical Professor, Department of Psychiatry, School of Medicine, University of California-San Francisco, Berkeley, California. Other Participants Joan G. Abell, Chief, Information Resources and Inquiries Branch, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland. Curtis Austin, Director, Office of External Liaison, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. Elaine Baldwin, M.Ed., Chief, Public Affairs and Science Reports Branch, Office of Scientific Information, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland. Leslie Bassett, Program Assistant, Office of the Director, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. Bonni Bennett, Desktopping Specialist, R.O.W. Sciences, Inc., Rockville, Maryland. Margaret Blasinsky, M.A., Vice President, R.O.W. Sciences, Inc., Rockville, Maryland. Anne B. Carr (formerly Program Assistant, Office of the Director, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration), Silver Spring, Maryland. xiv Lemuel B. Clark, M.D., Chief, Community Mental Health Centers Construction Monitoring Branch, Division of Program Development, Special Populations and Projects, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. Olavo Da Rocha, Graphic Designer, R.O.W. Sciences, Inc.. Rockville, Maryland. Daria Donaldson, Editor, R.O.W. Sciences, Inc., Rockville, Maryland. Betsy Furin, Program Assistant, Community Mental Health Centers Construction Monitoring Branch, Division of Program Development, Special Populations and Projects, Center for Mental'Health Services, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. David Fry, Consultant Writer, Cabin John, Maryland. Charlotte Gordon, Public Affairs Specialist, Office of the Director, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. Beatriz GrarnIey, Public Health Analyst, Primary Care Services Branch, Division of Community Based Programs, HIV/AIDS Bureau, Health Resources and Services Administration, Rockville, Maryland. CAPT G. Bryan Jones, Ph.D., Emergency Coordin- ator, Public Health Service Region Three- Philadelphia, Office of Emergency Preparedness, Office of Public Health and Science, Office of the Secretary, Philadelphia, Pennsylvania. Walter Leginski, Ph.D., Branch Chief, Homeless Programs Branch, Division of Knowledge Development and Systems Change, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. Ken Lostoski, Senior Graphic Designer, R.O.W. Sciences, Inc., Rockville, Maryland. Acknowledgments Michael Malden, Public Affairs Specialist, Knowledge Exchange Network, Office of External Liaison, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. Anne Matthews-Younes, Ed.D., Chief, Special Programs Development Branch, Division of Program Development, Special Populations and Projects, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. Kevin McGowan, Contract, Specialist, General Acquisitions Branch, Division of Acquisition Management, Administrative Operations Service, Program Support Center, Rockville, Maryland. Niyati Pandya, M.S., M.Phil., M.L.S., Reference Librarian, R.O.W. Sciences, Inc., Rockville, Maryland. Theodora Radcliffe, Technical Writer/Editor, R.O. W. Sciences, Inc., Rockville, Maryland. Sanjeev Rana, M.S., Research Assistant, R.O.W. Sciences, Inc., Rockville, Maryland. Lisa Robbins, Wordprocessing & Desktopping Coordinator, R.O.W. Sciences, Inc., Rockville, Maryland. Doreen Major Ryan, M.A., Writer/Editor, R.O.W. Sciences, Inc., Rockville, Maryland. Sally Sieracki, M.A., Editor, R.O.W. Sciences, Inc., Rockville, Maryland, Damon Thompson, Director of Communications, Office of Public Health and Science, Office of the Assistant Secretary, Washington, D.C. Robin Toliver, Senior Conference Planner, BL Seamon and Associates, Inc., Lanham, Maryland. Joanna Tyler, Ph.D., Project Director, R.O.W. Sciences, Inc., Rockville, Maryland. xv Mental Health: A Report of the Surgeon General Mark Weber, Associate Administrator, Office of Communications, Substance Abuse and Mental Health Services Administration, Rockville, Maryland. Clarissa Wittenberg, Director, Office of Scientific Information, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland. Baldwin Wong, Program Analyst, Office of Science Policy, Analysis, and Communication. National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, Maryland. Special Thanks To Organizafions The Carter Center, Atlanta, Georgia. The John D. and Catherine T, MacArthur Foundation, Chicago, Illinois. Individuals Virginia Shankle Bales, M.P.H., Deputy Director for Program Management, Centers for Disease Control and Prevention, Atlanta, Georgia. Byron Breedlove, M.A., Senior Writer/Editor, Technical Information and Editorial Services Branch, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention, Atlanta, Georgia. Thomas Bryant, M.D., J.D., Chairman, Non-Profit Management Associates, Inc., Washington, DC. Rosalynn Carter, Vice Chair, The Carter Center, Atlanta, Georgia. RADM J. Jarrett Clinton, M.D., Regional Health Administrator, Office of the Secretary, Atlanta, Georgia. Michael P. Eriksen, Sc.D., Director, Office on Smoking and Health, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention, Atlanta, Georgia. Christine S. Fralish, M.L.I.S., Chief, Technical Information and Editorial Services Branch, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention, Atlanta, Georgia. Adele Franks, M.D., Prudential Center for Health Services Research (formerly Assistant Director for Science, National Center. for Chronic Disease Prevention and Health Promotio&Centers for Disease Control and Prevention), Atlanta, Georgia. RADM Retired Peter Frommer, M.D., Deputy Director Emeritus, National Heart, Lung, and Blood Institute, National Institutes of Health, Bethesda, Maryland. Gayle Lloyd, M.A., Managing Editor, Surgeon General Reports, Office on Smoking and Health, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention, Atlanta, Georgia. Sandra P. Perlmutter, Executive Director, President's Council on Physical Fitness and Sports, Washington, D.C. NOTICE The editor, the contributors, and the publisher are grateful to the American Psychiatric Association for permission to quote directly from Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), 4th ed. in this work. Descriptive matter is enclosed in quotation marks in the text exactly as it appears in DSM-IV. Tabular matter is modified slightly as to form only in accordance with the publisher's editorial usage. xvi MENTAL HEALTH: A REPORT OF THE SURGEON GENERAL Chapter 1: Introduction and Themes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ; . .,. . . . . . . . . 1 Overarching Themes .............. ; ........................................ 3 The Science Base of the Report .... .' .......................................... 9 Overvieti of the Report's Chapters ........................................... 11 ChapterConclusions ...................................................... 13 Preparation of the Report ................................................... 23 References ....... . ...................................................... 24 (`haptcr 2: The Fundamentals of Mental Health and Mental Illness . , . . . . . . . . . . . . . . . . . . . . . . 27 The Neuroscience of Mental Health .......................................... 32 Overview of Mental Illness ................................................. 39 Overview of Etiology ...................................................... 49 Overview of Development, Temperament, and Risk Factors ....................... 57 Overview of Prevention .................................................... 62 Overview of Treatment ..................................................... 64 Overview of Mental Health Services .......................................... 73 Overview of Cultural Diversity and Mental Health Services ....................... 80 Overview of Consumer and Family Movements ................................. 92 Overview of Recovery ..................................................... 97 Conclusions ............................................................ 100 References ............................................................. 104 Chapter 3: Children and Mental Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 117 Normal Development ..................................................... 124 Overview of Risk Factors and Prevention ..................................... 129 Overview of Mental Disorders in Children .................................... 136 Attention-Deficit/Hyperactivity Disorder ..................................... 142 Depression and Suicide in Children and Adolescents ............................ 150 Other Mental Disorders in Children and Adolescents ............................ 160 Services Interventions .................................................... 168 ServiceDelivery ......................................................... 179 Conclusions ............................................................ 193 References ............................................................. 194 A Report of the Surgeon General Chapter 4: Adults and Mental Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . :. . . . . . . . . . . . . . . . . . 221 Chapter Overview ........................................................ 225 Anxiety Disorders ........................................................ 233 MoodDisorders ......................................................... 244 Schizophrenia ........................................................... 269 Service Delivery ......................................................... 285 OtherServicesAndSupports ............................................... 289 Conclusions ............................................................. 296 References.. ............................................................ 296 Chapter 5: Older Adults and Mental Health .......................................... 331 Chapter Overview ......................................................... 336 Overview of Mental Disorders in Older Adults ................................. 340 Depression in Older Adults ................................................. 346 Alzheimer's Disease ...................................................... 356 Other Mental Disorders in Older Adults ...................................... 364 ServiceDelivery ......................................................... 370 Other Services and Supports ................................................ 378 Conclusions ............................................................. 381 References .............................................................. 381 Chapter 6: Organizing and Financing Mental Health Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . 403 Overview of the Current Service System ...................................... 405 The Costs of Mental Illness ................................................ 411 Financing and Managing Mental Health Care .................................. 418 Toward Parity in Coverage of ,Mental Health Care .............................. 426 Conclusions ............................................................. 428 Appendix 6-A: Quality and Consumers' Rights ................................. 430 References.. ............................................................ 430 Chapter 7: Confidentiality of Mental Health Information . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 435 Chapter Overview ........................................................ 438 Ethical Issues About Confidentiality ......................................... 438 Values Underlying Confidentiality ........................................... 439 Research on Confidentiality and Mental Health Treatment ........................ 440 Current State of Confidentiality Law ......................................... 441 Federal Confidentiality Laws ............................................... 446 Potential Problems With the Current Legal Framework .......................... 447 Summary.. ............ . ................................................ 448 Conclusions.. ........................................................... 449 References ............................................................... 449 Mental Health Chapter 8: A Vision for the Future ................................................. 45 1 Continue To Build the Science Base ........................................ 453 Overcome Stigma ........................................................ 454 Improve Public Awareness of Effective Treatment ............................. 454 Ensure the Supply of Mental Health Services and Providers ...................... 455 Ensure Delivery of State-of-the-Art Treatments ................................. 455 Tailor Treatment to Age, Gender, Race, and Culttire ............................ 456 Facilitate Entry Into Treatment ............................................. 457 Reduce Financial Barriers to Treatment ...................................... 457 Conclusion ............................................................. 458 References ............................................................. 458 Appendix: Directory of Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 459 List of Tables and Figures ......................................................... 463 Index ........................................................................ 467 CHAPTER 1 INTRODUCTION AND THEMES Contents Overarching Themes .`. ......................................... 3 ................... Mental Health and Mental Illness: A Public Health Approach .......................... 3 Mental Disorders are Disabling .................................................. 4 Mental Health and Mental Illness: Points on a Continuum ............................. 4 Mind and Body are Inseparable .................................................. 5 TheRootsofStigma.. ......................................................... 6 Separation of Treatment Systems .............................................. 6 Public Attitudes About Mental Illness: 1950s to 1990s ............................. 7 Stigma and Seeking Help for Mental Disorders ................................... 8 Stigma and Paying for Mental Disorder Treatment ................................ 8 Reducing Stigma .......................................................... 8 The Science Base of the Report ..................................................... 9 Reliance on Scientific Evidence ................................................... 9 ResearchMethods ........................................................ 10 LevelsofEvidence ........................................................ 10 Overview of the Report's Chapters . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 ChapterConclusions ............................................................. 13 Chapter 2: The Fundamentals of Mental Health and Mental Illness ..................... 13 Chapter 3: Children and Mental Health ........................................... 17 Chapter 4: Adults and Mental Health ............................................. 18 Chapter 5: Older Adults and Mental Health ........................................ 19 Chapter 6: Organization and Financing of Mental Health Services ...................... 19 Chapter 7: Confidentiality of Mental Health Information: Ethical, Legal, and Policy Issues . . 20 Chapter 8: A Vision for the Future-Actions for Mental Health in the New Millennium .... 21 PreparationoftheReport ..,..........,........................................... 23 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24 CHAPTER 1 INTRODUCTION AND THEMES T his first Surgeon General's Report on Mental Health is issued at the culmination of a half-century [hat has witnessed remarkable advances in the understanding of mental disorders and the brain and in (,llr appreciation of the centrality of mental health to c,\.rrall health and well-being. The report was prepared ;\g;iinst a backdrop of growing awareness in the United States and throughout the world of the immense burden ,,f disability associated with mental illnesses. In the [ Tllitcd States. mental disorders collectively account for 1110rc than 15 percent of the overall burden of disease t'r~rn trll causes and slightly more than the burden ;lssociated with all forms of cancer (Murray & Lopez, 1~16). These data underscore the importance and r~rgcncy of treating and preventing mental disorders and 01` promoting mental health in our society. The report in its entirety provides an up-to-date rcvicw of scientific advances in the study of mental hcalrh and of mental illnesses that affect at least one in I'ivc Americans. Several important conclusions may be drawn from the extensive scientific literature \ummarized in the report. One is that a variety of treatments of well-documented efficacy exist for the ~Irray of clearly defined mental and behavioral disorders that occur across the life span. Every person \hould be encouraged to seekhelp when questions arise about mental health, just as each person is encouraged to seek help when questions arise about health. Research highlighted in the report demonstrates that mental health is a facet of health that evolves throughout the lifetime. Just as each person can do much to promote and maintain overall health regardless Of age, each also can do much to promote and `trengthen mental health at every stage of life. Much remains to be learned about the causes, treatment. and prevention of mental and behavioral disorders. Obstacles that may limit the availability or accessibility of mental health services for some Americans are being dismantled, but disparities persist. Still, thanks to research tid Be experiences of millions of individuals who have a mental disorder, their family members, and other advocates, the Nation has the power today to tear down the most formidable obstacle to future progress in the arena of mental illness and health. That obstacle is stigma. Stigmatization of mental illness is an excuse for inaction and discrimination that is inexcusably outmoded in 1999. As evident in the chapters that follow, we have acquired an immense amount of knowledge that permits us, as a Nation, to respond to the needs of persons with mental illness in a manner that is both effective and respectful. Overarching Themes Mental Health and Mental Illness: A Public Health Approach The Nation's contemporary mental health enterprise, like the broader field of health, is rooted in a population-based public health model. The public health model is characterized by concern for the health of a population in its entirety and by awareness of the linkage between health and the physical and psycho- social environment. Public health focuses not only on traditional areas of diagnosis, treatment, and etiology, but also on epidemiologic surveillance of the health of the population at large, health promotion, disease pre- vention, and access to and evaluation of services (Last & Wallace, 1992). Just as the mainstream of public health takes a broad view of health and illness, this Surgeon General's Report on Mental Health takes a wide-angle lens to both mental health and mental illness. In years Mental Health: A Report of the Surgeon General past, the mental health field often focused principally on mental illness in order to serve individuals who were most severely affected. Only as the field has matured has it begun to respond to intensifying interest and concerns about disease prevention and health pro- motion. Because of the more recent consideration of these topic areas, the body of accumulated knowledge regarding them is not as expansive as that for mental illness. Mental Disorders are Disabling The burden of mental illness on health and productivity in the United States and throughout the world has long been profoundly underestimated. Data developed by the massive Global Burden of Disease study,' conducted by the World Health Organization, the World Bank, and Harvard University, reveal that mental illness, including suicide,' ranks second in the burden of disease in established market economies, such as the United States (Table l-l). Mental illness emerged from the Global Burden of Disease study as a surprisingly significant contributor to the burden of disease. The measure of calculating disease burden in this study, called Disability Adjusted Life Years (DALYs), allows comparison of the burden Table l-l. Disease burden by selected illness categories in established market economies, 1990 Percent of Total DALY& All cardiovascular conditions 16.6 All mental illness** 15.4 All malignant diseases (cancer) 15.0 All respiratory conditions 4.8 All alcohol use 4.7 All infectious and parasitic diseases 2.8 All drug use 1.5 *Disability-adjusted life year (DALY) is a measure that expresses years of life lost to premature death and years lived with a disability of specified severity and duration (Murray & Lopez, 1996). **Disease burden associated with "mental illness" includes suicide. * Murray & Lopez, 1996. * The Surgeon General issued a Call to Action on Suicide in 1999, reflecting the public health magnitude of this consequence of mental illness. The Call to Action is summarized in Figure 4-l. of disease across many different disease conditions. DALYs account for lost years of healthy life regardless of whether the years were lost to premature death or disability. The disability component of this measure is weighted for severity of the disability. For example, ,major depression is equivalent in burden to blindness or paraplegia, whereas active psychosis seen in schizophrenia is equal in disability burden to quadriplegia. By this measure, major depression alone ranked second only to ischemic heart disease in magnitude of disease burden (see Table l-2). Schizophrenia, bipolar disorder, obsessive-compuliive disorder, panic disorder, and post-traumatic stress disorder also contributed significantly to the burden represented by mental illness. Table l-2. Leading sources of disease burden in established market economies, 1990 Total DALYs Percent ' (millions) of Total All causes 98.7 1 lschemic heart disease 8.9 9.0 2 Unipolar major depression 6.7 6.8 3 Cardiovascular disease 5.0 5.0 4 Alcohol use 4.7 4.7 * 5 Road traffic accidents 4.3 4.4 Source: Murray & Lopez, 1996. Mental Health and Mental Illness: Points on a Continuum As will be evident in the pages that follow, "mental health" and "mental illness" are not polar opposites but may be thought of as points on a continuum. Mental health is a state of successful performance of mental function, resulting in productive activities, fulfilling relationships with other people, and the ability to adapt to change and to cope with adversity. Mental health is indispensable to personal well-being, family and interpersonal relationships, and contribution to community or society. It is easy to overlook the value of mental health until problems surface. Yet from early childhood until death, mental health is the springboard of thinking and communication skills, learning, emotional growth, resilience, and self-esteem. These 4 Introduction and Themes .LTc' thr ingredients of each individual's successful ;(,,,tihution to community and society. Americans are inundated with messages about success-in school, in ,1 profession. in parenting, in relationships-without L,ppr~~i~tin~ that successful performance rem On a ~~,und;ltion of mental health. Jlany ingredients of mental health may be ,dcntifiable. but mental health is not easy to define. In (hc \vords of a distinguished leader in the field of ,ncntal health prevention, ". . . built into any definition 01` \\,rllness . . . are overt and covert expressions of \ ;,llles. Because values differ across cultures as well as an,ong subgroups (and indeed individuals) within a ~uI[l~rc. the ideal of a uniformly acceptable definition ,,f the constructs is illusory" (Cowen, 1994). h other \vords. what it means to be mentally healthy is subject 10 ~nnny different interpretations that are rooted in ~~;tluc *judgments that may VW across cultures. The ~hallcnge of defining mental health has stalled the tlcvclopment of programs to foster mental health ( Scckcr. I998), although strides have been made with ~~~llncss programs for older people (Chapter 5). Mc~tclf illness is the term that refers collectively to AI diagnosable mental disorders. Mental disorders are I~caltl~ conditions that are characterized by alterations itI thinking, mood, or behavior (or some.combination ~l~crct~t') associated with distress and/or impaired lunclioning. Alzheimer's disease exemplifies a mental &\ordcr largely marked by alterations in thinking (c+xially forgetting). Depression exemplifies a ~l~nt:il disorder largely marked by alterations in mood. Xltcn[ion-deficit/hyperactivity disorder exemplifies a ~nt:~l disorder largely marked by alterations in IWhavior (overactivity) and/or thinking (inability to concentrate). Alterations in thinking, mood, or behavior contribute to a host of problems-patient distress, iVaired functioning, or heightened risk of death, pain, clihahilitYV or loss of freedom (American Psychiatric ~-\~~ociation. 1994). This report uses the term "mental health problems" t'0r hiens and symptoms of insufficient intensity or duration to meet the criteria for any mental disorder. .\lnlost everyone has experienced mental health problems in which the distress one feels matches some of the signs and symptoms of mental disorders. Mental health problems may warrant active efforts in health promotion, prevention, and treatment. Bereavement symptoms in older adults offer a case in point. Bereavement symptoms of less than 2 months' duration do not qualify as a mental disorder, according to professional manuals for diagnosis (American Psychiatric Association, 1994). Nevertheless, bereavement symptoms can be debilitating if they are left unattended. They place older people at risk for depression, which, in turn, is linked to death from suicide, heart attack, or other causes (Zisook & Shuchter, 1991,1993; Frasufe-Smithet al., 1993,1995; Conwell, 1996). Much can be done-through formal treatment or through support group participation-to ameliorate the symptoms and to avert the consequences of bereavement. In this case, early intervention is needed to address a mental health problem before it becomes a potentially life-threatening disorder. Mind and Body are Inseparable Considering health and illness as points along a continuum helps one appreciate that neither state exists in pure isolation from the other. In another but related context, everyday language tends to encourage a misperception that "mental health" or "mental illness" is unrelated to "physical health" or "physical illness." In fact, the two are inseparable. Seventeenth-century philosopher Rene Descartes conceptualized the distinction between the mind and the body. He viewed the "mind" as completely separable from the "body" (or "matter" in general). The mind (and spirit) was seen as the concern of organized religion, whereas the body was seen as the concern of physicians (Eisendrath & Feder, in press). This partitioning ushered in a separation between so-called "mental" and "physical" health, despite advances in the 20th century that proved the interrelationships between mental and physical health (Cohen & Herbert, 1996; Baum & Posluszny, 1999). Although "mind" is a broad term that has had many different meanings over the centuries, today it refers to the totality of mental functions related to thinking, mood, and purposive behavior. The mind is generally 5 Mental Health: A Report of the Surgeon General seen as deriving from activities within the brain but displaying emergent properties, such as consciousness (Fischbach, 1992; Gazzaniga et al., 1998). One reason the public continues to this day to emphasize the difference between mental and physical health is embedded in language. Common parlance continues to use the term "physical" to distinguish some forms of health and illness from "mental" health and illness. People continue to see mental and physical as separate functions when, in fact, mental functions (e.g., memory) are physical as well (American Psychiatric Association, 1994). Mental functions are carried out by the brain. Likewise, mental disorders are reflected in physical changes in the brain (Kandel, 1998). Physical changes in the brain often trigger physical changes in other parts of the body too. The racing heart, dry mouth, and sweaty palms that accompany a terrifying nightmare are orchestrated by the brain. A nightmare is a mental state associated with alterations of brain chemistry that, in turn, provoke unmistakable changes elsewhere in the body. Instead of dividing physical from mental health, the more appropriate and neutral distinction is between "mental" and "somatic" health. Somatic is a medical term that derives from the Greek word soma for the body. Mental health refers to the ' successful performance of mental functions in terms of thought, mood, and behavior. Mental disorders are those health conditions in which alterations in mental functions are paramount. Somatic conditions are those in which alterations in nonmental functions predominate. While the brain carries out all mental functions, it also carries out some somatic functions, such as movement, touch, and balance. That is why not all brain diseases are mental disorders. For example, a stroke causes a lesion in the brain that may produce disturbances of movement, such as paralysis of limbs. When such symptoms predominate in a patient, the stroke .is considered a somatic condition. But when a stroke mainly produces alterations of thought, mood, or behavior, it is considered a mental condition (e.g., dementia). The point is that a brain disease can be seen as a mental disorder or a somatic disorder depending on the functions it perturbs. The Roots of Stigma Stigmatization of people with mental disorders has persisted throughout history. It is manifested by bias, distrust, stereotyping, fear, embarrassment, anger, and/or avoidance. Stigma leads others to avoid living, ,socializing or working with, renting to, or employing people with mental disorders, especially severe disorders such as schizophrenia (Penn & Martin, 1998; Corrigan & Penn, 1999). It reduces patients' access to resources and opportunities (e.g., housing, jobs) and leads to low self-esteem, isolation, and hopelessness. It deters the public from seeking, and wanting to pay for, care. In its most overt and egregious form, stigma results in outright discrimination and abuse. More tragically, it deprives people of their dignity and interferes with their full participation in society. Explanations for stigma stem, in part, from the misguided split between mind and body first proposed by Descartes. Another source of stigma lies in the 19th- century separation of the mental health treatment system in the United States from the mainstream of health. These historical influences exert an often immediate influence on perceptions and behaviors in the modem world. Separation of Treatment Systems In colonial times in the United States, people with mental illness were described as "lunaticks" and were largely cared for by families. There was no concerted effort to treat mental illness until urbanization in the early 19th century created a societal problem that previously had been relegated to families scattered among small rural communities. Social policy assumed the form of isolated asylums where persons with mental illness were administered the reigning treatments of the era. By the late 19th century, mental illness was thought to grow "out of a violation of those physical, mental and moral laws which, properly understood and obeyed, result not only in the highest development of the race, but the highest type of civilization" (cited in Grob, 1983). Throughout the history of institutionalization in asylums (later renamed mental hospitals), reformers strove to improve treatment and curtail abuse. Several waves of reform culminated in 6 Introduction and Themes [he deinstitutionalization movement that began in the I 950s with the goal of shifting patients and care to the community. public Affifudes About Mental /ihess: 1950s to 1990s Sationally representative surveys have tracked public attitudes about mental illness since the 1950s (StU, 195:. 1955; Gurin et al., 1960; Veroff et al., 1981). To pcrlnit comparisons over time, several surveys of the 1 970s and the 1990s phrased questions exactly as they had been asked in the 1950s (Swindle et al., 1997). ln the 195Os, the public viewed mental illness as a ,tigInatized condition and displayed an unscientific understanding of mental illness. Survey respdndents typically were nbt able to identify individuals as "mentally ill" when presented with vignettes of individuals who would have been said to be mentally ill according to the professional standards of the day. The public was not particularly skilled at distinguishing mental illness from ordinary unhappiness and worry and tended to see only extreme forms of be- havior-namely psychosis-as mental illness. Mental illness carried great social stigma, especially linked with fear of unpredictable and violent behavior (Star, 1952, 1955; Gurin et al., 1960; Veroff et al., 1981). By 1996, a modem survey revealed that Americans had achieved greater scientific understanding of mental illness. But the increases in knowledge did not defuse social stigma (Phelan et al., 1997). The public learned to define mental illness and to distinguish it from ordinary worry and unhappiness. It expanded its definition of mental illness to encompass anxiety, depression, and other mental disorders. The public attributed mental illness to a mix of biological abnormalities and vulnerabilities to social and phychological stress (Link et al., in press). Yet, in comparison with the 195Os, the public's perception of mental illness more frequently incorporated violent behavior (Phelan et al., 1997). This was primarily true among those who defined mental illness to include psychosis (a view held by about one-third of the entire sample). Thirty-one percent of this group mentioned violence in its descriptions of mental illness, in comparison with 13 percent in the 1950s. In other words, the perception of people with psychosis as being dangerous is stronger today than in the past (Phelan et al., 1997). The 1996 survey also probed how perceptions of those with mental illness varied by diagnosis. The public was more likely to consider an individual with schizophrenia as having mental illness than an individual with depression. All of them were distinguished reasonably well from a worried and unhappy individual who did not meet professional criteria for a mental disor&r. The desire for social distance was consistent with this hierarchy (Link et al., in press). Why is stigma so strong despite better public understanding of mental illness? The answer appears to be fear of violence: people with mental illness, especially those with psychosis, are perceived to be more violent than in the past (Phelan et al., 1997). This finding begs yet another question: Are people with mental disorders truly more violent? Research supports some public concerns, but the overall likelihood of violence is low. The greatest risk of violence is from those who have dual diagnoses, i.e., individuals who have a mental disorder as well as a substance abuse disorder (Swanson, 1994; Eronen et al., 1998; Steadman et al., 1998). There is a small elevation in risk of violence from individuals with severe mental disorders (e.g., psychosis), especially if they are noncompliant with their medication (Eronen et al., 1998; Swartz et al., 1998). Yet the risk of violence is much less for a stranger than for a family member or person who is known to the person with mental illness (Eronen et al., 1998). Infact, there is very little risk of violence or harm to a stranger from casual contact with an individual who has a mental disorder. Because the average person is ill-equipped to judge whether someone who is behaving erratically has any of these disorders, alone or in combination, the natural tendency is to be wary. Yet, to put this all in perspective, the overall contribution of mental disorders to the total level of violence in society is exceptionally small (Swanson, 1994). 7 Mental Health: A Report of the Surgeon General Because most people should have little reason to fear violence from those with mental illness, even in its most severe forms, why is fear of violence so entrenched? Most speculations focus on media coverage anddeinstitutionalization (Phelan et al., 1997; Heginbotham, 1998). One series of surveys found that selective media reporting reinforced the public's stereotypes linking violence and mental illness and encouraged people to distance themselves from those with mental disorders (Angermeyer & Matschinger, 1996). And yet, deinstitutionalization made this distancing impossible over the 40 years as the population of state and county mental hospitals- was reduced from a high of about 560,000 in 1955 to well below 100,000 by the 1990s (Bachrach, 1996). Some advocates of deinstitutionalization expected stigma to be reduced with community care and commonplace exposure. Stigma might have been greater today had not public education resulted in a more scientific understanding of mental illness. Stigma and Seeking Help for Mental Disorders Nearly two-thirds of all people with diagnosable mental disorders do not seek treatment (Regier et al., 1993; Kessler et al., 1996). Stigma surrounding.the receipt of mental health treatment is among the many barriers that discourage people from seeking treatment (Sussman et al., 1987; Cooper-Patrick et al., 1997). Concern about stigma appears to be heightened in rural areas in relation to larger towns or cities (Hoyt et al., 1997). Stigma also disproportionately affects certain age groups, as explained in the chapters on children and older people. Stigma and Paying for Mental Disorder Treatment Another manifestation of stigma is reflected in the public's reluctance to pay for mental health services. Public willingness to pay for mental health treatment, particularly through insurance premiums or taxes, has been assessed largely through public opinion polls. Members of the public report a greater willingness to pay for insurance coverage for'individuals with severe mental disorders, such as schizophrenia and depression, rather than for less severe conditions such as worry and unhappiness (Hanson, 1998). While the public generally appears to support paying for treatment, its support diminishes upon the realization that higher taxes or premiums would be necessary (Hanson, 1998). In the lexicon of survey research, the willingness to pay for mental illness treatment services is considered to be "soft." The public generally ranks insurance coverage for mental disorders below that for somatic disorders (Hanson, 1998). 8 The surveys cited above concerning evolving public attitudes about mental illness also monitored how people would cope with, and seek treatment for, mental illness if they became symptomatic. (The term "nervous breakdown" was used in lieu of the term "mental illness" in the 1996 survey to allow for comparisons with the surveys in the 1950s and 1970s.) The 1996 survey found that people were likelier than in the past to approach mental illness by coping with, rather than by avoiding, the problem. They also were more likely now to want informal social supports (e.g., self-help groups). Those who now sought form-d support increasingly preferred counselors, psychologists, and social workers (Swindle et al., 1997). Reducing Stigma There is likely no simple or single panacea to eliminate the stigma associated with mental illness. Stigma was expected to abate with increased knowledge of mental illness, but just the opposite occurred: stigma in some ways intensified over the past 40 years even though understanding improved. Knowledge of mental illness appears by itself insufficient to dispel stigma (Phelan et al., 1997). Broader knowledge may be warranted, especially to redress public fears (Penn & Martin, 1998). Research is beginning to demonstrate that negative perceptions about severe mental illness can be lowered by furnishing empirically based information on the association between violence and severe mental illness (Penn & Martin, 1998). Overall approaches to stigma reduction involve programs of advocacy, public education, and contact with persons with mental illness through schools and other societal institutions (Conigan & Penn, 1999). Another way to eliminate stigma is to find causes 3nd effective treatments for mental disorders (Jones, ,998). History suggests this to be true. Neurosyphilis and petlagra are illustrative of mental disorders for \vhich stigma has receded. In the early part of this srntury. about 20 percent of those admitted to mental ho5Pitats had "general paresis," later identified as tcniary syphilis (Grob, 1994). This advanced stage of ,yPhitis occurs when the bacterium invades the brain rind causes neurological deterioration (including P\ychosis). paralysis, and death. The discoveries of an infectious etiology and of penicillin led to the virtual elimination of neurosyphilis. Similarly, when pellagra \v;ts traced to a nutrient deficiency, and nutritional ,upplementation with niacin was introduced, the cnndition was eventually eradicated in the developed \vorld. Pellagra's victims with delirium had been placed in mental hospitals early in the 20th century before its etiology was clarified. Although no one has documented directly the reduction of public stigma reward these conditions over the early and later parts of this century, disease eradication through widespread acceptance of treatment (and its cost) offers indirect Proof. Ironically, these examples also illustrate a more unsettling consequence: that the mental health field was :ttlvcrsely affected when causes and treatments were identified. As advances were achieved, each condition \~;Is transferred from the mental health field to another medical specialty (Grob, 1991). For instance, dominion over syphilis was moved to dermatology, internal medicine, and neurology upon advances in etiology and treatment. Dominion over hormone-related mental disorders was moved to endocrinology under similar circumstances. The consequence of this transformation, according to historian Gerald Grob, is that the mental health field became over the years the repository for mental disorders whose etiology was unknown. This left the mental health field "vulnerable to accusations by their medical brethren that psychiatry was not part of medicine, and that psychiatric practice rested on \uPerstition and myth" (Grob, 1991). These historical examples signify that stigma dissipates for individual disorders once advances Introduction and Themes render them less disabling, infectious, or disfiguring. Yet the stigma surrounding other mental disorders not only persists but may be inadvertently reinforced by leaving to mental health care only those behavioral conditions without known causes or cures. To point this out is not intended to imply that advances in mental health should be halted; rather, advances should be nurtured and heralded. The purpose here is to explain some of the historical origins of the chasm between the health and mental health fields. Stigma must be overcome. Research that will continue to yield increasingly effective treatments for mental disorders promises ti, be an effective antidote. When people understand that mental disorders are not the result of moral failings or limited will power, but are legitimate illnesses that are responsive to specific treatments, much of the negative stereotyping may dissipate. Still, fresh approaches to disseminate research information and, thus, to counter stigma need to be developed and evaluated. Social science research has much to contribute to the development and evaluation of anti-stigma programs (Corrigan & Penn, 1999). As stigma abates, a transformation in public attitudes should occur. People should become eager to seek care. They should become more willing to absorb its cost. And, most importantly, they should become far more receptive to the messages that are the subtext of this report: mental health and mental illness are part of the mainstream of health, and they are a concern for all people. The Science Base of the Report Reliance on Scientific Evidence The statements and conclusions throughout this report are documented by reference to studies published in the scientific literature. For the most part, this report cites studies of empirical-rather than theoretical-research, peer-reviewed journal articles including reviews that integrate findings fromnumerous studies, and books by recognized experts. When a study has been accepted for publication but the publication has not yet appeared, owing to the delay between acceptance and final publication, the study is referred to as "in press." The 9 Mental Health: A Report of the Surgeon General report refers, on occasion, to unpublished research by means of reference to a presentation at a professional meeting or to a "personal communication" from the researcher, a practice that also is used sparingly in professional journals. These personal references are to acknowledged experts whose research is in progress. Research Methods Quality research rests on accepted methods of testing hypotheses. Two of the more common research methods used in the mental health field are experimental research and correlational research. Experimental research is the preferred method for assessing causation but may be too difficult or too expensive to conduct. Experimental research strives to discover cause andeffect relationships, such as whether a new drug is effective for treating a mental disorder. In an experimental study, the investigator deliberately introduces an intervention to. determine its conse- quences (i.e., the drug's efficacy). The investigator sets up an experiment comparing the effects of giving the new drug to one group of people, the experimental group, while giving a placebo (an inert pill) to another group, the so-called control group. The incorporation of a control group rules out the possibility that something other than the experimental treatment (i.e., the new drug) produces the results. The difference in outcome between the experimental and control group-which, in this case, may be the reduction or elimination of the symptoms of the disorder-then can be causally attributed to the drug. Similarly, in an experimental study of a psychological treatment, the experimental group is given a new type of psychotherapy, while the control or comparison group receives either no psychotherapy or a different form of psychotherapy. With both pharmacological and psychological studies, the best way to assign study participants, called subjects, either to the treatment or the control (or comparison) group is by assigning them randomly to different treatment groups. Randomization reduces bias in the results. An experimental study in humans with randomization is called a randomized controlled trial. Correlational research is employed when experimental research is logistically, ethically, or financially impossible. Instead of deliberately introducing an intervention, researchers observe relationships to uncover whether two factors are associated, or correlated. Studying the relationship between stress and depression is illustrative. It would be unthinkable to introduce seriously stressful events to see if they cause depression. A correlational study in this case would compare a group of people already experiencing high levels of stress with another group experiencing low levels of stress to determine whether the high-stress group is more likely to develop depression. If this happens, then the results would indicate that high levels of stress are associated with depression. The limitation of this type of study is that it only can be used to establish associations, not cause and effect relationships. (The positive relationship between stress and depression is discussed most thoroughly in Chapter 4.) Controlled studies-that is, studies with control or comparison groups-are considered superior to uncontrolled studies. But not every question in mental health can be studied with a control or comparison group. Findings from an uncontrolled study may be better than no information at all. An uncontrolled study also may be beneficial in generating hypotheses or in testing the feasibility of an intervention. The results presumably would lead to a controlled study. In short, uncontrolled studies offer a good starting point but are never conclusive by themselves. levels of Evidence In science, no single study by itself, however well designed, is generally considered sufficient to establish causation. The findings need to be replicated by other investigators to, gain widespread acceptance by the scientific community. The strength of the evidence amassed for any scientific fact or conclusion is referred to as "the level of evidence." The level of evidence, for example, to justify the entry of a new drug into the marketplace has to be substantial enough to meet with approval by the U.S. Food and Drug Administration (FDA). According to U.S. drug law, a new drug's safety and efficacy must be established through controlled clinical trials 10 Introduction and Themes ;,,uducted by the drug's manufacturer or sponsor , l~D.4. 1998). The FDA's decision to approve a drug rcpr,=sents the culmination of a lengthy, research- ,utcusive process of drug development, which often consumes years of animal testing followed by human clinical trials (DiMasi & Lasagna, 1995). The FDA requires three phases of clinical trials3 before a new drug can be approved for marketing (FDA, 1998). With psychotherapy, the level of evidence similarly ,llust be high. Although there are no formal Federal laLvs governing which psychotherapies can be iutroduced into practice, professional groups and cspees in the field strive to assess the level of evidence ill 3 giveu area through task forces, review articles, and otbcr methods for evaluating the body of published \tudies on a topic. This Surgeon General's report is replete with references to such evaluations. One of the most prominent series of evaluations was set in motion hy a group within the American Psychological :\ssociation (APA), one of the main professional organizations of psychologists. Beginning in the mid- I WOs. the APA's Division of Clinical Psychology convened task forces with the objective of establishing which psychotherapies were of proven efficacy. To guide their evaluation, the first task force created a set ol`critcria that also was used or adapted by subsequent Iask forces. The first task force actually developed two ~1s of criteria: the first, and more rigorous, set of ukria was for Well-Established Treatments, while the ()[kr set was for Probably Eficacious Treatments t Chumbless et al., 1996). For a psychotherapy to be ~11 established, at least two experiments with group designs or similar types of studies must have been published to demonstrate efficacy. Chapters 3 through 5 of this report describe the findings of the task forces in relation to psychotherapies for children, adults, and older adults. Some types of psychotherapies that do not meet the criteria might be effective but may not have been studied sufficiently. ' The first phase is to establish safety (Phase I), while the latter two phases establish efficacy through small and then large-scale randomized controlled clinical trials (Phases II and III) (FDA, 1998). Another way of evaluating a collection of studies is through a formal statistical technique called a meta- analysis. A meta-analysis is a way of combining results from multiple studies. Its goal is to determine the size and consistency of the "effect" of a particular treatment or other intervention observed across the studies. The statistical technique makes. the results of different studies comparable so that an overall "effect size" for the treatment can be identified. A meta-analysis determines if there is consistent evidence of a statistically significant effect of a specified treatment and estimates the size of the effect, according to widely accepted standards for a small, medium, or large effect. Overview of the Report's Chapters The preceding sections have addressed overarching themes in the body of the report. This section provides a brief overview of the entire report, including a description of its general orientation and a summary of key conclusions drawn from each chapter. Chapter 2 begins with an overview of research under way today that is focused on the brain and behavior in mental health and mental illness. It explains how newer approaches to neuroscience are mending the mind-body split, which for so long has been a stumbling block to understanding the relationship of the brain to behavior, thought, and emotion. Modem integrative neuroscience offers a means of linking research on broad "systems-level" aspects of brain function with the remarkably detailed tools and findings of molecular genetics. There follows an overview of mental illness that highlights topics including symptoms, diagnosis, epidemiology (i.e., research having to do with the distribution and determinants of mental disorders in population groups), and cost, all of which are discussed in the context of specific disorders throughout the report. The section on etiology reviews research that is seeking to define, with ever greater precision, the causes of mental illnesses. As will be seen, etiology research must examine fundamental biological and behavioral processes, as well as a necessarily broad array of life events. No less than research on normal healthy development, etiological research underscores the inextricability of 11 Mental Health: A Report of the Surgeon General nature and nurture, or biological and psychosocial influences, in mental illness. The section on development of temperament reveals how mental health research has attempted over much of the past century to understand how biological, psychological, and sociocultural factors meld in health as well as illness. The chapter then reviews research approaches to the prevention and treatment of mental disorders and provides an overview of mental health services and their delivery. Final sections cover the growing influence on the mental health field of cultural diversity, the importance of consumerism, and new optimism about recovery from mental illness. Chapters 3,4, and 5 capture the breadth, depth, and vibrancy of the mental health field. The chapters probe mental health and, mental illness in children and adolescents, in adulthood (i.e., in persons up to ages 55 to 65), and in older adults, respectively. This life span approach reflects awareness that-mental health, and the brain and behavioral disorders that impinge upon it, are dynamic, ever-changing phenomena that, at any given moment, reflect the sum total of every person's genetic inheritance and life experiences. The brain is extraordinarily "plastic," or malleable. It interacts with and responds-both in its function and in its very structure-to multiple influences continuously, across every stage of life. Variability in expression of mental health and mental illness over the life span can be very subtle or very pronounced. As an example, the symptoms of separation anxiety are normal in early childhood but are signs of distress in later childhood and beyond. It is all too common for people to appreciate the impact of developmental processes in children yet not to extend that conceptual understanding to older people. In fact, older people continue to develop and change. Different stages of life are associated with distinct forms of mental and behavioral disorders and with distinctive capacities for mental health. With rare exceptions, few persons are destined to a life marked by unremitting, acute mental illness. The most severe, persistent forms of mental illness tend to be amenable to treatment, even when recurrent and episodic. As conditions wax and wane, opportunities exist for interventions. The goal of an intervention at any given time may vary. The focus may be. on recovery, prevention of recurrence, or the acquisition of knowledge or skills that permit more effective management of an illness. Chapters 3 through 5 cover a uniform list of topics most relevant to each age cluster. Topics include mental health; prevention, diagnosis, and treatment of mental illness; service delivery; and other services and supports. It would be impractical for a report of this type to attempt to address every domain of mental health and mental illness; therefore, this report casts a spotlight on selected topics in each of Chapters 3 through 5. The various disorders featured in Depth in a given chapter were selected on the basis of their prevalence and the clinical, societal, and economic burden associated with each. To the extent that data permit, the report takes note of how gender and culture, in addition to age, influence the diagnosis, course, and treatment of mental illness. The chapters also note the changing role of consumers and families, with attention to informal support services (i.e., unpaid services) with which patients are so comfortable (Phelan et al., 1997) and upon which they depend for information. Patients and families welcome a proliferating array of support services-such as self-help programs, family self-help, crisis services, and advocacy-that help them cope with the isolation, family disruption, and possible loss of employment and housing that may accompany mental disorders. Support services can help dissipate stigma and guide patients into formal care as well. Although the chapters that address stages of development afford a sense of the breadth of issues pertinent to mental health and illness, the report is not exhaustive. The neglect of any given disorder, population, or topic should not be construed as signifying a lack of importance. Chapter 6 discusses the organization and financing of mental health services. The first section provides an overview of the current system of mental health services, describing where people get care and how they use services. The chapter then presents information on the costs of care and trends in spending. Only within recent decades have the dynamics of 12 Introduction and Themes ,I,4ur3nce financing become a significant issue in the I,,ental health field; these are discussed, as is the advent ,,t managed care. The chapter addresses both positive .,,,d adverse effects of managed care on access and qudlity and describes efforts to guard against untoward Lon\cquences of aggressive cost-containment policies. The final section documents some of the inequities bettVeen general health care and mental health care and &,cribes efforts to correct them through legislative regulation and financing changes. The confidentiality of all health care information has emerged as a core issue in recent years, as concerns regarding the accessibility of health care information & its uses have risen. As Chapter 7 illustrates, privacy c(Juccrns are particularly keenly felt in the `mental tlcdth field, beginning with the importance of an ;l\surance of confidentiality in individual decisions to \cck mental health treatment. The chapter reviews the kyal I'rumework governing confidentiality and potential prohlcms with that framework, and policy issues that must be addressed by those concerned with the ~oul`idcntiality of mental health and substance abuse iril~ormation. Chapter 8 concludes, on the basis of the extensive literature that the Surgeon General's reportreviews and 4umm;lrizes, that the efficacy of mentul health treatment is well-documented. Moreover, there exists :I range of treatments from which people may choose a t';lrticular approach to suit their needs and preferences. 1i:~d on this finding, the report's principal recommendation to the American people is to seek help if YOU have a mental health problem or think you IlaVe SYWtoms of mental illness. The chapter explores TPofiunities to overcome barriers to implementing the recommendation and to have seeking help lead to dfective treatment. Chapter Conclusions Chapter 2: The Fundamentals of Mental Health and Mental Illness The past 25 years have been marked by several discrete, defining trends in the mental health field. These have included: 1. The extraordinary pace and productivity of scientific research on the brain and behavior; 2. The introduction of a range of effective treatments for most mental disorders; 3. A dramatic transformation of our society's approaches to the organization and financing of mental health care; and 4. The emergence of powerful consumer and family movements. Scientific Research. The brain has emerged as the central focus for studies of mental health and mental illness. New scientific disciplines, technologies, and insights have begun to weav'e a seamless picture of the way in which the brain mediates the influence of biological, psychological, and social factors on human thought, behavior, and emotion in health and in illness. Molecular and cellular biology and molecular genetics, which are complemented by sophisticated cognitive and behavioral sciences, are preeminent research disciplines in the contemporary neuroscience of mental health. These disciplines are affording unprecedented opportunities for "bottom-up" studies of the brain. This term refers to research that is examining the workings of the brain at the most fundamental levels. Studies focus, for example, on the complex neurochemical activity that occurs within individual nerve cells, or neurons, to process information; on the properties and roles of proteins that are expressed, or produced, by a person's genes; and on the interaction of genes with diverse environmental influences. All of these activities now are understood, with increasing clarity, to underlie learning, memory, the experience of emotion, and, when these processes go awry, the occurrence of mental illness or a mental health problem. Equally important to the mental health field is "top- down" research; here, as the term suggests, the aim is to understand the broader behavioral context of the brain's cellular and molecular activity and to learn how individual neurons work together in well-delineated neural circuits to perform mental functions. ESfective Treatments. As information accumulates about the basic workings of the brain, it is the task of translational research to transfer new knowledge into clinically relevant questions and targets of research 13 Mental Health: A Report of the Surgeon General opportunity-to discover, for example, what specific properties of a neural circuit might make it receptive to safer, more effective medications. To elaborate on this example, theories derived from knowledge about basic brain mechanisms are being wedded more closely to brain imaging tools such as functional Magnetic Resonance Imaging (MRI) that can observe actual brain activity. Such a collaboration would permit investi- gators to monitor the specific protein molecules intended as the "targets" of a new medication to treat a mental illness or, indeed, to determine how to optimize the effect on the brain of the learning achieved through psychotherapy. In its entirety, the new "integrative neuroscience" of mental health offers a way to circumvent the antiquated split between the mind and the body that historically has hampered mental health research. It also makes it possible to examine scientifically many of the important psychological and behavioral theories regarding normal development and mental illness that have been developed in years past. The unswerving goal of mental health research is to develop and refine clinical treatments as well as preventive interventions that are based on an understanding of specific mechanisms that can contribute to or lead to illness but also can protect and enhance mental health. Mental health clinical research encompasses studies that involve human participants, conducted, for example, to test the efficacy of a new treatment. A noteworthy feature of contemporary clinical research is the new emphasis being placed on studying the effectiveness of interventions in actual practice settings. Information obtained from such studies increasingly provides the foundation for services research concerned with the cost, cost-effectiveness, and "deliverability" of interventions and the design-including economic considerations-of ser- vice delivery systems. Organization and Financing of Mental Health Care. Another of the defining trends has been the transformation of the mental illness treatment and mental health services landscapes, including increased reliance on primary health care and other human service providers. Today, the U.S. mental health system is multifaceted and complex, comprising the public and private sectors, general health and specialty mental health providers, and social services, housing, criminal justice, and educational agencies. These agencies do not always function in a coordinated manner. Its configuration reflects necessary responses to a broad array of factors including reform movements, financial incentives based on who pays for what kind of services, and advances in care and treatment technology. Although the hybrid system that exists today serves diverse functions well for many people, individuals with the most complex need? and the fewest financial resources often find the system fragmented and difficult to use. A challenge for the Nation in the near- term future is to speed the transfer of new evidence- based treatments and prevention interventions into diverse service delivery settings and systems, while ensuring greater coordination among these settings and systems. Consumer and Family Movements. The emergence of vital consumer and family movements promises to shape the direction and complexion of mental health programs for many years to come. Although divergent in their historical origins and philosophy, organizations representing consumers and family members have promoted important, often overlapping goals and have invigorated the fields of research as well as treatment and service delivery design. Among the principal goals shared by much of the consumer movement are to overcome stigma and prevent discrimination in policies affecting persons with mental illness: to encourage self- help and a focus on recovery from mental illness; and to draw attention to the special needs associated with a particular disorder or disability, as well as by age or gender or by the racial and cultural identity of those who have mental illness. Chapter 2 of the report was written to provide background information that would help persons from outside the mental health field better understand topics addressed in subsequent chapters of the report. Although the chapter is meant to serve as a mental health primer, its depth of discussion supports a range of conclusions: 14 Introduction and Themes , . The multifaceted complexity Of the brain iS fully consistent with the fact that it SUPPOSES all behavior and mental life. Proceeding from an ,chowledgment that all psychological experiences are recorded ultimately in the brain and that all ps~chologicaI phenomena reflect biological processes, the modem neuroscience of mental health offers an enriched understanding of the inseparability of human experience, brain, and mind. 2. .Mental functions, which are disturbed in mental disorders, are mediated by the brain. In the process of transforming human experience into physical events, the brain undergoes changes in its cellular structure and function. 3. Few lesions or physiologic abnormalities define the mental disorders, and for the most part their causes remain unknown. Mental disorders, instead, are defined by signs, symptoms, and functional impairments. J. Diagnoses of mental disorders made using specific criteria are as reliable as those for general medical disorders. 5. About one in five Americans experiences a mental disorder in the course of a year. Approximately 15 percent of all adults who have a mental disorder in one year also experience a co-occurring substance (alcohol or other drug) use disorder, which complicates treatment. 6. A range of treatments of well-documented efficacy exists for most mental disorders. Two broad types of intervention include psychosocial treat- ments -for example, psychotherapy or counseling-and psychopharmacologic treatments; these often are most effective when combined. 7. In the mental health field, progress in developing Preventive interventions has been slow because, for most major mental disorders, there is insufficient understanding about etiology (or causes of illness) andor there is an inability to alter the known etiology of a particular disorder. Still, some successful strategies have emerged in the absence of a full understanding of etiology. 8. About 10 percent of the U.S. adult population use mental health services in the health sector in any year, with another 5 percent seeking such services from social service agencies, schools, or religious or self-help groups. Yet critical gaps exist between those who need service and those who receive service. 9. Gaps also exist between optimally effective treatment and what many individuals receive in actual practice settings. 10. Mental illness and less severe mental health problems must be understood in a social and cultural context, and mental health services must be designed and delivered in a manner that is sensitive to the perspectives and needs of racial and ethnic minorities. 11. The consumer movement has increased the involvement of individuals with mental disorders and their families in mutual support services, consumer-run services, and advocacy. They are powerful agents for changes in service programs and policy. 12. The notion of recovery reflects renewed optimism about the outcomes of mental illness, including that achieved through an individual's own self-care efforts, and the opportunities open to persons with mental illness to participate to the full extent of their interests in the community of their choice. Mental Health and Mental illness Across the Lifespan The Surgeon General's report takes a lifespan ap- proach to its consideration of mental health and mental illness. Three chapters that address, respectively, the periods of childhood and adolescence, adulthood, and later adult life beginning somewhere between ages 55 and 65, capture the contributions of research to the breadth, depth, and vibrancy that characterize all facets of the contemporary mental health field. The disorders featured in depth in Chapters 3, 4, and 5 were selected on the basis of the frequency with which they occur in our society, and the clinical, societal, and economic burden associated with each. To the extent that data permit, the report takes note of how 15 Mental Health: A Report of the Surgeon General gender and culture, in addition to age, influence the diagnosis, course, and treatment of mental illness. The chapters also note the changing role of consumers and families, with attention to informal support services (i.e., unpaid services), with which many consumers are comfortable and upon which they depend for information. Persons with mental illness and, often, their families welcome a proliferating array of support services-such as self-help programs, family self-help, crisis services, and advocacy-that help them cope with the isolation, family disruption, and possible loss of employment and housing that may accompany mental disorders. Support services can help to dissipate stigma and to guide patients into formal care as well. Mental health and mental illness are dynamic, ever- changing phenomena. At any given moment, a person's mental status reflects the sum total of that individual's genetic inheritance and life experiences. The brain interacts with and responds-both in its function and in its very structure- to multiple influences continuously, across every stage of life. At different stages, variability in expression of mental health and mental illness can be very subtle or very pronounced. As an example, the symptoms of separation anxiety are normal in early childhood but are signs of distress in later childhood and beyond. It is all too common for people to appreciate the impact of developmental processes in children, yet not to extend that conceptual understanding to older people. In fact, people continue to develop and change throughout life. Different stages of life are associated with vulnerability to distinct forms of mental and behavioral disorders but also with distinctive capacities for mental health. Even more than is true for adults, children must be seen in the context of their social environments-that is, family and peer group, as well as that of their larger physical and cultural surroundings, Childhood mental health is expressed in this context, as children proceed along the arc of development. A great deal of contemporary research focuses on developmental processes, with the aim of understanding and predicting the forces that will keep children and adolescents mentally healthy and maintain them on course to become mentally healthy adults. Research also focuses on identifying what factors place some at risk for mental illness and, yet again, what protects some children but not others despite exposure to the same risk factors. In addition to studies of normal development and of risk factors, much research focuses on mental disorders in childhood and adolescence and what can be done to prevent or treat these conditions and on the design and operation of service settings best suited to the needs experienced by children. For about one in five Americans, adulthood-a time for achieving productive vocations and for sustaining close relationships at home and in the community-is interrupted by mental illness. Understanding why and how mental disorders occur in adulthood, often with no apparent portents of illness in earlier years, draws heavily on the full panoply of research conducted under the aegis of the mental health field. In years past, the onset, or occurrence, of mental illness in the adult years, was attributed principally to observable phenomena-for example, the burden of stresses associated with career or family, or the inheritance of a disease viewed to run in a particular family. Such explanations now may appear naive at best. Contemporary studies of the brain and behavior are racing to fill in the picture by elucidating specific neurobiological and genetic mechanisms that are the platform upon which a person's life experiences can either strengthen mental health or lead to mental illness. It now is recognized that factors that influence brain development prenatally may set the stage for a vulnerability to illness that may lie dormant throughout childhood and adolescence. Similarly, no single gene has been found to be responsible for any specific mental disorder; rather, variations in multiple genes contribute to a disruption in healthy brain function that, under certain environmental conditions, results in a mental illness. Moreover, it is now recognized that socioeconomic factors affect individuals' vulnerability to mental illness and mental health problems. Certain demographic and economic groups are more likely than others to experience mental health problems and some mental disorders. Vulnerability alone may not be sufficient to cause a mental disorder; rather, the causes of most mental disorders lie in some combination of 16 Introduction and Themes ,,enetic and environmental factors, which may be biological or psychosocial. The fact that many, if not most, peOpk have esperienced mental health problems that mimic or even match some of the symptoms of a diagnosable mental disorder tends, ironically, t0 PrOrIlpt many people t0 underestimate the painful, disabling nature of severe mental illness. In fact, schizophrenia, mood disorders ,uch as major depression and bipolar illness, and anxiety often are devastating conditions. Yet relatively fe\v mental illnesses have an unremitting course mark- ed by the most acute manifestations of illness; rather, for reasons that are not yet understood, the symptoms ;tssociated with mental illness tend to wax and wane. These patterns pose special challenges to the implementation of treatment plans and the design of service systems that are optimally responsive to an individual's needs during every phase of illness. As this report concludes, enormous strides are being made in diagnosis, treatment, and service delivery, placing the productive and creative possibilities of adulthood within the reach of persons who are encumbered by mental disorders. Late adulthood is when changes in health status may become more noticeable and the ability to compensate for decrements may become limited. As the brain ages, a person's capacity for certain mental tasks tends to diminish, even as changes in other mental activities prove to be positive and rewarding. Well into late life, the ability to solve novel problems can be enhanced through training in cognitive skills and problem-solving strategies. The promise of research on mental health Promotion notwithstanding, a substantial minority of older people are disabled, often severely, by mental disorders including Alzheimer's disease, major depression, substance abuse, anxiety, and other conditions. In the United States today, the highest rate of suicide-an all-too-common consequence of unrecognized or inappropriately treated depression-is found in older males. This fact underscores the urgency of ensuring that health care provider training properly emphasizes skills required to differentiate accurately me causes of cognitive, emotional, and behavioral symptoms that may, in some instances, rise to the level of mental disorders, and in other instances be expressions of unmet general medical needs. As the life expectancy of Americans continues to extend, the sheer number-although not necessarily the proportion--of persons experiencing mental disorders of late life will expand, confronting our society with unprecedented challenges in organizing, financing, and delivering effective mental health services for this population. An essential part of the needed societal response will include recognizing and devising innovative ways of support@g the increasingly more prominent role that families are assuming in caring for older, mentally impaired and mentally ill family members. Chapter 3: Children and Mental Health 1. Childhood is characterized by periods of transition and reorganization, making it critical to assess the mental health of children and adolescents in the context of familial, social, and cultural expectations about age-appropriate thoughts, emotions, and behavior. 2. The range of what is considered "normal" is wide; still, children and adolescents can and do develop mental disorders that are more severe than the "ups and downs" in the usual course of development. 3. Approximately one in five children and adolescents experiences the signs and symptoms of a DSM-IV disorder during the course of a year, but only about 5 percent of all children experience what professionals term "extreme functional impair- ment." 4. Mental disorders and mental health problems appear in families of all social classes and of all backgrounds. No one is immune. Yet there are children who are at greatest risk by virtue of a broad array of factors. These include physical problems; intellectual disabilities (retardation); low birth weight; family history of mental and addictive disorders; multigenerational poverty; and caregiver separation or abuse and neglect. 5. Preventive interventions have been shown to be effective in reducing the impact of risk factors for 17 Mental Health: A Report of the Surgeon General mental disorders and improving social and emotional development by providing, for example, educational programs for young children, parent- education programs, and nurse home visits. 6. A range of efficacious psychosocial and pharmacologic treatments exists for many mental disorders in children, including attention- deficit/hyperactive disorder, depression, and the disruptive disorders. 7. Research is under way to demonstrate the effectiveness of most treatments for children in actual practice settings (as opposed to evidence of "efficacy" in controlled research settings), and significant barriers exist to receipt of treatment. 8. Primary care and the schools are major settings for the potential recognition of mental disorders in children and adolescents, yet trained staff are limited, as are options for referral to specialty care. 9. The multiple problems associated with "serious emotional disturbance" in children and adolescents are best addressed with a "systems" approach in which multiple service sectors work in an organized, collaborative way. Research on the effectiveness of systems of care shows positive results for system outcomes and functional outcomes for children; however, the relationship between changes at the system level and clinical outcomes is still unclear. 10. Families have become essential partners in the delivery of mental health services for children and adolescents. 11. Cultural differences exacerbate the general problems of access to appropriate mental health services. Culturally appropriate services have been designed but are not widely available. Chapter 4: Adults and Mental Health 1. As individuals move into adulthood, develop- mental goals focus on productivity and intimacy including pursuit of education, work, leisure, creativity, and personal relationships. Good mental health enables individuals to cope with adversity while pursuing these goals. 2. Untreated, mental disorders can lead to lost productivity, unsuccessful relationships, and significant distress and dysfunction. Mental illness in adults can have a significant and continuing effect on children in their care. 3. Stressful life events or the manifestation of mental illness can disrupt the balance adults seek in life and result in distress and dysfunction. Severe or life-threatening trauma experienced either in childhood or adulthood can further provoke emotional and behavioral reactions that jeopardize mental health. 4. Research has improve3 our understanding of mental disorders in the adult stage of the life cycle. Anxiety, depression, and schizophrenia, particularly, present special problems in this age group. Anxiety and depression contribute to the high rates of suicide in this population. Schizophrenia is the most persistently disabling condition, especially for young adults, in spite of recovery of function by some individuals in mid to late life. 5. Research has contributed to our ability to recognize, diagnose, and treat each of these conditions effectively in terms of symptomcontrol and behavior management. Medication and other therapies can be independent, combined, or sequenced depending on the individual's diagnosis and personal preference. 6. A new recovery perspective is supported by evidence on rehabilitation and treatment as well as by the personal experiences of consumers. 7. Certain common events of midlife (e.g., divorce or other stressful life events) create mental health problems (not necessarily disorders) that may be addressed through a range of interventions. 8. Care and treatment in the real world of practice do not conform to what research determines is best. For many reasons, at times care is inadequate, but there are models for improving treatment. 9. Substance abuse is a major co-occurring problem for adults with mental disorders. Evidence supports combined treatment, although there are substantial 18 gaps between what research recommends and what typically is available in communities. ,o, Sensitivity to culture, race, gender, disability, poverty. and the need for consumer involvement are important considerations for care and treatment. ,I. Bat-tiers of access exist in the organization and financing of services for adults. There are specific problems with Medicare, Medicaid, income supp~m, housing, and managed care. Chapter 5: Older Adults and Mental Health 1. Important life tasks remain for individuals as they age. Older individuals continue to learn and contribute to the society, in spite of physiologic changes due. to aging and increasing health problems. 1 -. Continued intellectual, social, and physical activity throughout the life cycle. are important for the maintenance of mental health in late life. !. Stressful life events, such as declining health and/or the loss of mates, family members, or friends often increase with age. However, persistent bereavement or serious depression is not "normal" and should be treated. 4. Normal aging is not characterized by mental or cognitive disorders. Mental or substance use disorders that present alone or co-occur should be recognized and treated as illnesses. 5. Disability due to mental illness in individuals over 65 years old will become a major public health problem in the near future because of demographic changes. In particular, dementia, depression, and schizophrenia, among other conditions, will all Present special problems in this age group: a. Dementia produces significant dependency and is a leading contributor to the need for costly long-term care in the last years of life; b. Depression contributes to the high rates of suicide among males in this population; and c. Schizophrenia continues to be disabling in spite of recovery of function by some individuals in mid to late life. 6. There are effective interventions for most mental disorders experienced by older persons (for 7. 8. 9. Introduction and Themes example, depression and anxiety), and many mental health problems, such as bereavement. Older individuals can benefit from the advances in psychotherapy, medication, and other treatment interventions for mental disorders enjoyed by younger adults, when these interventions are modified for age and health status. Treating older adults with mental disorders accrues other benefits to overall health by improving the interest and ability of individuals to care for themselves and follow their primary care provider's directions anaadvice, particularly about taking medications. Primary care practitioners are a critical link in identifying and addressing mental disorders in older adults. Opportunities are missed to improve mental health and general medical outcomes when mental illness is underrecognized and undertreated in primary care settings. 10. Barriers to access exist in the organization and financing of services for aging citizens. There are specific problems with Medicare, Medicaid, nursing homes, and managed care. Chapter 6: Organization and Financing of Mental Health Services In the United States in the late 20th century, research- based capabilities to identify, treat, and, in some instances, prevent mental disorders is outpacing the capacities of the service system the Nation has in place to deliver mental health care to all who would benefit from it. Approximately 10 percent of children and adults receive mental health services from mental health specialists or general medical providers in a given year. Approximately one in six adults, and one in five children, obtain mental health services either from health care providers, the clergy, social service agencies, or schools in a given year. Chapter 6 discusses the organization and financing of mental health services. The chapter provides an overview of the current system of mental health services, describing where people get care and how they use services. The chapter then presents information on the costs of care and trends in spending. 19 Mental Health: A Report of the Surgeon General Only within recent decades, in the face of concerns about discriminatory policies in mental health financing, have the dynamics of insurance financing become a significant issue in the mental health field. In particular, policies that have emphasized cost containment have ushered in managed care. Intensive research currently is addressing both positive and adverse effects of managed care on access and quality, generating information that will guard against untoward consequences of aggressive cost-containment policies. Inequities in insurance coverage for mental health and general medical care-the product of decades of stigma and discrimination-have prompted efforts to correct them through legislation designed to produce financing changes and create parity. Parity calls for equality between mental health and other health coverage. 1. Epidemiologic surveys indicate that one in five Americans has a mental disorder in any one year. 2. Fifteen percent of the adult population use some form of mental health service during the year. Eight percent have a mental disorder; 7 percent have a mental health problem. 3. Twenty-one percent of children ages 9 to 17 receive mental health services in a year. 4. The U.S. mental health service system is complex and connects many sectors (public-private, specialty-general health, health-social welfare, housing, criminal justice, and education). As a result, care may become organizationally fragmented, creating barriers to access. The system is also financed from many funding streams, adding to the complexity, given sometimes competing incentives between funding sources. 5. In 1996, the direct treatment of mental disorders, substance abuse, and Alzheimer's disease cost the Nation $99 billion; direct costs for mental disorders alone totaled $69 billion. In 1990, indirect costs for mental disorders alone totaled $79 billion. 6. Historically, financial barriers to mental health services have been attributable to a variety of economic forces and concerns (e.g., market failure, adverse selection, moral hazard, and public provision). This has accounted for differential resource allocation rules for financing mental health services. a. "Parity" legislation has been a partial solution to this set of problems. b. Implementing parity has resulted in negligible cost increases where the care has been managed. 7. In recent years, managed care has begun to introduce dramatic changes into the organization and financing of health and mental health services. 8. Trends indicate that in some segments of the private sector per capita mental health expenditures have declined much faster than they have for other conditions. 9. There is little direct evidence of problems with quality in well-implemented managed care programs. The risk for more impaired populations and children remains a serious concern. 10. An array of quality monitoring and quality improvement mechanisms has been developed, although incentives for their full implementation has yet to emerge. In addition, competition on the basis of quality is only beginning in the managed care industry. 11. There is increasing concern about consumer satisfaction and consumers' rights. A Consumers Bill of Rights has been developed and implemented in Federal Employee Health Benefit Plans, with broader legislation currently pending in the Congress. Chapter 7: Confidentiality of Mental Health Information: Ethical, legal, and Policy Issues In an era in which the confidentiality of all health care information, its accessibility, and its uses are of concern to all Americans, privacy issues are particularly keenly felt in the mental health field. An assurance of confidentiality is understandably critical in individual decisions to seek mental health treatment. Although an extensive legal framework governs confidentiality of consumer-provider interactions, potential problems exist and loom ever larger. 1. people's willingness to seek help is contingent on their confidence that personal revelations of mental distress will not be disclosed without their consent. 2. The U.S. Supreme Court recently has upheld the right to the privacy of these records and the therapist-client relationship. 3. Although confidentiality issues are common to health care in general, there are special concerns for mental health care and mental health care records because of the extremely personal nature of the material shared in treatment. 4. State and Federal laws protect the confidentiality of health care information but are often incomplete because of numerous exceptions which often vary from state to state. Several states have imple- mented or proposed models for protecting privacy that may serve as a guide to others. 5. States, consumers, and family advocates take differing positions on disclosure of mental health information without consent to family caregivers. In states that allow such disclosure, information provided is usually limited to diagnosis, prognosis, and information regarding treatment, specifically medication. 0. When conducting mental health research, it is in the interest of both the researcher and the individual participant to address informed consent and to obtain certificates of confidentiality before proceeding. Federal regulations require informed consent for research being conducted with Federal funds. 7. New approaches to managing care and information technology threaten to further erode the confidentiality and trust deemed so essential between the direct provider of mental health services and the individual receiving those services. It is important to monitor advances so that confidentiality of records is enhanced, instead of impinged upon, by technology. 8. Until the stigma associated with mental illnesses is addressed, confidentiality of mental health information will continue to be a critical point of concern for payers, providers, and consumers. Introduction and Themes Chapter 8: A Vision for the Future- Actions for Mental Health in the New Millennium The extensive literature that the Surgeon General's report reviews and summarizes leads to the conclusion that a range of treatments of documented efficacy exists for most mental disorders. Moreover, a person may choose a particular approach to suit his or her needs and preferences. Based on this finding, the report's principal recommendation to the American people is to seek help if you have a mental health problem or think you have symptoms of a mental disorder. As noted earlier, stigma interferes with the willingness of many people--even those who have a serious mental illness-to seek help. And, as documented in this report, those who do seek help will all too frequently learn that there are substantial gaps in the availability of state-of-the-art mental health services and barriers to their accessibility. Accordingly, the final chapter of the report goes on to explore opportunities to overcome barriers to implementing the recommendation and to have seeking help lead to effective treatment. The final chapter identifies the following courses of action. 1. Continue to Build the Science Base: Today, integrative neuroscience and molecular genetics present some of the most exciting basic research opportunities in medical science. A plethora of new pharmacologic agents and psychotherapies for mental disorders afford new treatment opportunities but also challenge the scientific community to develop new approaches to clinical and health services interventions research. Because the vitality and feasibility of clinical research hinges on the willing participation of clinical research volunteers, it is important for society to ensure that concerns about protections for vulnerable research subjects are addressed. Responding to the calls of managed mental and behavioral health care systems for evidence-based interventions will have a much needed and discernible impact on practice. Special effort is required to address pronounced gaps in the mental 31 Mental Health: A Report of the Surgeon General health knowledge base. Key among these are the urgent need for evidence which supports strategies for mental health promotion and illness prevention. Additionally, research that explores approaches for reducing risk factors and strengthening protective factors for the prevention of mental illness should be encouraged. As noted throughout the report, high-quality research and the effective services it promotes are a potent weapon against stigma. 2. Overcome Stigma: Powerful and pervasive, stigma prevents people from acknowledging their own mental health problems, much less disclosing them to others. For our Nation to reduce the burden of mental illness, to improve access to care, and to achieve urgently needed knowledge about the brain, mind, and behavior, stigma must no longer be tolerated. Research on brain and behavior that continues to generate ever more effective treatments for mental illnesses is a potent antidote to stigma. The issuance of this Surgeon General's Report on Mental Health seeks to help reduce stigma by dispelling myths about mental illness, by providing accurate knowledge to ensure more informed consumers, and by encouraging help seeking by individuals experiencing mental health problems. 3. ImprovePublicAwarenessofEffective Treatment: Americans are often unaware of the choices they have for effective mental health treatments. In fact, there exists a constellation of several treatments of documented efficacy for most mental disorders. Treatments fall mainly under several broad catego- ries-counseling, psychotherapy, medication ther- apy, rehabilitation-yet within each category are many more choices. All human services professionals, notjust health professionals, have an obligation to be better informed about mental health treatmentresources in theircommunities and should encourage individuals to seek help from any source in which they have confidence. 4. Ensure the Supply of Mental Health Services and Providers: The fundamentalcomponents ofeffective service delivery, which include integrated community-based services, continuity of providers and treatments, family support services (including psychoeducation),andculturallysensitiveservices, are broadly agreed upon, yet certain of these and other mental health services are inconsistently short supply, both regionally and, in some instances, nationally. Because the service systemasawhole, as opposed to treatment services considered in isolation, dictates the outcome of recovery-oriented mental health care, it is imperative to expand the supply of effective, evidence-based services throughout the Nation. Key personnel shortages include mental healt'h, professionals serving children/adolescents and older people with serious mental disorders and specialists with expertise in cognitive-behavioral therapy and interpersonal therapy, two forms of psychotherapy that research has shown to be effective for several severe mental disorders. For adults and children with less severe conditions, primary health care, the schools, and otherhumanservicesmustbepreparedtoassessand, at times, to treat individuals who come seeking help. 5. Ensure Delivery of State-of-the-Art Treatments: A wide variety of effective, community-based services, carefully refined through years of research, exist for even the most severe mental illnesses yet are not being translatedinto community settings. Numerous explanationsforthegapbetweenwhatisknownfrom research and what is practiced beg for innovative strategies to bridge it. 6. Tailor Treatment to Age, Gender, Race, and Culture: Mental illness, no less than mental health, is influencedby age, gender,race, and culture as well as additional facets of diversity that can be found within all of these population groups-for example, physical disability or a person's sexual orientation choices. To be effective, the diagnosis and treatment of mental illness must be tailored to all characteristics that shape a person's image and identity. The consequences of not understanding these influences can be profoundly deleterious. "Culturally competent" services incorporate understanding of racial and ethnic groups, their histories,traditions, beliefs,andvaluesystems. With appropriate training and a fundamental respect for 33 clients, any mental health professional can provide culturallycompetentservicesthatreflectsensitivity toindividualdifferencesand,atthesametime,assign validity to an individual's group identity. Nonetheless, the preference of many members of ethnic and racial minority groups to be treated by lnental health professionals of similar background underscores the need to redress the current insufficient supply of mental health professionals \++o are members of racial and ethnic minority k'roups. 7. La&tate Entry Into Treatment: Public and private agencies have an obligation to facilitate entry into Imental health care and treatment through' the multiple "portals of entry" that exist: primary health care, schools, and the child welfare system. To enhance adherence to treatment, agencies should offer services that are responsive to the needs and preferencesofserviceusersandtheirfamilies.Atthe same time, some agencies receive inappropriate referrals. For example, an alarming number of children and adults with mental illness are in the criminaljusticesysteminappropriately.Importantly, assuringthesmallnumberofindividualswithsevere mental disorders who pose a threat of danger to themselves or others ready access to adequate and appropriate services promises to reduce significantly the rreed for coercion in the form of involuntary commitment to a hospital andfor certain outpatient treatment requirements that have been legislated in most states and territories. Coercion should not be a substitute for effective care that is sought voluntarily; consensus on this point testifies to the need for research designed to enhance adherence to treatment. 8. Reduce Financial Barriers to Treatment: Concerns about the cost of care-concerns made worse by the disparity in insurance coverage for mental disorders in contrast to other illnesses-are among the foremost reasons why people do not seek needed mental health care. While both access to and use of mental health services increase when benefits for those services are enhanced, preliminary data show that the effectiveness-and, thus, the value-of Introduction and Themes mental health care also has increased in recent years, while expenditures for services, under managed care. have fallen. Equality between mental health coverage and other health coverage-a concept known as parity-is an affordable and effective objective. Scope of Coverage of the Report This report is comprehensive but not exhaustive in its coverage of mental healthandmental illness. It considers mental health facets of some conditions which are not always associated with thementaldisorders and does not consider all conditions which can be found in classifications of mental disorders such as DSM-IV. The report includes, for example, a discussion of autism in Chapter 3 and provides an extensive section on Alzheimer's disease in Chapter 5. Although DSM-IV lists specific mental disorder criteria for both of these conditions, they often are viewed as being outside the scope of the mental health field. In both cases, mental health professionals are involved in the diagnosis and treatment of these conditions, often characterized by cognitive and behavioral impairments. The developmentaldisabilitiesandmentalretardationarenot discussed except in passing in this report. These conditions were considered to be beyond its scope with a care system all their own and very special needs. The same is generally true for the addictive disorders, such as alcohol andotherdruguse disorders. The latter, however, co-occur with such frequency with the other mental disorders, which are the focus of this report, that the co- occurrenceisdiscussedthroughout.Thereportcoversthe epidemiology of addictive disorders and their co- occurrence with other mental disorders as well as the treatment of co-occurring conditions. Brief sections on substance abuse in adolescence and late life also are included in the report. Preparation of the Report In September 1997, the Office of the Surgeon General, with the approval of the Secretary of the Department of Health and Human Services, authorized the Substance Abuse and Mental Health Services Administration (SAMHSA) to serve as lead operating division for 33 Mental Health: A Report of the Surgeon General preparing the first Surgeon General's Report on Mental Health. 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Contents The Neuroscience of Mental Health ................................................. 32 Complexity of the Brain I: Structural ............................................. 32 Complexity of the Brain II: Neurochemical ........................................ 36 Complexity of the Brain III: Plasticity ............................................ 38 ImagingtheBrain ............................................................ 38 Overview of Mental IIlness ........................................................ 39 Manifestations of Mental Illness ................................................ 40 Anxiety .................................................................. 40 Psychosis ............................................................... 41 DisturbancesofMood ..................................................... 42 DisturbancesofCognition .................................................. 43 Other Symptoms.. ........................................................ 43 DiagnosisofMentalIllness .................................................... 43 Epidemiology of Mental Illness ................................................. 45 Adults .................................................................. 46 Children and Adolescents ................................................... 46 OlderAdults.. ........................................................... 48 Future Directions for Epidemiology .............................................. 48 Costs of Mental Illness ........................................................ 49 OverviewofEtiology ............................................................ 49 Biopsychosocial Model of Disease ............................................... 50 Understanding Correlation, Causation, and Consequences ............................ 5 1 Biological Influences on Mental Health and Mental Illness ........................... 52 The Genetics of Behavior and Mental Illness ................................... 52 InfectiousInfluences ...................................................... 54 PANDAS ............................................................ 55 Contents, continued Psychosocial Influences on Mental Health and Mental Jllness .......................... 55 PsychodynamicTheories ................................................... 55 Behaviorism and Social Learning Theory ...................................... 56 The Integrative Science of Mental Illness and Health ................................ 57 Overview of Development, Temperament, and Risk Factors ...................... _ ....... 57 PhysicalDevelopment ........................................................ 58 Theories of Psychological Development ........................................... 59 Piaget: Cognitive Developmental Theory ...................................... 59 Erik Erikson: Psychoanalytic Developmental Theory ............................. 59 John Bowlby: Attachment Theory of Development ............................... 60 Nature and Nurture: The-Ultimate Synthesis ....................................... 60 OverviewofPrevention.. ......................................................... 62 Definitions of Prevention ...................................................... 62 Risk Factors and Protective Factors .............................................. 63 Overview of Treatment ........................................................... 64 Introduction to Range of Treatments .............................................. 64 Psychotherapy ............................................................... 65 PsychodynamicTherapy.. .................................................. 66 BehaviorTherapy ......................................................... 66 Humanistic Therapy ....................................................... 67 PharmacologicalTherapies ..................................................... 68 MechanismsofAction ..................................................... 68 Complementary and Alternative Treatment ..................................... 70 IssuesinTreatment ........................................................... 70 PlaceboResponse ......................................................... 70 BenefitsandRisks ........................................................ 71 Gap Between Efficacy and Effectiveness ....................................... 72 Barriers to Seeking Help .................................................... 72 Overview of Mental Health Services ................................................. 73 Overall Patterns of Use ........................................................ 75 History of Mental Health Services ............................................... 75 CONTENTS, CONTNJED Overview of Cultural Diversity and Mental Health Services .............................. 80 Introduction to Cultural Diversity and Demographics ................................ 81 CopingStyles ............................................................ 82 Family and Community as Resources ............................................. 83 Epidemiology and Utilization of Services ....................................... 84 African Americans ........................................................ 84 Asian Americans/Pacific Islanders ............................................. 85 Hispanic Americans ........................................................ 86 Native Americans ......................................................... 86 Barriers to the Receipt of Treatment ............................................. 86 Help-Seeking Behavior .................................................... 86 Mistrust ................................................................. 86 Stigma .................................................................. 87 Cost .................................................................... 87 ClinicianBias.. .......................................................... 88 Improving Treatment for Minority Groups .......................................... 88 Ethnopsychopharmacology ................................................. 88 Minority-Oriented Services ................................................. 89 Cultural Competence ....................................................... 90 Rural Mental Health Services ................................................... 92 ( Jvcrview of Consumer and Family Movements ........................................ 92 Origins and Goals of Consumer Groups ........................................... 93 Self-HelpGroups ......................................................... 94 Accomplishments of Consumer Organizations ..................................... 95 Family Advocacy ............................................................ 96 (brview of Recovery ............................................................ 97 Introduction and Definitions .................................................... 97 Impact of the Recovery Concept ................................................ 98 conclusions.. ................................................................. 100 Mental Health and Mental Illness Across the Lifespan .............................. 102 Refmnces . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 104 CHAPTER 2 THE FUNDAMENTALS OF MENTAL HEALTH AND MENTAL ILLNESS A vast body of research on mental health and, to an even greater extent, on mental illness constitutes me foundation of this Surgeon General's report. TO understand and better appreciate the content of the chapters that follow, readers outside the mental health field may desire some background information. Thus, this chapter furnishes a "primer" on topics that the report addresses. The chapter begins with an overview of research under way today that is focused on the neuroscience of rncntal health. Modem integrative neuroscience offers ;I mcans of linking research on broad "systems level" ;tspects of brain function with the remarkably detailed tools and findings of molecular biology. The report begins with a discussion of the brain because it is central to what makes us human and provides an understanding of mental health and mental illness. All of human behavior is mediated by the brain. Consider, for example, a memory that most people have from childhood-that of learning to ride a bicycle with the help of a parent or friend. The fear of falling, the anxiety of lack of control, the reassurances of a loved one. and the final liberating experience of mastery and a newly extended universe create an unforgettable combination. For some, the memories are not good ones: falling and being chased by dogs have left marks of anxiety and fear that may last a lifetime. Science is revealing how the skill learning, emotional overtones, and memories of such experiences are put together physically in the brain. The brain and mind are two sides of the same coin. Mind is not possible without the remarkable physical complexity that is built into the brain, but, in addition, the physical complexity of the brain is useless without the sculpting that environment, experience, and thought itself provides. Thus the brain is now known to be physically shaped by contributions from our genes and our experience, working together. This strengthens the view that mental disorders are both caused and can be treated by biological and experiential processes, working together. This understanding has emerged from the breathtaking progress in modem neuroscience that has begun to integrate knowledge from biological and behavioral sciences. An overview of mental illness follows the section on modem integrative brain science. The section highlights topics including symptoms, diagnosis, epidemiology (i.e., research having to do with the distribution and determinants of mental disorders in population groups, including various racial and ethnic minority groups), and cost, all of which are discussed in greater and more pointed detail in the chapters that follow. Etiology is the study of the origins and causes of disease, and that section reviews research that is seeking to define, with ever greater precision, the causes of mental disorders. As will be seen, etiology research examines fundamental biological, behavioral, and so&cultural processes, as well as a necessarily broad array of life events. The section on development of temperament reveals how mental health science has attempted over much of the past century to understand how biological, psychological, and sociocultural factors meld in health as well as in illness. The chapter then reviews research approaches to the prevention and treatment of mental disorders and provides an overview of mental health services and their delivery. Final sections cover the growing influence on the mental 31 Mental Health: A Report of the Surgeon General health field of the need for attention to cultural diversity, the importance of the consumer movement, and new optimism about recovery from mental illness-that is, the possibility of recovering one's life. The Neuroscience of Mental Health' Complexity of the Brain I: Structural As befits the organ of the mind, the human brain is the most complex structure ever investigated by our science. The brain contains approximately 100 billion nerve cells, or neurons, and many more supporting cells, or glia. In and of themselves, the number of cells Figure 2-1. Structural variety of neurons F'URKINJE CELL in this 3-pound organ reveal little of its complexity. Yet most organs in the body are composed of only a handful of cell types; the brain, in contrast, has literally thousands of different kinds of neurons, each distinct in terms of its chemistry, shape, and connections (Figure 2-l depicts the structural variety of neurons). To illustrate, one careful, recent investigation of a kind of interneuron that is a small local circuit neuron in the retina, called the amacrine cell, found no less than 23 identifiable types. But this is only the beginning of the brain's complexity. Source: Fischbach, 1992, p. 53. (Permission granted: Patricia J. Wynne.) ' Special thanks to Steven E. Hyman, M.D., Director, National Institute of Mental Health, and Gerald D. Fischbach, M.D., Director, National Institute of Neurological Diseases and Stroke. for their contributions to this section. 32 The Fundamentals of Mental Health and Mental Illness The workings of the brain depend on the ability of nclr\`e cells to communicate with each other. communication occurs at small, specialized structures C.lled synapses. The synapse typically has two parts. one is a specialized presynaptic structure on a terminal portion of the sending neuron that contains packets of rignalling chemicals, or neurotransmitters. The second is a postsynaptic structure on the dendrites of the fscriving neuron that has receptors for the nrnrotransmitter molecules. The typical neuron has a cell body, which contains [he genetic material, and much of the cell's energy- producing machinery. Emanating from the cell body are dendrites. branches that are the most important receptive surface of the cell for communication. The dendrites of neurons can assume a great many shapes and sizes, all relevant to the way in which incoming messages are processed. The. output of neurons is curried along what is usually a single branch called the axon. It is down this part of the neuron that signals are trunsmitted out to the next neuron. At its end, the axon may branch into many terminals. (Figure 2-2.) The usual form of communication involves clcctrical signals that travel within neurons, giving rise IO chemical signals that diffuse, or cross, synapses, \vhich in turn give rise to new electrical signals in the postsynaptic neuron. Each neuron, on average, makes more than 1,000 synaptic connections with other neurons. One type of cell-a Purkinje cell-may make hctween 100,000 and 200,000 connections with other ncnrons. In aggregate, there may be between 100 trillion and a quadrillion synapses in the brain. These synapses are far from random. Within each region of the brain, there is an exquisite architecture consisting of layers and other anatomic substructures in which WaPtic connections are formed. Ultimately, the Pattern of synaptic connections gives rise to what are called circuits in the brain. At the integrative level, large- and small-scale circuits are the substrates of behavior and of mental life. One of the most awe- insPifing mysteries of brain science is how neuronal activity within circuits gives rise to behavior and, even, consciousness. The complexity of the brain is such that a single neuron may be part of more than one circuit. The organization of circuits in the brain reveals that the brain is a massively parallel, distributed information processor. For example, the circuits involved in vision receive information from the retina. After initial processing, these circuits analyze information into different streams, so that there is one stream of information describing what the visual object is, and another stream is concerned with where the object is in space. The information stream having to do with the identity of the object is actually broken down into several more refined parallel streams. One, for example, analyzes shape while another analyzes color. Ultimately, the visual world is resynthesized with information about the tactile world, and the auditory world, with information from memory, and with emotional coloration. The massively parallel design is a great pattern recoguizer and very tolerant of failure in individual elements. This is why a brain of neurons is still a better and longer-lasting information processor than a computer. The specific connectivity of circuits is, to some degree, stereotyped, or set in expected patterns within the brain, leading to the notion that certain places in the brain are specialized for certain functions (Figure 2-3). Thus, the cerebral cortex, the mantle of neurons with its enormous surface area increased by outpouchings, called gyri, and indentations, called sulci, can be functionally subdivided. The back portion of the cerebral cortex (i.e., the occipital lobe), for example, is involved in the initial stages of visual processing. Just behind the central sulcus is the part of the cerebral cortex involved in the processing of tactile information (i.e., parietal lobe). Just in front of the central sulcus is a part of the cerebral cortex involved in motor behavior (frontal lobe). In the front of the brain is a region called the prefrontal cortex, which is involved with some of the highest integrated functions of the human being, including the ability to plan and to integrate cognitive and emotional streams of information. Beneath the cortex are enormous numbers of axons sheathed in the insulating substance, myelin. This sub- Mental Health: A Report of the Surgeon General Figure 2-2. How neurons communicate Source: Fischbach, 1992, p. 52. (Permission granted: Tomo Narashima.) 34 The Fundamentals of Mental Health and Mental Illness Figure 2-3. The brain: Organ of the mind PlTULT..Y blAND PWIETAL SOUrCe: Fischbach, 1992, p. 51. (Permission granted: Carol Donner.) cortical "white matter," so named because of its the brain processes information. The white matter is appearance on freshly cut brain sections, surrounds akin to wiring that conveys information from one deep aggregations of neurons, or "gray matter," which, region to another. Gray matter regions include the basal Iike the cortex, appears gray because of the presence of ganglia, the part of the brain that is involved in the neuronal cell bodies. It is within this gray matter that initiation of motion and thus profoundly affected in 35 Mental Health: A Report of the Surgeon General Parkinson's disease, but that is also involved in the integration of motivational states and, thus, a substrate of addictive disorders. Other important gray matter structures in the brain include the amygdala and the hippocampus. The amygdala is involved in the assignment of emotional meaning to events and objects, and it appears to play a special role in aversive, or negative, emotions such as fear. The hippocampus includes, among its many functions, responsibility for initially encoding and consolidating explicit or episodic memories of persons, places, and things. In summary, the organization of the brain at the cellular level involves many thousands of distinct kinds of neurons. At a higher integrative level, these neurons form circuits for information processing determined by their patterns of synaptic connections. The organization of these parallel distributed circuits results in the specialization of different geographic regions of the brain for different functions. It is important to state at this point, however, that, especially in younger individuals, damage to a particular brain region may yield adaptations that permit circuits spared the damage and, therefore, other regions of the brain, to pick up some of the functions that would otherwise have been lost. Complexity of the Brain II: Neurochemical Superimposed on this breathtaking structural complexity is the chemical complexity of the brain. As described above, electrical signals within neurons are converted at synapses into chemical signals which then elicit electrical signals on the other side of the synapse. These chemical signals are molecules called neurotransmitters. There are two major kinds of molecules that serve the function of neurotransmitters: small molecules, some quite well known, with names such as dopamine, serotonin, or norepinephrine, and larger molecules, which are essentially protein chains, called peptides. These include the endogenous opiates, Substance P, and corticotropin releasing factor (CRF), among others. All told, there appear to be more than 100 different neurotransrnitters in the brain (Table 2-1 contains a selected list). A neurotransmitter can elicit a biological effect in the postsynaptic neuron by binding to a protein called a neurotransmitter receptor. Its job is to pass the information contained in the neurotransmitter message from the synapse to the inside of the receiving cell. It appears that almost every known neurotransmitter has Table 2-1. Selected neurotransmitters important In psychopharmacology Excitatory amino acid Glutamate Inhibitory amino acids Gamma aminobutyric acid Glycine Monoamines and related neurotransmitters Norepinephrine Dopamine Serotonin Histamine Acetylcholine (quarternary amine) Purine Adenosine Neuropeptides Opioids Enkephalins Beta-endorphin Dynorphin Tachykinin Substance P Hypothalamic-re/easing factors Corticotropin-releasing hormone more than one different kind of receptor that can confer rather different signals on the receiving neuron. Dopamine has 5 known neurotransmitter receptors; serotonin has at least 14. Although there are many kinds of receptors with many different signaling functions, we can divide most neurotransmitter receptors into two general classes. One class of neurotransmitter receptor is called a ligand-gated channel, where "ligand" simply means a 36 The Fundamentals of Mental Health and Mental Illness ,,,olecule (i.e.. a neurotransmitter) that binds to a receptor. When neurotransmitters interact with this kind of receptor, a pore within the receptor molecule itself is opened and positive or negative charges enter [he cell. The entry of positive charge may activate ;,dditional ion channels that allow more positive charge to enter. At a certain threshold, this causes a cell to fire an action potential- an electrical event that leads ultimately to the release of neurotransmitter. By definition. therefore, receptors that admit positive charge are excitatory neurotransmitter receptors. The classic excitatory neurotransmitter receptors in the brain utilize the excitatory amino acids glutamate and, to a lesser degree, aspartate as neurotransmitters. Conversely, inhibitory neurotransmitters act by permitting negative charges into the cell, taking the cell thrther away from firing. The classic inhibitory ncurotransmitters in the brain are the amino acids ~;unma ammo butyric acid, or GABA, and, to a lesser degree. glycine. Most of the other neurotransmitters in the brain, huch as dopamine, serotonin, and norepinephrine, and ;III of the many neuropeptides constitute the second major class. These are neither precisely excitatory nor inhibitory but rather act to produce complex biochemical changes in the receiving cell. Their receptors do not contain intrinsic ion pores but rather intcmct with signaling proteins, called "G proteins" found inside the cell membrane. These receptors thus ;ire called G protein-linked receptors. The details are less important than understanding the general scheme. Stimulation of G protein-linked receptors alters the way in which receiving neurons can process subsequent r*ignals from glutamate or GAB A. To use a metaphor of a musical instrument, if glutamate, the excitatory neurotransmitter, is puffing wind into a flute or clarinet. it is the modulatory neurotransmitters such as doPamine or serotonin that might be seen as playing the keys and. thus, altering the melody via G protein-linked receptors. The architecture of these systems drives home this Point. The precise brain circuits that carry specific information about the world and that are involved in precise point-to-point communication within the brain use excitatory or inhibitory neurotransmission. Examples of such circuits, which are massively parallel, can be found in the visual and auditory cortex. Overlying this pattern of precise, rapid (timing in the range of milliseconds) neurotransmission are the modulatory systems in the brain that use norepinephrine, serotonin, and dopamine. In each case, the neurotransmitter in question is made by a very small number of nerve cells clustered in a limited number of areas in the brain, Of the hundred billion neurons in the brain, only about 500,000, for example, make dopamine-that is, for every 200,000 cells in the brain, only one makes dopamine. Even fewer make norepinephrine. The cell bodies of the dopamine neurons are clustered in a few brain regions, most importantly, regions deep in the brain, in the midbrain, called the substuntia n&u, and the ventral tegmentul urea. Norepinephrine neurons are made in the nucleus locus coeruleus even farther down in the brain stem in a structure called the pow. Serotonin is made by a somewhat larger number of nuclei but, still, not by many cells. Nuclei called the ruphe nuclei spread along the brain stem. While each of these neurotransmitters is made by a small number of neurons with clustered cell bodies, each sends its axons branching throughout the brain, so that in each case a very small number of neurons, which largely appear to fire in unison when excited, influence almost the entire brain. This is not the picture of systems that are communicating precise bits of information about the world but rather are intrinsic modulatory systems that act via other G protein-linked receptors to alter the overall responsiveness of the brain. These neurotransmitters are responsible for brain states such as degree of arousal, ability to pay attention, and for putting emotional color or significance on top of cold cognitive information provided by precise glutaminergic circuits. It is no wonder that these modulatory neurotransmitters and their receptors are critical targets of medications used to treat mental disorders-for example, the antidepressant and antipsychotic drugs-and also are the targets of drugs of abuse. 37 Mental Health: A Report of the Surgeon General Complexity of the Brain III: Plasticity The preceding paragraphs have illustrated the chemical and anatomic structure of the brain and, in so doing, provided some picture of its complexity as well as some picture of its function. The crowning complexity of the brain, however, is that it is not static. The brain is always changing. People learn so much and have so many distinct types of memory: conscious, episodic memory of the sort that is encoded initially in the hippocampus; memory of motor programs or procedures that are encoded in the striatum; emotional memories that can initiate physiologic and behaviorally adaptive repertoires encoded, for example, in the amygdala; and many other kinds. Every time a person learns something new, whether it is conscious or unconscious, that experience alters the structure of the brain. Thus, neurotransmission in itself not only contains current information but alters subsequent neurotransmission if it occurs with the right intensity and the right pattern. Experience that is salient enough to cause memory creates new synaptic connections, prunes away old ones, and strengthens or weakens existing ones. Similarly, experiences as diverse as stress, substance abuse, or disease can kill neurons, and current data suggest that new neurons .continue to develop even in adult brains, where they help to incorporate new memories. The end result is that information is now routed over an altered circuit. Many of these changes are long-lived, even permanent. It is in this way that a person can look back 10 or 20 or 50 years and remember family, a home or school room, or friends. The general theme is that to really understand the kind of memory-indeed, any brain function-one must think at least at two levels: one, the level of molecular and cellular alterations that are responsible for remodeling synapses, and, two, the level of information content and behavior which circuits and synapses serve. To summarize this section, scientists are truly beginning to learn about the structure and function of the brain. Its awe-inspiring complexity is fully consistent with the fact that it supports all behavior and mental life. Implied in the foregoing, is the fact that brains are built not only by genes-and again, it is the lion's share of the 80,000 or so human genes that are involved in building a structure so complex as the brain. Genes are not by themselves the whole story. Brains are built and changed through life through the interaction of genes with environment, including experience. It is true that a set of genes might create repetitive multiples of one type of unit, yet the brain appears far more complex than that. It stands to reason that if 50,000 or 60,000 genes are involved in building a brain that may have 100 trillion or a quadrillion synapses, additional information is needed, and that information comes from the environment. It is this fundamental realization that is beginning to permit an understanding of how treatment of mental disorders works-whether in the form of a somatic intervention such as a medication, or a psychological "talk" therapy-by actually changing the brain. Imaging the Brain There are many exciting developments in brain science. Of great relevance to the study of mental function and mental illness is the ability to image the activity of the living human brain with technologies developed in recent decades, such as positron emission tomography scanning or functional magnetic resonance imaging. Such approaches can exploit surrogates of neuronal firing such as blood flow and blood oxygenation to provide maps of activity. As science learns more about brain circuitry and learns more from cognitive and affective neuroscience about how to activate and examine the function of particular brain circuits, differences between health and illness in the function of particular circuits certainly will become evident. We will be able to see the action of psychotropic drugs and, perhaps most exciting, we will be able to see the impact of that special kind of learning called psychotherapy, which works after all because it works on the brain. Different brain chemicals, brain receptors, and brain structures will come up in the discussion of particular illnesses throughout this document. This section is meant to provide a panoramic, not a detailed, introduction and also to provide certain overarching lessons. When something is referred to as biological or brain-based, that is not shorthand for saying it is 38 ,,enetic and, thus, predetermined; similarly, references 2 to ..psychological" or even "social" phenomena do not Csc]ude biological processes. The brain is the great integrator, bringing together genes and environment. The study of the brain requires reducing problems initially to bite-sized bits that will allow investigators to learn something, but ultimately, the agenda of ,,euroscience is not reductionist; the goal is to cnderstand behavior, not to put blinders on and try to csplain it away. As the foregoing discussion illustrates, rhe brain also is complex. Thus, having a disease that affccts one or even many critical circuits does not overthrow, except in extreme cases, such as advanced .\lzheimer's disease, all aspects of a person. Typically, people retain their personality and, in most cases, their ;lbility to take responsibility for themselves. In retrospect, early biological models of the mind \ccm impoverished and deterministic-for example, ~nodels that held that "levels" of a neurotransmitter huch as serotonin in the brain were the principal intluence on whether one was depressed or aggressive. Neuroscience is far beyond that now, working to integrate information coming "bottom-up" from genes :rnd molecules and cells, with information flowing "top-down" from interactions with the environment and experience to the internal workings of the mind and its ncuronal circuits. Ultimately, however, the goal is not only human self-understanding. In knowing eventually precisely what goes wrong in what circuits and what hynapses and with what chemical signals, the hope is to develop treatments with greater effectiveness and with l&ver side effects. Indeed, as the following chapters indicate, the hope is for cures and ultimately for prevention. There is every reason to hope that as our science progresses, we will achieve those goals. Ckmdew of Mental Illness hlental illness is a term rooted in history that refers collectively to all of the diagnosable mental disorders. Mental disorders are characterized by abnormalities in cognition, emotion or mood, or the highest integrative aspects of behavior, such as social interactions or Planning of future activities. These mental functions are all mediated by the brain. It is, in fact, a core tenet of modem science that behavior and our subjective mental lives reflect the overall workings of the brain. Thus, symptoms related to behavior or our mental lives clearly reflect variations or abnormalities in brain function. On the more difficult side of the ledger are .the terms disorder, disease, or illness. There can be no doubt that an individual with schizophrenia is seriously ill, but for other mental disorders such as depression or attention-deficit/hyperactivity disorder, the signs and symptoms exist on a continuum and there is no bright line separating health from illness, distress from disease. Moreover, the mapifestations of mental disorders vary with age, gender, race, and culture. The thresholds of mental illness or disorder have, indeed, been set by convention, but the fact is that this gray zone is no different from any other area of medicine. Ten years ago a serum cholesterol of 200 was considered normal. Today, this same number alarms some physicians and may lead to treatment. Perhaps every adult in the United States has some atherosclerosis, but at what point does this move along a continuum from normal into the realm of illness? Ultimately, the dividing line has to do with severity of symptoms, duration, and functional impairment. Despite the existence of a gray zone between health and illness, science can study the mechanisms by which illness occurs. Indeed, understanding mood regulation and its abnormalities, for example, proceeds independently from any set of diagnostic clinical criteria. Family studies, molecular genetics strategies, epidemiology, and the tools of clinical investigation tailored to specific populations are being used to investigate the mechanisms of mental illness. Specific manifestations of mental illness will be covered in succeeding pages. This overview of mental illness focuses on those features of the disease process that are most common and characteristic of these disorders. The chapters that follow will present specific details about major categories of mental disorders that occur across the life span. The purpose here is to provide a framework upon which subsequent discussions of specific disorders can rest. The section leads with a descriptive overview of the cardinal manifestations, signs, and symptoms of The Fundamentals of Mental Health and Mental Illness 39 Mental Health: A Report of the Surgeon General mental disorders. It then describes how mental disorders are diagnosed and classified and provides an overview of the epidemiology and societal burden of mental disorders. Manifestations of Mental Illness Persons suffering from any of the severe mental disorders present with a variety of symptoms that may include inappropriate anxiety, disturbances of thought and perception, dysregulation of mood, and cognitive dysfunction. Many of these symptoms may be relatively specific to a particular diagnosis or cultural influence. For example, disturbances of thought and perception (psychosis) are most commonly associated with schizophrenia. Similarly, severe disturbances in expression of affect and regulation of mood are most commonly seen in depression and bipolar disorder. However, it is not uncommon to see psychotic symptoms in patients diagnosed with mood disorders or to see mood-related symptoms in patients diagnosed with schizophrenia. Symptoms associated with mood, anxiety, thought process, or cognition may occur in any patient at some point during his or her illness. Anxiety Anxiety is one of the most readily accessible and easily understood of the major symptoms of mental disorders. Each of us encounters anxiety in many forms throughout the course of our routine activities. It may often take the concrete formof intense fear experienced in response to an immediately threatening experience such as narrowly avoiding a traffic accident. Experiences like this are typically accompanied by strong emotional responses of fear and dread as well as physical signs of anxiety such as rapid heart beat and perspiration. Some of the more common signs and symptoms of anxiety are listed in Table 2-2. Anxiety is aroused most intensely by immediate threats to one's safety, but it also occurs commonly in response to dangers that are relatively remote or abstract. Intense anxiety may also result from situations that one can only vaguely imagine or anticipate, Anxiety has evolved as a vitally important physiological response to dangerous situations that pre- Table 2-2. Common signs of acute anxiety . Feelings of fear or dread \ . Trembling, restlessness, and muscle tension . Rapid heart rate . Lightheadedness or dizziness . Perspiration . Cold hands/feet . Shortness of breath pares one to evade or confront a threat in the environment. The appropriatti regulation of anxiety is critical to the survival of virtually every higher organism in every environment. However, the mechanisms that regulate anxiety may break down in a wide variety of circumstances, leading to excessive or inappropriate expression of anxiety. Specific examples include phobias, panic attacks, and generalized anxiety. In phobias, high-level anxiety is aroused by specific situations or objects that may range from concrete entities such as snakes, to complex circumstances such as social interactions or public speaking. Panic attacks are brief and very intense episodes of anxiety that often occur without a precipitating event or stimulus. Generalized anxiety represents a more diffuse and nonspecific kind of anxiety that is most often experienced as excessive worrying, restlessness, and tension occurring with a chronic and sustained pattern. In each case, an anxiety disorder may be said to exist if the anxiety experienced is disproportionate to the circumstance, is difficult for the individual to control, or interferes with normal functioning. In addition to these common manifestations of anxiety, obsessive-compulsive disorder and post- traumatic stress disorder are generally believed to be related to the anxiety disorders. The specific clinical features of these disorders will be described more fully in the following chapters; however, their relationship to anxiety warrants mention in the present context. In the case of obsessive-compulsive disorder, individuals experience a high level of anxiety that drives their obsessional thinking or compulsive behaviors. When such an individual fails to carry out a repetitive 40 The Fundamentals of Mental Health and Mental Illness khdvior such as hand washing or checking, there is an ,,ps+nce of severe anxiety. Thus while the outward ,,,~nifestations of obsessive-compulsive disorder may rCem fO be related to other anxiety disorders, there .1ppet;lrs to be a strong component of abnormal rC,,uiation of anxiety underlying this disorder. Post- truumatic stress disorder is produced by an intense and ,,,.cnvhejmjngly fearful event that is often life- tureatening in nature. The characteristic symptoms that rc,ult from such a traumatic event include the persistent reesperience of the event in dreams and memories, persistent avoidance of stimuli associated with the cvcnt. and increased arousal. Psychosis l)ihturbances of perception and thought process fall into a broad category of symptoms referred to as Il`;ychosis. The threshold for. determining whether ttlmyht is impaired varies somewhat with the cultural context. Like anxiety, psychotic symptoms may occur III ;I wide variety of mental disorders. They are most characteristically associated with schizophrenia, but Ilsychotic symptoms can also occur in severe mood disorders. One of the most common groups of symptoms that rcsu I t from disordered processing and interpretation of \cnsory information are the hallucinations. Ilallucinations are said to occur when an individual cxpcriences a sensory impression that has no basis in rcillity. This impression could involve any of the ~nsory modalities. Thus hallucinations may be auditory, olfactory, gustatory, kinesthetic, tactile, or visual. For example, auditory hallucinations frequently involve the impression that one is hearing a voice. In each case, the sensory impression is falsely experienced as real. A more complex group of symptoms resulting from disordered interpretation of information consists of delusions. A delusion is a false belief that an individual holds despite evidence to the contrary. A common example is paranoia, in which a person has delusional beliefs that others are trying to harm him or her. Attempts to persuade the person that these beliefs are unfounded typically fail and may even result in the further entrenchment of the beliefs. Hallucinations and delusions are among the most commonly observed psychotic symptoms. A list of other symptoms seen in psychotic illnesses such as schizophrenia appears in Table 2-3. Symptoms of schizophrenia are divided into two broad classes: positive symptoms and negative symptoms. Positive symptoms generally involve the experience of something in consciousness that should not normally be present. For example, hallucinations and delusions represent perceptions or beliefs that should not normally be expirienced. In addition to hallucinations and delusions, patients with psychotic disorders such as schizophrenia fre- quently have marked disturbances in the logical process of their thoughts. Specifically, psychotic thought processes are characteristically loose, disorganized, illogical, or bizarre. These disturbances in thought process frequently produce observable patterns of behavior that are also disorganized and bizarre. The severe disturbances of thought content and process that comprise the positive symptoms often are the most recognizable and striking features of psychotic disorders such as schizophrenia or manic depressive illness. Table 2-3. Common manifestations of schizophrenia Positive Symptoms . Hallucinatidns . Delusions . Disorganized thoughts and behaviors . Loose or illogical thoughts . Agitation Negative Symptoms . Flat or blunted affect . Concrete thoughts . Anhedonia (inability to experience pleasure) . Poor motivation, spontaneity, and initiative However, in addition to positive symptoms, patients with schizophrenia and other psychoses 41 Mental Health: A Report of the Surgeon General have been noted to exhibit major deficits in motivation and spontaneity that are referred to as negative symptoms. While positive symptoms represent the presence of something not normally experienced, negative symptoms reflect the absence of thoughts and behaviors that would otherwise be expected. Concreteness of thought represents impairment in the ability to think abstractly. Blunting of affect refers to a general reduction in the ability to express emotion. Motivational failure and inability to initiate activities represent a major source of long-term disability in schizophrenia. Anhedonia reflects a deficit in the ability to experience pleasure and to react appropriately. to pleasurable situati,ons. Positive symptoms such as hallucinations are responsible for much of the acute distress associated with schizophrenia, but negative symptoms appear to be responsible for much of the chronic and long-term disability associated with the disorder. The psychotic symptoms represent manifestations of disturbances in the flow, processing, and interpretation of information in the central nervous system. They seem to share an underlying commonality of mechanism, insofar as they tend to respond as a group to specific pharmacological interventions. However, much remains to be learned about the brain mechanisms that lead to psychosis. Disturbances of Mood Most of us have an immediate and intuitive understanding of the notion of mood. We readily comprehend what it means to feel sad or happy. These concepts are nonetheless very difficult to formulate in a scientifically precise and quantifiable way; the challenge is greater given the cultural differences that are associated with the expression of mood. In turn, disorders that impact on the regulation of mood are relatively difficult to define and to approach in a quantitative manner. Nevertheless, dysregulation of mood and the expression of mood, or affect, represent a major category among mental disorders. Disturbances of mood characteristically manifest themselves as a sustained feeling of sadness or sustained elevation of mood. As with anxiety and psychosis, disturbances of mood may occur in a variety of patterns associated with .different mental disorders. The disorder most closely associated with persistent sadness is major depression, while that associated with sustained elevation or fluctuation of mood is bipolar disorder. The most common signs of these mood disorders are listed in Table 2-4. Along with the prevailing feelings of sadness or elation, disorders of mood are associated with a host of related symptoms that include disturbances in appetite, sleep patterns, energy level, concentration, and memory. Table 2-4. Common signs of mood disorders Symptoms Commonly Associated With Depression . Psychomotor retardation i Irritability I I* Suicidal ideation I Symptoms Commonly Associated With Mania ~I') `,p-*.v**;`r$.~i " 1 ~Yf$ersis :sx: (" Grandiosity (inappropriately high self-esteem) / Decreased sleep 42 The Fundamentals of Mental Health and Mental Illness lt is not known why diverse functions such as ,leep and appetite should be altered in disorders of nlood. However, depression and mania are typically ,ssociated with characteristic changes in these basic functions. Mood appears to represent a ,.umplex group of behaviors and responses that undergo precise and tightly controlled regulation. Higher organisms that must adapt to changing suvironments depend on optimal control of basic functions such as sleep, appetite, sex, and physical ;ictivity. This regulation must adapt to diurnal and seasonal changes in the environment. In addition, more complex behaviors such as exploration, aggression, and social interaction must also undergo a similar, perhaps closely linked, regulation. In humans, these complex behaviors and their regulation are believed to be associated with the expression of mood. A depressed mood appears to reflect a kind of global damping of these t'unctions, while a manic state may result from an excessive activation of these same functions. The mechanisms underlying the diverse changes associated with the mood disorders are largely unknown, but their appearance as clusters in specific disorders along with their collective response to specific therapeutics suggests a common mechanistic basis. Disturbances of Cognition Cognitive function refers to the general ability to organize, process, and recall information. Cognitive tasks may be subdivided into a large number of more specific functions depending on the nature of the information remembered and the circumstances of its recall. In addition, there are many functions commonly associated with cognition such as the ability to execute complex sequences of tasks. Disturbances of cognitive function may occur in a variety of disorders. Progressive deterioration of cognitive function is referred to as dementia. Dementia may be caused by a number of specific conditions including Alzheimer's disease (to be discussed in subsequent chapters). Impairment of cognitive function may also occur in other mental disorders such as depression. It is not uncommon to find profound disturbances of cognition in patients suffering from severe mood disturbances. More recently, cognitive deficits have been reported in schizophrenia and now have become a major new topic of research. Lastly, cognitive impairment .frequently occurs in a host of chemical, metabolic, and infectious diseases that exert an impact on the brain. The manifestations of cognitive impairment can vary across an extremely wide range, depending on severity. Short-term memory is one of the earliest functions to be affected and, as severity increases, retrieval of more remote memories becomes more difficult. Attention, concentration, and higher intellectual functions can be impaired as the underlying disease process progresses. Language difficulties range from mild word-finding problems to complete inability to comprehend or use language. Functional impairments associated with cognitive deficits can markedly interfere with the ability to perform activities of daily living such as dressing and bathing. Other Symptoms Anxiety, psychosis, mood disturbances, and cognitive impairments are among the most common and disabling manifestations of mental disorders. It is important, however, to appreciate that mental disorders leave no aspect of human experience untouched. It is beyond the scope of the present chapter to detail the full spectrum of presentations of mental disorders. Other common manifestations include, for example, somatic or other physical symptoms and impairment of impulse control. Many of these issues will be touched upon in subsequent chapters with reference to specific disorders. Diagnosis of Mental Illness The foregoing discussion has suggested that the manifestations of mental disorders fall into a number of distinct categories such as anxiety, psychosis, mood disturbance, and cognitive 43 Mental Health: A Report of the Surgeon General deficits. These categories are broad, heterogeneous, and somewhat overlapping. Moreover, any particular patient may manifest symptoms from more than one of these categories. This is not unexpected, given the highly complex interactions that take place among the neurobiological and behavioral substrates that produce these symptoms. Despite these confounding difficulties, a systematic approach to the classification and diagnosis of mental illness has been developed. Diagnosis is essential in all areas of health for shaping treatment and supportive care, establishing a prognosis, and preventing related disability. Diagnosis also serves as shorthand to enhance communication, research, surveillance, and reimbursement. The diagnosis of mental disorders is often believed to be more difficult than diagnosis of somatic, or general medical, disorders, since there is no definitive lesion,- laboratory test, or abnormality in brain tissue that can identify the illness. The diagnosis of mental disorders must rest with the patients' reports of the intensity and duration of symptoms, signs from their mental status examination, and clinician observation of their behavior including functional impairment. These clues are grouped together by the clinician into recognizable patterns known as syndromes. When the syndrome meets all the criteria for a diagnosis, it constitutes a mental disorder. Most mental health conditions are referred to as disorders, rather than as diseases, because diagnosis rests on clinical criteria. The term "disease" generally is reserved for conditions with known pathology (detectable physical change). The term "disorder," on the other hand, is reserved for clusters of symptoms and signs associated with distress and disability (i.e., impairment of functioning), yet whose pathology and etiology are unknown. The standard manual used for diagnosis of mental disorders in the United States is the Diagnostic and Statistical Manual of Mental Disorders. Most recently revised in 1994, this manual now is in its fourth edition (American Psychiatric Association, 1994, hereinafter cited in this report as DSM-IV). The first edition was published in 1952 by the American Psychiatric Association; subsequent revisions, which were made on the basis of field trials, analysis of data sets, and systematic reviews of the research literature, have sought to gain greater objectivity, diagnostic precision, and reliability. DSM-IV organizes mental disorders into 16 major diagnostic classes listed in Table 2-5. For each disorder within a diagnostic class, DSPUI;IV enumerates specific criteria for making the diagnosis. DSM-IV also.lists diagnostic "subtypes" for some disorders. A subtype is a subgroup within a diagnosis that confers greater specificity. DSM-IV is descriptive in its listing of symptoms and does not take a position about underlying causation. Table 2-5. Major Diagnostic Classes of Mental Disorders (DSM-IV1 Disorders usually first diagnosed in infancy, childhood, or adolescence Delerium, dementia, and amnestic and other cognitive disorders Mental disorders due to a general medical condition Substance-related disorders Schizophrenia and other psychotic disorders Mood disorders Anxiety disorders Somatoform disorders Factitious disorders Dissociative disorders Sexual and gender identity disorders Eating disorders Sleep disorders Impulse-control disorders Adjustment disorders Personality disorders 44 DSM-IV and its predecessors* represent a "nioue approach to diagnosis by a professional field. No other sphere of health care has created ,"ch an extensive compendium of all of its Jisorders with explicit diagnostic criteria. The if'orld Health Organization's international CILIxSification ofDiseases (10th edition, 1992) is a valuable compendium of all diseases. Its mental health categories are expanded upon in DSM-IV. The ~,rternationaf C~assijication ofDiseases (ICD) is the official classification for mortality and morbidity statistics for all signatories to theU.N. Charter establishing the World Health Organization. ICD-9CM (9th edition, Clinical Xlodification, 1991) is still the official classification for the Health Care Financing Administration. Knowledge about diagnosis continues to evolve. Evolution in the diagnosis of mental disorders generally reflects greater understanding of disorders as well as the influence of social norms. Years ago, for instance, addiction to tobacco was not viewed as a disorder, but today it l'alls under the category of "Substance-Related Disorders." Although DSM-IV strives to cover all populations, it is not without limitations. The difficulties encountered in diagnosing mental disorders in children, older persons, and racial and ethnic minority groups are discussed later in this chapter and throughout this report. Diagnosis rests on clinician judgment about whether clients' symptom patterns and impairments of functioning meet diagnostic criteria. Cultural differences in emotional expression and social behavior can be misinterpreted as "impaired" if clinicians are not sensitive to the cultural context and meaning of exhibited symptoms, a topic discussed later in this chapter in Overview of Cultural Diversity and Mental Health Services. ' DSM-1 (American Psychiatric Association, 1952), DSM-II (Amerkan Psychiatric Association, 1968), DSM-III (American Psychiatric Association, 1979). and DSM-III-R (American Psychiatric Association, 1987). Epidemiology of Mental Illness Few families in the United States are untouched by mental illness. Determining just how many people have mental illness is one of the many purposes of the field of epidemiology. Epidemiology is the study of patterns of disease in the population. ,Among the key terms of this discipline, encountered throughout this report, are incidence, which refers to new cases of a condition which occur during a specified period of time, and prevalence, which refers to cases (i.e., new and existing) of a condition observed at a point in time or during a period of time.*According to current epidemiological estimates, at least one in five people has a diagnosable mental disorder during the course of a year (i.e., l-year prevalence). Epidemiological estimates have shifted over time because of changes in the definitions and diagnosis of mental health and mental illness. In the early 1950s the rates of mental illness estimated by epidemiologists were far higher than those of today. One study, for example, found 81.5 percent of the population of Manhattan, New York, to have had signs and symptoms of mental distress (Srole, 1962). This led the authors of the study to conclude that mental illness was widespread. However, other studies began to find lower rates when they used more restrictive definitions that reflected more contemporary views about mental illness. Instead of classifying anyone with signs and symptoms as being mentally ill, this more recent line of epidemiological research only identified people as mentally ill if they had a cluster of signs and symptoms that, when taken together, impaired people's ability to function (Pasamanick, 1959; Weissman et al., 1978). By 1978, the President's Commission on Mental Health (1978) concluded conservatively that the annual prevalence of specific mental disorders in the United States was about 15 percent. This figure comports with recent estimates of the extent of mental illness in the population. Even as this figure has become more sharply delineated, the older and larger estimates underscore the magnitude of mental distress in the The Fundamentals of Mental Health and Mental Illness 45 Mental Health: A Report of the Surgeon General population, which this report refers to as "mental health problems." Adults The current prevalence estimate is that about 20 percent of the U.S. population are affected by mental disorders during a given year. This estimate comes from two epidemiologic surveys: the Epidemiologic Catchment Area (ECA) study of the early 1980s and the National Comorbidity Survey (NCS) of the early 1990s. Those surveys defined mental illness according to the prevailing editions of the Diagnostic and Statistical Manual of Mental Disorders (i.e., DSM-III and DSM-III-R). The surveys estimate that during a 1 -year period, .22 to 23 percent of the U.S. adult population-or 44 million people -have diagnosable mental disorders, according to reliable, established criteria. In general, 19 percent of the adult U.S. population have a mental disorder alone (in 1 year); 3 percent have both mental and addictive disorders; and 6 percent have addictive disorders alone.3 Consequently, about 28 to 30 percent of the population have either a mental or addictive disorder (Regier et al., 1993b; Kessler et al., 1994). Table 2-6 summarizes the results synthesized from these two large national surveys. Individuals with co-occurring disorders (about 3 percent of the population in 1 year) are more likely to experience a chronic course and to utilize services than are those with either type of disorder alone. Clinicians, program developers, and policy- makers need to be aware of these high rates of comorbidity-about 15 percent of those with a mental disorder in 1 year (Regier et al., 1993a; Kessler et al., 1996). Based on data on functional impairment, it is estimated that 9 percent of all U.S. adults have the mental disorders listed in Table 2-6 and experience some significant functional impairment (National ' Although addictive disorders are included as mental disorders in the DSM classification system, the ECA and NCS distinguish between addictive disorders and (all other) mental disorders. Epidemiologic data in this report follow that convention. Advisory Mental Health Council [NAMHC], 1993). Most (7 percent of adults) have disorders that persist for at least 1 year (Regier et al., 1993b; Regier et al., in press). A subpopulation of 5.4 percent of adults is considered to have a "serious" mental illness (SMI) (Kessler et al., 1996). Serious .mental illness is a term defined by Federal regulations that generally applies to mental disorders that interfere with some area of social functioning. About half of those with SMI (or 2.6 percent of all adults) were identified as being even more seriously affected, that is, by having "severe and persistent" mental illness (SPMI) (NAMHC, 1993; Kessler et al., 1996). This category includes schizophrenia, bipolar disorder, other severe forms of depression, panic disorder, and obsessive- compulsive disorder. These disorders and the problems faced by these special populations with SMI and SPMI are described further in subsequent chapters. Among those most severely disabled are the approximately 0.5 percent of the population who receive disability benefits for mental health- related reasons from the Social Security Administration (NAMHC, 1993). Children and Adolescents The annual prevalence of mental disorders in children and adolescents is not as well documented as that for adults. About 20 percent of children are estimated to have mental disorders with at least mild functional impairment (see Table 2-7). Federal regulations also define a sub-population of children and adolescents with more severe functional limitations, known as "serious emotional disturbance" (SED).4 Children and adolescents with SED number approximately 5 to 9 percent of children ages 9 to 17 (Friedman et al., 1996b). 4 The term "serious emotional disturbance" is used in a variety of Federal statutes in reference to children under the age of 18 with a diagnosable mental health problem that severely disrupts their ability to function socially. academically, and emotionally. The term does not signify any particular diagnosis; rather, it is a legal term that triggers a host of mandated services to meet the needs of these children. 46 The Fundamentals of Mental Health and Mental Illness Table 2-6. Best estimate l-year prevalence rates based on ECA and NCS, ages 18-54 4ny Anxiety Disorder 13.1 18.7 16.4 Simple Phobia 8.3 8.6 6.3 Social Phobia 2.0 7.4 2.0 Agoraphobia GAD (::E)* 3.7 4.9 3.4 3.4 Panic Disorder 1.6 1.6 OCD (kg 2.4 PTSD 3.6 3.6 .- ._ . . _` . .;hx.b& any Mood Disorder MD Episode Unipolar MD Dysthymia Bipolar I Bipolar II .I. .- ~ .",?>.4YFp .id`i'd. Schizophrenia Nonaffective Psychosis Somatization ASP Anorexia Nervosa Severe Cognitive Impairment 7.1 11.1 7.1 6.5 10.1 6.5 5.3 8.9 5.3 1.6 2.5 1.6 1.1 1.3 1.1 0.6 0.2 0.6 .I.*= .&.?: 1.3 1.3 0.2 0.2 0.2 - 0.2 2.1 - 2.1 0.1 0.1 1.2 - 1.2 Anv Disorder 19.5 23.4 21 .o `Numbers in parentheses indicate the prevalence of the disorder without any comorbidity. These rates were calculated using the NCS data for GAD and PTSD, and the ECA data for OCD. The rates were not used in calculating the any anxiety disorder and any disorder totals for the ECA and NCS columns. The unduplicated GAD and PTSD rates were added to the best estimate total for any anxiety disorder (3.3%) and any disorder (1.5%). "In developing best-estimate 1 -year prevalence rates from the two studies, a conservative procedure was followed that had previously been used in an independent scientific analysis comparing these two data sets (Andrews, 1995). For any mood disorder and any anxiety disorder, the lower estimate of the two surveys was selected, which for these data was the ECA. The best estimate rates for the individual mood and anxiety disorders were then chosen from the ECA only, in order to maintain the relationships between the individual disorders. For other disorders that were not covered in both surveys, the available estimate was used. Key to abbreviations: ECA, Epidemiologic Catchment Area; NCS, National Comorbidity Study; GAD, generalized anxiety disorder; OCD, obsessive-compulsive disorder; PTSD, post-traumatic stress disorder; MD, major depression; ASP, antisocial personality disorder. Source: D. Regier, W. Narrow, & D. Rae, personal communication, 1999 41 Mental Health: A Report of the Surgeon General Table 2-7. Children and adolescents ages 9 to 17 with mental or addictive disorders,* combined MECA sample Prevalence (%) Anxiety disorders 13.0 Mood disorders 6.2 Disruptive disorders 10.3 Substance use disorders 2.0 Any disorder 20.9 *Disorders include diagnosis-specific impairment and Child Global Assessment Scale ~70 (mild global impairment). Source: Shaffer et al., 1996 Not all mental disorders identified in childhood and adolescence persist into adulthood, even though the prevalence of mental disorders in children and adolescents is about the same as that for adults (i.e., about 20 percent of each age population). While some disorders do continue into adulthood, a substantial fraction of children and adolescents recover or ."grow out of' a disorder, whereas, a substantial fraction of adults develops mental disorders in adulthood. In short, the nature and distribution of mental disorders in young people are somewhat different from those of adults. Older Adults The annual prevalence of mental disorders among older adults (ages 55 years and older) is also not as well documented as that for younger adults. Estimates generated from the ECA survey indicate that 19.8 percent of the older adult population have a diagnosable mental disorder during a l-year period (Table 2-8). Almost 4 percent of older adults have SMI, and just under 1 percent has SPMI (Kessler et al., 1996); these figures do not include individuals with severe cognitive impairments such as Alzheimer's disease. Future Directions for Epidemiology The epidemiology of mental disorders is somewhat handicapped by the difficulty of identifying a "case" of a mental disorder. "Case" is an Table 2-9. Best estlmate prevalence rates based I I L on Epldemiolo@c Catchment Area, age 55+ Prevalence (%) 9ny Anxiety Disorder 11.4 Simple Phobia 7.3 Social Phobia 1 .o Agoraphobia 4.1 Panic Disorder 0.5 Obsessive-Compulsive Disorder 1.5 ?m Any Mood Disorder 4.4 Major Depressive Episode 3.8 Unipolar Major Depression 3.7 Dysthymia 1.6 Bipolar I 0.2 Bipolar II 0.1 Schizophrenia Somatization Antisocial Personality Disorder 0.0 Anorexia Nervosa Severe Cognitive Impairment Source: D. Regier, W. Narrow, & D. Rae, personal com- munication, 1999 epidemiological term for someone who meets the criteria for a disease or disorder. It is not always easy to establish a threshold for a mental disorder, particularly in light of how common symptoms of mental distress are and the lack of objective, physical symptoms. It is sometimes difficult to determine when a set of symptoms rises to the level of a mental disorder, a problem that affects other areas of health (e.g., criteria for certain pain syndromes). In many cases, symptoms are not of sufficient intensity or duration to meet the criteria for a disorder and the threshold may vary from culture to culture. Diagnosis of mental disorders is made on the basis of a multidimensional assessment that takes into account observable signs and symptoms of 48 The Fundamentals of Mental Health and Mental Illness illness, the course and duration of illness, response [o treatment. and degree of functional impairment. one Problem has been that there is no clearly ,,,easurable threshold for functional impairments. Efforts are currently under way in the epidemiology ,,f mental disorders to create a threshold, or agreed- uPon minimum level of functional limitation, that ,hould be required to establish a "case" (i.e., a clinically significant condition). Epidemiology reflecting the state of psychiatric nosology during the Past two decades has focused primarily on sbrmptom clusters and has not uniformly abplied-or, at times, even measured-the level of Jysfunction. Ongoing reanalyses of existing cpidemiological data are expected to yield better understanding of the rates of mental disorder and dysfunction in the population. Another limitation of contemporary mental health knowledge is the lack of standard measures of "need for treatment," particularly those which arc culturally appropriate. Such measures are at the heart of the public health approach to mental health. Current epidemiological estimates therefore cannot definitively identify those who are in need of treatment. Other estimates presented, in Chapter 6 indicate that some individuals with. mental disorders are in treatment and others are not; some are seen in primary care settings and others in specialty care. In the absence of valid measures of riced.. rates of disorder estimated in epidemiological surveys serve as an imperfect proxy for the need for care and treatment (Regier et al., in press). Subsequent sections of this report reveal the Population basis of our understanding of mental health. Where appropriate, the report discusses mental health and illness across the entire Population. At other times, the focus is on care in specialized mental health settings, primary health care, schools, the criminal justice system, and even the streets. A mainstream public health and Population-based perspective demands such a broad view of mental health and mental illness. Costs of Mental Illness The costs of mental illness are .exceedingly high. Although the question of cost is discussed more fully in Chapter 6, a few of the central findings are presented here. The direct costs of mental health services in the United States in 1996 totaled $69.0 billion. This figure represents 7.3 percent of total health spending. An additional $17.7 billion was spent on Alzheimer's disease and $12.6 billion on substance abuse treatment. Direct costs correspond to spending for treatment and rehabilitation nationwide. When economists calcblate the costs of an illness, they also strive to identify indirect costs. Indirect costs can be defined in different ways, but here they refer to lost productivity at the workplace, school, and home due to premature death or disability. The indirect costs of mental illness were estimated in 1990 at $78.6 billion (Rice & Miller, 1996). More than 80 percent of these costs stemmed from disability rather than death because mortality from mental disorders is relatively low. Overview of Etiology The precise causes (etiology) of most mental disorders are not known. But the key word in this statement is precise. The precise causes of most mental disorders-or, indeed, of mental health- may not be known, but the broad forces that shape them are known: these are biological, psycho- logical, and social/cultural factors. What is most important to reiterate is that the causes of health and disease are generally viewed as a product of the interplay or interaction between biological, psychological, and sociocultural factors. This is true for all health and illness, including mental health and mental illness. For instance, diabetes and schizophrenia alike are viewed as the result of interactions between biological, psychological, and sociocultural influences. With these disorders, a biological predisposition is necessary but not sufficient to explain their occurrence (Barondes, 1993). For other disorders, 49 Mental Health: A Report of the Surgeon General a psychological or sociocultural cause may be necessary, but again not sufficient. As described in the section on modern neuroscience, the brain and behavior are inextricably linked by the plasticity of the nervous system. The brain is the organ of mental function; psychological phenomena have their origin in that complex organ. Psychological and sociocultural phenomena are represented in the brain through memories and learning, which involve structural changes in the neurons and neuronal circuits. Yet neuroscience does not intend to reduce all phenomena to neurotransmission or to reinterpret them in a new language of synapses, receptors, and circuits. Psychological and sociocultural events.and phenomena continue to have meaning for mental health and mental illness. Much of the research that is presented in the remainder of this report draws on theories and investigations that predate the more modern view of integrative neuroscience. It is still meaningful, however, to speak of the interaction of biological and psychological and sociocultural factors in health and illness. That is where the overview of etiology begins-with the biopsychosocial model of disease, followed by an explanation of important terms used in the study of etiology. Then, against the backdrop of the introductory section on brain and behavior, the following sections address biological and psychosocial influences on mental health and mental illness, a separation that reflects the distinctive research perspectives of past decades. The overview of etiology draws to a close with a discussion of the convergence of biological and psychosocial approaches in the study of mental health and mental illness. Biopsychosocial Model of Disease The modern view that many factors interact to produce disease may be attributed to the seminal work of George L. Engel, who in 1977 put forward the Biopsychosocial Model of Disease (Engel, 1977). Engel's model is a framework, rather than a set of detailed hypotheses, for understanding health and disease. To many scientists, the model lacks sufficient specificity to make predictions about the given cause or causes of any one disorder. Scientists want to find out what specifically is the contribution of different factors (e.g., genes, parenting, culture, stressful events) and how they operate. But the purpose of. the biopsychosocial model is to take a broad view, to assert that simply looking at biological factors alone-which had been the prevailing view of disease at the time Engel was writing-is not sufficient to explain health and illness. According to Engel's `model, biopsychosocial factors are involved in the causes, manifestation, course, and outcome of health and disease, including mental disorders. The model certainly fits with common experience. Few people with a condition such as heart disease or diabetes, for instance, would dispute the role of stress in aggravating their condition. Research bears this out and reveals many other relationships between stress and disease (Cohen & Herbert, 1996; Baum & Posluszny, 1999). One single factor in isolation-biological, psychological, or social-may weigh heavily or hardly at all, depending on the behavioral trait or mental disorder. That is, the relative importance or role of any one factor in causation often varies. For example, a personality trait like extroversion is linked strongly. to genetic factors, according to identical twin studies (Plomin et al., 1994). Similarly, schizophrenia is linked strongly to genetic factors, also according to twin studies (see Chapter 4). But this does not mean that genetic factors completely preordain or fix the nature of the disorder and that psychological and social factors are unimportant. These social factors modify expression and outcome of disorders. Likewise, some mental disorders, such as post-traumatic stress disorder (PTSD), are clearly caused by exposure to an extremely stressful event, such as rape, combat, natural disaster, or concentration camp (Yehuda, 1999). Yet not everyone develops PTSD after such exposure. On average, about 9 50 i,crccnt do (Breslau et al., 1998), but estimates are higher for particular types of trauma. For women ,, ho are victims of crime, one study found the ptcvalence of PTSD in a representative sample of I\ omen to be 26 percent (Resnick et al., 1993). The likelihood of developing PTSD is related to p,-rtrauma vulnerability (in the form of genetic, biological. and personality factors), magnitude of the stressful event, preparedness for the event, and rl,r quality of care after the event (Shalev, 1996). The relative roles of biological, psychological, or social factors also may vary across individuals and across stages of the life span. In some people, for example, depression arises primarily as a result of exposure to stressful life events, whereas in others the foremost cause of depression is genetic predisposition. Understanding Correlation, Causation, and Consequences (\ny discussion of the etiology of mental health and tncntal illness needs to distinguish three key terms: correlation, causation, and consequences. These terms are often confused. All too frequently a biological change in the brain (a lesion) is purported to be the "cause" of a mental'disorder, based on finding an association between the lesion and a mental disorder. The fact is that any simple association-or correlation-cannot and does not, by itself, mean causation. The lesion could be a correlate, a cause of, or an effect of the mental disorder. When researchers begin to tease apart etiology, they usually start by noticing correlations. A correlation is an association or linkage of two (or more) events. A correlation simply means that the events are linked in some way. Finding a correlation between stressful life events and depression would prompt more research on causation. Does stress cause depression? Does depression cause stress? Or are they both caused by an unidentified factor? These would be the questions guiding research. But, with correlational The Fundamentals of Mental Health and Mental Illness research, several steps are needed before causation can be established. If a correlational study shows that a stressful event is associated with an increased probability for depression and that the stress usually precedes depression's onset, then stress is called a "risk factor" for depression.5 Risk factors are biological, psychological, or sociocultural variables that increase the probability for developing a disorder and antedate its onset (Garmezy, 1983; Werner & Smith, 1992; Institute of Medicine [IOM], 1994a). For each mental disorder, there are likely to be multiple risk factors, which are woven together in a complex chain of causation (IOM, 1994a). Some risk factors may carry more weight than others, and the interaction of risk factors may be additive or synergistic. Establishing causation of mental health and mental illness is extremely difficult, as explained in Chapter 1. Studies in the form of randomized, controlled experiments provide the strongest evidence of causation. The problem is that experimental research in humans may be logistically, ethically, or financially impossible. Correlational research in humans has thus provided much of what is known about the etiology of mental disorders. Yet correlational research is not as strong as experimental research in permitting inferences about causality. The establishment of a cause and effect relationship requires multiple studies and requires judgment about the weight of all the evidence. Multiple correlational studies can be used to support causality, when, for example, evaluating the effectiveness of clinical treatments (Chambless et al., 1996). But, when studying etiology, correlational studies are, if possible, best combined with evidence of biological plausibility s Chapter 4 contains a fuller discussion of the relationship between stress and depression. In common parlance, stress refers either to the stressful event or to the individual's response to the event. However, mental health professionals distinguish the two by referring to the external events as the "stressor" (or stressful life event) and to the individual's response as the "stress response." 51 Mental Health: A Report of the Surgeon General (IOM, 1994b).6 This means that correiational findings should fit with biological, chemical, and physical findings about mechanisms of action relating to cause and effect. Biological plausibility is often established in animal models of disease. That is why researchers seek animal models in which to study causation. In mental health research, there are some animal models-such as for anxiety and hyperactivity-but a major problem is the difficulty of finding animal models that simulate what is often uniquely human functioning. The search for animal models, however, is imperative. Consequences are defined as the later outcomes of a disorder. For example, the most serious consequence of depression in older people is increased mortality from either suicide or medical illness (Frasure-Smith et al., 1993, 1995; Conwell, 1996; Penninx et al., 1998). The basis for this relationship is not fully known. The relationship between depression and suicide in adolescents is presented in Chapter 3. Putting this all together, the biopsychosocial model holds that biological, psychological, or social factors may be causes, correlates, and/or consequences in relation to menial health and mental illness. A stressful life event, such as receiving the news of a diagnosis of cancer, offers a graphic example of a psychological event that causes immediate bi,ological changes and later has psychological, biological, and social consequences. When a patient receives news of the cancer diagnosis, the brain's sensory cortex simultan- eously registers the information (a correlate) and sets in motion biological changes that cause the heart to pound faster. The patient may experience an almost immediate fear of death that may later escalate to anxiety or depression. This certainly has been established for breast cancer patients (Farragher, 1998). Anxiety and depression are, in ' Other types of information used to establish cause and effect relationships are the strength and consistency of the association, time sequence information, dose-response relationships, and disappearance of the effect when the cause is removed. this case, consequences of the cancer diagnosis,' although the exact mechanisms are not understood. Being anxious or depressed may prompt further changes in behavior, such as social withdrawal. So there may be social consequences to the diagnosis as well. This example is designed to lay out some of the complexity of the biopsychosocial model applied to mental health and mental illness. Biological Influences on Mental Health and Mental Illness There are far-reaching biological and physical influences on mental health and mental illness. The major categories are genes, infections, physical trauma, nutrition, hormones, and toxins (e.g., lead). Examples have been noted throughout Chapter 1 and earlier in this chapter. This section focuses on the first two categories-genes and infections-for these are among the most exciting and intensive areas of research relating to biological influences on mental health and mental illness. The Genetics of Behavior and Mental illness That genes influence behavior, normal and abnormal, has long been established (Plomin et al., 1997). Genes influence behavior across the animal spectrum, from the lowly fruitfly all the way to humans. Sorting out which genes are involved and determining how they influence behavior present the greatest challenge. Research suggests that many mental disorders arise in part from defects not in single genes, but in multiple genes. However, none of the genes has yet been pinpointed for common mental disorders (National Institute of Mental Health [NIMH], 1998). The human genome contains approximately 80,000 genes that occupy approximately 5 percent of the DNA sequences of the human genome. By the spring of 2000, the human genome project will have provided an initial rough draft version of the entire sequence of the human genome, and in the ' Anxiety and depression may in some cases be caused by hormonal changes related to the tumor itself. 52 The Fundamentals of Mental Health and Mental Illness ensuing years, gaps in the sequence will be closed, errors will be corrected, and the precise boundaries \,f genes will be identified. ln parallel, clinical medicine is studying the ;tgcregation of human disease in families. This se c'ffort includes the study of mental illness, most notably schizophrenia, bipolar disorder (manic depressive illness), early onset depression, autism, mention-deficit/hyperactivity disorder, anorexia uervosa. panic disorder, and a number of other mental disorders (NIMH, 1998). From studying how these disorders run in families, and from initial molecular analyses of the genomes of these families, we have learned that heredity-that `is, genes-plays a role in the transmission of vulnerability of all the aforementioned disorders from generation to generation. But we have also learned that the transmission of risk is not simple. Certain human diseases such ;LS Huntington's disease and cystic fibrosis result from the transmission of a mutation-that is, a rlclcteriously altered gene sequence-at one location in the human genome. In these diseases, a. single mutation has everything to say about whether one will get the illness. The transmission of a trait due to a single gene in the human genome is called hlendelian transmission, after the Austrian monk, (lrcgor Mendel, who was the first to develop principles of modern genetics and who studied traits due to single genes. When a single gene determines the presence or absence of a disease or other trait, genes are rather easy to discover on the hasis of modern methods. Indeed, for almost all hlrndelian disorders across medicine that affect more than a few people, the genes already have heen identified. ln contrast to Mendelian disorders, to our knowledge, all mental illnesses and all normal variants of behavior are genetically complex. What this means is that no single gene or even a combination of genes dictates whether someone \vill have an illness or a particular behavioral trait. Rather. mental illness appears to result from the interaction of multiple genes that confer risk, and this risk is converted into illness by the interaction of genes with environmental factors. The implications for science are, first, that no gene is equivalent to fate for mental illness. This gives us hope that modifiable environmental risk factors can eventually be identified and become targets for prevention efforts. In addition, we recognize that genes, while significant in their aggregate contribution to risk, may each contribute only a small increment, and, therefore, will be difficult to discover. As a result, however, of the Human Genome Project, we will know the sequence of each human gene and the common variants for each gene throughout the human race. With this information, combined with modern technologies, we will in the coming years identify genes that confer risk of specific mental illnesses. This information will be of the highest importance for several reasons. First, genes are the blueprints of cells. The products of genes, proteins, work together in pathways or in building cellular structures, so that finding variants within genes will suggest pathways that can be targets of opportunity for the development of new therapeutic interventions. Genes will also be important clues to what goes wrong in the brain when a disease occurs. For example, once we know that a certain gene is involved in risk of a particular mental illness such as schizophrenia or autism, we can ask at what time during the development of the brain that particular gene is active and in which cells and circuits the gene is expressed. This will give us clues to critical times for intervention in a disease process and information about what it is that goes wrong. Finally, genes will provide tools for those scientists who are searching for environmental risk factors. Information from genetics will tell us at what age environmental cofactors in risk must be active, and genes will help us identify homogeneous populations for studies of treatment and of prevention. Heritability refers to how much genetics con- tributes to the variation of a disease or trait in a population at a given point in time (Plomin et al., Mental Health: A Report of the Surgeon General 1997). Once a disorder is established as running in families, the next step is to determine its heritability (see below), then its mode of transmission, and, lastly, its location through genetic mapping (Lombroso et al., 1994). One powerful method for estimating heritability is through twin studies.* Twin studies often compare the frequency with which identical versus fraternal twins display a disorder. Since identical twins are from the same fertilized egg, they share the exact genetic inheritance. Fraternal twins are from separate eggs and thereby share only 50 percent of their genetic inheritance. If a disorder is heritable, identical twins should have a higher .rate of concordance-the expression of the trait by both members of a twin pair-than fraternal twins. Such studies, however, do not furnish information about which or how many genes are involved. They just can be used to estimate heritability. For example, the heritability of bipolar disorder, according to the most rigorous twin study, is about 59 percent, although other estimates vary (NIMH, 1998). The heritability of schizophrenia is estimated, on the basis of twin studies, at a somewhat higher level (NIMH, 1998). Even with a high level of heritability, however, it is essential to point out that environmental factors (e.g., psychosocial environment, nutrition, health care access) can play a significant role in the severity and course of a disorder. Another point is that environmental factors may even protect against the disorder developing in the first place. Even with the relatively high heritabili- ty of schizophrenia, the median concordance rate among identical twins is 46 percent' (NIMH, 1998), meaning that in over half of the cases, the second * Establishing that a disorder runs in families could suggest environmental and/or genetic influences because families share genes and environment. Comparing identical versus fraternal twins assumes that their shared environments are about equal, thereby providing insight about genetic influences. Such comparisons are further enhanced by studies of twins (identical vs. fraternal) separated at birth and adopted by different families. 9 The median concordance rate for identical twins is only 14 percent (NIMH, 1998). twin does not manifest schizophrenia even though he or she has the same genes as the affected twin. This implies that environmental factors exert a significant role in the onset of schizophrenia. Infectious Influences It has been known since the early part of the 20th century that infectious agents can penetrate into the brain where they can cause mental disorders. A highly common mental disorder of unknown etiology at the turn of the century, termed "general paresis," turned out to be a late manifestation of syphilis. The sexually transmitted infectious agent-Treponema pallidurn-first caused symptoms in reproductive organs and then, sometimes years later, migrated to the brain where it led to neurosyphilis. Neurosyphilis was manifest by neurological deterioration (including psychosis), paralysis, and later death. With the wide availability of penicillin after World War II, neurosyphilis was virtually eliminated (Barondes, 1993). Neurosyphilis may be thought of as a disease of the past (at least in the developed world), but dementia associated with infection by the human immunodeficiency virus (HIV) is certainly not. HIV-associated dementia continues to encumber HIV-infected individuals worldwide. HIV infection penetrates into the brain, producing a range of progressive cognitive and behavioral impairments. Early symptoms include impaired memory and concentration, psychomotor slowing, and apathy. Later symptoms, usually appearing years after infection, include global impairments marked by mutism, incontinence, and paraplegia (Navia et al., 1986). The prevalence of HIV-associated dementia varies, with estimates ranging from 15 percent to 44 percent of patients with HIV infection (Grant et al., 1987; McArthur et al., 1993). The high end of this estimate includes patients with subtle neuropsychological abnormalities. What is remarkable about HIV-associated dementia is that it appears to be caused not by direct infection of neurons, but by infection of immune cells known as 54 The Fundamentals of Mental Health and Mental Illness lnacrophages that enter the brain from the blood. The macrophages indirectly cause dysfunction and death in nearby neurons by releasing soluble toxins , Epstein & Gendelman, 1993). Besides HIV-associated dementia and neurosyphilis, other mental disorders are caused by infectious agents. They include herpes simplex encephalitis, measles encephalomyelitis, rabies encephalitis, chronic meningitis, and subacute ,clerosing panencephalitis (Kaplan & Sadock, 1998). More recently, research has uncovered an infectious etiology to one form of obsessive- compulsive disorder, as explained below. PANDAS ln the late 198Os, it was discovered that some children with obsessive-compulsive disorder (OCD) experienced a sudden onset of symptoms soon after ;I streptococcal pharyngitis (Garvey et al., 1998). The symptoms were classic for OCD-concerns about contamination, spitting compulsions, and extremely excessive hoarding-but the abrupt onset was unusual. Further study of these children led to the identification of a new classification of OCD called PANDAS. This acronym stands for pediatric :tutoimmune neuropsychiatric disorders associated with streptococcal infection. PANDAS are distinct from classic cases of OCD because of their episodic clinical course marked by sudden symptom exacerbation linked to streptococcal infection, among other unique features. The exacerbation of symptoms is correlated with a rise in levels of antibodies that the child produces to fight the strep infection. Consequently, researchers proposed that PANDAS are caused by antibodies against the strep infection that also manage to attack the basal ganglia region of the child's brain (Garvey et al., 1998). In other words, the strep infection triggers the child's immune system to develop antibodies, which, in turn, may attack the child's brain, leading to obsessive and compulsive behaviors. Under this proposal, the strep infection does not directly induce the condition; rather, it may do so indirectly by triggering antibody formation. How the antibodies are so damaging to a discrete region of the child's brain and how this attack ignites OCD-like symptoms are two of the fundamental questions guiding research. Psychosocial Influences on Mental Health and Mental Illness This chapter thus far has highlighted some of the psychosocial influences on mental health and mental illness. Stressful life eyents, affect (mood and level of arousal), personality, and gender are prominent psychological influences. Social influences include parents, socioeconomic status, racial, cultural, and religious background, and interpersonal relationships. These psychosocial influences, taken individually or together, are integrated into many chapters of this report in discussions of epidemiology, etiology, risk factors, barriers to treatment, and facilitators to recovery. Since these psychosocial influences are familiar to the general reader, detailed description of each is beyond the scope of this section (with the exception of cultural influences, which are discussed in the Overview of Cultural Diversity and Mental Health Services section). Instead, this section summarizes the sweeping theories of individual behavior and personality that inspired a vast body of psychosocial research: psychodynamic theories, behaviorism, and social learning theories. The therapeutic strategies that arose from these theories, and modifications necessary to make them relevant to the changing demography of the U.S. population, are discussed in a later section, Overview of Treatment. Psychodynamic Theories Psychodynamic theories of personality assert that behavior is the product of underlying conflicts over which people often have scant awareness. Sigmund Freud (1856-1939) was the towering proponent of psychoanalytic theory, the first of the 20th-century psychodynamic theories. Many of Freud's Mental Health: A Report of the Surgeon General followers pioneered their own psychodynamic theories, but this section covers only psychoanalytic theory. A brief discussion of Freud's work contributes to an historical perspective of mental health theory and treatment approaches. Freud's theory of psychoanalysis holds two major assumptions: (1) that much of mental life is unconscious (i.e., outside awareness), and (2) that past experiences, especially in early childhood, shape how a person feels and behaves throughout life (Brenner, 1978). Freud's structural model of personality divides the personality into three parts-the id, the ego, and the superego. The id is the unconscious part that is the cauldron of raw drives, such as for sex or aggression. The ego, which -has conscious and unconscious elements, is the rational and reasonable part of personality. Its role is to maintain contact with the outside world in order to help keep the individual in touch with society. As such, the ego mediates between the conflicting tendencies of the id and the superego. The latter is a person's conscience that develops early in life and is learned from parents, teachers, ahd others. Like the ego, the superego has conscious and unconscious elements (Brenner, 1978). When all three parts of the personality are in dynamic equilibrium, the individual is thought to be mentally healthy. However, according to psychoanalytic theory, if the ego is unable to mediate between the id and the superego, an imbalance would occur in the form of psychological distress and symptoms of mental disorders. Psychoanalytic theory views symptoms as important only in terms of expression of underlying conflicts between the parts of personality. The theory holds that the conflicts must be understood by the individual with the aid of the psychoanalyst who would help the person unearth the secrets of the unconscious. This was the basis for psychoanalysis as a form of treatment, as explained later in this chapter. 56 Behaviorism and Social learning Theory Behaviorism (also called learning theory) posits that personality is the sum of an individual's observable responses to the outside world (Feldman, 1997). As charted by J. B. Watson and h. F. Skinner in the early part of the 20th century, behaviorism stands at loggerheads with psychodynamic theories, which strive to understand underlying conflicts. Behaviorism rejects the existence of underlying conflicts and an unconscious. Rather, it focuses on observable, overt behaviors that are' learned from the environment (Kazdin, 1996, 1997). Its application to treatment of mental problems, which is discussed later, is known as behavior modification. Learning is seen as behavior change molded by experience. Learning is accomplished largely through either classical or operant conditioning. Classical conditioning is grounded in the research of Ivan Pavlov, a Russian physiologist. It explains why some people react to formerly neutral stimuli in their environment, stimuli that previously would not have elicited a reaction. Pavlov's dogs, for example, learned to salivate merely at the sound of the bell, without any food in sight. Originally, the sound of the bell would not have elicited salvation. But by repeatedly pairing the sight of the food (which elicits salvation on its own) with the sound of the bell, Pavlov taught the dogs to salivate just to the sound of the bell by itself. Operant conditioning, a process described and coined by B. F. Skinner, is a form of learning in which a voluntary response is strengthened or attenuated, depending on its association with positive or negative consequences (Feldman, 1997). The strengthening of responses occurs by positive reinforcement, such as food, pleasurable activities, and attention from others. The attenuation or discontinuation of responses occurs by negative reinforcement in the form of removal of a pleasurable stimulus. Thus, human behavior is shaped in a trial and error way through positive and negative reinforcement, without any reference to inner conflicts or perceptions. What goes on inside The Fundamentals of Mental Health and Mental Illness the individual is irrelevant, for humans are equated \vith "black boxes." Mental disorders represented ,,,llladaptive behaviors that were learned. They Could be unlearned through behavior modification ,hehavior therapy) (Kazdin, 1996; 1997). The movement beyond behaviorism was sussion of heritability). Yet even with the most l,ighlY heritable traits or conditions, identical twins ,( lro share the same genetic endowment display ,n;trked differences. Identical twins, for example, ;,rc concordant for schizophrenia in 46 percent of ll;iirs (NIMH, 1998), meaning that more than 50 llcrcent of pairs are not concordant. Something yet utlkt~own about the environment protects against the development of schizophrenia in genetically itlcntical individuals (Plomin, 1996). How do nature and nurture interact? This ilucstion cannot be directly answered by twin \tudies. Animal models have proven to be fertile IFround for study of the mechanisms-at the ? niolecular and cellular level-by which nature and nurture interact. As reviewed earlier, research in different animal models has established that the environment can alter the structure andfunction of the central nervous system (Baily & Kandel, 1993). This holds true not only during early development, but also into adulthood. Nurture influences nature, right down to detectable changes in the brain. During development of the nervous system, each neuron forms myriad intricate synaptic connections with other neurons, the outcome of the interaction of genes and the environment described above. In this case, the environment is a very general term-it denotes the local extracellular environment surrounding the growing neuron, as well as what we traditionally think of as the environment (sensory environment, psychosocial environment, diet, etc.). When a neuron forms a synapse with its target cell, the pattern of activity, usually furnished by external environmental stimulation, strengthens or weakens the developing synapse. Only strengthened synaptic connections survive early development to form enduring connections, while weakened synaptic connections are eliminated (Shatz, 1993; Kandel et al., 1995). For example, kittens deprived of visual experience early in life sustain permanent disruption to synapses in parts of their visual cortex (Hubel & Wiesel, 1970). Later in the course of development, established patterns of connections still can be altered by the environment-through learning. Studies in a variety of animal models have found that certain forms of learning lead to changes in the structure and function of neurons. With long-term . memory-the long-term storage of learned information-these changes take the form of an enhanced number of synaptic connections and increased gene expression (Kandel et al., 1995). Increased gene expression appears to be for synthesis of new proteins needed for the structural changes occurring at the synapse (Bailey & Kandel, 1993). Researchers continue to probe for changes in the brain associated with mental disorders. They have found, for instance, that repeated stress from the environment affects the hippocampus, an area of the brain located deep within the cerebral hemispheres. Research in animals has shown that repeated stress triggers atrophy of dendrites of certain types of neurons in a segment of the hippocampus (Sapolsky, 1996; McEwen, 1998). Similarly, imaging studies in humans suggest that stress-related disorders (e.g., post-traumatic stress disorder) induce possibly irreversible atrophy of the hippocampus (McEwen & Magarinos, 1997). Anxiety disorders also alter neuroendocrine systems (Sullivan et al., 1998). These are some of the tantalizing ways in which nurture influences nature. The mental health field is far from a complete understanding of the biological, psychological, and sociocultural bases of development, but develop- pment clearly involves interplay among these influences. Understanding the process of develop- ment requires knowledge, ranging from the most fundamental level-that of gene expression and The Fundamentals of Mental Health and Mental Illness 61 Mental Health: A Report of the Surgeon General interactions between molecules and cells-all the way up to the highest levels of cognition, memory, emotion, and language. The challenge requires integration of concepts from many different disciplines. A fuller understanding of development is not only important in its own right, but it is expected to pave the way for our ultimate understanding of mental health and mental illness and how different factors shape their expression at different stages of the life span. Overview of Prevention The field of public health has long recognized the imperative of prevention to contain a major health problem (IOM, 1,988). The principles of pre- vention were first applied to infectious diseases in the form of mass vaccination, water safety, and other forms of public hygiene. As successes amassed, prevention came to be applied to other areas of health, including chronic diseases (IOM, 1994a). A landmark report published by the Institute of Medicine in 1994 extended the concept of prevention to mental disorders (IOM, 1994a). Reducing Risks for Mental Disorders evaluated the body of research on the prevention of mental disorders, offered new definitions of prevention, and provided recommendations on Federal policies and programs, among other goals. Preventing an illness from occurring is inherently better than having to treat the illness after its onset. In many areas of health, increased understanding of etiology and the role of risk and protective factors in the onset of health problems has propelled prevention. In the mental health field, however, progress has been slow because of two fundamental and interrelated problems: for most major mental disorders, there is insufficient understanding about etiology and/or there is an inability to alter the known etiology of a particular disorder. While these have stymied the develop- ment of prevention interventions, some successful strategies have emerged in the absence of a full understanding of etiology. Rigorous scientific trials have documented successful prevention programs in such areas as dysthymia and major depressive disorder (Munoz et al., 1987; Clarke et al., 1993, conduct problems (Berrento-Clement et al., 1984), and risky behaviors leading to HIV infection (Kalichman et al., in press) and low birthweight babies (Olds et al., 1986). Much progress also has been made to prevent the occurrence of lead poisoning, which, if unchecked, can lead to serious and persistent cognitive deficits in children (Centers for Disease Control and Prevention, 1991; Pirkle et al., 1994). Lastly, historical milestones' in prevention of mental illness led to the successful eradication of neurosyphilis, pellagra, and measles encephalo- myelitis (measles invasion of the brain) in the developed world. Definitions of Prevention The term "prevention" has different meanings to different people. It also has different meanings to different fields of health. The classic definitions used in public health distinguish between primary prevention, secondary prevention, and tertiary prevention (Commission on Chronic Illness, 1957). Primary prevention is the prevention of a disease before it occurs; secondary prevention is the prevention of recurrences or exacerbations of a disease that already has been diagnosed; and tertiary prevention is the reduction in the amount of disability caused by a disease to achieve the highest level of function. The Institute of Medicine report on prevention identified problems in applying these definitions to the mental health field (IOM, 1994a). The problems stemmed mostly from the difficulty of diagnosing mental disorders and from shifts in the definitions of mental disorders over time (see Diagnosis of Mental Illness). Consequently, the Institute of Medicine redefined prevention for the mental health field in terms of three core activities: prevention, treatment, and maintenance (IOM, 1994a). Prevention, according to the IOM report, is similar to the classic concept of primary prevention 62 t'rc,lll public health: it refers to interventions to ,\ard off the initial onset of a mental disorder. Ire,tment refers to the identification of individuals ,t irh mental disorders and the standard treatment tar those disorders, which includes interventions to reduce the likelihood of future co-occurring disorders. And maintenance refers to interventions ,llat are oriented to reduce relapse and recurrence ;,,,d to provide rehabilitation. (Maintenance incorporates what the public health field tmditionally defines as some forms of secondary aIld all forms of tertiary prevention.) The Institute of Medicine's new definitions .of prevention have been very important in conceptualizing th'e nature of prevention activities for mental disorders; however, the terms have not yet been universally adopted by mental health rusearchers. As a result, this report strives to use the terms employed by the researchers themselves. To avoid confusion, the report furnishes the rclcvant definition along with study descriptions. When the term "prevention" is used in this report withour a qualifying term, it refers to the prevention of the initial onset of a mental disorder or emotional or behavioral problem,. including prevention of comorbidity. First onset corresponds to the initial point in time when an individual's mental health problems meet the full criteria for a diagnosis of a mental disorder. Risk Factors and Protective Factors The concepts of risk and protective factors, risk reduction, and enhancement of protective factors (also sometimes referred to as fostering resilience) are central to most empirically based prevention Programs. Risk factors are those characteristics, variables, or hazards that, if present for a given individual, make it more likely that this individual, rather than someone selected at random from the general population, will develop a disorder (Garmezy, 1983; Werner & Smith, 1992; TOM, 1994a). TO qualify as a risk factor the variable must antedate the onset of the disorder. Yet risk factors are not static. They can change in relation to a The Fundamentals of Mental Health and Mental Illness developmental phase or a new stressor in one's life, and they can reside within the individual, family, community, or institutions. Some risks such as gender and family history are fixed; that is, they are not malleable to change. Other risk factors such as lack of social support, inability to read, and exposure to bullying can be altered by strategic and potent interventions (Coie & Krehbiel, 1984; Silverman, 1988; Olweus, 1991; Kellam & Rebok, 1992). Current research is focusing on the interplay between biological risk factors and psychosocial risk factors and how they can be modified. As explained earlier, even with' a highly heritable condition such as schizophrenia, concordance studies show that in over half of identical twins, the second twin does not have schizophrenia. This suggests the possibility of modifying the environment to eventually prevent the biological risk factor (i.e., the unidentified genes that contribute to schizophrenia) from being expressed. Prevention not only focuses on the risks associated with a particular illness or problem but also on protective factors. Protective factors improve a person's response to some environmental hazard resulting in an adaptive outcome (Rutter, 1979). Such factors, which can reside with the individual or within the family or community, do not necessarily foster normal development in the absence of risk factors, but they may make an appreciable difference on the influence exerted by risk factors (IOM, 1994a). There is much to be learned in the mental health field about the role of protective factors across the life span and within families as well as individuals. The potential for altering these factors in intervention studies is enormous. The construct of "resilience" is related to the concept of protective factors, but it focuses more on the ability of a single individual to withstand chronic stress or recover from traumatic life events. There are many different perceptions of what constitutes resilience or "competence," another related term. Despite the increasing popularity of these ideas, "virtually no intervention 63 Mental Health: A Report of the Surgeon General studies have been conducted that test the outcomes of resilience variables" (Grover, 1998). Preventive researchers use risk status to identify populations for intervention, and then they target risk factors that are thought to be causal and malleable and target protective factors that are to be enhanced. If the interventions are successful, the amount of risk decreases, protective factors increase, and the likelihood of onset of the potential problem also decreases. The risks for onset of a disorder are likely to be somewhat different from the risks involved in relapse of a previously diagnosed condition. This is an important distinction because at-risk terminology is used throughout the mental health intervention spectrum. The optimal treatment protocol for an individual with a serious mental condition aims to reduce the length of time the disorder exists, halt a progression of severity, and halt the recurrence of the original disorder, or if not possible, to increase the length of time between episodes (IOM, 1994a). To do this requires an assessment of the individual's specific risks for recurrence. Many mental health problems, especially in childhood, share some of the same risk factors for initial onset, so targeting those factors can result in positive outcomes in multiple areas. Risk factors that are common to many disorders include individual factors such as neurophysiological deficits, difficult temperament, chronic physical illness, and below-average intelligence; family factors such as severe marital discord, social disadvantage, overcrowding or large family size, paternal criminality, maternal mental disorder, and admission into foster care; and community factors such as living in an area with a high rate of disorganization and inadequate schools (IOM, 1994a). Also, some individual risk factors can lead to a state of vulnerability in which other risk factors may have more effect. For example, low birthweight is a general risk factor for multiple physical and mental outcomes; however, when it is combined with a high-risk social environment, it more consistently has poorer outcomes (McGauhey et al., 1991). The accumulation of risk factors usually increases the likelihood of onset of disorder, but the presence of protective factors can attenuate this to varying degrees. The concept of accumulation of risks in pathways that accentuate other risks has led prevention researchers to the concept of "breaking the chain at its weakest links" (Robins, 1970; IOM, 1994a). In other words, some of the risks, even though they contribute significantly to onset, may be less malleable than others to intervention. The preventive strategy is to change the risks that are most easily and quickly amen$ble to intervention. For example, it may be easier to prevent a child from being disruptive and isolated from peers by altering his or her classroom environment and increasing academic achievement than it is to change the home environment where there is severe marital discord and substance abuse. Because mental health is so intrinsically related to all other aspects of health, it is imperative when providing preventive interventions to consider the interactions of risk and protective factors, etiological links across domains, and multiple outcomes. For example, chronic illness, unemployment, substance abuse, and being the victim of violence can be risk factors or mediating variables for the onset of mental health problems (Kaplan et al., 1987). Yet some of the same factors also can be related to the consequences of mental health problems (e.g., depression may lead to substance abuse, which in turn may lead to lung or liver cancer). Overview of Treatment Introduction to Range of Treatments Mental disorders are treatable, contrary to what many think.12 An armamentarium of efficacious treatments is available to ameliorate symptoms. In I2 About 40 percent of those surveyed thought that they "didn't think anyone could help" as a reason for not seeking mental health treatment (Sussman et al., 1987). 64 The Fundamentals of Mental Health and Mental Illness t`a,.t. for most mental disorders, there is generally not just one but a range of treatments of proven CificXv. Most treatments fall under two general i2tegories. psychosocial and pharmacologicaLi \loreover. the combination of the two-known as ,nultimodal therapy-can sometimes be even more k factor may predispose them to higher rates of anxiety and depression (Nolen-Hoeksema et al., in press ). Treatment of Anxiety Disorders The anxiety disorders are treated with some form of counseling or psychotherapy or pharmacotherapy, either singly or in combination (Barlow & Lehman, 1996: March et al., 1997; American Psychiatric Association, 1998; Kent et al., 1998). Counseling and Psychotherapy Anxiety disorders are responsive to counseling and to a wide variety of psychotherapies. More severe and persistent symptoms also may require pharmacotherapy (American Psychiatric Association, 1998). During the past several decades, there has been increasing enthusiasm for more focused, time-limited therapies that address ways of coping with anxiety symptoms more directly rather than . exploring unconscious conflicts or other personal vulnerabilities (Barlow & Lehman, 1996). These therapies typically emphasize cognitive and behavioral assessment and interventions. The hallmarks of cognitive-behavioral therapies are evaluating apparent cause and effect relationships between thoughts, feelings, and behaviors, as well as implementing relatively straightforward strategies to lessen symptoms and reduce avoidant behavior (Barlow, 1988). A critical element of therapy is to increase exposure to the stimuli or situations that provoke anxiety. Without such therapeutic assistance, the sufferer typically withdraws from anxiety-inducing situations, inadvertently reinforcing avoidant or escape behavior. The therapist provides reassurance that the feared situation is not deadly and introduces a plan to enhance mastery. This plan may include approaching the feared situation in a graduated or stepwise hierarchy or teaching the patient to use responses that dampen anxiety, such as deep muscle relaxation or coping. One fundamental principle is that prolonged exposure to a feared stimulus reliably decreases cognitive and physiologic symptoms of anxiety (Marks, 1969; Barlow, 1988). With such experience generally comes greater self-efficacy and a greater willingness to encounter other feared stimuli. For panic disorder, interoceptive training (a type of conditioning technique) and breathing exercises are often employed to help the sufferer become more capable of recognizing and coping with the social cues, antecedents, or early signs of a panic attack. Cognitive interventions are used to counteract the exaggerated or catastrophic thoughts that characterize anxiety. For treatment of obsessive-compulsive disorder, the strategy of response prevention must be added to exposure to ensure that compulsions are not performed (Barlow, 1988). There is now extensive evidence that cognitive- behavioral therapies are useful treatments for a majority of patients with anxiety disorders (Chambless et al., 1998). Poorer outcomes are observed, however, in more complicated patient groups. With obsessive- compulsive disorder, approximately 20 to 25 percent of patients are unwilling to participate in therapy (March et al., 1997). Another major limitation of cognitive- behavioral therapies is not their effectiveness but, rather, the limited availability of skilled practitioners (Ballenger et al., 1998). It is possible that more traditional forms of therapy based on psychodynamic or interpersonal theories of anxiety also may prove to be effective treatments (Shear, 1995). However, these therapies have not yet received extensive empirical support. As a result, more traditional therapies are generally deemphasized in evidence-based treatment guidelines for anxiety disorders. 241 Mental Health: A Report of the Surgeon General Pharmacofherapy The medications typically used to treat patients with anxiety disorders are benzodiazepines, antidepressants, and the novel compound buspirone (Lydiard et al., 1996). In light of increasing awareness of numerous neurochemical alterations in anxiety disorders, many new classes of drugs are. likely to be developed, expressly targeting CRH and other neuroactive agents (Nemeroff, 1998). Benzodiazepines The benzodiazepines are a large class of relatively safe and widely prescribed medications that have rapid and profound antianxiety and sedative-hypnotic effects. The benzodiazepines are thought to exert their therapeutic effects by enhancing the inhibitory neurotransmitter systems utilizing GABA. Benzodiazepines bind to a site on the GABA receptor and act as receptor agonists (Perry et al., 1997). Benzodiazepines differ in terms of potency, pharmacokinetics (i.e., elimination half-life), and lipid solubility. The four benzodiazepines currently widely pre- scribed for treatment of anxiety disorders are diazepam, lorazepam, clonazepam, and alprazolam. Each is now available in generic formulations (Davidson, l998). Among these agents, alprazolam and lorazepam have shorter elimination half-lives-that is, are removed from the body more quickly-while diazepam and clonazepam have a long period of action (i.e., up to 24 hours). Diazepam also has multiple active metabolites, which increase the risk of "carryover" effects such as sedation and "hangover." Benzodiazepines that undergo conjugation appear to have longer elimination time in women, and oral contraceptive can decrease clearance (Dawlans, 1995). Since Asians are more likely to metabolize diazepam more slowly, they may require lower doses to achieve the same blood concentrations as Caucasians (Lin et al., 1997). Benzodiazepines have the potential for producing drug dependence (i.e., physiological or behavioral symptoms after discontinuation of use). Shorter acting compounds have somewhat greater liability because of more rapid and abrupt onset of withdrawal symptoms. Because the benzodiazepines do not have strong antiobsessional effects, their use in obsessive- compulsive disorder and post-traumatic stress disorder is generally viewed as palliative (i.e., relieving, but not eliminating symptoms). Rather, obsessive-compulsive disorder and post-traumatic stress disorder are more effectively treated by antidepressants, especially the SSRIs (as discussed below). When effective, benzodiazepines should be tapered after several months of use, although there is a substantial risk of relapse. Many clinicians favor a combined treatment approach for panic disorder and generalized inxiety disorder, in which benzodiazepines are used acutely in tandem with an antidepressant. The benzodiazepines are subsequently tapered as the antidepressant's therapeutic effects begin to emerge (American Psychiatric Association, 1998). Antidepressants Most antidepressant medications have substantial antianxiety and antipanic effects in addition to their antidepressant action (Kent et al., 1998). Moreover, a large number of antidepressants have antiobsessional effects (Perry et al., 1997). The observation that the tricyclic antidepressant imipramine had a different anxiolytic profile than diazepam helped to differentiate panic disorder from generalized anxiety disorder and, subsequently, social phobia. Clomipramine, a tricyclic antidepressant (TCA) with relatively potent reuptake inhibitory effects on serotonin (5HT) neurons, subsequently was found to be the only TCA to have specific antiobsessional effects (March et al., 1997). The importance of this effect on 5-HT was highlighted when the SSRIs became available. By the late 199Os, it became clear that all of the SSRIs have antiobsessional effects (Greist et al., 1995; Kent et al., 1998). Current practice guidelines rank the TCAs below the SSRIs for treatment of anxiety disorders because of the SSRIs' more favorable tolerability and safety profiles (March et al., 1997; American Psychiatric Association, 1998; Ballenger et al., 1998;). Nevertheless, there are patients who respond to the TCAs after failing to respond to one or more of t.he 242 newer agents. Similarly, although relatively rarely used, the monoamine oxidate inhibitors (MAOIs) have significant antiobsessional, antipanic, and anxiolytic effects (Sheehan et al., 1980; American Psychiatric Association, 1998). In the United States, the MAOIs phenelzine. tranylcypromine, and isocarboxazid (which has not been consistently marketed this decade) are seldom used unless simpler medication strategies have failed (American Psychiatric Association, 1998). The five drugs within the SSRI class-fluoxetine, sertraline, paroxetine, fluvoxamine, and citalopram-have emerged as the preferred type of antidepressant for treatment of anxiety disorders (Westenberg, 1996; Kent et al., 1998). In addition to well-established efficacy in obsessive-compulsive disorder, there is convincing and growing evidence of antipanic and broader anxiolytic effects (American Psychiatric Association, 1998; Kent et al., 1998). Treatment of panic disorder often requires lower initial doses and slower upward titration. By contrast, treatment for obsessive-compulsive disorder ultimately may entail higher doses (for example, 60 or 80 mg/day of fluoxetine or 200 mg per day of sertraline) and longer durations to achieve desired outcomes (Marchet al., 1997). As all of the SSRIs are currently protected by patents, there are no generic forms yet available. This adds to the direct costs of treatment. Cost may be offset indirectly, however, by virtue of need for fewer treatment visits and fewer concomitant medications, and cost likely will abate when these agents begin to lose patent protection in a few years. Other newer antidepressants, including venlafaxine, nefazodone, and mirtazapine, also may have significant antianxiety effects, for which clinical trials are under way (March et al., 1997; American Psychiatric Association, 1998). Paroxetine has been approved by the Food and Drug Administration (FDA) for social phobia, and sertraline is being developed for post-traumatic stress disorder. Nefazodone, which also is being studied in post-traumatic stress disorder, and mh-tazapine may possess lower levels of sexual side effects, a problem that complicates longer term treatment with SSRIs, venlafaxine, TCAs, and MAOIs (Baldwin & Birtwistle, 1998). Adults and Mental Health When effective in treating anxiety, antidepressants should be maintained for at least 4 to 6 months, then tapered slowly to avoid discontinuation-emergent activation of anxiety symptoms (March et al., 1997; American Psychiatric Association, 1998; Ballenger et al., 1998). Although less extensively researched than depression, it is likely that many patients with anxiety disorders may warrant longer term, indefinite treatment to prevent relapse or chronicity. Buspirone This azopyrine compound is a relatively selective 5- HT,, partial agonist (Stahl, 1996). It was approved by the FDA in the mid-1980s as an anxiolytic. However, unlike the benzodiazepines, buspirone is not habit forming and has no abuse potential. Buspirone also has a safety profile comparable to the SSRIs, and it is significantly better tolerated than the TCAs. Buspirone does not block panic attacks, and it is not efficacious as a primary treatment of obsessive- compulsive disorder or post-traumatic stress disorder (Stahl, 1996). B uspirone is most useful for treatment of generalized anxiety disorder, and it is now frequently used as an adjunct to SSRIs (Lydiardet al., 1996). Buspirone takes 4 to 6 weeks to exert therapeutic effects, like antidepressants, and it has little value for patients when taken on an "as needed" basis. Combinations of Psychotherapy and Pharmaco- therapy Some patients with anxiety disorders may benefit from both psychotherapy and pharmacotherapy treatment modalities, either combined or used in sequence (March et al., 1997; American Psychiatric Association, 1998). Drawing from the experiences of depression researchers, it seems likely that such combinations are not uniformly necessary and are probably more cost- effective when reserved for patients with more complex, complicated, severe, or comorbid disorders. The benefits of multimodal therapies for anxiety need further study. 243 Mental Health: A Report of the Surgeon General Mood Disorders In 1 year, about 7 percent of Americans suffer from mood disorders, a cluster of mental disorders best recognized by depression or mania (Table 4-l). Mood disorders are outside the bounds of normal fluctuations from sadness to elation. They have potentially severe consequences for morbidity and mortality. This section covers four mood disorders. As the predominant mood disorder, major depressive disorder (also known as unipolar major depression), garners the greatest attention. It is twice more common in women than in men, a gender difference that is discussed later in this section. The other mood disorders covered below are bipolar disorder, dysthymia, and cyclothymia. Mood disorders rank among the top 10 causes of worldwide disability (Murray & Lopez, 1996). Unipolat major depression ranks first, and bipolar disorder ranks in the top 10. Moreover, disability and suffering are not limited to the patient. Spouses, children, parents, siblings, and friends experience frustration, guilt, anger, financial hardship, and, on occasion, physical abuse in their attempts to assuage or cope with the depressed person's suffering. Women between the ages of 18 and 45 comprise the majority of those with major depression (Regier et al., 1993). Depression also has a deleterious impact on the economy, both in diminished productivity and in use of health care resources (Greenberg et al., 1993). In the workplace, depression is a leading cause of absenteeism and diminished productivity. Although only a minority seek professional help to relieve a mood disorder, depressed people are significantly more likely than others to visit a physician for some other reason. Depression-related visits to physicians thus account for a large portion of health care expenditures. Seeking another or a less stigmatized explanation for their difficulties, some depressed patients undergo extensive and expensive diagnostic procedures and then get treated for various other complaints while the mood disorder goes undiagnosed and untreated (Wells et al., 1989). Complications and Comorbidities Suicide is the most dreaded complication of major depressive disorders. About 10 to 15 percent of patients formerly hospitalized with depression commit suicide (Angst et al., 1999). Major depressive disorders account for about 20 to 35 percent of all deaths by suicide (Angst et al., 1999). Completed suicide is more common among those with more severe and/or psychotic symptoms, with late onset, with co-existing mental and addictive disorders (Angst et al., 1999), as well as among those who have experienced stressful life events, who have medical ill&sses, and who have a family history of suicidal behavior (Blumenthal, 1988). In the United States, men complete suicide four times as often as women; women attempt suicide four times as frequently as do men (Blumenthal, 1988). Recognizing the magnitude of this public health problem, the Surgeon General issued a Cull to Action on Suicide in 1999 (see Figure 4-l). Individuals with depression also face an increased risk of death from coronary artery disease (Glassman & Shapiro, 1998). Mood disorders often coexist, or are comorbid, with other mental and somatic disorders. Anxiety is commonly comorbid with major depression. About one-half of those with a primary diagnosis of major depression also have an anxiety disorder (Barbee, 1998; Regier et al., 1998). The comorbidity of anxiety and depression is so pronounced that it has led to theories of similar etiologies, which are discussed below. Substance use disorders are found in 24 to 40 percent of individuals with mood disorders in the United States (Merikangas et al., 1998). Without treatment, substance abuse worsens the course of mood disorders. Other common comorbidities include personality disorders (DSM-IV) and medical illness, especially chronic conditions such as hypertension and arthritis. People with depression have a high prevalence (65 to 71 percent) of any of eight common chronic medical conditions (Wells et al., 1991). The mood disorders also may alter or "scar" personality development. 244 Figure 4-1. Surgeon General's Call to Action to Prevent Suicide-1999 . Suicide is a serious public health problem . 31,000 suicides in 1996 o 500,000 people visit emergency rooms due to attempted suicide . Suicide rate declined from 12.1 per 100,000 in 1976 to 10.8 per `100,000 in 1996 o Rate in adolescents and young adults almost tripled since 1952 o Rate is 50 percent higher than the homicide rate I National Strategy for Suicide Prevention: AIM o Awareness: promote public awareness of suicide as.a public health problem o Intervention: enhance services and programs o Methodology: advance the science of suicide prevention . Risk factors o Male gender o Mental disorders, particularly depression and substance abuse o Prior suicide attempts . Unwillingness to seek help because of stigma o Barriers to accessing mental health treatment o Stressful life event/loss o Easy access to lethal methods such as guns . Protective factors o Effective and appropriate clinical care for underlying disorders o Easy access to care o Support from family, community, and health and mental health care staff Clinical Depression Versus Normal Sadness People have been plagued by disorders of mood for at least as long as they have been able to record their experiences. One of the earliest terms for depression, "melancholy," literally meaning "black bile," dates back to Hippocrates. Since antiquity, dysphoric states outside the range of normal sadness or grief have been recognized, but only within the past 40 years or so have researchers had the means to study the changes in cognition and brain functioning that are associated with severe depressive states. Adults and Mental Health At some time or another, virtually all adult human beings will experience a tragic or unexpected loss, romantic heartbreak, or a serious setback and times of profound sadness, grief, or distress. Indeed, something is awry if the usual expressions of sadness do not accompany such situations so common to the human ConditionAeath of a loved one, severe illness, prolonged disability, loss of employment or social status, or a child's difficulties, for example. What is now called major depressive disorder. however, differs both quantitatively and qualifativef~ from normal sadness dr grief. Normal states of dysphoria (a negative or aversive mood state) are typically less pervasive and generally run a more time- limited course. Moreover, some of the symptoms of severe depression, such as anhedonia (the inability to experience pleasure), hopelessness, and loss of mood reactivity (the ability to feel a mood uplift in response to something positive) only rarely accompany "normal" sadness. Suicidal thoughts and psychotic symptoms such as delusions or hallucinations virtually always signify a pathological state. Nevertheless, many other symptoms commonly associated with depression are experienced during times of stress or bereavement. Among them are sleep disturbances, changes in appetite, poor concentration, and ruminations on sad thoughts and feelings. When a person suffering such distress seeks help, the diagnostician's task is to differentiate the normal from the pathologic and, when appropriate, to recommend treatment. Assessment: Diagnosis and Syndrome Severity The criteria for diagnosing major depressive episode, dysthymia, mania, and cyclothymia are presented in Tables 4-2 through 4-5. Mania is an essential feature of bipolar disorder, which is marked by episodes of mania or mixed episodes of mania and depression. The reliability of the diagnostic criteria for major depressive disorder and bipolar disorder is impressive, with greater than 90 percent agreement reached by independent evaluators (DSM-IV). 245 Mental Health: A Report of the Surgeon General Major Depressive Disorder Major depressive disorder features one or more major depressive episodes (see Table 4-2), each of which lasts at least 2 weeks (DSM-IV). Since these episodes are also characteristic of bipolar disorder, the term "major6 depression" refers to both major depressive disorder and the depression of bipolar disorder. The cardinal symptoms of major depressive disorder are depressed mood and loss of interest or pleasure. Other symptoms vary enormously. For example, insomnia and weight loss are considered to be classic signs, even though many depressed patients gain weight and sleep excessively. Such heterogeneity is partly dealt with by the use of diagnostic subtypes (or course modifiers) with differing presentations and prevalence. For example, a more severe depressive syndrome characterized by a constellation of classical signs and symptoms, called melancholia, is more common among older than among younger people, as are depressions characterized by psychotic features (i.e., delusions and hallucinations) (DSM-IV). In fact, the presentation of psychotic features without concomitant melancholia should always raise suspicion about the accuracy of the diagnosis (vis-8-vis schizophrenia or a related psychotic disorder). The so- called reversed vegetative symptoms (oversleeping, overeating, and weight gain) may be more prevalent in women than men (Nemeroff, 1992). Anxiety symptoms such as panic attacks, phobias, and obsessions also are not uncommon. When untreated, a major depressive episode may last, on average, about 9 months. Eighty to 90 percent of individuals will remit within 2 years of the first episode (Kapur & Mann, 1992). Thereafter, at least 50 percent of depressions will recur, and after three or more episodes the odds of recurrence within 3 years increases to 70 to 80 percent if the patient has not had preventive treatment (Thase & Sullivan, 1995). Thus, for many, an initial episode of major depression will evolve over time into the more recurrent illness 6 The adjective "major" before the word "depression" denotes the number of symptoins required for the diagnosis, as distinct, From a proposed new category of "minor depression," which requires fewer symptoms (see Chapter 5). sometimes referred to as unipolar major depression (Thase & Sullivan, 1995). Each new episode also confers new risks of chronicity, disability, and suicide. Dysthymia Dysthymia is a chronic form of depression. Its early onset and unrelenting, "smoldering" course are among the features that distinguish it from major depressive disorder (DSM-IV). Dysthymia becomes so intertwined with a person's self-concept or personality that the individual may be misidentified as "neurotic" (resulting from unresolved early conflicts expressed through unconscious personality defenses ,or characterologic disorders) (Akiskal, 1985). Indeed, the onset of dysthymia in childhood or adolescence undoubtedly affects personality development and coping styles, particularly prompting passive, avoidant, and dependent "traits." To avoid the pejorative connotations associated with the terms "neurotic" and "characterologic," the term "dysthymia" is used in DSM-IV as a descriptive, or atheoretical, diagnosis for a chronic form of depression (see Table 4-3) (DSM-IV). Affecting about 2 percent of the adult population in 1 year, dysthymia is defined by its subsyndromal nature (i.e., fewer than the five persistent symptoms required to diagnose a major depressive episode) and a protracted duration of at least 2 years for adults and 1 year for children. Like other early-onset disorders, dysthymic disorder is associated with higher rates of comorbid substance abuse. People with dysthymia also are susceptible to major depression. When this occurs, their illness is sometimes referred to as "double depression," that is, the combination of dysthymia and major depression (Keller & Shapiro, 1982). Unlike the superimposed major depressive episode, however, the underlying dysthymia seldom remits spontaneously. Women are twice as likely to be diagnosed with dysthymia as men (Robins & Regier, 1991). Bipolar Disorder Bipolar disorder is a recurrent mood disorder featuring one or more episodes of mania or mixed episodes of mania and depression ( DSM-IV; Goodwin & Jamison, 246 Adults and Mental Health Table 4-2. DSM-IV criteria for maior dewessive episode I 4. B. C. D. E. Five (or more) of the following symptoms have been present during the same 2.week period and represent a change from previous functioning; at least one of the symptoms is either (1) depressed mood or (2) loss of interest or pleasure. Note: Do not include symptoms that are clearly due to a general medical condition, or mood-incongruent delusions or hallucinations. (1) (2) (3) (4) (5) (6) (7) (8) (9) depressed mood most of the day, nearly every day, as indicated by either subjective report (e.g., feels sad'or empty) or observation made by others (e.g., appears tearful). Note: In children and adolescents, can be irritable mood. markedly diminished interest or pleasure in all, or almost all, activities most of the day, nearly every day (as indicated by either subjective account or observation made by others). significant weight loss when not dieting or weight gain (e.g., a change of more than 5% of body weight in a month), or decrease or increase in appetite nearly every day. Note: In children, consider failure to make expected weight gains. . insomnia or hypersomnia nearly every day. psychomotor agitation or retardation nearly every day (observable by others, not merely subjective feelings or restlessness or being slowed down). fatigue or loss of energy nearly every day. feelings of worthlessness or excessive or inappropriate guilt (which may be delusional) nearly every day (not merely self-reproach or guilt about being sick). diminished ability to think or concentrate, or indecisiveness, nearly every day (either subjective account or as observed by others). recurrent thoughts of death (not just fear of dying), recurrent suicidal ideation without a specific plan, or a suicide attempt or a specific plan for committing suicide. The symptoms do not meet criteria for a mixed episode. The symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of functioning. The symptoms are not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication) or a general medical condition (e.g.`, hypothyroidism). The symptoms are not better accounted for by bereavement, i.e., after the loss of a loved one; the symptoms persist for longer than 2 months or are characterized by marked functional impairment, morbid preoccupation with worthlessness, suicidal ideation, psychotic symptoms, or psychomotor retardation. 247 Mental Health: A Report of the Surgeon General Ta E _ J. D. E. F. G. H. lble 4-3. DSM-IV diagnostic criteria for Dysthymic Disorder Depressed mood for most of the day, for more days than not, as indicated either by subjective account or observation by others, for at least 2 years. Note: In children and adolescents, mood can be irritable and duration must be at least 1 year. Presence, while depressed, of two (or more) of the following: (1) poor appetite or overeating (2) insomnia or hypersomnia (3) low energy or fatigue (4) low self-esteem (5) poor concentration or difficulty making decisions (6) feelings of hopelessness During the 2-year period (1 year for children or adolescents) of the disturbance, the person has never been without the symptoms in Criteria A and 6 for more than 2 months at a time. . No major depressive episode has been present during the first 2 years of the disturbance (1 year for children and adolescents); i.e.! the disturbance is not better accounted for by chronic major depressive disorder, or major depressive disorder, in partial remission. Note: There may have been a previous major depressive episode provided there was a full remission (no significant signs or symptoms for 2 months) before development of the dysthymic disorder. In addition, after the initial 2 years (1 year in children or adolescents) of dysthymic disorder, there may be superimposed episodes of major depressive disorder, in which case both diagnoses may be given when the criteria are met for a major depressive episode. There has never been a manic episode, a mixed episode, or a hypomanic episode, and criteria have never been met for cyclothymic disorder. The disturbance does not occur exclusively during the course of a chronic psychotic disorder, such as schizophrenia or delusional disorder. The symptoms are not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication) or a general medical condition (e.g., hypothyroidism). The symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of functioning. 1 248 1990). Bipolar disorder' is distinct from major depressive disorder by virtue of a history of manic or hypomanic (milder and not psychotic) episodes. Other differences concern the nature of depression in bipolar disorder. Its depressive episodes are typically associated with an earlier age at onset, a greater likelihood of reversed vegetative symptoms, more frequent episodes or recurrences, and a higher familial prevalence (DSM-IV; Goodwin & Jamison, 1990). Another noteworthy difference between bipolar and nonbipolar groups is the differential therapeutic effect of lithium salts, which are more helpful for bipolar disorder (Goodwin & Jamison, 1990). Mania is derived from a French word that literally means crazed or frenzied. The mood disturbance can range from pure euphoria or elation to irritability to a labile admixture that also includes dysphoria (Table 4-4). Thought content is usually- grandiose but also can be paranoid. Grandiosity usually takes the form both of overvalued ideas (e.g., "My book is the best one ever written") and of frank delusions (e.g., "I have radio transmitters implanted in my head and the Martians are monitoring my thoughts.") Auditory and visual hallucinations complicate more severe episodes. Speed of thought increases, and ideas typically race through the manic person's consciousness. Nevertheless, distractibility and poor concentration commonly impair implementation. Judgment also can be severely compromised; spending sprees, offensive or disinhibited behavior, and promiscuity or other objectively reckless behaviors are commonplace. Subjective energy, libido, and activity typically increase but a perceived reduced need for sleep can sap physical reserves. Sleep deprivation also can exacerbate cognitive difficulties and contribute to development of catatonia or a florid, confusional state known as delirious mania. If the manic patient is delirious, paranoid, or catatonic, the behavior is difficult to distinguish from that of a schizophrenic patient. Clinicians are prone to misdiagnose mania as schizophrenia in African Americans (Bell & Mehta, ' Bipolar disorder is also known as bipolar affective disorder and manic depression. Adults and Mental Health 198 1). Most people with bipolar disorder have a history of remission and at least satisfactory functioning before onset of the index episode of illness. In DSM-IV, bipolar depressions are divided into type I (prior mania) and type II (prior hypomanic episodes only). About 1.1 .percent of the adult population suffers from the type I form, and 0.6 percent from the type II form (Goodwin & Jar&on, 1990: Kessler et al., 1994) (Table 4-5). Episodes of mania occur, on average, every 2 to 4 years, although accelerated mood cycles can occur annually or even more frequently. The type I form of bipolar disorder is about equally common in men and women, unlike major depressive disorder, which is more common in women. Hypomania, as suggested above, is the sub- syndromal counterpart of mania (DSM-IV; Goodwin & Jamison, 1990). By definition, an episode of hypomania is never psychotic nor are hypomanic episodes associated with marked impairments in judgment or performance. In fact, some people with bipolar disorder long for the productive energy and heightened creativity of the hypomanic phase. Hypomania can be a transitional state (i.e., early in an episode of mania), although at least 50 percent of those who have hypomanic episodes never become manic (Goodwin & Jamison, 1990). Whereas a majority have a history of major depressive episodes (bipolar type II disorder), others become hypomanic only during antidepressant treatment (Goodwin & Jamison, 1990). Despite the relatively mild nature of hypomania, the prognosis for patients with bipolar type II disorder is poorer than that for recurrent (unipolar) major depression, and there is some evidence that the risk of rapid cycling (four or more episodes each year) is greater than with bipolar type I (Coryell et al., 1992). Women are at higher risk for rapid cycling bipolar disorder than men (Cot-yell et al., 1992). Women with bipolar disorder are also at increased risk for an episode during pregnancy and the months following childbirth (Blehar et al., 1998). 249 Mental Health: A Report of the Surgeon General Ta lble 4-4. DSM-IV criteria for manic episode 4. A distinct period of abnormally and persistently elevated, expansive, or irritable mood, lasting at least 1 week (or any duration if hospitalization is necessary). 3. During the period of mood disturbance, three (or more) of the following symptoms have persisted (four if the mood is only irritable) and have been present to a significant degree: (1) inflated self-esteem or grandiosity (2) decreased need for sleep (e.g., feels rested after only 3 hours of sleep) (3) more talkative than usual or pressure to keep talking (4) flight of ideas or subjective experience that thoughts are racing (5) distractibility (i.e., attention too easily drawn to unimpoitant or irrelevant external stimuli) (6) increase in goal-directed activity (either socially, at work or school, or sexually) or psyctiomotor agitation (7) excessive involvement in pleasurable activities that have a high potential for painful consequences (e.g., engaging in unrestrained buying sprees, sexual indiscretions, or foolish business investments) I C. The symptoms do not meet criteria for a mixed episode. D. The mood disturbance is sufficiently severe to cause marked impairment in occupational functioning or in USUal social activities or relationships with others, or to necessitate hospitalization to prevent harm to self or others, or there are psychotic features. E. The symptoms are not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication, or other treatment) or general medical condition (e.g., hyperthyroidism). Note: Manic-like episodes that are clearly caused by somatic antidepressant treatment (e.g., medication, electroconvulsive therapy, light therapy) should not count toward a diagnosis of bipolar I disorder. able 4-5. DSM-IV diagnostic criteria for Cyclothymic Disorder 4. 3. cl. D. E. F. For at least 2 years, the presence of numerous periods with hypomanic symptoms and numerous periods with depressive symptoms that do not meet criteria for a major depressive episode. Note: In children and adolescents, the duration must be at least 1 year. During the above 2-year period (1 year in children and adolescents), the person has not been without the symptoms in Criterion A for more than 2 months at a time. No major depressive episode, manic episode, or mixed episode has been present during the first 2 years of the disturbance. Note: After the initial 2 years (1 year in children and adolescents) of cyclothymic disorder, there may be superimposed manic or mixed episodes (in which case both bipolar I disorder and cyclothymic disorder may be diagnosed) or major depressive episodes (in which case both bipolar II disorder and cyclothymic disorder may be diagnosed). The symptoms in Criterion A are not better accounted for by schizoaffective disorder and are not superimposed on schizophrenia, schizophreniform disorder, delusional disorder, or psychotic disorder not otherwise specified. The symptoms are not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication) or a general medical condition (e.g., hyperthyroidism). The symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of functioning. ? 250 cydothymia Cyclothymia is marked by manic and depressive states, yet neither are of sufficient intensity nor duration to merit a diagnosis of bipolar disorder or major depressive disorder. The diagnosis of cyclothymia is appropriate if there is a history of hypomania, but no prior episodes of mania or major depression (Table 4- 5). Longitudinal follo%up studies indicate that the risk of bipolar disorder developing in patients with cyclothymia is about 33 percent; although 33 times greater than that for the general population, this rate of risk still is too low to justify viewing cyclothymia as merely an early manifestation of bipolar type I disorder (Howland & Thase, 1993). Differential Diagnosis Mood disorders are sometimes caused by general medical conditions or medications. Classic examples include the depressive syndromes associated with dominant hemispheric strokes, hypothyroidism, Cushing's disease, and pancreatic cancer (DSM-IV). Among medications associated with depression, antihypertensives and oral contraceptives are the most frequent examples. Transient depressive syndromes are also common during withdrawal from alcohol and various other drugs of abuse. Mania is not uncommon during high-dose systemic therapy with glucocorticoids and has been associated with intoxication by stimulant and sympathomimetic drugs and with central nervous system (CNS) lupus, CNS human immunodeficiency viral (HIV) infections, and nondominant hemispheric strokes or tumors. Together, mood disorders due to known physiological or medical causes may account for as many as 5 to 15 percent of all treated cases (Quitkin et al., 1993b). They often go unrecognized until after standard therapies have failed. A challenge to diagnosticians is to balance their search for relatively uncommon disorders with their sensitivity to aspects of the medical history or review of symptoms that might have etiologic significance. For example, the onset of a depressive episode a few weeks or months after the patient has begun taking a new blood-pressure medication should raise the physician's index of suspicion. Ultimately, occult or covert medical Adults and Mental Health illnesses must always be considered when an apparently clear-cut case of a mood disorder is refractory to standard treatments (Depression Guideline Panel, 1993). Cultural influences on the manifestation and diagnosis of depression are also important for the diagnostician to identify (DSM-IV). As discussed in Chapter 2, somatization is especially prevalent in individuals from ethnic minority backgrounds (Lu et al., 1995). Somatization is the expression of mental distress in terms of physical suffering. Etiology of Mood Disorders The etiology of depression, the mood disorder most frequently studied, is far from ideally understood. Many cases of depression are triggered by stressful life events, yet not everyone becomes depressed under such circumstances. The intensity and duration of these events, as well as each individual's genetic endowment, coping skills and reaction, and social support network contribute to the likelihood of depression. That is why depression and many other mental disorders are broadly described as the product of a complex interaction between biological and psychosocial factors (see Chapter 2). The relative importance of biological and psychosocial factors may vary across individuals and across different types of depression. This section of the chapter describes the biological, genetic, and psychosocial factors-such as cognition, personality, and gender-that correlate with, or predispose to, depression. The discussion of genetic factors also incorporates the latest findings about bipolar disorder. Genes are implicated even more strongly in bipolar disorder than they are in major depression, galvanizing a worldwide search to identify chromosomal regions where genes may be located and ultimately to pinpoint the genes themselves (NIMH, 1998). Bio/ogic Factors in Depression Much of the scientific effort expended over the past 40 years on the study of depression has been devoted to the search for biologic alterations in brain function. From the beginning, it has been recognized that the clinical heterogeneity of depression disorders may 251 Mental Health: A Report of the Surgeon General preclude the possibility of finding a single defect. Researchers have detected abnormal concentrations of many neurotransmitters and their metabolites in urine, plasma, and cerebrospinal fluid in subgroups of patients (Thase & Howland, 1995); dysregulation of the HPA axis (Thase & Howland, 1995); elevated levels of corticotropin-releasing factor (Nemeroff, 1992, 1998; Mitchell, 1998); and, most recently, abnormalities in second messenger systems and neuroimaging (Drevets, 1998; Rush et al., 1998, Steffens & Krishnan, 1998). Much current research focuses on how the biological abnormaliries interrelate, how they correlate with behavioral and emotional patterns that seem to distinguish one subcategory of major depression from another, and how they respond to diverse forms of therapy. In the search for biological changes with depression, it must be understood that a biological abnormality reliably associated with depression may not actually be a causal factor. For example, a biologic alteration could be a consequence of sleep deprivation or weight loss. Any biological abnomaEity found in conjunction with any mental disorder may be a cause, a correlate, or a consequence, as discussed in Chapter 2. What drives research is the determination to find which of the biological abnormalities in depression are true causes, especially ones that might be detectable and treatable before the onset of clinical symptoms. Monoamine Hypothesis For many years the prevailing hypothesis was that depression was caused by an absolute or relative deficiency of monoamine* transmitters in the brain. This line of research was bolstered by the discovery many years ago that reserpine, a medication for hypertension, inadvertently caused depression. It did so by depleting the brain of both serotonin and the three principal catecholamines (dopamine, norepinephrine, and epinephrine). Such findings led to the "catecholamine hypothesis" and the "indoleamine (i.e., ' Monoamine neurotransmitters are a chemical class that includes catecholamines (norepinephrine, epinephrine, dopa- mine) and indoleamines (serotonin). serotonin) hypothesis," which in due course led to an integrated "monoamine hypothesis" (Thase & Howland, 1995). After more than 30 years of research, however, the monoamine hypothesis has been found insufficient to explain the complex etiology of depression. One problem is that many other neurotransmitter systems are altered in depression, including GABA and acetylcholine (Rush et al., 1998). Another problem is that improvement of monoamine neurotransmission with medications and lifting of the clinical signs of depression do not prove that depression actually is caused by defective monoamine neurotransmission. For example, diuretic medications do not specifically correct the physiological defect underlying congestive heart failure, but they do treat its symptoms. Neither impairment of monoamine synthesis, nor excessive degradation of monoamines, is consistently present in association with depression; monoamine precursors do not have consistent antidepressant effects, and a definite temporal lag exists between the quickelevation in monoamine levels and the symptom relief that does not emerge until weeks later (Duman et al., 1997). To account for these discrepancies, one new model of depression proposes that depression results from reductions in neurotrophic factors that are necessary for the survival and function of particular neurons, especially those found in the hippocampus (Duman et al., 1997). Despite the problems with the hypothesis that monoamine depletion is the primary cause of depression, monoamine impairment is certainly one of the manifestations, or correlates, of depression. Therefore, the monoamine hypothesis remains important for treatment purposes. Many currently available pharmacotherapies that relieve depression or cause mania, or both, enhance monoamine activity. One of the foremost classes of drugs for depression, SSRIs, for example, boost the level of serotonin in the brain. Evolving Views of Depression An important shortcoming of the monoamine hypothesis was its inattention to the psychosocial risk factors that influence the onset and persistence of 252 depressive episodes. The nature and interpretation of, and the response to, stress clearly have important causal roles in depression. The following discussion illustrates ongoing work aimed at understanding the pathophysiology of depression. While incomplete, it offers a coherent integration of the biological, psychological, and social factors that have long been associated clinically with this disorder. Many decades ago, Hans Selye demonstrated the damaging effects of chronic stress on the HPA axis, the gastrointestinal tract, and the immune system of rats: adrenal hypertrophy, gastric ulceration, and involution of the thymus and lymph nodes (Selye, 1956). Since that time, researchers have provided ample evidence that brain function, and perhaps even anatomic structure, can be influenced by stress, interpretation of stress, and learning (Weiss, 1991; Sapolsky, 1996; McEwen, 1998). Much current research has been directed at stress, the HPA axis, and CRH in the genesis of depression. Depression can be the outcome of severe and prolonged stress (Brownet al., 1994; Franket al., 1994; Ingram et al., 1998). The acute stress response is characterized by heightened arousal-the fight-or-flight response -that entails mobilization of the sympathetic nervous system and the HPA axis (see Etiology of Anxiety). Many aspects of the acute stress response are exaggerated, persistent, or dysregulated in depression (Thase & Howland, 1995). Increased activity in the HPA axis in depression is viewed as the "most venerable finding in all of biological psychiatry" (Nemeroff, 1998). Increased activity of the HPA axis, however, may be secondary to more primary causes, as was the problem with the monoamine hypothesis of depression. For this reason, much attention has been focused on CRH, which is hypersecreted in depression (Nemeroff, 1992, 1998). CRH is the neuropeptide that is released by the hypothalamus to activate the pituitary in the acute stress response. Yet there are many other sources of CRH in the brain. CRH injections into the brain of laboratory animals produce the signs and symptoms found in depressed Patients, including decreased appetite and weight loss, decreased sexual behavior and sleep, and other changes (Sullivan et al., 1998). Furthermore, CRH is found in higher concentrations in the cerebrospinal fluid of depressed patients (Nemeroff, 1998). In autopsy studies of depressed patients, CRH gene expression is elevated, and there are greater numbers of hypothalamic neurons that express CRH (Nemeroff, 1998). These findings have ignited research to uncover how CRH expression in the hypothalamus is regulated, especially by other brain centers such as the hippocampus (Mitchell, 1998). The hippocampus exerts control over the HPA axis through feedbackinhibit,ion (Jacobson & Sapolsky, 1991). Shedding light on the regulation of CRH is expected to hold dividends for understanding both anxiety and depression. Anxiev and Depression Anxiety and depression frequently coexist, so much so that patients with combinations of anxiety and depression are the rule rather than the exception (Barbee, 1998). And many of the medications used to treat either one are often used to treat the other. Why are anxiety and depression so interrelated? 253 Clues to answering this question are expected to come from similarities in antecedents, correlates, and consequences of each condition. Certainly, stressful events are frequent, although not universal, antecedents. Overlapping biochemical correlates are found, most notably, an elevation in CRH (Arborelius et al., 1999). Interestingly, one new line of research finds that long-term consequences of anxiety and depression are evident at the same anatomical site-the hippocampus. Human imaging studies of the hippocampus revealed it to have smaller volume in patients with post-traumatic stress disorder (McEwen, 1998) and in patients with recurrent depression (Sheline, 1996). In the latter study, the degree of volume reduction was correlated with the duration of major depression. In both conditions, excess glucocorticoid exposure was thought to be the culprit in inducing the atrophy of hippocampal neurons. But the complete chain of events leading up to and following the hippocampal damage is not Yet known. Adults and Mental Health Mental Health: A Report of the Surgeon General Psychosocial and Genetic Factors in Depression If stressful events are the proximate causes of most cases of depression, then why is it that not all people become depressed in the face of stressful events? The answer appears to be that social, psychological, and genetic factors act together to predispose to, or protect against, depression. This section first discusses stressful life events, followed by a discussion of the factors that shape our responses to them. Stressful Life Events Adult life can be rife with stressful events, as noted earlier, and although not all people with depression can point to some precipitating event, many episodes of depression are associated with some sort of acute or chronic adversity (Brown et al., 1994; Frank et al., 1994; Ingram et al., 1998). The death of a loved one is viewed as one of the most powerful life stressors. The grief that ensues is a universal experience, Common symptoms associated with bereavement include crying spells, appetite and weight loss, and insomnia. Grief, in fact, has such emotional impact that the diagnosis of depressive disorder should not be made unless there are definite complications such as incapacity, psychosis, or suicidal thoughts. The compelling impact of past parental neglect, physical and sexual abuse, and other forms of maltreatment on both adult emotional well-being and brain function is now firmly established for depression. Early disruption of attachment bonds can lead to enduring problems in developing and maintaining interpersonal relationships and problems with depression and anxiety. Research in animals bears this out as well. In both rodents and primates, maternal deprivation stresses young animals, and a pattern of repeated, severe, early trauma from maternal deprivation may predispose an animal to a lifetime of overreactivity to stress (Plotsky et al., 1995). Conversely, early experience with mild, nontraumatic stressors (such as gentle handling) may help to protect or "immunize" animals against more pathologic responses to subsequent severe stress. Cognitive Factors According to cognitive theories of depression, how individuals view and interpret stressful events contributes to whether or not they become depressed. One prominent theory of depression stems from studies of learned helplessness in animals, The theory posits that depression arises from a cognitive state of helplessness and entrapment (Seligman, 1991). The theory was predicated on experiments in which animals were trained in an enclosure in which shocks were unavoidable and inescapable, regardless of avoidance measures that animals attempted. When they later were placed in enclosures in which evasive action could have succeeded, the animals were inactive, immobile, and unable to learn avoidance maneuvers. The earlier experience engendered a behavioral state of helplessness, one in which actions were seen as ineffectual. In humans there is now ample evidence that the impact of a stressor is moderated by the personal meaning of the event or situation. In other words, the critical factor is the person's interpretation of the stressor's potential impact. Thus, an event interpreted as a threat or danger elicits a nonspecific stress response, and an event interpreted as a loss (of either an attachment bond or a sense of competence) elicits more grieflike depressive responses. Heightened vulnerability to depression is linked to a constellation of cognitive patterns that predispose to distorted interpretations of a stressful event (Ingram et al., 1998). For example, a romantic breakup will trigger a much stronger emotional response if the affected person believes, "I am incomplete and empty without her love," or "I will never find another who makes me feel the way he does." The cognitive patterns associated with distorted interpretation of stress include relatively harsh or rigid beliefs or attitudes about the importance of romantic love or achievement (again, the centrality of love and work) as well as the tendency to attribute three specific qualities to adverse events: (1) global impact-"This event will have a big effect on me"; (2) internality-"1 should have done something to prevent this," or "This is my fault"; and (3) irreversibility-"I'll never be able to recover from this." 254 According to a recent model of cognitive vulner- ability to depression, negative cognitions by themselves are not sufficient to engender depression. This model postulates, on the basis of previously gathered empirical evidence, that interactions between negative cog&ions and mildly depressed mood are important in the etiology and recurrences of depression. Patterns or styles of thinking stem from prior negative experiences. When they are activated by adverse life events and a mildly depressed mood, a downward spiral ensues, leading to depression (Ingram et al., 1998). Temperament and Personality Responses to life events also can be linked' to personality (Hirschfeld & Shea, 1992). Personality may be understood in terms of one's attitudes and beliefs as well as more enduring neurobehavioral predispositions referred to as temperaments. The study of personality and temperament is gaining momentum. Neuroticism (a temperament discussed earlier in this chapter) predisposes to anxiety and depression (Clark et al., 1994). Having an easy-going temperament, on the other hand, protects against depression (IOM, 1994). Further, those with severe personality disorder are particularly likely to have a history of early adversity or maltreatment (Browne 8z Finkelhor, 1986). Temperaments are not destiny, however. Parental influences and individual life experiences may determine whether a shy child remains vulnerable or becomes a healthy, albeit somewhat reserved, adult. In adults, several constellations of personality traits are associated with mood disorders: avoidance, dependence, and traits such as reactivity and impulsivity (Hirschfeld & Shea, 1992). People who have such personality traits not only cope less effectively with stressors but also tend to provoke or elicit adversity. A personality disorder or temperamental disturbance may mediate the relationship between stress and depression. Gender Major depressive disorder and dysthymia are more prevalent among women than men, as noted earlier. This difference appears in different cultures throughout 255 Keys to understanding the sex-related difference in rates in the United States may be found in two types of epidemiologic findings: (1) there are no sex-related differences in rates of bipolar disorder (type I) (NJMH, 1998) and, (2) within the agrarian culture of the Old Order Amish of Lancaster, Pennsylvania, the rate of major depressive disorder is b&h low (i.e., comparable to that of bipolar disorder)' and equivalent for men and women (Egeland et al., 1983). Something about the environment thus appears to interact with a woman's biology to cause a disproportionate incidence of depressive episodes among women (Blumenthal, 1994a). Research conducted in working-class neighborhoods suggests that the combination of life stress and inadequate social support contributes to women's greater susceptibility to depressive symptoms (Brown et al., 1994). Because women tend to use more ruminative ways of coping (e.g., thinking and talking about a problem, rather than seeking out a distracting activity) and, on average, have less economic power, they may be more likely to perceive their problems as less solvable. That perception increases the likelihood of feeling helpless or entrapped by one's problem. Subtle sex-related differences in hemispheric processing of emotional material may further predispose women to experience emotional stressors more intensely (Baxter et al., 1987). Women are also more likely than men to have experienced past sexual abuse: as noted earlier in this chapter, physical and sexual abuse is strongly associated with the subsequent development of major depressive disorder. Women's greater vulnerability to depression may be amplified by endocrine and reproductive cycling, as well as by a 9 A small, albeit noteworthy, sex-related difference is Seen in the higher incidence of rapid-cycling bipolar disorder in women (cited in Blumenthal, 1994). Adults and Mental Health the world (Weissman et al., 1993). Understanding the gender-related difference is complex and likely related to the interaction of biological and psychosocial factors (Blumenthal, 1994a), including differences in stressful life events as well as to personality (Nolen-Hoeksema et al., in press). Mental Health: A Report of the Surgeon General greater susceptibility to hypothyroidism (Thase & Howland, 1995). Menopause, on the other hand, has little bearing on gender differences in depression. Contrary to popular beliefs, menopause does not appear to be associated with increased rates of depression in women (Pearlstein et al., 1997). Untreated mental health problems are likely to worsen at menopause, but menopause by itself is not a risk factor for depression (Pearce et al., 1995; Thacker, 1997). The increased risk for depression prenatally or after childbirth suggests a role for hormonal influences, although evidence also exists for the role of stressful life events. In short, psychosocial and environmental factors likely interact with biological factors to account for greater susceptibility to depression among women. Poor young women (white, black, and Hispanic) appear to be at the greatest risk for depression compared with all other population groups (Miranda & Green, 1999). They have disproportionately higher rates of past exposure to trauma, including rape, sexual abuse, crime victimization, and physical abuse; poorer support systems; and greater barriers to treatment, including financial hardship and lack of insurance (Miranda & Green, 1999). Many of the same problems apply to single mothers, whose risk of depression is double that of married mothers (Brown & Moran, 1997). The interaction between stressful life events, individual experiences, and genetic factors also plays a role in the etiology of depression in women. Some research suggests that genetic factors, which are discussed below, may alter women's sensitivity to the depression-inducing effect of stressful life events (Kendler et al., 1995). A recent report of depression in a sample of 2,662 twins found genetic factors in depression to be stronger for women than men, for whom depression was only weakly familial. For both genders, individual environmental experiences played a large role in depression (Bierut et al., 1999). Genetic Factors in Depression and Bipolar Disorder Depression, and especially bipolar disorder, clearly tend to "run in families," and a definite association has been scientifically established (Tsuang & Faraone, 1990). Numerous investigators have documented that susceptibility to a depressive disorder is twofold to fourfold greater among the first-degree relatives of patients with mood disorder than among other people (Tsuang & Faraone, 1990). The risk among first-degree relatives of people with bipolar disorder is about six to eight times greater. Some evidence indicates that first- degree relatives of people with mood disorders are also more susceptible than other people to anxiety and substance abuse disorders (Tsuang & Faraone, 1990). Remarkable as those statistics may be, they do not by themselves prove a genetic connection. Inasmuch as first-degree relatives typically live in the same environment, share similar values and beliefs, and are subject to similar stressors, the vulnerability to depression could be due to nurture rather than nature. One method to distinguish environmental from genetic factors is to compare concordance rates among same- sex twins. At least in terms of simple genetic theory, a solely hereditary trait that appears in one member of a set of identical (monozygotic) twins also should always appear in the other twin, whereas the trait should appear only 50 percent of the time in same-sex fraternal (dizygotic) twins. The results of studies comparing the prevalence of depression among twins vary, depending on the specific mood disorder, the age of the study population, and the way the depression is defined. In all instances, however, the reported concordance for mood disorders is greater among monozygotic than among dizygotic twins, and often the proportion is 2 to 1 (Tsuang & Faraone, 1990). In Denmark, Bertelsen and colleagues (1977) found that among 69 monozygotic twins with bipolar illness, 46 co-twins also had bipolar disorder and 14 other co-twins had psychoses, affective personality disorders, or had died by suicide. In studies of monozygotic twins reared separately ("adopted away"), the results also revealed an increased risk of depression and bipolar disorder compared with controls (Mendlewicz & Rainer 1977; Wender et al., 1986). Within the major depressive disorder grouping, greater heritable risk has been associated with more severe, recurrent, or psychotic forms of mood disorders 256 (Tsuang & Faraone, 1990). Those at greater heritable risk also appear more vulnerable to stressful life events (Kendler et al., 1995). The availability of modem molecular genetic methods now allows the translation of clinical associations into identification of specific genes (McInnis, 1993; Baron, 1997). Evidence collected to date strongly sugge'sts that vulnerability to mood disorders may be associated with several genes distributed among various chromosomes. For bipolar disorder, numerous distinct chromosomal regions (called loci) show promise, yet the complex nature of inheritance and methodological problems have encumbered investigators (Baron, 1997). Heritability in some cases may be sex linked or vary depending on whether the affected parent is the father or mother of the individual being studied. The genetic process of anticipation (which has been associated with an expansion of trinucleotide repeats) may further alter the expression of illness across generations (McGinnis, 1993). Thus, the genetic complexities of the common depressive disorders ultimately may rival their clinical heterogeneity (Tsuang & Faraone, 1990). Based on a comprehensive review of the genetics literature, the National Institute of Mental Health Genetics Workgroup recently evaluated several mood disorders according to their readiness for large-scale genetics research initiatives. Bipolar disorder was rated in the highest category, meaning that the evidence was strong enough to justify large-scale molecular genetic studies. Depression, eating disorders, obsessive- compulsive disorder, and panic disorder were rated in the second highest category, which called for nonmolecular genetic and/or epidemiologic al studies to document further their estimated heritability (NIMH, 1998). Treatment of Mood Disorders 257 So much is known about the assortment of pharmacological and psychosocial treatments for mood disorders that the most salient problem is not with treatment, but rather with getting people into treatment. Surveys consistently document that a majority of individuals with depression receive no specific form of Ad& and Mental Health treatment (Katon et al., 199:. ?&row et al., 1993; Wells et al., 1994; Thase, 199~ _ Nearly 40 percent of people with bipolar disorder LY untreated in 1 year, according to the Epidemiologic Catchment Area survey (Regier et al., 1993). Undertrezz-Xnt of mood disorders stems from many factors, inL:ding societal stigma, financial barriers to treatmer.:. underrecognition by health care providers, and ;mderappreciation by consumers of the potential be~fits of treatment (e.g., Regier et al., 1988; Wells et ai.. i994; Hirschfeld et al., 1997). The symptoms of depression. such as feelings of worthlessness, excessive gui!t. :md lack of motivation, also deter consumers from kyting treatment; and members of racial and ethnic minor@ groups often encounter special barriers, as `i&cussed in Chapter 2. Mood disorders have i-rufoundly deleterious consequences on we&being: thi'ir toll On quality Of life and economic productivity Inatches that of heart disease and is greater than that ~jipeptic ulcer, arthritis, hypertension, or diabetes (Wells et al., 1989). Stages of Therapy The treatment of mood disordcn is complex because it involves several stages: acute. continuation, and maintenance stages. The stages apply to pharmacotherapy and psychosoCial therapy alike. Most patients pass through these stages to restore full functioning. Acute Phase Therapy Acute phase treatment with cithttr psychotherapy or pharmacotherapy covers the tinle period leading up to an initial treatment response. r-\ treatment response is defined by a significant reduction (i.e., > 50 percent) in symptom severity, such that the patient no longer meets syndromal criteria for the disorder (Frank et al., 1991b). The acute phase for medication typically requires 6 to 8 weeks (Depression Guideline Panel, 1993), during which patients are seen wee&' or biweekly for monitoring of symptoms, side effects, dosage adjustments, and support (FJwcettet al., 1987). Psychotherapies during the acute phase for depression typically consist of 6 to 20 w&l\' visits. Mental Health: A Report of the Surgeon General Outpatient Treatment. In outpatient clinical trials, about 50 to 70 percent of depressed patients who complete treatment respond to either antidepressants or psychotherapies (Depression Guideline Panel, 1993). An acute treatment response includes the effects of placebo expectancy, spontaneous remission, and active treatment. The magnitude of the active treatment effect may be estimated from randomized clinical trials by subtracting the placebo response rate from that of active medication. Overall, the active treatment effect for major depression typically ranges from 20 to 40 percent, after accounting for a placebo response rate of about 30 percent (Depression Guideline Panel, 1993). Although psychotherapy trials do not employ placebos in the form of an inert pil!, they do rely on comparisons of active treatment with psychological placebos (e.g., a form of therapy inappropriate for a given disorder), a comparison form of treatment, or wait list (i.e., no therapy). The figures cited above must be understood as rough averages. The efficacy of specific pharmacotherapies and psychotherapies is coveredlater in this section. Acute phase therapy is often compromised by patients leaving treatment. Attrition rates from clinical trials often are as high as 30 to 40 percent, and rates of nonadherence" are even higher (Depression Guideline Panel, 1993). Medication side effects are a factor, as are other factors such as inadequate psychoeducation (resulting in unrealistic expectations about treatment), ambivalence about seeing a therapist or taking medication, and practical roadblocks (e.g., the cost or accessibility of services). Another problem is clinician failure to monitor symptomatic response and to change treatments in a timely manner. Antidepressants should be changed if there is no clear effect within 4 to 6 weeks (Nierenberg et al., 1995; Quitkin et al., 1996). Similar data are not available for psychotherapies, but revisions to the treatment plan should be considered, including the addition of antidepressant medication, if there is no lo Nonadherence is defined as lack of adherence to prescribed activities such as keeping appointments, taking medication, and completing assignments. symptomatic improvement within 3 or 4 months (Depression Guideline Panel, 1993). Acute Inpatient Treatment. Hospitalization for acute treatment of depression is necessary for about 5 to 10 percent of major depressive episodes and for up to 50 percent of manic episodes. The principal reasons for hospitalization are overwhelming severity of symptoms and functional incapacity and suicidal or other life- threatening behavior. Hospital median lengths of stay now are about 5 to 7 days for depression and 9 to 14 days for mania. Such abbreviated stays have reduced costs but necessitate greater trans&onal or aftercare services. Few severely depressed or manic people are in remission after only 1 to 2 weeks of treatment. Electroconvulsive Therapy. As described above, first- line treatment for most people with depression today consists of antidepressant medication, psychotherapy, or the combination (Potter et al., 1991; Depression Guideline Panel, 1993). In situations where these options are not effective or too slow (for example, in a person with delusional depression and intense, unremitting suicidality) electroconvulsive therapy (ECT) may be considered. ECT, sometimes referred to as electroshock or shock treatment, was developed in the 1930s based on the mistaken belief that epilepsy (seizure disorder) and schizophrenia could not exist at the same time in an individual. Accumulated clinical experience-later confirmed in controlled clinical trials, which included the use of simulated or "sham" ECT as a control (Janicak et al., 1985)--determined ECT to be highly effective against severe depression, some acute psychotic states, and mania (Small et al., 1988). No controlled study has shown any other treatment to have superior efficacy to ECT in the treatment of depression (Janicak et al., 1985; Rudorfer et al., 1997). ECT has not been demonstrated to be effective in dysthymia, substance abuse, or anxiety or personality disorders. The foregoing conclusions, and many of those discussed below, are the products of review of extensive research conducted over several decades (Depression Guideline Panel, 1993; Rudorfer et al., 1997) as well as by an independent panel of 258 scientists, practitioners, and consumers (NIH & NIMH Consensus Conference, 1985). ECT consists of a series of brief generalized seizures induced by passing an electric current through the brain by means of two electrodes placed on the scalp. A typical course of ECT entails 6 to 12 treatments, administered at a rate of three times per week, on either an inpatient or outpatient basis. The exact mechanisms by which ECT exerts its therapeutic effect are not yet known. The production of an adequate, generalized seizure using the proper amount of electrical stimulation at each treatment session is required for therapeutic efficacy (Sackheim et al., 1993). With the development of effective medications for the treatment of major mental disorders a half-century ago, the need for ECT lessened but did not disappear. Prior to that time, ECT often had been administered for a variety of conditions for which it is not effective, and administered without anesthesia or neuromuscular blockade. The result was grand ma1 seizures that could produce injuries and even fractures. Despite the availability of a range of effective antidepressant medications and psychotherapies, as discussed above, ECT continues to be used (Rosenbach et al., 1997), occupying a narrower but important niche. It is generally reserved for the special circumstances where the usual first-line treatments are ineffective or cannot be taken, or where ECT is known to be particularly beneficial, such as depression or mania accompanied by psychosis or catatonia (NM & NIMH Consensus Conference, 1985; Depression Guideline Panel, 1993; Potter & Rudorfer, 1993). Examples of specific indications include depression unresponsive to multiple medication trials, or accompanied by a physical illness or pregnancy, which renders the use of a usually preferred antidepressant dangerous to the patient or to a developing fetus. Under such circumstances, carefully weighing risks and benefits, ECT may be the safest treatment option for severe depression. It should be administered under controlled conditions, with appropriate personnel (Rudorfer et al., 1997). Although the average 60 to 70 percent response rate seen with ECT is comparable to that obtained with Adults and Mental Health pharmacotherapy, there is evidence that the antidepressant effect of ECT occurs faster than that seen with medication, encouraging the use of ECT where depression is accompanied by potentially uncontrollable suicidal ideas and actions (Rudorfer et al., 1997). However, ECT does not exert a long-term protection against suicide. Indeed, it is now recognized that a single course of ECT should be regarded as a short-term treatment for an acute episode of illness. To sustain the response to ECT, continuation treatment, often in the form of antidepressant and/or mood stabilizer medication, must be instituted (Sackeim, 1994). Individuals who repeatedly relapse following ECT despite continuation medication may be candidates for maintenance ECT, delivered on an outpatient basis at a rate of one treatment weekly to as infrequently as monthly (Sackeim, 1994; Rudorfer et al., 1997). The major risks of ECT are those of brief general anesthesia, which was introduced along with muscle relaxation and oxygenation to protect against injury and to reduce patient anxiety. There are virtually no absolute health contraindications precluding its use where warranted (Potter & Rudorfer, 1993; Rudorfer et al., 1997). The most common adverse effects of this treatment are confusion and memory loss for events surrounding the period of ECT treatment. The confusion and disorientation seen upon awakening afterECT typically clear within an hour. More persistent memory problems are variable. Most typical with standard, bilateral electrode placement (one electrode on each side of the head) has been a pattern of loss of memories for the time of the ECT series and extending back an average of 6 months, combined with impairment with learning new information, which continues for perhaps 2 months following ECT (NM & NIMH Consensus Conference, 1985). Well-designed neuropsychological studies have consistently shown that by several months after completion of ECT, the ability to learn and remember are normal (Calev, 1994). Although most patients return to full functioning following successful ECT, the degree of post-treatment memory impairment and resulting impact on functioning are highly variable 259 Mental Health: A Report of the Surgeon General across individuals (NM & NIMH Consensus Conference, 1985; CMHS, 1998). While clearly the exception rather than the rule, no reliable data on the incidence of severe post-ECT memory impairment are available. Fears that ECT causes gross structural brain pathology have not been supported by decades of methodologically sound research in both humans and animals (NM & NIMH Consensus Conference, 1985; Devanand et al., 1994; Weiner & Krystal, 1994; Greenberg, 1997; CMHS, 1998). The decision to use ECT must be evaluated for each individual, weighing the potential benefits and known risks of all available and appropriate treatments in the context of informed consent (NM & NIMH Consensus Conference, 1985). Advances in treatment technique over the past generation have enabled a reduction of adverse cognitive effects of ECT (NIH & NIMH Consensus Conference, 1985; Rudorfer et al., 1997). Nearly all ECT devices deliver a lower current, brief-pulse electrical stimulation, rather than the original sine wave output; with a brief pulse electrical wave, a therapeutic seizure may be induced with as little as one-third the electrical power as with the older method, thereby reducing the potential for confusion and memory disturbance (Andrade et al., 1998). Placement of both stimulus electrodes on one side of the head ("unilateral" ECT), over the nondominant (generally right) cerebral hemisphere, results in delivery of the initial electrical stimulation away from the primary learning and memory centers. According to several controlled trials, unilateral ECT is associated with virtually no detectable, persistent memory loss (Home et al., 1985; NIH Consensus Conference, 1985; Rudorfer et al., 1997). However, most clinicians find unilateral ECT less potent and more slowly acting an intervention than conventional bilateral ECT, particularly in the most severe cases of depression or in mania. One approach that is sometimes used is to begin a trial of ECT with unilateral electrode placement and switch to bilateral treatment after about six treatments if there has been no response. Research has demonstrated that the relationship of electrical dose to clinical response differs depending on electrode placement: for bilateral ECT, as long as an adequate seizure is obtained, any additional dosage will merely add to the cognitive toxicity, whereas for unilateral electrode placement, a therapeutic effect will not be achieved unless the electrical stimulus is more than mininially above the seizure threshold (Sackeim et al., 1993). Even a moderately high electrical dosage in unilateral ECT still has fewer cognitive adverse effects than bilateral ECT. On the other hand, high-dose bilateral ECT may be unnecessarily risky and may be a preventable cause of severe memory impairment. Some types of medication, such as lithium, also add to confusion and cognitive impairment when given during a course of ECT and are best avoided. Medications that raise the seizure threshold and make it harder to obtain a therapeutic effect from ECT, including anticonvulsants and some minor tranquilizers, may also need to be tapered or discontinued. Informed consent is an integral part of the ECT process (NIH & NIMH Consensus Conference, 1985). The potential benefits and risks of this treatment, and of available alternative interventions, should be carefully reviewed and discussed with patients and, where appropriate, family or friends. Prospective candidates for ECT should be informed, for example, that its benefits are short-lived without active continuation treatment, and that there may be some risk of permanent severe memory loss after ECT. In most cases of depression, the benefit-to-risk ratio will favor the use of medication and/or psychotherapy as the preferred course of action (Depression Guideline Panel, 1993). Where medication has not succeeded, or is fraught with unusual risk, or where the potential benefits of ECT are great, such as in delusional depression, the balance of potential benefits to risks may tilt in favor of ECT. Active discussion with the treatment team, supplemented by the growing amount of printed and videotaped information packages for consumers, is necessary in the decisionmaking process, both prior to and throughout a course of ECT. Consent may be revoked at any time during a series of ECT sessions. Although many people have fears related to stories of forced ECT in the past, the use of this modality on an involuntary basis today is uncommon. Involuntary 260 ECT may not be initiated by a physician or family member without a judicial proceeding. In every state, the administration of ECT on an involuntary basis requires such a judicial proceeding at which patients may be represented by legal counsel. As a rule, such petitions are granted only where the prompt institution of ECT is regarded as potentially lifesaving, as in the case of a person who is in grave danger because of lack of food or fluid intake caused by Catalonia. Recent epidemiological surveys show that the modem use of ECT is generally limited to evidence-based indications (Hermann et al., 1999). Indeed, concern has been raised that in some settings, particularly in the public sector and outside major metropolitan areas, ECT may be underutilized due `to the wide variability in the availability of this treatment across the country (Hermann et al., 1995). Consequently, minority patients tend to be under-represented among those receiving ECT (Rudorfer et al., 1997). On balance, the evidence supports the conclusion that modem ECT is among those treatments effective for the treatment of select severe mental disorders, when used in accord with current standards of care, including appropriate informed consent. Continuation Phase Therapy Successful acute phase antidepressant pharmacotherapy or ECT should almost always be followed by at least 6 months of continued treatment (Prien & Kupfer, 1986; Depression Guideline Panel, 1993; Rudorfer et al., 1997). During this phase, known as the continuation phase, most patients are seen biweekly or monthly. The primary goal of continuation pharmacotherapy is to prevent relapse (i.e., an exacerbation of symptoms sufficient to meet syndromal criteria). Continuation pharmacotherapy reduces the risk of relapse from40-60 percent to lo-20 percent (Prien & Kupfer, 1986; Thase, 1993). Relapse despite continuation phmacotherapy might suggest either nonadherence (Myers & Branthwaithe, 1992) or loss of a placebo response (Quitkin et al., 1993a). A second goal of continuation pharmacotherapy is consolidation of a response into a complete remission and subsequent recovery (i.e., 6 months of sustained Adults and Mental Health remission). A remission is defined as a complete resolution of affective symptoms to a level shnilar to healthy people (Frank et al., 1991a). As residual symptoms are associated with increased relapse risk (Keller et al., 1992; Thase et al., 1992), recovery should be achieved before withdrawing antidepressant phar-macotherapy. Many psychotherapists similarly taper a successful course of treatment by scheduling several sessions (every other week or monthly) prior to termination. There is some evidence, albeit weak, that relapse is less common following successful treatment with one type of psychotherapy-cognitive-behavioral therapy-than with antidepressants (Kovacs et al., 198 1; Blackbum et al., 1986; Simons et al., 1986; Evans et al., 1992). If confirmed, this advantage may offset the greater short- term costs of psychotherapy. Maintenance Phase Therapies Maintenance pharmacotherapy is intended to prevent future recurrences of mood disorders (Kupfer, 1991; Thase, 1993; Prien & Kocsis, 1995). A recurrence is viewed as a new episode of illness, in contrast to relapse, which represents reactivation of the index episode (Frank et al., 1991a). Maintenance pharmacotherapy is typically recommended for individuals with a history of three or more depressive episodes, chronic depression, or bipolar disorder (Kupfer, 1991; Thase, 1993; Prien & Kocsis, 1995). Maintenance pharmacotherapy, which may extend for years, typically requires monthly or quarterly visits. Longer term, preventive psychotherapy to prevent recurrences has not been studied extensively. However, in one study of patients with highly recurrent depression, monthly sessions of interpersonal psychotherapy were significantly more effective than placebo but less effective than pharmacotherapy (Frank et al., 1991a). Specific Treatments for Episodes of Depression and Mania This section describes specific types of pharmaco- therapies and psychosocial therapies for episodes of depression and mania. Treatment generally targets 261 Mental Health: A Report of the Surgeon General symptom patterns rather than specific disorders. Differences in the treatment strategy for unipolar and bipolar depression are described where relevant. Treatment of Major Depressive Episodes Pharmacotherapies Antidepressant medications are effective across the full range of severity of major depressive episodes in major depressive disorder and bipolar disorder (American Psychiatric Association, 1993; Depression Guideline Panel, 1993; Frank et al., 1993). The degree of effectiveness, however, varies according to the intensity of the depressive episode. With mild depressive episodes, the overall response rate is about 70 percent, including a placebo rate of about 60 percent (Thase & Howland, 1995). With severe depressive episodes, the overall response rate is much lower, as is the placebo rate. For example, with psychotic depression, the overall response rate to any one drug is only about 20 to 40 percent (Spiker, 1985), including a placebo response rate of less than 10 percent (Spiker & Kupfer, 1988; Schatzberg & Rothschild, 1992). Psychotic depression is treated with either an antidepressant/antipsychotic combination gr ECT (Spiker, 1985; Schatzberg & Rothschild, 1992). There are four major classes of antidepressant medications. The tricyclic and heterocyclic antidepressants (TCAs and HCAs) are named for their chemical structure. The MAOIs and SSRIs are classified by their initial neurochemical effects. In general, MAOIs and SSRIs increase the level of a target neurotransmitter by two distinct mechanisms. But, as discussed below, these classes of medications have many other effects. They also have some differential effects depending on the race or ethnicity of the patient. The mode of action of antidepressants is complex and only partly understood. Put simply, most antidepressants are designed to heighten the level of a target neurotransmitter at the neuronal synapse. This can be accomplished by one or more of the following therapeutic actions: boosting the nemotransmitter's synthesis, blocking its degradation, preventing its reuptake from the synapse into the presynaptic neuron, or mimicking its binding to postsynaptic receptors. To make matters more complicated, many antidepressant drugs affect more than one neurotransmitter. Explaining how any one drug alleviates depression probably entails multiple therapeutic actions, direct and indirect, on more than one neurotransrnitter system (Feighner, 1999). Selection of a particular antidepressant for a particular patient depends upon the patient's past treatment history, the likelihood of side effects, safety in overdose, and expense (Depression Guideline Panel, 1993). A vast majority of U.S. psychiatrists favor the SSRIs as "first-line" medications (Olfson & Klerman, 1993). These agents are viewed more favorably than the TCAs because of their ease of use, more manageable side effects, and safety in overdose (Kapur et al., 1992; Preskom & Burke, 1992). Perhaps the major drawback of the SSRIs is their expense: they are only available as name brands (until 2002 when they begin to come off patent). At minimum, SSRI therapy costs about $80 per month (Burke et al., 1994), and patients taking higher doses face proportionally greater costs. Four SSRIs have been approved by the FDA for treatment of depression: fluoxetine, sertraline, paroxetine, and citalopram. A fifth SSRI, fluvoxamine, is approved for treatment of obsessive-compulsive disorder, yet is used off-label for depression." There are few compelling reasons to pick one SSRI over another for treatment of uncomplicated major depression, because they are more similar than different (Aguglia et al., 1993; Schone & Ludwig, 1993; Tignol, 1993; Preskom, 1995). There are, however, several distinguishing pharmacokinetic differences between SSRIs, including elimination half-life (the time it takes for the plasma level of the drug to decrease 50 percent from steady-state), propensity for drug-drug interactions (e.g., via inhibition of hepatic enzymes), and antidepressant activity of metabolite(s) (DeVane, 1992). In general, SSRIs are more likely to be ' ' Technically, FDA approves drugs for a selected indication (a disorder in a certain population). However, once the drug is marketed, doctors are. at liberty to prescribe it for unapproved (off-label) indications. 262 metabolized more slowly by African Americans and Asians, resulting in higher blood levels (Lin et al., 1997). The SSRIs as a class of drugs have their own class- specific side effects, including nausea, diarrhea, headache, tremor, daytime sedation, failure to achieve orgasm, nervousness, .and insomnia. Attrition from acute phase therapy because of side effects is typically 10 to 20 percent (Preskorn & Burke, 1992). The incidence of treatment-related suicidal thoughts for the SSRIs is low and comparable to the rate observed for other antidepressants (Beasley et al., 1991; Fava 8z Rosenbaum, 1991), despite reports to the contrary (Breggin & Breggin, 1994). Some concern persists that the SSRIs are less effective than the TCAs for treatment of severe depressions, including melancholic and psychotic subtypes (Potter et al., 1991; Nelson, 1994). Yet there is no definitive answer (Danish University Anti- depressant Group, 1986, 1990; Pande & Sayler, 1993; Roose et al., 1994; Stuppaeck et al., 1994). Side effects and potential lethality in overdose are the major drawbacks of the TCAs. An overdose of as little as 7-day supply of a TCA can result in potentially fatal cardiac arrhythmias (Kapur et al., 1992). TCA treatment is typically initiated at lower dosages and titrated upward with careful attention to response and side effects. Doses for African Americans and Asians should be monitored more closely, because their slower metabolism of TCAs can lead to higher blood concentrations (Lin et al., 1997). Similarly, studies also suggest that there may be gender differences in drug metabolism and that plasma levels may change over the course of the menstrual cycle (Blumenthal, 1994b). In addition to the four major classes of anti- depressants are bupropion, which is discussed below, and three newer FDA-approved antidepressants that have mixed or compound synaptic effects. Venlafaxine, the first of these newer antidepressants, inhibits reuptake of both serotonin and, at higher doses, norepinephrine. In contrast to the TCAs, venlafaxine has somewhat milder side effects (Bolden-Watson & Richelson, 1993), which are like those of the SSRIs. 263 Nefazodone, the second newer antidepressant, is unique in terms of both .struc&re and neurochemical effects (Taylor et al., 1995). In contrast to the SSRIs, nefazodone improves sleep efficiency (An&age et al., 1994). Its side effect profile is comparable to the other newer antidepressants, but it has the advantage of a lower rate of sexual side effects (Preskom, 1995). The more recently FDA-approved antidepressant, mirta- zapine, blocks two types of serotonin receptors, the 5- HT, and 5-HT, receptors (Feighner, 1999). Mirtazapine is also a potent antihistamine and tends to be more sedating than most other newer antidepressants. Weight gain can be another troublesome side effect. Figure 4-2 presents summary findings on newer pharmacotherapies from a recent review of the treatment of depression by the Agency for Health Care Policy and Research (AHCPR, 1999). There have been few studies of gender differences in clinical response to treatments for depression. A recent report (Komstein et al., in press) found women with chronic depression to respond better to a SSRI than a tricyclic, yet the oppo- site for men. This effect was primarily in premeno- pausal women. The AHCPR report (1999) also noted that there were almost no data to address the efficacy of pharmacotherapies in post partum or pregnant women. Alternate Pharmacotherapies Regardless of the initial choice of pharmacotherapy, about 30 to 50 percent of patients do not respond to the initial medication. It has not been established fidy whether patients who respond poorly to one class of antidepressants should be switched automatically to an alternate class (Thase & Rush, 1997). Several studies Adults and Mental Health Venlafaxine also has a low risk of cardiotoxicity and, although experience is limited, it appears to be less toxic than the others in overdose. Venlafaxine has shown promise in treatment of severe (Guelfi et al., 1995) or refractory (Nierenberg et al., 1994) depres- sive states and is superior to fluoxetine in one inpatient study (Clerc et al., 1994). Venlafaxine also occasionally causes increased blood pressure, and this can be a particular concern at higher doses (Thase, 1998). Mental Health: A Report of the Surgeon General have examined the efficacy of the TCAs and SSRIs when used in sequence (Peselow et al., 1989; Beasley et al., 1990). Approximately 30 to 50 percent of those not responsive to one class will respond to the other (Thase & Rush, 1997). Among other types of antidepressants, the MAOIs and bupropion are important alternatives for SSRI and TCA nonresponders (Thase & Rush, 1995). These agents also may be relatively more effective than TCAs or SSRIs for treatment of depressions characterized by atypical or reversed vegetative symptoms (Goodnick & Extein, 1989; Quitkin et al., 1993b; Thase et al., 1995). Bupropion and the MAOIs also are good choices to treat bipolar depression (Himmelhoch et al., 1991; Thase et al., 1992; Sachs et al., 1994). Bupropion also has the advantage of a low rate of sexual side effects (Gardner & Johnston, 1985; Walker et al., 1993). Bupropion's efficacy and overall side effect profile might justify its first-line use for all types of depression (e.g., Kiev et al., 1994). Furthermore, bupropion has a novel neurochemical profile in terms of effects on dopamine and norepinephrine (Ascher et al., 1995). However, worries about an increased risk of seizures delayed bupropion's introduction to the U.S. market by more than 5 years (Davidson, 1989). Although clearly effective for a broad range of depressions, use of the MAOIs has been limited for decades by concerns that when taken with certain foods containing the chemical tyramine (for example, some aged cheeses and red wines); these medications may cause a potentially lethal hypertensive reaction (Thase et al., 1995). There has been continued interest in development of safer, selective and reversible MAOIs. Hypericum (St. John's Wart). The widespread publicity and use of the botanical product from the yellow- flowering Hypericum perforutum plant with or without medical supervision is well ahead of the science database supporting the effectiveness of this putative antidepressant. Controlled trials, mainly in Germany, have been positive in mild-to-moderate depression, with only mild gastrointestinal side effects reported (Linde et al., 1996). However, most of those studies were methodologically flawed, in areas including Figure 4-2. Treatment of depression-newer pharmacotherapies: Summary findings * Newer antidepressant drugs* are effective treatments for major depression and dysthymia. o They are efficacious in primary care and specialty mental health care settings: - Major depression: 50 percent response to active agent 32 percent response to placebo - Dysthymia (fluoxetine, ser$aline, and amisulpride): 59 percent response to active agent 37 percent response to placebo * Both older and newer antidepressants demonstrate similar efficacy. * Drop-out rates due to all causes combined are similar for newer and older agents: o Drop-out rates due to adverse effects are slightly higher for older agents. . Newer agents are often easier to use because of single daily dosing and less titration. o SSRls and all other antidepressants marketed subsequently. Source: AHCPR, 1999. diagnosis (more similar to adjustment disorder with depressed mood than major depression), length of trial (often an inadequate 4 weeks), and either lack of placebo control or unusually low or high placebo response rates (S&man, 1998). Post-marketing surveillance in Germany, which found few adverse effects of Hypericum, depended upon spontaneous reporting of side effects by patients, an approach that would not be considered acceptable in this country (Deltito & Beyer, 1998). In clinical use, the most commonly encountered adverse effect noted appears to be sensitivity to sunlight. Basic questions about mechanism of action and even the optimal formulation of a pharmaceutical product from the plant remain; dosage in the randomized German trials varied by sixfold (Linde et al., 1996). Several pharmacologically active components of St. John's wort, including hypericin, 264 have been identified (Nathan, 1999); although their long half-lives in theory should permit once daily dosing, in practice a schedule of 300 mg three times a time is most commonly used. While initial speculation about significant MAO-inhibiting properties of hypericum have been largely discounted, possible serotonergic mechanisms suggest that combining this agent with an SSRI or other serotonergic antidepressant should be approached with caution. However, data regarding safety of hypericum in preclinical models or clinical samples are few (Nathan, 1999). At least two placebo-controlled trials in the United States are under way to compare the efficacy of Hypericum with that of an SSRI. Augmentation Strategies The transition from one antidepressant to another is time consuming, and patients sometimes feel worse in the process (Thase & Rush, 1997). Many clinicians bypass these problems by using a second medication to augment an ineffective antidepressant. The best studied strategies of this type are lithium augmentation, thyroid augmentation, and TCA-SSRI combinations (Nierenberg & White, 1990; Thase & Rush, 1997; Crismon et al., 1999). Increasingly, clinicians are adding a noradrenergic TCA to an ineffective SSRI or vice versa. In an earlier era, such polypharmacy (the prescription of multiple drugs at the same time) was frowned upon. Thus far, the evidence supporting TCA-SSRI combinations is not conclusive (Thase & Rush, 1995). Caution is needed when using these agents in combination because SSRIs inhibit metabolism of several TCAs, resulting in a substantial increase in blood levels and toxicity or other adverse side effects from TCAs (Preskorn & Burke, 1992). Psychotherapy and Counseling Many people prefer psychotherapy or counseling over medication for treatment of depression (Roper, 1986; Seligman1995). Research conducted in the past two decades has helped to establish at least several newer forms of time-limited psychotherapy as being as effective as antidepressant pharmacotherapy in mild-to- Adults and Mental Health moderate depressions (DiMascio et al., 1979; Elkin et al., 1989; Hollon et al., 1992; Depression Guideline Panel, 1993; Thase, 1995; Persons et al., 1996). The newer depression-specific therapies include cognitive- behavioral therapy (Becket al., 1979) and interpersonal psychotherapy (Klerman et al., 1984). These approaches use a time-limited approach, a present tense (`here-and-now") focus, and emphasize patient education and active collaboration. Interpersonal psychotherapy centers around four common problem areas: role disputes, role transitions, unresolved grief, and social deficits. Cognitivebehavioral therapy takes a more structured approach by emphasizing the interactive nature of thoughts, emotions, and behavior. It also helps the depressed patient to learn how to improve coping and lessen symptom distress. There is no evidence that cognitive-behavioral therapy and interpersonal psychotherapy are differentially effective (Elkin et al., 1989; Thase, 1995). As reported earlier, both therapies appear to have some relapse prevention effects, although they are much less studied than the pharmacotherapies. Other more traditional forms of counseling and psycho- therapy have not been extensively studied using a randomized clinical trial design (Depression Guideline Panel, 1993). It is important to determine if these more traditional treatments, as commonly practiced, are as effective as interpersonal psychotherapy or cognitive- behavioral therapy. The brevity of this section reflects the succinctness of the findings on the effectiveness of these interventions as well as the lack of differential responses and "side effects." It does not reflect a preference or superiority of medication except in conditions such as psychotic depression where psychotherapies are not effective. Bipolar Depression Treatment of bipolar depression'2 has received surprisingly little study (Zornberg &Pope, 1993). Most psychiatrists prescribe the same antidepressants for l2 Bipolar depression refers to episodes with symptoms of depression in patients diagnosed with bipolar disorder. 265 Mental Health: A Report of the Surgeon General treatment of bipolar depression as for major depressive disorder, although evidence is lacking to support this practice. It also is not certain that the same strategies should be used for treatment of depression in bipolar II (i.e., major depression plus a history of hypomania) and bipolar I (i.e., major depression with a history of at least one prior manic episode) (DSM-IV). Pharmacotherapy of `bipolar depression typically begins with lithium or an alternate mood stabilizer (DSM-IV; Frances et al., 1996). Mood stabilizers reduce the risk of cycling and have modest antidepressant effects; response rates of 30 to 50 percent are typical (DSM-IV; Zomberg & Pope, 1993). For bipolar depressions refractory to mood stabilizers, an antidepressant is typically added. Bipolar depression may be more responsive to nonsedating antidepressants, including the MAOIs, SSRIs, and bupropion (Cohn et al., 1989; Haykal & Akiskal, 1990; Himmelhoch et al., 1991; Peet, 1994; Sachs et al., 1994).The optimal length of continuation phase pharmacotherapy of bipolar depression has not been established empirically (DSM-IV). During the continuation phase, the risk of depressive relapse must be counterbalanced against the risk of inducing mania or rapid cycling (Kukopulos et al., 1980; Wehr & Goodwin, 1987; Solomon et al., 1995). Although not all studies are in agreement, antidepressants may increase mood cycling in a vulnerable subgroup, such as women with bipolar II disorder (Coryell et al., 1992; Bauer et al., 1994). Lithium is associated with increased risk of congenital anomalies when taken during the first trimester of pregnancy, and the anticonvulsants are contraindicated (see Cohen et al., 1994, for a review). This is problematic in view of the high risk of recurrence in pregnant bipolar women (Viguera & Cohen 1998). Pharmacotherapy, Psychosocial Therapy, and Multimodal Therapy The relative efficacy of pharmacotherapy and the newer forms of psychosocial treatment, such as interpersonal psychotherapy and the cognitive-behavioral therapies, is a controversial topic (Meterissian & Bradwejn, 1989; Klein &Ross, 1993; Munoz et al., 1994; Persons et al., 1996). For major depressive episodes of mild to moderate severity, meta-analyses of randomized clinical trials document the relative equivalence of these treatments (Dobson, 1989; Depression Guideline Panel, 1993). Yet for patients with bipolar and psychotic depression, who were excluded from these studies, pharmacotherapy is required: there is no evidence that these types of depressive episodes can be effectively treated with psychotherapy alone (Depression Guideline Panel, 1993; Thase, 1995). Current standards of practice suggest that therapists who withhold somatic treatments (i.e., pharmacotherapy or ECT) from such patients risk malpractice (DSM-IV; Klerman, 1990; American Psychiatric Association, 1993; Depression Guideline Panel, 1993). For .patients hospitalized with depression, somatic therapies also are considered the standard of care (American Psychiatric Association, 1993). Again, there is little evidence for the efficacy of psychosocial treatments alone when used instead of pharmacotherapy, although several studies suggest that carefully selected inpatients may respond to intensive cognitive-behavioral therapy (DeJong et al., 1986; Thase et al., 1991). However, in an era in which inpatient stays are measured in days, rather than in weeks, this option is seldom feasible. Combined therapies emphasizing both pharmacologic and intensive psychosocial treatments hold greater promise to improve the outcome of hospitalized patients, particularly if inpatient care is followed by ambulatory treatment (Miller et al., 1990; Scott, 1992). Combined therapies-also called multimodal treatments-are especially valuable for outpatients with severe forms of depression. According to a recent meta- analysis of six studies, combined therapy (cognitive or interpersonal psychotherapy plus pharmacotherapy) was significantly more effective than psychotherapy alone for more severe recurrent depression. In milder depressions, psychotherapy alone was nearly as effective as combined therapy (Thase et al., 1997b). This meta-analysis was unable to compare combined 266 therapy with pharmacotherapy alone or placebo due to an insufficient number of patients. In summary, the DSM-IV definition of major depressive disorder spans a heterogenous group of conditions that benefit from psychosocial and/or pharmacological therapies. People with mild to moderate depression respond to psychotherapy or pharmacotherapy alone. People with severe depression require pharmacotherapy or ECT and they may also benefit from the addition of psychosocial therapy. Preventing Relapse of Major Depressive Episodes Recurrent Depression. Maintenance pharmacotherapy is the best-studied means to reduce the risk of recurrent depression (Prien & Kocsis, 1995; Thase & Sullivan, 1995). The magnitude of effectiveness in prevention of recurrent depressive episodes depends on the dose of the active agent used, the inherent risk of the population (i.e., chronicity, age, and number of prior episodes), the length of time being considered, and the patient's adherence to the treatment regimen (Thase, 1993). Early studies, which tended to use lower dosages of medications, generally documented a twofold advantage relative to placebo (e.g., 60 vs. 30 percent) (Prien & Kocsis, 1995). In a more recent study of recurrent unipolar depression, the drug-placebo difference was nearly fivefold (Frank et al., 1990; Kupfer et al., 1992). This trial, in contrast to earlier randomized clinical trials, used a much higher dosage of imipramine, suggesting that full-dose maintenance pharmacotherapy may improve prophylaxis. Indeed, this was subsequently confirmed in a randomized clinical trial comparing full- and half-dose maintenance strategies (Frank et al., 1993). There are few published studies on the prophylactic benefits of long-term pharmacotherapy with SSRIs, bupropion, nefazodone, or venlafaxine. However, available studies uniformly document 1 year efficacy rates of 80 to 90 percent in preventing recurrence of depression (Montgomery et al., 1988; Doogan & Caillard, 1992; Claghom & Feighner, 1993; Duboff, 1993; Shrivastava et al., 1994; Franchini et al., 1997; Stewart et al., 1998). Thus, maintenance therapy with the newer agents is likely to yield outcomes comparable to the TCAs (Thase & Sullivan, 1995). How does maintenance pharmacotherapy compare with psychotherapy? In one study of recurrent depres- sion, monthly sessions of maintenance interpersonal psychotherapy had a 3-year success rate of about 35 percent (i.e., a rate falling between those for active and placebo pharmacotherapy) (Frank et al., 1990). Subsequent studies found maintenance interpersonal psychotherapy to be either a powerful or ineffective prophylactic therapy, depending on the patient/treatment match (Kupfer et al., 1990; Frank et al., 1991a; Spanier et al., 1966). Bipolar Depression. No recent randomized clinical trials have examined prophylaxis against recurrent depression in bipolar disorder. In one older, well- controlled study, recurrence rates of more than 60 percent were observed despite maintenance treatment with lithium, either alone or in combination with imipramine (Shapiro et al., 1989). 267 Acute Phase Efficacy Success rates of 80 to 90 percent were once expected with lithium for the acute phase treatment of mania (e.g., Schou, 1989); however, lithium response rates of only 40 to 50 percent are now commonplace (Frances et al., 1996). Most recent studies thus underscore the limitations of lithium in mania (e.g., Gelenberg et al., 1989; Small et al., 1991; Freeman et al., 1992; Bowden et al., 1994). The apparent decline in lithium responsiveness may be partly due to sampling bias (i.e., university hospitals treat more refractory patients), but could also be attributable to factors such as younger age of onset, increased drug abuse comorbidity, or shorter therapeutic trials necessitated by briefer hospital stay (Solomon et al., 1995). The effectiveness of acute phase lithium treatment also is partially dependent on the clinical characteristics of the manic episode: dysphoric/mixed, psychotic, and rapid cycling episodes are less responsive to lithium alone (DSM-IV; Solomon et al., 1995). Adults and Mental Health Mental Health: A Report of the Surgeon General A number of other medications initially developed for other indications are increasingly used for lithium- refractory or lithium-intolerant mania. The efficacy of two medications, the anticonvulsants carbamazepine and divalproex sodium, has been documented in randomized clinical trials (e.g., Small et al., 1991; Freeman et al., 1992; Bowden et al., 1994; Keller et al., 1992). Divalproex sodium has received FDA approval for the treatment of mania. The specific mechanisms of action for these agents have not been established, although they may stabilize neuronal membrane systems, including the cyclic adenosine monophosphate second messenger system (Post, 1990). The anticonvulsant medications under investigation for their effectiveness in mania include lamotrigine and gabapentin. Another newer treatment, verapamil, is a calcium channel blocker initially approved by the FDA for treatment of cardiac arrhythmias and hypertension. Since the mid- 198Os, clinical reports and evidence from small randomized clinical trials suggest that the calcium channel blockers may have antimanic effects (Dubovsky et al., 1986; Garza-Trevino et al., 1992; Janicak et al., 1992, 1998). Like lithium and the anticonvulsants, the mechanism of action of verapamil has not been established. There is evidence of abnormalities of intracellular calcium levels in bipolar disorder (Dubovsky et al., 1992), and calcium's role in modulating second messenger systems (Wachtel, 1990) has spurred continued interest in this class of medication. If effective, verapamil does have the additional advantage of having a lower potential for causing birth defects than does lithium, divalproex, or carbamazepine. Adjunctive neuroleptics and high-potency benzo- diazepines are used often in combination with mood stabilizers to treat mania. The very real risk of tardive dyskinesia has led to a shift in favor of adjunctive use of benzodiazepines instead of neuroleptics for acute stabilization of mania (Chouinard, 1988; Lenox et al., 1992). The novel antipsychotic clozapine has shown promise in otherwise refractory manic states (Suppes et al., 1992), although such treatment requires careful monitoring to help protect against development of agranulocytosis, a potentially lethal bone marrow toxicity. Other newer antipsychotic medications, including risperidone and olanzapine, have safer side effect profiles than clozapine and are now being studied in mania. For manic patients who are not responsive to or tolerant of pharmacotherapy, ECT is a viable alternative (Black et al., 1987; Mukherjee et al., 1994). Further discussion of antipsychotic drugs and their side effects is found in the section on schizophrenia. Maintenance Treatment to Prevent Recurrences of Mania The efficacy of lithium for prevention of mania also appears to be significantly lower now than in previous decades; recurrence rates of 40 to 60 percent are now typical despite ongoing lithium therapy (Prien et al., 1984; Gelenberg et al., 1989; Winokur et al., 1993). Still, more than 20 studies document the effectiveness of lithium in preventing suicide (Goodwin &Jan&on, 1990). Medication noncompliance almost certainly plays a role in the failure of longer term lithium maintenance therapy (Aagaard et al., 1988). Indeed, abrupt discontinuation of lithium has been shown to accelerate the risk of relapse (Suppes et al., 1993). Medication "holidays" may similarly induce a lithium- refractory state (Post, 1992), although data are conflicting (Coryell et al., 1998). As noted earlier, antidepressant cotherapy also may accelerate cycle frequency or induce lithium-resistant rapid cycling (Kukopulos et al., 1980; Wehr & Goodwin, 1987). With increasing recognition of the limitations of lithium prophylaxis, the anticonvulsants are used increasingly for maintenance therapy of bipolar disorder. Several randomized clinical trials have demonstrated the prophylactic efficacy of carbamazepine (Placidi et al., 1986; Lerer et al., 1987; Coxhead et al., 1992), whereas the value of divalproex preventive therapy is only supported by uncontrolled studies (Calabrese & Delucchi, 1990; McElroy et al., 1992; Post, 1990). Because of increased teratogenic risk associated with these agents, there is a need to obtain and evaluate information on alternative interventions for women with bipolar disorder of childbearing age. 268 Service Delivery for Mood Disorders The mood disorders are associated with significant suffering and high social costs, as explained above (Broadhead et al., 1990; Greenberg et al., 1993; Wells et al., 1989; Wells et al., 1996). Many treatments are efficacious, yet in the case of depression, significant numbers of individuals either receive no care or inappropriate care (Katon et al., 1992; Narrow et al., 1993; Wells et al., 1994; Thase, 1996). Limitations in insurance benefits or in the management strategies employed in managed care arrangements may make it impossible to deliver recommended treatments. In addition, treatment outcome in real-world practice is not as effective as that demonstrated in clinical trials, a problem known. as the gap between efficacy and effectiveness (see Chapter 2). The gap is greatest in the primary care setting, although it also is observed in specialty mental health practice. There is a need to develop case identification approaches for women in obstetrics/gynecology settings due to the high risk of recurrence in childbearing women with bipolar disorder. Little attention also has been paid to screening and mental health services for women in obstetrics/gynecology settings despite their high risk of depression (Miranda et al., 1998). Primary care practice has been studied'extensively, revealing low rates of both recognition and appropriate treatment of depression. Approximately one-third to one-half of patients with major depression go unrecognized in primary care settings (Gerber et al., 1989; Simon & Von Korff, 1995). Poor recognition leads to unnecessary and expensive diagnostic procedures, particularly in response to patients' vague somatic complaints (Callahan et al., 1996). Fewer than one-half receive antidepressant medication according to Agency for Health Care Policy Research recommendations for dosage and duration (Simon et al., 1993; Rost et al., 1994; Katon 1995, 1996; Schulberg et al., 1995; Simon & Von Korff, 1995). About 40 percent discontinue their medication on their own during the first 4 to 6 weeks of treatment, and fewer still continue their medication for the recommended period of 6 months (Simon et al., 1993). Although drug treatment is the most common strategy Adults and Mental Health for treating depression in primary care practice (Glfson & Klerman, 1992; Williams et al., 1999), about one- half of primary care physicians express a preference to include counseling or therapy as a component of treatment (Meredith et al., 1994, 1996). Few primary care practitioners, however, have formal training in psychotherapy, nor do they have the time (Meredith et al., 1994, 1996). A variety of strategies have been developed to improve the management of depression in primary care settings (cited in Katon et al., 1997). These are discussed in more detail in Chapter 5 because of the special problem of gecognizing and treating depression among older adults. Another major service delivery issue focuses on the substantial number of individuals with mood disorders who go on to develop a chronic and disabling course. Their needs for a wide array of services are similar to those of individuals with schizophrenia. Many of the service delivery issues relevant to individuals with severe and persistent mood disorders are presented in the final sections of this chapter. Schizophrenia Overview Our understanding of schizophrenia has evolved since its symptoms were first catalogued by German psychiatrist Emil Kraepelin in the late 19th century (Andreasen, 1997a). Even though the cause of this disorder remains elusive, its frightening symptoms and biological correlates have come to be quite well defined. Yet misconceptions abound about symptoms: schizophrenia is neither "split personality" not "multiple personality." Furthermore, people with schizophrenia are not perpetually incoherent or psychotic (DSM-IV; Mason et al., 1997) (Table 4-6). Schizophrenia is characterized by profound disruption in cognition and emotion, affecting the most fundamental human attributes: language, thought, perception, affect, and sense of self. The array of symptoms, while wide ranging, frequently includes psychotic manifestations, such as hearing internal voices or experiencing other sensations not connected to an obvious source (hallucinations) and assigning 269 Mental Health: A Report of the Surgeon General Table 4-6. DSM-IV diagnostic criteria for schizophrenia 4. B. C. D. E. F. Characteristic symptoms: Two (or more) of the following, each present for a significant portion of time during a l- month period (or less if successfully treated): (1) delusions (2) hallucinations (3) disorganized speech (e.g., frequent derailment or incoherence) (4) grossly disorganized or catatonic behavior (5) negative symptoms, i.e., affective flattening, alogia, or avolition Note: Only one Criterion A symptom is required if delusions are bizarre or hallucinations consist of a voice keeping up a running commentary on the person's behavior or thoughts, or two or more voices conversing with each other. Social/occupational dysfunction: For a significant portion of the time since the onset of the disturbance, one or more major areas of functioning such as work, interpersonal relations, or self-care are markedly below the level achieved prior to the onset (or when the onset is in childhood or adolescence, failure to achieve expected level of interpersonal, academic, or occupational achievement). Duration: Continuous signs of the disturbance persist for at least 6 months. This 6-month period must include at least 1 month of symptoms (or less if successfully treated) that meet Criterion A (i.e., active-phase symptoms) and may include periods of prodromal or residual symptoms. During these prodromal or residual periods, the signs of the disturbance may be manifested by only negative symptoms or two or more symptoms listed in Criterion A present in an attenuated form (e.g., odd beliefs, unusual perceptual experiences). Schizoaffective and mood disorder exclusion: Schizoaffective disorder and mood disorder with psychotic features have been ruled out because either (1) no major depressive, manic, or mixed episodes have occurred concurrently with the active-phase symptoms: or (2) if mood episodes have occurred during active-phase symptoms, their total duration has been brief relative to the duratipn of the active and residual periods. Substance/general medical condition exclusion: The disturbance is not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication) or a general medical condition. Relationship to a pervasive developmental disorder; If there is a history of autistic disorder or another pervasive developmental disorder, the additional diagnosis of schizophrenia is made only if prominent delusions or hallucinations are also present for at least a month (or less if successfully treated). unusual significance or meaning to normal events or holding fixed false personal beliefs (delusions). No single symptom is definitive for diagnosis; rather, the diagnosis encompasses a pattern of signs and symptoms, in conjunction with impaired occupational or social functioning (DSM-IV). Symptoms are typically divided into positive and negative symptoms (see Table 4-7) because of their impact on diagnosis and treatment (Crow, 1985; Andreasen, 1995; Eaton et al., 1995; Klosterkotter et al., 1995; Maziade et al., 1996). Positive symptoms are those that appear to reflect an excess or distortion of normal functions (Peralta & Cuesta, 1998). The diagnosis of schizophrenia, according to DSM-IV, requires at least l-month duration of two or more positive symptoms, unless hallucinations or delusions are especially bizarre, in which case one alone suffices for diagnosis. Negative symptoms are those that appear to reflect a diminution or loss of normal functions (Roy & DeVriendt, 1994; Crow, 1995; Blanchard et al., 1998). These often persist in the lives of people with schizophrenia during periods of low (or absent) 270 Adults and Mental Health Table 4-7. Positive and negative symptoms of schizophrenia ~~ Posltive Symptoms of Schizophrenia I Delusions are firmly held erroneous beliefs due to distortions or exaggerations of reasoning and/or misinterpretations of j perceptions or experiences. Delusions of being followed or watched are common, as are beliefs that comments, radio or TV programs, etc., are directing special messages directly to him/her. , Hallucinations are distortions or exaggerations of perception in any of the senses, although auditory hallucinations ("hearing voices" within, distinct from one's own thoughts) are the most common, followed by visual hallucinations. Disorganized speech/thinking, also described as "thought disorder" or "loosening of associations," is a key aspect of ! schizophrenia. Disorganized thinking is usually assessed primarily based on the person's speech. Therefore, tangential, j ; I I oosely associated, or incoherent speech severe enough to substantially impair effective communication is used as an ndicator of thought disorder by the DSM-IV. I / I Gross/y disorganized behavior includes difficulty in goal-directed behavior (leading to difficulties iii activities in daily living), unpredictable agitation or silliness, social disinhibition, or behaviors that are bizarre to onlookers. Their purposelessness distinguishes them from unusual behavior prompted by delusional beliefs. L Catatonic behaviors are characterized by a marked decrease in reaction to the immediate surrounding environment, sometimes taking the form of motionless and apparent unawareness, rigid or bizarre postures, or aimless excess motor activity. Other symptoms sometimes present in schizophrenia but not often enough to be definitional alone include affect inappropriate to the situation or stimuli, unusual motor behavior (pacing, rocking), depersonalization, derealization, and somatic preoccupations. Negative Symptoms of Schizophrenia Affective Mtenhg is the reduction in the range and intensity of emotional expression, including facial expression, voice tone, eye contact, and body language. Alogla, or poverty of speech, is the lessening of speech fluency and productivity, thought to reflect slowing or blocked ' thoughts, and often manifested as laconic, einpty replies to questions. 1 Avolition is the reduction, difficulty, or inability to initiate and persist in goal-directed behavior; it is often mistaken for apparent disinterest. j I positive symptoms. Negative symptoms are difficult to evaluate because they are not as grossly abnormal as positives ones and may be caused by a variety of other factors as well (e.g., as an adaptation to a persecutory delusion). However, advancements in diagnostic assessment tools are being made, Diagnosis is complicated by early treatment of schizophrenia's positive symptoms. Antipsychotic medications, particularly the traditional ones, often produce side effects that closely resemble the negative symptoms of affective flattening and avolition. In addition, other negative symptoms are sometimes present in schizophrenia but not often enough to satisfy diagnostic criteria (DSM-IV): loss of usual interests or pleasures (anhedonia); disturbances of sleep and eating; dysphoric mood (depressed, anxious, irritable, or angry mood); and difficulty concentrating or focusing attention. Currently, discussion is ongoing within the field regarding the need for a third category of symptoms for diagnosis: disorganized symptoms (Brekke et al., 1995; Cuesta & Peralta, 1995). Disorganized symptoms include thought disorder, confusion, disorientation, and memory problems. While they are listed by DSM-IV as common in schizophrenia-especially during exacerbations of positive or negative symptoms (DSM-IV)-they do not yet constitute a formal new category of symptoms. Some researchers think that a new category is not warranted because disorganized symptoms may instead reflect an underlying 271 Mental Health: A Report of the Surgeon General dysfunction common to several psychotic disorders, rather than being unique to schizophrenia (Toomey et al., 1998). Cognitive Dysfunction Recently there has also been more clinical and research attention on cognitive difficulties that many people with schizophrenia experience (Levin et al., 1989; Harvey et al., 1996). Cognitive problems include information processing (Cadenhead et al., 1997), abstract categorization (Keri et al., 1998), planning and regulating goal-directed behavior ("executive functions"), cognitive flexibility, attention, memory, and visual processing (Cornblatt & Keilp, 1994; Mahurin et al., 1998). These cognitive problems are especially associated with negative and disorganized symptoms but seem to be distinct (-Basso et al., 1998; Brekke et al., 1995; Cuesta & Peralta, 1995; Voruganti et al., 1997), although others disagree (Roy & DeVriendt, 1994). These cognitive problems vary from person to person and can change over time. In some situations it is unclear whether such deficits are due to the illness or to the side effects of certain neuroleptic medications (Zalewski et al., 1998). As research oh brain functioning grows more sophisticated, some models posit dysfunction of fundamental cognitive processes at the center of schizophrenia, rather than as one of numerous symptoms (Andreasen, 1997a, 1997b; Andreasen et al., 1996). On the basis of neuro- psychological and neuroanatomical data, for example, some researchers posit that schizophrenia is a disorder of the prefrontal cortex and its ability to perform the essential cognitive function of working memory (Goldman-Rakic & Selemon, 1997). Problems in such fundamental areas as paying selective attention, problem-solving, and remembering can cause serious difficulties in learning new skills (social interaction, treatment and rehabilitation) and performing daily tasks (Medalia et al., 1998); treatment of such deficits is discussed in later sections of the chapter. Functiona/ impairment The criteria for a diagnosis of schizophrenia include functional impairment in addition to the constellation of symptoms outlined above. For formal diagnosis, a person must be experiencing significant dysfunction in one or more major areas of life activities such as interpersonal relations, work or education, family life, communication, or self-care (Docherty et al., 1996; Patterson et al., 1997, 1998). These problems result from the complex of symptoms and their sequelae, but have been linked more to negative than to positive symptoms (Ho et al., 1998). *They have serious economic, social, and psychological effects: unemployment, disrupted education, limited social relationships, isolation, legal involvement, family stress, and substance abuse. Such sequelae form the most distressing aspects of the illness for many people and contribute to the increased risk of suicide among people diagnosed with schizophrenia. Cultural Variation On first consideration, symptoms like hallucinations, delusions, and bizarre behavior seemeasily defined and clearly pathological. However, increased attention to cultural variation has made it very clear that what is considered delusional in one culture may be accepted as normal in another (Lu et al., 1995). For example, among members of some cultural groups, "visions" or "voices" of religious figures are part of normal religious experience. In many communities, "seeing" or being "visited" by a recently deceased person are not unusual among family members. Therefore, labeling an experience as pathological or a psychiatric symptom can be a subtle process for the clinician with a different cultural or ethnic background from the patient; indeed, cultural variations and nuances may occur within the diverse subpopulations of a single racial, ethnic, or cultural group. Often, however, clinicians' training, skills, and views tend to reflect their own social and cultural influences. Clinicians can misinterpret and misdiagnose patients whose cognitive style, norms of emotional expression, and social behavior are from a different culture, unless clinicians become culturally competent 272 (see Chapter 2 and Center for Mental Health Services [CMHS], 1997). For example, clinicians may misinterpret a client's deferential avoidance of direct eye contact as a sign of withdrawal or paranoia, or a normal emotional reserve as flattened affect if they are unaware of the norms of cultural groups other than their own. There is some empirical evidence that such misinterpretations happen widely. One finding is that African-American patients are more likely than white patients to be diagnosed with severe psychotic disorders in clinical settings (Snowden & Cheung, 1990; Hu et al., 1991; Lawson et al., 1994, Strakowski et al., 1995). The overdiagnosis of psychotic disorders among African Americans is interpreted by some as evidence of clinician bias. People with differing cultural backgrounds also may experience and exhibit true schizophrenia symptoms differently (Brekke &Barrio, 1997; Thakker & Ward, 1998). Culture shapes the content and form of positive and negative symptoms (Maslowski et al., 1998). For example, people in non-Western countries report catatonic behavior among psychiatric patients much more commonly than in the United States. How culture, societal conditions, and diagnosing tendencies among clinicians in various countries interact to create these differences is being studied but is not yet well understood. Nodescription of symptoms can adequately convey a person's experience of schizophrenia or other serious mental illness. Two individuals with very different internal experiences and outward presentations may be diagnosed with schizophrenia, if both meet the diagnostic criteria (Brazo & Dollfus, 1997; Kirkpatrick et al., 1998). Additionally, their symptoms and presentation may vary considerably over time (Ribeyre & Dollfus, 1996). This considerable variation (Basso et al., 1997; Sperling et al., 1997) has led to the naming of several subtypes of schizophrenia, depending on what symptoms are most prominent. Currently these are seen as variations within a single disorder. Similarly, the diagnosis is often difficult because other mental disorders share some common features. Diagnosis depends on the details of how people behave and what they report during an evaluation, the diagnostician, and 273 Adults and Mental Health variations in the illness over time. Therefore, many people receive more than one diagnostic label over the course of their involvement with mental health services. Refining the definition of schizophrenia and other serious mental illnesses to account for these `individual and cultural variations remains a challenge to researchers and clinicians. Prevalence Studies of schizophrenia's prevalence in the general population vary depending on the way diagnostic criteria are applied and the population, setting, and method of study (Hafner & ar'der Heiden, 1997). In general, l-year prevalence in adults ages 18 to 54 is estimated to be 1.3 percent (Table 4-l). Onset generally occurs during young adulthood (mid-20s for men, late- 20s for women), although earlier and later onset do occur. It may be abrupt or gradual, but most people experience some early signs, such as increasing social withdrawal, loss of interests, unusual behavior, or decreases in functioning prior to the beginning of active positive symptoms. These are often the first behaviors to worry family members and friends. Prevalence of Comorbid Medical illness The mortality rate in persons with schizophrenia is significantly higher than that of the general population. While elevated suicide accounts for some of the excess mortality-and is a serious problem in its own right-comorbid somatic illnesses also contribute to excess mortality. Until recently, there was little information on the prevalence of comorbid medical illnesses in people with schizophrenia (Jeste et al., 1996). A recent study was among the first to document systematically that people with schizophrenia are beset by vision and dental problems, as well as by high blood pressure, diabetes, and sexually transmitted diseases. Their self-reported lifetime rates of high blood pressure (34.1 percent), diabetes (14.9 percent), and sexually transmitted diseases (10.0 percent) are higher than those for people of similar age in the general population (Dixon et al., 1999; Dixon et al., in press-a). The reasons for excess medical comorbidity are unclear, yet medical comorbidity is independently Mental Health: A Report of the Surgeon General associated with lower perceived physical health status, more severe psychosis and depression, and greater likelihood of a history of a suicide attempt (Dixon et al., 1999). These findings have important implications for improving patient management (Dixon et al., in press-b). Course and Recovery It is difficult to study the course of schizophrenia and other serious mental illnesses because of the changing nature of diagnosis, treatment, and social norms (Schultz et al., 1997). Overall, research indicates that schizophrenia's course over time varies considerably from person to person (DSM-IV; Wiersma et al., 1998) and varies for any one person (Moller & von Zerssen, 1995). The variability may emanate from the underlying heterogeneity of the disease process itself, as well as from biological and genetic vulnerability, neurocognitive impairments, socio- cultural stressors, and personal and social factors that confer protection against stress and vulnerability (Liberman et al., 1980; Nuechterlein et al., 1994). Most individuals experience periods of symptom exacerbation and remission, while others maintain a steady level of symptoms and disability which can range from moderate to severe (Wiersma et al:, 1998). Most people experience at least one, often more, relapse after their first actively psychotic episode (Herz & Melville, 1980; Falloon, 1984; Gaebel et al., 1993; Wiersma et al., 1998). Often these are periods of more intense positive symptoms, yet the person continues to struggle with negative symptoms in between episodes (Gupta et al., 1997; Schultz et al., 1997). However, whether such exacerbations have the same degree of disabling and distressing effects each time depends greatly on the person's coping skills and support system. Over time, many people learn successful ways of managing even severe symptoms to moderate their disruptiveness to daily life (e.g., Hamera et al., 1992). Therefore, earlier years with the illness are often more difficult than later ones. Additionally, gradual onset and delays in obtaining treatment seem to raise the risk of longer episodes of acute illness over time (Wiersma et al., 1998). Early treatment with antipsychotic medications has been found to predict better long-term outcomes for people experiencing their first psychotic episode, as compared with a variety of control groups, including those in more advanced stages (Lieberman et al., 1996; Wyatt et al., 1997, 1998; Wyatt & Henter, 1998). The course of schizophrenia is also influenced by personal orientation and motivation, and by supports in the form of skill-building assistance and rehabilitation (Lieberman et al., 1996; Awad et al., 1997; Hafner & an der Heiden, 1997). These, in turn, are heavily influenced by regional, cultural,~ and socioeconomic factors in addition to individual factors (Dassori et al., 1995). Family factors also are related to the course of illness. Following hospitalization, patients who return home are more likely to relapse if their family is identified as critical, hostile, or emotionally overinvolved than if their family is not so identified (Jenkins & Kamo, 1992; Bebbington & Kuipers, 1994). This is a controversial finding because it appears to blame family members (Hatfield et al., 1987). However, recent studies suggest an interaction between families and the patient (Goldstein, 1995b), suggesting that the negative emotions of some family members may be a reaction to, more than a cause of relapse in, the family member. Blaming either the family or the patient overlooks important ways both parties interact and how such interactions are associated with the course of schizophrenia. In addition, there is a need to examine what part the role of families' prosocial functioning (family warmth and family support) plays in the course of schizophrenia to identify how family factors can serve as protective factors (Lopez et al., in press). Despite the variability, some generalizations about the long-term course of schizophrenia are possible largely on the basis of longitudinal research. A small percentage (10 percent. or so) of patients seem to remain severely ill over long periods of time (Jablensky et al., 1992; Gerbaldo et al., 1995). Most do not return to their prior state of mental function. Yet several long- term studies reveal that about one-half to two-thirds of people with schizophrenia significantly improve or 274 recover, some completely (for a review see Harding et al., 1992). These studies were important because they began to dispel the traditional view, dating back to the 19th century, that schizophrenia had a uniformly downhill course (Harding et al., 1992). Several other longitudinal studies, however, found less favorable patient outcomes with other cohorts of patients (Harrow et al., 1997). The differences in outcomes between the studies are thought to be explained on the basis of differences in patient age, length of followup, expectations about prognosis, and types of services received (Harrow et al., 1997). The importance of a rehabilitation focus in shaping patient outcome was supported by one of the only direct comparisons between patient cohorts. The Vermont cohort consisted of the most severely affected patients from the "back wards!' of the state hospital (Harding et al., 1987). As part of a statewide program of deinstitutionalization, the cohort was released in the 1950s to a hospital-based rehabilitation program and then to what was at the time an innovative, broad-based community rehabilitation program, which incorporated social, residential, and vocational components.`3 Patients' degree of recovery at followup after three decades was measured by global * functional improvement and other functional measures..One-half to two-thirds of the Vermont cohort significantly improved or recovered (Harding et al., 1987). The receipt of community-based rehabilitation was considered key to their recovery on the basis of a study comparing their progress with that of a matched cohort of deinstitutionalized patients from Maine. The Maine cohort did not function as well after receiving more traditional aftercare services without a rehabilitation emphasis (Desist0 et al., 1995a, 1995b). Although the findings from the Vermont cohort, as well as those from a cohort in Switzerland (Ciompi, 1980), are widely cited by consumers as evidence of recovery from mental illness, a topic discussed in detail in Chapter 2, it bears noting that patients in the Vermont cohort represented a less rigorously defined I3 These are the vital components of most contemporary rehabil- itation programs (see section on szrvice delivery). In summary, schizophrenia does not follow a single pathway. Rather, like other mental and somatic disorders, course and recovery are determined by a constellation of biological, psychological, and sociocultural factors. That different degrees of recovery are attainable has offered hope to consumers and families. Gender and Age at Onset There appear to be gender differences in the course and prognosis of schizophrenia. Women are more likely than men to experience later onset, more pronounced mood symptoms, and better prognosis (DSM-IV), although the prognosis difference recently has come under question. 275 Current research (e.g., Hafner & an der Heiden, 1997; Hafner et al., 1998) suggests that some of the apparent gender differences in course and outcome occur because for some women schizophrenia does not develop until after menopause. This delay is thought to be related to the protective effects of estrogen, the levels of which diminish at menopause. According to this line of reasoning, men have no such delay because they lack the protective estrogen levels. Therefore, a higher proportion of men develop schizophrenia earlier. Generally, early onset (younger than age 25 in most studies) is associated with more gradual development of symptoms, more prominent negative symptoms across the course (DSM-IV), and more neuro- psychological problems (Basso et al., 1997; Symonds et al., 1997), regardless of gender. Early onset also usually involves more disruption of adult milestones, such as education, employment achievements, and long-term social relationships (Nowotny et al., 1996). People with later onset often have reached these milestones, cushioning them from disruptive sequelae and enabling better coping with symptoms (Hafner et al., 1998). Therefore, early onset (more men than women) often yields a more difficult first several years, although not necessarily a worse long-term outcome. Adults and Mental Health conceptualization of schizophrenia than is common today, which may account, in part, for the more favorable outcomes. Mental Health: A Report of the Surgeon General However, it must be emphasized that group probabilities do not necessarily speak to individual cases. Etiology of Schizophrenia The cause of schizophrenia has not yet been determined, although research points to the interaction of genetic endowment and major environmental upheaval during development of the brain. This section first discusses genetic studies and then turns to the evidence for neurodevelopmental disruption. These lines of research are beginning to converge: neurodevelopmental disruption may be the result of genetic and/or environmental stressors early in development, leading to subtle alterations in the brain. Furthermore, environmental factors later in development can either exacerbate or ameliorate expression of genetic or neurodevelopmental defects. The overarching message is that the onset and course of schizophrenia are most likely the result of an interaction between genetic and environmental influences. Current research proposes that schizophrenia is caused by a genetic vulnerability coupled with environmental and psychosocial stressors, the so-called diathesis-stress model (Zubin & Spring, 1977; Russo et al., 1995; Portin & Alanen, 1997). Family studies suggest that people have varying levels of inherited genetic vulnerability, from very low to very high, to schizophrenia. Whether or not the person develops schizophrenia is partly determined by this vulnerability. At the same time, the development of schizophrenia also depends on the amount and types of stresses the person experiences over time. An a@ogy can be drawn to diabetes by virtue of both genetic factors (e.g., family history) and behavioral factors (e.g., diet, exercise, stress) that interact to determine whether or not a given person develops diabetes. How the interaction works in schizophrenia is unknown, yet the subject of ongoing research (Murray et al., 1992; Spaulding, 1997; Jones & Cannon, 1998; van OS & Marcelis, 1998). Family, twin, and adoption studies support the role of genetic influences in schizophrenia (Kendler & Diehl, 1993; McGuffin et al., 1995; Portin & Alanen, 1997). Immediate biological relatives of people with schizophrenia have about 10 times greater risk than that of the general population. Given prevalence estimates, this translates into a 5 to 10 percent lifetime risk for first-degree relatives (including children and siblings) and suggests a substantial genetic component to schizophrenia (e.g., Kety, 1987; Tsuang et al., 1991; Cannon et al., 1998). What also bolsters a genetic role are findings that the identical twin of a person with schizophrenia is at greater risk than a sibling or fraternal twin, and that adoptive relatives do not share the increased risk of biological relatives (see Figure 4-3). However, in about 40 percent of identical twins in which one is diagnosed with schizophrenia, the other never meets the diagnostic criteria. The discordance among identical twins clearly indicates that environ- mental factors likely also play a role (DSM-IV). 276 Despite the evidence for genetic vulnerability to schizophrenia, scientists have not yet identified the genes responsible (Kendler & Diehl, 1993; Levinson et al., 1998). The current consensus is that multiple genes are responsible (Kendler et al., 1996; Kunugi et al., 1996, 1997; Portin & Alanen, 1997; Straub et al., 1998). Numerous brain abnormalities have been found in schizophrenia. For example, patients often have enlarged cranial ventricles (cavities in the brain that transport cerebrospinal fluid), especially the third ventricle (Weinberger, 1987; Schwarzkopf et al., 199 1; Woods & Yurgelun-Todd, 1991; Dykes et al., 1992; Lieberman et al., 1993; DeQuardo et al., 1996), and decreased cerebral size (Schwarzkopf et al., 1991; Ward et al., 1996) compared with control groups. Several studies suggest this may be more common among men (Nopoulos et al., 1997) whose families do not have a history of schizophrenia (Schwarzkopf et al., 1991; Vita et al., 1994). There is also some evidence that at least some people with schizophrenia have unusual cortical laterality, with dysfunction localizing : Adults and Mental Health J"..e 7 -. . . . . . . -. "".-..Mp,.mJ ""..,l"p...-.,.". -12.5% General population 3rd-degree relatives First cousins Uncles/Aunts m 25% Znd-degree relatives m 50% 1 St-degree relatives m 100% ienes shared Nephews/Nieces `Grandchildren Half siblings Parents Siblings Children Fraternal twins Identical twins Relationship to person with schizophrenia 48% I 0 10 20 30 40 50 Risk of developing schizophrenia Source: Q Gotbsman (1991). i to the left hemisphere (Braun et al., 1995). To explain This is perhaps related to unusual neuronal density laterality, some have proposed a prenatal injury or (Selemon et al., 1998) and may be more prevalent insult at the time of left hemisphere development, among patients whose families have a history of which normally lags behind that of the right schizophrenia than those whose do not (Sautter et al., hemisphere (Bracha, 1991). 1995). However, mapping patients' symptoms with The anatomical abnormalities found in different brain regions is complex and variable. Researchers parts of the brain tend to correlate with schizophrenia's believe that the dysfunctions are present in brain positive symptoms (Barta et al., 1990; Shenton et al., circuitry rather than in one or two localized areas of the 1992, Bogerts et al., 1993; Wible et al., 1995) and brain (Andreasenet al., 1997,1998; Wiser et al., 1998). negative symptoms (Buchanan et al., 1993). Positive Excessive levels of the neurotransmitter dopamine symptoms are often linked to temporal lobe have long been implicated in schizophrenia, although dysfunction, as shown by imaging studies that utilize it is unclear whether the excess is a primary cause of blood flow and glucose metabolism. Such dysfunction schizophrenia or a result of a more fundamental possibly is related to abnormal phospholipid dysfunction. More recent evidence implicates much metabolism (Fukuzako et al., 1996). Disorganized greater complexity in the dysregulation of dopamine speech (taken to reflect disorganized thinking) has been and other neurotransmitter systems (Grace, 1991,1992; associated with abnormalities in brain regions Olie & Bayle, 1997). Some of this research ties associated with speech regulation (McGuire et al., schizophrenia to certain variations in dopafine 1998). Negative and cognitive symptoms, especially receptors (Nakamura et al., 1995; Serretti et al., 1998), those related to volition and planning, are commonly while other research focuses on the serotonin system associated with prefrontal lobe dysfunction (Capleton, (Inayama et al., 1996). However, it must be emphasized 1996; Abbruzzese et al., 1997; Mattson et al., 1997). that in many cases it is possible that perturbations in 277 Mental Health: A Report of the Surgeon General neurotransmitter systems may result from complications of schizophrenia, or its treatment, rather than from its causes (Csemansky & Grace, 1998). The "stressors" investigated in schizophrenia research include a wide range of biological, environmental, psychological, and social factors. There is consistent evidence that prenatal stressors are associated with increased risk of the child developing schizophrenia in adulthood, although the mechanisms for these associations are unexplained. Some interesting preliminary research suggests risk factors include maternal prenatal poverty (Cohen, 1993), poor nutrition (Susser & Lin, 1992; Susser et al., 1996, 1998), and depression (Jones et al., 1998). Other stressors are exposure to influenza outbreaks (Mednick et al., 1988; Adams et al., 1993; Rantakallio et al., 1997), war zone exposure (van OS &Selten, 1998), and Rh-factor incompatibility (Hollister, 1996). Their variety suggests other stressors might also be risk factors, under the general rubric of "maternal stress." As a result of such stresses, newborns of low birth weight and short gestation have been linked to increased risk of later developing schizophrenia (Jones et al., 1998), as have delivery complications (Hultrnan et al., 1997; Jones & Cannon, 1998) and other early developmental problems (Brixey et al., 1993; Ellenbroek & Cools, 1998; Portin & Alanen, 1998; Preti et al., 1998). Among children, especially infants, viral central nervous system infections may be associated with greater risk (Rantakallio et al., 1997; Iwahashi et al., 1998), thereby explaining links between schizophrenia and being born or raised in crowded conditions (Torrey & Yolken, 1998) or during the flu- prone winter and spring months (Castrogiovanni et al., 1998). However, support for these hypotheses is inconsistent and incomplete (Yolken & Torrey, 1995). In fact, it is possible that prenatal and obstetric complications associated with schizophrenia could reflect already disrupted fetal development, rather than being causal themselves (Lipska& Weinberger, 1997). More generally, across the life span, the chronic stresses of poverty (Cohen, 1993; Saraceno & Barbui, ,1997) and some facets of minority social status appear to alter the course of schizophrenia. Presently, it is unclear whether and how these risks contribute to the diathesis-stress interaction for any one person because specific causes may differ (Onstad et al., 1991; Cardno & Farmer, 1995; Tsuang & Faraone, 1995; Miller, 1996). Although genetic vulnerability is difficult to control, certain other important factors can be addressed with current knowledge. An awareness of stressors that increase the likelihood of genetic vulnerability being actualized supports preventive strategies, such as good prenatal health care and nutrition. Furthermore, since life stresses can exacerbate the course of the ill&s, access to good quality services and social supports, as well as attention to relapse prevention interventions, can have beneficial effects on longer term outcome (Wiersma et al., 1998). At the same time, researchers and clinicians are striving to integrate findings concerning both diathesis and stress into models of how schizophrenia develops (Andreasen, 1997b). Not only does brain biology influence behavior and experience, but behavior and experience mold brain biology as well. One promising integrative model is the neurodevelopmental theory of schizophrenia developed by Weinberger and others (Murray & Lewis, 1987; Weinberger, 1987, 1995; Bloom, 1993; Weinberger & Lipska, 1995; Lipska & Weinberger, 1997). It posits that schizophrenia develops from "a subtle defect in cerebral development that disrupts late-maturing, highly evolved neocortical functions, and fully manifests itself years later in adult life" (Lip&a & Weinberger, 1997; see also Susser et al., 1998). The nature of the defect, which has not been identified, may be a product of a pre- or neonatal insult to the brain. Further support for the neuro- developmental theory comes from abnormalities in brain structure that have long been found in people with schizophrenia. Such findings have been interpreted to reflect abnormal neuronal migration in early development (Jakob & Beckmann, 1986; Arnold et al., 1991; Akbarian et al., 1993; Falkai et al., 1995). Researchers have developed animal models of early neurodevelopmental dysfunctions that manifest in later behavioral and functional deficits (Geyer et al., 1993; Lipska & Weinberger, 1993; Wilkinson et al., 1994; 278 Adults and Mental Health Table 4-8. Selected treatment recommendations, Schizophrenia Patient Outcomes Research Team t bcommendation 1. Antipsychotic medications, other than clozapine, should be used as the first-line treatment to reduce )sychotic symptoms for persons experiencing an acute symptom episode of schizophrenia. 3ecommendation 2. The dosage of antipsychotic medication for an acute symptom episode should be in the range of 300-l ,000 chlorpromazine (CPZ) equivalents per day for a minimum of 6 weeks. Reasons for dosages outside this range should be justified. The minimum effective dose should be used. ?ecommendation 8.` Persons who experience acute symptom relief with an antipsychotic medication should continue to ,eceive this medication for at least 1 year subsequent to symptom stabilization to reduce the risk of relapse or worsening )f positive symptoms. 3ecommendation 9. The maintenance dosage of antipsychotic medication should be in the range of 300-600 CPZ equivalents (oral or depot) per day. Recommendation 12. Depot antipsychotic maintenance therapy should be strongly considered for persons who have difficulty complying with oral medication or who prefer the depot regimen. Recommendation 23. Individual and group therapies employing well-specified combinations of support, education, and Dehavioral and cognitive skills training approaches designed to address the specific deficits of persons with schizophrenia should be offered over time to improve functioning and enhance other target problems, such as medication noncompliance. Recommendation 24. Patients who have ongoing contact with their families should be offered a family psychosocial intervention that spans at least 9 months and that provides a combination of education about the illness, family support, crisis intervention, and problem-solving skills training. Such interventions should also be offered to nonfamily members. Recommendation 27. Selected persons with schizophrenia should be offered vocational services.* Recommendation 29. Systems of care serving persons with schizophrenia who are high users should include ACT and ACM programs. o Edited Source: Lehman & Steinwachs, 1998a, 1998b. Lipskaet al., 1995) and are influenced by genetics (de Kloet et al., 1996; Zaharia et al., 1996). As promising as these theories are, the causes and mechanisms of schizophrenia remain unknown. Nonetheless, research has uncovered several types of treatment for schizophrenia that are effective in reducing symptoms and functional impairments. Interventions The treatment of schizophrenia has advanced considerably in recent years. A battery of treatments has become available to ameliorate symptoms, to improve quality of life, and to restore productive lives. Treatment and other service interventions often are linked to the clinical phases of schizophrenia: acute phase, stabilizing phase, stable (or maintenance) phase, and recovery phase. Where possible, this report ties available data to these treatment phases. Optimal treatment across all phases of treatment includes some form of pharmacotherapy with antipsychotic medication, usually combined with a variety of psychosocial interventions. Psychosocial interventions include supportive psychotherapy, and family psychoeducational interventions, as well as psychosocial and vocational rehabilitation. The treatment of individuals with schizophrenia who are 279 Mental Health: A Report of the Surgeon General high service users should be orchestrated by an interdisciplinary treatment team to ensure continuity of services (i.e., assertive community treatment, which is discussed below). Others may benefit from less intensive forms of case management and various self- help and consumer-operated services, described later. It is also important to assist individuals with schizo- phrenia in meeting their many related needs, such as for supported housing, transportation, and general medical care. These are among the 30 pivotal treatment recommendations of the Agency for Health Care Policy and Research- and NIMH-sponsored Schizophrenia Patient Outcomes Research Team (PORT), which developed its recommendations on the basis of a comprehensive review of the treatment outcomes literature (Lehman & Steinwachs, 1998a). Table 4-8 contains a distillation of key recommendations. Although the Schizophrenia PORT study recommendations are grounded in research such as that reviewed in the following paragraphs, it is noteworthy that treatment practices fail to adhere to these recommendations, with conformance generally falling below 50 percent (Lehman & Steinwachs, 1998b). The disturbing gap between knowledge and practice is discussed later in this chapter. Many barriers. exist in the transfer of information about treatment. and evidence-based practice to clinicians, family members, and service users. fbarmacotherapy Pharmacotherapies are the most extensively evaluated intervention for schizophrenia. The conventional or older antipsychotic medications (e.g., chlorpromazine, haloperidol, fluphenazine, molindone) and the more recently developed medications (e.g., clozapine, risperidone, olanzapine, quetiapine, sertindole) are used to reduce the positive symptoms of schizophrenia. The newer medications, often called atypical because they have a different mechanism action than their predecessors, also appear in preliminary studies to be more effective against negative symptoms, display fewer side effects, and show promise for treating people for whom older medications are ineffective (Ballus, 1997). Their introduction has created more treatment options for people with schizophrenia and other serious mental illnesses. Although the newer, more broadly effective medications have increased hopes for recovery, they also have resulted in greater treatment complexity for patients and providers alike (Fenton & Kane, 1997). Conventional antipsychotics have been shown to be highly effective both in treating acute symptom episodes and in long-term maintenance and prevention of relapse (Cole & Davis, 1969; Davis et al., 1989; Kane, 1992). Across many studies, positive symptoms improved in about 70 percent of patients, compared with only 25 percent improvement in placebo groups (Kane, 1989; Kane & Marder, 1993). Their common mechanism of action is by blocking dopamine D, receptors, and their therapeutic effects are presumably due to D, blockade in the mesolimbic system (Dixon et al., 1995). For acute symptom episodes, treatment recom- mendations call for dosages of antipsychotic medication in the range of 300 to 1,000 "chlor@omazine equivalents"14 per day (Lehman & Steinwachs, 1998b). Among patients discharged from inpatient units whose dosage fell outside of this range, minority patients often are much more likely than Caucasian patients to be on a higher dose (> 1,000 chlorpromazine equivalents) (Lehman & Steinwachs, 1998b). Such dosing patterns run counter to evidence that a higher proportion of minority patients, because of lower rates of drug metabolism, may require lower doses of antipsychotics. Dosage studies have found that moderate levels (300 to 750 chlorpromazine equivalents daily for acute episodes, 300 to 600 for maintenance, although many people require less than 300) are more effective for positive symptom reduction over the long run than very high ("loading"), intermittent, or very low doses (Donlon et al., 1978, 1980; Neborsky et al., 1981; Baldessarini et al., 1990; Levinson et al., 1990; Van Putten et al., 1990,1992; Rifkin et al., 1991). Very low I4 A chlorpromazine equivalent is a measure in milligrams of antipsychotic medication doses indexed to the potency of a standard dosage of chlorpromazine, one of the earliest, most widely used antipsychotic medications. 280 and intermittent dosing substantially increases the risk of relapse, while rapid loading and very high doses greatly increase adverse effects (Davis et al., 1989), although medication programs must be tailored to individual needs. On conventional neuroleptics, patients experience symptom reduction over the first 5 to 10 weeks of treatment, with more gradual improvement sometimes continuing for more than double that time (Baldessarini et al., 1990). The older medications are occasionally found to reduce some negative symptoms as well, although it is impossible to tell from existing research if this is a primary or secondary effect of reduced positive symptoms (Davis et al., 1989; Cassens et al., 1990). Apart from their minimal effects on negative symptoms, the greatest problem with conventional neuroleptic medications is their pervasive, uncomfortable, and sometimes disabling and dangerous side effects. The spectrum of side effects is broad (Davis et al., 1989; Casey, 1997), yet the most common and troubling are extrapyramidal effects such as acute dystonia, parkinsonism, and tardive dyskinesia (Chakos et al., 1996; Yuen et al., 1996; Trugman, 1998) andakathisia (Kane, 1985).15 Side effects are evident in an estimated 40 percent of patients, but .pinpointing their prevalence is complicated by the vagaries of diagnosis, length of prescription and observation, and variability across individuals and medications. Rare side effects (seizures, paradoxical exacerbation of psychotic symptoms, neuroleptic malignant syndrome) also can be devastating. Acute dystonia, parkinsonism, dyskinesias, and akathisia are usually treated by lowering the doses of neuroleptics and/or using adjunctive anticholinergic, antiparkinsonian medications (e.g., benztropine). Because these side effects can be mistaken for core psychotic symptoms, the neuroleptic dose is often increased, rather than decreased, exacerbating the side I5 Acute dystonia is involuntary muscle spasms resulting in abnormal and usually painful body positions. Parkinsonism is defined by tremors, muscle rigidity, and stuporous appearance. Dyskinesias are involuntary repetitive movements, often of the mouth, face, or hands, and akathisia is painful muscular restless- ness requiring the person to move constantly. Adults and Mental Health effects. Many other side effects such as attention and vigilance problems, sleepiness, blurry vision, dry mouth, and constipation are worse in the initial weeks of treatment and usually taper off as a person adjusts to the medication. However, the discomfort and disability of the initial weeks are intolerably disruptive to some individuals. Dosages can be individualized to minimize side effects while maximizing benefit. Efficacy data on the newer antipsychotics indicate that they are as efficacious as the older agents at reducing positive symptoms and carry fewer side effects. They also offer important additional advantages for some who have had treatment-resistant schizophrenia (Kane, 1996, 1997; Vanelle, 1997; van OS et al., 1997; Andersson et al., 1998). The prototype of the newer medications, clozapine, has been found effective for about 30 to 50 percent of treatment-resistant patients (Kane & Marder, 1993; Lieberman et al., 1994; Buchanan, 1995; Kane & McGlashan, 1995; Kane, 1996), as well as for patients who have responded to previous medications. Clozapine also seems to help secondary depression and anxiety, and perhaps the negative symptoms of schizophrenia (Buchanan, 1995). Clozapine not only has a very low incidence of tardive dyskinesia (Barnes & McPhillips, 1998) but may also show some promise as its treatment (Walters et al., 1997). However, the use of clozapine was constrained for many years in the United States because of findings that in about 1 percent of patients it causes a potentially fatal blood condition: agranulocytosis, a loss of white blood cells that fight infection. Because agranulocytosis is reversible if detected early, frequent (weekly) blood monitoring is critical (Lamarque, 1996; Meltzer, 1997). Although effective safeguards exist, use of clozapine tends to be limited to those who are unresponsive to, or cannot tolerate, other antipsychotics. The Veterans' Administration sponsored the largest cost-effectiveness study to date of clozapine, comparing it to haloperidol. Studies by Rosenheck and his collaborators (1997, 1998b, 1999) replicated previous findings that clozapine was more effective than haloperidol in treating positive and negative symptoms and had fewer extrapyramidal side effects. In addition to its direct 281 Mental Health: A Report of the Surgeon General pharmacologic effect, the investigators found that clozapine enhances participation in psychosocial treatments, which augments its overall clinical effectiveness (Rosenheck et al., 1998b). Savings associated with use of clozapine were particularly significant among study participants who had averaged 2 15 inpatient hospital days in the year prior to the study (Rosenheck et al., 19981;). Increasing numbers of patients with schizophrenia receive newer agents like risperidone (Smith et al., 1996a; Foster & Goa, 1998), olanzapine (Bymaster et al., 1997), and quetiapine (Wetzel et al., 1995; Gunasekara & Spencer, 1998). They have replaced the older antipsychotics in many cases because they cause fewer side effects at therapeutic levels (Umbricht & Kane, 1995) and do not require clozapine's close monitoring. Their effects on negative schizophrenia symptoms are currently being evahtated and hold some promise, as do their effects on some cognitive dysfunctions (Gallhofer et al., 1996; Green et al., 1997; Kern et al., 1998). Furthermore, current cost analyses find these newer medications at least cost-neutral and sometimes more cost-effective in the long run than older agents, despite being more expensive per pill (Loebel et al., 1998). Thus, as a whole, there is evidence that the newer antipsychotics are more clinically advantageous than the older ones due to the combination of their effective treatment of positive (and perhaps negative) symptoms, their treatment of ancillary symptoms such as anxiety and depression, and their more favorable side effect profile (Liebetman, 1993, 1996; Fleischhacker & Hummer, 1997; Shore, 1998). Having fewer side effects generally results in better compliance with the medication, although atypical side effects can include sedation, weight gain, sexual dysfunction, and other dose-related discomforts (Casey, 1997; Hasan & Buckley, 1998). Although the newer agents have less adverse impact on fecundity, so that more women with schizophrenia can conceive, there are very little data to address the impact of treatment on pregnancy and lactation. While it is not clear whether the newer medications directly lessen the functional disabilities that usually accompany schizophrenia, they may Growing awareness that ethnicity and culture influence patients' response to medications has catapulted to prominence the field of ethnopharmacology. In the past decade, studies have demonstrated that psychiatric medications interact with patient ethnicity in multiple ways, with response to the same medication and dose varying by patient ethnicity (Frackiewicz et al., 1997). For example, due to racial and ethnic variation in pharmacokinetics, Asians and Hispanics with schizophrenia may require lower doses of antipsychotics than Caucasians to achieve the same blood levels (Collazo et al., 1996; Ramirez, 1996; Ruiz et al., 1996). Pharmacokinetics and pharrnacodynamics also vary across other ethnic group~.`~ Racial and ethnic variation likely stem from a combination of genetic and psychosocial factors, such as diet and health behaviors (Lin et al., 1995). 282 At the same time, it is possible that the documented medication differences are the result of underlying biological mechanisms of mental illness related to ethnicity, culture, and gender variations. Additionally, the effects of psychotropic medications may be interpreted differently by culture (Lewis et al., 1980). Although knowledge in these areas is incomplete, it is important to consider cultural patterns in dosing decisions and medication management, as well as risks of side effects and tardive dyskinesia. Furthermore, studies suggest that medication differences among African American people diagnosed with schizophrenia may reflect clinician biases in diagnosis and prescription practices more than differences in I6 For Caucasian, Hispanic, Asian, Africian-Americans varia- tions, see Frackiewicz et al., 1997; Chinese-Jam et al., 1992; black, white, Chinese, Mexican American-Lam et al., 1995; Lin et al., 1995). improve a person's quality of life (Lehman, 1996) and responsiveness to psychosocial, rehabilitation, and therapeutic interventions (Buckley, 1997). Effectiveness in real-world settings may be substantially lower than efficacy in clinical trials, possibly due to patient heterogeneity, prescribing practices, and noncompliance (Dixon et al., 1995). f ttmopsychopharmaco/ogy medication metabolism or health behaviors alone (Frackiewicz et al., 1997). psychosocial Treatments Psychosocial treatments are vital complements to medication for individuals with schizophrenia. They help patients maximize functioning and recovery. The PORT treatment recommendations, as noted earlier, stipulate that patients should receive pharmacotherapy in conjunction with supportive psychotherapy, family treatment, psychosocial rehabilitation and skill development, and vocational rehabilitation (Lehman & Steinwachs, 1998a). In the active phase of illness, medication enables patients to be more receptive to psychosocial treatments. During periods of remission, when maintenance medication is still recommended, psychosocial treatments continue to help patients to improve quality of life. Psychosocial treatments assume even greater importance for patients who do not respond to, cannot tolerate, or refuse to take medications. Several decades ago, psychosocial programs were developed that used little or no medication (Mosher, 1999). For a highly selected group of patients at the beginning of their first acute episode of schizophrenia, these programs were reported effective (Mosher & Menn, 1978). Most patients, however, do not meet the selection criteria employed in this study. Few such programs are currently operating (Mosher, 1999), and treatment with antipsychotic medication is recommended in conjunction with psychosocial treatments (Lehman & Steinwachs, 1998a). Psychotherapy Outcomes of individual and group therapies have been studied for people with schizophrenia, although not extensively and not in relation to current managed care practices. Overall, it is clear that individual and group therapies that focus on practical life problems associated with schizophrenia (e.g., life skills training) are superior to psychodynamically oriented therapies (Scott & Dixon, 1995a). Psychodynamically oriented therapies are considered to be potentially harmful; therefore, their use is not recommended (Lehman, Adults and Mental Health 1997). Individual, group, or famiiy therapies that combine support, education, and behavioral and cognitive skills, and that address specific challenges, can help clients cope with their illness and improve their functioning, quality of life, and degree of social integration. However, the optimum length of therapy seems to be longer than that afforded by "brief therapy" (Gunderson et al., 1984; Stanton et al., 1984; Hogarty et al., 1997). Additionally, certain targeted therapeutic interventions may be useful in addressing specific symptoms (Drury et al., 1996; Jensen & Kane, 1996). Certain subgroups of clients- appear to find different types of therapy more or less useful than others (Scott & Dixon, 1995a). Family Interventions Several professionally operated family intervention programs have been developed to help the family member with severe mental illness (e.g., Hogarty et al., 1987; Cazzullo et al., 1989; Mari & Streiner, 1994; McFarlane, 1997). Randomized trials have been conducted for interventions that educate families about schizophrenia, provide support and crisis intervention, and offer training in effective problem solving and communication. These interventions have strongly and consistently demonstrated their value in preventing or delaying symptom relapse and appear to improve the patient's overall functioning and family well-being (Goldstein et al., 1978; Falloon et al., 1985; Strachan, 1986; Lam, 1991; Tarrier et al., 1994; Goldstein 1995a; Penn & Mueser, 1996). Research has suggested that groups of multiple families are more effective and less expensive than individual family interventions (McFarlane et al., 1995). Incorporating family religious and ethnic background may prove useful in family interventions (Guamaccia et al., 1992). Family self- help groups are discussed subsequently in this chapter. Psychosocial Rehabilitation and Skills Development Psychosocial skills training strives to teach clients verbal and nonverbal interpersonal skills and competencies to live successfully in community settings. Skills or tasks are divided into small, simple behavioral elements that the client then learns, 283 Mental Health: A Report of the Surgeon General practices, and puts together. Currently, there is a growing addition of cognitive skill remediation to rehabilitation programs that have focused on social skills training (Bellack et al., 1989; Bellack & Mueser, 1993; Scott & Dixon, 1995a). As one example of the scope of such programs, the program examined by Liberman and co-workers (1998) focused on four skill areas: medication management, symptommanagement, recreation for leisure, and basic conversation skills. Each area was addressed through concrete topics, with the basic conversation skills module, for example, consisting of active listening skills, initiating conversations, maintaining conversations, terminating conversations, and putting it all together. The evolution of psychosocial skills training is important yet incomplete. A review in the mid-1990s concluded that its overall impact on social, cognitive, or vocational functioning is modest, and it remains unclear whether these gains are maintained after the training is over and can be used in real-life situations (Scott & Dixon, 1995a). However, a more recent study found greater independent living skills among clients who had received skills training during a 2-year followup of everyday community functioning (Liberman et al., 1998). Several others agree that skills training is effective for specific behavioral outcomes (Marder et al., 1996; Penn & Mueser, 1996). Specific symptom profiles may also influence how effective skills training is for a given person (Kopelowicz et al., 1997). Furthermore, Medalia and coworkers (1998) report recent success adapting cognitive rehabilitation techniques, originally developed for survivors of serious head injuries, for people with schizophrenia, but long-term effects and generalizability have not been determined. This exemplifies both the progress and the need for further refinement of this intervention (Smith et al., 1996b). 284 In a recent review article, a team of researchers concluded that the most potent rehabilitation programs (1) establish direct, behavioral goals; (2) are oriented to specific effects on related outcomes; (3) focus on long- term interventions; (4) occur within or close to clients' naturally preferred settings; and (5) combine skills training with an array of social and environmental supports. They also note that most programs do not contain all of these elements, but most are much improved over previous eras (Mueser et al., 1997b). There are a host of multi-component psychosocial rehabilitation services that combine pharmacologic treatment, independent living and social skills training, psychological support to clients and their families, housing, vocational rehabilitation, social support and network enhancement, and access to leisure activities (World Health Organization [WHO], 1997). These are discussed in the later section on service delivery. Coping and Self-Monitoring An important goal of recovery and the consumer movement is to enable patients themselves to participate more actively in their own treatment. While complete remission of all symptoms is unlikely for the majority, most can and do learn skills and techniques over time that they can use to manage distressing symptoms and the effects of the illness. Often, better skills in coping and monitoring one's own health status occurs simply through experience. However, the growth of self-help and the development of recovery models for serious mental illnesses has spawned interventions that purposefully teach and encourage active coping on the part of clients and their families. Controlled research is sparse (Penn & Mueser, 1996), except in the area of relapse prevention. For example, some people find it very useful to pay attention to their own warning signs of relapse or symptom exacerbation, so that additional coping practices, supports, or interventions can be put into place. Norman and Malla (1995) conclude that there is not a standardized set of signs that predict relapse, but that some individuals have and get to know their own reasonably consistent patterns. Herz and Lamberti (1995) agree that many people experience predictable signs, although whether a relapse occnrs depends on many factors besides the signs themselves. Therefore, the risk and magnitude of relapse can be reduced by monitoring early symptoms and intervening when they emerge (Herz & Larnberti, 1995). Watching for such signs is recommended for consumers, family members, and clinicians (Jorgensen, 1998). Specific training programs for teaching individuals with schizophrenia to identify the warning signs of relapse and to develop relapse prevention plans have been shown to be effective (Liberman et al., 1998). Vocational Rehabilitation Unemployment is pervasive among people with serious and persistent mental illness. Employment is valued highly by the general public and by people with schizophrenia alike because it generates financial independence, social status, contact with other people, structured time and goals, and opportunities for personal achievement and community contribution (Mowbray et al., 1997). These attributes of employment, combined with the self-esteem and personal purpose that it engenders, make vocational rehabilitation a prominent facet of treatment for serious mental illnesses. Vocational rehabilitation is especially important because early adult onset often disrupts education and employment history. Controlled studies of vocational rehabilitation interventions have shown mixed results (Lehman, 1995, 1998; Cook & Jonikas, 1996). Although such programs do seem to increase work-related activities while people are engaged in them, the gains do not seem to be translated into more independent employment once services cease. This has led to the conclusion that ongoing support is needed for many individuals with schizophrenia who wish to work in competitive employment (Wehman, 1988). Recent controlled studies have shown the effectiveness of this newer type of so-called supported employment models, which emphasize rapid placement in a real job setting and strong support from a job coach to learn, adapt, and maintain the position (Drake et al., 1994, 1996; Bond et al., 1997). These models, which are growing in use, strike a dynamic balance between being supportive yet challenging in order to avoid clients' dependency and maximize their growth (Mowbray et al., 1997). As vocational rehabilitation has moved away from sheltered workshops and toward supported employment models, the Americans With Disabilities Act of 1990 has helped to open jobs and educate employers about reasonable accommodations for people with psychiatric Adults and Mental Health disabilities (Mechanic, 1998; Scheid, 1998). Additionally, innovations like client-run and client- owned vocational programs and independent businesses have begun to be developed on a larger scale (Rowland et al., 1993; Miller & Miller, 1997). These innovations are part of a larger movement of consumer involvement in the provision of services for people with mental illness (see Chapter 2). Service Delivery The organization of services for adults with severe mental disorders is the linchpi#n of effective treatment. Since many mental disorders are best treated by a constellation of medical and psychosocial services, it is not just the services in isolation, but the delivery system as a whole, that dictates the outcome of treatment (Goldman, 1998b). Access to a delivery system is critical for individuals with severe mental illness not only for treatment of symptoms but also to achieve a measure of community participation. Among the fundamental elements of effective service delivery are integrated community-based services, continuity of providers and treatments, and culturally sensitive and high-quality, empowering services (Mowbray et al., 1997; Lehman & Steinwachs, 1998a). Effective service delivery also requires support from the social welfare system in the form of housing, job opportunities, welfare, and transportation (Goldman, 1998a), issues that are discussed in the final section of this chapter. What models of service delivery are most effective? This section strives to answer this question by focusing on models of service delivery for individuals with severe and persistent mental disorders, including severe depression and bipolar disorder, as well as schizophrenia. Although adults with mental illness in midlife confront many service delivery issues-for example, the problem of proper identification and treatment of depression in primary care settings-those who are most disabled by mental disorders encounter special service delivery problems. The focus on the most disabled is warranted for three reasons: (1) Society has a special obligation to those who are most impaired and consequently are the "least 285 Mental Health: A Report of the Surgeon General well off' (Callahan, 1999; Goldman, 1999; Rosenheck, 1999); (2) the body of research on mental health services delivery for this population is extensive; and (3) existing service systems are seriously deficient. The deficiency of existing service systems is best documented for individuals with schizophrenia. The majority of people with schizophrenia do not receive the treatment and support they need, according to a groundbreaking finding of PORT (Lehman & Steinwachs, 1998a). PORT, as noted earlier, developed a series of basic treatment recommendations after reviewing hundreds of outcome studies. It proceeded to determine whether these recommendations were being met by examining current patterns of care in two states in the United States. Among those with severe mental disorders, any number of special populations might have been the focus for this section. These special populations have severe mental disorders and HIV/AIDS (Coumos & McKinnon, 1997); are involved in the criminal justice system(Abram& Teplin, 1991; CMHS, 1995;Lamb & Weinberger, 1998); or have somatic health problems (Berren et al., 1994; Felker et al., 1996; Brown, 1997). Although some of what follows may be relevant to the unique needs of each of these groups, the evidence base is less well developed. The remainder of this section focuses on case management, assertive community treatment, psychosocial rehabilitation services, inpatient hospitalization and community alternatives for crisis care, and combined treatment for people with the dual diagnosis of substance abuse and severe mental illness. Case Management The purpose of case management is to coordinate service delivery and to ensure continuity and integration of services. Case managers engage in a variety of activities, ranging from simple roles in locating services to more intensive roles in rehabilitation and clinical care. The less intensive models of case management seem to increase clients' links to, and use of, other mental health services at relatively modest cost. More intensive models also appear to help clients to increase daily-task functioning, residential stability, and independence, and to reduce their hospitalizations (Borland et al., 1989; Mueser et al., 1998a). Overall, models that focus on specific outcomes are more effective than those with global, vaguely defined goals (Attkisson et al., 1992). More programs are beginning to employ mental health consumers as case managers in their multidisciplinary staff. Results have been positive, but the programs are challenging to implement and require ongoing supervision as do all case management programs (Mowbray et al., 1996). In a controlled study, clients served by case management'teams, along with consumers as peer-specialists, displayed greater gains in several areas of quality of life and greater reductions in major life problems, as compared with two comparison groups of clients served by case management teams without peer-specialists (Felton et al., 1995). One randomized clinical trial compared case management teams wholly staffed by consumers versus case management teams staffed by nonconsumers. The study (at 1 -year and 2-year followup) found that clients improved equally well with consumer and nonconsumer case managers (Solomon & Draine, 1995). In this series of studies, the case management teams were part of an intensive program of services known as assertive community treatment. Assertive Community Treatment Assertive community treatment is an intensive approach to the treatment of people with serious mental illnesses that relies on provision of a comprehensive array of services in the community. The model originated in the late 1970s with the Program of Assertive Community Treatment in Madison, Wisconsin (Stein & Test, 1980). Fueled by deinstitutionalization and the vital need for cornmunity- based services, a multidisciplinary team serving psychiatric inpatients adapted its role to patients in the community. For this reason, assertive community treatment often is likened to a "hospital without walls." The hallmark of assertive community treatment is an interdisciplinary team of usually 10 to 12 professionals, including case managers, a psychiatrist, several nurses and social workers, vocational 286 specialists, and more recently includes substance abuse treatment specialists and peer specialists. Assertive community treatment also possesses these features: coverage 24 hours, 7 days per week; comprehensive treatment planning; ongoing responsibility; staff continuity; and small caseloads, most commonly with 1 staff member for every 10 clients (Scott & Dixon, 1995b). Because of the intensity of services, assertive community treatment is most cost-effective when targeted to individuals with the greatest service need, particularly those with a history of multiple hospitalizations (Scott & Dixon, 1995b; Lehman & Steinwachs et al., 1998a). Randomized controlled trials have demonstrated that assertive comtintnity treatment and similar models of intensive case management substantially reduce inpatient service use, promote continuity of outpatient care, and increase community tenure and residence stability for people with serious mental illnesses (Stein & Test, 1980; Bond et al., 1995; Lehman, 1998; Mueser et al., 1998a). Among the beneficiaries are homeless individuals and those with substance abuse problems and mental disorders. Evidence of effectiveness is weaker for other outcomes (e.g., social integration, employment) and for amelioration of substance abuse problems associated with schizophrenia, particularly when combined treatment is not offered (Mueser et al., 1998b). Assertive community treatment models are generally popular with clients (Stein & Test, 1980) and family members (Flynn, 1998). There also are some preliminary results suggesting that employing peer (i.e., consumer) or family outreach workers on the multidisciplinary assertive community treatment teams increases positive outcomes (Dixon et a1.,1997, 1998) and creates more positive attitudes among team members toward people with mental illnesses. Psychosocial Rehabilitation Services As noted above, there are a range of multicomponent programs called psychosocial rehabilitation services that are distinct from the single component skills training interventions described in the section on interventions for schizophrenia. These psychosocial Adults and Mental Health rehabilitation programs combine pharmacologic treatment, independent living and social skills training, psychological support to clients and their families, housing, vocational rehabilitation, social support and network enhancement, and access to leisure activities (WHO, 1997). Randomized clinical trials have shown that psychosocial rehabilitation recipients experience fewer and shorter hospitalizations than comparison groups in traditional outpatient treatment (Dincin & Witheridge, 1982; Bell & Ryan, 1984). In addition, recipients are more likely to be employed (Bond & Dincin, 1986). Cook & Jon&as (1996) review the outcomes of a wide range of psychosocial rehabilitation programs, including Fairweather lodges (Fairweather et al., 1969) and psychosocial clubhouses (Dincin, 1975), some of which were demonstrated as effective 20 and 30 years ago but have not been widely implemented. Inpatient Hospitalization and Community Alternatives for Crisis Care The role of psychiatric hospitalization has changed greatly over recent decades, stemming from the recognition of poor and occasionally abusive conditions, excessive patient dependency, and patients' loss of connection to the community (Wing, 1962; Gruenberg, 1974). More recent evolution in hospitalization traces to changes in the financing of care and the introduction of new medications (Appleby et al., 1993; Bezold et al., 1996). Community-based alternatives for crisis care services began to flourish in lieu of hospitalization (Fenton et al., 1998; Mosher, 1999). The new priorities of psychiatric hospitalization focus on ameliorating the risk of danger to self or others in those circumstances in which dangerous behavior is associated with mental disorder, and the rapid return of patients to the community (Sederer & Dickey, 1995). Inpatient units are seen as short-term intensive settings to contain and resolve crises that cannot be resolved in the community. For this reason, inpatients are commonly suicidal, homicidal, or decompensating (experiencing the rapid return of severe symptoms) to the degree that they cannot care for themselves or respond to community-based 287 Mental Health: A Report of the Surgeon General services. Inpatient services therefore emphasize safety measures, crisis intervention, acute medication and re- evaluation of ongoing medications, and (re)establishing the client's links to other supports and services (Sederer & Dickey, 1997). Mobile crisis services have developed in many urban areas to prevent hospitalization (Zealberg, 1997), as have day hospital programs. With crisis services, a multidisciplinary team comes directly to the aid of the client in the community to provide immediate evaluation and services. This new conceptualization of inpatient care and crisis intervention services minimizes the use of hospital resources; however, welI- coordinated teams, sufficient community programs, and ready linkages are not widely available, particularly in rural and frontier areas. African Americans and Native Americans are overrepresented in psychiatric inpatient units in relation to their representation in the population (Snowden & Cheung, 1990; Snowden, in press). Overrepresentation is found in hospitals of all types except private psychiatric hospitals. The reasons for this disparity, while not completely understood, may reflect a mix of limited access to outpatient services and differences in cultural patterns of help-seeking behavior and overt discriminatory practices. Cost, disinclination to seek help, and lack of community support may contribute to patients' delay in seeking treatment until symptoms are severe enough to warrant inpatient care. Clinician bias may also be at work. Cultural differences in treatment seeking and treatment utilization are discussed in greater detail in Chapter 2. Services for Substance Abuse and Severe Mental Illness As many as hal'of people with serious mental illnesses develop alcohol or other drug abuse problems at some point in their lives (Mueser et al., 1990; Regier et al., 1993, Drake & Osher, 1997). Theories to explain comorbidity (also known as dual diagnosis) range from genetic to psychosocial, but empirical support for any one theory is inconclusive (Kosten & Ziedonis, 1997; Mueser et al., 1998b). In short, the cause of such widespread comorbidity is unknown. Comorbidity worsens clinical course and outcomes for individuals with mental disorders. It is associated with symptom exacerbation, treatment noncompliance, more frequent hospitalization, greater depression and likelihood of suicide, incarceration, family friction, and high services, use, and cost (Bartels et al., 1995; Mueser et al., 1997a; Bellack& Gearon, 1998; Havassy & Ams, 1998). Furthermore, patients may be jeopardized by the consequences of substance abuse, namely, increased risk of violence, HIV infection, and alcohol-related disorders (IOM,,1995). In light of the extent of mental disorder and substance abuse comorbidity, substance abuse treatment is a critical element of treatment for people with mental disorders. Likewise, treatment of symptoms and signs of mental disorders is a critical element of recovery from substance abuse. Yet decades of treating comorbidity through separate mental health and substance abuse service systems proved ineffective (Ridgely et al., 1990; Mueser et al., 1997a). Research amassed over the past 10 years supports a shift to treatment that combines interventions directed simultaneously to both conditions-that is, severe mental illness and substance abuse-by the same group of providers (Kosten & Ziedonis, 1997; for an example, see Mowbray et al. 1995), but access to such treatment remains limited. Most successful models of combined treatment include case management, group interventions (such as persuasion groups and social skills training), and assertive outreach to bring people into treatment (Mueser et al., 1997a). They typically take into account the cognitive and motivational deficits that characterize serious mental illnesses (Bellack & Gearon, 1998), although many providers still need to be educated (Kirchner et al., 1998). Combined treatment is effective at engaging people with both diagnoses in outpatient services, maintaining continuity and consistency of care, reducing hospitalization, and decreasing substance abuse, while at the same time improving social functioning (Miner et al., 1997; Mueser et al., 1997a). Although there is little evidence for any particular approach to combining treatments for comorbidity (Ley et al., 1999), recent research suggests that services 288 incorporating behavioral (motivational) approaches to substance abuse treatment are superior to traditional 1Zstep approaches (e.g., Alcoholics Anonymous) with this population of clients (Drake et al., 1998). This may be because the more structured behavioral methods better accommodate the cognitive difficulties that accompany schizophrenia. Others, however, find self- help interventions tailored to dual-diagnosis clients quite useful (Vogel et al., 1998). Current research also is seeking to tailor combined treatment to the needs and preferences of specific patient subgroups, such as men, women (Alexander, 1996), people with addiction to multiple substances (as opposed to alcohol addiction alone), and people with histories of physical and psychological trauma (Mueser et al., 1997a). Other Services And Stipports Comprehensive care for adults with severe and persistent mental disorders also includes ancillary services to deal with such social consequences as family disruption and loss of employment and housing. Ancillary services are those above and beyond symptom management and rehabilitation. They include consumer self-help and advocacy, consumer-operated programs, family self-help and advocacy, and human services. The chapter concludes with a brief review of . evidence about integrating the mental health service system and the human services system of which it is Pm* A driving force for many of these services is to redress the stigma associated with severe and persistent mental illness. Stereotypes and ignorance are omnipresent (Robert Wood Johnson Foundation, 1990; Wahl et al., 1995). They lead many people to avoid living, socializing, or working with, renting to, or employing people with severe mental disorders (Levey et al., 1995). Stigma reduces consumers' access to resources and opportunities (e.g., housing, jobs), fuels isolation and hopelessness, and leads to outright discrimination and abuse. Thus, overcoming stigma represents yet another challenge of coping with severe and persistent mental illness and of working toward recovery (Wahl & Harman, 1989; Reidy, 1993). Adults and Mental Health Consumer Self-Help Self-help groups are geared for mutual support, information, and growth. Self-help is based on the premise that people with a shared condition who come together can help themselves and each other to cope, with the two-way interaction of giving and receiving help considered advantageous. Self-help groups are peer led rather than professionally led. Organized self-help has a long history, with an estimated 2 to 3 percent of the general population involved in some self-help,group at any one time (Borkman, 199 1,1997). Over the past several decades, people with serious mental illnesses have formed mutual assistance organizations to aid each other and to combat stigma. These range from small groups held in a member's home to freestanding nonprofit organizations with paid staff and a range of programs. In general, however, the self-help empowerment trend does not appear to have reached the African-American, Native American, HispaniclLatino, and Asian- American populations. As the number and variety of self-help groups has grown, so too has social science research on their benefits (Borkman, 1991). In general, participation in self-help groups has been found to lessen feelings of isolation, increase practical knowledge, and sustain coping efforts (Powell, 1994; Kurtz, 1997). Similarly, for people with schizophrenia or other mental illnesses, participation in self-help groups increases knowledge and enhances coping (Borkman, 1997; Trainor et al., 1997). Various orientations include replacing self-defeating thoughts and actions with wellness-promoting activities (Murray, 1996), improved vocational involvement (Kaufmann, 1995), social support and shared problem solving (Mowbray & Tan, 1993), and crisis respite (Mead, 1997). Such orientations are thought to contribute greatly to increased coping, empowerment, and realistic hope for the future. Additionally, some groups are tailored to meet the needs of consumers who are members of sexual minority groups, men, or those who have also have substance disorders (Noordsy et al., 1996; Vogel et al., 1998). 289 Mental Health: A Report of the Surgeon General A number of controlled studies have demonstrated benefits for consumers participating in self-help. One study of the self-help group Recovery, Inc., found that leaders and members who were surveyed retrospectively reported fewer symptoms and fewer hospitalizations after joining the group than before. It also found the leaders' reports of their psychological well-being to have been comparable to community controls (Galanter, 1988). In another study of 115 former mental patients, Luke (1989) found that those who continued to attend self-help meetings at least once per month over a period of 10 months were more likely to show improvement on psychological, interpersonal, or community adjustment measures than those who attended less frequently. Through a case study, which included focus groups and interviews, Lieberman and colleagues (1991) found a consumer- run support group to improve members' self-confidence and self-esteem and to lead to fewer hospitalizations. In a survey of mental health self-help group leaders in New York State, respondents identified three positive outcomes that were directly related to their self-help group membership: greater self-esteem, more hopefulness about the future, and a greater sense of well-being. According to survey respondents,' all of these positive changes led to fewer hospitalizations (Carpinello & Knight, 1993). A study of six self-help programs in several parts of the United States also reported on consumers' perceptions of self-help programs (Chamberlin & Rogers, 1990). Although not nationally representative, consumers in this study expressed satisfaction with their self-help program, at which they spent an average of 15 hours per week. They reported that their participation helped them to solve problems and feel more in control of their lives. Consumer-Operated Programs Propelled by the growing consumer movement, consumer self-help extends beyond self-help groups. It also encompasses consumer-operated programs, such as drop-in centers, case management programs, outreach programs, businesses, employment and housing programs, and crisis services, among others (Long & Van Tosh, 1988; National Resource Center on Homelessness and Mental Illness, 1989; Van Tosh & de1 Vecchio, in press). Drop-in centers are places for obtaining social support and assistance with problems, without professionals in attendance. The rationale for cons,umer roles in service delivery is that consumer staff, clients, and the mental health system can benefit. Consumer staff are thought to gain meaningful work, to serve as role models for clients, and to enhance the sensitivity of the service system to the needs of people with mental disorders. Clients are thought to gain from being served by staff who are more,empathic and more capable of engaging them in mental health services (Mowbray et al., 1996). An appreciation for the potential value of peer support stimulated the Community Support Program of the National Institute of Mental Health to fund local consumer-operated Services Demonstration Projects from 1988 to 1991. These demonstration projects also resulted in the increasing involvement of mental health consumers in the development and provision of peer support, involvement in traditional service roles, evaluation of services, and advocacy. A variety of consumer-operated programs were developed, staffed, and evaluated as states began to fund locally based initiatives (Nikkel et al., 1992; Kaufmann et al., 1993; Mowbray & Tan, 1993). Most evaluations of drop-in centers were in the form of process evaluations that generally found consumers to be satisfied or that programs met their objectives (Kaufmann et al., 1993; Mowbray & Tan, 1993). In 1998, the Federal Center for Mental Health Services initiated a multisite evaluation study of consumer-operated services across the United States (see http://www.cstprogrum.edu). In addition to ongoing evaluations, there are several published studies of client outcomes withconsumer-run programs, although the research base is modest. Several studies, noted earlier, found improved outcomes with consumer self-help programs. Another study evaluated a consumer-run case management program. It compared the effectiveness of a case management program staffed by consumers with a similar program staffed by nonconsumers. Case managers in both programs, which were part of assertive community treatment, performed brokering, assistance, and support functions, rather than 290 clinical management and treatment, The randomized trial found that clients assigned to either case management program fared equally well in clinical, social, and quality of life outcomes (Solomon & Draine, 1995). Recently, peer specialists were added to the recommended staffing for assertive community treatment teams; peer specialists provide expertise and consultation to the entire treatment team (Allness & Knoedler, 1999). Consumers also may be employed as staff in more traditional mental health services operated by nonconsumer professionals. Consumer positions most commonly include peer counselors, peer job coaches, case managers, staff for drop-in centers, outreach workers, and housing assistants. In a survey of 400 agencies offering supported housing to people with severe mental illness, 38 percent employed mental health consumers as paid staff (Besio & Mahler, 1993). As noted previously, consumers in the role of peer- specialists integrated into case management teams led to improved patient outcomes (Felton et al., 1995). Consumer Advocacy The mental health field has witnessed great changes in policy development, with consumers playing increasingly visible roles in advocacy. Consumer contribution to policy was initially encouraged by Federal laws mandating consumer participation in planning, oversight, and advocacy activities at the state level (Chamberlin & Rogers, 1990; Van Tosh & de1 Vecchio, in press). With the establishment of state mental health planning councils and local mental health advisory boards and committees, consumers increasingly have become equal partners in a process often reserved for seasoned policymakers. In addition, consumers have become active participants in the process to reform health and mental health care financing. For example, the Managed Care Consortium was formed in 1995 to create educational opportunities for a host of advocacy organizations across the United States. With funding support from the federal Center for Mental Health Services, this consortium encouraged teams to form in each state to influence the design of managed care programs. Consumers also have entered the halls of many public sector bureaucracies, serving in leadership roles in Offices of Consumer Affairs and interfacing withother government departments. In what was once believed to be the last bastion for consumer integration, consumers are now seen as critical stakeholders and valued resources in the policy process. Consumers also have become advocates in the communities where they live and work. Advocacy enables consumer groups to shape policy at the local level, where a direct impact can be felt. At the local level, advocacy strives to improve access to, or quality of, needed services and to saunter employment and housing discrimination. It can also be helpful in mobilizing resources to build and sustain programs. The National Mental Health Association (NMHA. available at http://www.nmha.org), comprising more than 340 affiliates nationwide, works with and supports the efforts of consumers to achieve advocacy goals. 291 Family Self-Help Family members of people with severe mental illnesses also encounter ignorance and stigma. Stigma translates into avoiding or blaming family members (Phelan et al., 1998; Wahl & Harman, 1989). Families also are under a great deal of stress associated with care giving and obtaining resources for their mentally ill members. Families--especially parents, siblings, adult children, and spouses--often provide housing, food, transportation, encouragement, and practical assistance. At the same time, schizophrenia and other mental disorders strain family ties. Symptoms of mental disorders may be disruptive and troubling, especially when they flare up. Even when there are no problems, living together can be stressful-interpersonally, socially, and economically. Parents and their adult children often perceive mental disorders and treatment differently, sometimes disagreeing about the best course of action. Consequently, families too have created support organizations. Some of these are professionally based and facilitated, often as part of a clinic or other treatment program. Others are peer run in the self-help model. Similar to self-help among people with mental illnesses, family self-help can range from small Adults and Mental Health Mental Health: A Report of the Surgeon General supportive groups to large organizations. The National Alliance for the Mentally Ill (NAMI) is the largest such organization. Founded in 1979 in Wisconsin, NAM1 now has 208,000 members nationally. It has more than 1,200 local self-help groups (affiliates) across all 50 states (see http://www.nami.org). While still growing, its members include only a small percentage of the family members of people with mental illnesses in the country (Monking, 1994; Heller et al., 1997a). Family members primarily attend self-help and support groups to receive emotional support and accurate information about mental illness and mental health services (Heller et al., 1997a, 1997b). Participation often leads to better quality of life for the attending family members and also indirectly benefits the member diagnosed as mentally ill (Wahl & Harman, 1989; Monking, 1994). Family self-help groups can result in better communication and interaction among family members (Heller et al., 1997b). Family Advocacy In addition to providing each other with mutual support, families often devote time, energy, and resources for advocacy to improve services and opportunities for their family members with mental disorders. Similar to consumer advocacy,' family advocacy on a local level might include organizing to improve local mental health services, or to redress grievances with service providers. On the national level, consumer groups work to influence legislation and to support research and education initiatives (Wahl & Harman, 1989). Through their advocacy, families have been quite effective in raising their concerns and perspectives to service providers, legislators, and the public. Human Services The clinical symptoms of schizophrenia and other mental disorders are often disruptive and distressing. Their consequences are no less severe-truncated education, unemployment, social isolation, and exclusion from community participation. Facing multiple life stressors, all severe, with a minimum of .resources, people with severe mental illnesses often need a variety of supportive services. Paramount among these are housing, employment and income assistance, and health benefits. Consumers have reported their major needs to include adequate income, meaningful employment, decent and affordable housing, quality health care, and education to increase skills (Ball & Havassy, 1984; Rosnow & Rucker, 1985; Lynch & Kruzich, 1986). Housing Housing ranks as a priority concern of individuals with serious mental illness. Locating affordable, decent, safe housing is often difficult, and out of financial reach. Stigma and discrimination also restrict consumer access to housing. Despite legislation such as the Fair Housing Act, allegations of housing discrimination based on psychiatric disabilities are highly prevalent (U.S. Department of Education, 1998). Landlords and public housing programs are often unwilling to accept tenants with severe mental disorders. In a survey of parents of mentally ill adults, the dearth of decent and affordable housing was a direct barrier to the person moving out of the family home, even when all parties wanted it (Hatfield, 1992). The actual proportion of people with severe mental illnesses who lack affordable and decent housing has not been assessed directly. Yet indirect assessments point to a serious problem, In 1994, the U.S. Department of Housing and Urban Development (HUD) reported that almost half of all very low-income disabled residents-including persons with serious mental illness-have "worst case" needs for housing assistance. Furthermore, it was reported that the majority of these persons often live in the most severely inadequate housing (U.S. Department of Housing and Urban Development, 1994; U.S. Department of Education, 1998). It is estimated that up to one in three individuals who experience homelessness has a mental illness (Federal Interagency Task Force on Homelessness and Mental Illness, 1992). The housing preferences of people with schizophrenia and other serious mental disorders are clear: these individuals strongly desire their own decent living quarters where they have control over who lives 292 with them and how decisions are made (Owen et al., 1996; Schutt & Goldfinger, 1996; Sohng, 1996). In an analysis of 26 consumer preference surveys, Tanzman ( 1993) found that at least 59 percent of those surveyed wanted independent living in a house or apartment. They also preferred to live alone (or with a spouse or partner), yet not with other people with mental disorders. Most also preferred access to mental health and rehabilitation services to support them where they were living. When deinstitutionalization led to the need for more community housing, the residential programs that were developed replicated institutional programs (Carling, 1989). Although residential programs varied in the degree of oversight and services, they generally proved to be ineffective in meeting consumers' needs. Moreover, living in such programs added to stigma. Because of these shortfalls, greater emphasis has been placed on conventional housing supplemented by appropriate assistance tailored to individual need (Srebnik et al., 1995). This new concept, called supported housing, moves away from "placing" clients, grouping clients by disability, staff monopolizing decisionmaking, and use of transitional settings and standardized levels of service (Carling, 1989; Lehman & Newman, 1996). Instead, supported housing focuses on consumers having a permanent home that is integrated socially, is self-chosen, and encourages empowerment and skills development. The services and supports offered are individualized, flexible, and responsive to changing consumer needs. Thus, instead of fitting a person into a housing program "slot," consumers choose their housing, where they receive support services. The level of support is expected to fluctuate over time. With residents living in conventional housing, some of the stigma attached to group homes and residential treatment programs is avoided. Although there are no randomized clinical trials to support the effectiveness of the supported housing approach, consumer advocacy and changes in clinical practice affirm the shift to supported housing. In a quasi-experimental study, an evaluation of the Robert Wood Johnson Foundation Program on Chronic Mental Illness demonstrated the feasibility and modest benefits of the supported housing approach using rental subsidies from HUD (Newman et al., 1994). Consumers experienced better mental health and more self-determination when they lived in adequate housing (Nelson et al., 1998). For example, one study found that personal empowerment and functioning were enhanced, and hospitalization reduced, after 5 months in a supported housing program (McCarthy & Nelson, 1991). Also, resident control over decisions was directly related to satisfaction and empowerment (Seilheimer & Doyal, 19967. Similarly, another study found that having greater choice in housing was associated with greater happiness and life satisfaction (Srebnik et al., 1995). 293 Despite these findings, serious housing problems persist for people with schizophrenia and other mental disorders. Most such individuals are poor and thereby face very limited housing options. Income, Education, and Employment People with severe mental illnesses tend to be poor (Polak & Warner, 1996). Although the reasons are not understood, poverty is a risk factor for some mental disorders, as well as a predictor of poor long-term outcome among people already diagnosed (Cohen, 1993; Rabins et al., 1996; Saraceno & Barbui, 1997). People with serious mental illnesses often become dependent on public assistance shortly after their initial hospitalization (Ho et al., 1997). They rely on government disability-income programs, rent subsidies (Loyd & Tsuang, 1985; Polak & Warner, 1996; Ho et al., 1997), and informal sources of economic support (e.g., living with parents). The unemployment rate among adults with serious and persistent mental disorders hovers at 90 percent (National Institute on Disability and Rehabilitation Research, 1992). Conversely, adequate standards of living and employment are associated with better clinical outcomes and quality of life (Cohen, 1993; Bell & Lysaker, 1997). In a randomized trial of consumers assigned to paid versus unpaid work, paid employment was found to reduce symptoms of schizophrenia (Bell et al., 1996). Moreover, employer accommodations for Adults and Mental Health Mental Health: A Report of the Surgeon General those with psychiatric disabilities appear to be inexpensive. The most frequently requested accommodations focus on orientation and training of supervisors, provision of onsite support, and adaptive work schedules. Such accommodations rarely result in significant cost to the employer (Mancuso, 1990; Fabian et al., 1993). While newer vocational rehabilitation and employment initiatives strive to remedy persistently high levels of unemployment, most consumers find themselves unable to work consistently or at all. This is due not only to active symptoms but also to profound interruptions of education and employment caused by symptom onset and exacerbations, stigma and discrimination, lack of higher education programs for this population, and low-paying menial jobs. When the onset of mental health-problems begins during school-age years, educational systems are often ill prepared. Several studies have identified educational deficits in their clientele, who function in reading and math at a level far below their achieved grades in school (Cook et al., 1987; Cook & Solomon, 1993). Supported education models can provide assistance to consumers with their education (Cook & Solomon, 1993; Hoffman & Mastrianni, 1993; Ryglewicz & Glynn, 1993). One example is Consumers and Alliances United for Supported Education, aconsumer- operated program in Quincy, Massachusetts, that provides a wide range of services to encourage individuals with psychiatric disabilities to enter or reenter college or technical school programs. Services include academic and career counseling, assistance with finding financial aid, study skills, stress control, tutoring/coaching, and assistance with crisis while hospitalized (CMHS, 1996). Consumers lack control over their financial affairs when benefit checks are given directly to care providers for the person's housing and other expenses, or to a legally appointed representative payee (if the person has been deemed unable to manage his/her own finances) (Conrad et al., 1998). Those consumers who manage their own finances usually face such modest monthly budgets that there is no room for error. Funds frequently are depleted before the end of the month. Furthermore, disability payments are sometimes reduced or discontinued when a recipient is working. Since employment is rarely consistent, they need to resume disability benefits. Yet, once they are canceled, government disability benefits can be cumbersome to restart. The Social Security Administration has developed new measures to facilitate reactivation of benefits for individuals who return to work, but they are not yet widely disseminated. In some ways the requirements of Social Security disability benefits and other such programs often act as disincentives to the pursuit of employment (Polak & W+uner, 1996; Priebe et al., 1998). Some people with serious mental illnesses have adequate income or fmancial assistance (Ware & Goldfinger, 1997). Some have affluent families who can subsidize their expenses. Others collect pensions because they were not disabled by their illness until after they had a substantial work history. Finally, some have found well-paying positions through a formal rehabilitation program, a community-based educational or vocational training program, or a supportive employer. 294 Health Coverage Health coverage goes hand in hand with housing and income in determining standards of living for people with serious psychiatric disabilities. Due to their low incomes and the high cost of psychiatric and other health services, most people with schizophrenia and other forms of severe and persistent mental disorders rely on Medicare, Medicaid, and other government programs to cover their therapeutic services, medications, and other health care. When reductions or loss of these benefits curtail access to needed medication or services, clients' health suffers and their use of more expensive emergency services increases (Soumerai et al., 1994). Even when they have access to health insurance coverage, individuals with a mental disorder encounter barriers to procuring that insurance and in receiving general medical care (Druss & Rosenheck 1998). Integrating Service Systems Integrating the range of services needed by individuals with severe and persistent mental disorders has been a vexing problem for decades. The General Accounting Office (1977) criticized the Federal community mental health centers for their failure to meet the multiple needs of individuals with chronic mental illness. The Federal response was to establish a Community Support Program to provide resources and technical assistance to communities to help them in formulating community support systems to integrate the various services provided by fragmented human services agencies (Turner & TenHoor, 1978; Tessler & Goldman, 1982). The limitations of a community support program in dealing with severe and persistent mental illness in major cities, particularly those with high rates of homelessness, prompted the Robert Wood Johnson Foundation to partner with HUD to create the Programon Chronic Mental Illness (Aiken et al., 1986). This program promoted the concept of local mental health authorities as the agencies responsible for integrating all services for individuals with chronic mental illness, including housing opportunities (Shore & Cohen, 1990, 1994). The Robert Wood Johnson Foundation Program on Chronic Mental Illness was initiated in late 1986 and evaluated over a 6-year period (Goldman et al., 1990a, 199Ob, 1994a, 1994b). The evaluation determined that local mental health authorities were established or strengthened in almost all of the nine cities, resulting in measurable increases in organizational centralization and reduced fragmentation of services (Morrissey et al., 1994). Case management services also were expanded, producing greater continuity of care and reductions in family burden (Lehman et al., 1994; Shem et al., 1994; Tessler et al., 1994). Client outcomes, including social functioning and quality of life measures, improved during the demonstration (Lehman et al., 1994; Shem et al., 1994). Yet the time course of most clients' improvement did not coincide with improvements in system integration. This suggested that their improvement could not be attributed to system integration. For a subset of clients, improved client outcomes were due to the benefits of special combined Adults and Mental Health housing and support services. Yet, even for this subset, improvements were related, but not directly attributable, to systems integration (Newman et al., 1994). Evaluators concluded that system integration and traditional case management alone probably were not sufficient to produce optimal social and clinical outcomes (Goldman et al., 1994b; Lehman et al., 1994). They speculated that the availability of rental subsidies and supports or more intensive and higher quality case management services-such as those offered in assertive community treatment-were essential (Ridgely et al., 1996). This set of findings, coincident with the release of the report of the Federal Interagency Task Force on Homelessness and Mental Illness (1992), Ourcasts on Main Street, prompted the development of another demonstration program. Access to Community Care and Effective Services and Supports was launched by the Federal Center for Mental Health Services in 1993 (Randolph et al., 1997). Still in the midst of its evaluation, preliminary findings sustain the benefits of providing assertive community treatment to obtain good clinical and social outcomes. They support the association of better system integration with higher rates of moving individuals with severe mental illness from homelessness into independent housing (Rosenheck et al., 1998a). It remains to be seen, however, whether the improvements in system integration observed over time are associated with improvements in consumers' clinical and social outcomes. Integrating service systems remains a challenge to mental health and related human service agencies. Its benefits for accountability and centralization of authority have been established. Its impact on individuals with severe and persistent mental illness may be limited by the lack of available high-quality services and mainstream welfare resources, reflecting the gap between what can be done and what is available (Goldman, 1998a). 295 Mental Health: A Report of the Surgeon General Conclusions 1. As individuals move into adulthood, developmental goals focus on productivity and intimacy including pursuit of education, work, leisure, creativity, and personal relationships. Good mental health enables individuals to cope with adversity while pursuing these goals. 2. Untreated, mental disorders can lead to lost productivity, unsuccessful relationships, and significant distress and dysfunction. Mental illness in adults can have a significant and continuing effect on children in their care. 3. Stressful life events or the manifestation of mental illness can disrupt the balance adults seek in life and result in distress and dysfunction. Severe or life-threatening trauma experienced either in childhood or adulthood can further provoke emotional and behavioral reactions that jeopardize mental health. 4. 5. 6. 7. Research has improved our understanding of mental disorders in the adult stage of the life cycle. Anxiety, depression, and schizophrenia, particularly, present special problems in this age group. Anxiety and depression contribute to the high rates of suicide in this population. Schizophrenia is the most persistently disabling condition, especially for young adults, in spite of recovery of function by some individuals in mid to late life. Research has contributed to our ability to recognize, diagnose, and treat each of these conditions effectively in terms of symptom control and behavior management. Medication and other therapies can be independent, combined, or sequenced depending on the individual's diagnosis and personal preference. A new recovery perspective is supported by evidence on rehabilitation and treatment as well as by the personal experiences of consumers. Certain common events of midlife (e.g., divorce or other stressful life events) create mental health problems (not necessarily disorders) that may be addressed through a range of interventions. 8. Care and treatment in the real world of practice do not conform to what research determines as best. For many reasons, at times care is inadequate but there are models for improving treatment. 9. Substance abuse is a major co-occurring problem for adults with mental disorders, Evidence supports combined treatment, although there are substantial gaps between what research recommends and what typically is available in communities. 10. Several special problems in care and treatment of adults have been recognizec, beyond traditional mainstream mental health concerns, including racial and ethnic differences, lack of consumer involvement, and the consequences of disability and poverty. 11. Barriers of access exist in the organization and financing of services for adults. There are specific problems with Medicare, Medicaid, income supports, housing, and managed care. References Aagaard, J., Vestergaard, P., & Maarbjerg, K. (1988). Adherence to lithium prophylaxis: II. 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Journal of Abnormal Psychology, 86. 103-126. 329 CHAPTER 5 OLDER ADULTS AND MENTAL HEALTH Contents ChapterOverview .............................................................. 336 Normal Life-Cycle Tasks ..................................................... 337 Cognitive Capacity With Aging ................................................ 337 Change, Human Potential, and Creativity ......................................... 338 Coping With Loss and Bereavement ............................................ 339 Overview of Mental Disorders in Older Adults ....................................... 340 Assessment and Diagnosis .................................................... 340 Overview of Prevention ...................................................... 341 Primary Prevention ....................................................... 342 Prevention of Depression and Suicide ........................................ 342 Treatment-Related Prevention ... : .......................................... 342 Prevention of Excess Disability ............................................. 343 Prevention of Premature Institutionalization ................................... 343 OverviewofTreatment ....................................................... 343 Pharmacological Treatment ................................................ 344 Increased Risk of Side Effects ........................................... 344 Polypharmacy ....................................................... 345 Treatment Compliance ................................................. 345 Psychosocial Interventions ................................................. 345 Gap Between Efficacy and Effectiveness ..................................... 346 Depression in Older Adults ....................................................... 346 Diagnosis of Major and "Minor" Depression ...................................... 346 Late-Onset Depression .................................................... 347 PrevalenceandIncidence .................................................. 347 Barriers to Diagnosis and Treatment ......................................... 348 Course ................................................................. 349 Interactions With Somatic Illness ........................................... 350 Contents, continued ConsequencesofDepression ................................................... 350 cost ...................................................................... 351 Etiology of Late-Onset Depression .............................................. 35 1 Treatment of Depression in Older Adults ......................................... 352 Pharmacological Treatment ................................................. 352 Tricyclic Antidepressants ............................................... 352 Selective Serotonin Reuptake Inhibitors and Other Newer Antidepressants ........ 353 MultimodalTherapy ................................................... 353 CourseofTreatment ................................................... 354 Electroconvulsive Therapy ................................................. 354 Psychosocial Treatment of Depression ........................................ 355 Alzheimer'sDisease ............................................................ 356 Assessment and Diagnosis of Alzheimer's Disease ................................. 357 Mild Cognitive Impairment ................................................ 357 Behavioral Symptoms ..................................................... 359 Course.. ............................................................... 359 Prevalence andIncidence ................................................... 359 Cost ................................................................... 360 Etiology of Alzheimer's Disease ................................................ 360 Biological Factors ........................................................ 360 Protective Factors ........................................................... 36 1 Histopathology .......................................................... 361 Role of Acetylcholine ..................................................... 36 1 Pharmacological Treatment of Alzheimer's Disease ................................ 362 Acetylcholinesterase Inhibitors ............................................. 362 Treatment of Behavioral Symptoms .......................................... 362 Psychosocial Treatment of Alzheimer's Disease Patients and Caregivers ................ 363 Other Mental Disorders in Older Adults ............................................. 364 Anxiety Disorders ........................................................... 364 PrevalenceofAnxiety ..................................................... 364 Treatment of Anxiety ..................................................... 364 Contents, continued Schizophrenia in Late Life .................................................... 365 Prevalence andCost ...................................................... 365 Late-Onset Schizophrenia ................................................. 366 CourseandRecovery ..................................................... 366 Etiology of Late-Onset Schizophrenia .................................. , ..... 366 Treatment of Schizophrenia in Late Life ...................................... 367 Alcohol and Substance Use Disorders in Older Adults .............................. 368 Epidemiology .......................................................... 368 Alcohol Abuse and Dependence ......................................... 368 Misuse of Prescription and Over-the-Counter Medications .................... 368 Illicit Drug Abuse and Dependence ....................................... 369 Course ................................................................. 369 Treatment of Substance Abuse and Dependence ................................ 370 ServiceDelivery ............................................................... 370 Overview of Services ........................................................ 370 Service Settings and the New Landscape for Aging ................................. 371 PrimaryCare ............................................................. 372 Adult Day Centers and Other Community Care Settings .......................... 373 NursingHomes .......................................................... 374 Services for Persons With Severe and Persistent Mental Disorders ................. 374 Financing Services for Older Adults ............................................ 376 Increased Role of Managed Care ............................................ 376 Carved-In Mental Health Services for Older Adults ............................. 376 Carved-Out Mental Health Services for Older Adults ............................ 377 Outcomes Under Managed Care ............................................ 377 OtherServicesandSupports ...................................................... 378 SupportandSelf-HelpGroups ................................................. 378 Education and Health Promotion ............................................... 379 FamiliesandCaregivers ...................................................... 379 Communities and Social Services ............................................... 380 Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 381 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .._......................... 381 CHAPTER 5 OLDER ADULTS AND MENTAL HEALTH T he past century has witnessed a remarkable lengthening of the average life span in the United States, from 47 years in 1900 to more than 75 years in the mid-1990s (National Center for Health Statistics [NCHS], 1993). Equally noteworthy has been the increase in the number of persons ages 85 and older (Figure 5-l). These trends will continue well into the next century and be magnified as the numbers of older Americans increase with the aging of the post-World War II baby boom generation. Millions of older Americans-indeed, the major- ity-cope constructively with the physical limitations, cognitive changes, and various losses, such as bereavement, that frequently are associated with late life. Research has contributed immensely to our understanding of developmental processes that continue to unfold as we age. Drawing on new scientific information and acting on clinical common sense, mental health and general health care providers are increasingly able to suggest mental health strategies and skills that older adults can hone to make this stage of the life span satisfying and rewarding. The capacity for sound mental health among older adults notwithstanding, a substantial proportion of the population 55 and older-almost 20 percent of this age group-experience specific mental disorders that are not part of "normal" aging (see Table 5-l). Research that has helped differentiate mental disorders from "normal" aging has been one of the more important achievements of recent decades in the field of geriatric health. Unrecognized or untreated, however. depression, Alzheimer's disease, alcohol and drug misuse and abuse, anxiety, late-life schizophrenia, and other conditions can be severely impairing, even fatal; Figure 5-1. Increases in the percent of the US. population over age 65 years and over age 65 years (Malmgren, 1994). 6.8% 1 .3% 1940 132 million 1960 180 million I 980 227 million Total U.S. Population 1990 249 million 2010 298 million 335 Mental Health: A Report of the Surgeon General Table 5-1. Best Estimate l-Year Prevalence Rates Based on Epidemiologic Catchment Area, Age 55+ Prevalence ("W Any Anxiety Disorder 11.4 I _. i _1 "_L. __. . .al.-.d. .;.a- Le.+* ._, .-.- *_ i Simple Phobia 7.3 _. Social Phobia 1.0 ,,_ _,,. _ :-.. . . . ^"I __.,-.,- I. >dLL r.bd.-..i..r /._. I-& ,,..._..-. Agoraphobia 4.1 `, _. :;;; P&ic'Disorder :`. - + a.",, 0.5 .( . . Obsessive-Compulsive Disorder 1.5 _(..". _.ji,.. ".,.. _ Any Mood Disorder 4.4 . ~. t 1 ../ Major Depressive Episode 3.8 -_ .x ^* `" _ -",. -.: __ _i k+ipolar Major Depression ' -`- 3.7 . %"".e. .I ._ . ." Dysthymia 1.6 *' Bipolar I 0.2 Bipolar II 0.1 . .y.`....~ fl I,l(rl, _. _I_._ .- , ."._ _ . .*. . .- . . . . .` Schizophrenia 0.6 rurL.i: . ". `_..._ I . . ( .., . . . . i ~. _., Somatization 0.3 ),. is-, ) .- x , ;. . . .*:. *< -. -_ Antibcial Personality Disorder ' 0.0 ".*a." . ,. , . . . ^ . . . ..,.. ,_ . _ . ..., . * __ : Anorexia Nervosa 010 ".," I . . I. Seve're Cognitive Impairment 6.6 rX_"_leI" _ - . . .._ _ /- ._c ., Any Disorder 19.8 i Source: D. Regier & W. Narrow, personal communication, 1999. in the United States, the rate of suicide, which is frequently a consequence of depression, is highest among older adults relative to all other age groups (Hoyert et al., 1999). The clinical challenges such conditions present may be exacerbated, moreover, by the manner in which they both affect and are affected by general medical conditions or by changes in cognitive capacities. Another complicating factor is that many older people, disabled by or at risk for mental disorders, find it difficult to afford and obtain needed medical and related health care services. Late- life mental disorders also can pose difficulties for the burgeoning numbers of family members who assist in caretaking tasks for their loved ones (Light & Lebowitz, 1991). Chapter Overview Fortunately, the past 15 to 20 years have been marked by rapid growth in the number of clinical, research, and training centers dedicated to the mental illness- and mental health-related needs of older people. As evident in this chapter, much has been learned. The chapter reviews, first, normal developmental milestones of aging, highlighting the adaptivecapacities that enable many older people to change, cope with loss, and pursue productive and fulfilling activities. The chapter then considers mental disorders in older people-their diagnosis and treatment, and the various risk factors that may complicate the course or outcome of treatment. Risk factors include co-occurring, or comorbid, general medical conditions, the high numbers of medications many older individuals take, and psychosocial stressors such as bereavement or isolation. These are cause for concern, but, as the chapter notes, they also point the way to possible new preventive interventions. The goal of such prevention strategies may be to limit disability or to postpone or even eliminate the need to institutionalize an ill person (Lebowitz & Pearson, in press). The chapter reviews gains that have been realized in making appropriate mental health services available to older people and the challenges associated with the delivery of services to this population. The advantages of a decisive shift away from mental hospitals and nursing homes to treatment in community-based settings today are in jeopardy of being undermined by fragmentation and insufficient availability of such services (Gatz & Smyer, 1992; Cohen & Cairl, 1996). The chapter examines obstacles and opportunities in the service delivery sphere, in part through the lens of public and private sector financing policies and managed care. Finally, the chapter reviews the supports for older persons that extend beyond traditional, formal treatment settings. Through support networks, self-help groups, and other means, consumers, families, and communities are assuming an increasingly important 336 role in treating and preventing mental health problems and disorders among older persons. Normal Life-Cycle Tasks With improved diet, physical fitness, public health, and health care, more adults are reaching age 65 in better physical and mental -health than in the past. Trends show that the prevalence of chronic disability among older people is declining: from 1982 to 1994, the prevalence of chronic disability diminished significantly, from 24.9 to 21.3 percent of the older population (Manton et al., 1997). While some disability is the result of more general losses of physiological functions with aging (i.e., normal aging). extreme disability in older persons, including that which stems from mental disorders, is not an inevitable part of aging (Cohen, 1988; Rowe & Kahn, 1997). Normal aging is a gradual process that ushers in some physical decline, such as decreased sensory abilities (e.g., vision and hearing) and decreased pulmonary and immune function (Miller, 1996; Carman, 1997). With aging come certain changes in mental functioning, but very few of these changes match commonly held negative stereotypes about aging (Cohen, 1988; Rowe & Kahn, 1997). In normal aging, important aspects of mental health include stable intellectual functioning, capacity for change, and productive engagement with life. Cognitive Capacity With Aging Cognition subsumes intelligence, language, learning, and memory. With advancing years, cognitive capacity with aging undergoes some loss, yet important functions are spared. Moreover, there is much variability between individuals, variability that is dependent upon lifestyle and psychosocial factors (Gottlieb, 1995). Most important. accumulating evidence from human and animal research finds that lifestyle modifies genetic risk in influencing the outcomes of aging (Finch & Tanzi, 1997). This line of research is beginning to dispel the pejorative stereotypes of older people as rigidly shaped by heredity and incapable of broadening their pursuits and acquiring new skills. Older Adults and Mental Health A large body of research, including both cross- sectional studies and longitudinal studies. has investigated changes in cognitive function with aging. Studies have found that working memory declines with aging, as does long-term memory (Siegler et al., 1996), with decrements more apparent in recall than in recognition capacities. Slowing or some loss of other cognitive functions takes place, most notably in information processing, selective attention, and problem-solving ability, yet findings are variable (Siegler et al., 1996). These cognitive changes translate into a slower pace of learnmg and greater need for repetition of new information. Vocabulary increases slightly until the mid-70s, after which it declines (Carman, 1997). In older people whose IQ declines, somatic illness is implicated in some cases (Cohen, 1988). Fluid intelligence, aformof intelligence defined as the ability to solve novel problems, declines over time, yet research finds that fluid intelligence can be enhanced through training in cognitive skills and problem-solving strategies (Baltes et al., 1989). Memory complaints are exceedingly common in older people, with 50 to 80 percent reporting subjective memory complaints (cited in Levy-Cushman & Abeles, in press). However, subjective memory complaints do not correspond with actual performance. In fact, some who complain about memory display performance superior to those who do not complain (Collins & Abeles, 1996). Memory complaints in older people, according to several studies, are thought to be more a product of depression than of decline in memory performance (cited in Levy-Cushman & Abeles, in press). (The importance of proper diagnosis and treatment of depression is emphasized in subsequent sections of this chapter.) Studies attempting to treat memory complaints associated with normal aging-using either pharmacological or psychosocial means-have been, with few exceptions, unsuccessful (Crook, 1993). In one of these exceptions, a recent study demonstrated a significant reduction in memory complaints with training workshops for healthy older people. The workshops stressed not only memory promotion strategies, but also ways of dealing with 337 Mental Health: A Report of the Surgeon General expectations and perceptions about memory loss (Levy- Cushman & Abeles, in press). One large, ongoing longitudinal study found high cognitive performance to be dependent on four factors, ranked here in decreasing order of importance: education, strenuous activity in the home, peak pulmonary flow rate, and "self-efficacy," which is a personality measure defined by the ability to organize and execute actions required to deal with situations likely to happen in the future (Albert et al., 1995). Education, as assessed by years of schooling, is the strongest predictor of high cognitive functioning. This finding suggests that education not only has salutary effects on brain function earlier in life, but also foreshadows sustained productive behavior in later life, such as reading and performing crossword puzzles (Rowe & Kahn. 1997). The coexistence of mental and somatic disorders (i.e., comorbidity) is common (Kramer et al., 1992). Some disorders with primarily somatic symptoms can cause cognitive. emotional, and behavioral symptoms as well, some of which rise to the level of mental disorders. At that point, the mental disorder may result from an effect of the underlying disorder on the central nervous system (e.g., dementia due to a medical condition such as hypothyroidism) or an effect of treatment (e.g., delirium due to a prescribed medication). Likewise, mental problems or disorders can lead to or exacerbate other physical conditions by decreasing the ability of older adults to care for themselves, by impairing their capacity to rally social support, or by impairing physiological functions. For example, stress increases the risk of coronary heart disease and can suppress cellular immunity (McEwen, 1998). Depression can lead to increased mortality from heart disease and possibly cancer (Frasure-Smith et al., 1993, 1995; Penninx et al., 1998). A new model postulates that successful aging is contingent upon three elements: avoiding disease and disability, sustaining high cognitive and physical function, and engaging with life (Rowe & Kahn, 1997). The latter encompasses the maintenance of interpersonal relationships and productive activities, as defined by paid or unpaid activities that generate goods or services of economic value. The three major elements are considered to act in concert, for none is deemed sufficient by itself for successful aging. This new model broadens the reach of health promotion in aging to entail more than just disease prevention. Change, Human Potential, and Creativity Descriptive research reveals evidence of the capacity for constructive change in later life (Cohen, 1988). The capacity to change can occur even in the face of mental illness, adversity, and chronic mental health problems. Older persons display flexibility in behavior and attitudes and the ability to grow intellectually and emotionally. Time plays a key role. Externally imposed demands upon one's time may diminish, and the amount of time left at this stage in life can be significant. In the United States in the late 20th century, late-life expectancy approaches another 20 years at the age of 65. In other words, average longevity from age 65 today approaches what had been the average longevity from birth some 2,000 years ago. This leaves plenty of time to embark upon new social, psychological, educational, and recreational pathways, as long as the individual retains good health and material resources. In his classic developmental model, Erik Erikson characterized the final stage of human development as a tension between "ego integrity and despair" (Erikson, 1950). Erikson saw the period beginning at age 65 years as highly variable. Ideally, individuals at this stage witness the flowering of seeds planted earlier in the prior seven stages of development. When they achieve a sense of integrity in life, they garner pride from their children, students and proteges, and past accomplishments. With contentment comes a greater tolerance and acceptance of the decline that naturally accompanies the aging process. Failure to achieve a satisfying degree of ego integrity can be accompanied by despair. Cohen (in press) has proposed that with increased longevity and health, particularly for people with adequate resources, aging is characterized by two human potential phases. These phases, which emphasize the positive aspects of the final stages of the 338 life cycle. are termed Retirement/Liberation and Slrmming Up/Swan Song. Retirement often is viewed as the most important life event prior to death. Retirement frequently is associated with negative myths and stereotypes (Sheldon et al., 1975; Bass, 1995). Cohen points out, however, that most people fare well in retirement. They have the opportunity to explore new interests, acrivities, and relationships due to retirement's liberating qualities. In the Retirement/Liberation phase, new feelings of freedom, courage, and confidence are experienced. Those at risk for faring poorly are individuals who typically do not want to retire, who are compelled to retire because of poor health, or who experience a significant decline in their standard of living (Cohen, 1988). In short, the liberating experience of having more time and an increased sense of freedom can be the springboard for creativity in later life. Creative achievement by older people can change the course of an individual, family, community, or culture. In the late-life Summing Up/Swan Song phase, there is a tendency to appraise one's life work, ideas, and discoveries and to share them with family or society. The desire to sum up late in life is driven by varied feelings, such as the desire to complete one's life work, the desire to give back after receiving much in life, or the fear of time evaporating. Important opportunities for creative sharing and expression ensue. There is a natural tendency with aging to reminisce and elaborate stories that has propelled the development of reminiscence therapy for health promotion and disease prevention. The swan song, the final part of this phase, connotes the last act or final creative work of a person before retirement or death. There is much misunderstanding about thoughts of death in later life. Depression, serious loss, and terminal illness trigger the sense of mortality, regardless of age. Contrary to popular stereotypes, studies on aging reveal that most older people generally do not have a fear or dread of death in the absence of being depressed, encountering serious loss, or having been recently diagnosed with a terminal illness (Kastenbaum, 1985). Periodic thoughts of death-not in the form of dread or angst-do occur. But these are Older Adults and Mental Health usually associated with the death of a friend or family member. When actual dread of death does occur, it should not be dismissed as accompanying aging, but rather as a signal of underlying distress (e.g., depression). This is particularly important in light of the high risk of suicide among depressed older adults, which is discussed later in this chapter. Coping With Loss and Bereavement Many older adults experience loss with aging-loss of social status and self-esteem, loss of physical capacities, and death of friends and loved ones. But in the face of loss, many older people have the capacity to develop new adaptive strategies, even creative expression (Cohen, 1988, 1990). Those experiencing loss may be able to move in a positive direction, either on their own, with the benefit of informal support from family and friends, or with formal support from mental health professionals. The life and work of William Carlos Williams are illustrative. Williams was a great poet as well as a respected physician. In his 60s he suffered a stroke that prevented him from practicing medicine. The stroke did not affect his intellectual abilities, but he became so severely depressed that he needed psychiatric hospitalization. Nonetheless, Williams, with the help of treatment for a year, surmounted the depression and for the next 10 years wrote luminous poetry, including the Pulitzer Prize-winning Pictures From Bruegel, which was published when he was 79. In his later life, Williams wrote about "old age that adds as it takes away." What Williams and his poetry epitomize is that age can be the catalyst for tapping into creative potential (Cohen, 1998a). Loss of a spouse is common in late life. About 800,000 older Americans are widowed each year. Bereavement is a natural response to death of a loved one. Its features, almost universally recognized, include crying and sorrow, anxiety and agitation, insomnia. and loss of appetite (Institute of Medicine [IOMI, 1984). This constellation of symptoms, while overlaPpi% somewhat with major depression, does not bY itself constitute a mental disorder. Only when symptoms persist for 2 months and longer after the loss does the 339 Mental Health: A Report of the Surgeon General DSM-IV permit a diagnosis of either adjustment disorder or major depressive disorder. Even though bereavement of less than 2 months' duration is not considered a mental disorder, it still warrants clinical attention (DSM-IV). The justification for clinical attention is that bereavement, as a highly stressful event, increases the probability of, and may cause or exacerbate, mental and somatic disorders. Bereavement is an important and well-established risk factor for depression. At least 10 to 20 percent of widows and widowers develop clinically significant depression during the first year of bereavement. Without treatment, such depressions tend to persist, become chronic, and lead to further disability and impairments in general health, including alterations in endocrine and immune function (Zisook & Shuchter, 1993; Zisook et al., 1994). Several preventive interventions, including participation in self-help groups, have been shown to prevent depression among widows and widowers, although one study suggested that self-help groups can exacerbate depressive symptoms in certain individuals [Levy et al., 1993). These are described later in this chapter. Bereavement-associated depression often coexists with another type of emotional distress, which has been termed traumatic grief (Prigerson et al., in press). The symptoms of traumatic grief, although not formalized as a mental disorder in DSM-IV, appear to be a mixture of symptoms of both pathological grief and post- traumatic stress disorder (Frank et al., 1997a). Such symptoms are extremely disabling, associated with functional and health impairment and with persistent suicidal thoughts, and may well respond to pharmaco- therapy (Zygmont et al., 1998). Increased illness and mortality from suicide are the most serious consequences of late-life depression. The dynamics around loss in later life need greater clarification. One pivotal question is why some, in confronting loss with aging, succumb to depression and suicide-which, as noted earlier, has its highest frequency after age 65--while others respond with new adaptive strategies. Research on health promotion also needs to identify ways to prevent adverse reactions and to promote positive responses to loss in later life. 1 Meanwhile, despite cultural attitudes that older persons can handle bereavement by themselves or with support from family and friends, it is imperative that those who are unable to cope be encouraged to access mental health services. Bereavement is not a mental disorder but, if unattended to, has serious mental health and other health consequences. Overview of Mental Disorders in Older Adults Older adults are encumbered bg many of the same mental disorders as are other adults; however, the prevalence, nature, and course of each disorder may be very different. This section provides a general overview of assessment, diagnosis, and treatment of mental disorders in older people. Its purpose is to describe issues common to many mental disorders. Subsequent sections of this chapter provide more detailed reviews of late-life depression and Alzheimer's disease. Also, to shed light on the range and frequency of disorders that impair the mental well-being of older Americans, the chapter reviews the impact on older adults of anxiety, schizophrenia, and alcohol and substance abuse. Assessment and Diagnosis Assessment and diagnosis of late-life mental disorders are especially challenging by virtue of several distinctive characteristics of older adults. First, the clinical presentation of older adults with mental disorders may be different from that of other adults, making detection of treatable illness more difficult. For example, many older individuals present with somatic complaints and experience symptoms of depression and anxiety that do not meet the full criteria for depressive or anxiety disorders. The consequences of these subsyndromal conditions may be just as deleterious as the syndromes themselves. Failure to detect individuals who truly have treatable mental disorders represents a serious public health problem (National Institutes of Health [NIH] Consensus Development Panel on Depression in Late Life, 1992). Detection of mental disorders in older adults is complicated further by high comorbidity with other 340 medical disorders. The symptoms of somatic disorders n,ay mimic or mask psychopathology, making diagnosis more taxing. In addition, older individuals are more likely to report somatic symptoms than psychological ones, leading to further under- identification of mental disorders (Blazer, 1996b). Primary care providers carry much of the burden for diagnosis of mental disorders in older adults, and, unfortunately, the rates at which they recognize and properly identify disorders often are low. With respect to depression, for example, a significant number of depressed older adults are neither diagnosed nor treated in primary care (NIH Consensus Development Panel on Depression in Late Life, 1992; Unutzer et al., 1997b). In one study of primary care physicians, only 5.5 percent of internists felt confident in diagnosing depression, and even fewer (35 percent of the total) felt confident in prescribing antidepressants to older persons (Callahan et al., 1992). Physicians were least likely to report that they felt "very confident" in evaluating depression in other late-life conditions (Gal10 et al., in press). Researchers estimate that an ~rnet need for mental health services may be experienced by up to 63 percent of adults aged 65 years and older with a mental disorder, based on prevalence estimates from the Epidemiologic Catchment Area (ECA) study (Rabins, 1996). The large unmet need for treatment of mental disorders reflects patient barriers (e.g., preference for primary care, tendency to emphasize somatic problems, reluctance to disclose psychological symptoms), provider barriers (e.g., lack of awareness of the manifestations of mental disorders, complexity of treatment, and reluctance to inform patients of a diagnosis), and mental health delivery system barriers (e.g., time pressures, reimbursement policies), Stereotypes about normal aging also can make diagnosis and assessment of mental disorders in late life challenging. For example, many people believe that "senility" is normal and therefore may delay seeking care for relatives with dementing illnesses. Similarly, Patients and their families may believe that depression and hopelessness are natural conditions of older age, especially with prolonged bereavement. Older Adults and Mental Health Cognitive decline. both normal and pathological. can be a barrier to effective identification and assessment of mental illness in late life. Obtaining an accurate history, which may need to be taken from family members, is important for diagnosis of most disorders and especially for distinguishing betlveen somatic and mental disorders. Normal decline in short-term memory, and especially the severe impairments in memory seen in dementing illnesses hamper attempts to obtain good patient histories. Similarly, cognitive deficits are prominent features of many disorders of late life that make diagnosis of psychiatric disorders more difficult. Overview of Prevention Prevention in mental health has been seen until recently as an area limited to childhood and adolescence. Now there is mounting a\vareness of the value of prevention in the older population. While the body of published literature is not as extensive as that for diagnosis or treatment, investigators are beginning to shape new approaches to pre\,ention. Yet because prevention research is driven. in part, by refined understanding of disease etiology-and etiology research itself continues to be rife with uncertainty-prevention advances are expected to lag behind those in etiology. There are man! ways in which prevention models can be applied to older individuals, provided a broad view of prevention is used (Lebowitz & Pearson. in press). Such a broad view entails interventions for reducing the risk of developing, exacerbating, or experiencing the consequences of a mental disorder. Consequently, this section covers primary prevention (including the pre\.ention of depression and suicide), treatment-related prevention, prevention of excess disability, and prevention of premature institutionaliza- tion. However, many of the research advances noted in this section have yet to be translated into practice. Given the frequency of memory complaints and depression, the tnne may soon arrive for older adu ts ~0 be encouraged to have "mood and memory cneckups" in the same manner that they are now encouraged to have physical checkups (N. Abeles, personal communication. 1998). 341 Mental Health: A Report of the Surgeon General Primary Prevention Primary prevention, the prevention of disease before it occurs, can be applied to late-onset disorders. Progress in our understanding of etiology, risk factors, pathogenesis, and the course of mental disorders- discussed later in this chapter for depression, Alzheimer's disease, and other conditions-stimulates and channels the development of prevention interventions. The largest body of primary prevention research focuses on late-life depression, where some progress has been documented. With other disorders, primary prevention research is in its infancy. Prevention in Alzheimer's disease might target individuals at increased genetic risk with prophylactic nutritional (e.g., vitamin E), cholinergic, or amyloid-targeting interventions. Prevention research on late-onset schizophrenia might explore potential protective factors, such as estrogen. Prevention of Depression and Suicide Depression is strikingly prevalent among older people. As noted below, 8 to 20 percent of older adults in the community and up to 37 percent in primary care settings experience symptoms of depression. One approach to preventing depression is through grief counseling for widows and widowers. For example, participation in self-help groups appears to ameliorate depression, improve social adjustment, and reduce the use of alcohol and other drugs of abuse in widows (Constantino, 1988; Lieberman & Videka-Sherman, 1986). The efficacy of self-help groups approximates that of brief psychodynamic psychotherapy in older bereaved individuals without significant prior psychopathology (Mat-mar et al., 1988). The battery of psychosocial and pharmacological treatments to prevent recurrences of depression (i.e., secondary prevention) is discussed later in this chapter under the section on depression. Depression is a foremost risk factor for suicide in older adults (Conwell, 1996; Conwell et al., 1996). Older people have the highest rates of suicide in the U.S. population: suicide rates increase with age, with older white men having a rate of suicide up to six times that of the general population (Kachur et al., 1995; Hoyert et al., 1999). Despite the prevalence of depression and the risk it confers for suicide, depression is neither well recognized nor treated in primary care settings, where most older adults seek and receive health care (Unutzer et al., 1997a). Studies described in the depression section of this chapter have found that undiagnosed and untreated depression in the primary care setting plays a significant role in suicide (Caine et al., 1996). This awareness has prompted the development of suicide prevention strategies expressly for primary care. One of the first published suicide prevention studies, an uncomrolled experiment conducted in Sweden, suggested that a depression training program for general practitioners reduces suicide (Rihmer et al., 1995). Suicide interventions, especially in the primary care setting, have become a priority of the U.S. Public Health Service, with lead responsibility assumed by the Office of the Surgeon General and the National Institute of Mental Health. Depression and suicide prevention strategies also are important for nursing home residents. About half of patients newly relocated to nursing homes are at heightened risk for depression (Parmelee et al., 1989). Treatment-Related Prevention Prevention of relapse or recurrence of the underlying mental disorder is important for improving the mental health of older patients with mental disorders. For example, treatments that are applied with adequate intensities for depression (Schneider, 1996) and for depression in Alzheimer's disease (Small et al., 1997) may prevent relapse or recurrence. Substantial residual disability in chronically mentally ill individuals (Lebowitz et al., 1997) suggests that treatment must be approached from a longer term perspective (Reynolds et al., 1996). Prevention of medication side effects and adverse reactions also is an important goal of treatment-related prevention efforts in older adults. Comorbidity and the associated polyphatmacy for multiple conditions are characteristic of older patients. New information on the genetic basis of drug metabolism and on the action of drug-metabolizing enzymes can lead to a better 342 understanding of complex drug interactions (Nemeroff St 31.. 1996). For example, many of the selective zerotonin reuptake inhibitors compete for the same metabolic pathway used by beta-blockers, type 1C anti- ;uThythmics, and benzodiazepines (Nemeroff et al., 1996). This knowledge can assist the clinician in choosing medications that can prevent the likelihood of side effects. In addition, many older patients require antipsychotic treatment for management of behavioral symptoms in Alzheimer's disease, schizophrenia, and depression. Although doses tend to be quite low, age and length of treatment represent major risk factors for movement disorders (Saltz et al., 1991; Jeste et al., 1995a). Recent research on older people suggests that the newer antipsychotics present a much lower risk of movement disorders, highlighting their importance for prevention (Jeste et al., in press). Finally, body sway and postural stability are affected by many drugs, although there is wide variability within classes of drugs (Laghrissi-Thode et al., 1995). Minimizing the risk of falling, therefore, is another target for prevention research. Falls represent a leading cause of injury deaths among older persons (IOM, 1999). Prevention of Excess Disabilify Prevention efforts in older mentally ill populations also target avoidance of excessive disability. The concept of excess disability refers to the observation that many older patients, particularly those with Alzheimer's disease and other severe and persistent mental disorders, are more functionally impaired than would be expected according to the stage or severity of their disorder. Medical, psychosocial, and environmental factors all contribute to excess disability. For example, depression contributes to excess disability by hastening functional impairment in patients with Alzheimer's disease (Ritchie et al., 1998). The fast pace of modem life. with its emphasis on independence, also contributes to excess disability by making it more difficult for older adults with impairments to function autonomously. Attention to depression, anxiety, and other mental disorders may reduce the functional limitations associated with concomitant mental and somatic impairments. Many studies have demonstrated Older Adults and Mental Health that attention to these factors and aggressive intervention, where appropriate, maximize function (Lebowitz & Pearson, in press). Prevention of Premature institutionalization Another important goal of prevention efforts in older adults is prevention of premature institutionalization. While institutional care is needed for many older patients who suffer from severe and persistent mental disorders, delay of institutional placement until absolutely necessary generally is what patients and family caregivers prefer. It also has significant public health impact in terms of reducing costs. A randomized study of counseling and support versus usual care for family caregivers of patients with Alzheimer's disease found the intervention to have delayed patients' nursing home admission by over 300 days (Mittelman et al., 1996). The intervention also resulted in a significant reduction in depressive symptoms in the caregivers. The intervention consisted of three elements: individual and family counseling sessions, support group participation, and availability of counselors to assist with patient crises. The growing importance of avoiding premature institutionalization is illustrated by its use as one measure of the effectiveness of pharmacotherapy in older individuals. For example, clinical trials of drugs for Alzheimer's disease have begun using delay of institutionalization as a primary outcome (San0 et al., 1997) or as a longer-term outcome in a followup study after the double-blind portion of the clinical trial ended (Knopman et al., 1996). Overview of Treatment Treatment of mental disorders in older adults encompasses pharmacological interventions, electro- convulsive therapy, and psychosocial interventions. While the pharmacological and psychosocial interventions used to treat mental health problems and specific disorders may be identical for older and younger adults, characteristics unique to older adults may be important considerations in treatment selection. 343 Mental Health: A Report of the Surgeon General Pharmacological Treatment The special considerations in selecting appropriate medications for older people include physiological changes due to aging; increased vulnerability to side effects, such as tardive dyskinesia; the impact of polypharmacy; interactions with other comorbid disorders; and barriers to compliance. All are discussed below. The aging process leads to numerous changes in physiology, resulting in altered blood levels of certain medications, prolonged pharmacological effects, and greater risk for many side effects (Kendell et al., 1981). Changes may occur in the absorption, distribution, metabolism, and excretion of psychotropic medications (Pollock & Mulsant, 1995). As people age. there is a gradual decrease in gastrointestinal motility, gastric blood flow, and gastric acid production (Greenblatt et al., 1982). This slows the rate of absorption, but the overall extent of gastric absorption is probably comparable to that in other adults. The aging process is also associated with a decrease in total body water, a decrease in muscle mass, and an increase in adipose tissue (Borkan et al., 1983). Drugs that are highly lipophilic, such as neuro- leptics, are therefore more likely to be accumulated in fatty tissues in older patients than they are in'younger patients. The liver undergoes changes in blood flow and volume with age. Phase I metabolism (oxidation, reduction, hydrolysis) may diminish or remain unchanged, while phase II metabolism (conjugation with an endogenous substrate) does not change with aging. Renal blood flow, glomerular surface area, tubular function, and reabsorption mechanisms all have been shown to diminish with age. Diminished renal excretion may lead to a prolonged half-life and the necessity for a lower dose or longer dosing intervals. Pharmacodynamics, which refers to the drug's effect on its target organ, also can be altered in older individuals. An example of aging-associated pharmaco- dynamic change is diminished central cholinergic function contributing to increased sensitivity to the anticholinergic effects of many neuroleptics and antidepressants in older adults (Molchan et al., 1992). Because of the pharmacokinetic and pharmaco- dynamic concerns presented above, it is often recommended that clinicians "start low and go slow" when prescribing new psychoactive medications for older adults. In other words, efficacy is greatest and side effects are minimized when initial doses are small and the rate of increase is slow. Nevertheless, the medication should generally be titrated to the regular adult dose in order to obtain the full benefit. The potential pitfall is that, because of slower titration and the concomitant need for more frequent medical visits, there is less likelihood of oldec adults receiving an adequate dose and course of medication. Increased Risk of Side Effects Older people encounter an increased risk of side effects, most likely the result of taking multiple drugs or having higher blood levels of a given drug. The increased risk of side effects is especially true for neuroleptic agents, which are widely prescribed as treatment for psychotic symptoms, agitation, and behavioral symptoms. Neuroleptic side effects include sedation, anticholinergic toxicity (which can result in urinary retention, constipation, dry mouth, glaucoma, and confusion), extrapyramidal symptoms (e.g., parkin- sonism, akathisia, and dystonia), and tar-dive dyskinesia. Chapter 4 contains more detailed information about the side effects of neuroleptics. Tardive dyskinesia is a frequent and persistent side effect that occurs months to years after initiation of neuroleptics. In older adults, tardive dyskinesia typically entails abnormal movements of the tongue. lips, and face. In a recent study of older outpatients treated with conventional neuroleptics the incidence of tardive dyskinesia after 12 months of neuroleptic treatment was 29 percent of the patients. At 24 and 36 months, the mean cumulative incidence was 50.1 percent and 63.1 percent, respectively (Jeste et al., 1995a). This study demonstrates the high risk of tardive dyskinesia in older patients even with low doses of conventional neuroleptics. Studies of younger adult patients reveal an annual cumulative incidence of tardive dyskinesia at 4 to 5 percent (Kane et al., 1993). 344 Unlike conventional neuroleptics, the newer atypical ones, such as clozapine, risperidone, olanzapine, and quetiapine, apparently confer several advantages with respect to both efficacy and safety. These drugs are associated with a lower incidence of extrapyramidal symptoms than conventional neuro- leptics are. For clozapine. the low risk of tardive dyskinesia is well established (Kane et al., 1993). The incidence of tar-dive dyskinesia with other atypical antipsychotics is also likely to be lower than that with conventional neuroleptics because extrapyramidal symptoms have been found to be a risk factor for tardive dyskinesia in older adults (Saltz et al., 1991; Jeste et al., 1995a). The determination of exact risk of tardive dyskinesia with these newer drugs needs long-term studies. ' Polypharmacy In addition to the effects of aging on pharmacokinetics and pharmacodynamics and the increased risk of side effects, older individuals with mental disorders also are more likely than other adults to be medicated with multiple compounds, both prescription and nonprescription (i.e., polypharmacy). Older adults (over the age of 65) fill an average of 13 prescriptions a year (for original or refill prescriptions), which is approximately three times the number filled by younger individuals (Chrischilles et al., 1992). Polypharmacy greatly complicates effective treatment of mental disorders in older adults. Specifically, drug-drug interactions are of concern, both in terms of increasing side effects and decreasing efficacy of one or both compounds. Treatment Compliance Compliance with the treatment regimen also is a special concern in older adults, especially in those with moderate or severe cognitive deficits. Physical problems, such as impaired vision, make it likely that instructions may be misread or that one medicine may be mistaken for another. Cognitive impairment may also make it difficult for patients to remember whether or not they have taken their medication. Although in general. older patients are more compliant about taking Older Adults and Mental Health psychoactive medications than other types of drugs (Cooper et al., 1982), when noncompliance does occur, it may be less easily detected, more serious, less easily resolved, mistaken for symptoms of a new disease, or even falsely labeled as "old-age" symptomatology. Accordingly, greater emphasis must be placed on strict compliance by patients in this age group (Lamy et al., 1992). Medication noncompliance takes different forms in older adults, that is, overuse and abuse, forgetting, and alteration of schedules and doses. The most common type of deliberate noncompliance among older adults may be the underuse of the prescribed drug. mainly because of side effects and cost considerations. Factors that contribute to medication noncompliance in older patients include inadequate information given to them regarding the necessity for drug treatment, unclear prescribing directions, suboptimal doctor-patient relationship, the large number of times per day drugs must be taken, and the large number of drugs that are taken at the same time (Lamy et al., 1992). Better compliance may be achieved by giving simple instructions and by asking specific questions to make sure that the patient understands directions. Psychosocial Interventions Several types of psychosocial interventions have proven effective in older patients with mental disorders, but the research is more limited than that on pharmacological interventions (see Klausner & Alexopoulos, in press). Both types are frequently used in combination. Most of the research has been restricted to psychosocial treatments for depression, although, as discussed below, there is mounting interest in dementia. For other mental disorders, psychosocial interventions found successful for younger adults are often tailored to older people in the practice setting without the benefit of efficacy research. Despite the relative paucity of research, psycho- social interventions may be preferred for some older patients, especially those who are unable to tolerate, or prefer not to take, medication or who are confronting stressful situations or low degrees of social support (Lebowitz et al., 1997). The benefits of psychosocial interventions are likely to assume greater prominence 345 Mental Health: A Report of the Surgeon General as a result of population demographics: as the number of older people grows, progressively more older people in need of mental health treatment-especially the very old-are expected to be suffering from greater levels of comorbidity or dealing with the stresses associated with disability. Psychosocial interventions not only can help relieve the symptoms of a variety of mental disorders and related problems but also can play more diverse roles: they can help strengthen coping mechanisms, encourage (and monitor) patients' compliance with medications, and promote healthy behavior (Klausner & Alexopoulos, in press). New approaches to service delivery are being designed to realize the benefits of established psycho- social interventions. Many older people are not comfortable with traditional mental health settings, partially as a result of stigma (Waters, 1995). In fact, many older people prefer to receive treatment for mental disorders by their primary care physicians, and most older people do receive such care in the primary care setting (Brody et al., 1997; Unutzer et al., 1997a). Since older people show willingness to accept psychosocial interventions in the primary care setting, new models are striving to integrate into the primary care setting the delivery of specialty mental health services. The section of this chapter on service delivery discusses new models in greater detail. Gap Between Efficacy and Effectiveness A problem common to both pharmacological and psychosocial interventions is the disparity between treatment efficacy, as demonstrated in randomized controlled clinical trials, and effectiveness in real-world settings. While this problem is certainly not unique to older people (see Chapter 2 for a broader discussion of the problem), this problem is especially significant for older people with mental disorders. Older people are often undertreated for their mental disorders in primary care settings (Unutzer et al., 1997a). When they do receive appropriate treatment, older people are more likely than other people to have comorbid disorders and social problems that reduce treatment effectiveness (Unutzer et al.. 1997a). An additional overlay of barriers, including financing and systems of care, is discussed later in this chapter. Depression in Older Adults Depression in older adults not only causes distress and suffering but also leads to impairments in physical, mental, and social functioning. Despite being associated with excess morbidity and mortality, depression often goes undiagnosed and untreated. The startling reality is that a substantial proportion of older patients receive no treatment or inadequate treatment for their depression in primary care settings, according to expert consensus (NM Consensus Development Panel on Depression in Late Life, 1992; Lebowitz et al., 1997). Part of the problem is that depression in older people is hard to disentangle from the many other disorders that affect older people, and its symptom profile is somewhat different from that in other adults. Depressive symptoms are far more common than full- fledged major depression. However, several depressive symptoms together represent a condition-explained below as "minor depression"-that can be as disabling as major depression (Unutzer et al., 1997a). Minor depression, despite the implications of the term, is major in its prevalence and impact. Eight to 20 percent of older adults in the community and up to 37 percent in primary care settings suffer from depressive symptoms. Treatment is successful, with response rates between 60 and 80 percent, but the response generally takes longer than that for other adults. In addition to reviewing information on prevalence and treatment, this section also discusses depression's course, barriers to diagnosis, interactions with physical disease, consequences, cost, and etiology. Diagnosis of Major and "Minor" Depression The term "major depression" refers to conditions with a major depressive episode, such as major depressive disorder, bipolar disorder, and related conditions. Major depressive disorder, the most common type of major depression in adults, is characterized by one or more episodes that include the following symptoms: depressed mood, loss of interest or pleasure in activities, significant weight loss or gain, sleep 346 disturbance, psychomotor agitation or retardation, fatigue, feelings of worthlessness, loss of concentration, and recurrent thoughts of death or suicide. (For further discussion of the diagnosis of major depressive disorder, see Chapter 4.) Major depressive disorder cannot be diagnosed if symptoms last for less than 2 months after bereavement, among other exclusionary factors (DSM-IV). Most older patients with symptoms of depression do not meet the full criteria for major depression. The new diagnostic entity of minor depression has been proposed to characterize some of these patients. "Minor depression," a subsyndromal form of depression, is not yet recognized as an official disorder, and DSM-IV proposes further research on it. Minor depression is more frequent than major depression, with 8 to 20 percent of older community residents displaying symptoms (Alexopoulos, 1997; Gallo & Lebowitz, 1999). The diagnosis of minor depression is not yet standardized; the research criteria proposed in DSM-IV are the same as those for major depression, but a diagnosis would require fewer symptoms and less impairment. Minor depression, in fact, is not thought to be a single syndrome, but rather a heterogeneous group of syndromes that may signify either an early or residual form of major depression, a chronic, though mild, form of depression that does not present with a full array of symptoms at any one time, called dysthymia. or a response to an identifiable stressor (Judd et al., 1994; Pincus & Wakefield-Davis, 1997). Since depression is more difficult to assess and detect in older adults, research is needed on what clinical features might help identify older adults at increased risk for sustained depressive symptoms and suicide. Both major and minor depression are associated with significant disability in physical, social, and role functioning (Wells et al., 1989). The degree of disability may not be as great with minor depression, but because of its higher prevalence, minor depression is associated with 5 1 percent more days lost from work than is major depression (Broadhead et al., 1990). Major and minor depression are associated with high Older Adults and Mental Health health care utilization and poor quality of life (see Unutzer et al.. 1997a, for a review). Late-Onset Depression Major or minor depression diagnosed with first onset later than age 60 has been termed late-onset depression. Late-onset depression is not a diagnosis; rather, it refers to a subset of patients with major or minor depression whose later age at first onset imparts slightly different clinical characteristics, suggesting the possibility of distinct etiology. Late-onset depression shares many clinical characteristics with early-onset depression, yet some distinguishing features exist. Patients with late-onset depression display greater apathy (Krishnan et al., 1995) and less lifetime personality dysfunction (Abrams et al., 1994). Cognitive deficits may be more prominent, with more impaired executive and memory functioning (Salloway et al., 1996) and greater medial temporal lobe abnormalities on magnetic resonance imaging, similar to those seen in dementia (Greenwald et al., 1997). Other studies, however, have shown no differences in cognition between patients with late- and early-onset depression (Holroyd & Duryee. 1997). The risk of recurrence of depression is relatively high among patients with onset of depression after the age of 60 (Reynolds, 1998). Risk factors for late-onset depression, based on results of prospective studies, include widowhood (Bruce et al., 1990; Zisook & Shuchter, 1991; Harlow et al., 1991; Mendes de Leon et al., 1994), physical illness (Cadoret & Widmer, 1988; Harlow et al., 1991: Bachman et al., 1992), educational attainment less than high school (Wallace & O'Hara. 1992; Gallo et al.. 1993),impaired functional status (Bruce &Hoff, 1994) and heavy alcohol consumption (Saunders et al., 199 1). Prevalence and Incidence Estimates of the prevalence of major depression vary widely, depending on the definition and the procedure used for counting persons with depression (Gallo & Lebowitz, 1999). Researchers applying DSM criteria for major depression have found 1-yearU.S. prevalence rates of about 5 percent or less in older people (Gurland 347 Mental Health: A Report of the Surgeon General et al., 1996). The prevalence of major depression declines with age, while depressive symptoms increase (symptoms that now might warrant classification as minor depression). Romanoski and colleagues, on the basis of psychiatric interviews of adults in the Baltimore Epidemiologic Catchment Area, showed that major depression declined with advancing age (Romanoski et al., 1992). Prevalence estimates derived from symptom scales are consistent with the clinical impression that prevalence of depressive symptoms increases with advancing age. Depressive symptoms and syndromes have been identified in 8 to 20 percent of older community residents (Alexopoulos, 1997; Gallo & Lebowitz, 1999) and 17 to 35 percent of older primary care patients (Gurland et al., 1996). Several incidence studies based on DSM criteria reflect a similar pattern of decline in rates of major depression with advancing age (Eaton et al., 1989; Eaton et al., 1997). The 13-year followup of the participants of the Baltimore Epidemiologic Catchment Area (ECA) sample revealed, however, that the distribution of the incidence of DSM-based major depression across the life span was bimodal, with a primary peak in the fourth decade and a secondary peak in the sixth decade (Eaton et al., 1997). In contrast to studies based on DSM criteria, several incidence studies report increased rates of depressive symptoms with age. A Swedish study reported that rates of depressive symptoms were highest in the older age groups and that rates of depression had increased in the interval from 1947-1957 to 1957-1972 (Hagnell et al., 1982). Incidence studies reveal an increased risk of depression among women as they age, consistent with findings based on prevalence surveys (Hagnell et al., 1982; Eaton et al., 1989; Gallo et al., 1993). Thus, both prevalence and incidence studies that rely on DSM-based diagnosis of major depression suggest a decline with age, whereas symptom-based assessment studies show increased rates of depression among older adults, especially women. Evidence that older adults are less likely than younger persons to report feelings of dysphoria (i.e., sadness. unhappiness, or irritability) suggests that the standard criteria for depression may be more difficult to apply to older adults (Gallo et al., 1994) or that older adults are disinclined to report such feelings. Other mood disorders, such as dysthymia, bipolar disorder, and hypomania,' also are present in older individuals. Little difference has been found in the prevalence of affective disorders between African Americans and whites over the age of 65 (Weissman et al., 199 1). The prevalence of bipolar disorder among people aged 65 and over is reportedly less than 1 percent (Robins & Regier, 1991). Approximately 5 to 10 percent of older patients presenting with mood disorders are manic or hypomanic (Yassa et al., 1988). However, these mood disorders will not be the focus of this section of the report, as they are much less common in older adults than depression. Barriers to Diagnosis and Treatment The underdiagnosis and undertreatment of depression in primary care represent a serious public health problem (NIH Consensus Development Panel on Depression in Late Life, 1992). One study found that only about 11 percent of depressed patients in primary care received adequate antidepressant treatment (in terms of dose and duration of pharmacotherapy), while 34 percent received inadequate treatment and 55 percent received no treatment (Katon et al., 1992). There are many barriers to the diagnosis of depression in late life. Some of these barriers reflect the nature of the disorder: depression occurs in a complex medical and psychosocial context. In the elderly, the signs and symptoms of major depression are frequently attributed to "normal aging," atherosclerosis, Alzheimer's disease, or any of a host of other age- associated afflictions. Psychosocial antecedents such as loss, combined with decrements in physical health and sensory impairment, can also divert attention from clinical depression. Another reason for the underdiagnosis is that older patients are less likely to report symptoms of dysphoria and worthlessness, which are often considered hallmarks of the diagnosis of depression. The ' Hypomania is marked by abnormally elevated mood, but the symptoms are not severe enough for mania (see Chapter 4). 348 consequences of underdiagnosis of this subset of patients can be severe. On the basis of a followup of older adults in the Baltimore Epidemiologic Catchment Area sample, persons with depressive symptoms (e.g., sleep and appetite disturbance) without sadness (e.g., hopelessness, worthlessness, thoughts of death, wanting to die, or suicide) were at increased risk for subsequent functional impairment, cognitive impairment, psychological distress, and death over the course of the 13-year interval (Gallo et al., 1997). Other barriers to diagnosis are patient related. Depression can and frequently does amplify physical symptoms, distracting patients' and providers' attention from the underlying depression; and many older patients may deny psychological symptoms of depression or refuse to accept the diagnosis because of stigma. This appears to be particularly the case with older men, who also have the highest rates of suicide in later life (Hoyert et al., 1999). Provider-related factors also appear to play a role in underdetection of depression and suicide risk. Providers may be reluctant to inform older patients of a diagnosis of depression, owing to uncertainty about diagnosis, reluctance to stigmatize, uncertainty about optimal treatment, concern about medication interactions or lack of access to psychiatric care, and continuing concern about the effectiveness and cost- effectiveness of treatment intervention (NIH Consensus Development Panel on Depression in Late Life, 1992; Unutzer et al., 1997a). Societal stereotypes about aging also can hamper efforts to identify and diagnose depression in late life. Many people believe that depression in response to the loss of a loved one, increased physical limitations, or changing societal role is an inevitable part of aging. Even physicians appear to hold such stereotyped views. Three-quarters of physicians in one study thought that depression "was understandable" in older persons (Gallo et al., in press), consistent with other studies (Bartels et al., 1997). Suicidal thoughts are sometimes considered a normal facet of old age. These mistaken beliefs can lead to underreporting of symptoms by patients and lack of effort on the part of family members to seek care for patients. Older Adults and Mental Health Finally, the health care system itself is increasingly restricting the time spent in patient care, forcing mental health concerns to compete with comorbid general medical conditions. Primary care physicians often report feeling too pressured for time to investigate depression in older people (Glasser & Gravdal, 1997). Given the inseparability of mental and general health in later life particularly, this trend is worrisome. Course Across the life span, the course of depression is marked by recurrent episodes of depression followed by periods of remission. In late life, the course of depression tends to be more chronic than that in younger adults (Alexopoulos & Chester, 1992; Callahan et al., 1994; Cole & Bellavance, 1997). This means that recurrences extend for longer duration, while intervals of remission are shorter. It also means that cycles of recurrence and remission persist over a longer period of time. Patients' response to treatment is highly variable, and the determinants of treatment response and its temporal profile are the subjects of intense research (Reynolds & Kupfer, 1999). A slower, less consistent response, which suggests a higher probability of relapse, is related to older age, presence of acute and chronic stressors, lower levels of perceived social support, higher levels of pretreatment anxiety, and greater biologic dysregulation as reflected in higher levels of rapid eye movement sleep (Dew et al., 1997). The temporal profile of the initial treatment response also may provide important clues about which patients are likely to fare well on maintenance treatment and which ones are likely to have a brittle treatment response and stormy long-term course. A recent update of the NIH Consensus Develop- pment Conference on the Diagnosis and Treatment of Late-Life Depression emphasized the need for more data to guide long-term treatment planning, especially in patients 70 years and older with major depression (Lebowitz et al., 1997). Little is currently known about differences, if any, in speed and rate of remission, relapse, recovery, and recurrence in patients aged 60 to 69 and those aged 70 and above. In a study at the University of Pittsburgh, two groups of patients (ages 349 Mental Health: A Report of the Surgeon General 60 to 69 and 70+) showed comparable times to remission and recovery, as well as similar absolute rates of remission during acute therapy, relapse during continuation therapy, and recovery. However, patients aged 70 and older experienced a significantly higher rate of recurrence during the first year of maintenance therapy (Reynolds. 1998). Thus, the course of depression and its interaction with treatment are influenced by age. This highlights the importance of research targeted at older age groups instead of reliance on extrapolations from younger patients. Interactions With Somatic Ihess Late-life mental disorders are often detected in association with somatic illness (Reynolds & Kupfer, 1999). The prevalence of clinically significant depression in later life is estimated to be highest- approximately 25 percent-among those with chronic illness. especially with ischemic heart disease, stroke, cancer, chronic lung disease, arthritis, Alzheimer's disease, and Parkinson's disease (Borson et al., 1986; Blazer, 1989; Oxman et al., 1990; Callahan et al., 1994; Beekman et al., 1995; Borson, 1995). The relationship between somatic illness and mental disorders is likely to be reciprocal, but the mechanisms are far from understood. Biological and psychological factors are thought to play a role (Unutzer et al., 1997a). The nature and course of late-life depression can be greatly affected by the coexistence of one or more other medical conditions. Insomnia and sleep disturbance play a large role in the clinical presentation of older depressed patients. Sleep complaints over time in community-residing older people have been found to vary with the intensity of depressive symptoms (Rodin et al., 1988). Sleep disturbances in older men and women have also been recently linked to poor health, depression, angina. limitations in activities of daily living, and chronic use of benzodiazepines (Newman et al., 1997). Furthermore, persistent or residual sleep disturbance in older patients with prior depressive episodes predicts a less successful maintenance response to pharmacotherapy (Buysse et al., 1996). The prevalence of chronic. primary insomnia in older adults is estimated at 5 to 10 percent (Ohayon et al., 1996). Relatively little is known about the etiology or pathophysiology of chronic primary insomnia and why it constitutes a risk factor for depression in older adults. An important issue for further research is whether effective treatment for chronic insomnia could prevent the subsequent development of clinical depression in midlife and later. Consequences of Depression The most serious consequence of depression in later life-especially untreated or inadequately treated depression-is increased mortality from either suicide or somatic illness. Older persons (65 years and above) have the highest suicide rates of any age group. The suicide rate for individuals age 85 and older is the highest, at about 21 suicides per 100,000, a rate almost twice the overall national rate of 10.6 per 100,000 (CDC, 1999). The high suicide rate among older people is largely accounted for by white men, whose suicide rate at age 85 and above is about 65 per 100,000 (CDC, 1999). Trends from 1980 to 1992 reveal that suicide rates are increasing among more recent cohorts of older persons (Kachur et al., 1995). Since national statistics are unlikely to include more veiled forms of suicide, such as nursing home residents who stop eating, estimates are probably conservative. Suicide in older adults is most associated with late- onset depression: among patients 75 years of age and older, 60 to 75 percent of suicides have diagnosable depression (Conwell, 1996). Using a "psychological autopsy," Conwell and coworkers investigated all suicides within a geographical region and found that with increasing age, depression was more likely to be unaccompanied by other conditions such as substance abuse (Conwell et al., 1996). While thoughts of death may be developmentally expected in older adults, suicidal thoughts are not. From a stratified sample of primary care patients over age 60, Callahan and colleagues estimated the prevalence of specific suicidal thoughts at 0.7 to 1.2 percent (Callahan et al., 1996b). Unfortunately, no demographic or clinical variables distinguished depressed suicidal patients from depressed nonsuicidal patients (Callahan et al., 1996b). 350 Swedish researchers found much higher rates of suicidal ideation after interviewing adults aged 85 years and older. They found a l-month prevalence of any suicidal feelings in 9.6 percent of men and 18.7 percent of women (Skoog et al., 1996). Suicidal feelings were strongly associated with depression. For example, 6.2 percent of the participants who did not meet criteria for depression or anxiety reported suicidal thoughts, while almost 50 percent of those meeting criteria for depression reported such thoughts. The higher prevalence of suicidal feelings in this study, compared with that cited earlier, is likely due to the older age of subjects and to methodological differences. Studies of older persons who have committed suicide have revealed that older adults had seen their physician within a short interval of completing suicide, yet few were receiving mental health treatment. Caine and coworkers studied the records of 97 adults aged 50 years and older who completed suicide (Caine et al., 1996). Of this group, 51 had seen their primary care physician within 1 month of the suicide. Forty-five had psychiatric symptoms. Yet in only 29 of the 45 individuals were symptoms recognized, in only 19 was treatment offered, and in only 2 of these 19 cases was the treatment rendered considered adequate. Treatment was deemed inadequate if an incorrect medicine (such as a benzodiazepine for severe major depression) or inadequate dose was prescribed. This line of research highlights important opportunities for suicide prevention. Depression also can lead to increased mortality from other diseases, such as heart disease and possibly cancer. How depression exerts these effects is not yet understood. In nursing home patients, major depression increases the likelihood of mortality by 59 percent, independent of physical health measures (Rovner, 1993). In the case of myocardial infarction, depression elevates mortality risk fivefold (Frasure-Smith et al., 1993. 1995). Depression also has been linked to the onset of cancer, but results have been inconsistent. Yet a new epidemiological study, considered the most compelling to date, finds that chronic depression (lasting an average of about 4 years) raises the risk of cancer by 88 percent in older people (Penninx et al., Older Adults and Mental Health 1998). Thus, increased understanding of depression in older people may be, literally, a matter of life and death. cost The high prevalence of depressive syndromes and symptoms in older adults exacts a large economic toll. Depression as a whole for all age groups is one of the most costly disorders in the United States (Hirschfeld et al., 1997). The direct and indirect costs of depression have been estimated at $43 billion each year, not including pain and suffering and diminished quality of life (Finkelstein et al., 1996). Late-life depression is particularly costly because of the excess disability that it causes and its deleterious interaction with physical health. Older primary care patients with depression visit the doctor and emergency room more often, use more medication, incur higher outpatient charges. and stay longer at the hospital (Callahan et al., 1994: Cooper-Patrick et al., 1994; Callahan & Wolinsky, 1995; Unutzer et al., 1997b). Etiology of Late-Onset Depression Despite major advances. the etiology of depression occurring at any age is not fully understood, although biological and psychosocial factors clearly play an important and interactive role. With respect to late-onset depression, several risk factors have been identified. Persistent insomnia, occurring in 5 to 10 percent of older adults, is a known risk factor for the subsequent onset of new cases of major depression both in middle-aged and older persons (Ford & Kamerow, 1989). Grief following the death of a loved one also is an important risk factor for both major and minor depression. At least 10 to 20 percent of widows and widowers develop clinically significant depression during the first year of bereavement. Without treatment, such depressions tend to persist, becoming chronic and leading to further disability and impairments in general health (Zisook & Shuchter, 1993). A final pathway to late-onset depression, suggested by computed tomography and magnetic resonance imaging studies, may involve structural, neuroanatomic factors. Enlarged lateral 351 Mental Health: A Report of the Surgeon General ventricles, cortical atrophy, increased white matter hyperintensities, decreased caudate size, and vascular lesions in the caudate nucleus appear to be especially prominent in late-onset depression associated with vascular risk factors (Ohayon et al., 1996; Baldwin & Tomenson, 1995). These findings have generated the vascular hypothesis of late-onset depression; namely, that even in the absence of a clear stroke, disorders that cause vascular damage, such as hypertension, coronary artery disease, and diabetes mellitus, may induce cerebral pathology that constitutes a vulnerability for depression (Alexopoulos et al., 1997; Steffens & Krishnan, 1998). Treatment of Depression in Older Adults A broad array of effective treatments, both pharmacological and psychosocial, exists for depression. Despite the pervasiveness of depression and the existence of effective treatments, a substantial fraction of patients receive either no treatment or inadequate treatment, as described earlier. Some of the barriers relate to underdiagnosis, while others relate to treatment where there are patient, provider, and clinical barriers (for more details, see Unutzer et al., 1996). Pharmacological Treatment There is consistent evidence that older patients, even the very old, respond to antidepressant medication (Reynolds & Kupfer, 1999). About 60 to 80 percent of older patients respond to treatment, while the placebo response rate is about 30 to 40 percent (Schneider, 1996). These rates are comparable to those in other adults (see Chapter 4). Treatment response is typically defined by a significant reduction-usually 50 percent or greater-in symptom severity. Yet because patients 75 years old and older typically have higher prevalence of medical comorbidity, both they and their physicians are often reluctant to add another medication to an already complex regimen in a frail individual. However, newer antidepressants are less frequently associated with factors contraindicating their use. Moreover, because the very old are also at high risk for adverse medical outcomes of depression and for suicide, treatment may be favored. Despite the availability of effective treatments, a minority of patients properly diagnosed with depression receive adequate dosage and duration of pharmacotherapy, as noted earlier. In general, pharmacological treatment of depression in older people is similar to that in other adults, but the selection of medications is more complex because of side effects and interactions with other medications for concomitant somatic disorders. Treatment of minor depression is generally the same as treatment for major depression, but there is not a large body of evidence to support this practice. Studies are under way to identify effectivE pharmacological treatments for minor depression (Lebowitz et al., 1997). The following paragraphs describe the major classes of medications for treatment of depression in older adults. They focus on side effects and other concerns that distinguish the treatment of depression in older adults from that in younger ones. Tricyclic Antidepressants Tricyclic antidepressants (TCAs) have been widely used to treat depressed patients of all ages. Alexopoulos and Salzman (1998) reviewed studies of TCAs in older depressed patients and concluded that these compounds are similar in efficacy across the age spectrum, but the side effect profiles differ considerably. Widespread use of the TCAs in older adults is limited by adverse reactions. While anticholinergic effects such as dry mouth, urinary retention, and constipation can be annoying in younger adults, they can lead to severe problems in older adults. For example, constipation can lead to impaction, and dry mouth can prevent the wearing of dentures. The anticholinergic effects of the TCAs may also cause tachycardia or arrhythmias and can further compromise preexisting cardiac disease (Roose et al., 1987; Glassman et al., 1993). Central anticholinergic effects may result in acute confusional states or memory problems in the depressed older adult (Branconnier et al., 1982). Orthostatic hypotension, which may lead to falls and hip fractures, is also a concern when the TCAs are administered. Nevertheless, TCAs are still frequent- ly used in older adults. 352 Selective Serotonin Reuptake Inhibitors and Other Newer Antidepressants Selective serotonin reuptake inhibitors (SSRIs) such as fluoxetine, paroxetine, and sertraline, whose use is increasing across age groups. may be especially useful in the treatment of late-life depression, because these agents are reported to have fewer anticholinergic and cardiovascular side effects than the TCAs. The more commonly observed side effects with SSRIs include sexual dysfunction and gastrointestinal effects such as nausea, vomiting, and loose stools. Treatment with the SSRIs may also produce insomnia, anxiety, and restlessness. The few studies that have examined the efficacy of these compounds in older adults have shown efficacy similar to the TCAs and fewer side effects (see Small & Saliman, 1998, for a review). While the relative efficacy of SSRIs and TCAs is still debated, SSRIs are easier to prescribe because of simpler dosing patterns and more manageable side effects. One concern when prescribing the SSRIs in older adults is the potential for drug-drug interactions. This is of clinical importance since older adults commonly receive a large number of medications. The SSRIs vary in their inhibition of the cytochrome ~450 family of isoenzymes. Knowledge of these patterns of inhibition in the SSRIs and other medications commonly used in older adults (such as other psychoactive compounds, calcium channel blockers, or warfarin) can help to avoid or minimize interactions. Other newer non-SSRI antidepressants (venlafaxine, bupropion, trazodone, and nefazodone) are often suggested for treating later life depression because their side effects are better tolerated by older adults. Some compounds that are useful in other individuals may be less useful for treatment of older patients. For example, despite evidence of the efficacy of monamine oxidase inhibitors (see Alexopoulos & Salzman. 1998, for a review), clinical use is often restricted to patients who are refractory to other antidepressant drugs. This is due to potentially life-threatening pharmacodynamic interactions with sympathomimetic drugs or tyramine-containing foods and beverages. The sympathomimetic amines (e.g., Older Adults and Mental Health phenylpropanolamine and pseudoephedrine) may be present in over-the-counter decongestant products that older patients are prone to self-administer. An additional concern is the risk of orthostatic hypotension, which occurs even at therapeutic doses (Alexopoulos & Salzman, 1998). In addition, bupropion has been shown in older patients to be as effective as TCAs (Branconnier et al., 1983; Kane et al., 1983). Although generally well tolerated, its use requires added caution because of an increased risk of seizures and thus should be avoided in patients with seizure disorder or focal central nervous system disease. Its advantages include a relatively low incidence of cardiovascular complications and a lack of confusion. Multimodal Therapy Combining pharmacotherapy with psychosocial interventions also appears to be effective in older depressed patients. A high response rate of about 80 percent was found for acute and continuation treatment with combined nortriptyline and interpersonal psychotherapy. The response rate was similar between so-called "young old" patients (primarily in their 60s and early 70s) and patients in their 30s and 40s (Reynolds et al., 1996). Yet older patients showed a somewhat longer time to remission than did other patients (about 2 weeks longer) and twice the rate of relapse during continuation treatment (about 15 percent versus 7 percent). However, because the trial was not controlled, it is not known whether multimodal treatment was more effective than either pharmacological or psychosocial treatment alone. Treatment resistance-defined by the lack of recovery in spite of combined treatment with nortriptyline and interpersonal psychotherapy-was seen in about 18 percent of older patients with recurrent major depression (nonpsychotic unipolar depression) (Little et al., 1998). Nortriptyline and interpersonal psychotherapy (IPT) have been shown to be effective maintenance treatments for late-life depression. After 3 years of comparing various treatments, the percentage of older adults who did not experience recurrence were 57 percent of older adults receiving nortriptyline, 36 353 Mental Health: A Report of the Surgeon General percent receiving IPT, and 80 percent of those receiving nortriptyiine plus IPT. Those receiving a placebo and routine clinical visits had a 90 percent recurrence rate (Reynolds et al., 1999). Course of Treatment Although 60 to 80 percent of older patients with moderate to severe unipolar depression' can be expected to respond well to antidepressant treatment (especially combined treatment with medication and psychotherapy), the clinical response to antidepressant treatment in later life follows a variable course, with a median time to remission of 12 weeks (J. L. Cummings & D. J. Kupfer, personal communication, 1999). Thus, treatment response takes 1 month or more longer than * that for other adults, for whom treatment response takes an average of 6 to 8 weeks (see Chapter 4). In addition to highly variable trajectories to recovery, reliable prediction of response status (recovery/nonrecovery) is generally not possible in older adults before 4 to 5 weeks of treatment. The delayed onset of antidepressant activity in older adults leads to unique problems. Suffering and disability are prolonged, which often reduces compliance and may increase risk for suicide. The development of strategies to accelerate treatment response and to improve the early identification of nonresponders would be an important advance (Reynolds & Kupfer, 1999). Data from naturalistic studies have identified several predictors of relapse and recurrence in late-life depression, including a history of frequent episodes, first episode after age 60, concurrent somatic illness, especially a history of myocardial infarction or vascular disease. high pretreatment severity of depression and anxiety, and cognitive impairment, especially frontal lobe dysfunction. These factors appear to interact with low treatment intensity -that is, at dosage and duration below recommended levels-in determining more severe courses of illness. Despite the evidence that high treatment intensity is effective in preventing relapse and recurrence (Reynolds et al., 1995), naturalistic ' Unipolar depression refers to the depression in patients with major depressive disorders but not to the depression in patients with bipolar disorders. studies have shown that intensity of treatment prescribed by psychiatrists begins to decline within 16 weeks of entry and approximately 10 weeks prior to recovery (Alexopoulos et al., 1996). Residual symptoms of excessive anxiety and worrying predict early recurrence after tapering continuation treatment in older depressed patients (Meyers, 1996). Although progress has been made in identifying effective pharmacological and combined treatments for late-life depression, there is a need for more outcome studies with newer antidepressants. In addition, studies examining effectiveness in real-world settings-rather than in clinical trials conducted in academic clinical sites-are particularly crucial in the older population because of medical comorbidity and provision of care in primary, rather than specialty, care. Electroconvulsive Therapy Electroconvulsive therapy (ECT) is regarded as an effective intervention for some forms of treatment- resistant depression across the life cycle (NIH & NIMH Consensus Conference, 1985; Depression Guideline Panel, 1993). It may offer a particularly attractive benefit:risk ratio in older persons with depression (NIH Consensus Development Panel on Depression in Late Life, 1992; Sackeim, 1994). Chapter4 reviews research on ECT and considers risk-benefit issues and controversy surrounding them. As described there, ECT entails the electrical induction of seizures in the brain, administered during a series of 6 to 12 treatment sessions on an inpatient or outpatient basis. Practice guidelines recommend that ECT should be reserved for severe cases of depression, particularly with active suicidal risk or psychosis; patients unresponsive to medications; and those who cannot tolerate medications (NIH & NIMH Consensus Conference, 1985; Depres- sion Guideline Panel, 1993). For those patients, the response rate to ECT is on the order of 50 to 70 percent, and there is no evidence that ECT is any less effective in older individuals than younger ones (Sackeim, 1994; Weiner & Krystal, 1994). ECT is advantageous for older people with depression because of the special problems they encounter with medications, including sensitivity to anticholinergic 354 toxicity, cardiac conduction slowing, and hypotension (see above). Although the newer antidepressants offer a more favorable side-effect profile than do the older tricyclics, their efficacy in melancholic depression, for which ECT is particularly helpful (Rudorfer et al., 1997), is not yet firmly established. Moreover, as noted earlier, older adults respond more slowly than younger ones to antidepressant medications, rendering the faster onset of action of ECT another advantage in the older patient (Markowitz et al., 1987). Immobility and reduced food and fluid intake in the older person with depression may pose a greater imminent physical health risk than would typically be the case in a younger patient, again strengthening the case for considering ECT early in the treatment hierarchy (Sackeim, 1994). Although the clinical+effectiveness of ECT is documented and acknowledged, the treatment often is associated with troubling side effects, principally a brief period of confusion following administration and a temporary period of memory disruption (Rudorfer et al., 1997). As described in Chapter 4, there may also be longer term memory losses for the time period surrounding the use of ECT. Although the exception rather than the rule; persistent memory loss following ECT is reported. Its actual incidence is unknown. There are no absolute medical contraindications' to ECT. However, a recent history of myocardial infarct, irregular cardiac rhythm, or other heart conditions suggests the need for caution due to the risks of general anesthesia and the brief rise in heart rate, blood pressure, and load on the heart that accompany ECT administration. On the other hand, the safety of ECT is enhanced by the time-limited nature of treatment sessions, which enables this intervention to be administered under controlled conditions, for example, with a cardiologist or other specialist in attendance. Following completion of a course of ECT, maintenance treatment. typically with antidepressant or mood- stabilizing medication or less frequent maintenance ECT, in most cases is required to prevent relapse (Rudorfer et al., 1997). Older Adults and Mental Health Psychosocial Treatment of Depression Most research to date on psychosocial treatment of mental disorders has concentrated on depression. These studies suggest that several forms of psychotherapy are effective for the treatment of late-life depression. including cognitive-behavioral therapy, interpersonal psychotherapy, problem-solving therapy, brief psycho- dynamic psychotherapy, and reminiscence therapy, an intervention developed specifically for older adults on the premise that reflection upon positive and negative past life experiences enables the individual to overcome feelings of depression and despair (Butler. 1974; Butler et al., 1991). Group and individual formats have been used successfully. A meta-analysis of 17 studies of cognitive. behavioral, brief psychodynamic. interpersonal, remini- scence, and eclectic therapies for late-life depression found treatment to be more effective than no treatment or placebo (Scogin & McElreath. 1994). The following paragraphs spotlight some of the key studies incorporated into this meta-analysis and provide evidence from newer studies. Cognitive-behavioral therapy is designed to modify thought patterns, improve skills, and alter the emotional states that contribute to the onset, or perpetuation, of mental disorders. In a 2-year followup study of cognitive-behavioral therapy, 70 percent of all patients studied no longer met criteria for major depression and maintained treatment gains (Gallagher-Thompson et al.. 1990). In another trial, group cognitive therapy was found to be effective. Older patients with major depression partially randomized to receive group cognitive therapy with alprazolam (a benzodiazepine) or group cognitive therapy with placebo had more improvement in depressed mood and sleep efficiency than patients who received alprazolam alone or placebo alone (Beutler et al., 1987). Cognitive-behavioral therapy also has been demonstrated to be effective in other late-life disorders. including anxiety disorders (Stanley et al., 1996; Beck & Stanley, 1997). Cognitive-behavioral therapy's effectiveness for mood symptoms in Alzheimer's disease is discussed in the section on psychosocial treatments of Alzheimer's disease. 355 Mental Health: A Report of the Surgeon General Problem-solving therapy postulates that deficiencies in social problem-solving skills enhance the risk for depression and other psychiatric symptoms. Through improving problem-solving skills, older patients are given the tools to enable them to cope with stressors and thereby experience fewer symptoms of psychopathology (Hawton & Kirk, 1989). Problem- solving therapy has been found effective in the treatment of depression of older patients. For example, problem-solving therapy was found to significantly reduce symptoms of major depression, leading to the greatest improvement in a randomized controlled study comparing problem-solving therapy, reminiscence therapy, and placement on a waiting list for treatment (Arean et al., 1993). In a ,randomized study of depressed younger primary care patients, six sessions of problem-solving therapy were as effective as amitriptyline, with about 50 to 60 percent of patients in each group recovering (Mynors-Wallis et al., 1995). Interpersonal psychotherapy was initially designed as a time-limited treatment for midlife depression. It focuses on grief, role disputes, role transitions, and interpersonal deficits (Klerman et al., 1984). This form of treatment may be especially meaningful for older patients given the multiple losses, role changessocial isolation, and helplessness associated with late-life depression. Controlled trials suggest that interpersonal psychotherapy alone, or in combination with pharmaco- therapy, is effective in all phases of treatment for late- life major depression. Interpersonal psychotherapy was as effective as the antidepressant nortriptyline in depressed older outpatients, and both were superior to placebo (Sloane et al., 1985; Reynolds et al., 1992; Schneider, 1995). In an open trial, a treatment protocol combining interpersonal psychotherapy with nortriptyline and psychoeducational support groups led to minimal attrition and high remission rates (approximately 80 percent) in older patients with recurrent major depression (Reynolds et al., 1992, 1994). Finally, interpersonal psychotherapy also is effective in the treatment of depression following bereavement (Pastemak et al., 1997). Brief psychodynamic therapy, typically of 3 to 4 months' duration. also is successful in older depressed patients. Brief psychodynamic therapy is distinguished from traditional psychodynamic therapy primarily by duration of treatment. The goals of brief psycho- dynamic therapy vary according to patients' medical health and function. In disabled older people, the purpose of psychodynamic psychotherapy is to facilitate mourning of lost capacities, promote acceptance of physical limitations, address fears of dependency, and promote resolution of interpersonal difficulties with family members (Lazarus & Sadavoy, 1996). In older patients who are not disabled, psychodynamic psychotherapy deal; with the resolution of interpersonal conflicts, adaptation to loss and stress, and the reconciliation of personal accomplishments and disappointments (Pollock, 1987). Brief psychodynamic therapy has been found to be as effective as cognitive- behavioral therapy in reducing symptoms of late-life major depression. An early study found brief psychodynamic therapy to yield higher relapse and recurrence rates than did cognitive and behavioral therapy (Gallagher&Thompson, 1982). However, with a greater number of patients, brief psychodynamic therapy was determined to be as effective as cognitive and behavioral therapy (and superior to being on a waiting list) in preventing recurrences of major depression up to 2 years after treatment (Gallagher-Thompson et al., 1990). Alzheimer's Disease Alzheimer's disease, a disorder of pivotal importance to older adults, strikes 8 to 15 percent of people over the age of 65 (Ritchie & Kildea, 1995). Alzheimer's disease is one of the most feared mental disorders because of its gradual, yet relentless, attack on memory. Memory loss, however, is not the only impairment. Symptoms extend to other cognitive deficits in language, object recognition, and executive functioning.3 Behavioral symptoms-such as psychosis, agitation, depression, and wandering-are common and impose tremendous strain on caregivers. Diagnosis is challenging because of the lack of 3 Executive functioning refers to the ability to plan, organize, sequence, and abstract. 356 biological markers, insidious onset, and need to exclude other causes of dementia. This section covers assessment and diagnosis, behavioral symptoms, course, prevalence and incidence, cost, etiology, and treatment. It features Alzheimer's disease because it is the most prevalent form of dementia. However, many of the issues raised also pertain to other forms of dementia, such as multi- infarct dementia, dementia of Parkinson's disease, dementia of Huntington's disease, dementia of Pick's disease, frontal lobe dementia, and others. Assessment and Diagnosis of Alzheimer's Disease Mild Cognitive Impairm&t Declines in cognitive functioning have been identified both as part of the normal process of aging and as an indicator of Alzheimer's disease. DSM-IV first designated this as "age-related cognitive decline" and, more recently, as "mild cognitive impairment" (MCI). MCI characterizes those individuals who have a memory prcblem but do not meet the generally accepted criteria for Alzheimer's disease such as those issued by the National Institute of Neurological and Communicative Disorders and Stroke-Alzheimer's Disease and Related Disorders Association or DSM-IV. MCI is important because it is known that a certain percentage of patients will convert to Alzheimer's disease over a period of time (probably in the range of 15 to 20 percent per year). Thus, if such individuals could be identified reliably, treatments could be given that would delay or prevent the progression to diagnosed Alzheimer's disease. This is the rationale for the Alzheimer's Disease Cooperative Study trial of vitamin E or donepezil for MCI, which began in 1999, and it is also the basis for the use of neuroimaging in early diagnosis. The evaluation of MCI spans the boundary between normal aging and Alzheimer's disease, and this topic is being evaluated in a number of research groups. The diagnosis of Alzheimer's disease depends on the identification of the characteristic clinical features and on the exclusion of other common causes of Older Adults and Mental Health dementia. There are currently no biological markers for Alzheimer's disease except for pathological verification by biopsy or at autopsy (or through rare autosomal dominant mutations), With the reliance on clinical criteria and the need for exclusion of other causes of dementia, the current approach to Alzheimer's disease diagnosis is time- and labor-intensive, costly, and largely dependent on the expertise of the examiner. Although genetic risk factors, such as APO-E status (see etiology section), give some indication of the relative risk for Alzheimer' s disease, they are as yet rarely useful on an individual basis. The diagnosis of Alzheimer`s disease not only requires the presence of memory impairment but also another cognitive deficit, such as language disturbance or disturbance in executive functioning. The diagnosis also calls for impairments in social and occupational functioning that represent a significant functional decline (DSM-IV). The other causes of dementia that must be ruled out include cerebrovascular disease, Parkinson's disease, Huntington's disease. subdural hematoma, normal-pressure hydrocephalus, brain tumor, systemic conditions (e.g., hypothyroidism. vitamin B ,* or folic acid deficiency, niacin deficiency, hypercalcemia, neurosyphilis, HIV infection), and substance-induced conditions. Some diagnostic schemes distinguish between possible, probable, and definite Alzheimer's disease (McKhann et al., 1984). With these criteria, probable Alzheimer's disease is confirmed to be Alzheimer's disease at autopsy with 85 to 90 percent accuracy (Galasko et al., 1994). Definite Alzheimer's disease can only be diagnosed pathologically through biopsy or at autopsy. The pathological hallmarks of Alzheimer's disease are neurofibrillary tangles (intracellular aggregates of a cytoskeletal protein called tau found in degenerating or dead brain cells) and neuritic plaques (extracellular deposits largely made up of a protein called amyloid P-peptide) (Cummings, 1998b). (See Figure 5-2.) The diagnosis of dementia can be complicated by the possibility of other disorders that coexist with, or share features of, Alzheimer's disease. For example, 357 Mental Health: A Report of the Surgeon General Figure 5-2. Neuritic plaques and many neurofibrillary tangles in the hippocampus of an Alzheimer's disease patient (Photo courtesy of Peter Davies, Ph.D., Department of Pathology, Albert Einstein College of Medicine.) . delirium is a common condition in older patients and can be confused with dementia in its acute stages. Other types of dementia, such as vascular dementia, share cognitive and behavioral symptoms with Alzheimer's disease, and thus may be difficult to distinguish from Alzheimer's disease. The cognitive symptoms of early Alzheimer's disease and those associated with normal age-related decline also may be similar. Finally, cognitive deficits are prominent in both late-life depression and schizophrenia. While the severity of deficits is less in these disorders than that in later stages of dementia, distinctions may be difficult if the dementia is early in its course. A further challenge in the identification of Alzheimer's disease is the widespread societal view of "senility" as a natural developmental stage. Early symptoms of cognitive decline may be excused away or ignored by family members and the patient, making early detection and treatment difficult. The clinical diagnosis of Alzheimer's disease relies on an accurate history of the patient's symptoms and rate of decline. Such information is often impossible to obtain from the patient due to the prominence of memory dysfunction. Family members or other informants are usually helpful, but their ability to provide useful information sometimes is hampered by denial or lack of knowledge about signs and symptoms of the disorder. With diagnosis so challenging, Alzheimer's disease and other dementias are currently under-recognized, especially in primary care settings, where most older patients seek care. In a study in the United Kingdom, O'Connor and colleagues found that general practitioners recognized only 58 percent of patients identified by research psychiatrists using a structured diagnostic interview (O'Connoret al., 1988). Similarly, in a study conducted in the United States, Callahan and colleagues found that only 3.2 percent of patients with mild cognitive impairment were recognized by general practitioners as having intellectual compromise, and only 23.5 percent of those with moderate to severe dementia were identified as having a dementia syndrome (Callahan et al., 1995). The reasons for primary care provider difficulty with diagnosis are speculated to include lack of knowledge or skills, misdiagnosis of depression as dementia, lack of time, and lack of adequate referrals to specialty mental health care. The urgency of addressing obstacles to recognition and accurate diagnosis is underscored by promising studies that point to the pronounced clinical advantages of early detection. Therapies that slow the progression of Alzheimer's disease or improve existing symptoms are likely to be most effective if given early in the clinical course. Recognition of early Alzheimer's disease, in addition to facilitating pharmacotherapy, has a variety of other benefits that improve the plight of patients and their families. Direct benefits to patients include improved diagnosis of other potentially reversible causes of dementia, such as hypothyroidism, and identification of sources of Alzheimer's disease's excess disability such as depression and anxiety that can be targeted with nonpharmacological interventions. Family members benefit from early detection by having more time to adjust and plan for the future and by having the opportunity for greater patient input into decisions regarding advanced directives while the patient is still at a mild stage of the illness (Cummings & Jeste, 1999). Diagnosis of Alzheimer's disease would be greatly improved by the discovery of a biological marker that correlates strongly with neuropathological signs of 358 Alzheimer's disease, reflects the severity of pathological changes in Alzheimer's disease, and precedes the appearance of clinical symptomatology. Ideally, such a marker also would be used to monitor the effectiveness of treatment on the clinical manifestations of Alzheimer's disease, would show specificity for Alzheimer's disease with few false positives (i.e., a diagnosis of Alzheimer's disease in someone who does not have the disease), and would be convenient and inexpensive enough to justify wide use, including screening (Cummings & Jeste, 1999). Discovery of such a marker is clearly a research priority. t?ehavioral Symptoms Alzheimer's disease is asociated with a range of symptoms evident in cognition and other behaviors; these include, most notably, psychosis, depression, agitation, and wandering. Other behavioral symptoms of Alzheimer' s disease include insomnia; incontinence; catastrophic verbal, emotional, or physical outbursts; sexual disorders; and weight loss. Behavioral symptoms, however, are not required for diagnosis. While behavioral symptoms have received less attention than cognitive symptoms, they have serious ramifications: patient and caregiver distress, premature institutionalization, and significant compromise of the quality of life of patients and their families (Rabins et al., 1982; Ferris et al., 1987; Finkel et al., 1996; Kaufer et al., 1998). Alzheimer's disease, especially behavioral symptoms, appears to place patients at risk for abuse by caregivers (Coyne et al., 1993). Behavioral symptoms occur at some point during the disease with high frequencies: 30 to 50 percent of individuals with Alzheimer's disease experience delusions, 10 to 25 percent have hallucinations, and 40 to 50 percent have symptoms of depression (Mega et al., 1996: Cummings et al., 1998b). Patients with psychotic disorders have greater cognitive impairment, more rapidly progressive dementia, and greater frontal and temporal dysfunction on functional brain imaging (Jeste et al., 1992; Sultzer et al., 1995). Patients with psychotic illness also exhibit more agitation, depression, wandering, anger, personality change, Older Adults and Mental Health family or marital problems, and lack of self-care (Rockwell et al., 1994). Depression in patients with Alzheimer's disease accelerates loss of functioning in everyday activities (Ritchie et al., 1998). Even modest reduction in behavioral symptoms can produce substantial improvements in functioning and quality of life. Course Patients with Alzheimer's disease experience a gradual decline in functioning throughout the course of their illness. Typically, a loss of 4 points per year on the Mini Mental Status Exam is detected, but there is a great deal of heterogeneity in the rate of decline (Olichney et al., 1998). Memory dysfunction is not only the most prominent deficit in dementia but also is the most likely presenting symptom. Deficits in language and executive functioning, while common in the disorder, tend to manifest later in its course (Locascio et al.. 1995). Depression is prevalent in the early stages of dementia and appears to recede with functional decline (Locascio et al., 1995). Although this may reflect decreasing awareness of depression by the patient, it also could reflect inadequate detection of depression by health professionals. Behavioral symptoms, such as agitation, seem to be more prevalent in the later stages of Alzheimer's disease (Patterson & Bolger, 1994); however, psychosis has been observed in patients with varying levels of severity (Borson & Raskind, 1997). The duration of illness, from onset of symptoms to death, averages 8 to 10 years (DSM-IV). Prevalence and hcidence Alzheimer's disease is a prominent disorder of old age: 8 to 15 percent of people over age 65 have Alzheimer' s disease (Ritchie 8z Kildea, 1995). The prevalence of dementia (most of which is accounted for by Alzheimer's disease) nearly doubles with every 5 years of age after age 60 (Jorm et al., 1987). Although more women than men have Alzheimer's disease (that is, the prevalence of the disease appears to be higher among women), this may reflect women's longer life spans, because studies do not show marked gender differences in incidence rates (Lebowitz et al., 1998). Incidence 359 Mental Health: A Report of the Surgeon General studies also reveal age-related increases in Alzheimer's disease (Breteler et al., 1992; Paykel et al., 1994; Hebert et al., 1995; Johansson & Zarit, 1995; Aevarsson & Skoog, 1996). One percent of those age 60 to 64 are affected with dementia; 2 percent of those age 65 to 69; 4 percent of those age 70 to 74; 8 percent of those 75 to 79; 16 percent of those age 80 to 84; and 30 to 45 percent of those age 85 and older (Jorm et al., 1987; Evans et al., 1989). The "graying of America" is likely to result in an increase in the number of individuals with Alzheimer's disease, yet shifts in the composition of the affected population also are anticipated. Increased education is correlated with a lower frequency of Alzheimer's disease (Hill et al., 1993; Katzman, 1993; Stem et al., 1994), and future cohorts are expected to have attained greater levels of education. Fdr example, the portion of those currently 75 years of age and older-those most vulnerable to Alzheimer's disease-with at least a high school education is 58.7 percent. Of those currently age 60 to 64 who will enter the period of maximum vulnerability by the year 2010, 75.5 percent have at least a high school education. A higher educational level among the at-risk cohort may delay the onset of Alzheimer's disease and thereby decrease the overall frequency of Alzheimer's disease (by decreasing the number of individuals who live long enough to enter the period of maximum vulnerability). However, this trend may be counterbalanced or overtaken by greater longevity and longer survival of affected individuals. Specifically, improvements in general health and health care may lengthen the survival of dementia patients, increasing the number of severely affected patients and raising their level of medical comorbidity. Similarly, through dissemination of information to patients and clinicians, better detection, especially of early-stage patients, is expected. Increased use of putative protective agents, such as vitamin E, also may increase the number of patients in the middle phases of the illness (Cummings & Jeste, 1999). cost The growing number of patients with Alzheimer's disease is likely to have serious public health and 360 economic consequences. Direct and indirect costs for medical and long-term care, home care, and loss of productivity for caregivers are estimated at nearly $100 billion each year (Ernst & Hay, 1994; National Institute on Aging, 1996). This economic burden is borne mostly by families of patients with Alzheimer's disease, although a significant portion of the direct costs is covered by Medicare, Medicaid, and private insurance companies. Costs are especially high among patients with behavioral symptoms, who often require earlier or more frequent institutionalization (Ferris et al., 1987). Etiology of Alzheimer's Dise'ase Siological Factors The etiology of Alzheimer's disease is still incompletely understood yet is thought to entail a complex combination of genetic and environmental factors. Genetic factors appear to play a significant role in the pathogenesis of Alzheimer's disease. In the familial form, Alzheimer's disease is caused by mutations in chromosomes 21, 14, and 1 and is transmitted in an autosomal dominant mode. Each of these mutations appears to result in overproduction of the protein found in neuritic plaques, /3-amyloid. Onset of the familial form is usually early, but the course and nature of the disorder appear to be influenced by environmental factors (Cummings et al., 1998b). However, the familial form accounts for only a small proportion of cases of Alzheimer's disease (less than 5 percent) (Cummings et al., 1998b). Approximately 50 percent of individuals with a family history of Alzheimer's disease, if followed into their 80s and 90s develop the disorder (Mohs et al., 1987). Certain genotypes (the pattern of genetic inheritance in an individual) appear to confer risk for the more common late-onset form of Alzheimer's disease. For example, the ApoE-e4 allele4 on chromosome 19, which increases the deposition of j3-amyloid, has been shown to increase risk for developing Alzheimer's disease (Corder et al., 1993). 4 An allele is a variant form of a gene. Other possible candidate genes are under study (Kang et al., 1997). Other biological risk factors for the development of Alzheimer's disease include aging and cognitive capacities (Cummings et al., 1998b). The mechanisms by which these traits confer increased risk have not yet been fully determined; however, several neurobiologic changes related to normal aging of the brain may play a role in the increased risk for Alzheimer's disease with increasing age. These include neuron and synaptic loss, decreased dendritic span, decreased size and density of neurons in the nucleus basalis of Meynert, and lower cortical acetylcholine levels (Cummings et al., 1998b). These findings, as well as extrapolations from the prevalence and incidence a curves for Alzheimer's disease, have led some to suggest that most individuals would eventually develop Alzheimer's disease if the human life span was extended (for example, to age 120). Protective Factors Several protective factors that delay the onset of Alzheimer's disease have been identified. Genetic endowment with the ApoE-e2 allele decreases the risk for Alzheimer's disease (Duara et al., 1996); although the mechanism of action is not yet fully understood. Higher educational level also is related to delayed onset of Alzheimer's disease (Stem et al., 1994; Callahan et al., 1996a). The use of certain medications, such as nonsteroidal anti-inflammatory drugs (Andersen et al., 1995; McGeer et al., 1996) and estrogen replacement therapy (Paganini-Hill & Henderson, 1994), may delay onset of the disorder. Vitamin E and the drug selegiline (also known as deprenyl) appear to delay the occurrence of important milestones in the course of Alzheimer's disease, including nursing home placement, severe functional impairments even as the disease progresses, and death (Sano et al.. 1997). The mechanism of action of these protective agents is not fully understood but is thought to counter the deleterious action of oxidative stress (via antioxidants such as vitamin E or estrogen) (Behl et al., 1995) or the action of inflammatory mediators associated with Older Adults and Mental Health plaque formation (via anti-inflammatories) (Mrak et al.. 1995). Histopathology The pathophysiology of Alzheimer's disease appears to be linked to the histopathologic changes in Alzheimer's disease, which include neuritic plaques, neurofibrillary tangles, synaptic loss, hippocampal granulovacuolar degeneration, and amyloid angiopathy. Most of the genetic and epigenetic risk factors have been related in some way to P-amyloid. Thus, the generation of P-amyloid peptide is increasingly regarded as the central pathological event in Alzheimer's disease (Cummings et al., 1998b; Hardy & Higgins, 1992). Effective intervention for Alzheimer's disease may involve interfering with the multiple steps within the putative Alzheimer's disease pathogenetic cascade. Targets of intervention include reducing P-amyloid generation from the amyloid precursor protein, decreasing P-amyloid aggregation and formation of beta-pleated sheets, and interfering with amyloid-related neurotoxicity. In addition, therapies could involve interruption of neuronal cell death, inhibition of the inflammatory response occurring in neuritic plaques, use of growth factors and hormonal therapies, and replenishment of deficient neurotrans- mitters. Because complete blockade of steps within the P-amyloid cascade may interfere with normal cerebral metabolic processes, efficacious interventions could involve partial interruptions (Cummings & Jeste, 1999). Researchers in the molecular neuroscience of Alzheimer's disease are exploring a number of important aspects of pathophysiology and etiology. As understanding of mechanisms of cell death and neuronal degeneration increases, new opportunities for the development of therapeutics are expected to emerge (National Institute on Aging, 1996). Role of Acetylcholine Loss of the neurotransmitter acetylcholine also is thought to play an instrumental role in the pathogenesis of Alzheimer's disease. Postmortem studies of Alzheimer's disease consistently have demonstrated the 361 Mental Health: A Report of the Surgeon General loss of basal forebrain and cortical cholinergic neurons and the depletion of choline acetyltransferase, the enzyme responsible for acetylcholine synthesis (Mesulam, 1996). The degree of this central cholinergic deficit is correlated with the severity of dementia, which has led to the "cholinergic hypothesis" of cognitive deficits in Alzheimer's disease. This hypothesis has led, in iurn, to promising clinical interventions discussed below. It should be emphasized, however, that acetylcholine is not necessarily the only neurotransmitter involved in Alzheimer's disease; research has not ruled out the contributions of other substances in pathogenesis of the disease. Pharmacological Treatment of Alzheimer's Disease Pharmacological treatment of Alzheimer's disease is a promising new focus for interventions. A delay in onset of Alzheimer's disease for 5 years might reduce the prevalence of Alzheimer's disease by as much as one-half (Breitner, 1991). In other words, to influence the prevalence of Alzheimer's disease, it may be necessary only to delay the onset of the disease to the point where mortality from other sources supersedes the incidence of Alzheimer's disease. Thus, a central goal in Alzheimer's disease treatment research is the identification of agents that prevent the occurrence, defer the onset, slow the progression, or improve the symptoms of Alzheimer's disease. Progress has been made in this research arena, with several agents showing beneficial effects in Alzheimer's disease. Acetylcholines terase inhibitors Recent attempts to treat Alzheimer's disease have focused on enhancing acetylcholine function, using either cholinergic receptor agonists (e.g., nicotine) or, most commonly, using acetylcholinesterase (AChE) inhibitors (e.g., physostigmine, velnacrine, tacrine, donepezil, or metrifonate) to increase the availability of acelylcholine in the synaptic cleft. Such treatments have generally been beneficial in ameliorating global cognitive dysfunction and, more specifically, are most effective in improving attention (Norberg, 1996; Lawrence & Sahakian, 1998). Amelioration of learning and memory impairments, the most prominent cognitive deficits in Alzheimer's disease, have been found less consistently (Lawrence & Sahakian, 1998), although some studies have shown improvements (Thal, 1996). It has been argued that failure of AChE inhibitors and nicotine to improve learning and memory may be due to high levels of neurodegeneration in the medial temporal lobe (Lawrence & Sahakian, 1998). Neuronal degeneration in this region of the brain leaves neurons impervious to the benefits of some types of replacement therapy. Detailed. neuropsychological studies of the effects of the newer cognitive enhancers, donepezil and metrifonate (an experimental drug), have not yet been published, but global cognitive functioning appears to be improved with both compounds (Cummings et al., 1998a; Rogers et al., 1998). Treatment with these AChE inhibitors also appears to benefit noncognitive symptoms in Alzheimer's disease, such as delusions (Raskind et al., 1997) and behavioral symptoms (Kaufer et al., 1996; Morris et al., 1998). Treatment of Behavioral Symptoms The behavioral symptoms of Alzheimer's disease have received less therapeutic attention than cognitive symptoms. Few double-blind, placebo-controlled studies of medications for behavioral symptoms of Alzheimer's disease have been performed. For the most part, behavioral symptoms have been treated with medications developed for primary psychiatric symptoms. The emergence of new antipsychotic and antidepressant medications requires that these agents be studied specifically for Alzheimer's disease. The observation that cholinergic agents used to enhance cognition in Alzheimer's disease may have beneficial behavioral effects also needs further exploration (Kaufer et al., 1996; Bodick et al., 1997; Raskind et al., 1997). One area that has been studied is the treatment of depression in Alzheimer's disease. Treatment with the antidepressants paroxetine and imipramine has been shown to be effective in depressed Alzheimer's disease patients (Reifler et al., 1989; Katona et al., 1998). Treatment may not only be effective for relieving 362 depressive symptoms but also for its potential to improve functional ability (Pearson et al., 1989; Ritchie et al., 1998). Several challenges are encountered with the pharmacological treatment of Alzheimer's disease. First, because of the cognitive deficits that are the hallmarkof dementia, caregiver assistance is crucial for compliance with pharmacotherapy regimens. Second. although the current pharmacotherapies are likely to be most useful if administered early in the course of the disorder, early detection of Alzheimer's disease is encumbered by the lack of a verified biological or biobehavioral marker. Third, little is currently known about the optimal duration of treatment with pharmaco- therapies. * Psychosocial Treatment of Alzheimer's Disease Patients and Caregivers Psychosocial interventions are extremely important in Alzheimer's disease. Although there has been some research on preserving cognition, most research has focused on treating patients' behavioral symptoms and relieving caregiver burden. Support for caregivers is crucial because caregivers of older patients are at risk for depression, anxiety, and somatic problems (Light & Lebowitz, 1991). Psychosocial interventions targeted either at patients or family caregivers can improve outcomes for patients and caregivers alike. Psychosocial techniques developed for use in patients with cognitive impairment may be helpful in Alzheimer's disease. Strengthening ways to deal with cognitive losses may reduce functional limitations for patients with the early stages of Alzheimer's disease, before multiple brain systems become compromised. For example, training in the use of memory aids, such as mnemonics, computerized recall devices, or copious use of notetaking, may assist patients with mild dementia. While initial research on the use of cognitive rehabilitation in dementia is promising, further studies are needed (Pliskin et al., 1996). Of the behavioral symptoms experienced by patients with Alzheimer's disease. depression and anxiety occur most frequently during the early stages of dementing disorders, whereas psychotic symptoms and Older Adults and Mental Health aggressive behavior occur during later stages (Alexopoulos & Abrams, 1991; Devanand et al., 1997). Early evidence suggested that cognitive and behavioral therapies are beneficial in treating depressed older patients with dementia (Teri & Gallagher-Thompson. 1991; Teri & Uomoto, 1991). Cognitive therapy, seen as more promising for the early stages of dementia. strives to help patients cope with depression by reducing cognitive distortions and by fostering more adaptive perceptions. Behavioral therapy, seen as more promising for more moderately or severely affected adults with dementia, targets family caregivers directly-and patients indirectly-by helping care- givers identify, plan, and increase pleasant activities for the patient, such as taking a walk, designed to improve their mood (Teri & Gallagher-Thompson, 199 1). Further affirmation for behavioral therapy for depression of patients with Alzheimer's disease recently was provided by a controlled clinical trial. The trial compared two types of behavioral therapy with a typical care condition and a waiting list control. One of the behavioral therapies targeted family caregivers to help them increase pleasant events for the patients, while the other gave caregivers more latitude in choosing which behavioral problem-solving strategies to deal with patients' depression. Both behavioral therapies led to significant improvement in patients' depressive symptoms. Moreover, the caregivers also showed significant improvement in their own depressive symptoms (Teri et al., 1997). For alleviating caregiver and family distress, a broad array of psychosocial interventions was assessed in a meta-analysis of 18 studies (Knight et al., 1993). The interventions included psychoeducation, support, cognitive-behavioral techniques. self-help, and respite care. Individual and respite programs were found moderately effective at reducing caregiver burden and dysphoria, but group interventions were only marginally effective. Subsequent research buttressed the utility of adult day care in reducing caregivers' stress and depression and in enhancing their well-being (Zarit et al., 1998). Beyond direct benefits to caregivers, support interventions also have benefited patients and have saved resources. For example, a 363 Mental Health: A Report of the Surgeon General psychosocial intervention-individual and family counseling plus support group participation-aimed at caregiving spouses was shown to delay institutionaliza- tion of patients with dementia by almost a year in a randomized trial (Mittelman et al., 1993, 1996). Targeted behavioral techniques also improved the quality of caregivers' sleep (McCurry et al., 1996), whereas psychoeducation and family support appeared to promote better patient management (Zarit et al., 1985). The virtues of psychosocial interventions also extend to patients with Alzheimer's disease in nursing homes. Until the late 1980s nursing homes employed restraints and sedatives and other medications to control behavioral symptoms in patients with dementia. But the untoward consequences, in terms of injuries from physical restraints * and increased patient disorientation, led to nursing home reform practices required by the Federal Nursing Home Reform Act of the Omnibus Budget Reconciliation Act of 1987 (Cohen & Cairl, 1996). In the past few years, a range of behavioral interventions for nursing home staff has been shown to be effective in improving behavioral symptoms of Alzheimer's disease, such as incontinence (Burgio et al., 1990; Schnelle et al., 1995), dressing problems (Beck et al., 1997), and verbal agitation (Burgio et al., 1996; Cohen-Mansfield & Werner, 1997). A major problem is that interventions are not maintained or implemented correctly by nursing home staff (Schnelle et al., 1998). New approaches seek to teach and maintain behavior management skills of nursing home assistants through a formal staff management system (Barinaga, 1998; Stevens et al., 1998). Other Mental Disorders in Older Adults Anxiety Disorders Prevalence of Anxiety Anxiety symptoms and syndromes are important but understudied conditions in older adults. Overall, community-based prevalence estimates indicate that about 11.4 percent of adults aged 55 years and older meet criteria for an anxiety disorder in 1 year (Flint, 1994; Table 5-l). Phobic anxiety disorders are among the most common mental disturbances in late life according to the ECA study (Table 5-l). Prevalence studies of panic disorder (0.5 percent) and obsessive-compulsive disorder ( 1.5 percent) in older samples reveal low rates (Table 5-l) (Copeland et al., 1987a; Copeland et al., 1987b; Bland et al., 1988; Lindesay et al., 1989). Although the National Comorbidity Survey did not cover this age range, and the ECA did not include this disorder, other studies showed a prevalence of generalized anxiety disorder in older adults ranging from 1.1 percent to 17.3 percent higher than that reported for panic disorder or obsessive-compulsive disorder (Copeland et al., 1987a; Skoog, 1993). Worry or "nervous tension," rather than specific anxiety syndromes may be more important in older people. Anxiety symptoms that do not fulfill the criteria for specific syndromes are reported in up to 17 percent of older men and 21 percent of older women (Himmelfarb & Murrell, 1984). In addition, some disorders that have received less study in older adults may become more important in the near future. For example, post-traumatic stress disorder (PTSD) is expected to assume increasing importance as Vietnam veterans age. At 19 years after combat exposure, this cohort of veterans has been found to have a PTSD prevalence of 15 percent (cited in McFarlane & Yehuda, 1996). As affected patients age, there is a continuing need for services. In addition, research has shown that PTSD can manifest for the first time long after the traumatic event (Aarts & Op den Velde, 1996), raising the specter that even more patients will be identified in the future. Treatment of Anxiety The effectiveness of benzodiazepines in reducing acute anxiety has been demonstrated in younger and older patients, and no differences in the effectiveness have been documented among the various benzodiazepines. Some research suggests that benzodiazepines are marginally effective at best in treating chronic anxiety in older patients (Smith et al., 1995). 364 The half-life of certain benzodiazepines and their metabolites may be significantly extended in older patients (particularly for the compounds with long half-life). If taken over extended periods, even short-acting benzodiazepines tend to accumulate in older individuals. Thus, it is generally recommended that any use of benzodiazepines be limited to discrete periods (less than 6 months) and that long-acting compounds be avoided in this population. On the other hand, use of short-acting compounds may predispose older patients to withdrawal symptoms (Salzman, 1991). Side effects of benzodiazepines may include drowsiness, fatigue, psychomotor impairment, memory or other cognitive impairment, confusion, paradoxical reactions, depression, res$ratory problems, abuse or dependence problems, and withdrawal reactions. Benzodiazepine toxicity in older patients includes sedation, cerebellar impairment (manifested by ataxia, dysarthria, incoordination, or unsteadiness), cognitive impairment, and psychomotor impairment (Salzman, 199 1). Psychomotor impairment from benzodiazepines can have severe consequences, leading to impaired driver skills and motor vehicle crashes (Bat-bone et al., 1998) and falls (Caramel et al., 1998). . Buspirone is an anxiolytic (antianxiety) agent that is chemically and pharmacologically distinct from benzodiazepines. Controlled studies with younger patients suggest that the efficacy of buspirone is comparable to that of the benzodiazepines. It also has proven effective in studies of older patients (Napoliello, 1986; Robinson et al., 1988; Bohm et al., 1990). On the other hand, buspirone may require up to 4 weeks to take effect, so initial augmentation with another antianxiety medication may be necessary for some acutely anxious patients (Sheikh, 1994). Significant adverse reactions to buspirone are found in 20 to 30 percent of anxious older patients (Napoliello, 1986; Robinson et al., 1988). The most frequent side effects include gastrointestinal symptoms, dizziness, headache, sleep disturbance, nausea/vomiting, uneasiness, fatigue, and diarrhea. Still, buspirone may be less sedating than benzodiazepines (Salzman, 1991; Seidel et al., 1995). Older Adults and Mental Health Although the efficacy of antidepressants for the treatment of anxiety disorders in late life has not been studied, current patterns of practice are informed by the efficacy literature in adults in midlife (see Chapter 4). Schizophrenia in Late Life Although schizophrenia is commonly thought of as an illness of young adulthood, it can both extend into and first appear in later life. Diagnostic criteria for schizophrenia are the same across the life span, and DSM-IV places no restrictions on age of onset for a diagnosis to be made. Symptoms include delusions, hallucinations, disorganized speech, disorganized or catatonic behavior (the so-called "positive" symptoms), as well as affective flattening, alogia, or avolition' (the so-called "negative" symptoms). Symptoms must cause significant social or occupational dysfunction, must not be accompanied by prominent mood symptoms, and must not be uniquely associated with substance use. Prevalence and Cost One-year prevalence of schizophrenia among those 65 years or older is reportedly only around 0.6 percent, about one-half the 1 -year prevalence of the 1.3 percent that is estimated for the population aged 18 to 54 (Tables 5-l and 4-l). The economic burden of late-life schizophrenia is high. A study using records from a large California county found the mean cost of mental health service for schizophrenia to be significantly higher than that for other mental disorders (Cuffel et al., 1996); the mean expenditure among the oldest patients with schizophrenia (> 74 years old) was comparable to that among the youngest patients (age 18 to 29). While long-term studies have shown that use of nursing homes, state hospitals, and general hospital care by patients with all mental disorder diagnoses has declined in recent decades, the rate of decline is lower for older patients with schizophrenia (Kramer et al., 1973; Redick et al., 1977). The high cost of these settings ' Alogia refers to poverty of speech, and avolition refers to lack of goal-directed behavior. 365 Mental Health: A Report of the Surgeon General contributes to the greater economic burden associated with late-life schizophrenia. Late-Onset Schizophrenia Studies have compared patients with late onset (age at onset 45 years or older) and similarly aged patients with earlier onset of schizophrenia (Jeste et al., 1997); both were very similar in terms of genetic risk, clinical presentation, treatment response. and course. Among key differences between the groups. patients with late-onset schizophrenia were more likely to be women in whom paranoia was a predominant feature of the illness. Patients with late-onset schizophrenia had less impairment in the specific neurocognitive areas of learning and abstraction/ cognitive flexibility and required lower doses of neuroleptic medications for management of their psychotic symptoms. These and other differences between patients with early- and late-onset illness suggest that there might be neurobiologic differences mediating the onset of symptoms (DeLisi, 1992; Jeste et al., in press). Course and Recovery The original conception of "dementia praecoxl" the early term for schizophrenia, emphasized progressive decline (Kraepelin, 197 1); however, it now appears that Kraepelin's picture captures the outcome for a small percentage of patients, while one-half to two-thirds significantly improve or recover with treatment and psychosocial rehabilitation (Chapter 4). Although the rates of full remission remain unclear, some patients with schizophrenia demonstrate remarkable recovery after many years of chronic dysfunction (Nasar, 1998). Research suggests that a factor in better long-term outcome is early intervention with antipsychotic medications during a patient's first psychotic episode (See Chapter 4). A recent cross-sectional study that compared middle-aged with older patients, all of whom lived in community settings, found some similarities and differences (Eyler-Zonilla et al., 1999). The older patients experienced less severe symptoms overall and were on lower daily doses of neuroleptics than middle- aged patients who were similar in demographic, clinical, functional, and broad cognitive measures. In addition, positive symptoms were less prominent (or equivalent) in the older group, depending on the measure used. Negative symptoms were more prominent (or equivalent) in the older group, and older patients scored more poorly on severity of dyskinesia. Older patients were impaired relative to middle-aged ones on two measures of global cognitive function. This finding, however, appeared to reflect a normal degree of decline from an impaired baseline, as the degree of change in cognitive function with age in the patient group was equivalent to that seen in the comparison group. A recent study used the Direct Assessment of Functional Status scale (DAFS) (Loewenstein et al., 1989) to compare the everyday living skills of middle-aged and older adults with schizophrenia with those of people without schizophrenia of similar ages (Klapow et al., 1997). The patients exhibited significantly more functional limitations than the controls did across most DAFS subscales. In another recent study that used a measure of overall disease impact, the Quality of Well-Being Scale, older outpatients with schizophrenia manifested significantly lower quality of well-being than did comparison subjects, and their scores were slightly worse than those of ambulatory AIDS patients (Patterson et al.. 1996). Thus. while schizophrenia may be less universally deteriorating than previously has been assumed, older patients with the disorder continue nonetheless to exhibit functional deficits that warrant research and clinical attention. Etiology of Late-Onset Schizophrenia Recent studies support a neurodevelopmental view of late-onset schizophrenia (Jeste et al., 1997). Equivalent degrees of childhood maladjustment have been found in patients with late-onset schizophrenia and early- onset schizophrenia, for example, suggesting that some liability for the disorder exists early in life. Equivalent degrees of minor physical anomalies in patients with late-onset schizophrenia and early-onset schizophrenia 366 Older Adults and Mental Health suggest the presence of developmental defects in both groups (Lohr et al., 1997). The presence of a genetic contribution to late-onset and early-onset schizophrenia is evident in increased rates of schizophrenia among first-degree relatives (Rokhlina, 1975; Castle & Howard, 1992; Castle et al., 1997). If late-onset schizophrenia is neurodevelopmental in origin, an explanation for the delayed onset may be that late-onset schizophrenia is a less severe form of the disorder and, as such, is less likely to manifest early in life. Recent research suggests that in several arenas- for example. neuropsychological impairments in learning, retrieval, abstraction, and semantic memory as well as electroencephalogram abnormalities-the deficits of patients with late-onset schizophrenia are less severe (Heaton et al, 1994; Jeste et al., 1995b; Olichneyet al., 1995, 1996; Paulsen et al., 1995, 1996). Also, negative symptoms are less pronounced and neuroleptic doses are lower in patients with late-onset schizophrenia (Jeste et al., 1995b). The etiology and onset of schizophrenia in younger adults often are explained by a diathesis-stress model in which there is a genetic vulnerability in combination with an environmental insult (such as obstetric complications), with onset triggered by maturational changes or life events that stress a developmentally damaged brain (Feinberg, 1983; Weinberger, 1987; Wyatt. 1996). Under this multiple insult model, patients with late- onset schizophrenia may have had fewer insults and thus have a delayed onset. An alternative or complementary explanation for the delayed onset in late-onset schizophrenia is the possibility that these patients possess protective features that cushion the blow of any additional insults. The preponderance of women among patients with late-onset schizophrenia has fueled hypotheses that estrogen plays a protective role. The view of late-onset schizophrenia as a less severe form of schizophrenia. in which the delayed onset results from fewer detrimental insults or the presence of protective factors, suggests a continuous relationship between age at onset and severity of liability. An alternative view is that late-onset schizophrenia is a distinct neurobiological subtype of schizophrenia. The preponderance of women and of paranoid subtype patients seen in late-onset schizophrenia supports this view. These two etiologic theories of late-onset schizophrenia call for further research. Treatment of Schizophrenia in Late Life Pharmacological treatment of schizophrenia in late life presents some unique challenges. Conventional neuroleptic agents, such as haloperidol. have proven effective in managing the "positive symptoms" (such as delusions and hallucinations) of many older patients, but these medications have a high risk of potentially disabling and persistent side effects, such as tardive dyskinesia (Jeste et al., in press). The cumulative annual incidence of tardive dyskinesia among older outpatients (29 percent) treated with relatively low daily doses of conventional antipsychotic medications is higher than that reported in younger adults (Jeste et al., in press). Recent years have witnessed promising advances in the management of schizophrenia. Studies with mostly younger schizophrenia patients suggest that the newer "atypical" antipsychotics, such as clozapine, risperidone, olanzapine, and quetiapine, may be effective in treating those patients previously unresponsive to traditional neuroleptics. They also are associated with a lower risk of extrapyramidal symptoms and tardive dyskinesia (Jeste et al., in press). Moreover, the newer medications may be more effective in treating negative symptoms and may even yield partial improvement in certain neurocognitive deficits associated with this disorder (Green et al.. 1997). The foremost barriers to the widespread use of atypical antipsychotic medications in older adults are (1) the lack of large-scale studies to demonstrate the effectiveness and safety of these medications in older patients with multiple medical conditions, and (2) the higher cost of these medications relative to traditional neuroleptics (Thomas & Lewis, 1998). 367 Mental Health: A Report of the Surgeon General Alcohol and Substance Use Disorders in Older Adults Older people are not immune to the problems associated with improper use of alcohol and drugs, but as a rule, misuse of alcohol and prescription medications appears to be a more common problem among older adults than abuse of illicit drugs. Still, because few studies of the, incidence and prevalence of substance abuse have focused on older adults-and because those few were beset by methodological problems-the popular perception may be misleading. A persistent research problem has been that diagnostic criteria for substance abuse were developed and validated on young and middle-aged adults. For example, DSM-IV criteria include increased tolerance to the effects of the substance, which results in increased consumption ove'r time; yet, changes in pharmacokinetics and physiology may alter drug tolerance in older adults. Decreased tolerance to alcohol among older individuals may lead to decreased consumption of alcohol with no apparent reduction in intoxication. Criteria that relate to the impact of drug use on typical tasks of young and middle adulthood, such as school and work performance or child rearing, may be largely irrelevant to older adults, who often live alone and are retired. Thus, abuse and dependence among older adults may be underestimated (Ellor & Kurz, 1982; Miller et al., 1991; King et al., 1994). Epidemiology Alcohol Abuse and Dependence The prevalence of heavy drinking (12 to 2 1 drinks per week) in older adults is estimated at 3 to 9 percent (Liberto et al., 1992). One-month prevalence estimates of alcohol abuse and dependence in this group are much lower, ranging from 0.9 percent (Regier et al., 1988) to 2.2 percent (Bailey et al., 1965). Alcohol abuse and dependence are approximately four times more common among men than women (1.2 percent vs. 0.3 percent) ages 65 and older (Grant et al., 1994). Although lifetime prevalence rates for alcoholism are higher for white men and women between ages 18 and 29, African American men and women have higher rates among those 65 years and older. For Hispanics, men had rates between those of whites and African Americans. Hispanic females had a much lower rate than that for whites and African Americans (Helzer et al., 1991). Longitudinal studies suggest variousiy that alcohol consumption decreases with age (Temple & Leino, 1989; Adams et al., 1990), remains stable (Ekerdt et al., 1989) or increases (Gordon & Kannel, 1983), but it is anticipated that alcohol abuse or dependence will increase as the baby boomers age, since that cohort has a greater history of alcohol consumption than current cohorts of older adults (Reid & Anderson, 1997). Misuse of Prescription and Over-the-Counter Medications Older persons use prescription drugs approximately three times as frequently as the general population (Special Committee on Aging, 1987), and the use of over-the-counter medications by this group is even more extensive (Kofoed, 1984). Annual estimated expenditures on prescription drugs by older adults in the United States are $15 billion annually, a fourfold greater per capita expenditure on medications compared with that of younger individuals (Anderson et al., 1993; Jeste & Palmer, 1998). Not surprisingly, substance abuse problems in older adults frequently may result from the misuse-that is, underuse, overuse, or erratic use-of such medications; such patterns of use may be due partly to difficulties older individuals have with following and reading prescriptions (Devor et al., 1994). In its extreme form, such misuse of drugs may become drug abuse (Ellor & Kurz, 1982; DSM-IV). Research studies that have relied on medical records review show consistently that alcohol abuse and dependence are significantly more common than other forms of substance abuse and dependence (Finlayson & Davis, 1994; Moos et al., 1994). Yet prescription drug dependence is not uncommon and, as Finlayson and Davis (1994) found, the greatest risk factor for abuse of prescription medication was being female. This finding is supported by other studies showing that older women are more likely than men to 368 visit physicians and to be prescribed psychoactive drugs (Cafferata et al., 1983; Baum et al., 1984; Mos- sey & Shapiro, 1985; Adams et al., 1990). In contrast, an analysis of data from the National Household Survey on Drug Abuse concluded that older men were more likely than women to report use of sedatives, tranquilizers, and stimulants (Robins & Clayton, 1989). Older adults of both sexes are at risk for analgesic abuse, which can culminate in various nephropathies (Elseviers & De Broe, 1998). Benzodiazepine use represents an area of particular concern for older adults given the frequency with which these medications are prescribed at inappropriately high doses (Shorr et al., 1990) and for excessive periods of time. A national survey of approximately 3,000 community-dwelling persons found that older persons were overrepresented among the 1.6 percent who had taken benzodiazepines daily for 1 year or longer (7 1 percent > 50 years; 33 percent > 65 years of age) (Mellinger et al., 1984). Benzodiazepine users were more likely to be older, white, female, less educated, separated/divorced, to have experienced increased stressful life events, and to have a psychiatric diagnosis (Swartz et al., 1991). Illicit Drug Abuse and Dependence In contrast to alcohol and licit medications, older adults infrequently use illicit drugs. Less than 0.1 percent of older individuals in the Epidemiologic Catchment Area study met DSM-III (American Psychiatric Association, 1980) criteria for drug abuse/dependence during the previous month (Regier et al., 1988). This compared with a l-month prevalence rate of 3.5 percent among 18-to 24-year-olds. ECA data further suggest a lifetime prevalence of illegal drug use of 1.6 percent for persons older than 65 years (Anthony & Helzer, 1991). The development of addiction to illict drugs after young adulthood is rare, while mortality is high (Atkinson et al., 1992). For example, over 27 percent of heroin addicts died during a 24-year period (Hser et al., 1993), and 5.6 percent of deaths associated with heroin or morphine use were among persons older than 55 (National Institute on Drug Abuse, 1992). Older Adults and Mental Health As is projected to occur with trends in alcohol consumption, the low prevalence of older adults' drug use and abuse in the late 1990s may change as the baby boomers age. Annual "snapshot" data extrapolated from the National Household Survey on Drug Abuse. which has been conducted since 197 1, afford a glimpse of trends. Patterson and Jeste ( 1999) recently compared prevalence estimates of those born during the baby boom with an older (> 35 years) non-baby-boomer cohort. The difference between baby boomers and the previous cohort translated in 1996 into an excess of approximately 1.1 million individuals using drugs. Their excess drug use, combined with their sheer numbers, means that more drug use is expected as this cohort ages, placing greater pressures on treatment programs and other resources. Projections also suggest that the costs of alcohol and substance abuse are likely to rise in the near future. Across age ranges, drug abuse and alcohol abuse have been estimated to cost over $109.8 billion and $166.5 billion, respectively (Harwood et al., 1998). Although no studies have estimated the annual costs of alcohol and substance abuse among older adults, there is evidence that the presence of drug abuse and dependence greatly increases health care expenditures among individuals with comorbid medical disorders. For example, in a study of over 3 million Medicare patients who were hospitalized and discharged with a diagnosis of cardiovascular disease, average annual hospital charges were $17,979 for older patients with a concomitant diagnosis of drug dependence and $14,253 for those with a concomitant diagnosis of drug abuse. compared with only $11,387 for older patients with no concomitant drug disorder (Ingster & Cartwright. 1995). In addition, increased expenditures due to the presence of a drug disorder were greatest among older patients who also had a mental disorder. Course A longstanding assumption holds that substance abuse declines as people age. Winick (1962) proposed one of the most popular theories to explain apparent decreases in substance abuse, particularly narcotics, with aging. His "maturing out" theory posits that 369 Mental Health: A Report of the Surgeon General factors associated with aging processes and length of abuse contribute to a decline in the number of older narcotic addicts. These factors include changes in developmental stages and morbidity and mortality associated with use of substances. Consistent with these hypotheses. substance abusers have higher mortality rates compared with age-matched nonabusers (Finney & Moos, 1991; Moos et al., 1994). However, some research contradicts the "maturing out" theory. For example, some studies show that persons who have been addicted for more than 5 years do not become abstinent as they age (Haastrup & Jepsen, 1988; Hser et al.. 1993). Also, addicts approaching 50 years of age who were followed for more than 20 years remained involved in criminal activitiegHser et al., 1993). These findings emphasize the need to focus more attention on substance abuse in late life, especially in light of demographic trends. Treatment of Substance Abuse and Dependence The treatment of substance abuse and dependence in older adults is similar to that for other adults. Treatment involves a combination of pharmacological and psychosocial interventions, supplemented by family support and participation in self-help groups (Blazer, 1996a). Pharmacotherapy for substance abuse and dependence in older adults has been targeted mostly at the acute management of withdrawal. When there is significant physical dependence. withdrawal from alcohol can become a life-threatening medical emergency in older adults. The detoxification of older adult patients ideally should be done in the inpatient setting because of the potential medical complications and because withdrawal symptoms in older adults can be prolonged. Benzodiazepines are often used for treatment of withdrawal symptoms. In older adults, the doses required to treat the signs and symptoms of withdrawal are usually one-half to one-third of those required for a younger adult. Short- or intermediate- acting forms usually are preferred. Pharmacological agents for treatment of substance dependence rarely have been studied in older adults. Disulfiram use in older adults to promote abstinence is not recommended because of the potential for serious cardiovascular complications. Compounds recently proposed for use in treatment of addiction, such as flagyl, deserve further study. A rare controlled clinical trial of substance abuse treatment in older patients recently revealed naltrexone to be effective at preventing relapse with alcohol dependence (Oslin et al., 1997). Service Delivery Overview of Services New perspectives are evolving on the nature of mental health services for older adults and the settings in which they are delivered. Far greater emphasis is being placed on community-based care, which entails care provided in homes, in outpatient settings, and through community organizations. The emphasis on community-based care has been triggered by a convergence of demographic, consumer, and public policy imperatives. In terms of demographics. approximately 95 percent of older persons at a given point in time live in the community rather than in institutions, such as nursing homes (U.S. Department of Health and Human Services, Administration on Aging, and American Association of Retired Persons [U.S.DHHS, AoA & AARP], 1995). Of those living in the community, approximately 30 percent, mostly women, live alone (U.S. DHHS, AoA & AARP, 1995). Most older persons prefer to remain in the community and to maintain their independence. Yet living alone makes them even more reliant on community-based services if they have a mental disorder. Service delivery also is being shaped by public policy and the emergence of managed care. The escalating costs of institutional care, combined with the recognition of past abuses. stimulated policies to limit nursing home admissions and to shift treatment to the community (Maddox et al., 1996). Mental disorders are leading risk factors for institutionalization (Katz & Parmelee, 1997). Therefore, to keep older people in the community, where they prefer to be, more energies are being marshaled to promote mental health and to prevent or treat mental disorders in the community. In 370 other words, treating mental disorders is seen as a means to stave off costly institutionalization-resulting either from a mental disorder or a comorbid somatic disorder. An untreated mental disorder, for example, can turn a minor medical problem into a life- threatening and costly condition. Problems with forgetting to take medication (e.g., with dementia), developing delusions about medication (e.g., with schizophrenia), or lowering motivation to refill prescriptions (e.g., with depression) can increase the likelihood of having more severe illnesses that demand more intensive and expensive institutional care. Therefore, promotion of mental health and treatment of mental disorders are crucial elements of service delivery. The delivery of community-based mental health services for older adults faces an enormous challenge. Services for older adults are insufficient and fragmented, often divided between systems of health, mental health, and social services (Gatz & Smyer, 1992; Cohen & Cairl, 1996). Under these three systems, services include medical and psychosocial care, rehabilitation, recreation, housing, education, and other supports. Yet although every community has an Administration on Aging to assist with services for older adults generally, there is no administrative body responsible for integrating the daunting array of services needed specifically for individuals with severe mental illnesses. Similar problems are encountered with coordinating services for children, as discussed in Chapter 3. Local mental health authorities and systems of care have been effective in coordinating care for some groups of adults, but no special administrative mental health entities exist for older adults. The fragmentation of service systems for older people in the United States stands in contrast to the United Kingdom and Ireland, where governmental authorities coordinate their care (Reifler, 1997). Older adults eventually may benefit from the local mental health authorities developing in the United States, but thus far these authorities have been focused on services for other adults. Because of ethnic diversity in the United States, systems of care must also deal with the special needs of Older Adults and Mental Health older Americans who have limited English proficiency and different cultural backgrounds. The following section describes the nature and settings in which older people receive mental health services. It concentrates on primary care, adult day centers and other community care settings, and nursing homes. A recurrent theme across these settings is the failure to address mental health needs of older people. Selected issues in financing of services for older adults are discussed briefly at the end of this section, but most of the issues related to financing policy (e.g., Medicare, Medicaid) and managed care are discussed in Chapter 6. Service Settings and the New Landscape for Aging Demographic, consumer, and public policy imperatives have propelled tremendous growth in the diversity of settings in which older persons simultaneously reside and receive care (Table 5-2). Care is no longer the strict province of home or nursing home. The diversity of home settings in suburban and urban communities extends from naturally occurring retirement communities to continuing care retirement communities to newer types of alternative living arrangements. These settings include congregate or senior housing, senior hotels, foster care, group homes, day centers (where people reside during the day), and others. The diversity of institutional settings includes nursing homes, general hospitals (with and without psychiatric units), psychiatric hospitals, and state mental hospitals. among others. In fact, the range of settings, and the nature of the services provided within each, has blurred the distinction between home and nursing home (Kane, 1995). Across the range of settings, the duration of care can be short term or long term, depending on patients' needs. The phrase, "long-term care," has come to refer to a range of services for people with chronic or degenerative illness or disabilities who require support over a prolonged period of time. In the past, long-term care was synonymous with nursing home care or other forms of institutional care, but the term has come to 371 Mental Health: A Report of the Surgeon General Table 5-2. Settings for mental health services for older adults' I Communities Homes Group homes Retirement communities Primary care and general medical sector Institutions Nursing homes General hospitals with psychiatric units General hospitals without psychiatric units State mental hospitals Outpatient therapy I / Veterans Affairs hospitals Community mental health centers -1 *Two other settings (not included in this table) are board and care homes and assisted living facilities. These are residential facilities that serve as a bridge between community and institutional settings and have elements of each. apply to a full complement of institutional or community-based settings. Within the continuum of services,' one new perspective-conceived as the landscape for aging- strives to tailor the environment to the needs of the person through a combined focus on health and residential requirements (Cohen, 1994). Whether at home, in a retirement community, or in a nursing home. this health and home perspective is deemed to be crucial to achieving high quality of life for older adults. Over the past 30 years, improvements in the health side of this perspective have occurred, but the home part has lagged. The challenge is to stimulate an interdisciplinary collaboration between systems of care and consumers. One important area for an interdisciplinary approach is the extent to which a given setting fosters independent functioning versus dependent functioning, an issue influencing mental health and quality of life. Though certainly not a goal, some settings inadvertently foster dependency rather than independence. Nursing homes and hospitals, for example, are understandably more focused on what individuals cannot do, as opposed to what they can do. Yet their major focus on incapacity (the nursing and health focus) runs the risk of overshadowing function and independence (the home and humanities focus). In other settings, the balance between dependence and independence shifts in the other direction, with the risk of nursing and health needs being inadequately addressed. In recent years, the emphasis has been on "aging in place, " either at home or in the community, rather than in alternate settin&. The landscape for aging is a construct within which to examine the depth and breadth of human experience in later life (Cohen, 1998b). A health and humanities focus across this landscape offers a design for dealing with mental health problems as well as with health promotion to harness human potential. The landscape for aging, with its health and humanities orientation, is a construct designed to stir new thinking in research, practice, and policy. It also defines a clear need for new mental health services' development and delivery, training, research, and policies to address the range of sites, each with its own unique characteristics and growing populations. The service systems, however, have yet to embrace a broader view. Primary Care Primary care6 represents a pivotal setting for the identification and treatment of mental disorders in older people. Many older people prefer to receive mental health treatment in primary care (Unutzer et al., 1997a), a preference bolstered by public financing policies that encourage their increasing reliance on primary, rather than specialty, mental health care (Mechanic, 1998). Primary care offers the potential advantages of proximity, affordability, convenience, and coordination of care for mental and somatic disorders, given that comorbidity is typical. ' Primary care includes services provided by general practitioners, family physicians, general internists, certain specialists designated as primary care physicians (such as pediatricians and obstetrician- gynecologists), nurse practitioners, physician assistants, and other health care professionals. General medical settings include all primary care settings plus all non-mental health specialty care. 372 The potential advantages of primary care, however, have yet to be realized. Diagnosis and treatment of older people's mental disorders in the primary care setting are inadequate. The efficacious treatments described in the depression section of this chapter are not being practiced, particularly not in primary care and other general medical settings. As documented earlier, a significant percentage of older patients with depression are underdiagnosed and undertreated. The concern about inadequate treatment of late-life depression in primary care is magnified by growing enrollment in managed care. Primary care is generally not well equipped to treat chronic mental disorders such as depression or dementia. It has limited capacity to identify patients with common mental disorders and to provide the proactive followup that is required to retain patients in treatment. To ensure better treatment of late-life depression in primary care, there is heightening awareness of the need for new models for mental health service delivery (Unutzeret al., 1997a). New models of service delivery in primary care include mental health teams, consultation-liaison models,' and integration of mental health professionals into primary care (Katon & Gonzales, 1994; Schulberg et al., 1995; Katon et al., 1996. 1997; Stolee et al., 1996; Gasket al.,`1997). For example, the intervention developed by Katon and colleagues introduced a structured depression treatment program into the primary care setting. The program included behavioral treatment to inculcate more adaptive coping strategies and counseling to enhance compliance with antidepressant medications. Patients were randomized in a controlled trial comparing this structured depression program with usual care by primary care physicians. The investigators found patients participating in the program to have displayed better medication adherence, better satisfaction with care, and a greater decrease in severity of major depression (Katon et al., 1996). ' Consultation-liaison models provide a bridge between psychiatry and the rest of medicine. In most models, a mental health specialist is called in as a consultant at the request of a primary care provider or works as a regular member of a team of health care providers. Older Adults and Mental Health Models that integrate mental health treatment into primary care, while thus far designed largely for depression, also may have utility for other mental disorders seen in primary care. Nevertheless, primary care is not appropriate for all patients with mental disorders. Primary care providers can be guided by a set of recommendations for appropriate referrals to specialty mental health care (American Association for Geriatric Psychiatry, 1997). Adult Day Centers and Other Community Care Settings Over the past few decades, adult day centers have developed as an important service delivery approach to providing community-based long-term care. Adult day centers, although heterogeneous in orientation. provide a range of services (usually during standard "9 to 5" business hours), including assessment, social, and recreation services, for adults with chronic and serious disabilities. They represent a form of respite care designed to give caregivers a break from the responsibility of providing care and to enable them to pursue employment. Over the past 30 years, adult day centers have grown in number from fewer than 100 to over 4,000, under the sponsorship of community organizations or residential facilities. A large national demonstration program on adult day centers showed that they can care for a wide spectrum of patients with Alzheimer's disease and related dementias and can achieve financial viability (Reifler et al., 1997; Reifler et al., in press). There also is evidence that adult day centers are cost-effective in terms of delaying institutionalization, and participants show improvement in some measures of functioning and mood (Wimo et al., 1993, 1994). There are several approaches to delivering services in adult day centers. There is no research evidence that any one model of service delivery is superior to another. For example, a social model has been developed by Little Havana Activities & Nutrition Centers of Dade County (Florida). The Little Havana Senior Center provides mental health, health, social, nutritional, transportation, and recreational services, emphasizing both remedial and preventive services. 373 Mental Health: A Report of the Surgeon General The center focuses on the predominantly Cuban population of South Florida. Yet much more research is needed to demonstrate the relative effectiveness of different models of adult day services (Reifler et al., 1997). Beyond adult day centers, other innovative models of community-based long-term care strive to incorporate mental health services. Few have been evaluated and none implemented on a wide scale. These models include the social/health maintenance organization (,S/HMO) (Greenberg et al., 1988), On Lok Senior Services Program, and life care communities or continuing care retirement communities (Robinson, 1990b). These new features of the landscape of aging show promise, but there is insufficient evidence of cost-effectiveness and generalizability of these models, particularly the mental health component. Perhaps the lack of a research base and limited market account for the slow pace of their proliferation in the United States. Nursing Homes Most older adults live in the community and only a minority of them live in nursing homes; of the latter, about fwo-rhirds have some kind of mental disorder (Bums, 1991). The majority have some type of dementia, while others have disabling depression or schizophrenia (Bums, 1991). Despite the high prevalence of people with mental disorders in nursing homes, these settings generally are ill equipped to meet their needs (Lombardo, 1994). Deinstitutionalization of state mental hospitals beginning in the 1960s encouraged the expanded use of nursing homes for older adults with mental disorders. This trend was enhanced by Medicaid incentives to use nursing homes instead of mental hospitals. But the shift to nursing homes was not accompanied by alterations in care. In 1986, the Institute of Medicine issued a landmark report documenting inappropriate and inadequate care in nursing homes, including the excessive use of physical and chemical restraints (IOM, 1986). This subsequent visibility of problems prompted the passage in 1987 of the Nursing Home Reform Act (also known as the Omnibus Budget Reconciliation Act of 1987). This legislation restricted the inappropriate use of restraints and required preadmission screening for all persons suspected of having serious mental illness. The purpose of the screening was to exclude from nursing homes people with mental disorders who needed either more appropriate acute treatment in hospitals or long-term treatment in community-based settings. Preadmission screening also was designed to improve the quality of psychosocial assessments and care for nursing home residents with mental disorders. Nursing home placement is appropriate for patients with mental disorders if the disorders have produced such significant dysfunction that patients are unable to perform activities of daily living. To meet the legislation's requirements, nursing homes must have the capacity to deliver mental health care. Such capacity depends on trained mental health professionals to deliver appropriate care and treatment. Unfortunately, prior to and even after passage of the Omnibus Budget Reconciliation Act of 1987, Medicaid policies discouraged nursing homes from providing specialized mental health services, and Medicaid reimbursements for nursing home patients have been too low to provide a strong incentive for participation by highly trained mental health providers (Taube et al., 1990). The emphasis on community-based care, combined with inadequate nursing home reimbursement policies, has limited the development of innovative mental health services in nursing homes. Major barriers persist in the delivery of appropriate care to mentally ill residents of nursing homes. Services for Persons With Severe and Persistent Men tat Disorders Older adults with severe and persistent mental disorders (SPMD) are the most frequent users of long- term care either in community or institutional settings. SPMD in older adults includes lifelong and late-onset schizophrenia, delusional disorder, bipolar disorder. and recurrent major depression. It also includes Alzheimer's disease and other dementias (and related behavioral symptoms, including psychosis), severe treatment-refractory depression, or severe behavioral problems requiring intensive and prolonged psychiatric 374 intervention. Although these groups of disorders have different courses of illness and outcomes, they have many overlapping clinical features, share the cotnmon need for mental health long-term care services, and are frequently treated together in long-term care settings (Bums, 1991; Gottesman et al., 1991; American Psychiatric Association, 1993). It is estimated that 0.8 percent of persons older than 55 years in the United States have SPMD (Kessler et al., 1996). As a result of the dramatic downsizing and closure of state hospitals in past decades, 89 percent of institutionalized older persons with SPMD now live in nursing homes (Bums, 199 1). However, institutions are expected to play a substantially smaller role than community-based settings in future systems of mental health long-term care (Bart'els et al., in press). First, the majority of older adults with SPMD presently live in the community (Meeks & Murrell, 1997; Meeks et al., 1997) and prefer to remain there. Second, experience with the Preadmission Screening and Resident Review mandated by the Omnibus Budget Reconciliation Act of 1987 has been mixed. It may have slowed inappropriate admissions to nursing homes, restricted inappropriate use of restraints, and reduced overuse of psychotropic medications, but it did not .otherwise improve the quality of mental health services (Lombardo, 1994). Furthermore, states' opposition to what they perceived to be Federal government interference in local health care policy and a general trend toward deregulation subsequently curtailed Federal nursing home reform. Finally, the growing costs of nursing home care are stimulating dramatic reforms in reimbursement and policy, including state mandates to limit Medicaid expenditures by decreasing nursing home beds and Federal reform by Medicare to implement prospective payment for nursing home services (Bartels & Levine, 1998). To accommodate the mounting number of individuals who have disorders requiring chronic care, future projections suggest the greatest growth in services will be in home and community-based settings (Institute for Health and Aging, 1996), increasingly financed through capitated and managed care arrangements. Older Adults and Mental Health Older adults with SPMD are high users of services (Cuffel et al., 1996; Semke & Jensen, 1997) and require mental health long-term care that is comprehensive. integrated, and multidisciplinary (Moak, 1996; Small et al., 1997; Bartels & Colenda, 1998). The mental health care needs of this population include specialized geropsychiatric services (Moak, 1996); integrated medical care (Moak & Fisher, 1991; Small et al.. 1997); dementia care (Small et al., 1997; Bartels & Colenda, 1998); home and community-based long-term care; and residential and family support services, intensive case management, and psychosocial rehabilitation services (Aiken, 1990: Robinson, 1990a; Schaftt & Randolph, 1994; Lipsman, 1996). With adequate supports, older persons with SPMD can be maintained in the community, sometimes at lower cost. and with equal or improved quality of life in comparison with institutions (Bernstein & Hensley, 1988; Mosher-Ashley, 1989; Leff, 1993; Trieman et al., 1996). However, current mental health policies have left many older persons with SPMD with decreased access to mental health care in both community and institutional settings (Knight et al., 1998). Community- based mental health services for older people are largely provided through the general medical sector, partly due to poor responsiveness to the needs of older people by community mental health organizations (Light et al., 1986). Yet reliance on the general medical sector also has not met their needs because of its focus on acute care (George, 1992). In addition, most home health agencies provide only limited short-term mental health care. The long-term care programs that exist primarily aid older adults with chronic physical disabilities or cognitive impairment but fail to address impairments in mood and behavior (Robinson, 1990a). An additional barrier is that the majority of community-residing older adults do not seek mental health services, except for medication (Meeks & Murrell, 1997), despite continued need (Meeks et al., 1997). Those without family support generally live in nursing homes, assisted living facilities, and board and care homes. These three are forms of residential care that offer some combination of housing, supportive 375 Mental Health: A Report of the Surgeon General services, and, in some cases, medical care. In short, more resources must be devoted to programs that integrate mental health rehabilitative services into long-term care in both community and institutional settings. Financing Services for Older Adults Financing policies furnish incentives that favor utilization of some services over others (e.g., nursing homes rather than state mental hospitals) or preclude the provision of needed services (e.g., mental health services in nursing homes). Details on financing and organizing mental health services, with a special focus on access, are presented in Chapter 6. Selected issues germane to older adults are addressed here. Historically, Federal financing policy has imposed special limits on reimbursement for mental health services. Medicaid precluded payment for care in so- called "institutions for mental diseases," Medicaid's term for mental hospitals and the small percentage of nursing homes with specialized mental health services. This Medicaid policy provided a disincentive for the majority of nursing homes to specialize in delivering mental health services for fear of losing Medicaid payments (Taube et al., 1990). Under Medicare, the most salient limits were higher copayments for outpatient mental health services and a limited number of days for hospital care. Medicare's special limits on outpatient mental health services were changed over the past decade, resulting in significantly increased access to and utilization of such services (Goldman et al., 1985; Rosenbach & Ammering, 1997). The concern, however, is that the gains made as a result of policy changes easily could be eroded by the shift to managed care (Rosenbach & Ammering, 1997). Increased Role of Managed Care Projections are that 35 percent of all Medicare beneficiaries will be in managed care plans by the year 2007, amounting to approximately 15.3 million people (Komisar et al., 1997). Although the managed care industry has the potential to provide a range of integrated services for people with long-term care needs, managed care's awareness of and response to chronic care are rudimentary (Institute for Health and Aging, 1996). Despite the potential of systems of managed health care, such as HMOs, to provide comprehensive preventive, acute, and chronic care services, their current specialized geriatric programs and clinical case management for older persons tend to be inadequate or poorly implemented (Friedman & Kane, 1993; Pacala et al., 1995; Kane et al., 1997). In addition, older patients are likely to be poorly served in primary care settings (including primary care HMOs) because of minimal use of specialty providers and suboptimal pharmacological management (Bartels et al., 1997). Further, current systems lack the array of community support, residential, and rehabilitative services necessary to meet the needs of older persons with more severe mental disorders (Knight et al., 1995). These shortcomings are unlikely to be remedied until more research becomes available demonstrating cost- effective models for treating older people with mental illness. Carved-In Mental Health Services for Older Adults The types of mental health services available within managed care organizations vary greatly with respect to how services are provided. In some organizations, mental health care is directly integrated into the package of general health care services ("carved-in" mental health services), while it is provided in others through a contract with a separate specialty mental health organization that provides only these services and accepts the financial risk ("carved-out" mental health services). Proponents of carved-in mental health services argue that this model better integrates physical and mental health care, decreases barriers to mental health care due to stigma, and is more likely to produce cost-offsets and overall savings in general health care expenditures. These features are particularly relevant to older persons, as they commonly have comorbid somatic disorders for which they take multiple medications that may affect mental disorders, often avoid specialty mental health settings. and incur significant health care expenses related to psychiatric 376 symptoms (George, 1992: Paveza & Cohen, 1996; soak. 1996; Riley et al., 1997). Unfortunately, mental health specialty services for older persons tend to be a low priority in managed health care organizations, by comparison with medical or surgical specialty services (Bartels et al., 1997). More importantly, carved-in mental health care may have superior potential for individuals with diagnoses such as minor depression and anxiety disorders but tends to shortchange older patients with SPMD who require intensive and long- term mental health care (Mechanic, 1998). The range of outreach, rehabilitative, residential, and intensive services needed for patients with SPMD is likely to exceed the capacity, expertise, and investment of most general health care providers. Economic factors also hay limit the usefulness of mental health carve-ins in serving the needs of older individuals with SPMD. First, evidence from private sector health plans suggests that without mandated parity, insurers offer inferior coverage of mental health care (Frank et al., 1997b, 1997~). Furthermore, if providers or payers compete for enrollees, there is strong incentive to avoid enrollees expected to have higher costs from mental health problems (e.g., older persons with SPMD). To avoid such discrimination, equal coverage of mental health care would have to be mandated through legislation on mental health parity or through specialized contract requirements with managed care organizations. Carved-Out Mental Health Services for Older Adults Proponents of mental health service carve-outs for older persons argue that separate systems of financing and services are likely to be superior for individuals needing specialty mental health services, especially those with SPMD. In particular, advocates suggest that carved-out mental health organizations have superior technical knowledge, specialized skills, a broader array of services, greater numbers and varieties of mental health providers with experience treating severe mental disorders, and a willingness and commitment to service high-risk populations (Riley et al., 1997). From an economic perspective, since competition is largely over Older Adults and Mental Health the carve-out contract with the payer (generally a public organization or an employer), there is less incentive to compete on risk selection, and risk adjustment becomes unnecessary. In addition, mental health carve-out organizations may be better equipped to provide rehabilitative and community support mental health services necessary to care for older persons with SPMD. Finally, growth of innovative outpatient alternatives could be stimulated by reinvestment of savings by the payer from any decrease in inpatient service use. Unfortunately, research is la'cking on outcomes and costs for older persons with SPMD in mental health carve-outs. A carve-out arrangement could lead to adverse clinical outcomes in older patients due to fragmentation of medical and mental health care services in a population with high risk of complications of comorbidity and polypharmacy. Also, from a financial perspective, the combination of physical and mental comorbidities seen in older adults, especially those with SPMD, may reduce the economic advantages of carved-out services (Bazemore, 1996; Felker et al., 1996; Tsuang & Woolson, 1997). If the provider cannot appropriately manage services and costs associated with the combination of somatic and mental health disorders, anticipated savings may not materialize. Furthermore, fragmentation of reimbursement streams would likely complicate the assessment of cost-effectiveness or cost-offsets. For example, apparent savings of mental health carve-outs under Medicare actually may be due to shifting costs when an individual is also covered under Medicaid. In this situation, Medicaid may cover prescription drugs, long-term care, and other services that are not paid for by Medicare. In order to offer true efficiencies, Medicare mental health carve-outs need to find a way to bridge the fragmentation of financing care for older persons. Outcomes Under Managed Care There do not appear to be any studies of mental health outcomes for older adults under managed care. In general, the available research on mental health outcomes for other adults consistently finds that 377 Mental Health: A Report of the Surgeon General managed care is successful at reducing mental health care costs (Busch, 1997; Sturm, 1997), yet clinical outcomes (especially for the most severely and chronically ill) are mixed and difficult to interpret due to differences in plans and populations served. Several studies suggest that outcomes under managed care for younger adults are as favorable as, or better than, those under fee-for-service (Lurie et al., 1992; Cole et al., 1994). In contrast, others report that the greater use of nonspecialty services for mental health care under managed care is associated with less cost-effective care (Sturm & Wells, 1995), and that older and poor chronically ill patients may have worse health outcomes or outcomes that vary substantially by site and patient characteristics (Ware et al., 1996). A recent review of health outcomes for both older and younger adults in the managed care literature (Miller & Luft, 1997) concluded that there were no consistent patterns that suggested worse outcomes. However, negative outcomes were more common in patients with chronic conditions, those with diseases requiring more intensive services, low-income enrollees in worse health, impaired or frail elderly, or home health patients with chronic conditions and diseases. These risk factors apply to older adults with SPMD, suggesting that this group is at high risk for poor outcomes under managed care programs that lack specialized long-term mental health and support services. To definitively address the question of mental health outcomes for older persons under managed care, appropriate outcome measures for older adults with mental illness will need to be developed and implemented in the evolving health care delivery systems (Bartels et al., in press). Other Services and Supports Older adults and their families depend on a multiplicity of supports that extend beyond the health and mental health care systems. Patients and caregivers need access to education, support networks, support and self- help groups. respite care, and human services, among other supports (Scott-Lennox & George, 1996). These services assume heightened importance for older people who are living alone, who are uncomfortable with formal mental health services, or who are inadequately treated in primary care. Services and supports appear to be instrumental not only for the patient but also for the family caregiver, as this section explains, but research on their efficacy is sparse. The strongest evidence surrounds the efficacy of services for family caregivers. Support for family caregivers is crucial for their own health and mental health, as well as for controlling the high costs of institutionalization of the family member in their care. The longer the patient remains home, the lower the total cost of institutional care for those who eventually need it. Support and Self-Help Groups Support groups, which are an adjunct to formal treatment, are designed to provide mutual support, information, and a broader social network. They can be professionally led by counselors or psychologists, but when they are run by consumers* or family members, they are known as self-help groups. The distinction is somewhat clouded by the fact that mental health professionals and community organizations often aid self-help groups with logistical support, start-up assistance, consultation, referrals, and education (Waters, 1995). For example, self-help support groups sponsored by the Alzheimer's Association use professionals to provide consultation to groups orchestrated by lay leaders. Support groups for people with mental disorders and their families have been found helpful for adults (see Chapter 4). Participation in support groups, including self-help groups, reduces feelings of isolation, increases knowledge, and promotes coping efforts. What little research has been conducted on older people is generally positive but has been limited mostly to caregivers (see later section) and widows (see below), rather than to older people with mental disorders. Despite the scant body of research, there is reason to believe that support and self-help group participation is as beneficial, if not more beneficial, for older people with mental disorders. Older people tend to live alone ' Consumers are people engaged in and served by mental health services. 378 and to be more socially isolated than are other people. They also are less comfortable with formal mental health services. Therefore, social networks established through support and self-help groups are thought to be especially vital in preventing isolation and promoting health. Support programs also can help reduce the stigma associated with, mental illness, to foster early detection of illnesses, and to improve compliance with formal interventions. Earlier sections of this chapter documented the untoward consequences of prolonged bereavement: severe emotional distress, adjustment disorders, depression, and suicide. Outcomes have been studied for two programs of self-help for bereavement. One program, They Help Each Other Spiritually (THEOS), had robust effects on those'who were more active in the program. Those widows and widowers displayed the improvements on health measures such as depression, anxiety, somatic symptoms, and self-esteem (Lieberman & Videka-Sherman, 1986). The other program, Widow to Widow: A Mutual Health Program for the Widowed, was developed by Silverman (1988). The evaluation in a controlled study found program participants experienced fewer depressive symptoms and recovered their activities and developed new relationships more quickly (Vachon, 1979; Vachon et al., 1980, 1982). Education and Health Promotion There is a need for improved consumer-oriented public information to educate older persons about health promotion and the nature of mental health problems in aging. Understanding that mental health problems are not inevitable and immutable concomitants of the aging process, but problems that can be diagnosed, treated, and prevented, empowers older persons to seek treatment and contributes to more rapid diagnosis and better treatment outcomes. With respect to health promotion, older persons also need information about strategies that they can follow to maintain their mental health. Avoiding disease and disability, sustaining high cognitive and physical function, and engaging with life appear to be Older Adults and Mental Health important ways to promote mental and physical health (Rowe & Kahn, 1997). The two are interdependent. Established programs for health promotion in older people include wellness programs, life review, retirement, and bereavement groups (see review by Waters, 1995). Although controlled evaluations of these programs are infrequent, bereavement and life review appear to be the best studied. Bereavement groups produce beneficial results, as noted above, and life review has been found to produce positive outcomes in terms of stronger life satisfaction, psychological well-being, self-esteem, and less depression (Haight et al., 1998). Life review also was investigated through individualized home visits to homebound older people in the community who were not depressed but suffered chronic health conditions. Life review for these older people was found to improve life satisfaction and psychological well-being (Haight et al., 1998). Another approach to promoting mental health is to develop a "social portfolio," a program of sound activities and interpersonal relationships that usher individuals into old age (Cohen, 1995b). While people in the modem work force are advised to plan for future economic security-to strive for a balanced financial portfolio-too little attention is paid to developing a balanced social portfolio to help to plan for the future. Ideally, such a program will balance individual with group activities and high mobilir;v/energy activities requiring significant physical exertion with lo+v mobiZio/energy ones. The social portfolio is a mental health promotion strategy for helping people develop new strengths and satisfactions. Families and Caregivers Among the many myths about aging is that American families do not care for their older members. Such myths are based on isolated anecdotes as opposed to aggregate data. Approximately 13 million caregivers, most of whom are women, provide unpaid care to older relatives (Biegel et al., 1991). Families are committed to their older members and provide a spectrum of assistance, from hands-on to monetary help (Bengston et al., 1985; Sussman, 1985; Gatz et al., 199% Cohen, 379 Mental Health: A Report of the Surgeon General 1995a). Problems occur with older individuals who have no children or spouse, thereby reducing the opportunity to receive family aid. Problems also occur with the "old-old," those over 85 whose children are themselves old and, therefore, unable to provide the same intensity of hands-on help that younger adult children can provide. These special circumstances highlight the need for careful attention to planning for mental health service delivery to older individuals with less access to family or informal support systems. Conversely, a large and growing number of older family members care for chronically mentally ill and mentally retarded younger adults (Bengston et al., 1985; Gatz et al., 1990; Eggebeen & Wilhelm, 1995). Too little is known about ways to help the afflicted younger individuals and their caregiving parents. Families are eager to help themselves, and society needs to find ways to better enable them to do so. There is a great need to better educate families about what they can do to help promote mental health and to prevent and treat mental health problems in their older family members. Families fall prey to negative stereotypes that little can be done for late-life mental health problems. They need to know that mental health problems in later life, like physical health problems, can be treated. They need to understand how to better recognize symptoms or signals of impending mental health problems among older adults so that they can help their loved ones receive early interventions. They need to know what services are available, where they can be found, and how to help their older relatives access such help when necessary. The plight of family caregivers is pivotal. As noted earlier, the burden of caring for an older family member places caregivers at risk for mental and physical disorders. Virtually all studies find elevated levels of depressive symptomatology among caregivers, and those using diagnostic interviews report high rates of clinical depression and anxiety (Schultz et al., 1995). Ensuring their mental and physical health is not only vital for their well-being but also is vital for the older people in their care. Support groups and services aimed at caregivers can improve their health and quality of life, can improve management of patients in their care, and can delay their institutionalization. Communities and Social Services Family support is often supplemented by enduring long-term relationships between older people and their neighbors and community, including religious, civic, and public organizations (Scott-Lennox & George, 1996). Linkages to these organizations instill a sense of belonging and companionship. Such linkages also provide a safety net, enabling some older people to live independently in spite of functional decline. While the vast majority of frail and homebound older people receive quality care at home, abuse does occur. Estimates vary, but most studies find rates of abuse by caregivers (either family or nonfamily members) to range up to 5 percent (Coyne et al., 1993; Scott-Lennox & George, 1996). Abuse is generally defined in terms of being either physical, psychological, legal, or financial. The abuse is most likely to occur when the patient has dementia or late- life depression, conditions that impart relatively high psychological and physical burdens on caregivers (Coyne et al., 1993). A recent report by the Institute of Medicine describes the range of interventions for protection against abuse of older people, including caregiver participation in support groups and training programs for behavioral management (especially for Alzheimer's disease) and social services programs (e.g.. adult protective services, casework, advocacy services, and out-of-home placements). While there are very few controlled evaluations of these services (IOM, 1998), communities need to ensure that there are programs in place to prevent abuse of older people. Programs can incorporate any of a number of effective psychosocial and support interventions for patients with Alzheimer's disease and their caregivers- interventions that were presented earlier in this section and the section on Alzheimer's disease. Communities need to ensure the availability of adult day care and other forms of respite services to aid caregivers striving to care for family members at home. They also can provide assistance to self-help and other support programs for patients and caregivers. In the 380 process of facilitating or providing services, communities need to consider the diversity of their older residents-racial and ethnic diversity, socio- economic diversity, diversity in settings where they live, and diversity in levels of general functioning. Such diversity demands comprehensive program planning, information and referral services (including directories of what is available in the community), strong outreach initiatives, and concerted ways to promote accessibility. Moreover, each component of the community-based delivery system targeting older adults should incorporate a clear focus on mental health. Too often, attention to mental health services for older people and their caregivers is negligible or absent, despite the fact, as noted earlier, that mental health problems and care$ver distress are among the leading reasons for institutionalization (Lombardo, 1994). Important life tasks remain for individuals as they age. Older individuals continue to learn and contribute to society, in spite of physiologic changes due to aging and increasing health problems. Conclusions 1. 2. 3. 4. 5. Important life tasks remain for individuals as they age. Older individuals continue to ,learn and contribute to the society, in spite of physiologic changes due to aging and increasing health problems. Continued intellectual, social. and physical activity throughout the life cycle are important for the maintenance of mental health in late life. Stressful life events, such as declining health and/or the loss of mates, family members, or friends often increase with age. However, persistent bereavement or serious depression is not "normal" and should be treated. Normal aging is not characterized by mental or cognitive disorders. Mental or substance use disorders that present alone or co-occur should be recognized and treated as illnesses, Disability due to mental illness in individuals over 65 years old will become a major public health problem in the near future because of demographic changes. In particular, dementia, depression, and Older Adults and Mental Health schizophrenia, among other conditions, will all present special problems in this age group: a. Dementia produces significant dependency and is a leading contributor to the need for costly long-term care in the last years of life; b. Depression contributes to the high rates of suicide among males in this population; and c. Schizophrenia continues to be disabling in spite of recovery of function by some individuals in mid to late life. 6. There are effective interventions for most mental disorders experienced by older persons (for example, depression and anxiety), and many mental health problems, such as bereavement. 7. Older individuals can benefit from the advances in psychotherapy, medication, and other treatment interventions for mental disorders enjoyed by younger adults, when these interventions are modified for age and health status. 8. 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Journal of Clinical Psychiatry, 59, 241-245. 401 CHAPTER 6 ORGANIZING AND FINANCING MENTAL HEALTH SERVICES Contents Overview of the Current Service System ............................................ 405 The Structure of the U.S. Mental Health Service System ............................ 405 The Public and Private Sectors ................................................ 407 PatternsofUse ............................................................. 408 Adults.. ............................................................... 408 Children and Adolescents .................................................. 409 The Costs of Mental Illness ............................ ........................ 411 Indirect Costs .................................... ........................ 411 Direct Costs ..................................... ........................ 412 Mental Health Spending ........................... ........................ 413 Spending by the Public and Private Sectors ............ ........................ 413 Trends in Spending ............................... ........................ 41.5 Mental Health Compared With Total Health ........... ........................ 416 Financing and Managing Mental Health Care ........................................ 4 18 History of Financing and the Roots of Inequality ................................... 418 Goals for Mental Health Insurance Coverage ...................................... 418 Patterns of Insurance Coverage for Mental Health Care ............................. 418 Traditional Insurance and the Dynamics of Cost Containment ........................ 419 ManagedCare .............................................................. 420 MajorTypesofManagedCarePlans ......................................... 421 TheAscentofManagedCare ............................................... 422 Dynamics of Cost Controls in Managed Care ..................................... 423 Managed Care Effects on Mental Health Services Access and Quality .................. 423 Impact on Access to Services .................................................. 424 Impact on Quality of Care ..................................................... 424 Contents, continued Toward Parity in Coverage of Mental Health Care ..................................... 426 Benefit Restrictions and Parity ................................................ : 426 Legislative Trends Affecting Parity in Mental Health Insurance Coverage ............... 427 Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 428 Appendix 6-A: Quality and Consumers' Rights . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 430 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 430 CHAPTER 6 T his chapter examines what recent research has revealed about the organization and financing of mental health services as well as the cost and quality of those services. The discussion places emphasis on the tremendous growth of managed care and the attempts to gain parity in insurance. Understanding these issues can inform the decisions made by people with mental health problems and disorders, as well as their family members and advocates, and health care administrators and policymakers. Earlier chapters reviewed data on the occurrence of mental disorders in the population at large and described the treatment system. In each stage of the life cycle, issues related to mental health services have been discussed, including, for example, the breadth of mental health and human services involved in caring for children with mental health problems and disorders; deinstitutionalization and its role in shaping contemporary mental health services for children and adults; the problems associated with discontinuity of care in a fragmented service system; and the impor tance of primary care medical providers in meeting the mental health needs of older persons. Special mental health services concerns such as homelessness, crim- inalization of persons with mental illness, and dis- parities in access to and utilization of mental health services due to racial, cultural, and ethnic identities as well as other demographic characteristics have been discussed throughout the report. There are four main sections in this chapter. The first section provides an overview of the current system of mental health services. It describes where people get care and how they use services. The next section presents information on the costs of care and trends in spending. The third section discusses the dynamics of ORGANIZING AND FINANCING MENTAL HEALTH SERVICES insurance financing and managed care. It also addresses both positive and adverse effects of managed care on access and quality and describes efforts to guard against untoward consequences of aggressive cost- containment policies. The final section documents some of the inequities between general medical and mental health care and describes efforts to correct them through legislation, regulation, and financing changes. Overview of the Current Service System The Structure of the U.S. Mental Health Service System A broad array of services and treatments exists to help people with mental illnesses-as well as those at particular risk of developing them-to suffer less emotional pain and disability and live healthier, longer, and more productive lives. Mental disorders and mental health problems are treated by a variety of caregivers who work in diverse, relatively independent, and loosely coordinated facilities and services-both public and private-that researchers refer to, collectively, as the de facto mental health service system (Regier et al., 1978; Regier et al., 1993). About 15 percent of all adults and 21 percent of U.S. children and adolescents use services in the de k_ fact6:ystemeach year. The system is usually described as having four major components or sectors: o The specialty mental health sector consists of mental health professionals such as psychiatrists, psychologists, psychiatric nurses, and psychiatric social workers who are trained specifically to treat 405 Mental Health: A Report of the Surgeon General people with mental disorders. The great bulkof specialty treatment is now provided in outpatient settings such as private office-based practices or in private or public clinics. Most acute hospital care is now provided in special psychiatric units ,of general hospitals or beds scattered throughout general hospitals. Private psychiatric hospitals and residential treatment centers for children and adolescents provide additional intensive care in the private sector. Public sector facilities include state/county mental hospitals and multiservice mental health facilities, which often coordinate a wide range of outpatient, intensive case manage- ment, partial hospl"talization, and inpatient services. Altogether, slightly less than 6 percent of the adult population and about 8 percent of children and adolescents (ages 9 to 17) use specialty mental health services in a year. o The general medical/primary care sector consists of health care professionals such as general internists, pediatricians, and nurse practitioners in office-based practice, clinics, acute medicaY surgical hospitals, and nursing homes, More than 6 percent of the adult U.S. population use the general medical sector for mental health care, with an average of about 4 visits per year-far lower than the average of 14 visits per year found in the specialty mental health sector.' The general medi- cal sector has long been identified as the initial point of contact for many adults with mental disorders; for some, these providers may be their only source of mental health services. However, only about 3 percent of children and adolescents contact general medical physicians for mental ' The National Comorbidity Survey, using a single interview requiring a 12-month recall period, determined that 4 percent of adults sought mental or addictive treatment services from primary care physicians. With a more intensive examination of primary health care use involving three interviews about service use during a 1 -year period in the Epidemiologic Catchment Area study, more than 6 percent of adults indicated that they specifically spoke with their general medical physicians about their "emotions, nerves, drugs or alcohol." health services; the human services sector (see below) plays a much larger role in their care. o The human services sector consists of social services, school-based counseling services, residential rehabilitation services, vocational rehabilitation, criminal justice/prison-based ser- vices, and religious professional counselors. In the early 198Os, about 3 percent of U.S. adults used mental health services from this sector. But by the early 199Os, the National Comorbidity Survey (NCS) revealed that 5 percent of adults used such services. For children, school mental health ser- vices are a major source of care (used by 16 percent), as are services in the child welfare and juvenile justice systems, which serve about 3 per- cent. o The voluntary support network sector, which consists of self-help groups, such as 12-step programs and peer counselors, is a rapidly growing component of the mental and addictive disorder treatment system. The Epidemiologic Catchment Area (ECA) study demonstrated that about 1 per- cent of the adult population used self-help groups in the early 1980s; the NCS showed a rise to about 3 percent in the early 1990s. Table 6-l summarizes the percentage of U.S. adults who use different sectors of the de facto mental health treatment system. (There is overlap across these sectors because some people use services in multiple sectors.) Table 6-2 summarizes the percentage of U.S. children and adolescents using various sectors of this system. Table 6-l. Proportion of adult population using mental/ addictive disorder services in one year I Total Health Sector ll%* Specialty Mental Health 6% / General Medical 6% Human Services Professionals 5% Voluntary Support Network 3% I Any of Above Services 15% L *Subtotals do not add to total due to overlap. Source: Regier et al., 1993; Kessler et al., 1996 406 Table 6-2. Proportion of child/adolescent populations (ages 9-l 7) using mental/addictive disorder services in one year Total Health Sector 9%' Specialty Mental Health 8% General Medical 3% Human Services Professionals 17%' School Services 16% Other Human Services 3% Any of Above Services 21% `Subtotals do not add to total due to overlap. Source: Shaffer et al., 1996 The Public and Privite Sectors The de facto mental health service system is divided into public and private sectors. The term "public sector" refers both to services directly operated by government agencies (e.g., state and county mental hospitals) and to services financed with government resources (e.g., Medicaid, a Federal-state program for financing health care services for people who are poor and disabled, and Medicare, a Federal health insurance program primarily for older Americans and people who retire early due to disability). Publicly financed services may be provided by private organizations. The term "private sector" refers both to services directly operated by private agencies and to services financed with private resources (e.g., employer-provided insurance). Funding for the de facto mental health service system is discussed later in the report. State and local government has been the major payer for public mental health services historically and remains so today. Since the mid-1960s however, the role of the Federal government has increased. In addition to Medicare and Medicaid, the Federal government funds special programs for adults with serious mental illness and children with serious emotional disability. Although small in relation to state and local funding, these Federal programs provide additional resources. They include the Community Mental Health Block Grant, Community Support Organizing and Financing Mental Health Set-vices programs, the PATH program for people with mental illness who are homeless, the Knowledge Development and Application Program, and the Comprehensive Community Mental Health Services for Children and Their Families Program. The fact that 16 percent of the U.S. adult population-largely the working poor-have no health insurance at all is the focus of considerable policy activity. Many others are inadequately insured. Ini- tiatives designed to increase enrollment for selected populations include the newly created Child Health Insurance Program, which provides block grants to r states for coverage of children not eligible for Medicaid. These federally funded public sector programs buttress the traditional responsibility of state and local mental health systems and serve as the mental health service "safety net" and "catastrophic insurer" for those citizens with the most severe problems and the fewest resources in the United States. The public sector serves particularly those individuals with no health insurance, those who have insurance but no mental health coverage, and those who exhaust limited mental health benefits in their health insurance. Each sector of the de facto mental health service system has different patterns and types of care and different patterns of funding. Within the specialty mental health sector, state- and county-funded mental health services have long served as a safety net for people unable to obtain or retain access to privately funded mental health services. The general medical sector receives a relatively greater proportion of Federal Medicaid funds, while the voluntary support network sector, staffed principally by people with mental illness and their families, is largely funded by private donations of time and money to emotionally supportive and educational groups. The relative quality of care in these various sectors is a matter of intense interest and discussion, although there is little definitive research to date. Effective functioning of the mental health service system requires connections and coordination among many sectors (public-private, specialty-general health. health-social welfare, housing, criminal justice, and 407 Mental Health: A Report of the Surgeon General education). Without coordination, it can readily become organizationally fragmented, creating barriers to access, Adding to the system's complexity is its dependence on many streams of funding, with their sometimes competing incentives. For example, if as part of a Medicaid program reform, financial incentives lead to a reduction in admissions to psychiatric inpatient units in general hospitals and patients are sent to state mental hospitals instead, this cost containment policy con- ceivably could conflict with a policy directive to reduce the census of state mental hospitals. The public and private parts of the de facto mental health system treat distinct populations with some overlap. As shown in Table 6-1, 11 percent of the U.S. population use specialty or general medical mental health services each year. Nearly 10 percent of the population-almost all users-received some care in private facilities, while 2 percent of the population received care in public facilities. About 1 percent of the population used inpatient care; of these, one-third received care in the public sector, suggesting that those requiring more intensive services rely more heavily on the public safety net (Regier et al., 1993; Kessler et al., 1994). Nonetheless, many people with severe and persistent illness now receive at least some of their care in the private sector. This makes it important to ensure that the private sector can meet the full treatment needs of this population. Patterns of Use Adults Americans use the mental health service system in complex ways, or patterns. A total of about 15 percent of the U.S. adult population use mental health services in any given year. These data come from two epidemiologic surveys: the Epidemiologic Catchment Area (ECA) study of the early 1980s and the National Comorbidity Survey (NCS) of the early 1990s. Those surveys defined mental illness according to the prevailing editions of the Diagnosric and Statistical Manual of Mental Disorders (i.e., DSM-III and DSM- IILR) and defined mental health services in accordance with the "de facto" system described above. Figure 6- 1 presents a hierarchy of sectors in the treatment system (i.e., specialty mental health, general medical, and other human services).' About 6 percent of the adult population use specialty mental health care; 5 percent of the population receive their mental health services from general medical and/or human services providers, and 3 to 4 percent of the population receive their mental health services from other human service professionals or self-help groups. (The overlap across these latter two sectors accounts for these figures totaling more than 15 percent) (Figure 6-l). Also, slight19 more than half of the 15 percent of the population that use mental health services have a specific mental or addictive disorder (8 percent), while the remaining portion has a mental health problem or a disorder not included in the ECA or NCS (7 percent). The surveys estimate that during a 1-year period, about one in five American adults-or 44 million people- have diagnosable mental disorders, according to reliable, established criteri; To be more specific, 19 percent of thq'bdult U.S. population have a mental disorder alone.&r 1 year); 3 percent have both mental and addictive disorders; and 6 percent have addictive disorders alone.`Consequently, about 28 percent of the population have either a r&ental or addictive disorder (Regier et al., 1993; Kessler et al., 1994). Given that 28 percenz; of the population have a diagnosable mental or substance abuse disorder and only 8 percent of adults both have a diagnosable dis- order and use mental health services, one can conclude that less than one-third of adults with a diagnosable mental disorder receives treatment in one year. In short, a substantial majority of those with specific mental disorders do not receive treatment. Figure 6-l depicts the 28 percent of the U.S. adult population who meet full criteria for a mental or addictive disorder, and illustrates that 8 percent receive mental health services while 20 percent do not receive such services in a given year. Among the service users with specific disorders, between 30 and 40 per&& perceived some need for 2 For those who use more than one sector of the service system, preferential assignment is to the most specialized level of mental health treatment in the system. care. However, most of those with disorders who did not seek care believed their problems would go away by themselves or that they could handle them on their own (Kessler et al., 1997). In a recent 1998 Robert Wood Johnson national household telephone survey, 11 percent of the population perceived a need for mental or addictive services, with about 25 percent of these reporting difficulties in obtaining needed care (Sturm & Sherboume, 1999). Worry about costs was listed as the highest reason for not receiving care, with 83 percent of the uninsured and 55 percent of the privately insured listing this reason. The inability to obtain an appointment soon enough because of an insufficient supply of services was listed by 59 percent of those with Medicaid but by far fewer of those with private insurance. . Children and Adolescents Comparable data on service use by children and adolescents with diagnoses of mental disorder and at least minimal impairment only recently have been obtained from a National Institute of Mental Health (NIMH) multisite survey of children and adolescents ages 9 to 17 years (Shaffer et al., 1996). Results from this survey are summarized in Table 6-2 and in Figure 6-2. Although 9 percent of the entire child/adolescent sample received some mental health services in the health sector (that is, the general medical sector and specialty mental health sector), the largest provider of mental health services to this population was the school system. As shown in Figure 6-2, nearly 11 percent of the child/adolescent sample received their mental health services exclusively from the schools or the human services sector (with no services from the health sector); another 5 percent (not shown in Figure 6-2) received school services in addition to health sector services. Many children served by schools do not have diagnosable mental health conditions covered in available surveys-some may have other diagnoses such as adjustment reactions or acute stress reactions. In addition, I percent of children and adolescents received their mental health services from human service professionals, such as those in child welfare and Organizing and Financing Mental Health Services juvenile justice. The latter is a setting under increasing scrutiny as the result of pending Federal legislation. At present, child data are unavailable that would exactly match the adult data on service use (analyzed by diagnostic severity and by public versus private sectors). Almost 21 percent of children and adolescents (ages 9 to 17) had some evidence of distress or impairment associated with a specific diagnosis and also had at least a minimal level of impairment on a global assessment measure. Almost half of this group (almost 10 percent of the child/adolescent population) had some treatment in one or more sectors of the de facto mental health service system, and the remainder (more than 11 percent of the population) received no treatment in any sector of the health care system. This translates to a majority with mental disorders not receiving any care. Of the 21 percent of the young population receiving any mental health services, slightly less than half (about 10 percent) met full criteria for a mental disorder diagnosis; the remainder (more than I1 percent of the population) received diagnostic or treatment services for mental health problems, conditions that do not fully meet diagnostic criteria (Shaffer et al., 1996). In summary, the mental health treatment system is a dynamic array of services accessed by patients with different levels of disorder and severity, as well as different social and medical service needs and levels and types of insurance financing. Disparities in access due to sociocultural factors have been described in earlier sections of this report. In a system in which substantial numbers of those with even the most severe mental illness do not receive any mental health care in a year, the match between service use and service need is clearly far from perfect. Neither the number nor the proportion of people with mental health problems who need or want treatment is yet established, and many factors influence perceived need for treatment. including severity of symptoms and functional disability as well as cultural factors. But obviously not everyone with a diagnosable mental disorder perceives a need for treatment, and not all who desire treatment have acurrently diagnosable disorder. Providing access 409 Mental Health: A Report of the Surgeon General Figure 6-l. Annual prevalence of mental/addictive disorders and services for adults Percent of Population (28%) With MentaUAddictive Disorders (in one year) Percent of Population (15%) Receiving Mental Health Services' (in one year) _______---_--_---------- Percent of Population Receiving Specialty Care (6%) _____-_-----_------- No Treatment Percent of Population Receiving General Medical Care (5%) ________-_---------- Percent of Population Receiving Other Human Services and Voluntary Support (4%) _______-_--_--_---------- * Due to roundin;, it appears that 9 percent of the population has a diagnosis and receives treatment. The actual figure is closer to 8 percent, as stated in the text. It also appears that 6 percent of the population receives services but has no diagnosis, due to rounding. The actual total is 7 percent, as stated in the text. ** For those who use more than one sector of the service system, preferential assignment is to the most specialized level of mental health treatment in the system. Sources: Regier et al., 1993; Kessler et al., 1996 Figure 6-2. Annual prevalence of mentavaddictive disorders and services for children Percent of Population (21%) With MentaUAddlctive Disorders (in one year) Percent of Populatlon (21%) Recelvfng Mental Health Servlces (in one year) Diagnosis and No Treatment (11%) Percent of Population Receiving Specialty Care (6%) -----_--_--_----. Percent of Population Receiving General Medical Care (1%) -------_-------- Percent of Population Receiving School Services (11%) ------- -_,-__- :--- Percent of Populatton Receiving Other Human Services and Voluntary Support (1%) __-_--_--_--_-------- ** For those who use more than one sector of the service system, preferential assignment IS to the mOSt specialized level of mental health treatment in the system. Source: Shaffer et al., 1996 410 to appropriate mental health services is a fundamental concern for mental health policymakers in both the public and private arenas. The Costs of Mental Illness As many of the preceding chapters have indicated, mental disorders impose an enormous emotional and financial burden on ill individuals and their families. They are also costly for our Nation in reduced or lost productivity (indirect costs) and in medical resources used for care, treatment, and rehabilitation (direct costs). Indirect Costs The indirect costs of all mental illness imposed a nearly $79 billion loss on the U.S. economy in 1990 (the most recent year for which estimates are available) (Rice & Miller, 1996). Most of that amount ($63 billion) reflects morbidity costs-the loss of productivity in usual activities because of illness. But indirect costs also include almost $12 billion in mortality costs (lost productivity due to premature death), and almost $4 billion in productivity losses for incarcerated indi- viduals and for the time of individuals providing family Organizing and Financing Mental Health Services care. For schizophrenia alone, the total indirect cost was almost $15 billion in 1990. These indirect cost estimates are conservative because they do not capture some measure of the pain, suffering, disruption, and reduced productivity that are not reflected in earnings. The fact that morbidity costs comprise about 80 percent of the indirect costs of all mental illness indicates an important characteristic of mental dis- orders: Mortality is relatively low, onset is often at a younger age, and most of the indirect costs are derived from lost or reduced productivity at the workplace, school, and home (Rupp et al.; 1998). The Global Burden of Disease, a recent publication of the World Bank and the World Health Organization, reported on a study of the indirect costs of mental disorders associated with years lived with a disability, with and without years of life lost due to premature death. Disability Adjusted Life Years (DALYs) are now being used as a common metric for describing the burden of disability and premature death resulting from the full range of mental and physical disorders throughout the world (Figure 6-3). A striking finding from the study has been that mental disorders account for more than 15 percent of the burden of disease in Figure 6-3. Global burden of disease*--DALYs'* worldwide-1990 Disorders I Conditions o Global Burden of Disease (Murray & Lopez, 1996) o * DALYs - Disability Adjusted Life Years 411 Mental Health: A Report of the Surgeon General established market economies; unipolar major depression, bipolar disorder, schizophrenia, and obsessive-compulsive disorder are identified as among the top 10 leading causes of disability worldwide (Murray & Lopez. 1996). Direct Costs Mental health expenditures for treatment and rehabil- itation are an important part of overall health care spending but differ in important ways from other types of health care spending. Many mental health services are provided by separate specialty providers-such as psychiatrists, psychologists, social workers, and nurses in office practice-or by facilities such as hospitals, . multiservice mental health organizations, or residential mental health services is typically less generous than that for general health, and government plays a larger role in financing mental health services compared to overall health care. In 1996, the United States spent more than $99 billion for the direct treatment of mental disorders, as well as substance abuse, and Alzheimer's disease and other dementias (Figure 6-4). More than two-thirds of this amount ($69 billion or more than 7 percent of total health spending) was for mental health services. Spending fo? direct treatment of substance abuse was almost $13 billion (more than 1 percent of total health spending), and that for Alzheimer's disease and other dementias was almost $18 billion (almost 2 percent of total health spending) treatment centers for children. Insurance coverage of (Figure 6-4).3 Figure 6-4. 1996 National health accounts, $943 billion total-$99 billion* mental, addictive, and dementia disorders Other Physical Disorde 90% = $8430 Mental Disorders Alzheimer's/Dementias Addictive Disorders * Figures add to more than $99 billion due to rounding. Source: Mark et al., 1998, and additional analyses performed by Mark et al. for this report. 3 Figure 6-4 comes from the spending estimates project conducted by the Center for Mental Health Services and the Center for Substance Abuse Treatment. Substance Abuse and Mental Health Services Administration. It is limited to spending for formal treatment of disorders and excludes spending for most services not ordinarily classified as health care. Some of these data come directly from the most recent report published by this project (Mark et al., 1998), while others are based on unpublished data. Further, minor modifications in estimation methodology have been made since the Mark et al, (1998) report to meet the special requirements of the Surgeon General's report. The estimates presented here differ from those published previously by Rice and her colleagues (Rice et al., 1990) in several important respects. First. they are limited to a definition of mental illness that more closely reflects what most payers regard as mental disorders. Diagnostic codes such as mental retardation and non-mental health comorbid conditions, which were included in the Rice study, have not been used. Second. they are based on data sources that were not available at the time of the Rice study. Finally, they result from a different approach to estimation. which emphasizes linkage to the National Health Accounts published by the Health Care Financing Administration. Although Alzheimer's disease and other dementias are not discussed further in this chapter, the reader should note that the definition of serious mental illness promulgated by the Center for Mental Health Services includes these disorders. Further. care of these patients is a major role of the public mental health system. It12 Despite the historical precedent for linking all these disorder groups together for diagnostic and cost accounting purposes, they are handled differently by payers and providers. A majority of private health insurance plans have a benefit that combines coverage of mental illness and substance abuse. However. most of the treatment services for mental illness and for substance abuse are separate (and use different types of providers), as are virtually all of the public funds for these services. This separation causes problems for treating the substantial proportion of individuals with comorbid mental illness and substance abuse disorders, who benefit from treating both disorders together (Drake et al., 1998). Alzheimer's disease and other dementias historical- ly have been considered as both mental and somatic disorders. However, recent efforts to destigmatize dementias and improve care have removed some insurance coverage limitations. Once mostly the province of the public sector, Alzheimer's disease now enjoys more comprehensive coverage, and care is better integrated into the private health care system. Inequities in coverage are diminishing (U.S. Department of Health and Human Services Task Force on Alzheimer's Disease, 1984; Goldman et al., 1985). As indicated, coverage differs for treatment of substance abuse and Alzheimer's disease. With respect to financing policy, both conditions are outside the scope of this report (although some services aspects of Alzheimer's disease are discussed in Chapter 5); thus, Organizing and Financing Mental Health Services they will not be included in the spending estimates that follow. Mental Health Spending Of the $69 billion spent in 1996 for diagnosis and treatment of mental illness (see Figure 6-5), more than 70 percent was for the services of specialty providers. with most of the remainder for general medical services providers." The distribution for all types of providers is shown in the figure. I Spending by the Public and Private Sectors Funding for the mental health service system comes from both public and private sources [Table 6-3 and Figure 6-6 (percent distribution) and Table 6-4 (dollar distribution and per capita mental health costs)]. In 1996, approximately 53 percent ($37 billion) of the funding for mental health treatment came from public payers. Of the 47 percent ($32 billion) of expenditures from private sources, more than half ($18 billion) were from private insurance. Most of the remainder was out- of-pocket payments. These out-of-pocket payments include copayments from individuals with private in- surance, copayments and prescription costs not covered by Medicare or Medigap (i.e., supplementary) insurance, and payment for direct treatment from the uninsured or insured who choose not to use their insur- ance coverage for mental health care. ' In estimating mental health expenditures, spending can be categorized by provider type, which includes both general medical service providers and specialty mental health providers. Since spending for mental health services in the human services sector is not covered by health insurance or included in the national health accounts, neither total costs nor total spending estimates for mental health services are covered under these direct cost figures, Indirect costs generally include estimates of lost productivity as well as disability insurance and the costs of treating those with mental illness in the criminal justice system. Hence, it is not possible to provide completely parallel analyses of the prevalence of mental disorders in the population, the prevalence of treatment in different service sectors, and expenditures in the treatment system. However, the estimate given here is the best approximation of that intent. For purpose of these analyses, general medical service providers include community hospitals, nursing homes, non-psychiatrist physicians. and home health agencies. An intermediate funding category is that of prescription medications, which are prescribed in both general medical and specialty mental health settings, Other than prescription medications, 18 percent of total mental health funds are allocated in this analysis to the general medical sector. which provides some mental health services to slightly more than half of all persons (about 6 Percent of the population) using any services in the health system during 1 year. Specialty providers include psychiatric hospitals. psvchiatrists. office-practice psychologists and counselors (including social workers and psychiatric nurses), residential treatment centers for-children. and multiservice mental health organizations. These mental health specialists provided some mental health services to nearly 6 percent of the population-also about half of all people requesting such services from health and mental health services in the health system. 413 Mental Health: A Report of the Surgeon General Figure 6-5. 1996 National health accounts, $69 billion total mental health expenditures by provider type Multi-Sv 18% Psychiatrists GM Physicians T;y/chiatry Hospitals OO Source: Mark et al., 1998 (Revised) Figure 6-6. Mental health expenditures by payer-1996 (total = $69 billion) ULI ler maera 2% As Medicaid (PUN Private: 473 Private Insurance 27% Medic> 14% Other Private 3% I Source: Mark et al., 1998 (Revised) 414 Table 6-3. Distribution of 1996 U.S. population and mental disorder direct costs by insurance status Insurance Status Population Direct Costs Private 63%' 47% Public *a)* 53% Medicare 13%" 14% Medicaid 12%" 19% Uninsured State/Local Other Federal tt. - 16% 18% *t* 2% Total 100% 100% * About 70 percent of the population has some private insurance-reflecting the fact that 7 percent of the population has both Medicare and Medigap or other dual private insurance coverage. Although 61 percent of the population has employment-based private insurance, this percentage also includes some military insurance coverage. o * Since 2 percent of the population has both Medicare and Medicaid insurance coverage, adding this duplicated count to each insurance category results in the first column adding to a duplicated total of 104 percent. *** Although some state/local/and other Federal government support goes to those who are. underinsured in the private and public insured groups, these funds are primarily allocated to the uninsured population. Source: Mark et al., 1998 (Revised) J Trends in Spending Between 1986 and 1996, mental health expenditures grew at an average annual growth rate of more than 7 percent (Table 6-5). Because of changes in population, reimbursement policies, and legislative and regulatory requirements during this decade, the share of mental health funding from public sources grew from 49 percent to 53 percent. Overall, the rate of growth in the public sector was slightly more than 8 percent per year (Medicare and Medicaid, both about 9 percent; state/local government, nearly 8 percent). Organizing and Financing Mental Health Services Table 6-4. Population, spending, and per capita mental he&h costs by insurancestatus (1996) isurance Status `rivate Insurance Payment Out-of-Pocket Payment Other Private Medicare Medicaid Xher and Jninsured SPMI* Other `otal Number Spending (millions) ($ billions) 167.5 32.3 18.4 11.7 2.2 30.6 9.8 27.0 13.0 41.7 13.9 5.1 12.4 36.6 1.5 266.8 69.0 Severe and persistent mental illness `er Capita 6 per year) 193 I 320 ! 481 1 I 333 1 2,431 41 259 j / I source: Mark et al., 1998, and calculations by D. Regier, personal communication, 1999 In the private sector, out-of-pocket costs increased only 3 percent, which, together with the private insurance increases of almost 9 percent, resulted in a net private cost increase of little more than 6 percent- significantly lower than the increase found in the public sector. 415 Mental Health: A Report of the Surgeon General Table 6-5. Mental health expenditures in relation to national health expenditures, by source of payer, annual growth rate (1986-1996) Average Annual Growth Rate (1986-l 996) Mental All Health Health Care Care srivate Out-of-Pocket Payment 3% 5% Private Insurance 9% 9% Other Private 7% 7% rotal Private 6% 7% Public Medicare Medicaid Other Federal Government State/Local Government Total Public - 9% 10% 9% 13% 4% 6% 8% 10% 8% 10% Total Expenditures 7% 8% Source: Mark et al., 1998 (Revised) Among the fastest-rising expenses for mental health services were outpatient prescription drugs, which account for about 9 percent of total mental health direct costs (Figure 6-5). Although these medications are prescribed in both specialty and general medical sectors, they are increasingly being covered under general medical rather than mental health private insurance benefits. The higher than average growth rate (almost 10 percent) of spending for prescription drugs reflects, in part, the increasing availability and application of medications of demonstrable efficacy in treating mental disorders. Estimates from the National Ambulatory Medical Care Survey show that the number of visits during which such medication was prescribed increased from almost 33 million in 1985 to almost 46 million in 1994. Only one-third of psychotropic medications are now prescribed by psychiatrists, with two-thirds prescribed by primary care physicians and other medical specialists (Pincus et al., 1998). Although Medicaid covers 21 percent of drug costs (and state/local/other Federal government covers 4 percent), Medicare does not cover prescription drugs. Although many older adults have supplemental insurance that does cover prescription drugs, the failure to cover any prescription drugs under Medicare is a barrier to effective treatment among the elderly who cannot afford supplemental insurance. Mental Health Compared With Total Health Mental health spending figures acquire more meaning when they are compared with thqse for all health care. Annually, the Health Care Financing Administration produces estimates of this spending. These estimates include nearly all of the expenditures presented for mental health services. However, some specialty pro- viders who work in social service industries are ex- cluded from the national health care spending estimates. Accordingly, mental health estimates require adjustment to allow direct comparison with these national figures, reducing the total from $69 billion cited earlier to $66 billion (Table 6-6). Table 6-6. Mental health expenditures in relation to national health expenditures, by source of ili ~ Care Care Percentage / "ci, Out-of-Pocket $11 $171 6% Private Insurance $17 $292 6% Other Private $2 $32 5% /Total Private $30 $495 6% ~ Public Medicare $10 $198 5% Medicaid $13 $140 9% Other Federal Government $1 $41 3% State/Local Government $12 $69 18% iTotal Public $36 $447 8% / I iTotal Expenditures $66 $943 7% /Source: Mark et al., 1998 (Revised) 316 Organizing and Financing Mental Health Services Estimated total health care expenditures were $943 billion in 1996. Of this amount, 7 percent was for mental health services. Table 6-6 describes expen- ditures on mental health services as a percentage of national health spending by source of payment. The significance of mental health spending for various payers varies from a low of only 3 percent of "other" Federal government spending to a high of 18 percent of health care expenditures by state and local govem- ments. Between 1986 and 1996, spending for mental health treatment grew more slowly than health care spending in general, increasing by more than 7 percent annually, compared with health care's overall rate of more than 8 percent (see Table 6-5). This difference may stem from the greater reliance of mental health services on managed care cost-containment methods during this period. Increased efficiency could account for a slower rate of growth in mental health care expenditures. Slowing of the growth rate in the public sector may also be due to other Federal and state government policies, such as limitations in states' ability to use certain Medicaid funds to support state mental hospitals and states' greater emphasis on community-based outpatient care as opposed to inpatient care. Finally, it may also reflect the greater contribution of institutional care, particularly in nursing homes, to total health care figures. Changes in these components affect overall growth rates more in general health care than in mental health care. For most provider categories, the rise in mental health spending was not much different than spending growth rates for personal health care, with the exception of home health (higher) and nursing home (lower) expenditures. For various types of payers, spending growth in mental health care has been about the same or less than that in general health care. Mental health spending in Medicare, Medicaid, and other Federal programs has grown more slowly than overall program spending. For private sources, the growth rate of mental health out-of-pocket expenditures has been below that of total out-of-pocket spending (see Table 6-5). During the past two decades there have been important shifts in what parties have final responsibility for paying for mental health care. The role of direct state funding of mental health care has been reduced. whereas Medicaid funding of mental health care has grown in relative importance. This is in part due to substantial funding offered to the states by the Federal government. One consequence of this shift is that Medicaid program design has become very influential in shaping the delivery of mental health care. State mental health authorities, however, continue to be an important force in making public mental health services policy, working together with state Medicaid programs. Considerable administrative responsibility for mental health services has devolved to local mental health authorities in recent years (Shore & Cohen, 1994). Private insurance coverage has played a somewhat more limited role in mental health financing in the past decade. Various cost containment efforts have been pursued aggressively in the private sector through the introduction of managed care. There is also some emerging evidence on the imposition of new benefit limits on coverage for mental health services (HayGroup, 1998). At the same time private insurance coverage for prescription drugs has expanded dramatically over the past 15 years. In this area, insurance coverage for mental health treatments is on par with coverage for other illnesses. Accompanying this pattern of private insurance coverage are the availability of innovative new prescription drugs aimed at treating major mental illnesses and a shift in mental health spending in private insurance toward pharmaceutical agents. In summary, spending for mental health care has declined as a percentage of overall health spending over the past decade. Further, public payers have increased their share of total mental health spending. Some of the decline in resources for mental health relative to total health care may be due to reductions in inappropriate and wasteful hospitalizations and other improvements in efficiency. However. it also may reflect increasing reliance on other (non-mental health) public human services and increased barriers to service access. 417 Mental Health: A Report of the Surgeon General Financing and Managing Mental Health Care History of Financing and the Roots of Inequality Private health insurance is generally more restrictive in coverage of mental illness than in coverage for somatic illness. This was motivated by several concerns. Insurers feared that coverage of mental health services would result in high costs associated with long-term and intensive psychotherapy and extended hospital stays. They also were reluctant to pay for long-term, often custodial, hospital stays that were guaranteed by the public mental health system, the provider of "catastrophic care." These factors encouraged private insurers to limit coverage for mental health services (Frank et al., 1996). Some private insurers refused to cover mental illness treatment; others simply limited payment to acute care services. Those who did offer coverage chose to impose various financial restrictions, such as separate and lower annual and lifetime limits on care (per person and per episode of care), as well as separate (and higher) deductibles and copayments. As a result, individuals paid out-of-pocket for a higher proportion of mental health services than general health services and faced catastrophic financial losses (and/or transfer to the public sector) when the costs of their care exceeded the limits. Federal public financing mechanisms, such as Medicare and Medicaid, also imposed limitations on coverage, particularly for long-term care, of "nervous and mental disease" to avoid a complete shift in financial responsibility from state and local governments to the Federal government. Existence of the public sector as a guarantor of "catastrophic care" for the uninsured and underinsured allowed the private sector to avoid financial risk and focus on acute care of less impaired individuals, most of whom received health insurance benefits through their employer (Goldman et al., 1994). Goals for Mental Health Insurance Coverage The purpose of health insurance is to protect individuals from catastrophic financial loss. While the majority of individuals who use mental health services incur comparatively small expenses, some who have severe illness face financial ruin without the protection afforded by insurance. For people with health insurance. the range of covered benefits and the limits imposed on them ultimately determine where they will get service, which, in turn, affects their ability to access necessary and effective treatment'services. Adequate mental health treatment resources for large population groups require a wide range of services in a variety of settings, with sufficient flexibility to permit movement to the appropriate level of care. A 1996 review of the evidence for the efficacy of well-documented treatments (Frank et al., 1996) suggested that covered services should include the following: . Hospital and other 24-hour services (e.g., crisis residential services); . Intensive community services (e.g., partial hospitalization); . Ambulatory or outpatient services (e.g., focused forms of psychotherapy); o Medical management (e.g., monitoring psychotropic medications); o Case management: o Intensive psychosocial rehabilitation services; and o Other intensive outreach approaches to the care of individuals with severe disorders. Since resources to provide such services are finite, insurance plans are responsible for allocating resources to support treatment. Each type of insurance plan has a different model for matching treatment need with insurance support for receiving services. Patterns of Insurance Coverage for Mental Health Care Health insurance, whether funded through private or public sources, is one of the most important factors influencing access to health and mental health services. In 1996, approximately 63 percent of the U.S. population had private insurance, 13 percent had Medicare as a primary insurer (with about 7 percent 418 also having supplemental private insurance), 12 percent had Medicaid (2 percent had dual Medicaid/Medicare), and 16 percent were uninsured (Bureau of the Census, 1996) (Table 6-3.) Most Americans (84 percent) have some sort of insurance coverage-primarily private insurance obtained through the workplace. However, its adequacy for mental health care is extremely variable across types of plans and sponsors. Of the more than $32 billion spent for mental health services for people with private insurance, more than $18 billion came from that insurance, almost $12 billion came from client out-of- pocket payments, and more than $2 billion came from other private sources. For these more than 167 million people, the per capita expenditure was $193 per person per year (Table 6-4). . Slightly more than 13 percent of the U.S. population are entitled to Medicare, which includes mental health coverage. The nearly $10 billion spent for mental health coverage under Medicare for nearly 31 million people reflects an average per capita expenditure of $320 per year. Nearly 12 percent of U.S. adults (27 million low- income individuals on public support) receive Medicaid coverage (with more than 2 percent having dual Medicare/Medicaid coverage). With' per capita expenditures of $48 1 a year for mental health services, the average cost of this coverage is 2.5 times higher than that in the private sector. An explanation for this higher average cost is the severity of illness of this population and greater intensity of services needed to meet their needs. Finally, more than $12 billion (other than Medicaid funds) from state/local government and more than $1 billion from other Federal government block grant and Veterans Affairs funds contribute a total of almost $14 billion to cover mental health services for the unin- sured. Most (75 percent) of the uninsured are members of employed families who cannot afford to purchase insurance coverage. Individuals with severe and persistent mental illness who are uninsured have the highest annual costs, leaving few resources for treatment for those with less severe disorders (see Table 6-4). By applying the technique of Frank and Organizing and Financing Mental Health Services colleagues (1994) to 1996 funding patterns. it is estimated that public sector costs for seriously mentally ill patients receiving care in the public sector (about j. 1 million people or 1.9 percent of the population) are about $2,430 per year. As a result, although it is only a rough estimate, only about $40 per year per capita is available for those uninsured with less severe mental illness. State mental health policymakers have begun to blend funding streams from Medicaid and the state public mental health expenditures under Medicaid "waivers," which offer the potential of purchasing . private insurance for certain public beneficiaries who have not been eligible for Medicaid. This new option has recently been raised as a means of concentrating public mental health services on forensic and other long-term intensive care programs not covered by private insurance (Hogan, 1998). Given the extremely low level of funding for the uninsured with less severe mental illness, the recently implemented Federal legislation to fund a State Child Health Insurance Program (CHIP) could result in considerably increased coverage for previously uninsured children. It is noteworthy that CHIP benefits vary from state-to-state particularly for mental health coverage. Traditional Insurance and the Dynamics of Cost Containment From the time they were introduced in 1929 until the 199Os, fee-for-service (indemnity) plans, such as Blue Cross/Blue Shield, were the most common form of health insurance. Insurance plans would identify the range of services they considered effective for the treatment of all health conditions and then reimburse physicians, hospitals, and other health care providers for the usual and customary fees charged by independent practitioners. To prevent the overuse Of services, insurance companies would often require patients to pay for some portion of the costs out-of- pocket (i.e., co-insurance) and would use annual deductibles, much as auto insurance companies do. to minimize the administrative costs of processing small claims. 419 Mental Health: A Report of the Surgeon General For most health insurance plans covering somatic illness, to protect the insured. costs above a certain "catastrophic limit" would be borne entirely by the insurance company. To protect the insurer against potentially unlimited claims. however. "annual" or "lifetime limits"-often as high as $1 million-would be imposed for most medical or surgical conditions. It was expected that any expenses beyond that limit would become the responsibility of the patient's family. In contrast, in the case of coverage for mental health services, insurance companies often set lower annual or lifetime limits, for reasons discussed in the following paragraphs, to protect themselves against costly claims, leaving patients and their families exposed to much greater personal financial risks. The legacy of the public mental health system safety net as the provider of catastrophic coverage encouraged such practices. Further, when federal financing mechanisms such as Medicare and Medicaid were introduced, they also limited coverage of long-term care of "nervous and mental disease" to avoid shifting financial respon- sibility from state and local government to the Federal government. Economists have observed that for potential insurers of mental health care or general health care, two financial concerns are key: moral hazard and ad- verse selection. The terms are technical. but the concepts are basic. Moral hazard reflects a concern that if people with insurance no longer have to pay the full costs of their own care, they will use more services- services that they do not value at their full cost. To control moral hazard. insurers incorporate cost-sharing and care management into their policies. Adverse selection reflects a concern that. in a market with voluntary insurance or multiple insurers, plans that provide the most generous coverage will attract individuals with the greatest need for care, leading to elevated service use and costs for those insurers independent of their efficiency in services provision. To control adverse selection, insurers try to restrict mental health coverage to avoid enrolling people with higher mental health service needs. Both forces are at work in the insurance market. and they tend to be stronger for coverage of some mental health services than for some general health services. There is evidence of moral hazard, for example, from the RAND Health Insurance Experi- ment. which showed that increased use of insured services in response to decreased out-of-pocket costs for consumers (known as "demand response") is twice as great for outpatient mental health services (mostly psychotherapy) as for all ambulatory health services taken together (Manning et al., 1989). The RAND study did not include a sufficient number of individuals who used inpatient care or who were severely disabled to make a determination of the effect of changes in price on hospital care or on outpatient use by individuals with severe mental disorders. While these economic forces are important, insurer responses to them may have been exaggerated. In the fee-for-service insurance system, for example, some insurers have addressed their concerns about moral hazard by assigning higher cost-sharing to mental health services. Coverage limitations, imposed to control costs, have been applied unevenly, however, and without full consideration of their consequences. In particular, higher cost-sharing, such as placing a 50 percent copayment on outpatient psychotherapy, may reduce moral hazard and inappropriate use, but it may also reduce appropriate use. Limits on coverage may reduce adverse selection but leave people to bear catastrophic costs themselves. In addition, such measures do not address the issue of fairness in coverage policy. In particular, although similar levels of price response and presumed moral hazard occur in other areas of health care, mental health coverage is singled out for special cost-sharing arrangements. There may be a rationale for some level of differential cost-sharing, but such policies are fair only if the benefit design policies are applied to all services in which demand is highly responsive to price. Managed Care Managed care represents a confluence of several forces shaping the organization and financing of health care. These include the drive to deliver more highly individualized, cost-effective care; a more health- promoting and preventive orientation (often found in 320 health maintenance organizations, or HMOs); and a concern with cost containment to address the problem of moral hazard. Managed care implies a range of financing and payment strategies that depart in important ways from traditional fee-for-service indemnity insurance. Managed care strategies have resulted in dramatic savings in a wide range of settings over the past decade .(Bloom et al., 1998; Callahan et al., 1995; Christianson et al., 1995: Coulam & Smith, 1990; Goldman et al., 1998; Ma & McGuire, 1998). Major Types of Managed Care Plans Health mainfenance orgnnkzrions were the first form of managed care. Originally developed by the Kaiser Foundation to provide health services to company employees, these large group practices initiated con- tracts to provide all medical services on a prepaid, per capita basis. Medical staff members were originally salaried and not paid on a fee-for-service basis, as is the case in most other financing arrangements. However, in recent years, some HMOs have developed networks of physicians-so-called Independent Practice Associa- tions, or IPAs-who are paid on a fee-for-service basis and function under common management guidelines. Health maintenance organizations initially treated only those mental disorders that were responsive to short-term treatment. but they reduced copayments and deductibles for any brief therapy. There was an implicit reliance on the public mental health system for treatment of any chronic or severe mental disorder- especially those for whom catastrophic coverage was needed. Preferred Provider Organizations (PPOs) are managed care plans that contract with networks of providers to supply services. Providers are typically paid on a discounted fee-for-service basis. Enrollees are offered lower cost-sharing to use providers on the "preferred" list but can use non-network providers at a higher out-of-pocket cost. Point-of-Service (POS) plans are managed care plans that combine features of prepaid (or capitatedj and fee-for-service insurance. Enrollees can choose to use a network provider at the time of service. A significant copayment typically accompanies use of Organizing and Financing Mental Health Services non-network providers. Although few plans are purely of one type, an important difference between a PPO and a POS is that in a PPO plan, the patient may select any type of covered care from any in-network provider. while in a POS, use of in-network services must be approved by a primary care physician. In Carve-out Managed Behavioral Health Care, segments of insurance risk-defined by service or disease-are isolated from overall insurance risk and covered in a separate contract between the payer (insurer or employer) and the carve-out vendor. Even with highly restrictive admission criteria, many HMOs have recently found it cost effective to carve out mental health care for administration by a managed behavioral health company, rather than relying on in-house staff. This arrangement permits a larger range of services than can be provided by existing staff without increasing salaried staff and management overhead costs. Carve-outs generally have separate budgets, provider networks, and financial incentive arrange- ments. Covered services, utilization management tech- niques, financial risk, and other features vary de- pending on the particular carve-out contract. The employee as a plan member may be unaware of any such arrangement. These separate contracts delegate management of mental health care to specialized vendors known as managed behavioral health care orgnnizarions (MBHOs). There are two general forms of carve-outs: payer carve-outs and health plan subcontracts. In payer carve-outs, an enrollee chooses a health plan for coverage of health care with the exception of mental health and must enroll with a separate carve-out vendor for mental health care. Examples of payer carve-outs include the state employee health plans of Ohio and Massachusetts. In health plan subcontracts. adminis- trators of the general medical plan arrange to have mental health care managed by a carve-out vendor or MBHO; the plan member does not have to take steps to select mental health coverage. Examples of payer carve-outs include health plans associated with Prudential and Humana. 421 Mental Health: A Report of the Surgeon General The Ascent of Managed Care Over the past decade, the pace of change in U.S. health insurance has been striking. In 1988, insurance based on fee-for-service was the predominant method of fin- ancing health care. But in the ensuing decade, various management techniques were added such that insurance that used "unmanaged fee-for-service" as its payment mechanism plummeted from 71 percent to 15 percent (HayGroup, 1998). Managedcare arrangements (HMO, PPO, or POS plans), which fundamentally alter the way in which health care resources are allocated, now cover the majority (56 percent) of Americans (Levit & Lundy, 1998). During the 1988-1998 decade, PPO plans rose from being 13 percent to 34 percent of primary medical plans, with a similar rapid rise in HMO plans from 9 percent tb 24 percent. Point-of- service (POS) plans rose more slowly as the principal medical plan. from 12 percent in 1990 to 20 percent in 1998 (HayGroup, 1998). Managed care has also made significant inroads into publicly funded health care. Between 1988 and 1997, Medicaid enrollees in managed care rose from 9 percent to 48 percent, while Medicare enrollees in managed care increased from 5 percent to 14 percent. Most Medicaid and Medicare managed care growth has occurred since 1994. In Medicaid, growth is primarily focused on the population receiving Temporary Aid to Needy Families support (as opposed to the population with severe and chronic mental illness, eligible for Medicaid because of Supplemental Security Income- eligible disability) (HayGroup, 1998). In 1999, almost 177 million Americans with health insurance (72 percent) were enrolled in managed behavioral health organizations. This represents a 9 percent increase over enrollment in 1998 (OPEN MINDS, 1999). This administrative mechanism has changed the incentive structure for mental health professionals, with "supply-side" controls (e.g., provider incentives) replacing "demand-side" controls (e.g., benefit limits) on service use and cost. In addition, the privatization of service delivery is increasing in the public sector. As a result of these changes, access to specific types of mental health services is increasingly under the purview of managed behavioral care companies and employers. It is difficult to know precisely how many people are enrolled in various forms of carve-out plans. Recent reports estimate that 35 percent of employers with more than 5,000 employees have created payer carve-outs, while only 5 percent of firms with fewer than 500 employees have adopted them(Mercer/Foster-Higgins, 1997). A survey of 50 large HMOs revealed that roughly half of HMO enrollees were enrolled in carve- out plans (OPEN MINDS, 1999). The carve-out concept has also been adopted by'a number of state Medicaid programs. At most recent count, 15 states are using payer carve-out arrangements to manage mental health care (Substance Abuse and Mental Health Services Administration [SAMHSA], 1998). More than 20 states use carve-out arrangements to manage non- Medicaid public sector services. As the states have adopted Medicaid managed care for mental health, at least two distinct models have emerged. States that entered managed care early have tended to issue contracts to private sector organizations to perform both administrative (payments, network development) and management (utilization review) functions. States that entered managed care more recently have tended to contract administrative functions with Administrative Services Organizations (ASOs), while retaining control of management func- tions. Under any of these arrangements, financial risk for the provision of care to a particular population can be distributed in a variety of ways (Essock & Goldman, 1995). As the foregoing discussion indicates, mental health services associated with private insurance, public insurance, and public direct-service programs often have managed mental health care arrangements that are organized differently than are overall health services. These arrangements have emerged mostly within the past decade. The next section describes how the ascent of managed care has shifted patterns of resource allocation toward financial incentives aimed at providers, organizational structure, and adminis- trative mechanisms and away from the use of benefit design (e.g., using copayments and annual deductibles) 422 meant to encourage consumer cost-sharing. As a result, cost control and care management are accomplished through a more complicated set of policies than at any time in the recent past, and benefit design is no longer the only factor in determining service allocation or predicting costs to a health insurer. Dynamics of Cost Controls in Managed Care In a managed care system, the moral hazard of unnecessary utilization need not be addressed through benefit design. Utilization typically is controlled at the level of the provider of care, through a series of financial incentives and through direct management of the care. For example, managed care reduces cost in part by shifting treatmenl from inpatient to outpatient settings, negotiating discounted hospital and professional fees, and using utilization management techniques to limit unnecessary services. In this fashion, at least theoretically, unnecessary utilization, the moral hazard, is eliminated at the source, on a case- by-case basis. Adverse selection may be addressed through regulations, such as mandates in coverage that require all insurers in a market to offer the same level of services. In this way, no one insurer runs `the risk that offering superior coverage will necessarily attract people who are higher utilizers of care. Efforts to regulate adverse selection may not produce the intended effect, however, when insurers who offer the same services use management techniques to control costs by restricting care to those who use services most intensely-effectively denying care to those who most need it. In such instances, patients with the greatest needs might become concentrated in plans with the most generous management of care. This may lead to financial losses for such plans or encourage them to cut back on services for those who need care most or to divert resources from other beneficiaries. As managed care grows, the structure of the industry changes, with companies merging and disappearing. Managed behavioral health care organizations now cover approximately 177 million Americans. with only three companies controlling 57 percent of all insured persons (or 91 million covered Organizing and Financing Mental Health Services lives) (OPEN MINDS, 1999). However, the range of management controls currently applied to enrollees in covered plans extends from simple utilization review of hospitalizations on an administrative services only (ASO) contract to prepaid, at-risk contracts with exten- sive employee assistance plan (EAP) screening and networks of eligible mental health specialists and hospitals providing services for discounted fees. If and when mental health service benefits expand, it is possible for managed behavioral health plans to tighten the level of supply-side controls to maintain costs at a . desired level. Some consumers and consumer advocates have expressed concern that the management measures used to cut the costs of health care may also lower its quality and/or accessibility. Although this issue was addressed by the President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry and by current Patient Bill of Rights legislation, more research is needed to understand the effects of industry competition on costs, access, and quality. (See Appen- dix 6-A for Patient Bill of Rights.) Managed Care Effects on Mental Health Services Access and Quality Managed care demonstrably reduces the cost of mental health services (Ma & McGuire, 1998; Goldman et al.. 1998; Callahan et al., 1995; Bloom et al., 1998: Christianson et al., 1995; Coulam & Smith, 1990). That was one of its goals-to remove the excesses of overutilization, such as unnecessary hospitalization. and to increase the number of individuals treated by using more cost-effective care. This was to be accomplished through case-by-case "management" of care. The risk of cost-containment, however, is that it can lead to undertreatment. Research is just beginning on how managed care cost-reduction techniques affect access and quality. Excessively restrictive cost- containment strategies and financial incentives to providers and facilities to reduce specialty referrals. hospital admissions, or length or amount of treatment may ultimately contribute to lowered access and quality of care. These restrictions pose particular risk to People on either end of the severity spectrum: individuals with 423 Mental Health: A Report of the Surgeon General mental health problems may be denied services entirely, while the most severely and persistently ill patients may be undertreated. These risks must be seen, however, in the context of similar problems inherent in fee-for-service practice. Access and quality problems and the failure to treat those most in need predate managed care. Impact on Access to Services Despite considerable concern that managed care cost reductions may inappropriately restrict access to mental health services, the actual impact of these reductions has received relatively little systematic study. In addition, there are currently no benchmark standards for access to specialty merital health services.5 A system to measure access and track it over time is clearly needed. Establishing targets for treated prevalence6 is also problematic because the appropriate level and type of service utilization for specific population groups is only beginning to be documented (McFarland et al., 1998). The term "access to mental health services" refers generally to the ability to obtain treatment with appropriate professionals for mental disorders.`Having health insurance-and the nature of its coverage and administration-are critical determinants of such access. But so are factors such as the person's clinical status and personal and sociocultural factors affecting ' Between the early 1980s and 1990s-prior to the dominance of managed care-about 5.8 percent of U.S. adults used some type of specialty mental health outpatient services in any year. This rate now can be used as one reference point for assessing subsequent changes in access to mental health services, although there is no evidence on the appropriateness of this care. 6 Researchers and administrators often report access in terms of treated prevalence or penetration rates. These rates reflect the proportion of individuals in a given population (e.g., members of a particular managed behavioral health care plan) that use specialty mental health and/or substance abuse services in 1 year. ' This phrase has many additional dimensions and meanings to consumers. health care providers. and health services researchers. These include (a) waiting time for emergency, urgent, and routine initial and followup appointments; (b) telephone access, including call pick-up times and call abandonment rates; (c) access to a continuum of services, including treatment in the least restrictive setting: (d) access to providers from a full range of mental health disciplines: (e) choice of individual provider; (f) geographic access; and (g) access to culturally competent treatment. desire for care; knowledge about mental health services and the effectiveness of current treatments: the level of insurance copayments, deductibles, and limits; ability to obtain adequate time off from work and other responsibilities to obtain treatment; and the availability of providers in close proximity, as well as the availability of transportation and child care. In addition, because the stigma associated with mental disorders is still a barrier to seeking care. the availability of services organized in ways that reduce stigma-such as employee assistance programs-can provide important gateways to further treatment when necessary. A small number of studies provide a limited picture of access to managed behavioral health care. It has been found that the proportion of individuals receiving mental health treatment varies considerably across managed behavioral health plans (National Advisory Mental Health Council, 1998). Some long- term case studies of managed care's impact on access find that the probability of using mental health care- especially outpatient care-increases after managed behavioral health care is implemented in private insurance plans (Goldman et al., 1998). Impact on Quality of Care The quality of care within health systems has been assessed traditionally on three dimensions: (1) the strilcture of the health care organization or system; (2) the process of the delivery of health services; and (3) the outcomes of service for consumers (Donabedian, 1966). Many of these dimensions are being tapped in current efforts to assess-and, it is hoped, ultimately improve-the overall quality of mental health care in the United States. These include the use of accreditation practices, clinical- and systems-level practice guidelines, outcome measures and "report cards," and systems-level performance indicators. For example, to maximize the potential mental health benefit of patients' contact with the primary health care sector, which 70 to 80 percent of all Americans visit at least once a year, guidelines and treatment algorithms have been developed. The Agency for Health Care Policy and Research has developed comprehensive guidelines for the treatment of depression in primary 324 care settings (1993) as well as recommendations for the treatment of schizophrenia (Patient Outcome Research Team, Lehman & Steinwachs. 1998). Also funded by the Agency is the Depression PORT that will soon release findings on the quality and cost of the treatment of depression in managed, primary care practice (Wells et al., in press). In addition, multiple studies are now under way to develop better coordination between primary care physicians and mental health specialists for management of both chronic and acute mental disorders (Katon et al., 1997; Wells, 1999). These studies are described in more detail in Chapters 4 and 5. Current incentives both within and outside managed care generally do not encourage an emphasis on quality of care, Nonetheless, some managed mental health systems recognize the potential uses of quality assessment of their services. These include monitoring and assuring quality of care to public and private oversight organizations; developing programs to improve services or outcomes from systematic empirical evaluation; and permitting reward on the basis of quality and performance, not simply cost (Kane et al., 1994, 1995; Institute of Medicine, 1997; President's Advisory Commission on' Consumer Protection and Quality in the Health Care Industry. 1997). In the public sector, the Center for Mental Health Services (CMHS), in conjunction with the Mental Health Statistics Improvement Program, has developed a Consumer-Oriented Report Card. Designed to obtain a consumer perspective on access, appropriateness, prevention, and outcome, it is being tested in 40 states under CMHS grant support. Efforts are ongoing within managed behavioral health systems to develop quality-reporting systems based on existing administrative claims data, which measure aspects of the process of care as well as some clinical outcome data (American Managed Behavioral Healthcare Association, 1995; American College of Mental Health Administrators, 1997; National Committee for Quality Assurance, 1997). The first comparative study of quality indicators within the managed behavioral health care industry (Frank & Shore, 1996) has revealed very diverse Organizing and Financing Mental Health Services practices. For example, across the responding companies, expected outpatient followup visits within 30 days after hospital discharge for depression occurred among 92 percent of patients in one plan. but only 39 percent in another. One indicator of inadequate hospital treatment or discharge planning is rapid hospital readmission after discharge-an event that occurred in 2 percent to 4 1 percent of discharges. Another indicator of quality is the proportion of patients with schizophrenia who received a minimum of four medication visits per year; this figure ranged from 15 percent to 97 percent. Meas'ures of access (treated prevalence rates) also varied widely. Although methodological problems probably contribute to the variation among companies, these data raise concerns about real differences in quality among managed behavioral health care companies. They also underscore the need to improve quality measurement. In a more positive vein, investigators recently found that rates of readmission after hospital discharge were not adversely affected by the 1993 transition to a managed behavioral health carve-out for Massachusetts state employees. In fact, the proportion of cases receiving outpatient followup (within 15 or 30 days) actually increased for patients with major depressive disorder, despite substantial reductions in inpatient utilization and costs. However, because the study was based on the plan's administrative claims data, only limited conclusions could be made about the quality of care provided (Merrick, 1997). Clinical outcome data systems, although more expensive and complicated than administrative data systems, have much greater potential for evaluating how programs and practices actually affect patient outcomes. Several managed care companies are currently testing the feasibility of implementing systemwide collection of clinical outcome data, to be managed through newly developed comprehensive clinical quality information systems (Goldman. 1997: Goldman et al., 1998). Another way to measure quality takes into account outcomes outside the mental health specialty sector. Two recent studies suggest that when management and financial incentives limit access to mental health care 425 Mental Health: A Report of the Surgeon General or encourage a shift to general health care services for mental health care, disability may increase and work performance decline (Rosenheck et al., 1999; Salkever, 1998). These losses to employers may well offset management-based savings in mental health specialty costs. Findings such as these raise concern about the use of shortsighted cost-cutting measures that may contribute to less appropriate and less effective treatment, reduced work function, and no net economic benefits. Many of the administrative techniques used in managed care (such as case management, utilization review, and implementation of standardized criteria) have the potential to improve the quality of care by enhancing adherence to p?ofessional consensus treatment guidelines (Bemdt et al.. 1998) and possibly improving patient outcomes (Katon et al., 1997). However, little is known about what happens when management is introduced into service systems in combination with high cost-sharing (often the case with non-parity mental health benefits) (Bumam & Escarce, 1999). These combined limitations on services may seriously inhibit the provision of full and necessary treatment and lower the quality of care. The differential impact on service use on the basis of gender or other sociocultural factors is unknown. In summary, managed behavioral health plans differ considerably in their access and other aspects of quality in mental health care. Current practices often provide little incentive to improve quality. There is, however, some evidence that access and quality can be maintained or improved after managed care is introduced (Merrick, 1997). This is particularly important because some evidence suggests that limitations in mental health access affect people's well- being and result in decreases in work performance. increased absenteeism, and increased use of medical services (Rosenheck et al., 1999). Outcome assessments which focus on functional improvements are particularly important in the mental health area because of the ease with which management practices have been able to reduce treatment intensity and cost of mental health services. Toward Parity in Coverage of Mental Health Care "Parity" refers to the effort to treat mental health financing on the same basis as financing for general health services. In recent years advocates have repeatedly tried to expand mental health coverage-in the face of cost-containment policies that have been widespread since the 1980s. Parity legislation is an effort to address at once both the adverse selection problem and the fairness problem associated with moral hazard. The fundamental motivahon behind parity legislation is the desire to cover mental illness on the same basis as somatic illness, that is, to cover mental illness fairly. A parity mandate requires all insurers in a market to offer the same coverage, equivalent to the coverage for all other disorders. The potential ability of managed care to control costs (through utilization management of moral hazard) without limiting benefits makes a parity mandate more affordable than under a fee-for-service system. Managed care coupled with parity laws offers opportunities for focused cost control by eliminating moral hazard without unfairly restricting coverage through arbitrary limits or cost-sharing and by controlling adverse selection. However, continued use of unnecessary limits or overly aggressive management may lead to undertreatment or to restricted access to services and plans. Benefit Restrictions and Parity As noted above, mental health benefits are often restricted through greater limits on their use or by imposing greater cost-sharing than for other health services. Despite both the cost-controlling impact of managed care and advocacy to expand benefits, inequitable limits continue to be applied to mental health services. Parity legislation in the states and Federal government has attempted to redress this inequity. In 1997, the most common insurance restriction was an annual limit on inpatient days; annual or lifetime limits were used somewhat less. Higher cost- sharing was used by the smallest percentage, with the use of separate deductibles almost nonexistent on 326 inpatient mental health benefits. For outpatient mental health services, a quarter of the most prevalent plans had no special limitations (Buck et al., 1999). Unlike the situation for inpatient services, there was no marked preference for the use of any particular type of limitation for outpatient services. Mental health benefits are significantly restricted when special limitations are employed. Maximum lifetime limits for both inpatient and outpatient services were typically only $25,000. In some extreme cases, annual limits were only $5,000 for inpatient care and $2,000 for outpatient care. Day limits remained at the traditional limit of 30 inpatient days. However, the median limit on outpatient visits, traditionally 20, reached 25 in 1997 (Buck et al., 1999) Studies show that the gap in insurance coverage between mental health and other health services has been getting wider. One study found that the proportion of employees with coverage for mental health care increased from 1991 to 1994 (Jensen et al., 1998). However, more have multiple limits on their benefits, partly due to the increased use of managed care. Another study found that while health care costs per employee grew from 1989 to 1995, behavioral health care costs decreased, both absolutely and as a share of employers' total medical plan costs (Buck & Umland, 1997). A report by the HayGroup (1998) on changes in the health plans of medium and large employers provides more recent evidence for these trends. Between 1988 and 1997, the proportion of such plans with day limits on inpatient psychiatric care increased from 38 percent to 57 percent, whereas the proportion of plans with outpatient visit limits rose from 26 percent to 48 percent. On the basis of this and other information, the HayGroup estimated that the value of behavioral health care benefits within the surveyed plans decreased from 6.1 percent to 3.1 percent from 1988 to 1997 as a proportion of the value of the total health benefit (HayGroup, 1998). Extensive limits on mental health benefits can create major financial burdens for patients and their families. One economic study modeled the out-of- pocket burden that families face under existing mental Organizing and Financing Mental Health Services health coverage using different mental health expense scenarios (Zuvekas et al., 1998). For a family with mental health treatment expenses of $35,000 a year, the average out-of-pocket burden is $12,000; for those with $60,000 in mental health expenses a year, the burden averages $27,000. This is in stark contrast to the out-of- pocket expense of only $1,500 and $1,800, respect- ively, that a family would pay for medical/surgical treatment. legislative Trends Affecting Parity in Mental Health Insurance Coverage Federal legislative efforts to achieve parity in mental health insurance coverage date from the 1970s and have continued through to present times. However, a major parity initiative was included in the failed 1994 Health Security Act (the Clinton Administration's health care reform proposal). Although national health care reform stalled, the drive for mental health parity continued, culminating in passage of the Mental Health Parity Act in 1996. Implemented in 1998, this legislation focused on only one aspect of the inequities in mental health insurance coverage: "catastrophic" benefits. It prohibited the use of lifetime and annual limits on coverage that were different for mental and somatic illnesses. As Federal legislation, it included within its mandate some of the Nation's largest companies that are self-insured and otherwise exempted from state parity laws because of the Employment Retirement Income Security Act. Although it was seen as an important first substantive step and rhetorical victory for mental health advocacy, the Parity Act was limited in a number of important ways. Companies with fewer than 50 employees or which offered no mental health benefit were exempt from provisions of the law, The parity provisions did not apply to other forms of benefit limits, such as per episode limits on length of stay or visit limits, or copayments or deductibles, and they did not include substance abuse treatment. In addition, insurers who experienced more than a 1 percent rise in premium as a result of implementing parity could apply for an exemption. Despite these limitations, Federal parity legislation put mental health coverage concerns "on the 427 Mental Health: A Report of the Surgeon General map" for policymakers and demonstrated an unprecedented concern to redress inequities in coverage (Goldman, 1997). State efforts at parity legislation paralleled those at the Federal level. During the past decade, a growing number of states have implemented parity (Hennessy & Stephens, 1997; National Advisory Mental Health Council, 1998; SAMHSA, 1999). Some (e.g., Texas) target their parity legislation narrowly to include only people with severe mental disorders: others use a broader definition of mental illness for parity coverage (e.g., Maryland) and include, in some cases, substance abuse. Some states (e.g., Maryland) focus on a broad range of insured populations; others focus only on a single population (e.g., Texas state employees) (National Alliance for the Mentally Ill, 1999). Until recently, efforts to achieve parity in insurance coverage for the treatment of mental disorders were hampered by limited information on the effects of such mandates. This led to wide variations in estimates of the costs of implementing such laws. For example, past estimates of the increase in premium costs of full parity in proposed federal legislation have ranged from 3 percent to more than 10 percent (Sing et al., 1998). Recent analyses of the experience with state and Federal parity laws have begun to provide a firmer basis for such estimates. These studies indicate that implementing parity laws is not as expensive as some have suggested. Case studies of five states that had a parity law for at least a year revealed a small effect on premiums-at most a change of a few percent, plus or minus. Further, employers did not attempt to avoid the laws by becoming self-insured or by passing on costs to employees (Sing et al., 1998). Separate studies of laws in Texas, Maryland, and North Carolina have shown that costs actually declined after parity was introduced where legislation coincided with the introduction of managed care. In general, the number of users increased, with lower average expenditures per user. There is no evidence on the appropriateness of treatment delivered following the introduction of parity laws (National Advisory Mental Health Council. 1998). Similar findings come from case studies of private insurance plans that have provided generous mental health benefits (Goldman et al., 1998) and of plans that have switched to carve-out managed care (Ma & McGuire, 1998; Sturm et al., 1999). Some evidence also exists of the effects of the Federal Mental Health Parity Act, which went into effect in 1998. Under that law, group health plans providing mental health benefits may not impose a lower lifetime or annual dollar limit on mental health benefits than exists for medical/surgical benefits. A national survey of employers conducted after the Act went into effect found that while -mid- to large-size companies made some reductions in benefits and added cost-sharing, small companies (the majority of companies in the country) did not make compensatory changes to their benefits. This was because they judged that the projected costs were minimal or nonexistent (SAMHSA, 1999). Additional evidence that the law has resulted in minimal added expense comes from exemptions that may be granted if a plan experiences a cost increase of at least 1 percent because of the law. In the first year of the law's implementation, only a few plans nationwide had requested such an exemption (SAMHSA, 1999). In summary, evidence of the effects of parity laws shows that their costs are minimal. Introducing or increasing the level of managed care can significantly limit or even reduce the costs of implementing such laws. Within carve-out forms of managed care, research generally shows that parity results in less than a 1 percent increase in total health care costs. In plans that have not previously used managed care, introducing parity simultaneously with managed care can result in an actual reduction in such costs. Conclusions In the United States in the late 20th century, research- based capabilities to identify, treat, and, in some instances, prevent mental disorders are outpacing the capacities of the service system the Nation has in place to deliver mental health care to all who would benefit from it. Approximately 10 percent of children and adults receive mental health services from mental health specialists or general medical providers in a 428 Organizing and Financing Mental Health Services given year. Approximately one in six adults, and one in five children, obtain mental health services either from health care providers, the clergy, social service agencies, or schools in a given year. Chapter 6 discusses the organization and financing of mental health services. The chapter provides an overview of the current system of mental health services, describing where people get care and how they use services. The chapter then presents information on the costs of care and trends in spending. Only within recent decades, in the face of concerns about discriminatory policies in mental health financing, have the dynamics of insurance financing become a significant issue in the mental health field. In particular, policies that have emphasized cost containment have ushered in managed care. Intensive research currently is addressing both positive and adverse effects of managed care on access and quality, generating information that will guard against untoward consequences of aggressive cost-containment policies. Inequities in insurance coverage for mental health and general medical care-the product of decades of stigma and discrimination-have prompted efforts to correct them through legislation designed to produce financing changes and create parity. Parity calls, for equality between mental health and other health coverage. 1. Epidemiologic surveys indicate that one in five Americans has a mental disorder in any one year. 2. Fifteen percent of the adult population use some form of mental health service during the year. Eight percent have a mental disorder; 7 percent have a mental health problem. 3. Twenty-one percent of children ages 9 to 17 receive mental health services in a year. 4. The U.S. mental health service system is complex and connects many sectors (public-private, specialty-general health, health-social welfare, housing, criminal justice, and education). As a result, care may become organizationally fragmented, creating barriers to access. The system is also financed from many funding streams, adding to the complexity, given sometimes competing incentives between funding sources. 5. 6. 7. 8. 9. 10. 11. In 1996, the direct treatment of mental disorders. substance abuse, and Alzheimer's disease cost the Nation $99 billion; direct costs for mental disorders alone totaled $69 billion. In 1990. indirect costs for mental disorders alone totaled $79 billion. Historically, financial barriers to mental health services have been attributable to a variety of economic forces and concerns (e.g., market failure, adverse selection, moral hazard, and public provision). This has accounted for differential resource allocation rules for financing mental health services. a. "Parity" legislation has been a partial solution to this set of problems. b. Implementing parity has resulted in negligible cost increases where the care has been managed. In recent years, managed care has begun to introduce dramatic changes into the organization and financing of health and mental health services. Trends indicate that in some segments of the private sector per capita mental health expenditures have declined much faster than they have for other conditions. There is little direct evidence of problems with quality in well-implemented managed care programs. The risk for more impaired populations and children remains a serious concern. An array of quality monitoring and quality improvement mechanisms has been developed, although incentives for their full implementation have yet to emerge. In addition, competition on the basis of quality is only beginning in the managed care industry. There is increasing concern about consumer satisfaction and consumers' rights. A Consumers Bill of Bights has been developed and implemented in Federal Employee Health Benefit Plans, with broader legislation currently pending in the Congress. 429 Mental Health: A Report of the Surgeon General Appendix 6-A: Quality and Consumers' Rights The Federal government's concern with quality in the Nation's health care system was expressed in President Clinton's charge to the Advisory Commission on Consumer Protection and Quality in the Health Care Industry (March 26, 1997) "to recommend such measures as may be necessary to promote and assure health care quality and value and protect consumers and workers in the health care system." In November 1997 the Commission recommended a Consumer Bill of Rights and Responsibilities (President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry, 1997). The Consumer Bill of Rights and Responsibilities (Bill of Rights) is intended to meet three major goals: . Strengthen consumer confidence by assuring that the health care system is fair and responsive to consumers' needs; it gives consumers credible and effective mechanisms for addressing their concerns and encourages them to take an active role in improving and assuring their health. . Reaffirm the importance of a strong relationship between consumers and their health care professionals. . Underscore the critical role of consumers in safeguarding their own health by establishing both rights and responsibilities for all participants in improving health status. The Bill of Rights addresses a number of issues that are particularly relevant to mental health care: . Information disclosure of comparable measures of quality and consumer satisfaction from health plans, professionals, and facilities; . Direct access to specialists of choice for consumers with complex or serious medical conditions who require frequent specialty care; . Authorization, when required, for an adequate number of visits under an approved treatment p!an; . Vulnerable groups, including individuals with mental disabilities, require special attention by decisionmakers to protect their health coverage and quality of care; Confidentiality protections for sensitive services, such as mental health and substance abuse services, provided by health plans, providers, employers, and purchasers to safeguard against improper use or release of individually identifiable information. To move the mental health care system from a focus on providers to a focus on consumers, future care systems and quality tools will need to reflect person-centered values. 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Journal of Mental Health Policy and Economics, I. 135-146. 433 CHAPTER 7 CONFIDENTIALITY OF MENTAL HEALTH INFORMATION: ETHICAL, LEGAL, AND POLICY ISSUES Contents ChapterOverview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 438 Ethical Issues About Confidentiality . . . . , . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 438 Values Underlying Confidentiality ................................................. 439 Reducing Stigma.. .......................................................... 439 FosteringTrust ............................................................. 439 Protecting Privacy.. ......................................................... 439 Research on Confidentiality and Mental Health Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 440 Current State of Confidentiality Law ............................................... 441 Overview of State Confidentiality Laws ......................................... 44 1 Exceptions to Confidentiality .................................................. 442 Consent by the Person in Treatment ......................................... 442 Disclosure to the Client ................................................... 443 Disclosure to Other Providers .............................................. 443 DisclosuretoPayers ...................................................... 443 Disclosure of Information to Families ........................................ 444 Oversight and Public Health Reporting ....................................... 444 Research ............................................................... 444 Disclosure to Law Enforcement Agencies ..................................... 445 Disclosure to Protect Third Parties .......................................... 445 Contents, continued Federal Confidentiality Laws ...................................................... 446 Potential Problems With the Current Legal Framework ................................. 447 summary ..................................................................... 448 Conclusions ................................................................... 449 References .................................................................... 449 CHAPTER 7 CONFIDENTIALITY OF MENTAL HEALTH INFORMATION: ETHICAL, LEGAL, AND POLICY ISSUES Effective psychotherapy. . . depends upon an atmosphere of confidence and trust in which the patient is willing to make a frank and complete disclosure of facts, emotions, memories, and fears. Because of the sensitive nature of the problems for which individuals consult psychotherapists, disclosure of confidential communications made during counseling sessions may cause embarrassment or disgrace. For this reason, the mere possibility of disclosure may impede development of the confidential relationship necessary for successful treatment. T his ringing endorsement of the importance of confidentiality in the provision of mental health treatment comes from the U.S. Supreme Court (JafSee v. Redmond, 1996). The Court's language, in a decision creating a psychotherapist privilege in Federal court, appears to leave little doubt that there is'broad legal protection for the principle of confidentiality. Public opinion polls also show widespread support for the privacy of health care information: 8.5 percent of those responding to one survey characterized protecting the privacy of medical records as essential or very important (Peck, 1994). Yet the reality is much more complex. State and Federal laws do protect the confidentiality of health care information, including information created in providing mental health and substance abuse treatment. However, these laws have numerous exceptions, are inconsistent from state to state, and, in the opinion of many experts, provide less protection of confidentiality than is warranted. In addition, changes in the health care industry, and advances in technology, have created new concerns regarding the privacy of health care information. Health care increasingly is delivered and paid for by for-profit corporations with business in many states. This shift has several relevant consequences. First, individual health care information may be held and disseminated far beyond the office of the practitioner providing care. Second, cost containment concerns have resulted in the emergence of a variety of techniques that depend on third-party review of a practitioner's judgment that an individual should receive care, reviews that have resulted in increased demands for patient-specific information before care is approved. In addition. private health care information may be distributed for the purpose of marketing commercial products, such as pharmaceuticals, a growing business that many believe constitutes an improper use of such information (Jeffords, 1997; O'Harrow, 1998). Finally, private health information is used to create much larger databases, for various purposes including treatment and research, thereby increasing the number of people with access to such information. Technology also has emerged as a major issue in privacy debates. The ultimate impact of technology is not yet clear. One leading expert on the privacy of health care information asked whether technology would help or hinder the protection of health care 437 Mental Health: A Report of the Surgeon General privacy, responded that the answer was yes and no (Gellman. in press). On the one hand, new technologies can support, and in some cases make possible, the changes that have transformed the health care industry. The "health information technology industry" in 1997 sold approximately $15 billion of products to health care organizations, including medical business decision-support software;data warehousing, clinical expert systems, and electronic medical record systems designed to support large health care enterprises (Kleinke, 1998). There also have been ongoing efforts to create computer-based patient records for several years (Dick & Stean, 1991). Such records in many ways can be more secure than paper records through various mechanisms, for example, by restricting access to designated users. Yet much of the same technology raises concerns about privacy, because of its capacity to store and disseminate rapidly to multiple users personal information that many individuals would prefer remain private. If the myriad needs of the health care system could be met by using only data stripped of patient-specific information, many concerns about privacy might be ameliorated. However, data that identify the individual are still considered necessary for many purposes, including the administration of payment systems and fraud investigations. This'has led some to conclude that the ultimate question when patient-specific data are transported and used outside of the clinical context is security of the data (Moran, 1998). Congress, in an effort to respond to growing public concern over health care information privacy, has committed the Federal government to the creation of a national confidentiality standard by 2000. Congress also has directed the Secretary of Health and Human Services to produce recommendations for simplifying and standardizing requirements for the electronic transmission of health information (Health Insurance Portability and Accountability Act, 1996). The purpose is to improve the effectiveness and efficiency of the health care system (Gellman, 2000). It is not yet clear, given the complexities of the issues, that the deadline for a national privacy standard will be met. However, it is clear that the confidentiality of health care information has emerged as a core issue in recent years, as concerns regarding the accessibility of health care information and its uses have risen. Chapter Overview This section of the report discusses the values underlying confidentiality, its importance in individual decisions to seek mental health treatment, the legal framework governing confidentiality and potential problems with that framework, and policy issues that must be addressed by those concerned with the confidentiality of mental health apd substance abuse information. Although the current debate regarding Federal standards is not presented in great detail, it is referred to when appropriate to provide context for the broader discussion. Ethical Issues About Confidentiality Each profession that provides mental health treatment embraces confidentiality as a core ethical principle. For example, the Code of Ethics of the American Medical Association (AMA) states that "a physician . . . shall safeguard a patient's confidences within the restraints of the law" (American Medical Association [AMA], 1996). The AMA more recently has observed that "patients have a basic right to privacy of their medical information and records. . .patients' privacy should be honored unless waived by the patient in a meaningful way, or in rare instances of strongly countervailing public interest" (AMA, 1998). The Ethical Principles of Psychologists state that "psychologists have a primary obligation and take reasonable precautions to respect . . . confidentiality rights" (American Psychological Association, 1992). (See also, American Managed Behavioral Healthcare Association, 1998; American Psychiatric Association, 1998; National Alliance for the Mentally Ill, 1998). While the importance of confidentiality as an ethical principle is evident from these statements, it is also clear that confidentiality is not an absolute value. The AMA's 1996 statement qualifies the principle of confidentiality by observing that it is to be protected "within the restraints of the law." The American Psychological Association provides exceptions as well, 438 noting for example that disclosure of otherwise confidential information is permissible "where permitted by law for a valid purpose, such as. . .(3) to protect the patient or client from harm" (Ethical Principles of Psychologists and Code of Conduct, 5.05). As the discussion below suggests, the law creates many circumstances .in which confidentiality may or must be breached. At the same time, legal principles reflect broader values, and so there is often significant disagreement about the exceptions to confidentiality that the law permits or requires. It is also important to note at the outset that the right to confidentiality belongs to the person receiving services (Campbell, 2000). The ethical codes of the various professions, and most confidentiality laws, obligate professionals` to take steps to protect confidentiality. However, in general, the right to confidentiality belongs to the client; the right to waive confidentiality also is the client's, although there are situations in which the provider of treatment has no choice under the law but to disclose. Values Underlying Confidentiality The principle of confidentiality is designed to advance certain values. These include reducing the stigma and discrimination associated with seeking and receiving mental health treatment, fostering trust in the treatment relationship, ensuring individuals privacy in their health care decisions, and furthering individual autonomy in health care decisionmaking. Reducing Stigma There are certain illnesses that often evoke public unease and on occasion overt discrimination. For example, in the past, cancer was often not discussed; in fact. physicians often chose not to tell patients that they had diagnosed cancer. In recent years, individuals with AIDS have often faced discrimination. Mental illness has often fallen into this category as well. For years. the stigma and discrimination associated with mental illness were reinforced by laws that stripped people of their legal rights upon admission to a psychiatric hospital, and by social attitudes that often equated mental illness with potential violence. While many of Confidentiality of Mental Health Information the legal rules that reinforced discrimination have been removed, public attitudes regarding mental illness continue to vary. In an effort to reduce the risk of stigma and the discrimination that often results. confidentiality laws seek to protect both the fact that an individual has sought mental health treatment as well as the disclosures that are made during treatment. Fostering Trust Confidentiality generally is considered to be a cornerstone of a doctor-patient relationship (Dierks, 1993). Many psychotherapists assume that mental health treatment is most likely to be successful only if the client has a trusting relationship with the clinician (Sharkin, 1995). The Supreme Court language quoted at the beginning of this section reflects the same assumption. While the research findings on this subject are somewhat mixed (see discussion below), it is beyond dispute that many individuals in seeking treatment for mental illness reveal much of their private selves. It seems reasonable to assume that for many people, trust that their privacy will not be intruded upon beyond the confines of the clinical relationship is an important element in permitting unguarded exchanges during treatment. Concerns regarding confidentiality may cause individuals to take steps to protect themselves from unwanted disclosures in other ways that carry their own costs. For example, an individual may decide to pay for his or her own care, withhold certain types of sensitive information during treatment, or avoid seeking care. Protecting Privacy The law has given considerable attention in the last 3 decades to the idea that people have a right to privacy in making decisions regarding their health care. While the legal right to privacy has been discussed and applied most often in the context of decisions involvin,o procreation and decisions at the end of life, the general principle that the value of privacy is important to mental health treatment is not disputed. Competent individuals, or in the case of minor children, their parents or legal guardians, have a right to self-determination in deciding to seek or forego 439 Mental Health: A Report of the Surgeon General health care, including mental health or substance abuse treatment. There are exceptions, for example, the use of involuntary civil commitment or court-ordered treatment. However, the general trend has been to expand autonomy in health care decisionmaking. Two ethical and legal principles are important anchors to the principle of autonomy. The first, informed consent, assumes that the better informed an individual is, the better equipped he or she is to make health care decisions. The second, confidentiality, is considered to be particularly important in the context of mental health treatment. This is because of the assumption that an absence of confidentiality may make a person less likely to seek treatment. Research on Confidkntiality and Mental Health Treatment The values that underlie confidentiality in large part assume that people will be less likely to seek needed help (Corcoran & Winsalde, 1994) and, once in treatment, less likely to disclose sensitive information about themselves if they believe that the information may be disseminated outside the treatment relationship. Available research supports these assumptions. For example, in one study, individuals receiving psychotherapy placed a high value on the importance of confidentiality to the therapeutic relationship, as did a matched group of hospital employees (McGuire et al., 1985). Parents of children in psychotherapy reported that confidentiality was an important issue that needed to be discussed in the context of informed consent processes (Jensen et al., 1991). Another study suggests that concerns regarding stigma and confidentiality were factors in decisions by people with dual diagnoses (psychiatric illness and substance abuse disorder) to seek treatment from the community mental health system (Howland, 1995). Yet another study reports that the decision of therapists to seek or not seek treatment was influenced, among other things, by concerns regarding confidentiality (Norman & Rosvall, 1994). In the context of drug testing, the degree to which confidentiality was protected influenced the attitudes of those who had been ordered into drug testing regarding the seeking of employment (Sujak et al.. 1995). Subjects who were told that confidentiality was absolute reported that they were more willing to disclose information about themselves than individuals who were told that confidentiality was limited (Nowell & Spruill, 1993). Confidentiality, of course, is not absolute, and so the impact on individuals in treatment of various limits on confidentiality is an important question. This was explored in one of the few confidentiality studies to use as research subjects people actually in treatment (rather than students simulating the role of patient). Taube and Elwork (1990) found that patient self-disclosure was influenced in large measure by how informed the patient was about confidentiality law and by how consequential to the patient the legal limits on confidentiality were in his or her particular circumstances. Roback and Shelton (1995), noting that some studies suggested that perceived limitations on confidentiality did not deter patients from self-disclosing, also noted that as persons perceived themselves at risk for serious sociolegal consequences, being informed that certain disclosures would result in mandatory reporting did limit self-disclosing. Finally, one of the most recent studies of this subject, which used clients and college students as subjects for the research, concluded that subjects were less candid with a therapist if they understood that information regarding their treatment was to be disclosed to a third party for case utilization review (Kremer & Gesten, 1998). As a result, another observer concluded that "psychiatric treatment is often paid for by patients out-of-pocket, precisely to avoid creating a record over which a patient has little or no control" (Alpert, 1998, p. 89). Surveys of the general public also indicate that privacy of health care information is a major concern. For example, 27 percent of the respondents to a 1993 Harris survey believed that health care information about them had been improperly disclosed, 11 percent previously had decided to not file an insurance claim because of privacy concerns, and 7 percent had decided 440 to forego care because of concern that information that would be generated in care might harm their employment possibilities or other opportunities (Louis Harris & Associates, 1993). These findings suggest a dilemma for individuals who may wish to pursue treatment for mental illness and for treatment providers. All available data indicate that confidentiality of health care information is a significant concern for individuals. The evidence also indicates that people may become less willing to make disclosures during treatment if they know that information will be disseminated beyond the treatment relationship. At the same time, the caregiver is ethically obligated to disclose to the client the limits on confidentiality: A failure to reveal the limits of . confidentiality seriously threatens the therapeutic relationship and the provider's credibility. As a result, treatment may be compromised, and the patient may terminate treatment prematurely (Kremer & Gesten, 1998). In short, available research supports the conclusion that strong confidentiality laws are critical in creating assurances for individuals seeking mental health treatment and thereby increasing willingness to participate in treatment to the degree necessary to achieve successful outcomes. However, the present legal framework does not provide strong, consistent protection of confidentiality in many instances. It is important to note that additional factors may contribute to concern that confidentiality may be breached and, in turn, an unwillingness on the part of consumers to disclose or share information. In many instances, these factors cannot be addressed through stronger legal protections alone. In given clinical settings, for example, concern may stem from the existence of crowded or open facilities, frequent changes in clinical staff, language differences, cultural considerations, and other constraints that would limit establishing a trusting therapeutic relationship. In addition, individuals may not wish to disclose information regarding "pre-existing conditions" for fear it may result in a loss of insurance coverage as well as privacy. Confidentiality of Mental Health Information Current State of Confidentiality Law One expert has described the current law goveming the confidentiality of health care information as a "crazy quilt of Federal and state constitutional, statutory, regulatory and case law" that "erodes personal privacy and forms a serious barrier to administrative simplification" (Waller, 1995, p. 44). This aptly describes the current legal framework for the confidentiality of mental health and substance abuse information as well. There is at present no national standard for the confidentiality of health care mformation in general or mental health information in particular. Rather, each state has laws that establish confidentiality rules and exceptions. In response to a serious public policy concern that the criminal justice ramifications of use of illegal substances would significantly deter individuals from seeking substance abuse treatment, a national standard governing the confidentiality of substance abuse treatment information was codified. However. there often are significant differences among states and between the state and Federal requirements, which can create problems for the administrators of health care plans and for those providing treatment for people with co-occurring mental illness and substance abuse disorders. Overview of State Confidentiality Laws As noted, nearly all states have discrete statutes addressing the confidentiality of mental health records and information. In a handful of states, a general law applicable to all health care information applies. In some states, the mental health confidentiality statute applies only to information gathered when a state facility provides treatment; in others, it applies to mental health treatment regardless of the auspice of care. One common criticism of health care information laws generally is that they apply primarily to information gathered in the course of treatment and in the possession of the caregiver. This means that different standards apply to the distribution of information held by others not party to the treatment relationship. This observation fairly characterizes most 441 Mental Health: A Report of the Surgeon General state mental health laws as well. The focus of the laws tends to be upon the clinical relationship, and often what happens to information once it is disseminated beyond the clinical relationship is unaddressed. Many of the reform proposals advanced in recent years would apply confidentiality rules to other parties that come into possession of protected information, although the proposals vary regarding application of a national standard to employers, schools, correctional facilities, and other settings in which a significant volume of health care is provided. In addition, the proposals vary regarding the question of whether the individual has a legal right to consent to disclosures beyond the clinical relationship: How this question is resolved will determine in large measure whether individuals in the role of patient believe that confidentiality protections are strong enough to warrant seeking treatment. While the various reform proposals differ in detail, few dispute the need to extend the obligation to protect confidentiality to other parties. In the early 1980s one expert found that between 25 and 100 people had access to an individual inpatient record (Siegler, 1982), a number that has grown in recent years. In addition, as health care delivery and payment have . become increasingly complex and as provider networks rather than individual practitioners increasingly provide care, the number of people who may come into possession of health care information continues to expand. One observer describes three "zones" of users of personal health care information. "Zone one" users are involved in direct patient care, while "zone two" users are involved in support and administrative activities like payment and quality of care reviews. "Zone three" users include public health agencies, social welfare agencies, researchers, and direct marketing firms (Westin, 1993). Some of these parties traditionally have had ready access to health care information; others, for example, utilization review managers and direct marketing firms, are comparatively new to health care. Whether a party that has access to information should have access to that information is a separate question that lies at the heart of much of the debate about confidentiality. Exceptions to Confidentiality Each state law creates exceptions to confidentiality. While state laws vary regarding the number and type of exceptions permitted, the most common exceptions to confidentiality are discussed briefly below. As a prefatory note, many experts assume that client consent presumptively should be required prior to most if not all disclosures, and that any waiver of confidentiality by the client must be truly informed (Campbell, 2000). However, as the discussion below suggests, many state laws permit a variety of disclosures without client consent, raising questions regarding the adequacy of these laws in protecting client confidentiality in the current environment. Consent by the Person in Treatment The most common exception to confidentiality is when the person who is or has been in treatment consents to the waiver of confidentiality. (For minor children, this right rests with the parents or legal guardians.) For example, the practitioner may ask that the person sign a consent form authorizing the release to the practitioner of other health care records. This reflects the fact that the right to confidentiality is designed primarily to protect the patient, not other parties, from unwanted disclosures, and that the right to waive confidentiality presumptively rests with the patient. In some instances, where confidentiality is waived, the patient nonetheless may wish to avoid release of certain information in any circumstances and direct that the provider not include in the file sensitive personal information-for example, sexual orientation or marital infidelities. Although each state provides for waiver of confidentiality by the person in treatment, few states spell out in statute the elements of a valid consent. This is in contrast to the Federal laws on substance and alcohol treatment information, discussed below, which provide explicit details regarding the content of a valid consent. In addition, the various reform proposals that have been introduced in Congress and elsewhere each contain criteria for consent. These typically include requirements that consent be in writing, name the individual or entity to which disclosure of information is to be made, identify the purpose or need for disclosure and the type of information to be disclosed, and state the period for which the consent is effective. However, it should be noted that the proposals differ on the question of the degree to which a person's consent to disclosure would be truly voluntary. Many of the proposals suggest that a person's treatment, or reimbursement for treatment, may depend on whether the person consents to have his or her records disclosed. This may raise questions about how *`voluntary" such consent is, in fact, given that access to the services sought may be contingent upon agreeing to the release of information divulged during treatment. Disclosure to the Client Many, though not all, state laws provide that individuals have a right of access to health care records containing information about them. Some provide that a clinician may restrict access to the record, if in the clinician's judgment, access would cause harm to the client. Some statutes also provide that a clinician may restrict access to particular parts of the record if access might harm the client or if third parties provided information with the expectation that it would be held in confidence. Some experts have suggested that limiting client access undercuts the principle that information contained in the record belongs first to the client (Campbell, 2000). Each reform proposal articulated to date provides for access by an individual to health care information. These proposals assume that access is necessary both so that the individual is fully informed regarding his or her health care and so that the individual can correct information that might be erroneous. Generally, for minor children, parents have the right of access. Some experts have suggested that in the case of children, even in instances in which the parents or guardians control the information, there should be a right for the child to establish a "zone of privacy" for certain "intimate" information. Such information could not be accessed by responsible adults except when the clinician determines that it indicates imminent danger of harm to self or others (Melton, 2000). Confidentiality of Mental Health Information Disclosure to Other Providers An important question in an era in which networks of providers provide increasing amounts of care is whether and how confidentiality laws permit disclosure to other caregivers. The majority of states that address this issue typically provide for disclosure to others involved in providing care. Some states require consent before information can be disclosed, although the majority of state laws that address the issue do not. Few states address the question of information exchange within a network of providers. Some proposals before Congress would permit disclosure of information to other care providers without requiring consent. Others would require consent prior to any disclosure. At least one presumptively would permit disclosure, but give the individual the opportunity to "opt out" of a particular disclosure. As noted earlier, conditioning access to treatment (or to reimbursement) on a waiver of confidentiality calls into question the voluntariness of the waiver. Disclosure to Payers Many states have provisions in their mental health confidentiality laws that permit disclosure of otherwise confidential information as necessary to obtain reimbursement or other financial assistance for the person in treatment. Most of these statutes were written before the emergence of managed care and third-party utilization review. Therefore, most state laws that create this exception to confidentiality impose few if any limitations on the type or amount of information that can be disclosed to obtain reimbursement, and most do not explicitly require consent prior to disclosure. There are exceptions that might prove useful models to other jurisdictions. For example, New Jersey restricts disclosure of information from licensed psychologists to third-party payers. The statute permits disclosure only if the client consents, and if disclosure is limited to: ( 1) administrative information; (2) diagnostic information: (3) the legal status of the patient; (4) the reason for continuing psychological services; (5) assessment of the client's current level of functioning and level of distress: and (6) a prognosis, limited to the minimal time treatment might continue (New Jersey Statutes). The 443 Mental Health: A Report of the Surgeon General Commonwealth of Massachusetts also limits disclosures to third-party payers of mental health information (Massachusetts Annotated Laws). As noted, the proposals that have been made to date to create a national standard for the confidentiality of health care information differ in how they treat disclosures to other providers and payers. Some proposals would require patient consent prior to any disclosure. Others would presume consent. Still others would permit the individual to "opt out" of specific disclosures. The last would require that individuals be given the names of providers and payers that might be provided access to information; the individual could then decline permission to provide information to specific payers or providers. The question of how much information should be made available to third-party reviewers is a contentious one. As the research described earlier suggests, the willingness to self-disclose, or to participate in treatment, appears to be contingent at least in part on the strength of confidentiality provisions. As the amount and sensitivity of information made available to third- party reviewers increases, a corresponding decrease on the part of some individuals to seek treatment is likely. Disclosure of Information to Families An issue of some controversy in mental health is wheth- er families should be provided information regarding their adult child in certain circumstances. As a general rule, access to information in circumstances involving minor children is provided to parents or the legal guardian of the child, until the child attains the age of majority or an age at which the child is permitted under state law to make his or her own treatment decisions. Some states provide that parents acting in the role of caregiver may be given information, usually limited to diagnosis, prognosis, and information regarding treatment, specifically medications. Of those states with these or similar provisions, some permit the disclosure of this information without the consent of the individual, while others require consent, with some providing for administrative review if consent is not given. All of the reform proposals that have been introduced before Congress provide for the disclosure of limited information regarding an individual's current health status to family or next of km. Consent generally is not required, although most provide the patient with the opportunity to request that information not be provided in such circumstances. It should be noted that in the context of mental health treatment, there is disagreement regarding this issue, particularly on the issue of prior consent. Family advocates often take the position that a family in a caregiving role should have access to some types of information whether or not the individual specifically has consented to the disclosure, because it is necessary to play a caregiving- role (Lefly, 2000). Advocates for consumer-recipients often argue that consent should be required, because the right to confidentiality belongs to the recipient of services, and because there may be intrafamily conflicts that could be exacerbated by the release of information to family members. Oversight and Public Health Reporting All states have provisions that allow entities with oversight responsibilities to have access to medical records without client consent. Similarly, states mandate that certain types of information be made available to public health officials for various public health purposes, for example, the reporting of infectious diseases or the prescription of particular types of medication. The various reform proposals would do little to change this type of reporting, although at least one would create a preference for the use of records in which personal identifying information has been deleted. Research The confidentiality of individually identifiable information gathered in the course of conducting research can be protected from compelled disclosure by obtaining federally issued "certificates of confiden- tiality." These certificates are issued through the Depart- ment of Health and Human Services upon application by the researcher for research which involves the collection of specific types of sensitive information judged necessary to achieve the research objectives. The importance of the protection against disclosure afforded by Federal "certificates of confidentiality" increases as 444 research expands its traditional boundaries to include genetic information of uncertain/evolving clinical relevance. An individual may voluntarily consent to the disclosure of information obtained in the course of protected research. In addition, the researcher may identify certain specific information which may be voluntarily disclosed in participants' consent forms. States that address access to confidential information for research purposes generally provide for access without consent if it is impracticable to obtain individual consent and the research has been approved by the agency with approval authority under the state law. It should be noted that regardless of the aforementioned protections, information obtained in protected research studies, which finds its way into the participant's regular medical chart, is not covered. Disclosure to Law Enforcement Agencies Many state laws limit access to information regarding people with mental illness by law enforcement officials to situations in which an individual who has been hospitalized has left the hospital and not returned, or to situations in which a crime has been committed on the grounds of a treatment facility. A handful of state laws provides access for the purpose of investigating health care fraud. In contrast, most of the reform proposals designed to create a national standard provide comparatively broad access by law enforcement officials. Others would limit discovery to situations in which law enforcement could demonstrate, usually by clear and convincing evidence, that disclosure is necessary. This is a controversial issue. Some professional and advocacy groups believe that broad access by law enforcement officials will lead to unwarranted invasions of privacy and encourage "fishing expeditions" in which material revealed during treatment becomes the basis of criminal prosecution. On the other hand, some have argued that broad access is necessary, particularly to investigate health care fraud in which the conduct of the provider rather than the client is at issue. The current Federal substance abuse laws provide for a stricter standard for access to information by law enforcement officials than is provided for in many of the proposals Confidentiality of Mental Health Information before Congress. This strict standard is based on the assumption that broader access would have a negative effect on the willingness of people to seek substance abuse treatment, if seeking treatment might lead to criminal prosecution. While these provisions seem to have met their intended goal of encouraging individuals to seek treatment, there is no evidence that stricter Federal standards for access to substance abuse information have impeded law enforcement efforts. Disclosure to Protect Third Parties In 1976, the California Supreme Court ruled that a mental health professional has an obligation to take steps to protect identified third parties whom the professional reasonably believes might be endangered by a client (Tarasoff v. Regents, 1976). This decision was criticized by a number of groups, including the American Psychiatric Association and the American Psychological Association, on the grounds that it required mental health professionals to perform a task for which they were ill-suited (that is, assess future risk) and that it would compromise confidentiality. Since the court's decision, many states, either through statute or judicial decision, have addressed this topic. The majority of states that have done so through statute provide that a mental health professional who concludes that his or her client represents an imminent danger to an identified third party may take steps, including notifying the individual or law enforcement officials, to protect the third party without becoming liable for a breach of confidentiality. These states also typically provide that the clinician will not be liable if he or she decides not to act-rather, the statutes give the clinician discretion in deciding how to proceed. In addition, all states permit or mandate disclosure in other situations where a third party might be at risk for harm. Child abuse and elder abuse reporting laws are examples. Most of the proposals to create a national standard permit disclosures necessary to protect an identifiable third party when the caregiver concludes that there is a risk of serious injury or death, or when disclosure is necessary to protect the patient from serious harm. 445 Mental Health: A Report of the Surgeon General Federal Confidentiality Laws An individual who seeks treatment for mental illness runs the risk of discrimination and invasion of privacy if information disclosed during treatment becomes known to third parties. An individual who seeks treatment for a substance use problem may reveal information that if disclosed could become the basis for criminal prosecution. The prospect of prosecution as a price of entering treatment quite clearly may create disincentives to seek treatment. In an effort to create incentives for people with substance use and alcohol problems to seek treatment, Congress enacted perhaps the strictest confidentiality law extant. As a result, Federal law governs the confidentiality of information, obtained by federally assisted, specialized substance abuse treatment pro- grams, which would identify a patient as receiving treat- ment services (42 USC. 290dd-2; 42 C.F.R. 2.1, et seq.). Disclosure of patient identifying information by federally assisted programs is permitted only in explicitly delineated circumstances. The person receiving services can waive confidentiality, but consent must be written; name the client, the program making the disclosure, and the intended recipient of the information; state the purpose of the disclosure and the information to be disclosed; be signed by the client or representative of the patient where appropriate; and state the duration of the consent and conditions under which it expires. In the absence of consent, disclosures may be made only in the circumstances permitted by the regulations. For example, information may be exchanged within the program providing services, but only to the extent necessary to provide services. In other words, information is to be exchanged even within the treatment program on a "need to know" basis. Disclosures may be made without consent to other service providers if providers have entered into a "qualified service agreement" with the treating program. This is to permit the treating program to obtain collateral services, for example, blood work, that are not performed by the program itself. Disclosures to other providers not part of a qualified service agreement can only occur with consent. Disclosure also is permitted to law enforcement officials when there was a crime commuted on the premises or against the personnel of the treatment program. Even in this case, information provided is to be limited initially to the name, address, and last known whereabouts of the individual who committed or threatened to commit a crime. Other circumstances in which disclosures are permitted without consent include medical emergencies as defined in the regulations; child abuse reports; court orders, when the court has followed procedures established in the regulations; and incriminal investigations of "extremely se&us crimes" as defined in the regulations (Center for Substance Abuse Treatment, 1994). The statute and regulations do not address, and therefore do not permit, disclosures to families of clients or to payers without consent of the client. The Federal law is generally much more detailed than any state mental health law in delineating the conditions that must be met before disclosures can occur. In addition, as this brief summary suggests, state mental health laws and the Federal alcohol and substance abuse laws differ substantively in many respects. This may create difficulties for providers caring for people with co-occurring mental illness and substance use disorders, because the provider may be operating under two quite different legal standards in considering requests for information regarding the same individual. This issue is discussed in more detail below. Other Federal statutes have limited applicability to the confidentiality of health care information. The Privacy Act of 1974 prohibits disclosure of an individual's record without prior written consent and provides access to review, copy, and correct records. However, the Act applies only to federally operated hospitals and to research or health care institutions operated pursuant to Federal contracts, so it does not cover the vast majority of organizations and entities collecting health care information (Gostin, 1995). In addition, disclosure of personally identifiable information is permitted if necessary for the "routine use" of the receiving facility, a very broad exception. Finally, the Americans With Disabilities Act (ADA) of 1990 requires employers to maintain medical 446 information in separate files and on discrete forms. As the ADA is enforced, it may lead to increased protection of the privacy of medical records at the workplace. In relevant part, however, the ADA applies only to people with a disability as defined by the statute, and to actions taken by employers based on an individual's disability. Therefore, the ADA provides only limited confidential- ity protection; it does not create a general right to medical privacy within the workplace. Potential Problems With the Current Legal Framework There is general consensus that the current legal framework for protecting the confidentiality of health care information is inadequate. There are significant differences among the states in addressing confidentiality issues. While a state-by-state approach may have been good policy before recent trends in the organization and financing of health care, the increasing dominance of the health care industry by providers and payers doing business on a national scale has caused many to advocate for a national confidentiality standard. This lack of uniformity may be exacerbated in the context of mental health care. There are differences in standards not only among the states, but between the states and the Federal government. Separate state standards for mental health information and Federal standards for alcohol and substance use information may be problematic in an era in which it has become evident that many people with mental illnesses also have substance abuse or alcohol problems. In addition, there are often within the same state a number of statutory provisions that address the confidentiality of mental health information. These may include the state mental health law (which may apply to all mental health information or only information held by state-operated providers), judicial privilege statutes, laws applicable to licensed professionals, and various state oversight laws. This may make it difficult even within a particular state to articulate the state law on the confidentiality of mental health information. Many state mental health laws also lack provisions that most reform proposals contain. For example. many states do not articulate standards for client consent to Confidentiality of Mental Health Information disclosure. In contrast, most reform proposals require that consent be in writing, be of definite rather than indefinite duration, and specify recipients of information rather than provide open-ended consent to disclose. Many state laws providing for disclosure of mental health information to payers without client consent were written before the increased demands for information common today. Access by other providers is variable as well. Many states provide for comparatively mild penalties for the breach of confidentiality. In contrast. most reform proposals would considerably strengthen penalties for violating confidentiality protections. As the debate regarding a national standard proceeds, there are two additional issues of consequence for those considering the confidentiality of mental health information. The first is the question of preemption. Most reform proposals considered by Congress in recent years would establish a national standard that would become the minimum standard for health care information. The standard would preempt (or supercede) any state laws that provided less protection than that in the national standard. The Secretary of the Department of Health and Human Services recommended such an approach in a recent report to Congress entitled, ConJidentiality of Individually Identifiable Health Information. Should a national standard be enacted, determining whether a state's mental health law provides more or less protection than a national standard may be difficult in at least some cases. For example, in one state, the law permits disclosures without consent to some but not all types of providers. One of the proposals to establish a national standard would permit disclosures to be made to other providers without the consent of the individual, but would give the individual the opportunity to "opt out" of disclosures to specified providers. In this example, it is difficult to determine whether the state law in question is more or less protective than the proposed national standard. On the one hand, the state law in this example is more restrictive than the reform proposal because it limits the types of providers that can receive information without consent. On the other hand, it is weaker than the reform proposal because it does not provide the individual with an opportunity to decline permission to disclose to those providers. The problem 4-47 Mental Health: A Report of the Surgeon General is not insurmountable: in this example, one solution might be to apply the opt-out provision of the national standard to that part of the state law that permits some types of disclosures without consent. At the same time, the current condition of many state mental health laws may make application of the preemption principle difficult. A second important question is whether there should continue to be separate legal standards for mental health confidentiality and for substance use and alcohol use confidentiality. The reform proposals advanced to date generally would leave the Federal substance use law intact. This would have the practical effect of locking in the disparate standards that currently exist for mental health information (governed by state laws) and substance and alcohol use information (governed by the Federal law). Some experts disagree with the notion of having discrete, disease-based standards, on the ground that there are other diseases that raise legitimate concerns regarding privacy that do not receive special protection (Gostin, 1995). Others would retain the strict protections currently available to substance and alcohol use data, while extending the same protections to mental health information. This report does not endorse either perspective. However, it would be useful to examine more closely whether disparate standards have an effect on clinical practice and on the privacy expectations of individuals in treatment, particularly those with both a mental illness and a substance abuse diagnosis. Summary There are many reasons why an individual with a mental illness might decide not to seek treatment. For example, some people might forego treatment for financial reasons. Others might decide that the risk of stigma and discrimination that people with mental illness still encounter is too high a price to bear. In the latter situation, being able to provide assurances that the principle of confidentiality receives strong protection may make the difference in the decision to enter and participate fully in treatment. Confidentiality is a matter of both ethical and legal concern. As noted earlier, each of the health care Professions endorses confidentiality as a core matter. However, it is the law that establishes the basic rules that govern confidentiality in practice. The law can expand confidentiality, as the U.S. Supreme Court did when it ruled that a psychotherapeutic privilege would apply in Federal court. The law also can decide that the principle of confidentiality must yield to other values, as the California Supreme Court did when it decided that mental health professionals had an obligation to protect third parties whom the professional reasonably concluded could be endangered by a client in treatment. It is clear that confidentiality is not absolute. There are other competing values that require its breach in certain circumstances. However, it also seems clear that there are significant gaps in the current legal framework that protects the confidentiality of mental health information. Consideration of an appropriate level of legal protection for mental health information should acknowledge that mental illness continues to be a category of illness that may subject a person receiving a diagnosis to discrimination and other disadvantages. In the absence of strong confidentiality protections, some individuals with mental illness may decide that the benefit of treatment is outweighed by the risk of public disclosure. This would be harmful not only to the individual, but to a public that has a stake in the mental health of its members. The U.S. Supreme Court summarized this public interest succinctly in the decision quoted at the beginning of this section: The psychotherapist privilege serves the public interest by facilitating the provision of appropriate treatment for individuals suffering the effects of a mental or emotional problem. The mental health of our citizenry, no less than its physical health, is a public good of transcendent importance. (Jaffee v. Redmond, 1996) It is to be hoped that this public good, as well as the private good represented by successful treatment for mental illness, governs the continuing debate regarding the protection of confidentiality. 448 Conclusions In an era in which the confidentiality of all health care information, its accessibility, and its uses are of concern to all Americans, privacy issues are particularly keenly felt in the mental health field. An assurance of confidentiality is understandably critical in individual decisions to seek mental health treatment. Although an extensive legal framework governs confidentiality of consumer-provider interactions, potential problems exist and loom ever larger. 1. 2. 3. 4. 5. 6. 7. People's willingness to seek help is contingent on their confidence that personal revelations of mental distress will not be disclosed without their consent. The U.S. Supreme Court recently has upheld the right to the privacy of these records and the therapist-client relationship. Although confidentiality issues are common to health care in general, there are special concerns for mental health care and mental health care records because of the extremely personal nature of the material shared in treatment. State and Federal laws protect the confidentiality of health care information but are often incomplete because of numerous exceptions which often vary from state to state. Several states have, implemented or proposed models for protecting privacy that may serve as a guide to others. States, consumers, and family advocates take differing positions on disclosure of mental health information without consent to family caregivers. In states that allow such disclosure, information provided is usually limited to diagnosis, prognosis, and information regarding treatment, specifically medication. When conducting mental health research, it is in the interest of both the researcher and the individual participant to address informed consent and to obtain certificates of confidentiality before proceeding. Federal regulations require informed consent for research being conducted with Federal funds. New approaches to managing care and information technology threaten to further erode the confidentiality and trust deemed so essential Confidentiality of Mental Health Information between the direct provider of mental health services and the individual receiving those services. It is important to monitor advances so that confidentiality of records is enhanced, instead of impinged upon, by technology. 8. Until the stigma associated with mental illnesses is addressed, confidentiality of mental health information will continue to be a critical point of concern for payers, providers, and consumers. References Alpert, S. (1998). 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Medicine & Ln\c,, 12,547-551. 449 Mental Health: A Report of the Surgeon General Freedom of Information Act, 5 U.S.C. 5 552 (b), (1974). Gellman, R. (2000). Will technology help or hurt in the snuggle for health privacy? In J. Gates & B. Arons (Eds.), Privacy and confidentiality in mental health care (pp. 127-156). Baltimore: Brookes Publishing. Gostin. L. (1995). Health information privacy. Comeff Latv Review, 80,45 l-528. Health Insurance Portability and Accountability Act, Pub. L. No. 104-191.llOStat. 1936(1996)[On-line].Available: http://www.hcfa.gov.regs/hipaacer.htm Howland. R. (1995). The treatment of persons with dual diagnoses in a rural community. Psychiatric Quarterly, 66, 33-49. Jaffee v. Redmond, 5 18 U.S. 1 (1996). Jeffords, J. Statement of Senator James Jefford. Hearing on the confidentiality of medical information. Senate Committee on Labor and Human Resources, 105th Cong. (1997). Jensen, J. A., McNamara, J. R., & Gustafson, K. E. ( 1991). Parents' and clinicians' attitudes toward the risks and benefits of child psychotherapy: A study of informed- consent content. Professional Psychology, Research and Practice, 22, 16 I-l 70. Kleinke. J. D. (1998). Release 0.0: Clinical information technology in the real world. Health Affairs (Millwood), I7,23-38. Kremer, T. G., & Gesten, E. L. (1998). Confidentiality limits of managed care and clients' willingness to disclose. Professional Psychology, Research and Practice, 29, 553-558. Lefly, H. P. (2000). Perspectives of families regarding confidentiality and mental illness. In J. Gates & B. Arons (Eds.), Privacy and confidentiality in mental health care (pp. 3346). Baltimore: Brookes Publishing, Louis Harris&Associates. (1993). Health information privacy survey, 1993. New York: Author. McGuire, J. M., Toal, P., & Blau, B. (1985). The adult client's conception of confidentiality in the therapeutic relationship. Professional Psychology, Research and Practice, 16, 375-384. Melton, G. B. (2000). Privacy issues in child mental health services. In J. Gates & B. Arons (Eds.), Privacy and confidentiality in mental health care (pp. 47-70). Baltimore: Brookes Publishing. Moran. D. W. (1998). Health information policy: On preparing for the next war. Health Affairs (Millwood), 17, 9-22. National Alliance for the Mentally Ill. (1998). Ptlblic policy platform of the National Alliance for the Mentally Ill (3rd ed., section 8.5). Arlington, VA: Author. Norman, I., & Rosvall, S. B. (1994). Help-seeking behavior among mental health practitioners. Clinical Social Work Journal, 22,449460. Nowell. D., & Spruill, J. (1993). If it's not absolutely confidential. will information be disclosed? Professional Psychology, Research and Practice, 24, 367-369. O'Harrow, R. (1998. February 15). Prescription sales, privacy fears: CVS, Giant share customer records with drug marketing firm. The Washington Post, p. AOl. Peck. R. ( 1994). 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Researching the effects of confidentiality law on patients' self-disclosures. Professional Psychology, Research and Practice, 21, 72-75. Wallet', A. (1995). Health care issues in health care reform. Whittier Law Review, 16, 15-49. Westin. A. (1993). Interpretive essay. In Louis Harris and Associates. Health information privacy survey, 1993 (p. 7). New York: Louis Harris and Associates. 450 CHAPTER 8 A VISION FOR THE FUTURE Contents Continue To Build the Science Base .............................................. 453 OvercomeStigma ... . .......................................................... 454 Improve Public Awareness of Effective Treatment .................................... 454 Ensure the Supply of Mental Health Services and Providers ............................ Ensure Delivery of State-of-the-Art Treatments ...................................... Tailor Treatment to Age, Gender, Race, and Culture .................................. 455 455 456 Facilitate Entry Into Treatment .................................................... 457 Reduce Financial Barriers to Treatment ............................................. 457 Conclusion ................................................................... 458 References .................................................................... 458 CHAPTER 8 A VISION FOR THE FUTURE M ental health is fundamental to health and human functioning. Yet much more is known about mental illness than about mental health. Mental ill- nesses are real health conditions that are characterized by alterations in thinking, mood, or behavior-all mental, behavioral, and psychological symptoms mediated by the brain. Mental illnesses exact a stagger- ing toll on millions of individuals, as well as on their families and communities and our Nation as a whole. Appropriate treatment can alleviate, if not cure, the symptoms and associated disability of mental illness. With proper treatment, the majority of people with mental illness can return to productive and engaging lives. There is no "one size fits all" treatment; rather, people can choose the type of treatment that best suits them from the diverse forms of treatment that exist. The main findings of the report, gleaned from an exhaustive review of research, are that the efficacy of mental health treatments is well documented and a range of treatments exists for most mental disorders. On the strength of these findings, the single, explicit recommendation of the report is to seek help if you have a mental health problem or think you have symp- toms of a mental disorder. Today, the majority of those who need mental health treatment do not seek it. The reluctance of Americans to seek and obtain care for mental illness is all too understandable, given the many barriers that stand in their way. If the information contained in this Surgeon General's report is to be translated into its recommended action--to seek help for mental ill- ness-our society must resolve to dismantle barriers to seeking help that are sizable and significant, but not insurmountable. This vision for the future proposes to the American people broad courses of action meant to hasten progress toward the major recommendation of this report. These calls to action constitute necessary first steps toward overcoming the gaps in what.is known and removing the barriers that keep people from seeking and obtain- ing mental health treatment. Although these are not formal policy recommendations, they offer a focused vision that may inform future policy. They are intended for policymakers, service and treatment providers, professional and advocacy organizations, researchers, and, most importantly, the American people. The health of the American people demands that we act with resolve and a sense of urgency to place mental health as a cornerstone of health and address through research and education both the impact and the stigma attached to mental illness. Continue To Build the Science Base The Nation has realized immense dividends from 5 decades of investment in research focused on mental illness and mental health. Yet to realize further ad- vances in treatment and, ultimately, prevention, the Nation must continue to invest in research at all levels. This Surgeon General's report is issued at a time of unprecedented scientific opportunity. Today, integra- tive neuroscience and molecular genetics present some of the most exciting basic research opportunities in medical science. Molecular and genetic tools are being used to identify genes and proteins that might be involved in the origins of mental illness and that clearly are altered by drug treatment and by the environment. Genes and gene products promise to provide novel targets for new medications and psychosocial interven- tions. The opportunities available underscore the need for the Federal mental health research community to 453 Mental Health: A Report of the Surgeon General strengthen partnerships with both the biotechnology and the pharmaceutical industries. Gaining new knowl- edge about mental illness and health is everybody's business. A plethora of new pharmacologic agents and psychotherapies for mental disorders affords new treatment opportunities but also challenges the scien- tific community to develop new approaches to clinical and health services interventions research. Responding to the calls of managed mental and behavioral health care systems for evidence-based interventions will have a much needed and discernible impact on practice. Also, as this Surgeon General's report emphasizes. high-quality research is a potent weapon against stigma, one that forces skeptics to let go of misconceptions and stereotypes concerning mental illness and the burdens experienced by persons who have these disorders. Special effort is required to address pronounced gaps in the mental health knowledge base. Key among these are the urgent need for research evidence that supports strategies for mental health promotion and illness prevention. Each chapter in this report has identified additional, specific gaps that must be ad- dressed. The vitality of clinical research hinges on the willing participation of clinical research volunteers. By law, subjects in federally sponsored research are required to give informed consent-that is, to agree to participate voluntarily after being informed about the purpose, benefits, and risks of the research, among other requirements (45 CFR 46). The law affords special protections for children and for persons with impaired decisionmaking capacity. Policies must be promulgated to ensure that vulnerable individuals are protected while they participate in research needed for the development of new treatments. Overcome Stigma The stigma that envelops mental illness deters people from seeking treatment. Stigma assumes many forms, both subtle and overt. It appears as prejudice and discrimination, fear, distrust, and stereotyping. It prompts many people to avoid working, socializing, and living with people who have a mental disorder. Stigma impedes people from seeking help for fear that the confidentiality of their diagnosis or treatment will be breached. It gives insurers-in the public sector as well as the private-tacit permission to restrict cover- age for mental health services in ways that would not be tolerated for other illnesses. Chapter 1 reviewed the influence of stigma historically in separating mental health from the mainstream of health and its role in thwarting access to appropriate treatment. Powerful and pervasive. stigma prevents people from acknowledging their own mental health problems, much less disclosing them to others. For our Nation to reduce the burden of mental I illness, to improve access to care, and to achieve urgently needed knowledge about the brain, mind, and behavior, stigma must no longer be tolerated. The issuance of this Surgeon General's Report on Mental Health seeks to help reduce stigma by dispelling myths about mental illness and by providing accurate knowl- edge to ensure more informed consumers. Organiza- tions and individuals are encouraged to draw freely upon the report in their own efforts to combat the insidious effects of stigma. Improve Public Awareness of Effective Treatment The Surgeon General's report itself is expected to stimulate the demand for effective treatment for needed mental health care. Americans are often unaware of the choices they have for effective mental health treat- ments. In fact. as the preceding chapters demonstrate, there exists a constellation of treatments for most mental disorders. Treatments fall mainly under several broad categories-counseling, psychotherapy, medica- tion therapy, rehabilitation-yet within each category are many more choices. Individuals should be encouraged to seek help from any source in which they have confidence. If they do not improve with the help obtained initially, they should be encouraged to keep trying to obtain assis- tance. If the path of help-seeking leads to only limited improvement, an array of options still exists: the intensity of treatment may be changed. new treatments may be introduced. or another provider may be sought. 454 Family members, clergy, and friends often can help by encouraging a distressed person to seek help. All human services professionals, not just health professionals, have an obligation to be better informed about mental health treatment resources in their com- munities. Managed care companies and other health insurers need to publish clear information about their mental health benefits (usually called "behavioral health benefits"). At present, many beneficiaries appear not to know ifthey have mental health coverage, much less where to seek help for problems. Ensure the Supply of Mental Health Services and Providers The service system as a whole. as opposed to treatment services considered in isolation, dictates the outcome of treatment (Goldman, 1998). The fundamental compo- nents of effective service delivery include integrated community-based services, continuity of providers and treatments, family support services (including psychoeducation), and culturally sensitive services. Effective service delivery for individuals with the most severe conditions also requires supported housing and supported employment. For adults and children with less severe conditions, primary health care, the schools, and other human services must be prepared to assess and, at times, to treat individuals who come seeking help. All services for those with a mental disorder should be consumer oriented and focused on promoting recovery. That is, the goal of services must not be limited to symptom reduction but should strive for restoration of a meaningful and productive life. Across the Nation, certain mental health services are in consistently short supply. These include the following: o Wraparound services for children with serious emotional problems and multisystemic treatment. Both treatment strategies should actively involve the participation of the multiple health, social service, educational, and other community re- sources that play a role in ensuring the health and well-being of children and their families; A Vision for the Future o Assertive community treatment, an intensive approach to treating people with serious mental illnesses; o Combined services for people with co-occurring severe mental disorders and substance abuse disorders; . A range of prevention and early case identification programs; and o Disease management programs for conditions such as late-life depression in primary care settings. All too frequently, these effeitive programs are simply unavailable in communities. It is essential to expand the supply of effective, evidence-based services throughout the Nation. The supply of well-trained mental health profes- sionals also is inadequate in many areas of the country, especially in rural areas (Peterson et al., 1998). Particu- larly keen shortages are found in the numbers of mental health professionals serving children and adolescents with serious mental disorders and older people (Peter- son et al., 1998). More mental health professionals also need to be trained in cognitive-behavioral therapy and interpersonal therapy, two forms of psychotherapy shown by rigorous research to be effective for many types of mental disorders. Ensure Delivery of State-of-the-Art Treatments State-of-the-art treatments, carefully refined through years of research, are not being translated into commu- nity settings. As noted throughout this report, a wide variety of community-based services are of proven value for even the most severe mental illnesses. Excit- ing new research-based advances are emerging that will enhance the delivery of treatments and services in areas crucial to consumers and families-employment. housing, and diversion of people with mental disorders out of the criminal justice systems. Yet a gap persists in the broad introduction and application of these advances in services delivery to local communities. and many people with mental illness are being denied the most up-to-date and advanced forms of treatment. 455 Mental Health: A Report of the Surgeon General Multiple and complex explanations exist for the gap between what is known through research and what is actually practiced in customary care. Foremost among these are practitioners' lack of knowledge of research results; the lag time between the reporting of research results and the translation of new knowledge into practice; and the cost of introducing innovations in health systems. In addition, significant differences that exist between academic research settings and actual practice settings help account for the gap between what is known and what is practiced. The patients in actual practice are more heterogeneous in terms of their overall health and cultural backgrounds, and both patients and providers are subject to cost pressures. New strategies must be devised to bridge the gap between research and practice (National Advisory Mental Health Council, 1998). Tailor Treatment to Age, Gender, Race, and Culture This report presents clear evidence that mental health and mental illness are shaped by age, gender, race, and culture as well as additional facets of diversity that can be found within all of these population groups-for example, physical disability or a person's sexual orientation. The consequences of not understanding these influences can be profoundly deleterious. To be effective, the diagnosis and treatment of mental illness must be tailored to individual circum- stances, while taking into account, age, gender, race, and culture and other characteristics that shape a person's image and identity. Services that take these demographic factors into consideration have the greatest chance of engaging people in treatment, keeping them in treatment, and helping them to recover thereafter. The successful experiences of individual patients will positively influence attitudes toward mental health services and service providers, thus encouraging others who may share similar concerns or interests to seek help. While women and men experience mental disorders at almost equal rates. some mental disorders such as depression. panic disorder. and eating disorders affect women disproportionately. The mental health service system should be tailored to focus on women's unique needs (Blumenthal, 1994). Members of racial and ethnic minority groups account for an increasing proportion of the Nation's population. Mental illness is at least as prevalent among racial and ethnic minorities as in the majority white population (Regier et al.. 1993). Yet many racial and ethnic minority group members find the organized mental health system to be uninformed about cultural context and. thus, unresponsive and/or irrelevant. It is partly for this reason that minority group members overall are less inclined than whites to seek treatment (Sussman et al., 1987; Gallo et al., 1995), and to use outpatient treatment services to a much lesser extent than do non-Hispanic whites. Yet it is important to acknowledge and appreciate that there exist wide variations within and among racial and ethnic minority groups with respect to use of mental health services. The use of inpatient treatment services by African Americans, for example, is much higher than use of these services by whites, a difference that cannot be accounted for by differences in prevalence alone (Chapter 2). The reasons for these disparities in utiliza- tion of services must be further understood through research. In the interim, culturally competent ser- vices-that is, services that incorporate understanding of racial and ethnic groups, their histories, traditions, beliefs, and value systems-are needed to enhance the appropriate use of services and effectiveness of treat- ments for ethnic and racial minority consumers. With appropriate training and a fundamental respect for clients, any mental health professional can provide culturally competent services that reflect sensitivity to individual differences and, at the same time, assign validity to an individual's group identity. Still, many members of ethnic and racial minority groups may prefer to be treated by mental health professionals of similar background. There is an insufficient number of mental health professionals from racial and ethnic minority groups (Peterson et al., 1998), a problem that needs to be corrected. 456 Facilitate Entry Into Treatment The mental health service system is highly fragmented. Many who seek treatment are bewildered by the maze of paths into treatment; others in need of care are stymied by a lack of information about where to seek effective and affordable services. In recent years, some progress has been made in coordinating services for those with severe mental illness, but more can be accomplished. Public and private agencies have an obligation to facilitate entry into treatment. There are multiple "portals of entry" to mental health care and treatment, including a range of community and faith- based organizations. Primary health care could be an important portal of entry for children and adults of all ages with mental disorders. The schools and child welfare system are the initial points of contact for most children and adolescents, and can be useful sources of first-line assessment and referral, provided that exper- tise is available. The juvenile justice system represents another pathway, although many overburdened facili- ties tend to lack the staff required to-deal with the magnitude of the mental health problems encountered. Of equal concern are the adult criminal justice and corrections systems, which encounter substantial numbers of detainees with mental illness (Ditton, 1999). Individuals with mental disorders often are neglected or victimized in these institutions. It is essential for first-line contacts in the commu- nity to recognize mental illness and mental health problems, to respond sensitively, to know what re- sources exist, and to make proper referrals and/or to address problems effectively themselves. For the general public, primary care represents a prime oppor- tunity to obtain mental health treatment or an appropri- ate referral. Yet primary health care providers vary in their capacity to recognize and manage mental health problems. Many highly committed primary care provid- ers do not know referral sources or do not have the time to help their patients find services. Some people do not seek treatment because they are fearful of being forced to accept treatments not of their choice or of being treated involuntarily for pro- longed periods (Sussman et al., 1987; Monahan et al., 1999). For most, these fears are unwarranted: coercion, A Vision for the Future or involuntary treatment, is restricted by law only to those who pose a direct threat of danger to themselves or others or, in some instances, who demonstrate a grave disability. Coercion takes the form of involuntary commitment to a hospital; in about 40 states and territories, it includes certain outpatient treatment requirements. Advocates for people with mental illness hold divergent views regarding coercion. Some advo- cates crusade for more stringent controls and treatment mandates, whereas others adamantly oppose coercion on any grounds. One point is clear: the need for coercion should be reduced- significantly when ade- quate services are readily accessible to individuals with severe mental disorders who pose a threat of danger to themselves or others (Policy Research Associates, 1998). As the debate continues, more study is needed concerning the effectiveness of different strategies to enhance compliance with treatment. Almost all agree that coercion should not be a substitute for effective care that is sought voluntarily. Reduce Financial Barriers to Treatment Financial obstacles discourage people from seeking treatment and from staying in treatment. Repeated surveys have shown that concerns about the cost of care are among the foremost reasons why people do not seek care (Sussman et al., 1987; Sturm & Sherboume. 1999). As documented in Chapter 6 of this report, there is an enormous disparity in insurance coverage for mental disorders in contrast to other illnesses. Mental health coverage often is arbitrarily restricted. Individu- als and families consequently are forced to draw on relatively-and substantially-more of their own resources to pay for mental health treatment than they pay for other types of health care. This inequity is a deterrent to treatment and needs to be redressed. Recent legislative efforts to mandate equitable insurance coverage for mental health services have been heralded as steps in the right direction for reduc- ing financial barriers to treatment. Still, for the more than 44 million Americans who lack any health insur- ance, equity of mental health and other health benefits is moot. For many who do have health insurance. coverage restrictions for mental health treatment 457 Mental Health: A Report of the Surgeon General persist. Data reveal that access to and use of services have increased following enhancements of mental health benefits in private insurance, Medicare, Medicaid, and the Federal Employees Health Benefit Program. Chapter 6 of this report makes it clear that equality between mental health coverage and other health coverage-a concept known as "parity'`-is an affordable and effective objective. In states in which legislation requires parity of mental health and general coverage, cost increases are nearly imperceptible as long as the care is managed. A recent paper suggests that the value of mental health treatment has increased in recent years-that is, effectiveness has increased-while expenditures have fallen (Franket al., 1999). In light of cost-containment strategies of man- aged care, concerns about under-treatment still are warranted for individuals with the most severe mental disorders, but high-quality managed care has the potential to effectively match services to patient needs. Conclusion This Surgeon General's Report on Mental Health celebrates the scientific advances in a field once shrouded in mystery. These advances have. yielded unparalleled understanding of mental illness and the services needed for prevention, treatment, and rehabili- tation. This final chapter is not an endpoint but a point of departure. The journey ahead must firmly establish mental health as a cornerstone of health: place mental illness treatment in the mainstream of health care services; and ensure consumers of mental health services access to respectful, evidenced-based, and reimbursable care. References Blumenthal, S. J. (1994). Gender differences in mental disorders. Journal of Clinical Psychiatry, 3, 453458. Ditton, P. M. (1999). Mental health and treatment of inmates andprobationers. (Special report NCJ 174463). Wash- ington, DC: U.S. Department of Justice, Office of Justice Programs, Bureau of Justice Statistics. Frank, R. G., McGuire, T. G., Normand, S. L., & Goldman. H. H. (1999). The value of mental health services at the system level: The case of treatment for depression. Health Affairs, 18, 7 l-88. Gallo, J. J., Marino, S., Ford, D., & Anthony, J. C. (1995). Filters on the pathway to mental health care, II. Sociodemographic factors. Psychological Medicine, 25, 1149-l 160. Goldman, H. H. (1998). Organizing mental health services: An evidence-based approach. Stockholm: Swedish Council on Technology Assessment in Health Care. Monahan, J., Lidz, C. W., Hoge, S. K., Mulvey, E. P., Eisenberg, M. M., Roth, L. H., Gardner, W. P., & Bennett, N. (1999). Coercion in the provision of mental health services: The MacArthur studies. Research in Community and Mental Health, 10, 13-30. National Advisory Mental Health Council. (1998). Parit?, in Jinancing mental health services: Managed care effects on cost, access and quality: An interim report to Con- gress by the National Advisory Mental Health Council. Bethesda, MD: Department of Health and Human Services, National Institutes of Health, National Institute of Mental Health. Peterson, B., West, J., Tanielian T., & Pincus, H. (1998). Mental health practitioners and trainees. In R. W. Manderscheid & M. J. Henderson (Eds.), Mental health United States 1998 (pp. 214-246). Rockville, MD: Center for Mental Health Services. Policy Research Associates. (1998). Final report on the Research Study of the New York City Involuntary Outpatient Commitment Pilot Program. Delmar, NY: Author. Regier. D. A., Farmer, M. E., Rae, D. S., Myers, J. K., Kramer, M., Robins, L. N., George, L. K., Kamo, M., & Locke, B. Z. (1993). One-month prevalence of mental disorders in the United States and sociodemographic characteristics: The Epidemiologic Catchment Area study. Acta Psychiatrica Scandinavica, 88, 35-47. Sturm, R., & Sherboume, C. D. (1999). Are barriers to mental health and substance abuse care still rising? Manuscript submitted for publication. Sussman, L. K., Robins, L. N., & Earls, F. (1987). Treatment-seeking for depression by black and white Americans. Social Science Medicine, 24, 187-l 96. Title 45. Code of Federal Regulations, Part 46, Protection of Human Subjects (1991). 458 APPENDIX DIRECTORY OF RESOURCES Lead Agencies Office of the U.S. Surgeon General 5600 Fishers Lane Rockville, MD 20857 Tel: 30 l-443-4000 Fax: 301-443-3574 Web site: www.surgeongeneral.gov Center for Mental Health Services Knowledge Exchange Network P.O. Box 42490 Washington, DC 200 15 Tel: 800-789-CMHS (2647) Fax: 301-984-8796 Email: ken@mentalhealth.org Website: www.mentalhealth.org National Institute of Mental Health Office of Communications and Public Liaison 600 1 Executive Boulevard Room 8 184, MSC 9663 Bethesda, MD 20892-9663 Tel: 301-443-4513 TTY: 301-443-843 1 Fax: 30 l-443-4279 Email: nimhinfo@nih.gov Website: www.nimh.nih.gov Substance Abuse and Mental Health Services Administration Room 12-105 Parklawn Building 5600 Fishers Lane Rockville, MD 20857 Website: www.samhsa.gov Center for Substance Abuse Treatment Website: www.samhsa.gov/csat Center for Substance Abuse Prevention Website: www.samhsa.gov/csap Department of Health and Human Services Agencies Office of the Secretary 200 Independence Avenue, S.W. Washington, DC 20201 Tel: 202-690-7000 Website: www.hhs.gov/progorg/ospage.html Administration for Children and Families 370 L'Enfant Promenade, S.W. Washington, DC 20447 Website: www.acf.dhhs.gov Administration on Aging National Aging Information Center 330 Independence Avenue, SW Washington, DC 20201 Tel: 202-6 19-750 1 Tel: 800-677- 1116 (Eldercare Locator) Email: AoAInfo@aoa.gov Website: www.aoa.dhhs.gov Agency for Health Care Policy and Research Publications Clearinghouse P.O. Box 8547 Silver Spring, MD 20907 Tel: 800-358-9295 Website: www.ahcpr.gov Agency for Toxic Substances and Disease Registry Tel: 888-42-ATSDR or 888-422-8737 Email: ATSDRIC@cdc.gov Website: www.atsdr.cdc.gov Centers for Disease Control and Prevention 1600 Clifton Road Atlanta, GA 30333 Tel: 800-3 1 l-3435 or 404-639-3534 Website: www.cdc.gov 459 Mental Health: A Report of the Surgeon General Food and Drug Administration Center for Drugs, Evaluation and Safety 5600 Fishers Lane, RM 12B-3 1 Rockville, MD 20857 Tel: 888-INFO-FDA (888-463-6332) Web-site: www.fda.gov Health Care Financing Administration 500 Security Boulevard Baltimore, MD 21244 Tel: 410-786-3000 Website: www.hcfa.gov Health Resources and Services Administration Clearinghouse on Maternal and Child Health 2070 Chain Bridge Road, # 450 Vienna, VA 22182 Tel: 88%434-4MCH Website: www.nmchc.org Indian Health Service Headquarters East Parklawn Building 5600 Fishers Lane Rockville, MD 20857 Website: www.ihs.gov National Institutes of Health Bethesda, MD 20892 Email: NIHInfo@od.nih.gov Website: www.nih.gov Program Support Center 5600 Fishers Lane Rockville, MD 20857 Website: www.psc.gov Substance Abuse and Mental Health Services Administration Room 12-105 Parklawn Building 5600 Fishers Lane Rockville, MD 20857 Website: www.samhsa.gov General Federal Government Websites Consumer Information Center Website: www.pueblo.gsa.gov Health Finder Website: www.healthfinder.gov Mental Health: The Cornerstone of Health Website: www.mentalhealth.org . comerstone/index.cfm National Library of Medicine Website: www.nlm.nih.gov National Women's Health Information Center Website: www.4woman.gov U.S. Consumer Gateway-Health Website: www.consumer.gov/health Additional Federal Resources Department of Education 400 Maryland Avenue, SW Washington, DC 20202-0498 Tel: 800-USA-LEARN Website: www.ed.gov Department of Housing and Urban Development 45 1 Seventh Street, SW Washington, DC 20410 Tel: 202-401-0388 TTY: 202-708-1455 Website: www.hud.gov Department of Housing and Urban Development Office of Community Planning and Development 45 1 Seventh Street, SW, Room 7262 Washington, DC 204 10 Tel: 202-708-4300 Fax: 202-708-3617 Website: www.hud.gov/cpd/cpdhome.html 360 Appendix: Directory of Resources Department of Justice Housing and Civil Enforcement Section Civil Rights Division P.O. Box 65998 Washington, DC 200355998 Tel: 202-5 14-47 13 Fax : 202-514-l 116 Website: www.usdoj.gov/crt/activity.html#hce Department of Justice Office of Americans with Disabilities Act Civil Rights Division PO Box 66118 Washington, DC 20035 Tel: 800-5 14-0301 Fax: 202-307-l 198 TDD: 800-5 14-0383 Website: www.usdoj.gov/crt/ada/adahoml.htm Equal Employment Opportunity Commission 1801 L Street, N.W. Washington, DC 20507 Tel: 202-663-4900 TDD: 202-663-4494 Website: www.eeoc.gov National Clearinghouse for Alcohol and Drug Information (NCADI) P.O. Box 2345 Rockville, MD 20847-2345 Tel: 800-729-6686 or 301-468-2600 Fax: 301-468-6433 TDD: 800-487-4889 Email: info@health.org Website: www.health.org National Clearinghouse on Child Abuse and Neglect Information (NCCAN) P.O. Box 1182 Washington, DC 200 13- 1182 Tel: 800-FYI-3366 or 703-385-7565 Fax: 703-385-3206 National Criminal Justice Reference Service (NCJRS) P.O. Box 6000 Rockville, MD 20849-6000 Tel: 800-851-3420 or 301-519-5500 TTY: 877-7 12-9279 Website: www.ncjrs.org National Information Center for Children and Youth with Disabilities (NICHY) P.O. Box 1492 Washington, DC 200 13 Tel: 800-695-0285 Fax: 202-884-8441 E-mail: nichcy@aed.org Website: www.nichcy.org National Institute on Aging/NIH Alzheimer's Disease Education and Referral Center (ADEAR) P.O. Box 8250 Silver Spring, MD 20898-8057 Tel: 800-43704380 Website: www.alzheimers.org National Institute of Justice 8 10 Seventh Street, NW Washington, DC 2053 1 Website: www.ojp.usdoj.gov/nij National Institute on Alcohol Abuse and Alcoholism/NIH Office of Scientific Communication 6000 Executive Boulevard Suite 409 Bethesda, MD 20892-7003 Tel: 30 l-443-3860 Website: www.niaaa.nih.gov National Institute on Child Health and Human Development/NIH NICHD Clearinghouse P.O. Box 3006 Rockville, MD 20847 Tel: 800-370-2943 Website: www.nichd.nih.gov 461 Mental Health: A Report of the Surgeon General National Institute on Drug Abuse/ NIH 6001 Executive Boulevard, Room 5213 Bethesda, MD 20892-9561 Tel: 301- 443-l 124 Email: information@list.nida.nih.gov Website: www.drugabuse.gov National Institute on Neurological Disorders and Stroke/NM Office of Communications and Public Liaison P.O. Box 5801 Bethesda, MD 20824 Tel: 301-496-575 1 Website: www.ninds.nih.gov Social Security Administration Office of Public Inquiries 640 1 Security Boulevard, Room 4-C-5 Annex Baltimore, MD 21235-6401 Tel: 800-772-1213 TTY: 800-325-0778 Fax: 410- 965-0696 Website: www.ssa.gov Veterans Health Administration 1120 Vermont Avenue. NW Washington, DC 20421 Tel : 800-827-1000. Website: www.va.gov/health/index.htm Rehabilitation Services Administration U.S. Department of Education 330 C Street. S.W., Room 3211 Washington, DC Tel: 202-205-5474 Website: www.ed.govlofficeslOSERS/RSA 462 LIST OF TABLES AND FIGURES Chapter 1: Introduction and Themes Table l-l. Disease burden by selected illness categories in established market economies, 1990 Table l-2. Leading sources of disease burden in established market economies, 1990 . Chapter 2: The Fundamentals of Mental Health and Mental Illness Table 2-l. Table 2-2. Table 2-3. Table 2-4. Table 2-5. Table 2-6. Table 2-7. Table 2-8. Table 2-9. Table 2-10. Figure 2- 1. Figure 2-2. Figure 2-3. Figure 2-4. Figure 2-5a. Figure 2-5b. Figure 2-6a. Figure 2-6b. Figure 2-7. Selected neurotransmitters important in psychopharmacology Common signs of acute anxiety Common manifestations of schizophrenia Common signs of mood disorders Major diagnostic classes of mental disorders (DSM-IV) Best estimate l-year prevalence rates based on ECA and NCS, ages 18-54 Children and adolescents ages 9 to 17 with mental or addictive disorders, combined MECA sample Best estimate prevalence rates based on Epidemiologic Catchment Area, age 55+ Selected types of pharmacotherapies Historical reform movements in mental health treatment in the United States Structural variety of neurons How neurons communicate The brain: Organ of the mind The mental health service system Annual prevalence of mental/addictive disorders and services for adults Annual prevalence of mental/addictive disorders and services for adults Annual prevalence of mental/addictive disorders for children Annual prevalence of mental/addictive disorders for children Definitions of recovery from consumer writings 463 Mental Health: A Report of the Surgeon General Chapter 3: Table 3-l. Children and Mental Health Children and adolescents age 9-17 with mental or addictive disorders, combined MECA sample, 6-month (current) prevalence Table 3-2. Table 3-3. Figure 3-l. Figure 3-2. Selected mental disorders of childhood and adolescence from the DSM-IV DSM-IV diagnostic criteria for attention-deficit/hyperactivity disorder Questionnaires used to assess childhood mood disorders Grading the level of evidence for efficacy of psychotropic drugs in children . Chapter 4: Adults and Mental Health Table 4- 1. Table 4-2. Table 4-3. Table 4-4. Table 4-5. Table 4-6. Table 4-7. Table 4-8. Best estimate 1 -year prevalence based on ECA and NCS, ages 18-54 DSM-IV diagnostic criteria for major depressive episode DSM-IV diagnostic criteria for dysthymic disorder DSM-IV diagnostic criteria for manic episode DSM-IV diagnostic criteria for cyclothymic disorder DSM-IV diagnostic criteria for schizophrenia Positive and negative symptoms of schizophrenia Selected treatment recommendations, Schizophrenia Patient Outcomes Research Team Figure 4- 1. Surgeon General's Call to Action to Prevent Su,jcide-1999 Figure 4-2. Treatment of depression-newer pharmacotherapies: Summary findings. Figure 4-3. Risk of developing schizophrenia. Chapter 5: Table 5-l. Table 5-2. Figure 5- 1. Figure 5-2. Older Adults and Mental Health Best estimate 1 -year prevalence rates based on Epidemiologic Catchment Area, age 55+ Settings for mental health services for older adults Increases in the percent of the U.S. population over age 65 years and over age 85 years Neuritic plaques and many neurofibrillary tangles in the hippocampus of an Alzheimer's disease patient. 464 List of Tables and Figures Chapter 6: Organizing and Financing Mental Health Services Table 6-l. Table 6-2. Proportion of adult population using mental/addictive disorder services in one year Proportion of child/adolescent populations (ages g-17) using mental/addictive disorder services in one year Table 6-3. Distribution of 1996 U.S. population and mental disorder direct costs by insurance status Table 6-4. Table 6-5. Table 6-6. Population, spending, and per capita mental health costs by insurance status (1996) Mental health expenditures in relation to national health expenditures, by source of payer, annual growth rate (1986-1996) Mental health expenditures in relation to national health expenditures, by source of payer, 1996 Figure 6- 1. Figure 6-2. Figure 6-3. Figure 6-4. Annual prevalence of mental/addictive disorders and services for adults Annual prevalence of mental/addictive disorders and services for children Global burden of disease-DALYs worldwide-1990 1996 National Health Accounts, $943 billion total-$99 billion mental, addictive, and dementia disorders. Figure 6-5. 1996 National Health Accounts, $69 billion total mental health expenditures by provider type. Figure 6-6. Mental health expenditures by payer-1996 (total = $69 billion) 465 INDEX A A Mind That Found Itself, 93 Abuse, 229-234,250,25 1, 254-256, 286-289, 335,340,342,368-370,427-430.445-449, 455 Acetylcholine, 36, 252, 361, 362 Acetylcholinesterace (AchE), 362 Acute stress disorder, 233,237 Addictive disorders, 17,23, 36,46,48, 126, 193,244,408 Administration on Aging, 370,37 1 Adolescent Antisocial Self Report Behavior Checklist, 139 Adult day centers, 363, 371-374, 380 Adverse selection, 20,420,423,426,429 African Americans, 73,81-89, 152, 181,225, 227,230,249, 263, 273,282, 288, 289, 348,368,456 Agency for Health Care Policy and Research, 263,280,424 Aging, 19, 335-341, 344,345,348, 349, 357, 360,361,368-372,374-376,379,38 1 Agoraphobia, 47,48, 161,228,233-235. 239, 336 AIDS, 71, 138, 173,286,363,366,439 Air Force Surgeon General, 160 Akathisia, 89, 28 1, 344 Alcohol. See Substance abuse Alcohol and Drug Abuse and Mental Health Administration Reorganization Act of 1992. See Public Law 102321 Alcoholics Anonymous, 94,289 Alprazolam, 242,355 Alzheimer's disease, 356-364 acetylcholinesterase (AChE) inhibitors, 362 assessment and diagnosis of, 357-360 caregivers, 363-364 causes, acetylcholine and, 36 l-362 causes, biological factors, 360-36 1 causes, histopathology and pathophysiology, 36 1 causes of, 360-362 causes, protective factors, 360-36 1 cost of, 360 course of, 359 diagnosis and prevention of progression, 357,358 gender and, 359 graying of America and, 360 memory aids, 363 mild cognitive impairment (MCI), 357-359 prevalence and incidence of, 359-360 primary care providers, 358 societal view of senility, 358 symptoms of, 356,359 treatment of behavioral symptoms, 362-363 treatment, cognitive and behavioral, 363 treatment of depression, 363 treatment, in nursing homes, 364 treatment, pharmacological, 362-363 treatment, psychosocial, of patients and caregivers, 363-364 American Academy of Child and Adolescent Psychiatry (AACAP), 146, 158 American Academy of Pediatrics, 149, 183 American Association of Retired Persons, 370 American Medical Association (AMA), 438 American Psychiatric Association, 5,6,44,45, 145,233,234,241-243,262,266,369, 375,438,445 American Psychological Association (APA), 11,71,91, 140, 147, 155, 162, 166, 438, 445 American Psychological Association Task Force Criteria, 140, 155, 162, 166 Americans With Disabilities Act (ADA), 285, 446,447 Amino acids, 36,37 Amnesia, 237 Amphetamine salts, 146 Amphetamines, 158 Amygdala, 36, 38,239,240 467 Mental Health: A Report of the Surgeon General Anhedonia, 41,42, 245,27 1 Anorexia nervosa, 47,48, 53, 136, 167, 228, 336 Anthony, William, 100 Anticonvulsants, 69, 260, 266,268 Antidepressants, 26 l-266, 352-355 Antioxidants, 361 Antipsychotics, 271, 274, 278-280, 281, 283, 343,362,366,367 Anxiety, 40-4 1 animal model of, 52 anxiety disorder defined, 40 causes and onset of, 40 depression and, 253-54 Anxiety disorders in adults, 225-226, 233-243 acute and post-traumatic stress disorders, 237 acute stress response and the brain, 238-239 agoraphobia, 234-235 anatomic and biochemical bases of, 239-240 causes of, 239-241 combined psychotherapy and pharmacotherapy, 242 counseling and psychotherapy for, 241, ' 243 generalized anxiety disorder, 235-236 neurotransmitter alterations, 240 obsessive-compulsive disorder. 236-237 occurrence and co-occurrences, 233 panic attack and panic disorder, 233-234 pharmacotherapy for, 242-243 psychological theories of, 240-241 social phobia, 235 specific phobias, 235 stressor and stress response defined, 238 treatment of, 241-243 types of, 233-237 Anxiety disorders in children and adolescents, 160-163 CBT and, 162 generalized anxiety disorder, 160 obsessive-compulsive disorder and PANDAS, 162-163 separation anxiety disorder, 160-l 6 1 social phobia, 160-16 1 treatment of, 162 Anxiety disorders in older adults, 364-365 benzodiazepines and, 364-365 buspirone and, 365 post-traumatic stress disorder (PTSD), 364 prevalence of, 364 treatment of, 364-365 Anxiolytics, 69, 71, 242, 243,365 Asian, 81-83,85-88, 182,282,289 Asian/Pacific Islanders, 81-83, 85-88, 182, 242.263,282,289 Aspartate, 37 Asperger's disorder, 137 Assault, 87, 16 1, 230, 237 Assertive community treatment, 80, 92, 99, 227,280,286,287,290,290,295,455 Attachment, 60, 126, 126, 130-132, 165,254 Attention deficit/hyperactivity disorder (ADHD), 142-150 associated disorders and, 144 causes of, 144-145 dopamine hypothesis, 145 inheritance, 145 MTA Study, 148-149 prevalence of, 144 psychostimulants, 146 symptoms of, 142-144 treatment, behavioral, 147-148 treatment, CBT, 148 treatment controversies, 149-150 treatment, multimodal, 148-149 treatment of, 146-150 treatment. pharmacological, 146-147 treatment, psychosocial, 147-148 treatment side effects, 146-147 Attrition factors, 258, 263. 356 Atypical antipsychotics, 69, 345 Auditory hallucinations, 41, 150, 27 1 468 Autism, 23,53, 129, 136, 137, 163, Autistic disorder, 270 Avoidance, 6,41, 82, 161, 229,234 164 ,235,237, 240,254,255,273,343 Axons, 33,37,58 Azopyrine, 243 B Baby boomers, 368,369 Bandura, 57, 126, 162,229 Barriers to treatment, 8, 13, 18-21, 23, 55, 65, 70,72-73,80,86-88,91-92, 138, 160, 192, 193, 226, 244, 256, 257, 280, 294, 296,341.344,346,348-349,352,367, 374, 375, 376, 381,408,416,417,424, 429,453,457 Basal ganglia, 35,55, 163 Bazelon Center for Mental Health Law. 80 Beers, 93 Behavior therapy, 57,66,67, 149, 162-164 Behavioral symptoms, 17, 174, 242, 338, 343, 344,357-360,362-364,374 Benzodiazepines, 69, 142, 162,242,243.268. 343,350,364,365,369,370 Bereavement, 5, 19, 189,230,232, 245,247, 254,335,336,339-341,347,35 1,356,379 Biological models of the mind, 39 Biopsychosocial model of disease, 52 Bipolar disorder. 250, 266. See also Mania Blame, 96, 154, 158, 164, 187, 274 Bowlby, John, 57. 59,60, 126 Boys Town, 177 Brain, 6, 13, 15-17, 239-241,453 anxiety disorders and. 238-240 bottomup studies of, 13 cellular changes in, as result of human experience, 15 as central focus for studies of mental health and illness, 13 genes, role of, 13, 16-17 inseparability of human experience, 15 as mediator of mental function, 13 as mediator of symptoms of mental illness, 453 Index mental disorders and physical changes in. 6 physical changes in as cause of changes in body, 6 prenatal factors, 16 topdown research, 13 Brain damage, 129, 145 Brain, imaging of, 38-39 Brain, neurochemical complexity of, 36-37 aspartate, 37 corticotropin-releasing factor (CFW), 36 dopamine, 36,37 endogenous opiates, 36 gamma ammo butyric acid (GABA), 37 glutamate, 37 ligand-gated channel, 36-37 neurotransmitter receptor, 36 neurotransmitters, 36-37 neurotransmitters as targets of medication, 37 norepinephrine, 37 peptides, 37 serotonin, 37 substance P, 36 Brain, plasticity of, 12, 38 brain structure altered with learning, 38 dual-level examination necessary, 38 genes and, 38 molecular and cellular alterations, 38 as result of stress, substance abuse, and disease, 38 Brain, structural complexity of, 32-37 amygdala, 36 axons, 33,35 basal ganglia, 35-36 cellular level organization, 32-36 cerebral cortex, 33 as distributed information processor, 33 frontal lobe, 33 geographic specialization, 33-36 gray matter, 35 gyc 33 hippocampus, 36 local damage compensated by other regions, 36 469 as mediator of all human behavior, 3 1 and mind, 31 myelin, 33-35 organization of circuits in, 33 occipital lobe, 33 parietal lobe, 33 prefrontal cortex, 33 sulci, 33 white matter, 33-35 Bruner, Jerome, 126, 133 Bupropion, 147,263, 264,266,267,353 Buspirone, 242, 243,244, 365 C California Department of Mental Health, 99 Call to Action on Suicide, 4, 244 Campbell, 95,99, 134, 141, 157, 164, 166,439, 442,443 Cancer diagnosis, reaction to, 52 Carbamazepine, 142, 157, 166, 268 Cardiotoxicity, 263 Caregivers. 21, 59, 60, 133, 165, 187, 188, 189, 232, 343, 356,359,360,363,373, 378-38 1,405,443,449 Carolina Abecedarian Project, 134 Carved-in, carved-out benefits, 376-377,421 Case, definition of, 48 Case management, 94,99, 168, 172-174, 180, 183, 189,193, 280,286-288,290,290,295, 375,376,4 18,426 Case manager, 94, 95, 173, 174 Catatonia, 249, 259, 261 Causation. 10,44,50-52 Causation, difficulty in establishing, 5 l-52 Center for Mental Health Services (CMHS), 24, 80, 82,90,95,107, 186, 188, 189,261, 273,286,290,290,294,295,425 Center for Substance Abuse Treatment, 446 Centers for Disease Control and Prevention, 62, 159 Central nervous system, 42, 61, 129, 145, 163, 25 1,278,338,353 Cerebral cortex. 33,238 Chamberlin. Judi. 93-94 Mental Health: A Report of the Surgeon General 470 CHAMPUS, 192 Child abuse, 130, 132, 135,445,446. See also Abuse Child sexual abuse, 23 1 Children and adolescents, in general, 17-18, 123-194 Children and adolescents, mental disorders in, 123, 136-142 anxiety disorders in. See Anxiety disorders in children and adolescents assessment and difficulty of diagnosis in, 137-138 . attention deficit/hyperactivity disorder, 142-150, 164 autism, 163-164 conduct disorder, 165-166 disruptive disorders, 164-166 eating disorders, 167 evaluation process, 138-l 39 general categories, 136-l 37 medications, off label use of, 141 oppositional defiant disorder (ODD), 164-165 psychopharmacology, and lack of research on medications, 140-142 psychotherapy, and lack of evidence concerning efficacy, 140 shortage of professionals, 138 substance use disorders in adolescents, 166-167 treatment strategies, 139-142 Child and Adolescent Service System Program (CASSP), 188, 189, 192 Child Behavior Checklist, 139 Child Health Insurance Program (CHIP), 183, 407,419 Children and adolescents, 12, 16-18,46,48, 90, 103,247,250,406,409,455,457 Children and Adults with Attention Deficit Disorder (CHADD), 148 Children and Youth Intensive Case Management (CYICM), 173 Children's Services Program, 189, 191 Chlorpromazine, 68, 157, 278, 280 Cholecystokinin, 240 Chronic disability, 337 Index Classical conditioning, 56, 240 Clinical Global Improvement Scale, 156, 157 Clinical psychologist, 138 Clinical research volunteers, 21, 454 Clinician bias, 85, 87, 88, 273,288 overdiagnosis of schizophrenia in African Americans, 88 underdiagnoses, `88 Clomipramine, 164,242 Clonazepam, 242 Clonidine, 147, 166 Clozapine, 268, 278,280-282, 345, 367 Code of Ethics, 438 Coercion, 23,457, Cognition, 39,40,43, 58,62,67, 137, 226, 245,251,269,337,347,359,362,363 Cognitive-behavioral therapy (CBT), 22, 57, 66,67, 126, 140, 148, 155-158, 163, 167, 232,241,265,266,355,356,455 Cognitive capacity, 337 Cognitive decline, 341, 358 Cognitive impairment, 43,48, 146, 228, 260, 336,345,349,354,357-359,363,365,375 Cognitive therapy, 355, 363 Combined services and combined treatment, 18-19,288-289,296,412-413 Community-based interventions, newer, 172 Community Support Program, 290,295 Community treatment, 79, 80,92, 99, 227, 280, 286,287,290,295,455 Comorbid medical illness, 273 and depression, 244 and schizophrenia, 273-274 Comorbidity, 46,47, 63, 72, 166, 167,228, 233, 234, 244, 267, 273,288,338, 340, 342,346,352,354,360.372,377,406,408 Comprehensive care, 225, 289 Conduct disorder, 126, 130-132, 137, 150-152, 164-166, 171, 189 Confidentiality, 13, 20, 21,438,440,447449 Confidentiality: ethical, legal, and policy issues, 437-449 case utilization review and candor, 440 ethical issues, 438439 fostering trust, 439 industry changes, and for profit corporations, 437 more protections may be warranted, 437 protecting privacy, 439-440 reducing stigma, 439 research on confidentiality and treatment. 440-441 technological advances in information usage and storage, 437 values underlying confidentiality, 439-440 Confidentiality of Individually Identifiable Health Information, 447 Confidentiality law, 4404l8 differs for mental health and substance abuse treatments, 448 disclosure, 44345 disclosure to client, and child clients, 443 exceptions to confidentiality, 4424t5 national standard lacking, 441 preemption, 447448 reform proposals, 441-442 in research, 444-445 valid consent rarely defined, 442 waiver of confidentiality, 442 Confidentiality of mental health information, 20-2 1,437-449 information technology and, 2 1 informed consent and, 21 state and Federal laws and, 21 U.S. Supreme Court and, 21 Confusional state, 249 Consent, 21,72,260,261,440,442-449 Consumer advocacy, 29 l-293 Consumer and family, 13, 14,92,96-98, 100, 101 Consumer and family movements, 92-97 blame attributed to families and, 96 consumer groups, origins and goals, 93-94 consumer organizations, accomplishments of, 95-96 consumer roles in research, 95-96 consumers as employees, 95 deinstitutionalization and, 96 family advocacy, 96 471 Mental Health: A Report of the Surgeon General Federation of Families for Children's Mental Health (FFCMH), 96-97 incorporation into other mental health services, 94 National Alliance for the Mentally Ill (NAMI), 96 National Mental Health Association (NMHA), 96-97 Public Law 102-321 and, 95 self-help groups, 94 underrepresentation of ethnic and minority groups in, 93-94 Consumer Bill of Rights and Responsibilities, 20,430,429 Consumer run, 15, 94, 102, 290 Contingency management, 147, 162 Control group, 10, 71, 134, 148, 155, 156, 163, 172, 174, 175, 191,233 Co-occurring mental and substance use disorders combined treatment of, 18-19, 288-289, 296.4 12-l 13 comorbidities. 244 in adolescents, 166-167 in older adults, 368-370 incidence of, 15,46 long-term outcome. 288 post-traumatic stress disorder and, 237 schizophrenia and, 273-274 shortage of services for, 455 Coping and self-monitoring, 284 Correlation, 5 1, 165 Correlational research, 10, 5 1 Corticotropin-releasing factor (CRF), 36 Corticotropin-releasing hormone (CRH), 36, 239,240,242,253 Cortisol, 153 Cost containment, 20,408,417,419,421,429, 437 Cost controls, 423 Counseling, 138, 149, 156, 159, 169, 175, 182, 183,189,232,241, 265, 269, 294, 342, 343, 364,373,406,437 Couples therapy, 65,232 Crisis programs, 178 Crisis services, 12, 16,94, 102, 159, 172, 178-179,288,290 Cultural diversity and mental health services, 45, 55, 80 acculturation, defined, 8 1 Americans and, 88 barriers to treatment of minorities, 86-88 clinician bias, 88 coping and idioms of distress, 83 coping and religious beliefs, 82-83 coping and somatization and folk disorders, 83 coping styles of various cultural groups, 82-83 cost. 87-88 cultural competence, defined, 90 cultural competence in mental health practitioners, 90-9 1 culture and cultural identity, 8 l-82 diversity and demographics, 8 l-83 DSM-IV "Outline for Cultural Formulation," 90 epidemiology and utilization of services, 84 ethnopsychopharmacology, 88-89 family and community as primary resources. 83-85 improving treatment for minority groups, 88-91 income status and role in mental disorders, 82 Indian Health Service (IHS), 90 linguistically and culturally competent services, 81, 225 metabolism, genetic and psychosocial influences, 89 minorities, fear of system by, 80-8 1 minorities poorly served, 80-8 1 minority-oriented services, 89-90 mistrust, 86-87 overdiagnosis of schizophrenia in African Americans, 88 racial or ethnic minority groups, major, Federal designation, 8 1 racist slights, microinsults, 87 rural mental health services, 92 172 Index stigma, 87 treatment effectiveness across race, culture, largely unknown, 9 1 underdiagnoses, 88 under- and overrepresentations in treatment populations, 84-86 unrecognized variations in health-seeking behaviors, 84 Culturally appropriate treatment, 18, 49, 84, 90, 181, 182, 186, Cyclothymia, 226, 244, 245,251 Cystic fibrosis, 53 D Darwin, 60 DATl, 145 Deegan, 97,98 Deinstitutionalization, 7, 8,68,79,93, 96,98, 275, 286, 293, 374,405. See also Institutionalization and deinstitutionalization Delirium, 9,338, 358 Delivery of state-of-the-art treatments, 22, 455 Delusions, 41, 150, 226, 245-247, 249, 270-272,359,362,365,367,371 Demographic characteristics, 405 Dendrites, 33, 61 Department of Health and Human Services, 23, 232,370,413,447 Depression and other mood disorders in adults, 226,228,244-269 acute inpatient treatment, 258 acute phase efficacy in mania, 267-268 anxiety and depression, 253 assessment, 245-25 1 augmentation strategies, 265 biological factors in, 25 l-252 bipolar depression, treatment of, 265-266 bipolar disorder, 246, 249, 250 bupropion, 264 causes, 25 l-257 clinical depression, 244-246 cognitive factors, 254-255 complications and comorbidities, 244-245 continuation phase therapy, 26 1 cyclothymia. 250-25 1 diagnosis and syndrome severity, 245-25 1 dysthymia, 247, 249 electroconvulsive therapy (ECT), 258-26 1 evolving views of, 252-253 female depression, role of environment in, 255-256 gender and, 255-256 heterocyclic antidepressants (HCAs), 262 hippocampus and, 253 learned helplessness, 254-255 maintenance pharmacotherapy vs. psychotherapy, 267 maintenance phase therapies, 261 maintenance treatment in mania, 268 major depressive disorder, 247-248 medication, contributing role in, 25 1 misdiagnosis of schizophrenia in African Americans, 249 monoamine hypothesis, 252 monoamine oxidase inhibitors (MAOIs), 262,264 outpatient treatment, 258 pharmacotherapies, 262-263 pharmacotherapies, alternate, 263-265 pharmacotherapy, psychosocial therapy, and multimodal therapy, 266-267 and primary care, 269 psychosocial and genetic factors in, 254-257 psychotherapy and counseling, 265 relapse, prevention of, 267 remission defined, 26 1 selective serotonin reuptake inhibitors (SSRIs), 262-263,265 service delivery for, 269 social and economic impact, 244 St. John's wort, 264-265 stressful life events, 254 suicide, 244, 245 temperament and personality, 255 therapy, stages of, 257-261 treatment, general. 257-262 173 Index Education. 93-97, 126, 133-136, 183-185, 187-189 Effectiveness and efficacy, 3, lo1 11, 13-15, 21, 22, 65,67, 71, 72,91, 94, 101, 102, 416,418,453 Ego, 56,60,338 Ego integrity, 60, 338 Electroconvulsive therapy (ECT), 65. 93,94, 250,258-262,266-268,354,355 Elmira Prenatal/Early Infancy Project, 134 Employers, 74,289-294, 294,377,407,418, 421 Empowerment, 95,99, 188,289,293 Empowerment Scale, 99 Endocrine factors, 255, 340 Endogenous opiates, 36 Engel, George L., 50 Epidemiologic Catchment Area (ECA), 46-48, 228, 257, 336, 341,348, 349, 364, 369, 406,408 Epidemiology, future directions for mental disorder, case of, defined, 48 mental disorder, establishing threshold for, 48-49 rates of disorder vs. measures of need, 49 treatment, lack of standard measures of need for, 49 Epigenetic influences, 58 Erikson, Erik, 57, 59, 60, 126, 227, 338 Estrogen, 275,342,361,367 Ethical Principles of Psychologists, 438,439 Ethnicity, 80-84, 9 1, 18 1, 182, 262, 282 Ethnopharmacology, 282 Ethnopsychopharmacology, 88-89 Etiology of mental disorders, 3 1,49-57 and age, 5 1 biopsychosocial factors in, 50,52 correlation, causation, and consequences, 51-52 defined, 31 of extroversion, 50 interplay of factors in, 49 of post-traumatic stress disorder, 50-5 1 and stress, 5 1, 52 stressor, defined, 5 1 stress response, defined, 5 1 Etiology research, 11, 3 1, 34 1 Evidence-based interventions, 2 1,454 Evidence-based services, 22,455 Excess disability, 341, 343, 351, 358 Experimental group, 10, 164. 174 Experimental research, 10, 5 1 Extra Organizational Empowerment Scale, 99 Eyberg Child Behavior Inventory, 139 F Family advocacy, 96,98,292 Family Centered Intensive Case Management (FCICM) program, 174 Family Interaction Coding Pattern, 139 Family intervention, 158,283 Family preservation programs, 175 Family support, 22,96, 178, 188, 189,274, 278,364,370,375,380,455 Family therapy, 155, 157, 167, 168, 189 FDA Modernization Act, 141 Fear and anxiety, 31, 36,40, 52, 233-235, 238-240,24 1 Fear of mental health system by minority groups, 80-8 1, 87 Federal Employees Health Benefit Program, 429,458 Federal financing, 376,420 Federal government, role of, in mental health issues, 81, 188, 375,407,415-420,426, 438,447 Federation of Families for Children's Mental Health (FFCMH), 80, 96, 97, 188, 189 Fetal alcohol syndrome, 133, 163 Financial barriers, 20, 23, 257,429,457 Fluoxetine, 147, 156, 164, 243, 262, 263, 353 Flupenthixol, 158 Fluvoxamine, 243,262 Food and Drug Administration (FDA), 10, 11, 70,71, 141,243,262,263,268 Fort Bragg study, 191, 193 Fostering Individualized Assistance Program (FIAP), 174 Freud, Anna. 127 475 Mental Health: A Report of the Surgeon General Freud, Sigmund, 55, 59,66, 124, 126, 127 Frontal lobe, 33, 354, 357 Future directions for epidemiology, 48 G G protein-linked receptors,. 37 Galton, 60 Gamma amino butyric acid (GABA), 37, 240, 242,252 Gatekeepers, 138 Gender, 12, 14, 16. 19, 22, 39,44,55, 63, 81, 86, 101, 102, 153, 159, 171, 228, 235, 244, 2.55: 256,263,275,282,359,426,456. See also Alzheimer's disease; Depression and other mood disorders in adults; Depression and suicide in children and adolescents; Schizophrenia, demographic characteristics in; Schizophrenia in older adults General medical service providers, 4 13 Generalized anxiety disorder, 40,47, 137, 160, 161,225,228,233-236,239.242.243,364 Genetic factors, 50, 127, 153, 163, 226, 237. 251,254,256,276,360 Genetics, 11, 13, 21, 39,52, 53, 100, 129, 144, 257,279,453 Gestalt therapy, 67 Glia, 32 Global Burden of Disease study, 4,411 Glucocorticoids, 239, 240, 25 1 Glutamate, 36, 37 Glycine, 36, 37 Gray matter, 35, 36, 239 Grief, 66, 230, 245, 254, 265, 340, 342, 351, 356 Grob, Gerald, 6,9, 75. 78,93 Group therapy, 65. 177,231 Guanfacine, 147 Gyri, 33 H Hallucinations, 41, 42, 150, 226, 245-247, 249, 26%272,359,365,367 Halopefidol, 69, 164.280,281.367 476 Harvard University, 4 Head Start, 133, 134 Health Care Financing Administration (HCFA), 45,412,416 Health insurance. 20, 182-185, 294,418421, 422.427,438.457 Health insurance benefits, 70,79, 232,292, 407,426-428,455,457 Health maintenance organization (HMO), 374, 376.421,422 Health Security Act, 427 Heart, 147,238.263,268.352,355 Heterocyclic antidepressants (HCAs), 282 Hippocampus, 36,38,61,239,240,252,253 Hispanic Americans, 81, 85, 86, 152, 181, 186-187,256,282,289,368 Histopathology, 36 1 HIV, 54,55,62. 133,251,286,288, 357 Home Based Crisis Intervention (HBCI), 179 Home-based services, 74, 140, 166, 172, 175 Homicide, 244 Hospitalization. 168-173, 286-288, 293, 339, 406,418,423 Human genome project, 52,53 Human services, 22, 23, 73, 75, 133, 232, 289, 292,295.370,378,405-409,413,417,438, 444,447,455. Humanistic approaches. 65-67 Huntington's disease, 53, 357 Hypersomnia, 42, 247 Hyperthyroidism, 234, 250 Hypomania, 151, 153,249,250,25 1.266,348 Hypothalamic-pituitary-adrenocortical (HPA) axis, 239, 252. 253 Hypothalamus, 153, 239, 253 Hypothyroidism, 247,25 1, 256, 338, 357,358 I Id, 56 Illicit drugs, 368, 369 Imipramine, 68, 69, 156, 157, 242, 267, 362 Immune function, 337, 340 Impulsivity, 142-144, 146, 148, 229, 255 Income assistance, 292 Index Kraemer, 129 Kraepelin, 97, 269, 366 L Landscape for aging, 37 1. 372 Language, 5,6,43, 50.62.8 1, 86, 124. 126, 136-138, 149, 163, 164.269,271,337, 356,357,359,437,439,441 Late onset of mental disorders, 244, 347, 350352,366 Late life, 17-19, 23, 104. 335, 339-341, 346, 348,349,354,364,365,367,370 Late-onset depression, 347, 350352 Law enforcement, 133, 191,445,446 Learned helplessness, 254 Lethality, 263 Level of evidence, 10, 11, 142, 159 Lewinsohn, 152, 154, 156 Lifespan, 15, 102 Lifespan approach, 12 Ligand, 36 Limbic system, 163, 238, 239 Limitations in service and insurance benefits, 90,269,288,295,413,417-423,425427 Linguistically and culturally competent services, 8 1, 225 Lithium, 68, 69, 142, 147, 157, 158, 166, 249, 260,265-268 Living With Children, 166 Locus coeruleus, 37 Lorazepam, 242 Lorenz, Konrad, 60 M Madness Network News, 93 Magnetic Resonance Imaging (MRI), 1438, 100,240,347,35 1 Maintenance pharmacotherapy, 26 1,267 Malpractice, 266 Managed behavioral health care organizations (MBHOs), 421 Managed care, 13, 19, - 70, 23, 85,94, 169, 181, 183-185, 268, 282. 290, 336, 370, 371. Income, effects of, in mental health and mental illness, 19,79, 82, 88,99. 135, 180, 183, 189,233,292-294,378,419,422,427 Indemnity, 419,421 Indian Health Service (IHS), 90 Individuals With Disabilities Education Act (IDEA), 183, 184, 188, 189 Inequities in treatment and services, 13, 20, 405,413,426-429,457 Infancy, 44,99, 13 1, 134, 135,342 Infant Health and Development Program. 134 Infections, 52, 133, 163, 251, 278 Informed consent, 2 1, 72, 260,26 1,440,449 Inpatient treatment, 88, 169, 171, 172, 175, 176,258,456 Institute of Medicine (IOM), 5 1,62-64, 94, 96, 225,231,232,255,288,339,343, 374, 380,425 Institutionalization and deinstitutionalization, 68,75, 78-79, 84,93,96,98 Insurance, 407,409,412,413,415-422,424, 426-429,438,440,441,457 Insurance restriction, 426 International Classification of Diseases (ICD), 45,83 Intemeuron, 32 Interpersonal therapy, 22, 66, 125, 155; 157, 167,261,265-267,353,355-356,455 Intervention, 132-136, 140, 155-159,162, 164-166. 177-180, 190192,231,244,260 Invisible Children, 97 Invisible Children's Project, 184 Involuntary commitment, 23,93,457 IQ, 133, 134, 165, 171,337 J Jackson, 84 K Kandel, 6, 57,58, 61, 138, 240 Kaslow and Thomson, 156 Kierkegaard, 67 Knitzer. 97, 171, 187 477 Mental Health: A Report of the Surgeon General 373, 375-378,405,417,420-430,443, treatments and integrative neuroscience, 455,458 100-101 Managed Care Consortium, 291 Mania, 42,43,69, 15 1, 157, 244-246, 249, 25 1,252,258-261,266-268,348 Mann, Horace, 78, 153, 246 MECA Study, 124 Medicaid, 19, 74, 79, 85,.135, 182-186, 294, 360,371,374-377,381,407-409, 415-420,422,458 Medicare, 19, 74,79,294, 360, 369, 371, 375-377,381,407,413,415-420,422,458 Memory, 31,33,36,38,337-338,341, 355-359,362-367 Mendelian disorders, 53 Mendelian transmission, 53 Menninger Clinic, 177 Mental disorders, 4-5, 20, 39-40 brain as mediator in, 39 characterized by, 39 continuum of conditions, 39 cost to the Nation, 20 cultural influence and, 39 defined, 5 Mental Health Parity Act, 427,428 Mental health promotion and illness prevention, 22,454 Mental illness in children and adolescents, 46,48 cluster of signs and symptoms and, 45 co-occurring disorders in adults, 46 cost to the individual, 227 cost to society, 226 costs, 49,225-227,41 l-417 diagnosis of, 43-45 disorder vs. disease, 44 epidemiology, defined, 45 epidemiology of, 45-49 in older adults, 48 demographics and, 39 prevalence of, 20 prevention of, 233 societal burden compared, 34 Mental health, 3-6 defined, 4-5,227 dynamic and ever changing, 16 inseparable from physical health, 5-6 success dependent on, 4-5 vs. somatic health, 6 Mental health and mental illness biological influences on, 52-55 brain and scientific research, 100 causes of, 225 incidence, defined, 45 inseparable from physical illness, 5-6 prevalence, defined, 45 serious emotional disturbance @ED) in children and adolescents, 46 serious mental illness (SMI) in adults, 46 severe and persistent mental illness (SPMI) in adults, 46 symptoms and signs of, 39-40 Mental retardation, 23, 130 Meta-analysis, 11, 167, 168, 175, 266, 355 Metabolism, 88, 89, 154, 238, 263,265, 277, 280,283,342,344 Methodology for Epidemiology of Mental Disorders in Children and Adolescents (MECA) study, 48, 123, 124 Methylphenidate, 145-147, 149, 150, 157, 166 Mild cognitive impairment (MCI), 357, 358 Millon Adolescent Personality Inventory (MAPI), 138 consumer and family movements, 101-102 integrative science of, 57 Kandel and, 57 lifespan and, 102-l 04 organization and financing of care, 101 personality traits, 227-230 psychosocial influences on. 55-57 Mini Mental Status Exam, 359 Minnesota Multiphasic Personality Inventory (MMPI), 139 Minority groups, 23,31,45,73, 80-84, 86-88, 90, 186,233,257,289,456. See also African Americans; Asian/Pacific Islanders; Hispanic Americans; Native Americans/American Indians/Alaska 478 Natives/Native Hawaiians (American Indians) Mirtazapine, 243,263 Modeling, 162, 166 Molecular and cellular biology, 13, 100 Molecular genetics, 11, 13, 21, 39, 100,453 Monoamine hypothesis, 252, 253 Monoamine oxidase inhibitors (MAOIs), 69. 167,243,262,264-266 Moral hazard, 20,420,421,423,426,429 Motor behavior, 33, 27 1 Movement disorders, 343 Multimodal therapies, 139,243 Multimodal Treatment (MTA) Study, 148, 150 Multisystemic therapy (MST), 166, 172, 175 Myelin, 33 N Naltrexone, 370 National Advisory Mental Health Council (NAMHC), 46,424,428,456 National Alliance for the Mentally Ill (NAMI), 80,96,188, 189,292,428,438 National Association of Mental Patients, 94 National Comorbidity Survey (NCS), 46; 47, 167,228,364,406,408 National Household Survey on Drug Abuse, 369 National Institute of Mental Health (NIMH), 24, 32, 52, 53, 54, 61, 84,95, 129, 190, 139, 146, 148, 157, 163, 237, 251, 255, 257,259,260,280,290,342 354,409 National Institutes of Health (NIH), 24, 7 1, 144,259,260,340,341,346,348,349,354 National Mental Health Association (NMHA), 78-80,93,96,97, 133, 183, 189,291 National Mental Health Consumers' Association, 94 National Research Council, 18 1, 232 Native Americans, 86,90, 288 Native Americans/American Indians/Alaska Natives/Native Hawaiians (American Indians), 81, 86, 87,90, 153, 191, 288 Naturalistic studies, 354 Index Nature and nurture, 12. 60.61, 136 Nefazodone. 243,263,267,353 Negative reinforcement, 56, 240 Nerve cells, 13, 32, 33, 37, 100 Neurobiology, 238 Neurocircuits, 239 Neurodevelopmental disruption, 276 Neurodevelopmental theory of schizophrenia. 278 Neuroendocrine systems, 61, 153 Neuroimaging, 239,240,252, 357 Neuroleptic, 68,69, 147, 158, 268, 272, 344. 345,366,367 Neuronal activity, 33 Neurons, 13,32-38,50,54,55,58,61,68, 100, 163, 238, 242,252,253, 262, 361, 362 Neuroscience of mental health, 3 1, 32 Neuroticism, 229,255 Neurotransmitter receptors, 33, 36-38,50, 68-70,262-263,277,280 Neurotransmitters, 33, 36, 37,68,239,240, 252,361 NIMH Diagnostic Interview, 139 Norepinephrine, 36, 37,70,238-240,252,263, 264 Nortriptyline, 353, 354, 356 Nursing, 365, 370-372,374-376,406,413, 417 Nursing homes, 19,71,74,79, 83, 336, 342, 343,350,351,361,364,365,370-372, 374-376,381,406,413,417 0 Obsessive-compulsive disorder (OCD), 55, 236-237 relationship to anxiety, 40-41 Occipital lobe, 33 Off-label usage, 141; 262 Office of the Surgeon General, 23,342 Older adults alcohol and substance use disorders in, 368-370 479 Mental Health: A Report of the Surgeon General anxiety disorders in. See Anxiety disorders in older adults assessment and diagnosis, 340-341 demographics of the near future, and, 19 depression and suicide in. See Depression and mood disorders in older adults interventions for, 19 mental disorders in, 19,`340-346 prevention, 34 l-343 prevention of depression and suicide, 342 prevention of excess disability, 343 prevention of premature institutionalization, 343 prevention, treatment related, 342-343 primary care, 341 primary prevention, 342 schizophrenia. See schizophrenia in older adults treatment for mental disorders, 343-346 Older adults and mental health, 336-340 change and human potential, 338-339 cognitive capacity, 337-338 coping with loss and bereavement, 339-340 normal life-cycle tasks, 337 Omnibus Budget Reconciliation Act, 364, 374, 375 On Our Own, 93 Operant conditioning, 56,57, 166 Oppositional defiant disorder (ODD), 137, 147, 148, 164, 166 Organizational Empowerment Scale, 99 Outpatient treatment, 23,78, 84-87, 168, 169, 180, 189, 192,258,287,456,457 Over-the-counter medication, 353,368 Overdose, 158,262,263 P Panic attacks, 40, 161, 233-236, 239, 241, 243 Panic disorder, 4,4648, 53, 161, 225, 228, 233,234,236,237,239,241-243,257, 336,364,456 Paranoia, 41, 273, 366 Parent Therapist Program, 17 1 Parietal lobe, 33 Parity, 20,96,377,405,426-429,458 Parkinsonism, 89,281,344 Parkinson's disease, 36, 350, 357 Paroxetine, 156,243,262, 353,362 Partial hospitalization/day treatment, 169 Pathophysiology, 253, 350, 361 Patient Bill of Rights, 423 Patient Outcomes Research Team (PORT), 280,283,286,425 Pavlov, Ivan, 56, 125 Pemoline, 146 Peptides, 36 Perception, 7,40,41, 83, 88, 158, 162, 167, 180,240,255,269,27 1,368 Personal Empowerment Scale, 99 Personality disorders, 44, 65, 130, 167, 230, 244,256,258 Personality, theories of, 55-57, 227-229, 243, 246,255 Pharmacodynamics, 282,344,345,353 Pharmacokinetics, 140,242, 282, 345, 368 Pharmacological therapy, 226 Pharmacology, 14 1 Pharmacotherapy, 68,70, 71, 89, 139, 157, 167,226,241-243,257,259,261,263, 265-268,279,280,283,340,343.348, 350,352,353,356,358,363,370 Phenobarbital, 158 Phobia, 40,47,48, 129, 160-162, 225, 228, 232-235,238-239,240,242,243,246, 336 Phobic anxiety, 364 Physical activities, 232 Physical development, 58 Physical health, 5, 6, 71, 128, 225, 230, 274, 348.35 1,355,379,380,448. See also Somatic health Piaget, Jean, 57, 59, 125 Pierce, C. M., 87 Pinel, Philippe, 78 Pituitary gland, 153,239 Placebo effect, 10,65, 70, 71, 88, 89, 147, 156-158, 162, 164, 166,258,261-265, 267,280,352,354-356,362 Planning Board, 24 480 Index Point-of-service plan (POS), 42 1.422 Policy activity, 407 Polypharmacy, 265,342,344,345: 377 Porter. 97 Positive reinforcement. 56. 162 Positron emission tomography (PET) scan, 38, 240 Postsynaptic neuron;33,36 Post-traumatic stress disorder (PTSD). 4,40, 41,47,50, 51,61, 86, 132, 137, 158.225, 228,230-233,237,239,240,242,243. 253,340,364 Preemption. 447,448 Preferred provider organization (PPO), 42 1, 422 Prefrontal cortex, 33, 272 President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry, 423, 425. 430 President's Commission on Mental Health, 45, 93 Prevention of mental disorders, 62-64, 234 Primary care, 18, 19,49, 73, 75, 90, 92, 193, 233, 263, 269, 285, 341, 342, 346, 348-351,356,358,371-373,376,378, 405,406,416,421,425,455,457 Primary Mental Health Project (PMHP); 135, 137 Privacy, 13,20,21,437-441,445-449 Privacy Act of 1974,446 Privilege, 437,447,448 Probably Efficacious Psychosocial Interventions, 140 Problem-solving capacity, 17, 157, 158, 189, 272,278, 337,355,356.363 Productivity, 4, 13, 18,49, 100, 226,244,257, 271,360,411,413 Project ReEducation (ReEd), 170 Protective factors, 22, 62-64, 244, 274, 342, 361,367 Providers of mental health services, 42 l-424, 428--430,455-457 Psychiatric nosology, 49 Psychoanalysis, 56, 66 Psychodynamic theories, 55,56,240 Psychodynamic therapy, 66.356 Psychoeducation, 22, 148. 233.258, 363, 364. 455 Psychological development. 59. 230 Psychopharmacologic treatments. 15 Psychosis, 4, 7,9,40-43,47,54,68,69.79. 146,228,254,259, 274, 354, 356.359, 374 Psychosocial risk factors, 63, 130,252 Psychosocial treatments, 78, 141, 147, 148, 166,226,257,266,282,283,345.355 Psychotherapy, 65-67, 167, 168, 177, 241, 243,257,258,260,265-267,353-356 Public health model, 3 Public Law 102-331, 95, 190 Q Quality and consumers' rights, 430 Quality assessment, 425 R Racial and ethnic minorities, 39, 55,67, 73, 80-82,84-90,94. See also African Americans; Asian/Pacific Islanders; Hispanic Americans; Native Americans/American Indians/Alaska Natives/Native Hawaiians (American Indians) Randomized controlled trial, 10, 133, 189, 233 Range of treatments, 13, 15, 21,64,65, 102, 453 Rape, 50, 230,237,256 Raphe nuclei, 37 Reaching Across, 94 Recovery, 12, 14, 15, 18, 19,22, 32,55, 80,92, 97-102, 128, 137, 154,227,261,274,275, 279,280,283,284,288-290,349,350, 353,354,366,455 Reducing Risks for Mental Disorders, 62 Rehabilitation services, 79,284,286,287,293, 375,406,418 Relapse, 243, 259, 261, 265-268,274,278, 281,283-285,350,353-356,370 481 Mental Health: A Report of the Surgeon General Remission, 71, 156, 161, 226, 249, 258, 261, 274,283,284,349,350,353,354,356,366 Report's principal recommendation, 13, 2 1 Research methods, 10 Research volunteers, 2 1,454 Rett's disorder. 137 Risk factors, 16, 17, 22,51, 53,55, 57,63, 64, 103, 128-133, 136, 145, 151-158, 161. 165, 170, 175, 187, 193, 231, 241,244, 252.256,278,293,336,340-345,347, 350-352,357,361,368,370,378 Risk factors and prevention in childhood and adolescent mental health, 129-136 Robert Wood Johnson Foundation, 190, 19 1, 289,293,295,409 Rogers, Carl, 67 Residential treatment center (RTC), 170, 171 S Social/health maintenance organization (S/HMO), 374 Schizo-affective disorder, 250, 270 Schizophrenia, 41-42, 227-228, 270-286, 365-367. See also Schizophrenia, demographic characteristics in; Schizophrenia in older adults; Schizophrenia, treatment of brain abnormalities in, 276-279 causes, 276-279 comorbid medical illness and, 273-274 coping and self-monitoring, 284-285 diagnosis and cultural variations, 272-273 drug treatment of, 279-283 DSM-IV diagnostic criteria for, 272-273 epidemiology of, 273-274 genetic relationships in, 276 long-term outcomes in, 273-276, 284-285 natural history of, 274-276 onset of, 75-76 rehabilitation in, 274-275, 283-285 risk factors for, 276-278 m-vices for, 279,283-285, 286 symptoms and signs of, 41-42,269-272, 276-278 482 Schizophrenia, demographic characteristics in age, 275-276 culture, 272-273 gender, 275-276,282 race, 272-273,280-283 sociocultural status, 278 Schizophrenia in older adults, 365-367 causes of late-onset schizophrenia, 366-367 epidemiology of, 365 gender in, 367 natural history of, 366 treatment, 366, 367 Schizophrenia Patient Outcome Research Team, 88 Schizophrenia, treatment of, 279-285 ethnopsychopharmacology, 282-283 family intervention, 283 pharmacotherapy, 280-282 psychosocial, 279,283-285 psychotherapy, 283 Schizophrenics Anonymous, 94 Schizophreniform disorder, 250 School system, 75, 169, 180,409 Science base, 9, 21,453 Sedatives, 237,242 Seizures, 258-260, 264, 281, 353-354 Selective serotonin reuptake inhibitors (SSRIs), 69,80,89, 141, 147, 156-158, 162-164, 167,239,242-243,252,262-267,343, 353 Self-efficacy, 189, 190,229, 241 Self-esteem, 4, 6,42,94, 97, 131, 137, 170, 172, 177,225, 228, 229, 237, 250, 285, 290,339,379 Self-help, 14-16,92-97, 99, 101, 102, 289-292,336,340,370,378-380,406, 408 Self-medication, 167 Selye, Hans, 253 Separation anxiety disorder, 12, 16, 103, 137, 160-162,234 Serious emotional disturbance, 172, 180, 184, 185,190, 191 Serious mental illness (SMI), 46,48 Index Serotonergic. 153,265 Fostering Individualized Assistance Sertraline, 243, 262,263, 353 Program (FIAP), 174 Services interventions for children and home-based services, 175- 176 adolescents, 168-179 inpatient treatment, 171-172 case management, 172- 175 multisystemic therapy (MST), 172 , Children and Youth Intensive Care 175-176 Management (CYICM), 173 crisis services, 178-179 Family Centered Intensive Care Management (FCICM), 174 Family preservation programs, 175 hybridization of system complicates state care acts, 78 Services, mental health, including service service to the most needy, 80 linguistically and culturally competent delivery and service system: services and providers, 455-458 services, 8 1, 225 majority with diagnosable disorder do not coercion, 457 delivery of state of the art treatments must receive treatment, 75 mental health services, in general, 73-80 mental hygiene movement, 78 moral treatment movement, 75-78 patterns of use, 75 recovery, 80 newer community-based interventions, 172-178 outpatient treatment, 168- 169 Parent Therapist Program, 17 1 partial hospitalization/day treatment, 169 Project ReEducation (ReEd), 170-171 residential treatment centers (RTCs), 169-170 serious emotional disturbance, defined, 172 therapeutic foster care, 176-177 team approaches, 174- 175 therapeutic group homes, 177-178 treatment interventions, 168-172 Services, mental health, including service delivery and service system: general, 73-80 barriers to accessibility, 2 1 care settings, 74 community mental health movement, 79 community support movement, 80 de facto mental health system, four sectors of, 73 dementia, 78 and dual policies of community care and deinstitutionalization, 79 financing of, 73-74 Grob, Gerald N., 75 history of, in U.S., 75-80 be ensured, 455-456 entry into treatment must be facilitated, 457 financial barriers to treatment must be reduced, 457-458 first-line contacts, 457 gap between knowledge and actual practice, 456 geographical shortages, 455 inequity of coverage for mental and somatic illnesses, 457 justice systems, 457 new strategies needed, 456 respectful, evidence based, and reimbursable care must be ensured, 458 services and providers must be guaranteed, 455 shortages in cognitive behavioral and interpersonal therapy fields, 455 short supply of certain providers, services, 22,455 treatment must be tailored to age, gender, race, and culture, 456 Services, mental health, including service delivery and service system: organization and financing of, 14, 19-20,405-430 cost containment policies, 20 483 Mental Health: A Report of the Surgeon General discriminatory policies in mental health financing, 20 financial barriers to, 20 insurance financing in, 20 managed care, 20 use of by U.S. population, 19 Services. mental health. including service delivery and service system: financing and managing, 4 18426 coverage policy, fairness in, 420 goals for mental health coverage. 4 18 history of financing and roots of inequality, 418 insurance coverage patterns, 4 18-419 lifetime limits for somatic vs. mental illness. 420 limitations on coverage, 418 moral hazard and adverse selection. 420 traditional insurance and dynamics of cost containment. 419320 Services, mental health. including service delivery and service system: managed care. 420-423 access, measurement system of, needed, 424 access to services, impact on, 424 and regulation. 423 carve-out managed behavioral health care. 421 cost controls in managed care, 423 coverage, percentages of, 422 health maintenance organizations (HMOs), 421 managed behavioral health care organizations (MBHOs), 421 managed care effects on service access and quality, 423-424 managed care plans, major types, 42 1 payer carve-outs and health plan subcontracts. 42 1 point-of-service plans (POS), 421 preferred provider organizations (PPOs), 421 quality assessment and quality indicators, 425 quality of care. impact on. 424-426 quality of care not provided incentives, 425 Services, mental health, including service delivery and service system: mental health service system in the U.S.. 405-411 de facto mental health service system, four components of, 405406 patterns of use, 408-409 public and private sectors, defined. 407-408 school system and, 409 structure of U.S. service system, 405406 substantial majority of adults do not . receive treatment, 408 Services, mental health, including service delivery and service system: parity, 426-428 benefit restrictions and, 426-427 gap widening between somatic and mental coverage. 427 legislative trends affecting, 427428 Mental Health Parity Act, 427-428 minimal costs of parity laws, 428 state efforts for, 428 toward parity in mental health coverage, 426-428 Services. mental health, including service delivery and service system: service delivery for adults. 285-289 assertive community treatment, 286-287 case management, 286 comorbidity and, 288-289 for substance abuse and severe mental illness, 288-289 inpatient hospitalization and community alternatives for crisis care, 287-288 intervention for stressful life events, 232-233 overrepresentation of minorities in inpatient units, 288 psychosocial rehabilitation services, 287 recovery and, 288 substance abuse and. 288 Services, mental health, including service delivery and service system: supports and other services for adults, 289-295 consumer advocacy, 29 1 484 Index consumer-operated programs, 290-29 1 consumer self-help, 289-290 discrimination against the mentally ill and, 292 family advocacy, 292 family self-help, 29 l-292 health coverage and barriers to treatment, 294 housing, 292-293 human services, 292-294 income, education, and employment, 293-294 integrating service systems, 295 Services, mental health. including service delivery and service system: service delivery and supports for children and adolescents, 179-193 Child and Adolescent Service System Program (CASSP), 190-191 Children's Services Program (CSP), 19 1 culturally appropriate social support services, 186- 187 effectiveness of systems of care, 191-193 families. redefinition of and new roles for, 188 family support, 188-l 89 family support groups, 189-190 Fort Bragg study, 191-192 integrated system model, 190-l 9 1 practical support, 190 private sector, 182-l 83 public sector, 183-l 84 public sector, managed care in, 185-186 Robert Wood Johnson Foundation, 190, 191,289,293,295,409 service systems and financing, 182-186 Stark County study, 192-193 support and assistance for families, 187-190 utilization, 179-182 utilization and culture, 18 l-l 82 utilization and early termination of treatment, 180 utilization and poverty, 18 1 utilization in relation to need, 180 Wraparound Milwaukee and. 18% 186 Services, mental health. including service delivery and service system: service delivery for older adults, 370-378 adult day care centers and community care settings, 373-374 carved-in mental health services for older adults, 376-377 deinstitutionalization. 374 demographics of residence and, 370 ethnic diversity and, 37 1 financing services for older adults, 376 for severe and persistent mental disorders (SPMDs), 374-376 home vs. nursing home, 372-374 increased role of managed care, 376 Medicaid and, 376 nursing homes ill equipped to treat mental disorders, 374 outcomes under managed care, 377-378 preadmission screening, 374 primary care poorly equipped to treat chronic mental disorders, 372-373 public policy and managed care and, 370-37 1 research needed on cost-effective models for treatment, 376 service settings and the New Landscape for Aging, 37 l-376 setting, role of, in independent functioning, 372 Services, mental health, including service delivery and service system: supports and other services for older adults, 378-380 abuse of older people and, 380 communities and social services, 380-38 1 education and health promotion, 379 families and caregivers, 379-380 support and self-help groups, 378-379 support for caregivers crucial, 378 Services demonstration projects brief history of, 290 Child and Adolescent Service System Program (CASSP), 190 Children's Services Program, 190-191 Fort Bragg study, 191-192 485 Mental Health: A Report of the Surgeon General Robert Wood Johnson Foundation, 190, 191,289,293,295,409 Stark County study, 192-193 Severe and persistent mental disorder (SPMD), 374,375,377,378 Severe and persistent mental illness (SPMI), 79,289,295,415,419 Sex,43,56,60, 133, 135, 151, 176, 231, 236, 255-257. See also Gender Sexual abuse, 23 1,254-256 Sexual orientation, 22, 81, 155,442,456 Side effects, 39, 68,70,72, 89, 141, 146, 147, 156, 163, 164, 166, 226, 243,257,258, 262-263,268,27 1,272,280-282, 342-345,352,353,355,365,367 Skinner, B. F., 56, 125 Sleep, 42-44, 150, 153,245,246, 249-253, 263,271,346,349,350,355,364,365 Sleep disturbances, 245, 350 Social factors, 13,47,48, 50-52, 100, 253, 274,278 Social phobia, 129, 160, 161, 228,233-236, 242,243,336 Social learning theory, 56, 57, 125 Social portfolio, 379 Social status, role of in mental health, 55, 81-82,84,91 Social support services, 18 1, 186 Sociopathy, 229 Somatic health, 6, 232-234, 272-275, 286, 427. See also Physical health Somatization disorder, 230 Somatoform disorders, 44 Specialty mental health providers, 14, 101,413 Specific phobia, 233-235 Spending for mental health services, 12, 19, 49, 174,249,405,41 1417,429 Spirituality, role of. in mental health, 8 1, 82, 98,99,225,232 486 St. John's wort, 70,264-265 Stark County study, 192 State mental health agencies and efforts, 95, 96,291,417,419,442,446A48 State-of-the-art treatments, 22, 455 Stigma, 3,6-q, 12, 14, 16,20-22,73, 80, 84, 85, 87, 92, 96, 101, 103, 160, 180, 186, 188,226,227,244,257,289,291-294, 346, 349, 376, 379,424,429,439,440, 448,449,453,454 Stimulants, 68,69, 142, 145-150,369 Stress disorder, 4,40,41,47,50,61, 86, 132, 137, 158,225,228,230-233,237,239, 240,242,243,253,340,364 Substance abuse, 150-152, 154, 155, 166, 231-234,286-289,368-370,408,412, 413,422,424,427-430,437,438,440, 44 1) 445449,455 Substance abuse laws, 445,446 Substance P, 36 Substance-induced events, 233 Substantia nigra, 37 Suicide, 4,5, 18, 19,52,86, 136, 150, 152-160, 165,167, 170,226,232-233, 244,246,247,256,259,268,272-274, 288,336,339-342,347,349-352,354, 379 Suicide prevention, 159, 160,244, 342, 351 Sulci, 33 Superego, 56,229 Support groups, 189,232,292,356,378,380 Supportive therapy, 158 Supreme Court, U.S., 21,437,439,445,448, 449 Surgeon General, U.S., 4,23,24, 160,244, 342 Synapses, 33,36,38-39, 50,58,61,69,262 T Tardive dyskinesia, 147,268, 281,282,344, 345,367 Team approaches, 174 Temperament, 12, 31, 57,64, 125, 125, 127, 129-132,255 Temporal lobe, 277, 347,362 Therapeutic foster care, 171, 172, 176-178, 184 Therapeutic group homes, 172, 177, 178 They Help Each Other Spiritually (THEOS), 379 Tourette's disorder, 129, 137, 236 Trauma, 18, 51, 52, 130, 159, 161, 170, 225, 230,231,237,254,256,289 Treatment for children and adolescents, 155-160, 168 Treatment, in general, 64-73 attitudinal barriers, 73 barriers to seeking help, 72-73 behavior therapy, 66-67 cognitive-behavioral therapy, 67 complementary and alternative treatments, 70 demographic barriers, 73 efficacy-effectiveness gap, 72 existential, experiential, or Gestalt therapy, 67 failure to seek, due to stigma, 8 financial barriers, 73 Freud and psychoanalysis, 66 group psychotherapy, 65 humanistic therapy, 67 informal social supports now preferred, 8 interpersonal therapy, 66 mechanism of action, defined, 68-70 neurotransmitter function, 68-69 organizational barriers, 73 pharmacological therapies, 68-70 placebo and, 65, 70-7 1 psychodynamic therapy, 66 ' psychotherapy, defined, 65 rational drug design, 68 tailored treatment, 22-23 Treatment interventions, 19, 128, 139, 140, 168, 176,381 Treatment systems, 6 Tricyclic antidepressants (TCAs), 69, 89, 142, 147, 156, 158, 162, 167,242, 243, 262-265,267,352,353 Trust, 21, 60, 87,91,437,439,449 Twins, 54,61,63, 162,163,165,256,276 u Index Under-treatment, 257,348.423,426,458 Unemployment, 64,272,285,292-294 Unipolar depression, 267, 353, 354 v Valproate, 142, 157 Vascular, 352,354, 358 Venlafaxine, 243,263,267, 353 Ventral tegmental area, 37 Verapamil, 268 Violence, 7, 8, 64, 130, 165, 231, 232, 288, 439 Visual hallucinations, 249, 27 1 Vitamin E, 342,357,360,361 Vocational issues and services, 79, 80,99, 226-227,235,275,278-279,283-286, 287,289,294,406 Volunteers, 2 1,454 W Waiver of confidentiality, 442,443 Watson, J. B., 56, 125 Well-Being Project, 99 Well-Established Psychosocial Interventions, 140 White matter, 35, 352 World Health Organization, 4,45, 284,4 11 World Bank, 4,411 Wraparound process, 173,174, 179, 183, 185-186,455 Wraparound Milwaukee, 185-186 Y Youth Emergency Services (YES), 179,438 U.S. Office of Technology Assessment, 180 Unclaimed Children, 96 Uncontrolled studies, 10, 164, 169-172, 174, 177-179, 191,268 487