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. SAMHSA's Center for Mental Health Services
worked in partnership with the National Institute of
Mental Health of the National Institutes of Health to
develop this report under the guidance of Surgeon
General David Satcher. These Federal partners
established a Planning Board comprising individuals
representing a broad range of expertise in mental
health, including academicians, mental health
professionals, researchers in neuroscience and service
delivery, and self-identified consumers of mental health
services and family members of consumers of mental
health services. Also included on the Planning,Board
were individuals representing Federal operating
divisions, offices, centers, and institutes and private
nonprofit foundations with interests in mental health.

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25


CHAPTER 2

THE FUNDAMENTALS OF MENTAL HEALTH
          AND MENTAL ILLNESS
                                                             .

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
<Pearheaded by Albert Bandura (1969, 1977), the
originator of social learning theory (also known as
\ocial cognitive theory). Social learning theory has
its roots in behaviorism, but it departs in a
,ignificant way. While acknowledging classical and
operant conditioning, social learning theory places
l'ar greater emphasis on a different type of learning,
particularly observational learning. Observational
learning occurs through selectively observing the
behavior of another person, a model. When the
behavior of the model is rewarded, children are
more likely to imitate the behavior. For example, a
child who observes another child receiving candy
for a particular behavior is more likely to carry out
similar behaviors. Social learning theory asserts
that people's cognitions-their views, perceptions,
and expectations toward their environment-affect
what they learn. Rather than being passively
conditioned by the environment, as behaviorism
proposed, humans take a more active role in
deciding what to learn as a result of cognitive
processing. Social learning theory gave rise to
cognitive-behavioral therapy, a mode of treatment
described later in this chapter and throughout this
report.

The Integrative Science of Mental Illness
and Health
Progress in understanding depression and schizo-
phrenia offers exciting examples of how findings
from different disciplines of the mental health field
have many common threads (Andreasen, 1997).
Despite the differences in terminology and
methodology, the results from different disciplines
have converged to paint a vivid picture of the
nature of the fundamental defects and the regions
of the brain that underlie these defects. Even in the
case of depression and schizophrenia, there is much

to be uncovered about etiology, yet the mental
health field is seen as poised "to use the power of
multiple disciplines." The disciplines are urged to
link together the study of the mind and the brain in
the search for understanding mental health and
mental illness (Andreasen, 1997).
This linkage already has been cemented
between cognitive psychology, behavioral
neurology, computer science, and neuroscience.
These disciplines have knit together the field of
"cognitive neuroscience'* (Kysslyn & Shin, 1992).
This new and joint discipline has carved out its
own professional society, journals (Waldrop,
1993), and textbooks (Gazzaniga et al., 1998).
There is movement toward integration of other
disciplines within the field. To promote linkages
between psychiatry and the neurosciences, neuro-
scientist Eric R. Kandel has furnished a novel
approach. His essay, "A New Intellectual Frame-
work for Psychiatry," supplies a set of biological
principles to forge a rapprochement-conceptual as
well as practical-between the two disciplines
(Kandel, 1998). Integrated approaches are seen as
vital to tackle the monumental complexity of
mental function.

Overview of Development,
Temperament, and Risk Factors
How we come to be the way we are is through the
process of development. Generally defined as the
lifelong process of growth, maturation, and change,
development is the product of the elaborate
interplay of biological, psychological, and social
influences. By studying development, researchers
hope to uncover the origins of both mental health
and mental illness.

This section elaborates and extends concepts
introduced above regarding the fundamental
workings of the brain at different developmental
stages. It then proceeds to explain several seminal
theories of development pioneered by Jean Piaget,
Erik Erikson, and John Bowlby. Their theories

cover  cognitive development, personality
development, and social development, respectively,

57


Mental Health: A Report of the Surgeon General

although there is some overlap. Their major works,
published in the 1950s and 196Os, were pivotal for
the psychological and social sciences, galvanizing
a huge body of theoretical and empirical research.
However, with the advancements of science and the
diversity of the population, these models may not
apply to all groups without some adaptation for
cultural context. The section concludes with a
reminder that the brain is the "great synthesizer" of
the many biological, psychological, and sociocul-
tural phenomena that make us who we are.

Physical Development

Physical development of the nervous system
provides the architecture for mental function
(cognition, mood, and intentional behavior). As can
be inferred from the discussion of brain complexity
in the introductory section, nervous system
development is arguably one of the most monu-
mentally complicated developmental achievements.
One hundred billion neurons must form elaborate
and precise arrays of interconnections. Neurons
begin the  developmental process as
undifferentiated cells,  cells so seemingly
anonymous that they are almost indistinguishable
from other cells in an embryo. On the basis of
genetic and epigenetic" influences, the cells must
first specialize, or differentiate, into neurons,
migrate to their final position, and then send their
growing axons (the branch of a neuron that
transmits impulses) to project over long distances
in order to form synapses with distant target cells
(Kandel et al., 1995).

Most neurobiologists are astounded at the level
of precision that neurons achieve in their
interconnections. The process of nervous system
development has been studied at increasingly
complex levels-molecular, cellular, tissue, and
behavioral levels. Yet, while researchers have
charted many of the behavioral milestones of
development because they are so amenable to

lo Epigenetic influences are those that arise from outside the genes
and lead to emergent, as opposed to predetermined, properties.

observation and analysis, far less is known about
molecular, cellular, and tissue interactions that
underlie them.

  Four overarching findings or organizing
principles have been gleaned from decades of
neuroscience research. The first finding is that the
formation of connections between neurons and their
target cells depends on axons growing along
anatomical pathways  that are studded with
signaling molecules, much like landing lights
illuminate the runway for a descending plane. The
second finding is that. an axon's reaching the
vicinity of, and locating, its correct target cell
depends on diffusable chemical signals being
transmitted from the target cell. The third finding
is that if an axon does not reach its correct target,
it is likely to die. This phenomenon, known as cell
death, or apoptosis, is so common that it affects up
to half of all developing neurons. The brain
overproduces the number of cells it needs, from
which it pares down to only the correct connections
(Kandel et al., 1995). Finally, neuron activity is
essential to strengthening the connections that are
formed. In other words, stimulation from the
environment-which is translated into neuron
activity-is vital for the forging of normal neural
development (Shatz, 1993; Kandel, 1995). This is
a fundamental principle that is revisited later in this
section. This principle helps to explain why, for
example, babies who are deprived of a stimulating
environment during their first year sometimes
suffer irreparable developmental effects.
  Behavior at birth consists of a repertoire of
simple reflexes, that is, inborn neurological
reactions that are involuntary in nature. Two
examples are the sucking reflex and the rooting
reflex," both of which are designed to ensure food
intake. Over time, the infant displays an expanded
repertoire of fine and gross -motor skills (e.g.,
crawling, walking) that begin to unfold in the first
few months and year of life. These include the

IL Newborns turn their head towards things-typically the
breast-that touch their cheek.

58


The Fundamentals of Mental Health and Mental Illness

,.herished ability to smile, which helps to solidify
;1 social bond with parents and caregivers. What
begins as a child's biological survival need for
food-evidenced by such behaviors as rooting and
I;uckin, o-can turn into a social, interpersonal
rsperience with the caregiver, as in the smile of an
infant at the sight of a nurturing parent. These
burgeoning motor capabilities are the forerunners
of more complex behavioral and mental functions,
but the actual relationships between early and later
abilities, and their molecular and cellular basis, are
understood only in the most rudimentary terms.

Theories of Psychological Development
Theories of human development are grounded in
the developmental perspective. The developmental
perspective takes into account the biological,
social, and psychological -environment; their
interaction; and their combined effect upon the
individual  throughout  the life span.
Developmentalist L. Breger (1974) proposes that
the developmental perspective incorporates three
key precepts:
o Behavioral maturation proceeds from the
simple to the complex;
o Future behaviors, whether temporally near or
distant, are a product of their antecedents (prior
responses to the developmental environment);
  and

o  The human response to a particular event or
experience often depends on the developmental
stage at which the experience occurs.
Each of these precepts is thought to apply to
nemobiological development, as well as behav-
ioral/psychosocial development, Moreover, each
has implications  for whether an individual
experiences either healthful or unhealthful
development that may lead to a mental disorder.
The three precepts are at the heart of each of
the  three  major  mainstream  theories of
developmental psychology that have guided
research and increased our understanding of both
normal and abnormal human development across
the life span. The following paragraphs offer brief

sketches of the developmental theories of Jean
Piaget, Erik Erikson, and John Bowlby; again, these
sketches are provided to afford the reader an
historical perspective of research on psychological
development.

Piaget: Cognitive Developmental Theory
Jean Piaget formulated one of the most influential
theories of cognitive development (Inhelder &
Piaget,  1958). Its focus was on cognitive
(intellectual) development, that is, the processes by
which children come to kno,w and understand the
world. Other aspects of human growth, both
physical and emotional, are beyond the scope of his
theory. Piaget posited that each step of cognitive
development proceeds from the previous step in a
fixed pattern, beginning at birth and ending in the
teen years.

Piaget had a seminal influence on the discipline
of cognitive psychology. Although empirical
research has called into question some of the
specifics of his theories, the broad outlines remain
widely accepted.

Erik frikson: Psychoanalytic Developmental
Theory
The psychoanalytic theory of development is best
exemplified in the work of Erik Erikson, a
psychoanalyst who expanded upon Freud's original
theories of psychosexual development. One of
Erikson's pioneering contributions was that
development unfolded throughout the life span, a
view that has become widely embraced.

Freud postulated that development proceeded
through a series of stages in which children seek
pleasure or gratification from a particular body part
(i.e., the oral, anal, and phallic stage). In contrast,
Erikson's theories of child development focus on
the interrelationship between a developing child's
internal psychosexual development and his or her
more external emotional development, emphasizing
the interpersonal relationships that arise between
the child and parents (Erikson, 1950).

59


Mental Health: A Report of the Surgeon General

Erikson conceived of the life course, from birth
to old age, as a series of eight epigenetic stages
that, as other developmental theories, proceed in a
stepwise fashion, the next dependent upon how
well the previous has been mastered: trust versus
mistrust; autonomy versus shame and doubt;
initiative versus guilt; industry versus inferiority;
identity versus role diffusion; intimacy versus
isolation; generativity versus stagnation; ego
integrity versus despair.

Erikson portrayed each stage as a crisis or
conflict that needed resolution, either at the time or
at a subsequent stage. Each successive stage
presents its own challenges but, at the same time,
offers the opportunity for correction of unresolved
challenges of previous stages. At each stage the
tension was between the psychosocial and
psychosexual-the outward-looking versus inward-
looking perspectives. Psychopathology, in the form
of a mental disorder, would arise if a stage was
ultimately not mastered successfully.
Over the years, Erikson's theory has had great
heuristic value to guide theorists and practitioners
in organizing their approach to mental health and
mental illness. However, his theory does not readily
lend itself to empirical scrutiny. His theory also has
been criticized as reflecting the concerns of male
European culture (where Erikson was born and
trained before moving to the United States) rather
than those of women and other cultures. The need
for cultural sensitivity and competence is discussed
later in this chapter.

John Bow/by: Attachment Theory of
Development
Fifty years ago, a new conceptualization of the
psychoanalytic approach to development came into
the lexicon of human development theory. John
Bowlby's reinterpretation of Freudian development
is grounded in both Darwinian evolutionary theory
and animal ethology. The previous work of Konrad
Lorenz and others, who explored the relationship
between other animals and their caregivers,
determined that the bonds of infant care and the

attachment of young to their caregivers are seminal
in the drive for survival. Similarly, Bowlby
theorized that for humans, attachment to a
caregiver had a biological basis in the need for
survival (Bowlby, 195 1). Moreover, he suggested
that this attachment drive exists alongside the drive
for nutrition and the sex drive, yet distinct and
separate from them. Attachment is seen as the
anchor that enables the developing child to explore
the world.

With the comfort and security of a stable and
routine attachment to the mother-or other primary
caregiver-a child is abk to organize other
elements of development in a coherent way. In
contrast, instability in the caregiving relation-
ship-whether physical distance, erratic patterns of
parental behavior, or even physical or emotional
abuse-may interfere with the sense of trust and
security, potentially giving rise to anxiety and
psychological problems later in childhood or even
decades later in life.

Nature and Nurture: The Ultimate
Synthesis
For over a century, an intense debate among
developmentalists and other scientists has pitted
nature (genetic  inheritance) against nurture
(environment) as the engine of human development
and behavior. Francis Galton, a 19th-century
geneticist and cousin of Charles Darwin, declared
that "there is no escape from the conclusion that
nature prevails enormously over nurture" (cited in
Plomin, 1996). As the debate raged, either nature or
nurture gained ascendancy. During the 1940s and
195Os, for example, behaviorism held sway over
American psychology with its argument that
nurture was preeminent.

The pendulum now is coming to rest with the
recognition that behavior is the product of both
nature  and nurture (Plomin, 1996). Each
contributes to the development of mental health and
mental illness. Nature and nurture are not
necessarily independent forces but can interact with

60


,,,,r' another: nature can influence nurture, and
,,urture can influence nature (Plomin, 1996).

Studies comparing identical and fraternal twins
I,a,s shed light on the contributions of nature and

Ilurwre.  These studies show that for many
b,l,avioral traits, as well as mental disorders, there
,, :, noticeable heritable component (see earlier
,li>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
<ffective than each individually (see Chapter 3).
The evidence for treatment being more effective
Ihan placebo is overwhelming, as documented in
[he main chapters of this report (Chapters 3 through
5). The degree of effectiveness tends to vary,
depending on the disorder and the target population
cc'.g.. older adults with depression). What is
t,ptimnl for one disorder and/or age group may not
he optimal for another. Further, treatments
generally need td be tailored t'o the client and to
client preferences.

The inescapable point is that studies
demonstrate conclusively that treatment is more
effective than placebo. Placebo (an inactive formof
treatment) in both pharmacological and psycho-
therapy studies has a powerful effect in its own
right. as this section later explains. Placebo is more
cffcctive than no treatment. Therefore, to capitalize
on the placebo response, people are encouraged to
\cck treatment, even if the treatment is not as
optimal as that described in this report.

If tmmnent is so effective, then why are so few
prqle receiving it ? Studies reveal that less than
one-third of adults with a diagnosable mental
disorder, and even a smaller proportion of children,
receive any mental health services in a given year.
This section of the chapter strives to explain why
by examining the types of barriers that prevent
People from seeking help. But the chapter first
covers some general points about psychological and
Pharmacological therapies. It also discusses why
therapies that work so well in research settings do
not work as well in practice.

mer treatments are electroconvulsive therapy (Chapters 4 and 5) and
wne types of surgery.

Psychotherapy

Psychotherapy is a learning process in which
mental health professionals seek to help individuals
who have mental disorders and mental health
problems. It is a process that is accomplished
largely by the exchange of verbal communication,
.hence it often is referred .to as "talk therapy."
Many of the theories undergirding each orientation
to psychotherapy were summarized earlier in this
chapter.

Participants in psychotherapy can vary in age
from the very young to the very old, and problems
can vary from mental health problems to disabling
and catastrophic mental disorders. Although people
often are seen individually, psychotherapy also can
be done with couples, families, and groups. In each
case, participants present their problems and then
work with the psychotherapist to develop a more
effective means of understanding and handling
their problems. This report focuses on individual
psychotherapy and also mentions couples therapy
and various forms of family interventions,
particularly psycho-educational approaches.
Although not discussed in the report, group
psychotherapy is effective for selected individuals
with some mood disorders, anxiety disorders,
schizophrenia, personality disorders, and for mental
health problems seen in somatic illness (Yalom,
1995; Kanas, in press).

  Estimates of the number of orientations to
psychotherapy vary from a very small number to
well over 400. The larger estimate generally refers
to all the variations of the three major orientations,
that is, psychodynamic, behavioral, and humanistic.
Each orientation falls under the more general
conceptual category of either action or reflection.

Psychodynamic orientations are the oldest.
They place a premium on self-understanding, with
the implicit (or sometimes explicit) assumption that
increased self-understanding will produce salutary
changes in the participant. Behavioral orientations
are geared toward action, with a clear attempt to
mobilize the resources of the patient in the
direction of change, whether or not there is any


Mental Health: A Report of the Surgeon General

understanding of the etiology of the problem.
Humanistic orientations aim toward increased self-
understanding, often in the direction of personal
growth, but use treatment techniques that often are
much more active than are likely to be employed by
the psychodynamic clinician.

While the following paragraphs focus on
psychodynamic, behavioral, and humanistic
orientations, they also discuss interpersonal therapy
and cognitive-behavioral therapy as outgrowths of
psychodynamic and behavioral therapy, respect-
ively. Psychodynamic, interpersonal, and cognitive-
behavioral therapy are most commonly the focus of
treatment research reported throughout this report.

Psychodynamic Therapy

The first major approach to psychotherapy was
developed by Sigmund Freud and is called
psychoanalysis (Horowitz, 1988). Since its origin
more than a century ago, psychoanalysis has
undergone many changes. Today, Freudian (or
classical) psychoanalysis is still practiced, but
other variations have been developed-ego
psychology, object relations theory, interpersonal
psychology, and self-psychology, each of which
can be grouped under the general term
"psychodynamic" (Horowitz, 1988). The
psychodynamic therapies, even though they differ
somewhat in theory and approach, all have some
concepts in common. With each, the role of the past
in shaping the present is emphasized, so it is
important, in understanding behavior, to understand
its origins and bow people come to act and feel as
they do. A second critical concept common to all
psychodynamic approaches is the belief in the
unconscious, so that there is much that influences
our behavior of which we are not aware. This
makes the process of understanding more difficult,
as we often act for reasons that we cannot state, and
these reasons often are linked to previous
experiences.  Thus,  an important part of
psychodynamic psychotherapy is to make the
unconscious conscious or to help the patient

understand the origin of actions that are troubling
so that they can be corrected.
For some psychodynamic approaches, such as
the classical Freudian approach, the focus is on the
individual and the experiences the person had in the
early years that give shape to current behavior,
.even beyond the awareness of the patient. For
other, more contemporary approaches, such as
interpersonal therapy,  the focus is on the
relationship between the person and others. First
developed as a time-limited treatment for midlife
depression, interpersonal therapy focuses on grief,
role disputes, role transitions, and interpersonal
deficits (Klerman et al., 1984). The goal of
interpersonal therapy is to improve current
interpersonal skills. The therapist takes an active
role in teaching patients to evaluate their
interactions with others and to become aware of
self-isolation and interpersonal difficulties. The
therapist also offers advice and helps the patient to
make decisions.

Behavior Therapy

A second major approach to psychotherapy is
known as behavior modification or behavior
therapy (Kazdin, 1996,1997). It focuses on current
behavior rather than on early patterns of the
patient. In its earlier form, behavior therapy dealt
exclusively with what people did rather than what
they thought or felt. The general principles of
learning were applied to the learning of maladap-
tive as well as adaptive behaviors. Thus, if a person
could be conditioned to act in a functional way,
there was no reason why the same principles of
conditioning could not be employed to help the
person unlearn dysfunctional behavior and learn to
replace it with more functional behavior. The role
of the environment was very important for behavior
therapists, because it provided the positive and
negative reinforcements that sustained or
eliminated various behaviors. Therefore, ways of
shaping that environment to make it more
responsive to the needs of the individual were
important in behavior therapy.

66


More recently, there has been a significant
,ddition to the interests and activities of behavior
therapists. Although behavior continued to be
itnportant in relation t0 reinforcements, Cog-
nitions- what the person thought about, perceived,
or interpreted what was transpiring-were also
seen as important. This combined emphasis led to
a therapeutic  variant known as cognitive-
b~j~a\~ioral therapy, an approach that incorporates
cognition with behavior in understanding and
altering the problems that patients present (Kazdin,
1996).

Cognitive-behavioral therapy draws on
behaviorism as well as cognitive psychology,. a
field devoted to the scientific study of mental
processes,  such as perceiving, remembering,
reasoning, decisionmaking, and problem solving.
The use of cognition in cognitive-behavioral
therapy varies from attending to the role of the
environment in providing a model for behavior, to
the close study of irrational beliefs, to the
importance of individual thought processes in
constructing a vision of the surrounding world. In
each case, it is critical to study what the individual
in therapy thinks and does and less important to
understand the past events that led to that,pattern of
thinking and doing. Cognitive-behavioral therapy
strives to alter faulty cognitions and replace them
with thoughts and self-statements that promote
adaptive behavior (Beck et al., 1979). For instance,
cognitive-behavioral therapy tries to replace self-
defeatist expectations ("I can't do anything right")
with positive expectations ("I can do this right").
Cognitive-behavioral therapy has gained such
ascendancy as a means of integrating cognitive and
behavioral views of human functioning that the
field is more frequently referred to as cognitive-
behavioral therapy rather than behavior therapy
(Kazdin, 1996).

Humanis tic Therapy

The third wave of psychotherapy is referred to
variously as humanistic (Rogers, 1961), existential
(Yalom, 1980), experiential, or Gestalt therapy. It

owes its origins as a treatment to the client-
centered therapy that was originated by Carl
Rogers,  and the theory can be traced to
philosophical roots beginning with the 19th century
philosopher, Soren Kierkegaard. The central focus
of humanistic therapy is the immediate experience
of the client. The emphasis is on the present and the
potential for future development rather than on the
past, and on immediate feelings rather than on
thoughts or behaviors. It is rooted in the everyday
subjective experience of the person seeking
assistance and is much less concerned with mental
illness than it is with human growth.
One critical aspect of humanistic treatment is
the relationship that is forged between the
therapist, who in some ways serves as a guide in an
exploration of self-discovery, and the client, who is
seeking greater knowledge of the self and an
expansion of inherent human potential. The focus
on the self and the search for self-awareness is akin
to psychodynamic psychotherapy, while the
emphasis on the present is more similar to behavior
therapy.

Although it is possible to describe distinctive
orientations to psychotherapy, as has been done
above, most psychotherapists describe themselves
as eclectic in their practice, rather than as adherents
to any single approach to treatment. As a result,
there is a growing development referred to as
"psychotherapy integration" (Wolfe & Goldfried,
1988). It strives to capture what is best about each
of the individual approaches. Psychotherapy
integration includes various attempts to look
beyond the confines of any single orientation but
rather to see what can be learned from other
perspectives. It is characterized by an openness to
various ways of integrating diverse theories and
techniques. Psychotherapy also should be modified
to be culturally sensitive to the needs of racial and
ethnic minorities (Acosta et al., 1982; Sue et al.,
1994; Lopez, in press).

The scientific evidence on efficacy presented in
this report, however, is focused primarily on
specific, standardized forms of psychotherapy.

The Fundamentals of Mental Health and Mental Illness

67


Mental Health: A Report of the Surgeon General

Pharmacological Therapies
The past decade has seen an outpouring of new
drugs introduced for the treatment of mental
disorders (Nemeroff, 1998). New medications for
the treatment of depression and schizophrenia are
among the achievements stoked by research
advances in both neuroscience and molecular
biology. Through the process known as rational
drug design, researchers have become increasingly
sophisticated at designing drugs by manipulating
their chemical structures. Their goal is to create
more effective therapeutic agents, with fewer side
effects,  exquisitely targeted to correct the
biochemical alterations that accompany mental
disorders.

The process was not always so rational. Many
of the older pharmacotherapies (drug treatments)
that had been introduced -by 1960 had been
discovered largely by accident. Researchers
studying drugs for completely different purposes
serendipitously found them to be useful for treating
mental disorders (Barondes, 1993). Thanks to their
willingness to follow up on unexpected leads, drugs
such as chlorpromazine (for psychosis), lithium
(for bipolar disorder), and imipramine (for
depression) became available. The `advent of
chlorpromazine in 1952 and other neuroleptic drugs
was so revolutionary that it was one of the major
historical forces behind the deinstitutionalization
movement that is discussed later in this chapter.
The past generation of pharmacotherapies, once
shown to be safe and effective, was introduced to
the market generally before their mechanism of
action was understood. Years of research after their
introduction revealed how many of them work
therapeutically. Knowledge about their actions has
had two cardinal consequences: it helped probe the
etiology of mental disorders, and it ushered in the
next generation of pharmacotherapies that are more
selective in their mechanism of action.

Mechanisms of Action

The mechanism of action refers to how a
pharmacotherapy interacts with its target in the

body to produce therapeutic effects. Pharma-
cotherapies that act in similar ways are grouped
together into broad categories (e.g., stimulants,
antidepressants). Within each category are several
chemical classes. The individual pharmacotherapies
within a chemical class share similar chemical
structures. Table 2-9 presents several common
categories and classes, along with their indication,
that is, their clinical use.

Many pharmacotherapies for mental disorders
have as their initial action the alteration-either
increase or decrease-in the amount of a
neurotransmitter. Neurotransmitter levels can be
altered by pharmacotherapies in myriad ways:
pharmacotherapies can mimic the action of the
neurotransmitter in cell-to-cell signaling; they can
block the action of the neurotransmitter; or they
can alter its synthesis, breakdown (degradation),
release, or reuptake, among other possibilities
(Cooper et al., 1996).

Neurotransmitters generally are concentrated in
separate brain regions and circuits. Within the cells
that form a circuit, each neurotransmitter has its
own biochemical pathway for synthesis,
degradation, and reuptake, as well as its own
specialized molecules known as receptors. At the
time of neurotransmission, when a traveling signal
reaches the tip (terminal) of the presynaptic cell,
the neurotransmitter is released from the cell into
the synaptic cleft. It migrates across the synaptic
cleft in less than a millisecond and then binds to
receptors situated on the membrane of the
postsynaptic cell. The neurotransmitter's binding to
the receptor alters the shape of the receptor in such
a way that the neurotransmitter can either excite the
postsynaptic cell, and thereby transmit the signal to
this next cell, or inhibit the receptor, and thereby
block signal transmission. The neurotransmitter's
action is terminated either by enzymes that degrade
it right there, in the synaptic cleft, or by transporter
proteins that return unused neurotransmitter back to
the presynaptic neuron for reuse, a "recycling"
process known as reuptake. The widely prescribed
class of antidepressants referred to as the selective

68


The Fundamentals of Mental Health and Mental Illness

fable 2-g. Selected types of pharmacotherapies
--
Categov and Class
AntipsychotiCS (neuroleptics)
Typical antipsychotics*
Atypical antipsychotics*'

Example(s) of Clinical Use

Schizophrenia, psychosis

Antidepressants
Selective serotonin
  reuptake inhibitors
Tricyclic and heterocyclic
  antidepressants'**
Monoamine oxidase inhibitors

Depression, anxiety

Stimulants

Antimanic
Lithium
Anticonvulsants
Thyroid supplementation

Attention-deficit/hyperactivity disorder

Mania

Antianxiety (anxioiytics)
Benzodiazepines
Antidepressants
p-Adrenergic-blocking drugs

Anxiety

Cholinesterase inhibitors
~~

Alzheimer's disease

* Also known as first-generation antipsychotics, they include these chemical classes: phenothiazines (e.g., chlorpromazine),
butyrophenones (e.g., haloperidol), and thioxanthenes (Dixon et al., 1995).
*' Also known as second-generation antipsychotics, they include these chemical classes: dibenzoxazepine (e.g., clozapine),
thienobenzodiazepine (e.g., olanzapine), and benzisoxazole (e.g., risperidone).

*** Include imipramine and amitriptyline.

Source: Perry et al., 1997

\erotonin reuptake inhibitors primarily block the
Lrction of the transporter protein for serotonin, thus
leaving more serotonin to remain at the synapse
(Schloss & Williams, 1998). Depression is thought
to be reflected in decreased serotonin transmission,
so one rationale for this class of antidepressants is
to boost the level of serotonin (see Chapter 4).

Although the effects of reuptake inhibitors on
neurotransmitter concentrations in the synapse
occur with the first dose, therapeutic benefit
typically lags behind by days or weeks. This
observation has spurred considerable recent
research on chronic and "downstream" actions of
psychotropics, particularly antidepressants. For
example, in  animal models the repeated
administration of nearly all antidepressants is
associated with a reduction in the number of

postsynaptic p receptors, so-called down-regulation
that parallels the time course of clinical effect in
patients (Schatzberg & Nemeroff, 1998). Some of
the secondary effects of reuptake inhibitors may be
mediated by the activation of intraneuronal "second
messenger" proteins  which result from the
stimulation of postsynaptic receptors (Schatzberg
& Nemeroff, 1998).

Receptors for each transmitter come in
numerous varieties. Not only are there several types
of receptor for each neurotransmitter, but there may
be many subtypes. For serotonin, for example, there
are seven types of receptors, designated 5-HT,-5-
HT,, and seven receptor subtypes, totaling 14
separate receptors (Schatzberg & Nemeroff, 1998).
The pace at which receptors are identified has

69


Mental Health: A Report of the Surgeon General

become so dizzying that these figures are likely to
be obsolete by the time this paragraph is read.
A pharmacotherapy typically interacts with a
receptor in either one of two ways-as an agonist
or as an antagonist.14 When a pharmacotherapy acts
as an agonist, it mimics the action of the natural
neurotransmitter. When a pharmacotherapy acts as
an antagonist, it inhibits, or blocks, the neuro-
transmitter's action, often by binding to the
receptor and preventing the natural transmitter from
binding there. An antagonist disrupts the action of
the neurotransmitter.

The diversity of receptors presents vast
opportunities for drug development. Through
rational drug design, pharmacotherapies have
become increasingly selective in their actions.
Generally speaking,  the more selective the
pharmacotherapy's action, the more targeted it is to
one receptor rather than another, the narrower its
spectrum of action, and the fewer the side effects.
Conversely, the broader the pharmacotherapy's
action, the less targeted to a receptor type or
subtype, the broader the effects, and the broader the
side effects (Minneman, 1994). However, the
interaction among neurotransmitter systems in the
brain renders some of the apparent distinctions
among medications more apparent than real. Thus,
despite differential initial actions on neuro-
transmitters, both serotonin and norepinephrine
reuptake blockers have similar biochemical effects
after chronic dosing (Potter et al., 1985).

Complementary and Aiterna tive Treatment
Recent interest in the health benefits of a plethora
of natural products has engendered claims related
to putative effects on mental health. These have
ranged from reports of enhanced memory in people
taking the herb, ginseng, to the use of the St. John's
wort flowers as an antidepressant (see Chapter 4).

There are major challenges to evaluating the
role of complementary and alternative treatments in

" There are certainly exceptions to this general rule. Some
pharmacotherapies work as partial agonists and partial antagonists
simultaneously.

maintaining mental health or treating mental
disorders. In many cases, preparations are not
standardized and consist of a variabIe mixture of
substances, any of which may be the active
ingredient(s). Purity, bioavailability, amount and
timing of doses,  and other factors that are
standardized for traditional pharmaceutical agents
prior to testing cannot be taken for granted with
natural products. Current regulations in the United
States classify most complementary and alternative
treatments as "food supplements," which are not
subject to premarketing approval of the Food and
Drug Administration.         .

At present, no conclusions about the role, if
any, of complementary and alternative treatments
in mental health or illness can be accepted with
certainty, as very few claims or studies meet
acceptable scientific standards. With funding from
government and private industry, controlled clinical
trials are under way, including the use of St. John's
wort (Hypericum perforutum) as a treatment for
depression, and omega-3 fatty acids (fish oils) as a
mood stabilizer in bipolar depression. In addition,
it is important for clinicians and investigators to
account for any herbs or natural products being
taken by their patients or research subjects that
might interact with traditional treatments.

Issues in Treatment

The foregoing section has furnished an overview of
the types and nature of mental health treatment.
The resounding message, which is echoed
throughout this report, is that a range of efficacious
treatments is available. The following material
deals with four issues surrounding treatment-the
placebo response, benefits and risks, the gap be-
tween how well treatments work in clinical trials
versus in the real world, and the constellation of
barriers that hinder people from seeking mental
health treatment.

Placebo Response
Recognized since antiquity, the placebo effect
refers to the powerful role of patients' attitudes and

70


The Fundamentals of Mental Health and Mental Illness

perceptions that help them improve and recover
from health problems. Hippocrates established the
therapeutic principle of physicians laying their
hands in a reassuring manner to draw on the inner
resources  of the patient to fight disease.
Technically speaking, the placebo effect refers to
treatment responses in the placebo group, responses
that cannot be explained on the basis of active
treatment (Friedman et al., 1996a). A placebo is an
inactive treatment, either in the form of an inert pill
for studying a new drug treatment or an inactive
procedure for studying a psychological therapy.
The effects of active treatment are often compared
with a control group that receives a pharm-
acological or psychological placebo,
It is not unusual for a placebo effect to be found
in up to 50 percent of patients in any study of a
medical treatment (Schatzberg& Nemeroff, 1998).
For example, about 30 percent of patients typically
respond to a placebo in a clinical trial of a new
antidepressant (see Chapter 4). The rate is even
higher for an antianxiety agent (an anxiolytic)
(Schweizer & Rickels, 1997). The placebo effect is
of such import that a placebo group or other control
group'* is mandated by the Food and Drug
Administration in clinical trials of a new
pharmacotherapy to establish its efficacy prior to
marketing (Friedman et al., 1996a). If the
pharmacotherapy is not statistically superior to the
control, efficacy cannot be established. It is
somewhat more difficult to fashion an analog of an
inert pill in the testing of new and experimental
psychological therapies. Psychological studies can
employ a "psychological" placebo in the form of a
treatment known to be ineffectual. Or they can
employ a comparison group, which receives an
alternative psychological therapy. Some treatment
studies employ both a "psychological" placebo, as
well as a comparison group.`6

I5 when it is unethical to deprive patients of treatment, such as the
case with AIDS, conventional treatment is given as the control.
" The criteria developed by a division of the American
Psychological Association for establishing treatment efficacy call
for the experimental treatment to be statistically superior to "pill or

The basis of the placebo response is not fully
known, but there are thought to be many possible
reasons. These reasons, which relate to attributes of
the disorder or the disease, the patient, and the
treatment setting, include spontaneous remission,
personality variables (e.g., social acquiescence),
patient expectations, attitudes of and compassion
by clinicians, and receiving treatment in a
specialized setting (Schweizer & Rickels, 1997). In
studies of postoperative pain, the placebo response
is mediated by patients' production of endogenous
pain-killing substances known as endorphins
(Levine et al., 1978).

Benefits and Risks

Throughout this report, currently accepted
treatments for mental disorders will be described.
Except where otherwise indicated, the efficacy of
these interventions has been documented in
multiple controlled, clinical trials published in the
peer-reviewed literature. In some cases, these have
been supplemented by expert consensus reports or
practice guidelines.

Most studies of efficacy of specific treatments
for mental disorders have been highly structured
clinical trials, performed on individuals with a
single disorder, in good physical health. While
necessary and important, these trials do not always
generalize easily to the wider population, which
includes many individuals whose mental disorder is
accompanied by another mental or somatic disorder
and/or alcohol or substance abuse, and who may be
taking other medications. Moreover, children,
adolescents, and the elderly are excluded from
many clinical trials,"  as are those in certain
settings, such as nursing homes. Newer, more
generalizable studies are being undertaken to

psychological placebo or to another treatment" (Chambless et al.,
1998).
I7 In March 1998, the NIH issued a policy guideline stating that
NM-funded investigators will be expected to include children in
clinical trials, which normally would involve adults only, when
there is sound scientific rationale and in the absence of a strong
justification to the contrary.

71


Mental Health: A Report of the Surgeon General

address these shortcomings of the scientific
literature (Lebowitz & Rudorfer, 1998).
Pending the results of these newer studies, it is
important, for clinical decisionmakers to review the
current best evidence for the efficacy of treatments.
People with mental disorders and their health
providers should consider all possible options and
carefully weigh the pros and cons of each, as well
as the possibility of no treatment at all, before
deciding upon a course of action. Such an informed
consent process entails the calculation of a
"benefit-to-risk ratio" for each available treatment
option. Most medications or somatic treatments
have side effects, for example, but a likelihood of
significant clinical benefit often overrides side-
effects in support of a treatment recommendation.

Gap Between Efficacy and Effectiveness
Mental health professionals have long observed
that treatments work better in the clinical research
trial setting as opposed to typical clinical practice
settings. The diminished level of treatment
effectiveness in real-world settings is so
perceptible that it even has a name, the "efficacy-
effectiveness gap." Efficacy is the term for what
works in the clinical trial setting, and effectiveness
is the term for what works in typical clinical
practice settings. The efficacy-effectiveness gap
applies to both pharmacological therapies and to
psychotherapies (Munoz et al., 1994; Seligman,
1995). The gap is not unique to mental health, for
it is found with somatic disorders too.
The magnitude of the gap can be surprisingly
high. With schizophrenia medications, one review
article found that, in clinical trials, the use of
traditional antipsychotic  medications for
schizophrenia was associated with an average
annual relapse rate of about 23 percent, whereas the
same medications used in clinical practice carried
a relapse rate of about 50 percent (Dixon et al.,
1995). The magnitude of the gap found in this study
may not apply to other medications and other
`disorders, much less to psychological therapies.
Studies of real-world effectiveness are scarce. Yet

some degree of gap is widely recognized. The
question is, why?

Efficacy studies test whether treatment works
under ideal circumstances. They typically exclude
patients with other mental or somatic disorders. In
the past, they typically have examined relatively
homogeneous populations, usually white males.
Furthermore, efficacy studies are carried out by
highly trained specialists following strict protocols
that require frequent patient monitoring. Finally,
participation in efficacy studies is often free of
charge to patients.

  It is not surprising that the reasons commonly
cited to explain the discrepancy between efficacy
and effectiveness focus on the practicalities and
constraints imposed by the real world. In real-world
settings, patients often are more heterogeneous and
ethnically diverse, are beset by comorbidity (more
than one mental or somatic disorder),i8 are often
less compliant, and are seen more often in general
medical rather than specialty settings; providers are
less inclined to adequately monitor and standardize
treatment; and cost pressures exist on both patients
and providers, depending on the nature of the
financing of care (Dixon et al., 1995; Wells &
Sturm, 1996). This constellation of real-world
constraints appears to explain the gap.

Barriers to Seeking Help

Most people with mental disorders do not seek
treatment, according to figures presented in the
next section of this chapter and in Chapter 6. This
general statement applies to adults and older adults
and to parents and guardians who make treatment
decisions for children with mental disorders. There
is a multiplicity of reasons why people fail to seek
treatment for mental disorders but few detailed
studies. The barriers to treatment fall under several
umbrella categories: demographic factors, patient
attitudes toward a service system that often

I* Having a second disorder increases the possibility of drug
interactions, which may translate into reduced dosing. Comorbidity
is discussed throughout this report.


neglects the special needs of racial and ethnic
minorities, financial, and organizational.
Several demographic factors predispose people
against seeking treatment. African Americans,
Hispanics (Sussman et al., 1987; Gallo et al.,
1995), and poor women (Miranda & Green, 1999)
are less inclined than non-Hispanic
whites-particularly females-to seek treatment.
Common patient attitudes that deter people from
seeking treatment are not having the time, fear of
being hospitalized, thinking that they could handle
it alone, thinking that no one could help, and
stigma (being too embarrassed to discuss the
problem) (Sussman et al., 1987). Above all, the
cost of treatment is the most prevalent deterrent to
seeking care, according to a large study of
community residents (Sussman et al., 1987). Cost
is a major determinant of seeking treatment even
among people with health insurance because of
inferior coverage of mental health as compared
with health care in general. Finally, the
organizational barriers include fragmentation of
services and lack of availability of services
(Horwitz, 1987). Members of racial and ethnic
minority groups often perceive that services offered
by the existing system do not or will not meet their
needs, for example, by taking into account their
cultural or linguistic practices. These particular
barriers are discussed in greater depth with respect
to minority groups (later in this chapter) and with
respect to different ages (Chapters 3 to 5).
  Demographic, attitudinal, financial, and
organizational barriers operate at various points
and to various degrees. Seeking treatment is
conceived of as a complex process that begins with
an individual or parent recognizing that thinking,
mood, or behaviors are unusual and severe enough
to require treatment; interpreting symptoms as a
"medical" or mental health problem; deciding
whether or not to seek help and from whom;
receiving care; and, lastly, evaluating whether
continuation of treatment is warranted (Sussman et
al., 1987).

Overview of Mental Health Services
Over the past three centuries, the complex
patchwork of mental health services in the United
States has become so fragmented that it is referred
to as the defacto menraE health system (Regier et
al., 1993b). Its shape has been determined by many
heterogeneous factors rather than by a single
guiding set of organizing principles. The de facto
system has been characterized as having distinct
sectors, financing, duration of care, and settings
(see Figure 2-4).

The four sectors of the system are the specialty
mental health sector, the geberal medical/primary
care sector, the human services sector, and the
voluntary support network sector. Specialty mental
health services include services provided by
specialized mental health professionals (e.g..
psychologists, psychiatric nurses, psychiatrists, and
psychiatric social workers) and the specialized
offices, facilities, and agencies in which they work.
Specialty services were designed expressly for the
provision of mental health services. The general
medical/primary care sector consists of health care
professionals (e.g., family physicians, nurse
practitioners, internists, pediatricians, etc.) and
the settings (i.e., offices, clinics, and hospitals) in
which they work. These settings were designed for
the full range of health care services, including, but
not specialized for, the delivery of mental health
services. The human services sector consists of
social welfare, criminal justice, educational,
religious, and charitable services. The voluntary
support network refers to self-help groups and
organizations. These are groups devoted to
education, communication, and support, all of
which extend beyond formal treatment.
Financing of the de facto system refers to the
payer of services. The system is often described as
being divided into a public (i.e., government) and
a private sector. 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

The Fundamentals of Mental Health and Mental Illness

73


Mental Health: A Report of the Surgeon General

Figure 2-4. The mental health service system

ical/Primafy Care
ces . -(
pport Network J i .- '

(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 retired 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).
  The duration of care is divided between
services for the treatment of acute conditions and
those devoted to the long-term care of chronic (i.e.,
severe and persistent) conditions, such as
schizophrenia, bipolar disorder, and Alzheimer's
disease. The former, provided in psychiatric
hospitals, psychiatric units in general hospitals, and
in beds "scattered" in general hospital wards,

includes brief treatment-oriented services. Long-
term care includes residential care as well as some
treatment services. Residential care is often
referred to as "custodial," when supervised living
predominates over active treatment.
The settings for care and treatment include
institutional, community-based, and home-based.
The former refers to facilities, particularly public
mental hospitals and nursing homes, which usually
are seen by patients and families as large,
regimented, and impersonal. They often are
removed from the community by distance and
frequency of contact with friends and family. In
contrast, community-based services are close to
where patients or clients live. Services are typically
provided by community agencies and organizations.
Home-based services include informal supports
provided in an individual's residence.

74


The Fundamentals of Mental Health and Mental Illness

Chapter 6 examines the impact of recent
changes in financing and organizing services on
access and quality of care. Many of these issues
also are addressed in Chapters 3 to 5, where they
are discussed in the context of care and treatment at
each stage of the life cycle. The following material
provides general information on current patterns of
use and focuses on the historical origins of mental
health services.

Overall Patterns of Use

According to recent national surveys (Regier et al,
1993b; Kessler et al., 1996), a total of about 15
percent of the U.S. adult population use mental
health services in any given year. Eleven percent
receive their services from either the general
medical care sector or the specialty mental health
sector, in roughly equal proportions. In addition,
about 5 percent receive care from the human
services sector, and about 3 percent receive care
from the voluntary support network. (The overlap
across these latter two sectors accounts for these
figures totaling more than 15 percent.)
Slightly more than half of the 15 percent of the
adult population that use mental health services
have a diagnosable mental or addictive disorder (8
percent), while the remaining portion has a mental
health problem (7 percent). Bearing in mind that 28
percent of the population have a diagnosable
mental or substance abuse disorder, only about
one-third with a diagnosable mental disorder
receives treatment in 1 year (Figure 2-5). In short,
this transjates to the majority of those with
a diagnosable mental disorder not receiving
treatment.

Similarly, about 21 percent of the child and
adolescent population use mental health services
annually. Nine percent ieceive care from the health
care sector, almost exclusively from the specialty
mental health sector. Seventeen percent of the child
and adolescent population receive care from the
human services sector, mostly in the school system,
yet there is much overlap with the health sector
(again accounting for the sum being more than 21

percent). The distribution of those who do and do
not currently meet diagnostic criteria for. a mental
disorder is similar to that for adults (Figure 2-6).

History of Mental Health Services
The history of mental health services in the United
States has been chronicled by historian Gerald N.
Grob in a series of landmark books from which this
account is drawn (Grob, 1983, 1991, 1994). The
origins of the mental health services system
coincide with the colonial settlement of the United
States. Individuals with mental illness were cared
for at home until urbanization induced state
governments`to confront a problem that had been
relegated largely to families. The states' response
was to build institutions, known first as asylums
and later as mental hospitals. When the
Pennsylvania Hospital opened in Philadelphia in
the mid- 18th century, it had provisions for
individuals with mental illness housed in its
basement: Also in the mid-18th century, colonial
Virginia was the first state to build an asylum for
mentally ill citizens, which it constructed in its
capital at Williamsburg. If not cared for at home or
in asylums, those with mental illness were likely to
be found in jails, almshouses, work houses, and
other institutions. By the time of the Revolutionary
War, the beginnings were in place for each of the
four sectors of the de facto mental health system.
  The origins of treatment for mental illness in
the general medical/primary care sector can be
traced to the Pennsylvania Hospital. The origins of
specialty mental health care can be traced to the
Williamsburg asylum. Home care, the most
common response to mental illness, probably
became a part of the voluntary support network,
whereas the human services sector was by far the
most common organized or institutional response,
by placing individuals in almshouses (homes for
the poor) and work houses. The first form of treat-
ment-known as "moral treatment"-was not given
until the very end of the 18th century, after the
Revolutionary War.

75


Mental Health: A Report of the Surgeon General

Figure 2-5a. Annual prevalence of mental/addictive disorders and services for adults

Percent of Population (28%) With
Mental/Addictive Disorders
     (in one year)

Percent of Population (15%) Receiving
    Mental Health Services*

Diagnosis and
No Treatment
(20%)

Treatment and No Diagnosis,
Other Mental Health Problem
  Inferred 57%)

Diagnosis and Treatment (6%)

Figure 2-5b. Annual prevalence of mentaUaddictive disorders and services for adults

Percent of Population (28%) With            Percent of Population (15%) Receiving
Mental/Addictive Disorders                    Mental Health Services*

(in one year)

Diagnosis and
No Treatment
(20%)

1     (in one year)

Percent of Population Receiving
  Specialty Care (6%)

Percent of Population Receiving
General Medical Care (5%)

   r   Percent of Population Receiving
      Other Human Services and
.       Voluntary Support (4%)

--

--

'

Due to rounding, it appears that 9 percent of the population has a diagnosis and receives treatment. The actual
figure is closer to 6 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

76


The Fundamentals of Mental Health and Mental Illness

Percent of Population (21%) With           Percent of Population (21%) Receiving
MentaVAddictive Disorders                    Mental Health Services
    (in one year)                       (In one yefar)

Figure 2-6a. Annual prevalence of mentapaddictive disorders and servfces for children

Diagnosis and
No Treatment
(11%)

Treatment and No Diagnosis,
Other Mental Health Problem
   Inferred (11%)

Diagnosis and Treatment (10%)

Figure 26b. Annual prevalence of mentaVaddictive disorders and services for children

Percent of Populatlon (21%) With
MentaUAddictlve Dlsorders
    (In one year)

Percent of Populatlon (21%) Receiving
    Mental Health Services

  k   (in one year)

Diagnosis and
No Treatment
(11%)

--.

`9

_------_------- ----
  Percent o! Population Receivir
     Specialty Care (8%)
         -_---_--_---
     rcent of Population Receiving
       General Medical Care (1%)
        ----e--e----

--_

- L -

Percent of Population
Receiving School
Services (11%)

' ~~~~~o~~o~~aiio~~~~ -
     Other Human Services and
      Voluntaw Suooort (1%)
-----------`-AL-L-i

---

o * 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 ???????

Source: Shaffer et al., 1996

77


Mental Health: A Report of the Surgeon General

  An era of "moral treatment" was introduced
from Europe at the turn of the 19th century,
representing the first of four reform movements in
mental health services in the United States
(Morrissey & Goldman, 1984; Goldman &
Morrissey, 1985) (Table 2-10).
The first reformers, including Dorothea Dix and
Horace Mann, imported the idea that mental illness
could be treated by removing the individual to an
asylum to receive a mix of somatic and psychosoci-
al treatments in a controlled environment
characterized by "moral" sensibilities, The term
"moral" had a connotation different from that of
today. It meant the return of the individual to
reason by the application of psychologically
oriented therapy" (Grob, 1994). The "moral treat-
ment" period was characterized by the building of
private and public asylums. Almost every state had
an asylum dedicated to the early treatment of
mental illness to restore mental health and to keep
patients from becoming chronically ill. Moral
treatment accomplished the former objective, but it
could not prevent chronicity.

Shortly after the Civil War, the failures of the
promise of early treatment were recognized and
asylums were built for untreatable, chronic
patients. The quality of care deteriorated in public
institutions, where overcrowding and underfunding
ran rampant. A new reform movement, devoted to
"mental hygiene," began late in the 19th century. It
combined the newly emerging concepts of public
health (which at the time was referred to as
"hygiene"),  scientific medicine,  and social
progressivism. Although the states built the public
asylums, local government was expected to pay for
each episode of care. To avoid the expense, many
communities continued to use local almshouses and
jails. Asylums could not maintain their budgets,
care deteriorated, and newspaper exposes revealed
inhuman conditions both in asylums and local

I9 According to a student of the originator of moral treatment,
Philippe Pinel, "moral treatment is the application of the faculty of
intelligence and of the emotions in the treatment of mental
alienation" (Grob, 1994).

welfare institutions. State Care Acts were passed
between 1894 and World War I. These acts
centralized financial responsibility for the care of
individuals with mental illness in every state
government.  Local government took the
opportunity to send everyone with a mental illness,
including dependent older citizens, to the state
asylums. Dementia was redefined as a mental
illness, although only some of the older residents
were demented. For the past century the states have
carried this responsibility at very low cost, in spite
of the magnitude of the task.

The reformers of the "mentaihygiene" period,
who formed the National Committee on Mental
Hygiene (now  the National Mental Health
Association [NMHA]), called for an expansion of
the new science, particularly of neuropathology, in
asylums, which were renamed mental hospitals.
They also called for "psychopathic hospitals and
clinics" to bring the new science to patients in
smaller institutions associated with medical
schools. They opened several psychiatric units in
general hospitals to move mental health care into
the mainstream of health care. The mental
hygienists believed in the principles of early
treatment and expected to prevent chronic mental
illness. To support this effort, they advocated for
outpatient treatment to identify early cases of
mental disorder and to follow discharged
inpatients.

Treatments were not effective. Early treatment
was no more successful in preventing patients from
becoming chronically ill in the early 20th century
than it was in the early years of the previous
century. At best, the hospitals provided humane
custodial care; at worst, they neglected or abused
the patients. Length of stay did begin to decline for
newly admitted inpatients, but older, long-stay
patients filled public asylums. The financial
problems and overcrowding deepened during the
Depression and during World War II.

Enthusiasm for early interventions, developed
by military mental health services during World
War II, brought a new sense of optimism about

78


The Fundamentals of Mental Health and Mental Illness

Table 2-10. Historical reform movements in mental health treatment in the United States

ommunity Mental Health     1955-l 970   Community mental health center  Deinstitutionalization,
                                      social integration
          x -_.  ,< (. . . . ." `,. m__*_ /A"_. *;*s ,    %^ * ,* ,"F,F7F
       *. ,  ". "i,. a. x " --.e 1 ea_-I _.a?;.4a1_  ." 5-r xrr E..,,.r,.*-.a*~
Community Support      1975-present  Community support          Mental illness as a social welfare

Sources: Morrissey & Goldman, 1984; Goldman & Morrissey, 1985

treatment by the middle of the 20th century. Again,
early treatment of mental disorders was
championed and a new concept was born,
"community mental health."- The NMHA figured
prominently in this reform, along with the Group
for the Advancement of Psychiatry. Borrowing
some ideas from the mental hygienists and
capitalizing on the advent of new drugs for treating
psychosis and depression, community mental health
reformers argued that they could bring mental
health services to the public in their communities.
They suggested that long-term instituti'onal care in
mental hospitals had been neglectful, ineffective,
even harmful. The joint policies of "community
care" and "deinstitutionalization" led to dramatic
declines in the length of hospital stay and the
discharge of many patients from custodial care in
hospitals.
  Concomitantly, these policies led to the
expansion of outpatient services in the community,
particularly in federally funded community mental
health centers. Federal legislation beginning in the
mid-1960s fueled this expansion through grants to
centers and then through the inclusion of some
(albeit limited) mental health benefits in Medicare
and Medicaid. The latter was particularly
important, because it stimulated the transfer of
many long-term inpatients from public mental
hospitals to nursing homes, encouraged the opening

of psychiatric units in general hospitals, and
ultimately paid for many rehabilitation services for
individuals with severe and persistent mental
disorders.

  The dual policies of community care and
deinstitutionalization, however, were implemented
without evidence of effectiveness of treatments and
without a social welfare system attuned to the
needs of hundreds of thousands of individuals with
disabling mental illness. Housing, support services,
community treatment approaches, vocational
opportunities, and income supports for those unable
to work were not universally available in the
community. Neither was there a truly welcoming
spirit of community support for "returning" mental
patients. Many discharged mental patients found
themselves in welfare and criminal justice
institutions, as had their predecessors in earlier
eras; some became homeless or lived in regimented
residential (e.g., board and care) settings in the
community.

The special needs of individuals with severe
and persistent mental illness were not being met
(General Accounting Office, 1977; Turner &
TenHoor, 1978). Early treatment did not prevent
disability, although new approaches to treatment
would eventually reduce morbidity and improve
quality of life. A fourth reform era (197%present),
called the "community support" movement, grew

79


Mental Health: A Report of the Surgeon General

directly out of the "community mental health
movement." This new reform movement called for
an end to viewing and responding to chronic mental
disorder only as the object of neglect, by favoring
acute treatment and prevention. Reformers
advocated for developing "community support
systems," with an expanded vision of care and
treatment as encompassing the social welfare needs
of individuals with disabling mental illness. The
emphasis favored the view that individuals could
once again become citizens of their community, if
given support and access to mainstream resources
such as housing and vocational opportunities
(Goldman, 1998). At first, mental health treatments
were deemphasized in favor of social supports, but
newer medications, such as SSRIs and novel anti-
psychotic drugs, and more effective psychosocial
interventions,  such as assertive- community
treatment for schizophrenia (Chapter 4), facilitated
the objectives of community support and recovery
in the community.

The voluntary support network expanded with
an emphasis on "recovery," a concept introduced
by service users, or consumers, who began to take
an active role in their own care and support and in
making policy. From their inception in the late
197Os, family organizations, such as the National
Alliance for the Mentally Ill and the Federation of
Families, advocated for services for individuals
who are most impaired. As discussed later in this
chapter, consumers,  who also call themselves
"survivors," have formed their own networks for
support and advocacy and work with other
advocacy groups such as the National Mental
Health Association and the Bazelon Center for
Mental Health Law.

The de facto mental health system is complex
because it has metamorphosed over time under the
influence of a wide array of factors, including
reform movements and their ideologies, financial
incentives based on who would pay for what kind
of services, and advances in care and treatment
technology. Each factor has been important in its
own way. The hybrid system that emerged serves

many diverse functions. Unfortunately for those
individuals with the most complex needs, and who
often have the fewest financial resources, the
system is fragmented and difficult to use to meet
those needs effectively. Efforts at integrating the
service system and tailoring it to those with the
greatest needs are discussed, by age group, in
subsequent chapters of the report. Many problems
remain, including the lack of health insurance by 16
percent of the U.S. population, underinsurance for
mental disorders even among those who have health
insurance, access barriers to members of many
racial and ethnic groups, discrimiiation, and the
stigma about mental illness, which is one of the
factors that impedes help-seeking behavior.

Overview of Cultural Diversity and
Mental Health Services

The U.S. mental health system is not well equipped
to meet the needs of racial and ethnic minority
populations. Racial and ethnic minority groups are
generally considered to be underserved by the
mental health services system (Neighbors et al.,
1992; Takeuchi & Uehara, 1996; Center for Mental
Health Services [CMHS], 1998). A constellation of
barriers deters ethnic and racial minority group
members from seeking treatment, and if individual
members of groups succeed in accessing services,
their treatment may be inappropriate to meet their
needs.

Awareness of the problem dates back to the
1960s and 197Os, with the rise of the civil rights
and community mental health movements (Rogler
et al., 1987) and with successive waves of
immigration from Central America, the Caribbean,
and Asia (Takeuchi & Uehara, 1996). These
historical forces spurred greater recognition of the
problems that minority groups confront in relation
to mental health services.

Research documents that many members of
minority groups fear, or feel ill at case with, the
mental health system (Lin et al., 1982; Sussman et
al., 1987; Scheffler & Miller, 1991). These groups
experience it as the product of white, European

80


culture, shaped by research primarily on white,
European POpUlatiOUS.  They may find only
clinicians who represent a white middle-class
orientation, with its cultural values and beliefs, as
well as its biases, misconceptions, and stereotypes
of other cultures.

Research and clinical practice have propelled
advocates and mental health professionals to press
for  "linguistically and culturally competent
services" to improve utilization and effectiveness
of treatment for different cultures. Culturally
competent services incorporate respect for and
understanding of, ethnic and racial groups, as well
as their histories, traditions, beliefs, and value
systems (CMHS,  1998). Without culturally
competent services, the failure to serve racial and
ethnic minority groups adequately is expected to
worsen, given the huge demographic growth in
these populations predicted over the next decades
(Takeuchi & Uehara,  1996; CMHS, 1998;
Snowden, 1999).

This section of the chapter amplifies these
major conclusions. It explains the confluence of
clinical, cultural, organizational, and financial
reasons for minority groups being underserved by
the mental health system. The first task, however,
is to explain which ethnic and racial groups
constitute underserved populations, to describe
their changin g demographics, and to define the
term "culture" and its consequences for the mental
health system.

Introduction to Cultural Diversity and
Demographics
The Federal government officially designates four
major racial or ethnic minority groups in the United
States: African American (black), Asian/Pacific
Islander, Hispanic American (Latino),20 and Native
American/American Indian/Alaska Native/Native
Hawaiian (referred to subsequently as "American
Indians") (CMHS, 1998). There are many other

I0 The term "Latino(a)" refers to all persons of Mexican, Puerto
Rican, Cuban, or other Central and South American or Spanish
origin (CMHS. 1998).

racial or ethnic minorities and considerable
diversity within each of thg four groupings listed
above. The representation of the four officially
designated groups in the U.S. population in 1999 is
as follows: African Americans constitute the
largest group,  at 12.8 percent of the U.S.
,population; followed by Hispanics (11.4 percent),
Asian/Pacific Islanders (4.0 percent), and American
Indians (0.9 percent) (U.S. Census Bureau, 1999).
Hispanic Americans are among the fastest-growing
groups. Because their population growth outpaces
that of African Americans, they are projected to be
the predominant minority group (24.5 percent of
the U.S. population) by tGe. year 2050 (CMHS,
1998).

Racial and ethnic populations differ from one
another and from the larger society with respect to
culture. The term "culture" is used loosely to
denote a common heritage and set of beliefs,
norms,  and values. The cultures with which
members of minority racial and ethnic groups
identify often are markedly different from
industrial societies of the West. The phrase
"cultural identity" specifies a reference group-an
identifiable social entity with whom a person
identifies and to whom he or she looks for
standards of behavior (Cooper & Denner, 1998). Of
course, within any given group, an individual's
cultural identity may also involve language,
country of origin, acculturation,2' gender, age,
class,  religious/spiritual  beliefs, sexual
orientation", and physical disabilities (Lu et al.,
1995). Many people have multiple ethnic or
cultural identities.

The historical experiences of ethnic and
minority groups in the United States are reflected

?' Acculturation refers to the "social distance" separating members
of an ethnic or racial group from the wider society in areas of beliefs
and values and primary group relations (work, social clubs, family,
friends) (Gordon, 1964). Greater acculturation thus reflects greater
adoption of mainstream beliefs and practices and entry into primary
group relations.
z Research is emerging on the importance of tailoring services to
the special needs of gay, lesbian, and bisexual mental health service
users (Cabaj & Stein, 1996).

The Fundamentals of Mental Health and Mental Illness

81


Mental Health: A Report of the Surgeon General

in differences in economic, social, and political
status. The most measurable difference relates to
income. Many racial and ethnic minority groups
have limited financial resources. In 1994, families
from these groups were at least three times as likely
as white families to have incomes placing them
below the Federally established poverty line. The
disparity is even greater when considering extreme
poverty-family incomes at a level less than half of
the poverty threshold-and is also large when
considering children and older persons (O'Hare,
1996). Although some Asian Americans are
somewhat better off financially than other minority
groups, they still are more than one and a half times
more likely than whites to live in poverty. Poverty
disproportionately affects minority women and
their children (Miranda & Green, 1999). The
effects of poverty are compounded by differences
in total value of accumulated assets, or total wealth
(O'Hare et al., 1991).
  Lower socioeconomic status-in terms of
income, education, and occupation-has been
strongly linked to mental illness. It has been known
for decades that people in the lowest
socioeconomic strata are about two and a half times
more likely than those in the highest strata to have
a mental disorder (Holzer et al., 1986; Regier et al.,
1993b). The reasons for the association between
lower socioeconomic status and mental illness are
not well understood. It may be that a combination
of greater stress in the lives of the poor and greater
vulnerability to a variety of stressors leads to some
mental disorders, such as depression. Poor women,
for example, experience more frequent, threatening,
and uncontrollable life events than do members of
the population at large (Belle, 1990). It also may be
that the impairments associated with mental
disorders lead to lower socioeconomic status
(McLeod & Kessler, 1990; Dohrenwend, 1992;
Regier et al., 1993b).

Cultural identity imparts distinct patterns of
beliefs and practices that have implications for the
willingness to seek, and the ability to respond to,

mental health services. These include coping styles
and ties to family and community, discussed below.

Coping Styles

Cultural differences can be reflected in differences
in preferred styles of coping with day-to-day
problems. Consistent with a cultural emphasis on
restraint, certain Asian American groups, for
example, encourage a tendency not to dwell on
morbid or upsetting thoughts, believing that
avoidance of troubling internal events is warranted
more than recognition and outward expression
(Leong & Lau, 1998). They. have little willingness
to behave in a fashion that might disrupt social
harmony (Uba, 1994). Their emphasis on willpower
is similar to the tendency documented among
African Americans to minimize the significance of
stress and, relatedly, to try to prevail in the face of
adversity through increased striving (Broman,
1996).

Culturally rooted traditions of religious beliefs
and practices carry important consequences for
willingness to seek mental health services. In many
traditional societies, mental health problems can be
viewed as spiritual concerns and as occasions to
renew one's commitment to a religious or spiritual
system of belief and to engage in prescribed
religious or spiritual forms of practice. African
Americans (Broman, 1996) and a number of ethnic
groups (Lu et al., 1995), when faced with personal
difficulties, have been shown to seek guidance from
religious figures.23

   Many people of all racial and ethnic
backgrounds believe that religion and spirituality
favorably impact upon their lives and that well-
being, good health, and religious commitment or
faith are integrally intertwined (Taylor, 1986;
Priest, 1991; Bacote, 1994; Pargament, 1997).
Religion and spirituality are deemed important
because they can provide comfort, joy, pleasure,
and meaning to life as well as be means to deal

u Of the 15 percent of the U.S. population that use mental health
services in a given year, about 2.8 percent receive care only from
members of the clergy (Larson et al., 1988).

82


The Fundamentals of Mental Health and Mental Illness

with death, suffering, pain, injustice, tragedy, and
stressful experiences in the life of an individual or
family (Pargament, 1997). In the family/com-
munity-centered perception of mental illness held
by Asians and Hispanics, religious organizations
are viewed as an enhancement or substitute when
the family is unable to cope or assist with the
problem (Acosta et al., 1982; Comas-Diaz, 1989;
Cook & Timberlake, 1989; Meadows, 1997).
Culture also imprints mental health by
influencing whether and how individuals
experience the discomfort associated with mental
illness. When conveyed by tradition and sanctioned
by cultural norms,  characteristic modes of
expressing suffering are sometimes called "idioms
of distress" (Lu et al., 1995). Idioms of distress
often reflect values and themes found in the
societies in which they originate.
  One of the most common idioms of distress is
somatization, the expression of mental distress in
terms of physical suffering. Somatization occurs
widely and is believed to be especially prevalent
among persons from a number of ethnic minority
backgrounds (Lu et al., 1995). Epidemiological
studies have confirmed that there are relatively
high rates of somatization among African
Americans (Zhang & Snowden, in press). Indeed,
somatization resembles an African American folk
disorder identified in ethnographic research and is
linked to seeking treatment (Snowden, 1998).
  A number of idioms of distress are well
recognized as culture-bound syndromes and have
been included in an appendix to DSM-IV. Among
culture-bound syndromes found among some Latin0
psychiatric patients is ataque de nervios, a
syndrome of "uncontrollable shouting, crying,
trembling, and aggression typically triggered by a
stressful event involving family. . . " (Lu et al.,
1995, p. 489). A Japanese culture-bound syndrome
has appeared in that country's clinical modification
of ICD-10 (WHO Znternafional Classification of
Diseases, 10th edition, 1993). Taijin kyofusho is an
intense fear that one's body or bodily functions
give offense to others. Culture-bound syndromes

sometimes reflect comprehensive systems of belief,
typically emphasizing a need for a balance between
opposing forces (e.g., yin/yang, "hot-cold" theory)
or the power of supernatural forces (Cheung &
Snowden, 1990). Belief in indigenous disorders and
adherence to culturally rooted coping practices are
more common among older adults and among
persons who are less acculturated. It is not well
known how applicable DSM-IV diagnostic criteria
are to culturally specific symptom expression and
culture-bound syndromes.

Family and Community as Resources
Ties to family and community, especially strong in
African, Latino, Asian, and Native American
communities, are forged by cultural tradition and
by the current and historical need to assist arriving
immigrants, to provide a sanctuary against
discrimination practiced by the larger society, and
to provide a sense of belonging and affirming a
centrally held cultural or ethnic identity.
Among Mexican-Americans (de1 Pinal &
Singer, 1997) and Asian Americans (Lee, 1998)
relatively high rates of marriage and low rates of
divorce, along with a greater tendency to live in
extended family households, indicate an orientation
toward family. Family solidarity has been invoked
to explain relatively low rates among minority
groups of placing older people in nursing homes
(Short et al., 1994).

  The relative economic success of Chinese,
Japanese,  and Korean Americans has been
attributed to family and communal bonds of
association  (Fukuyama, 1995). Community
organizations and networks established in the
United States include rotating credit associations
based on lineage, surname, or region of origin.
These organizations and networks facilitate the
startup of small businesses.

There is evidence of an African American
tradition of voluntary organizations and clubs often
having political, economic, and social functions
and affiliation with religious  organizations
(Milburn & Bowman, 1991). African Americans

83


Mental Health: A Report of the Surgeon General

and other racial and ethnic minority groups have
drawn upon an extended family tradition in which
material and emotional resources are brought to
bear from a number of linked households.
According to this literature, there is "(a) a high
degree of geographical propinquity; (b) a strong
sense of family and familial obligation; (c) fluidity
of household boundaries, with greater willingness
to absorb relatives, both real and fictive, adult and
minor, if need arises; (d) frequent interaction with
relatives;  (e) frequent extended family get-
togethers for special occasions and holidays; and
(f) a system of mutual aid" (Hatchett & Jackson,
1993, p. 92).

Families play an important role in providing
support to individuals with mental health problems.
A strong sense of family loyalty means that, despite
feelings of stigma and shame, families are an early
and important source of assistance in efforts to
cope, and that minority families may expect to
continue to be involved in the treatment of a
mentally ill member (Uba, 1994). Among Mexican
American families, researchers have found lower
levels of expressed emotion and lower levels of
relapse (Karno et al., 1987). Other investigators
have demonstrated an association between family
warmth and a reduced likelihood of relapse (Lopez
et al., in press).

Epidemiology and Utilization of Services
One of the best ways to identify whether a minority
group has problems accessing mental health
services is to examine their utilization of services
in relation to their need for services. As noted
previously, a limitation of contemporary mental
health knowledge is the lack of standard measures
of "need for treatment" and culturally appropriate
assessment tools. Minority group members' needs,
as measured indirectly by their prevalence of
mental illness in relation to the U.S. population,
should be proportional to their utilization, as
measured by their representation in the treatment
population. These comparisons turn out to be
exceedingly complicated by inadequate under-

84

standing of the prevalence of mental disorders
among minority groups in the United States.24
Nationwide studies conducted many years ago
overlooked institutional populations, which are
disproportionately represented by minority groups.
Treatment utilization information on minority
groups in relation to whites is more plentiful, yet,
a clear understanding of health seeking behavior in
various cultures is lacking.

The following paragraphs reveal that disparities
abound in treatment utilization: some minority
groups are underrepresented in ,the outpatient
treatment population while, at the same time,
overrepresented in  the inpatient population.
Possible explanations for the differences in utili-
zation are discussed in a later section.

African Americans

The prevalence of mental disorders is estimated to
be higher among African Americans than among
whites (Regier et al., 1993a). This difference does
not appear to be due to intrinsic differences
between the races; rather, it appears to be due to
socioeconomic differences. When socioeconomic
factors are taken into account, the prevalence
difference disappears. That is, the socioeconomic
status-adjusted rates of mental disorder among
African Americans turn out to be the same as those
of whites. In other words, it is the lower
socioeconomic status of African Americans that
places them at higher risk for mental disorders
(Regier et al., 1993a).

African Americans are underrepresented in
some outpatient treatment populations, but over-
represented in public inpatient psychiatric care in
relation to whites (Snowden & Cheung, 1990;

24 In spring 2000, survey field work begins on an NJMH-funded
study of the prevalence of mental disorders, mental health
symptoms,  and related functional impairments in African
Americans, Caribbean blacks, and non-Hispanic whites. The study
will examine the effects of psychosocial factors and race-associated
stress on mental health, and how coping resources and strategies
influence that impact. The study will provide a database on mental
health, mental disorders, and ethnicity and race. James Jackson,
Ph.D., University of Michigan, is principal investigator.


Snowden, in press-b). Their underrepresentation in
outpatient treatment varies according to setting,
type of provider, and source of payment. The racial
gap between African Americans and whites in
utilization is smallest, if not nonexistent, in com-
munity-based programs and in treatment financed
by public sources, especially Medicaid (Snowden,
1998) and among older people (Padgett et al.,
1995). The underrepresentation is largest in
privately financed care, especially individual
outpatient practice, paid for either by fee-for-
service arrangements or managed care. As a result,
underrepresentation in the outpatient setting occurs
more among working and middle-class African
Americans, who `are privately insured, than among
the poor. This suggests that socioeconomic
standing alone cannot explain the problem of
underutilization (Snowden, i998).

African Americans are, as noted above,
overrepresented in inpatient psychiatric care
(Snowden, in press-b). Their rate of utilization of
psychiatric inpatient care is about double that of
whites (Snowden & Cheung, 1990). This difference
is even higher than would be expected on the basis
of prevalence estimates. Overrepresentation is
found in hospitals of all types except private
psychiatric hospitals.25 While difficult to explain
definitively, the problem of overrepresentation in
psychiatric hospitals appears more rooted in
poverty, attitudes about seeking help, and a lack of
community support than in clinician bias in
diagnosis and overt racism, which also have been
implicated (Snowden, in press-b). This line of
reasoning posits that poverty, disinclination to seek
help, and lack of health and mental health services
deemed appropriate, and responsive, as well as
community support, are major contributors to
delays by African Americans in seeking treatment
until symptoms become so severe that they warrant
inpatient care.

" African Americans are overrepresented among persons
undergoing involuntary civil commitment (Snowden, in press-b).

The Fundamentals of Mental Health and Mental Illness

Finally, African Americans are more likely than
whites to use the emergency room for mental health
problems (Snowden, in press-a). Their overreliance
on emergency care for mental health problems is an
extension of their overreliance on emergency care
for other health problems. The practice of using the
emergency room for routine care is generally
attributed to a lack of health care providers in the
community willing to offer routine treatment to
people without insurance (Snowden, in press-a).

Asian Americans/Pacific &landers
The prevalence of mental .illness among Asian
Americans  is difficult to determine for
methodological reasons (i.e., population sampling).
Although some studies suggest higher rates of
mental illness, there is wide variance across
different groups of Asian Americans (Takeuchi &
Uehara, 1996). It is not well known how applicable
DSM-IV diagnostic criteria are to culturally
specific symptom expression and culture-bound
syndromes. With respect to treatment-seeking
behavior, Asian Americans are distinguished by
extremely low levels at which specialty treatment
is sought for mental health problems (Leong & Lau,
1998). Asian Americans have proven less likely
than whites, African Americans, and Hispanic
Americans to seek care. One national sample
revealed that Asian Americans were only a quarter
as likely as whites, and half as likely as African
Americans and Hispanic Americans, to have sought
outpatient treatment (Snowden, in press-a). Asian
Americans/Pacific Islanders are less likely than
whites to be psychiatric inpatients (Snowden &
Cheung, 1990). The reasons for the underutilization
of services include the stigma and loss of face over
mental health problems,  limited English
proficiency among  some Asian immigrants,
different cultural explanations for the problems,
and the inability to find culturally competent ser-
vices. These phenomena are more pronounced for
recent immigrants (Sue et al., 1994).

85


Mental Health: A Report of the Surgeon General

Hispanic Americans

Several epidemiological studies revealed few
differences between Hispanic Americans and
whites in lifetime rates of mental illness (Robins &
Regier, 1991; Vega & Kolody, 1998). A recent
study of Mexican Americans in Fresno County,
California, found that Mexican Americans born in
the United States had rates of mental disorders
similar to those of other US. citizens, whereas
immigrants born in Mexico had lower rates (Vega
et al., 1998a). A large study conducted in Puerto
Rico reported similar rates of mental disorders
among residents of that island, compared with those
of citizens of the mainland United States (Canino et
al., 1987).

Although rates of mental illness may be similar
to whites in general, the prevalence of particular
mental health problems, the manifestation of
symptoms, and help-seeking behaviors within
Hispanic subgroups need attention and further
research. For instance, the prevalence of depressive
symptomatology is higher in Hispanic women
(46%) than men (almost 20%); yet, the known risk
factors do not totally explain the gender difference
(Vega et al., 1998a; Zunzunegui et al., 1998).
Several studies indicate that Puerto Rican and
Mexican American women with depressive
symptomatology are underrepresented in mental
health services and overrepresented in general
medical services (Hough et al., 1987; Sue et al.,
1991, 1994; Duran, 1995; Jimenez et al., 1997).

Native Americans

American Indians/Alaska Natives have, like Asian
Americans and Pacific Islanders, been studied in
few epidemiological surveys of mental health and
mental disorders. The indications are that
depression is a significant problem in many
American Indian/Alaska Native communities
(Nelson et al., 1992). One study of a Northwest
Indian village found rates of DSM-III-R affective
disorder that were notably higher than rates
reported from national epidemiological studies
(Kinzie et al.,  1992). Alcohol abuse and

dependence appear  also to be especially
problematic, occurring at perhaps twice the rate of
occurrence found in any other population group.
Relatedly, suicide occurs at alarmingly high levels.
(Indian Health Service, 1997). Among Native
American veterans, post-traumatic stress disorder
has been identified as especially prevalent in
relation to whites (Manson, 1998). In terms of
patterns of utilization, Native Americans are
overrepresented in psychiatric inpatient care in
relation to whites, with the exception of private
psychiatric hospitals (Snowden & Cheung, 1990;
                              ,
Snowden, in press-b).

Barriers to the Receipt of Treatment
The underrepresentation in outpatient treatment of
racial and ethnic minority groups appears to be the
result of cultural differences as well as financial,
organizational, and diagnostic factors. The service
system has not been designed to respond to the
cultural and linguistic needs presented by many
racial and ethnic minorities. What is unresolved are
the relative contribution and significance of each
factor for distinct minority groups.

Help-Seeking Behavior

Among adults, the evidence is considerable that
persons from minority backgrounds are less likely
than are whites lo seek outpatient treatment in the
specialty mental health sector (Sussman et al.,
1987; Gallo et al., 1995; Leong & Lau, 1998;
Snowden, 1998; Vega et al., 1998a, 1998b; Zhang
et al., 1998). This is not the case for emergency
department care, from which African Americans
are more likely than whites to seek care for mental
health problems, as noted above. Language, like
economic and accessibility differences, can play an
important role in why people from other cultures do
not seek treatment (Hunt, 1984; Comas-Diaz, 1989;
Cook & Timberlake, 1989; Taylor, 1989).

Mistrust
The reasons why racial and ethnic minority groups
are less apt to seek help appear to be best studied

86


among African Americans. By comparison with
whites, African Americans are more likely to give
the following reasons for not seeking professional
help in the face of depression: lack of time, fear of
hospitalization, and fear of treatment (Sussman et
al., 1987). Mistrust among African Americans may
stem from their experiences of segregation, racism,
and discrimination (Primm et al., 1996; Priest,
199 1). African Americans have experienced racist
slights in their contacts with the mental health
system, called "microinsults" by Pierce (1992).
Some of these concerns are justified on the basis of
research, cited below, revealing clinician bias in
overdiagnosis of schizophrenia and underdiagnosis
of depression among' African Americans.
Lack of trust is likely to operate among other
minority groups, according to research about their
attitudes toward government-operated institutions
rather than toward mental health treatment per se.
This is particularly pronounced for immigrant
families with relatives who may be undocumented,
and hence they are less likely to trust authorities
for fear of being reported and having the family
member deported. People from El Salvador and
Argentina who have experienced imprisonment or
watched the government murder family members
and engage in other atrocities may have an
especially strong mistrust of any governmental
authority (Garcia & Rodriguez, 1989). Within the
Asian community, previous refugee experiences of
groups such as Vietnamese, Indochinese, and
Cambodian immigrants parallel those experienced
by Salvadoran and Argentine immigrants. They,
too, experienced imprisonment, death of family
members or friends, physical abuse, and assault, as
well as new stresses upon arriving in the United
States (Cook & Timberlake, 1989; Mollica, 1989).
  American Indians' past experience in this
country also imparted lack of trust of government.
T.hose living on Indian reservations are particularly
fearful of sharing any information with white
clinicians employed by the government. As with
African Americans, the historical relationship of
forced control, segregation, racism, and

discrimination has affected their ability to trust a
white majority population (Herring, 1994;
Thompson, 1997).

Stigma

The stigma of mental illness is another factor
preventing African  Americans from seeking
treatment, but not at a rate significantly different
from that of whites. Both African American and
white groups report that embarrassment hinders
them from seeking treatment (Sussman et al.,
1987). In general, African Americans tend to deny
the threat of mental illness ind strive to overcome
mental health problems through self-reliance and
determination (Snowden, 1998). Stigma, denial,
and self-reliance are likely explanations why other
minority groups do not seek treatment, but their
contribution has not been evaluated empirically,
owing in part to the difficulty of conducting this
type of research. One of the few studies of Asian
Americans identified the barriers of stigma,
suspiciousness, and a lack of awareness about the
availability of services (Uba, 1994). Cultural
factors tend to encourage the use of family,
traditional healers, and informal sources of care
rather than treatment-seeking behavior, as noted
earlier.

Cost

Cost is yet another factor discouraging utilization
of mental health services (Chapter 6). Minority
persons are less likely than whites to have private
health insurance, but this factor alone may have
little bearing on access. Public sources of insurance
and publicly supported treatment programs fill
some of the gap. Even among working class and
middle-class African Americans who have private
health insurance, there is underrepresentation of
African Americans in outpatient treatment
(Snowden, 1998). Yet studies focusing only on
poor women, most of whom were members of
minority groups, have found cost and lack of
insurance to be barriers to treatment (Miranda &
Green, 1999). The discrepancies in findings suggest

The Fundamentals of Mental Health and Mental Illness

87


Mental Health: A Report of the Surgeon General

that much research remains to be performed on the
relative importance of cost, cultural, and
organizational barriers, and poverty and income
limitations across the spectrum of racial and ethnic
and minority groups.

CIinician Bias

Advocates and experts alike have asserted that bias
in clinician judgment is one of the reasons for
overutilization of inpatient treatment by African
Americans. Bias in clinician judgment is thought to
be reflected in overdiagnosis or misdiagnosis of
mental disorders. Since diagnosis is heavily reliant
on behavioral signs and patients' reporting of the
symptoms, rather than on laboratory tests, clinician
judgment plays an enormous role in the diagnosis
of mental disorders. The strongest evidence of
clinician bias is apparent for African Americans
with schizophrenia and depression. Several studies
found that African Americans were more likely
than were whites to be diagnosed with
schizophrenia, yet less likely to be diagnosed with
depression (Snowden & Cheung, 1990; Hu et al.,
1991; Lawson et al., 1994).

In addition to problems of overdiagnosis or
misdiagnosis, there may well be a problem of
underdiagnosis among minority groups, such as
Asian Americans, who are seen as "problem-free"
(Takeuchi & Uehara, 1996). The presence and
extent of this type of clinician bias are not known
and need to be investigated.

Improving Treatment for Minority
Groups
The previous paragraphs have documented
underutilization of treatment, less help-seeking
behavior,  inappropriate diagnosis, and other
problems that have beset racial and ethnic minority
groups with respect to mental health treatment.
This kind of evidence has fueled the widespread
perception of mental health treatment as being
uninviting, inappropriate, or not as effective for
minority groups as for whites. The Schizophrenia
Patient Outcome Research Team demonstrated that

African Americans were less likely. than others to
have received treatment that conformed to
recommended practices (Lehman & Steinwachs,
1998). Inferior treatment outcomes are widely
assumed but are difficult to prove, especially
because of sampling, questionnaire, and other
design issues, as well as problems in studying
patients who drop out of treatment after one session
or who otherwise terminate prematurely. In a
classic study, 50 percent of Asian Americans versus
30 percent of whites dropped out of treatment early
(Sue & McKinney, 1975). However, the disparity in
dropout rates may have abated more recently
(O'Sullivan et al., 1989; Snowden et al., 1989).
One of the few studies of clinical outcomes, a pre-
versus post-treatment study, found that African
Americans fared more poorly than did other
minority groups treated as outpatients in the Los
Angeles area (Sue et al., 1991). Earlier studies from
the 1970s and 1980s had given inconsistent results
(Sue et al., 1991).

Ethnopsychopharmacojogy

There is mounting awareness that ethnic and
cultural influences can alter an individual's
responses to medications (pharmacotherapies). The
relatively new field of ethnopsychopharmacology
investigates cultural variations and differences that
influence the effectiveness of pharmacotherapies
used in the mental health field. These differences
are both genetic and psychosocial in nature. They
range from genetic variations in drug metabolism to
cultural practices that affect diet, medication
adherence, placebo effect, and simultaneous use of
traditional and alternative healing methods (Lin et
al., 1997). Just a few examples are provided to
illustrate ethnic and racial differences.
Pharmacotherapies given by mouth usually
enter the circulation after absorption from the
stomach. From the circulation they are distributed
throughout the body (including the brain for
psychoactive drugs) and then metabolized, usually
in the liver, before they are cleared and eliminated
from the body (Brody, 1994). The rate of

88


The Fundamentals of Mental Health and Mental Illness

metabolism affects the amount of the drug in the
circulation. A slow rate of metabolism leaves more
drug in the circulation. Too much drug in the
circulation typically leads to heightened side
effects. A fast rate of metabolism, on the other
hand, leaves less drug in the circulation. Too little
drug in the circulation reduces its effectiveness.
There is wide racial and ethnic variation in drug
metabolism. This is due to genetic variations in
drug-metabolizing enzymes (which are responsible
for breaking down drugs in the liver). These genetic
variations alter the activity of several drug-
metabolizing enzymes. Each drug-metabolizing
enzyme normally breaks down not just one type of
pharmacoiherapy, but usually several types. Since
most of the ethnic variation comes in the form of
inactivation or reduction in activity in the enzymes,
the result is higher amounts -of medication in the
blood, triggering untoward side effects.
For example, 33 percent of African Americans
and 37 percent of Asians are slow metabolizers of
several  antipsychotic  medications  and
antidepressants (such as tricyclic antidepressants
and selective serotonin reuptake inhibitors) (Lin et
al., 1997). This awareness should lead to more
cautious prescribing practices, which usually entail
starting patients at lower doses in the beginning of
treatment. Unfortunately, just the opposite typically
had been the case with African American patients
and antipsychotic drugs. Clinicians in psychiatric
emergency services prescribed more oral doses and
more injections of antipsychotic medications to
African American patients (Segel et al., 1996). The
combination of slow metabolism and overmedica-
tion of antipsychotic drugs in African Americans
can yield very uncomfortable extrapyramidal side
effects (Lin et al., 1997). These are the kinds of
experiences that likely contribute to the mistrust of
mental health services reported among African
Americans (Sussman et al., 1987).

*' Dystonia (brief or prolonged contraction of muscles), akathisia
(an urge to move about constantly), or parkinsonism (tremor and
rigidity) (Perry et al., 1997).

Psychosocial factors also can play an important
role in ethnic variation. Comphance with dosing
may be hindered by communication difficulties;
side effects can be misinterpreted or carry different
connotations; some groups may be more responsive
to placebo treatment; and reliance on psychoactive
traditional and alternative healing methods (such as
medicinal plants  and herbs) may result in
interactions with prescribed pharmacotherapies.
The result could be greater side effects and
enhanced or reduced effectiveness of the
pharmacotherapy, depending on the agents involved
and their concentrations (Lin.et al., 1997). Greater

awareness  of ethnopsychopharmacology is
expected to improve treatment effectiveness for
racial and ethnic minorities. More research is
needed on this topic across racial and ethnic
groups.

Minority-Oriented Services

Through employment of minority practitioners and
the creation of specialized minority-oriented
programs, community-based, publicly supported
mental health programs have achieved greater
minority representation than are found in other
mental health settings (Snowden, 1999). Mental
health care providers who are themselves from
ethnic minority backgrounds are especially likely to
treat ethnic minority clients and have been found to
enjoy good success in retaining them in treatment
(Sue et al., 1991).

The character of the mental health program in
which treatment is provided has proven particularly
important in encouraging minority mental health
service use. Research has shown that programs that
specialize in  serving  identified minority
communities have been successful in encouraging
minorities to enter and remain in treatment (Yeh et
al., 1994; Snowden et al., 1995; Takeuchi et al.,
1995; Snowden & Hu, 1996). Modeled on programs
successfully targeting groups of recent immigrants
and refugees, minority-oriented programs appear to
succeed by maintaining active, committed
relationships with community institutions and

89


Mental Health: A Report of the Surgeon General

leaders and making aggressive outreach efforts; by
maintaining a familiar and welcoming atmosphere;
and by identifying and encouraging styles of
practice best suited to the problems particular to
racial and ethnic minority group members. A
challenge for such programs is to meet specialized
sociocultural needs for clients from various
backgrounds. The track record of minority-oriented
programs at improving treatment outcomes is not
yet clear for adults but appears to be positive for
children and adolescents (Yeh et al., 1994).
There is a specialized system of care for Native
Americans that provides mental health treatment.
The Indian Health Service (IHS) includes a Mental
Health Programs Branch; it offers mental health
treatment intended to be culturally appropriate.
Urban Indian Health Programs also provide for
mental health treatment. The IHS Alcohol-
ism/Substance Abuse Program Branch sponsors
services on reservations and in urban communities
through contracts with service providers. Most
mental health programs in the IHS focus on
screening and treatment in primary care settings.
Due to budgetary restraints, IHS is able to provide
only limited medical, including mental health,
coverage of Native American peoples (Manson,
1998).
  Many tribes  have moved toward self-
determination and, as a result, toward assuming
direct control of local programs. When surveyed,
these tribal health programs reported providing
mental health care in a substantial number of
instances, although questions remain about the
nature and scope of services.  Finally, the
Department of Veterans Affairs and many state and
local authorities provide specialized mental health
programming targeting persons of Native American
heritage (Manson, 1998). Little is known about the
levels and types of care provided under any of these
arrangements.

Cultural Competence

Advocates and policymakers have called for all
mental health practitioners to be culturally
competent: to recognize and to respond to cultural
concerns of ethnic and racial groups, including
their histories, traditions, beliefs, and value
systems (CMHS, 1998).

Cultural competence is one approach to helping
mental health service systems and professionals
create better services and ensure their adequate
utilization by diverse populations (Cross et al.,
1989). It is defined as a set of belfaviors, attitudes,
and policies that come together in a system or
agency or among professionals that enables that
system, agency,  or professionals to work
effectively in cross-cultural situations (Cross et al.,
1989). This is especially important because most
mental health providers are not racial and ethnic
minority group members (Hernandez et al., 1998).
Using the term "competence" places the
responsibility on the mental health services
organization and all of its employees, challenging
them all to become part of a process of providing
culturally appropriate services. This approach
emphasizes understanding the importance of
culture and building service systems that recognize,
incorporate, practice, and value cultural diversity.

There is no single prescribed method for
accomplishing cultural competence. It begins with
respect, and not taking an ethnocentric perspective
about behavior, values, or beliefs. Three possible
methods are to render mainstream treatments more
inviting and accessible to minority groups through
enhanced communication and greater awareness; to
select a traditional therapeutic approach according
to the perceived needs of the minority group; or to
adapt available therapeutic approaches to the needs
of the minority group (Rogler et al., 1987). One
effort to promote cultural competence has been
directed toward mental health services systems
and programs.  The Center for Mental Health
Services has developed, with national input, a
preliminary set of performance indicators for
"cultural competence" by which service and

90


funding organizations might be judged. Cultural
competence in this context includes consultation
with cross-cultural experts and training of staff, a
capacity to provide services in languages other than
English, and the monitoring of caseloads to ensure
proportional racial and ethnic representation. The
ultimate test of any performance indicator will be
documented by improvements in care and treatment
of ethnic and racial minorities.
Another response  has been to develop
guidelines that more directly convey variations
believed necessary in the course of clinical
practice. An appendix to DSM-IV presents
clinicians with an Outline for Cultural Formulation.
The guidelines are intended as a supplement to
standard diagnosis, for use in multicultural environ-
ments and for the provision of a "systematic review
of the individual's cultural background, the role of
the cultural context in the expression and
evaluation of symptoms and dysfunction, and the
effect that cultural differences may have on the
relationship between the individual and the
clinician" (DSM-IV).

  The Outline for Cultural Formulation covers
several areas. It calls for an assessment of cultural
identity, including degree of involvement with
alternative cultural reference groups; cultural
explanations of illness; cultural factors related to
stresses, supports, and level of functioning and
disability (e.g., religion, kin networks); differences
in culture or social status between patient and
clinician and possible barriers (e.g., communi-
cation, trust); and overall cultural assessment.
Others have focused attention on the process by
which mental health practitioners must engage,
assess, and treat patients and on understanding how
cultural differences might affect that process
(Lopez et al., in press). Viewed from this
perspective, the task is to maintain two points of
view-that of the cultural group and that of
evidence-based mental health practice-and
strategically integrate them with the aim of valuing
and utilizing culture, context, and practice in a way
that promotes mental health.

The Fundamentals of Mental Health and Mental Illness

This capacity has a dual advantage. The
practitioner comes to understand the problem as it
is experienced and understood by the patient and,
in so doing, gains  otherwise inaccessible
information on personal and social reality for the
`patient, as well as a sense of trust and credibility.
At the same time the practitioner is able to plan for
and implement an appropriate intervention. It is
through a facility and a willingness to switch from
a professional orientation to that of the client and
his or her cultural group that the clinician is best
able to implement guidelines for cultural
competence such as those specified in DSM-IV
(Mezzich et al., 1996).

In the end, to be culturally competent is to
deliver treatment that is equally effective to all
sociocultural groups. The treatments provided must
not only be efficacious (based on clinical research),
but also effective in community delivery. The
delivery of effective treatments is complicated
because most research on efficacy has been
conducted on predominantly white populations.
This suggests the importance of both efficacy and
effectiveness studies on racial and ethnic
minorities.

At present, there is scant knowledge about
treatment effectiveness according to race, culture,
or ethnicity (Snowden & Hu, 1996). Rarely has
research evaluating standard forms of treatment
examined differential effectiveness. In fact, the
American Psychological Association's Division of
Clinical Psychology Task Force, which tried to
identify the efficacy of different psychotherapeutic
treatments, could not find a single rigorous study of
treatment efficacy published on ethnic minority
clients (Chambless et al., 1996). Nor have studies
been carried out on the efficacy of proposed
cultural adaptations of treatment in comparison
with standard alternatives. Only as more knowledge
is gained will it become possible to mount a full-
fledged and appropriate response to racial and
ethnic differences in the provision of mental health

care.

91


Mental Health: A Report of the Surgeon General

Rural Mental Health Services
The differences between rural and urban communi-
ties present another source of diversity in mental
health services. People in rural America encounter
numerous barriers to the receipt of effective
services. Some barriers are geographic, created by
the problem of delivering services in less densely
populated rural areas and even more sparsely
populated frontier areas. Some barriers are
"cultural," insofar as rural America reflects a range
of cultures and life styles that are distinct from
urban life. Urban culture and its approach to
delivering mental health services dominate mental
health services (Beeson et al., 1998).
  Rural America is shrinking in size and political
influence (Danbom, 1995; Dyer, 1997). As a
consequence, rural mental health services do not
figure prominently in mental health policy (Ahr &
Holcomb, 1985; Kimmel, 1992). Furthermore, rural
economies are in decline, and the population is
decreasing in most areas (yet expanding rapidly in
a few boom areas) (Hannan, 1998). Rural America
is no longer a stable or homogeneous environment.
The farm crisis of the 1980s unleashed a period of
economic hardship and rapid social change,
adversely affecting the mental health of the
population (Ortega et al., 1994; Hoyt et al., 1995).
  Policies and programs designed for urban
mental health services often are not appropriate for
rural mental health services (Beeson et al., 1998).
Beeson and his colleagues (1998) list a host of
important differences that should be considered in
designing rural mental health services. In an era of
specialized services, rural mental health relies
heavily on primary medical care and social
services. Stigma is particularly intense in rural
communities, where anonymity is difficult to
maintain (Hoyt et al., 1997). In an era of expanding
private mental health services, rural mental health
services have been predominantly publicly funded.
Consumer and family involvement in advocacy,
characteristic of urban and suburban areas, is rare
in rural America. The supply of services and
providers is limited, so choice is constrained.

Mental health services in rural areas cannot achieve
certain economies of scale, and some state-of-the
art services (e.g., assertive community treatment)
are inefficient to deliver unless there is a critical
mass of patients. Informal supports and indigenous
healers assume more importance in rural mental
health care.

Rural mental health concerns are being raised
nationally (Rauch, 1997; Ciarlo, 1998; Beeson et
al., 1998). Model programs offer new designs for
services (Mohatt & Kirwan, 1995), particularly
through the integration of mental health and
primary care (Bird et al., 1995, 1998; Size, 1998).
Newer technology,  such as advanced tele-
communications in the form of "telemental health,"
may improve rural .access to expertise from
professionals located in urban areas (Britain, 1996;
La Mendola, 1997; Smith & Allison, .1998).
Internet access, videoconferencing, and various
computer applications offer an opportunity to
enhance the quality of care in rural mental health
services.

Overview of Consumer and Family
Movements

Since the late 197Os, mental health services
continue to be transformed by the growing
influence of consumer and family organizations
(Lefley, 1996). Through strong advocacy, consumer
and family organizations have gained a voice in
legislation and policy for mental health service
delivery. Organizations representing consumers and
family members,  though divergent in their
historical origins and philosophy, have developed
some important, overlapping goals: overcoming
stigma and preventing discrimination, promoting
self-help groups, and promoting recovery from
mental illness (Frese, 1998).

This section covers the history, goals, and
impact of consumer and family organizations,
whereas the next section covers the process of
recovery from mental illness. With literally
hundreds of grassroots consumer organizations
across the United States, no single organization


The Fundamentals of Mental Health and Mental Illness

speaks for all consumers or all families. In fact,
even the term "consumer" is not uniformly
accepted. Despite the heterogeneity, these
organizations typically offer some combination of
advocacy and self-help groups (Lefley, 1996).
Many users of mental health services refer
to themselves as "consumers." The lexicon is
complicated by objections to the term "consumer."
To some, being a consumer erroneously signifies
that service users have the power to choose services
most suitable to their needs. Those who object
contend that consumers have neither choices,
leverage, nor power to select services. Instead,
some consumers refer to themselves as "surviv&s"
or "ex-patients" to denote that they have survived
what they experienced as oppression by the mental
health system (Chamberlin & Rogers, 1990). This
distinction can best be understood in its historical

context.

Origins and Goals of Consumer Groups
The consumer movement arose as a protest in the
1970s by former patients of mental hospitals. Their
antecedents trace back to the 19th century, when a
handful of individuals recovered enough to write
exposCs expressing their outrage at the' indignities
and abuses inside mental hospitals. The most
persuasive former patient was Clifford Beers,
whose classic book, A Mind That Found Itself
(1908), galvanized the mental hygiene reform
movement (Grab, 1994). Beers was among the
founders of the National Committee on Mental
Hygiene, an advocacy group that later was renamed
the National Mental Health Association. This group
focuses on linking citizens and mental health
professionals in broad-based prevention of mental
illness.

  With the advent of deinstitutionalization in the
195Os, increasing numbers of former patients of
mental hospitals began to forge informal ties in the
community. By the 196Os, the civil rights move-
ment inspired former patients to become better
organized into what was then coined the mental
patients' liberation movement (Chamberlin, 1995).

Groups of patients saw themselves as having been
rejected by society and robbed of power and
control over their lives. To surmount what they saw
as persecution, they began to advocate for self-
determination and basic rights (Chamberlin, 1990;
.-Frese & Davis, 1997). The ,posture of these early
groups was decidedly militant against psychiatry,
against laws favoring involuntary commitment, and
often against interventions such as electroconvul-
sive therapy and antipsychotic medications (Lefley,
1996; Frese, 1998). Groups called Alliance for the
Liberation of Mental Patients, the Insane Liberation
Front, and Project Release met in homes and
churches, drawing their membership from those
with firsthand experiences with the mental health
system. Largely unfunded, they sustained their
membership by providing peer support, education
about services in the community, and advocacy to
help members access services and to press for
reforms (Furlong-Norman, 1988).
  The book On Our Own (1978) by former patient
Judi Chamberlin was a benchmark in the history of
the consumer movement. Consumers and others
were able to read in the mainstream press what it
was like to have experienced the mental health
system. For many consumers, reading this book was
the beginning of their involvement in consumer
organizations (Van Tosh & de1 Vecchio, in press).
Early consumer groups, although geographically
dispersed, voluntary, and independent, were linked
through the newsletter Madness Network News,
which continued publication from 1972 to 1986.
During the same era, the Conference on Human
Rights and Against Psychiatric Oppression was
established and met annually from 1973 through
1985 (Chamberlin, 1990). In 1978, early consumer
groups gained what they perceived as their first
official acknowledgment from the highest levels of
government. The President's Commission on
Mental Health stated that ". . . groups composed of
individuals with mental or emotional problems are
being formed all over the United States"
(President's Commission on Mental Health, 1978,
pp. 14-15). To date, racial and ethnic minority

93


Mental Health: A Report of the Surgeon General

group members are underrepresented within the
consumer movement proportionate to their growing
representation in the U.S. population. There is a
need for more outreach and involvement of
consumers representing the special concerns of
racial and ethnic minorities.

The advocacy positions of consumers have
dealt with the role of involuntary treatment, self-
managed care, the role of consumers in research,
the delivery of services, and access to mental health
services. By 1985, consumer views became so
divergent that two groups emerged: The National
Association of Mental Patients*' and the National
Mental Health Consumers' Association. The former
opposed all forms of involuntary treatment,
supported the prohibition of electroconvulsive
therapy, and rejected psychotropic medications and
hospitalization. The latter organization held more
moderate views for improving rather than
eschewing the mental health service system
(Lefley, 1996; Frese, 1998). Both groups eventually
disbanded, but the differences of opinion that they
reflected became deeply entrenched.

Self-Help Groups

Self-help refers to groups led by peers to promote
mutual support, education, and growth (Lefley,
1996). Self-help is predicated on the belief that
individuals who share the same health problem can
help themselves and each other to cope with their
condition. The self-help approach enjoys a long
history, most notably with the formation of
Alcoholics Anonymous in 1935 (IOM, 1990). Over
time, the self-help approach has been brought to
virtually every conceivable health condition.
  Since the 197Os, many mental health consumer
groups emphasized self-help as well as advocacy
(Chamberlin, 1995), although to different degrees.
Self-help for recovering mental patients initially
emphasized no involvement with mental health
professionals. Over time the numbers and types of

" Later renamed the Nationa
(Chamberlin. 1995).

ivors

self-help groups began to flourish and more
moderate viewpoints became represented. Self-help
groups assume three different postures toward
health professionals: the separatist model, the
supportive model that allows professionals to aid in
auxiliary roles, and partnership models in which
professionals act as leaders alongside patients
(Chamberlin, 1978; Emerick, 1990). The focus of
groups varies, with some groups united on the basis
of diagnosis, such as Schizophrenics Anonymous
and the National Depressive and Manic-Depressive
Association, whereas others are more broad based.
  Chamberlin's influential book and another book
by former patients, Reaching Across (Zinman et al.,
1987), explained to consumers how to form self-
help groups. These books also extended the concept
of self-help more broadly into the provision of
consumer-run services as alternatives (as opposed
to adjuncts) to mental health treatment (Lefley,
1996).

94

Programs entirely run by consumers include
drop-in centers,  case management programs,
outreach programs, businesses, employment and
housing programs, and crisis services (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 consumers to obtain social support and
assistance with problems. Although research is
limited, the efficacy of consumer-run services is
discussed in Chapter 4.

Consumer positions also are being incorporated
into more conventional mental health services-as
job coaches and case manager extenders, among
others. The rationale for employing consumers in
service delivery- in consumer-run or conventional
programs-is to benefit those hired and those
served. Consumers  who are hired obtain
employment,  enhance self-esteem, gain work
experience and skills, and sensitize other service
providers to the needs of people with mental
disorders. Consumers who are served may be more
receptive to care and have role models engaged in
their care (Mowbray et al., 1996).


Accomplishments of Consumer
Organizations
Consumer organizations have had measurable
impact on mental health services, legislation, and
research. One of their greatest contributions has
been the organization and proliferation of self-help
groups and their impact on the lives of thousands of
consumers of mental health services. In 1993, a
collaborative survey found that 46 state mental
health departments funded 567 self-help groups and
agencies for persons with mental disabilities and
their family members (National Association of
State Mental Health Program Directors, 1993). A
nationwide directory lists all 50 states and the
District of.Columbia as having 235 different mental
health consumer organizations (South Carolina
SHARE, 1995).

On a systems level, the consumer movement has
substantially influenced mental health policy to
tailor services to consumer needs. This influence is
described by consumers and researchers as
"empowerment."  A concept from the social
sciences, empowerment has come to be defined by
mental health researchers as "gaining control over
one's life in influencing the organizational and
societal structures in which one lives" (Segal et al.,
1995).

Consumers are now involved in all aspects of
the planning, delivery, and evaluation of mental
health services, and in the protection of individual
rights. One prominent example is the passage of
Public Law 102-321, which established mental
health planning councils in every state. Planning
councils are required to have membership from
consumers and families. Having a planning council
so constituted is required for the receipt of Federal
block grant funds for mental health services. Other
Federal legislation required the establishment of
protection and advocacy agencies for patients'
rights in every state (Chamberlin & Rogers, 1990;
Lefley, 1996).

Another significant development has been the
establishment of offices of consumer affairs in
many state mental health authorities. Offices of

The Fundamentals of Mental Health and Mental Illness

consumer affairs are  generally staffed by
consumers to support consumer empowerment and
self-help in their particular states, A recent survey
of state mental health authorities identified 27
states as having paid positions for consumers in
central offices (Geller et al., 1998). In 1995, the
Federal Center for Mental Health Services hired its
first consumer affairs specialist.
   The consumer movement also has had a
substantial influence on increasing the utilization
of consumers as employees in the traditional mental
health system, as well as in other human service
agencies (Specht, 1988; `U.S. Department of
Education, 1990; Schlageter, 1990; Interagency
Council on the Homeless, 1991). Consumers are
being hired at all levels in the mental health
system, ranging from case manager aides to
management positions in national advocacy
organizations, as well as state and Federal
governmental agencies.

Finally, consumers continue to be involved in
research in several ways: as participants of clinical
research; as respondents who are asked questions
about conditions in their life; as partners in some
aspect of the planning, designing, and conducting
of the research project with professional
researchers in control; and as independent
researchers who conduct, analyze the data, and
publish the results of the research project
(Campbell et al., 1993). The past decade has
witnessed the blossoming of a vibrant consumer
research agenda and the growing belief that
consumer involvement in research and evaluation
holds great promise for system reform, quality
improvement, and outcome measurement (Campbell
et al., 1993; Campbell, 1997). In an effort to
enhance the active role of consumers and others in
the research process, the National Institute of
Mental Health is developing a systematic means of
including public participants in the initial review of
grant applications in the areas of clinical treatment
and services research. This innovation follows up
on a recommendation made by the Institute of

95


Mental Health: A Report of the Surgeon General

Medicine and Committee for the Study of the
Future of Public Health (1988).

Family Advocacy

The family movement has experienced spectacular
growth and influence since its beginnings in the
late 1970s (Lefley,  1996). Although several
advocacy and professional organizations speak to
the needs of families, the family movement is
principally  represented by three large
organizations. They are the National Alliance for
the Mentally Ill (NAMI), the Federation of Families
for Children's Mental Health (FFCMH), and the
National Mental Health Association (NMHA).
NAM1 serves families of adults with chronic mental
illness, whereas the Federation serves children and
youth with emotional, behavioral, or mental
disorders. NMHA serves a broad base of family
members and other supporters of children and
adults with mental disorders and mental health
problems. Though the target populations are
different, these organizations are similar in their
devotion to advocacy, family support, research, and
public awareness.

Fragmentation and lack of availability of
services were motivating forces behind' the
establishment  of the family movement.
Deinstitutionalization, in particular, was a cogent
impetus for the formation of NAMI.
Deinstitutionalization of the mentally ill left
families in the unexpected position of having to
assume care for their adult children, a role for
which they were ill prepared. Another motivating
force behind the family movement was the past
tendency by the mental health establishment to
blame parents for the mental illness in children
(Frese, 1998). The cause of schizophrenia, for
example,  had been attributed to the
"schizophrenogenic mother," who was cold and
aloof, according to a reigning but now discredited
view of etiology. Similarly, parents were viewed as
partly to blame for children with serious emotional
or behavioral disturbances (Melaville & Asayesh
1993; Friesen & Stephens, 1998).

NAM1 was created as a grassroots organization
in 1979 by a small cadre of families in Madison,
Wisconsin. Since then, its membership has
skyrocketed to 208,000 in all 50 states (NAMI,
1999). NAMI's principal goal is to advocate for
impro.ved services for persons with severe and
persistent mental  illness-for example,
schizophrenia and bipolar disorder. Its sole
emphasis on the most severely affected consumers
distinguishes it from most other consumer and
family organizations. Another NAM1 goal is to
transform public attitudes and rtduce stigma by
emphasizing the biological basis of ,serious mental
disorders, as opposed to poor parenting (Frese,
1998; NAMI, 1999). Correspondingly, NAM1
advocates for intensification of research in the
neurosciences. Through state and local affiliates,
NAM1 operates a network of family groups for self-
help and education purposes.

NAMI's accomplishments are formidable. The
organization has become a powerful voice for the
expansion of community-based services to fulfill
the vision of the community support reform
movement. NAM1 has successfully pressed for
Federal legislation for family membership in state
mental health planning boards. It is a prime force
behind congressional legislation for parity in the
financing of mental health services. It also has
made substantial inroads in the training of mental
health professionals to sensitize them to the
predicament of the chronically mentally ill. It has
promoted "psychoeducation," specific information
to family members, usually in small-group settings,
about schizophrenia and about strategies for
dealing with relatives with schizophrenia (Lamb,
1994). Finally, NAM1 has successfully lobbied for
increased Federal research funding, and it has set
up private research foundations (Lefley, 1996).
Similarly, advocacy by parents on behalf of
children with serious emotional or behavioral
disturbances has had a compelling impact.
Advocacy for children was electrified by the
publication  of Jane Knitzer's 1982 book,
Unclaimed Children; shortly afterward, the

96


The Fundamentals of Mental Health and Mental Illness

National Mental Health Association (NMHA)
issued Invisible Children (NMHA, 1983), followed
by A Guide for Advocates to All Systems Failure
(NMHA, 1993). Knitzer chronicled the plight of
families in trying to access care from disparate and
uncoordinated public agencies, many of which
blamed or ignored parents. NMHA, a pioneer in the
mental health advocacy field, assumed a pivotal
role in strengthening the child mental health
movement in the 1980s and early 1990s. Over time,
the Federation of Families for Children's Mental
Health has become another focal point for families,
championing family participation and support in
systems of care and access to services. The
Federation's chapters across the United States offer
self-help, education, and networking (FFCMH,
1999). Through the efforts of these groups and
individuals,  among the- most noteworthy
accomplishments of the family movement has been
the emergence  of family participation in
decisionmaking about care for children, one of the
decisive historical shifts in service delivery in the
past 20 years.

Overview of Recovery
Until recently, some severe mental disorders were
generally considered to be marked by lifelong
deterioration. Schizophrenia, for instance, was seen
by the mental health profession as having a
uniformly downhill course (Harding et al., 1992).
At the beginning of the 20th century, the leading
psychiatrist of the era, Emil Kraepelin, judged the
outcome of schizophrenia to be so dismal that he
named the disorder "dementia praecox," or
premature dementia. Negative conceptions of
severe mental illness, perpetuated in textbooks for
decades by Kraepelin's original writings, dampened
consumers' and families' expectations, leaving
them without hope. A turnabout in attitudes came
as a result of the consumer movement and self-help
activities. They mobilized a shift toward a more
positive set of consumer attitudes and self-
perceptions. Research provided a scientific basis
for and supported a more optimistic view of the

possibility of recovering function (Harding et al.,
1992). Promoting recovery became a rallying point
and common ground for the consumer and family
movements (Frese, 1998).

The concept of recovery is having substantial
impact on consumers and families, mental health
research, and service delivery. Before describing
that impact,  this section first turns to an
introduction and definitions.

Introduction and Definitions
Recovery is a concept introduced in the lay
writings of consumers beginning in the 1980s. It
was inspired by consumers who had themselves
recovered to the extent that they were able to write
about their experiences of coping with symptoms,
getting better, and gaining an identity (Deegan,
1988; Leete, 1989). Recovery also was fueled by
longitudinal research uncovering a more positive
course for a significant number of patients with
severe mental illness (Harding et al., 1992),
although findings across several studies were
variable (Harrow et al., 1997) (see discussion in
Chapter 4).

Recovery is variously called a process, an
outlook, a vision, a guiding principle. There is
neither a single agreed-upon definition of recovery
nor a single way to measure it. But the overarching
message is that hope and restoration of a
meaningful life are possible, despite serious mental
illness (Deegan, 1988; Anthony, 1993; Stocks,
1995; Spaniol et al., 1997). Instead of focusing
primarily on symptom relief, as the medical model
dictates, recovery casts a much wider spotlight on
restoration of self-esteem and identity and on
attaining meaningful roles in society.
Written testimonials by former mental patients
have appeared for centuries. These writings,
according to historian of medicine Roy Porter,
"shore up that sense of personhood and identity
which they feel is eroded by society and
psychiatry" (Porter, 1987). What distinguishes the
contemporary wave of writings is their critical
mass, organizational backing, and freedom of

97


Mental Health: A Report of the Surgeon General

expression from outside the confines of the
institution. Deinstitutionalization, the emergence of
community supports and psychosocial rehabili-
tation, and the growth of the consumer and family
advocacy movements all paved the way for
recovery to take hold (Anthony, 1993).
The concept of recovery continues to be defined
in the writings of consumers (see Figure 2-7).
These lay writings offer a range of possible
definitions, many of which seek to discover
meaning, purpose, and hope from having mental
illness (Lefley, 1996). The definitions do not,
however, imply full recovery, in which full
functioning is restored and no medications are
needed. Instead .they suggest a journey or process,
not a destination or cure (Deegan, 1997). One of
the most prominent professional proponents of
recovery, William A. Anthony, crystallized con-
sumer writings on recovery with the following
definition:

   . . . a person with mental illness can
recover even though the illness is not
  "cured" . . . . [Recovery] is a way of living
a satisfying, hopeful, and contributing life
even with the limitations caused by illness.
Recovery involves the development of new
meaning and purpose in one's life as one
grows beyond the catasrrophic effects of
mental illness (Anthony, 1993).
It is important to point out that consumers see
a distinction between recovery and psychosocial
rehabilitation. The latter, which is discussed more
extensively in Chapter 4, refers to professional
mental health services that bring together
approaches from the rehabilitation and the mental
health fields (Cook et al., 1996). These services
combine pharmacological treatment, skills training,
and psychological and social support to clients and
families in order to improve their lives and
functional capacities. Recovery, by contrast, does
not refer to any specific services. Rather, according
to the writings of pioneering consumer Patricia
Deegan, recovery fefers to the "lived experience"

Figure 2-7. Definitions of recovery from

rfnnrlrmfar writinna
"-.m"w...w, I.. .-...a-

7ecovet-y is a process, a way of life, an attitude,
2nd a way of approaching the day's challenges. It
s not a perfect/y linear process. At times our
:ouee is erratic and we falter, slide back, regroup
2nd start again. . . . The need is to meet the
challenge of the disability and to re-establish a
7ew and valued sense of integrity and purpose
within and beyond the limits of the disability; the
sspiration is to live, work, and love in a community
in which one makes a significant contribution
(Deegan, 1988, p. 15).          .

One of the elements that makes recovery possible
is the regaining of one's belief in oneself
(Chamberlin, 1997, p. 9).

Having some hope is. crucial to recovery; none of
us would strive if we believed it a futile effort. . .I
believe that if we confront our illnesses with
courage and struggle with our symptoms
persistently, we can overcome our handicaps to
live independent/y, learn ski//s, and contribute to
society, the society that has traditionally
abandoned us (Leete, 1989, p. 32).

A recovery paradigm is each person's unique
experience of their road to recovery. . . .My
recovery paradigm included my re-connection
which included the following four key ingredients:
connection, safety, hope, and acknowledgment of
my spiritual se/f (Long, 1994, p. 4).

To return renewed with an enriched perspective 01
the human condition is the major benefit of
recovery. To return at peace, with yourse/( your
experience, your world, and your God, is the majo
joy of recovery (Granger, 1994, p. 10).

of gaining a new and valued sense of self and of
purpose (Deegan, 1988).

Impact of the Recovery Concept
The impact of the recovery concept is felt most by
consumers and families. Consumers and families
are energized by the message of hope and self-
determination. Having more active roles in

98


The Fundamentals of Mental Health and Mental Illness

treatment, research,  social and vocational
functioning,  and personal growth strikes a
responsive cord. Consumers' harboring more
optimistic attitudes and expectations may improve
the course of their illness, based on related research
from the field of psychosocial and vocational
rehabilitation (see Chapter 4). Yet direct empirical
support for the salutary, long-term effect of
positive expectations,  on both consumers and
families, is still in its infancy (Lefley, 1997).
The recovery concept likewise is having a
bearing on mental health research and services.
Researchers are beginning to study consumer
attitudes and behavior to attempt to identify .the
elements contributing to recovery. Though still at
an early stage, research is being driven by
consumer perspectives on recovery. Consumers
assert that the recovery process is governed by
internal factors (their psychological perceptions
and expectations),  external factors (social
supports), and the ability to self-manage care, all of
which interact to give them mastery over their
lives. The first systematic efforts to define
consumer perceptions of recovery was conducted
by consumers. The Well-Being Project, sponsored
by the California Department of Mental Health,
was a landmark effort in which mental health
consumers conducted a multifaceted study to define
and explore factors promoting or deterring the well-
being of persons diagnosed with serious mental
illness (Campbell & Schraiber, 1989). Using
quantitative survey research, focus groups, and oral
histories, Campbell (1993) arrived at a definition of
recovery that incorporates "good health, good food,
and a decent place to live, all supported by an
adequate income that is earned through meaningful
work. We need adequate resources and a satisfying
social life to meet our desires for comfort and
intimacy. Well-being is enriched by creativity, a
satisfying spiritual and sexual life, and a sense of
happiness" (p. 28).
  Through  semistructured  interviews  with
consumers about recovery, a subsequent study
identified the most common factors associated with

their success in dealing with a mental illness. They
included medication, community support/case
management, self-will/self-monitoring, vocational
activity (including school), and spirituality
(Sullivan, 1994). Other researchers, also using
semistructured interviews, suggested that the
rediscovery and reconstruction of a sense of self
were important to recovery (Davidson & Strauss,
1992).

These early forays by researchers set the stage
for consumer-driven research efforts to identify
some of the aspects of recovery. A group of
consumers with consultant'researchers developed
the Empowerment Scale (Rogers et al., 1997). After
testing a 28-item scale on members of six self-help
programs in six states, factor analysis revealed the
underlying dimensions of empowerment to be
(1) self-efficacy-self-esteem; (2) power-powerless-
ness ; (3) community activism; (4) righteous anger;
and (5) optimism-control over the future. Other
instruments,  found to have consistency and
construct validity, are the Personal Empowerment
Scale, the Organizational Empowerment Scale, and
the Extra-Organizational Empowerment Scale
(Segal et al., 1995).

  Mental health services continue to be refined
and shaped by the consumer and recovery
emphasis. The most tangible changes in services
come from assertive community treatment and
psychosocial and vocational rehabilitation, which
emphasize an array of approaches to maximize
functioning and promote recovery. Consumer
interest in self-help and recovery has stimulated the
proliferation of interventions for what has been
called "illness management" or "self-managed
care"  for relapse prevention of psychotic
symptoms. Illness management training programs
now teach individuals to identify early warning
signs of relapse and to develop strategies for their
prevention. All of these transformations in service
delivery and research affirming their benefits are
discussed at length in Chapter 4.

Champions of recovery assert that its greatest
impact will be on mental health providers and the

99


Mental Health: A Report of the Surgeon General

future design of the service system. They envision
services being structured to be recovery-oriented to
ensure that recovery takes place. They envision
mental health professionals believing in and
supporting consumers in their quest to recover. In
a groundbreaking article, William A. Anthony
described recovery as a guiding vision that "pulls
the field of services into the future. A vision is not
reflective of what we are currently achieving, but
of what we hope for and dream of achieving.
Visionary thinking does not raise unrealistic
expectations. A vision begets not false promises but
a passion for what we are doing."

Conclusioris

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 weave 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 science,  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?erm 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.

Effective Treatments. As information accumu-
lates 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 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 investigators 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 neuro-
science" 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

100


been developed in years past. The unswerving goal
of mental health research is to develop and refine
clinical treatments as well as preventive inter-
ventions 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 consider-
ations -of service 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 needs
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

The Fundamentals of Mental Health and Mental Illness

greater coordination among these settings and
systems.

  Consumer and Family Movements. The emerg-
ence 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:
1. The multifaceted complexity of the brain is
fully consistent with the fact that it supports all
behavior and mental life. Proceeding from an
acknowledgment  that all psychological
experiences are recorded ultimately in the brain
and that all psychological phenomena reflect
biological processes, the modern 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.

101


Mental Health: A Report of the Surgeon General

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.

4. 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 psycho-
social treatments-for example, psycho-
therapy or counseling-and psychopharma-
cologic 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) and/or 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
uses mental health services in the health sector
in any year, with another 5 percent seeking
such services from social service agencies,
schools, religious, or self-help groups. Yet
critical gaps exist between those who need

9.




10.

service and those who receive service.
Gaps also exist between optimally effective
treatment and what many individuals receive in
actual practice settings.
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
approach 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 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-

102


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 re-
sponds-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 pro-
nounced. 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

The Fundamentals of Mental Health and Mental Illness

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

103


Mental Health: A Report of the Surgeon General

combination of genetic and environmental factors,
which may be biological or psychosocial.
The fact that many, if not most, people have
experienced mental health problems that mimic or
even match some of the symptoms of a diagnosable
mental disorder tends, ironically, to prompt many
people to underestimate the painful, disabling
nature of severe mental illness.  In fact,
schizophrenia, mood disorders such as major
depression and bipolar illness, and anxiety often
are devastating conditions. Yet relatively few
mental illnesses have an unremitting course marked
by the most acute manifestations of illness; rather,
for reasons that are not yet understood, the
symptoms assqciated 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 the 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 neces-
sarily the proportion-of persons experiencing
mental disorders of late life will expand, confront-
ing 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 supporting the increasingly more prominent role
that families are assuming in caring for older,
mentally impaired and mentally ill family members.

References

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116


           CHAPTER 3
CHILDREN AND MENTAL HEALTH

Contents

Normal Development  ...........................................................  124
TheoriesofDevelopment  .....................................................  124
   Development Viewed as a Series of Stages  .....................................  125
   Intellectual Development  ..................................................  125
   BehavioralDevelopment  ..................................................  125
SocialandLanguageDevelopment   ............................................  125
   Parent-Child Relationships .................................................  125
   OriginsofLanguage ......................................................  126
   Relationships With Other Children  ..........................................  126
Temperament  .................. . ...........................................  127
Developmental Psychopathology  ...............................................  127
   Current Developmental Theory Applied to Child Mental Health and Illness  ..........  127

Overview of Risk Factors and Prevention ............................................  129

  RiskFactors  ...............................................................  129
   Biological Influences on Mental Disorders  ....................................  129
   PsychosocialRiskFactors  .................................................  130
   FamilyandGeneticRiskFactors  ............................................  131
   Effects of Parental Depression ..............................................  13 1

    Stressful Life Events  .....................................................  13 1

    ChildhoodMaltreatment  ..................................................  132
   PeerandSiblingInfluences  ................................................  132
   Correlations and Interactions Among Risk Factors  ..............................  132

  Prevention .................................................................  132
   ProjectHeadStart  .......................................................  133
   Carolina Abecedarian Project  ..............................................  134
   Infant Health and Development Program ......................................  134


Contents, continued

Elmira Prenatal/Early Infancy Project  ........................................ 134
Primary Mental Health Project .............................................. 135
Other Prevention Programs and Strategies  ..................................... 136

Overview of Mental Disorders in Children   .......................................... 136
General Categories of Mental Disorders of Children  ................................ 136
Assessment and Diagnosis  .................................................... 137

  EvaluationProcess  .......................................................... 138
Treatment Strategies  ......................................................... 139
   Psychotherapy ........................................................... 140
   Psychopharmacology  ..................................................... 140

Attention-Deficit/Hyperactivity Disorder  ............................................ 142

    Prevalence .............................................................. 144

    Causes.. ............................................................... 144

  Treatment .................................................................. 146
   Pharmacological Treatment  ................................................ 146
     Psychostimulants  ........... . ......................................... 146
     Dosing  ............................................................. 146

       SideEffects  ......................................................... 146

       OtherMedications  .................................................... 147
   PsychosocialTreatment  ................................................... 147
     Behavioral Approaches  ................................................ 147
     Cognitive-Behavioral Therapy ........................................... 148
     Psychoeducation.. .................................................... 148

     Multimodal Treatments .................................................... 148

    Treatment Controversies ................................................... 149
     Overprescription of Stimulants  .......................................... 149
     Safety of Long-Term Stimulant Use  ...................................... 150


Contents, continued

Depression and Suicide in Children and Adolescents ...................................  150
Conditions Associated With Depression  .........................................  15 1

  Prevalence..................................~ ...............................  151
   MajorDepression .........................................................  151
   Dysthymic Disorder  .................................................. ., ...  152

    Suicide  .................................................................  152
Course and Natural History  ...................................................  152

  Causes  ..... . .............................................................  153
   FamilyandGeneticFactors  ................................................  153

    GenderDifferences  ......................................................  153
   BiologicalFactors  .......................................................  153
   CognitiveFactors  ........................................................  154
    Risk Factors for Suicide and Suicidal Behavior  ................................  154

  Consequences  ..............................................................  155

  Treatment  .................................................................  155
   Depression  .............................................................  155
     Psychosocial Interventions  ............................................. .155
     Pharmacological Treatment ..............................................  156
   BipolarDisorder .........................................................  157
     PharmacologicalTreatment .............................................  157

     Suicide  ................................................................  157
     Psychotherapeutic Treatments ...........................................  157
     PsychopharmacologicalTreatments  ......................................  158
     Intervention After a Suicidal Death of a Relative, Friend, or Acquaintance ........  158
     Community-Based Suicide Prevention  ....................................  159

       CrisisHotlines  .......................................................  159

       MethodRestriction  ...................................................  159
     MediaCounseling  ....................................................  159
     Indirect Case-Finding Through Education  .................................  159

      Direct Case-Finding ...................................................  160
     Aggressive Treatment of Mood Disorders ..................................  160
     Air Force Suicide Prevention Program-A Community Approach  ..............  160

Other Mental Disorders in Children and Adolescents  ..................................  160
AnxietyDisorders  ..........................................................  160


Contents, continued

Separation Anxiety Disorder  .............................................. 160
Generalized Anxiety Disorder .............................................. 161
  SocialPhobia ............................................................................................................   161
Treatment of Anxiety                  ...
                                                                           c  162
Obsessive-Compulsive Disorder ..............................................
Autism.. .................................................................. :6$

  Treatment ... . ................................................... ....... 163
Disruptive Disorders ......................................................... 164

  Treatment ........... ..I ................................................ 166
Substance Use Disorders in Adolescents  ......................................... 166
Eating Disorders ............................................................ 167

Services Interventions ........................................................... 168
Treatment Interventions ...................................................... 168
   OutpatientTreatment ..................................................... 168
   Partial Hospitalization/Day Treatment ........................................ 169
   Residential Treatment Centers .............................................. 169
   InpatientTreatment ....................................................... 171
Newer Community-Based Interventions .......................................... 172
   CaseManagement ........................................................ 172
    Team Approaches to Case Management  ................................... 174
    Home-BasedServices ..................................................... 175
   Family Preservation Programs Under the Child Welfare System  ................ 175
     MultisystemicTherapy ................................................. 175
   Therapeutic Foster Care ................................................... 176
   Therapeutic Group Homes ................................................. 177
  CrisisServices .............................................................. 178

ServiceDelivery ................................................................ 179
  ServiceUtilization ........................................................... 180
   Utilization in Relation to Need .............................................. 180
   EarlyTerminationofTreatment
   PovertyandUtilization ................................................................................................. :8$
    Culture and Utilization .................................................... 181


Contents, continued

Service Systems and Financing  ................................................  182
  PrivateSector ............................................................  182

  PublicSector  ...........................................................  183
Children Served by the Public Sector  ........................................  184
Managed Care in the Public Sector  ..........................................  185
Culturally Appropriate Social Support Services ....................................  186
Support and Assistance for Families  .............................................  187
New Roles for Families in Systems of Care ....................................  188
Family Support ..........................................................  188
FamilySupportGroups  ...................................................  189
Practical Support  .... . ...................................................  190
IntegratedSystemModel  .....................................................  190
Effectiveness of Systems of Care  ...............................................  191
  TheFortBraggStudy .....................................................  191
  TheStarkCountyStudy  ...................................................  192
Summary: Effectiveness of Systems of Care  ......................................  193

Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  193

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  194


           CHAPTER 3
CHILDREN AND MENTAL HEALTH

S panning  roughly 20 years, childhood and
adolescence are marked by dramatic changes in
physical, cognitive, and social-emotional skills and
capacities. Mental health in childhood and adolescence
is defined by the achievement of expected
developmental cognitive, social, and emotional
milestones and by secure attachments, satisfying social
relationships, and effective coping skills. Mentally
healthy children and adolescents enjoy a positive
quality of life; function well at home, in school, and in
their communities; and are free of disabling symptoms
of psychopathology (Hoagwood et al., 1996).
The basic principles for understanding health and
illness discussed in the previous chapter apply to
children and adolescents, but it is important to
underscore the often heard admonition that "children
are not little adults." Even more than is true for adults,
children must be seen in the context of their social
environments, that is, family, peer group, and their
larger physical and cultural surroundings, Childhood
mental health is expressed in this context, as children
proceed through development.

Development, characterized by periods of transition
and reorganization, is the focus of much research on
children and adolescents. Studies focus on normal and
abnormal development, trying to understand and
predict the forces that will keep children and
adolescents mentally healthy and maintain them on
course to become mentally healthy adults. These
studies ask what places some at risk for mental illness
and what protects some but not others, despite exposure
to the same risk factors.

In addition to studies of normal development and of
risk factors, much additional research focuses on
mental illness in childhood and adolescence and what
can be done to prevent or treat it. The science is

challenging because of the ongoing process of
development. The normally developing child hardly
stays the same long enough to make stable
measurements. Adult criteria for illness can be difficult
to apply to children and ado&cents, when the signs
and symptoms of mental disorders are often also the
characteristics of normal development. For example, a
temper tantrum could be an expected behavior in a
young child but not in an adult. At some point,
however, it becomes clearer that certain symptoms and
behaviors cause great distress and may lead to
dysfunction of children, their family, and others in their
social environment. At these points, it is helpful to
consider serious deviations from expected cognitive,
social, and emotional development as "mental
disorders.`*  Specific treatments and services are
available for children and adolescents with such mental
disorders, but one cannot forget that these disorders
emerge in the context of an ongoing developmental
process and shifting relationships within the family and
community. These developmental factors must be
carefully addressed, if one is to maximize the healthy
development of children with mental disorders,
promote remediation of associated impairments, and
enhance their adult outcomes.

The developmental perspective helps us understand
how estimated prevalence rates for mental disorders in
children and adolescents vary as a function of the
degree of impairment that the child experiences in
association with specific symptom patterns. For
example, the MECA Study (Methodology for
Epidemiology of Mental Disorders in Children and
Adolescents) estimated that almost 21 percent of U.S.
children ages 9 to 17 had a diagnosable mental or
addictive disorder associated with at least minimum
impairment (see Table 3-l). When diagnostic criteria

123


Mental Health: A Report of the Surgeon General

Table 3-1. Children and adolescents age g-17 with
     mental or addictive disorders, combined
     MECA sample, 6-month (current) prevalence*

                    w

Anxiety Disorders               13.0

Mood Disorders                  6.2

Disruptive Disorders              10.3

Substance Use Disorders            2.0

Any Disorder                  20.9

o Disorders include diagnosis-specific impairment and Child
Global Assessment Scale 170 (mild global impairment)

Source: Shaffer et al., 1996a

required the presence of significant functional impair-
ment, estimates dropped to 11 percent. This estimate
translates into a total of 4 million youth who suffer
from a major mental illness that results in significant
impairments at home, at school, and with peers.
Finally, when extreme functional impairment is the
criterion, the estimates dropped to 5 percent.
Given the process of development, it is not
surprising that these disorders in some youth are known
to wax and wane, such that some afflicted children
improve as development unfolds, perhaps as a result of
healthy influences impinging on them. Similarly, other
youth, formerly only "at risk," may develop full-blown
forms of disorder, as severe and devastating in their
impact on the youth and his or her family as are the
analogous conditions that affect adults. Characterizing
such disorders as relatively unchangeable under-
estimates the potential beneficial influences that can
redirect a child whose development has gone awry.
Likewise, characterizing children with mental disorders
as "only" the victims of negative environmental
influences that might be fixed if societal factors were
just changed runs the risk of underestimating the
severity of these conditions and the need for focused,
intensive clinical interventions for suffering children
and adolescents. Thus, the science of mental health in
childhood and adolescence is a complex mix of the
study of development and the study of discrete

conditions or disorders. Both perspectives are useful.
Each alone has its limitations, but together they
constitute a more fully informed approach that spans
mental health and illness and allows one to design
developmentally informed strategies for prevention and
treatment.

Normal Development

Development is the lifelong process of growth, matur-
ation, and change that unfolds at the fastest pace during
childhood and adolescence. An appreciation of normal
development is crucial to understanding mental health
in children and adolescents and the risks they face in
maintaining mental health. Distortions in the process of
development may lead to mental disorders. This section
deals with the normal development of understanding
(cognitive development) in young children and the
development of social relationships and temperament.

Theories of Development

Historically, the changes that take place in a child's
psyche between birth and adulthood were largely
ignored. Child development first became a subject of
serious inquiry at the beginning of this century but was
mostly viewed from the perspective of mental disorders
and from the cultural mainstream of Europe and white
America. Some of the "grand theories" of child
development, such as that propounded by Sigmund
Freud, grew out of this focus, and they unquestionably
drew attention to the importance of child development
in laying the foundation for adult mental health. Even
those theories that resulted from the observation of
healthy children, such as Piaget's theory of cognitive
development, paid little attention to the relationship
between the development of the "inner self' and the
environment into which the individual was placed. In
contrast, the interaction of an individual with the
environment was central to the school of thought
known as behaviorism.

Theories of normal development, introduced in
Chapter 2, are presented briefly below, because they
form the basis of many current approaches to
understanding and treating mental illness and mental
health problems in children and adults. These theories

124


have not achieved the broader objective of explaining
how children grow into healthy adults. More study and
perhaps new theories will be needed to improve our
ability to guide healthy child-rearing with scientific
evidence.

Development Viewed as a Series of Stages
Freud and the psychoanalyst Erik Erikson proposed a
series of stages of development reflecting the
attainment of biological objectives. The stages are
expressed in terms of functioning as an individual and
with others-within the family and the broader social
environment (particularly in E&son's theories). (see
Chapter 2). Although criticized as unscientific and
relevant primarily to the era and culture in which they
were conceived, these theories introduced the
importance of thinking developmentally, that is, of
considering the ever-changing physical and
psychological capacities and tasks faced by people as
they age. They emphasized the concept of "maturation"
and moving through the stages of life, adapting to
changing physical capacities and new psychological
and social challenges. And they described mental
health problems associated with failure to achieve
milestones and objectives in their developmental
schemes.

These theories have guided generations of
psychodynamic therapists and child development
experts. They are important to understand as the
underpinnings of many therapeutic approaches, such as
interpersonal therapy, some of which have been
evaluated and found to be efficacious for some
conditions. By and large, however, these theories have
rarely been tested empirically.

Intellectual Development

The Swiss psychologist Jean Piaget also developed a
stage-constructed theory of children's intellectual
development. Piaget's theory, based on several
decades' observations of children (Inhelder & Piaget,
1958), was about how children gradually acquire the
ability to understand the world around them through
active engagement with it. He was the first to recognize
that infants take an active role in getting to know their

world and that children have a different understanding
of the world than do adults. The principal limitations of
Piaget's theories are that they are descriptive rather
than explanatory. Furthermore, he neglected variability
in development and temperament and did not consider
the crucial interplay between a child's intellectual
development and his or her social experiences (Bide11
& Fischer, 1992).

Behavioral Development

125

Other approaches to understanding development are
less focused on the stages ofdevelopment. Behavioral
psychology focused on observation and measurement,
explaining development in terms of responses to
stimuli, such as rewards. Not only did the theories of
the early pioneers (e.g., Pavlov, Watson, and Skinner)
generate a number of valuable treatments, but their
focus on precise description set the stage for current
programs of research based on direct observation.
Social learning theory (Bandura, 1977) emphasized role
models and their impact on children and adolescents as
they develop. Several important clinical tools came out
of behaviorism (e.g., reinforcement and behavior
modification) and social learning theory (cognitive-
behavioral therapy). Both treatment approaches are
used effectively with children and adolescents.

Social and Language Development

Parent-Child Relationships

It is common knowledge that infants and, for the most
part, their principal caretakers typically develop a close
bond during the first year of life, and that in the second
year of life children become distressed when they are
forcibly separated from their mothers. However, the
clinical importance of these bonds was not fully
appreciated until John Bowlby introduced the concept
of atfuchment in a report on the effects of maternal
deprivation (Bowlby, 1951). Bowlby (1969) postulated
that the pattern of an infant's early attachment to
parents would form the basis for all later social
relationships. On the basis of his experience with
disturbed children, he hypothesized that, when the
mother was unavailable or only partially available

Children and Mental Health


Mental Health: A Report of the Surgeon General

during the first months of the child's life, the
attachment process would be interrupted, leaving
enduring emotional scars and predisposing a child to
behavioral problems.

  A mother's bond with her child often starts when
she feels fetal movements during pregnancy.
Immediately after birth, most, but by no means all,
mothers experience a surge of affection that is followed
by a feeling that the baby belongs to them. This
experience may not occur at all or be delayed under
conditions of addiction or postnatal depression (Robson
& Kumar, 1980; Kumar, 1997). Yet, like all enduring
relationships, it seems that the relationship between
mother and child develops gradually and strengthens
over time. Some infants who experience severe neglect
in early life may develop -mentally and emotionally
without lasting consequences, for example, if they are
adopted and their adoptive parents -provide sensitive,
stable, and enriching care, or if depressed or substance-
abusing mothers recover fully (Koluchova, 1972;
Dennis, 1973; Downey & Coyne, 1990). Unfortunately,
however, early neglect is all too often the precursor of
later neglect. When the child remains subject to
deprivation, inadequate or insensitive care, lack of
affection, low levels of stimulation, and poor education
over long periods of time, later adjustment is likely to
be severely compromised (Dennis, 1973; Curtiss,
1977).

In general, it appears that the particular caregiver
with whom infants interact (i.e., biological mother or
another) is less important for the development of good
social relationships than the fact that infants interact
over a period of time with someone who is familiar and
sensitive (Lamb, 1975; Bowlby, 1988). One of the
problems in the later development of children who
experience early institutionalization or significant
neglect is that there may have been no opportunities for
the caretakers and the infants to establish strong and
mutual attachments in a reciprocating relationship.

Origins of language

Recent research has established that successful use of
language and communication is a cornerstone of
childhood mental health. Not only are strong language

capabilities critical to the development of such skills as
listening and speaking, but they also are fundamental to
the acquisition of proficient reading and writing
abilities. In turn, children with a variety of speech and
language impediments are at increasing risk as their
language abilities fall behind those of their peers.
Caretaker and baby start to communicate with each
other vocally as well as visually during the first months
of life. Many, but not all, developmental psychologists
believe that this early pattern of mother-infant
reciprocity and interchange is the basis on which
subsequent language and communication develop.
Various theorists have attemp&d to explain the
relations between language and cognitive development
(Vygotsky, 1962; Chomsky, 1965,1975,1986; Bruner,
197 1; Luria, 197 l), but no single theory has achieved
preeminence. While a number of theories address
language development from different perspectives, all
theories suggest that language development depends on
both biological and socio-environmental factors. It is
clear that language competence is a critical aspect of
children' s mental health.

Relationships With Other Children

To be healthy, children must form relationships not
only with their parents, but also with siblings and with
peers. Peer relationships change over time. In the
toddler period, children's social skills are very limited;
they spend most of their time playing side by side
rather than with each other in a give-and-take fashion.
As children grow, their abilities to form close
relationships become highly dependent on their social
skills. These include an ability to interpret and
understand other children's nonverbal cues, such as
body language and pitch of voice. Children whose
social skills develop optimally respond to what other
children say, use eye contact, often mention the other
child's name, and may use touch to get attention. If
they want to do something that other children oppose,
they can articulate the reasons why their plan is a good
one. They can suppress their own wishes and desires to
reach a compromise with other children and may be
willing to change -at least in the presence of another
child-a stated belief or wish. When they are with a

126


group of children they do not know, they are quiet but
observant until they have a feeling for the structure and
dynamics of the group (Coie & Kuperschmidt, 1983;
Dodge, 1983; Putallaz, 1983; Dodge & Feldman, 1990;
Kagan et al., 1998).

In contrast, children who lack such skills tend to be
rejected by other children. Commonly, they are
withdrawn, do not listen well, and offer few if any
reasons for their wishes; they rarely praise others and
find it difficult to join in cooperative activities (Dodge,
1983). They often exhibit features of oppositional
defiant or conduct disorder, such as regular fighting,
dominating and pushing others around, or being
spiteful (Dodge et al., 1990). Social skills improve with
opportunities to mix with others (Bridgeman, 1981). In
recent years, knowledge of the importance of children's
acquisition of social skills has led to the development
and integration of social skills training components into
a number of successful therapeutic interventions.

Temperament

During the past two decades, as psychologists began to
view the child less as a passive recipient of
environmental input but rather as an active player in the
process, the importance of temperament has become
better appreciated (Plomin, 1986). Temperament is
defined as the repertoire of traits with which each child
is born; this repertoire determines how people react to
the world around them. Such variations in character-
istics were first described systematically by Anna
Freud from her observations of children orphaned by
the ravages of World War II. She noticed that some
children were affectionate, some wanted to be close but
were too shy to approach adults, and some were
difficult because they were easily angered and
frustrated (A. Freud, 1965).

The first major longitudinal observations on
temperament were begun in the 1950s by Thomas and
Chess (1977). They distinguished 10 aspects of
temperament, but there appear to be many different
ways to describe temperamental differences (Goldsmith
et al., 1987). Although there is some continuity in
temperamental qualities throughout the life span (Chess

Children and Mental Health

& Thomas, 1984; Mitchell, 1993), temperament is
often modified during development, particularly by the
interaction with the caregiver. For example, a timid
child can become bolder with the help of parental
encouragement (Kagan, 1984, 1989). Some traits of
temperament, such as attention span, goal orientation,
lack of distractibility, and curiosity, can affect
cognitive functioning because the more pronounced
these traits are, the better a child will learn (Campos et
al., 1983). Of note, it is not always clear whether
extremes of temperament should be considered within
the spectrum of mental disorder (for example, shyness
or anxiety) or whether certain forms of temperament
might predispose a child to the development of certain
mental disorders.

Developmental Psychopathology

Current Developmental Theory Applied to Child
Mental Health and lllness

A number of central concepts and guiding assumptions
underpin our current understanding of children's
mental health and illness. These have been variously
defined by different investigators (Sroufe & Rutter,
1984; Cicchetti & Cohen, 1995; Jensen, 1998), but by
and large these tenets are based on the premise that
psychopathology in childhood arises from the complex,
multilayered interactions of specific characteristics of
the child (including biological, psychological, and
genetic factors), his or her environment (including
parent, sibling, and family relations, peer and
neighborhood factors, school and community factors,
and the larger social-cultural context), and the specific
manner in which these factors interact with and shape
each other over the course of development. Thus, an
understanding of a child's particular history and past
experiences (including biologic events affecting brain
development) is essential to unravel the why's and
wherefore's of a child's particular behaviors, both
normal and abnormal.

While this principle assumes developmental
continuities, to the extent that early experiences are
"brought forward" into the current behavior, it is also

127


Mental Health: A Report of the Surgeon General

important to consider developmental discontinuities,
where qualitative shifts in the child's biological,
psychological, and social capacities may occur. These
may not be easily discerned or predicted ahead of time
and may reflect the emergence of new capacities (or
incapacities) as the child's psychological self, brain,
and social environment undergo significant
reorganization.

A second precept underlying an adequate
understanding of children's mental health and illness
concerns the innate tendencies of the child to adapt to
his or her environment. This principle of adaptation
incorporates and acknowledges children's "self-
righting" and "self-organizing" tendencies; namely, that
a child within a given context naturally adapts (as much
as possible) to a particular ecological niche, or when
necessary, modifies that niche to get needs met. When
environments themselves are highly disordered or
pathological, children's adaptations to such settings
may also be pathologic, especially when compared with
children's behaviors within more healthy settings. This
principle underscores the likelihood that some (but not
all) "pathologic" behavioral syndromes might be best
characterized as adaptive responses when the child or
adolescent encounters difficult or adverse
circumstances.  Notably,  this ability to adapt
behaviorally is reflected at multiple levels, including
the level of brain and nervous system structures
(sometimes called neuroplasticity).
  A third consideration that guides both research-
based and clinical approaches to understanding child
mental health and illness concerns the importance of
age and timing factors. For example, a behavior that
may be quite normal at one age (e.g., young children's
distress when separated from their primary caretaking
figure) can be an important symptom or indicator of
mental illness at another age. Similarly, stressors or risk
factors may have no, little, or profound impact,
depending on the age at which they occur and whether
they occur alone or with other accumulated risk factors.
  A fourth premise underpinning an adequate
understanding of children's mental health and illness
concerns the importance of the child's context. Perhaps

the most important context for developing children is
their caretaking environment. Research with both
humans and animals has demonstrated that gross
disruptions in this critical parameter have immediate
and long-term effects, not just on the young organism's
later social-emotional development but also on physical
health, long-term morbidity and mortality, later
parenting practices, and even behavioral outcomes of
its offspring. Moreover, context may play a role in the
definition of what actually constitutes psychopathology
or health. The same behavior in one setting or culture
might be acceptable and even "normative," whereas it
may be seen as pathological in another.
Yet another principle central to understanding child
mental health and illness is that normal and abnormal
developmental processes are often separated only by
differences of degree. Thus, supposed differences
between normal and abnormal behavior may be better
understood by taking into account the differences in the
amount or degree of the particular behavior, or the
degree of exposure to a particular risk factor.
Frequently, no sharp distinctions can be made.
  The virtue of these developmental considerations
when applied to children is that (a) they enable a
broader, more informed search for factors related to the
onset of, maintenance of, and recovery from abnormal
forms of child behavior; (b) they help move beyond
static diagnostic terms that tend to reduce the behaviors
of a complex, developing, adapting, and feeling child to
an oversimplified diagnostic term; (c) they offer a new
perspective on potential targets for intervention,
whether child-focused or directed toward
environmental or contextual factors; and (d) they
highlight the possibility of important timing
considerations:  windows of opportunity during a
child's development when preventive or treatment
interventions may be especially effective.
  In the sections that follow, these considerations
will help the reader understand the important
differences from chapters focusing principally on
adults, as well as the unique opportunities for
intervention that occur because of these differences.

128


Overview of Risk Factors and
Prevention
Current approaches to understanding the etiology of
mental disorders in childhood are driven by empirical
advances in neuroscience and behavioral research
rather than by theories. Epidemiological research on the
factors that make children vulnerable to mental illness
is important for several reasons: delineating the range
of risk factors for particular mental disorders helps to
understand their etiology; the populations most at risk
can be identified; understanding the relative strength of
different risk factors allows for the design of
appropriate prevention programs for children in
different contexts; and resources can be better allocated
to intervene so as to maximize their effectiveness.

Risk Factors

There is now good evidence that both biological factors
and adverse psychosocial experiences during childhood
influence-but not necessarily "cause'`-the mental
disorders of childhood. Adverse experiences may occur
at home, at school, or in the community. A stressor or
risk factor may have no, little, or a profound impact,
depending on individual differences among children
and the age at which the child is exposed to it, as well
as whether it occurs alone or in association with other
risk factors. Although children are influenced by their
psychosocial environment, most are inherently resilient
and can deal with some degree of adversity. However,
some children, possibly those with an inherent
biological vulnerability (e.g., genes that convey
susceptibility to an illness), are more likely to be
harmed by an adverse environment, and there are some
environmental adversities, especially those that are
long-standing or repeated, that seem likely to induce a
mental disorder in all but the hardiest of children. A
recent analysis of risk factors by Kraemer and
colleagues (1997) has provided a useful framework for
differentiating among categories of risk and may help
point this work in a more productive direction.
Risk factors for developing a mental disorder or
experiencing problems in  social-emotional
development include prenatal damage fromexposure to
alcohol, illegal drugs, and tobacco; low birth weight;

Children and Mental Health

difficult temperament or an inherited predisposition to
a mental disorder; external risk factors such as poverty,
deprivation, abuse and neglect; unsatisfactory relation-
ships; parental mental health disorder; or exposure to
traumatic events.

Biologica/ Influences on Mental Disorders
It seems likely that the roots of most mental disorders
lie in some combination of genetic and environmental
factors-the latter may be biological or psychosocial
(Rutter et al., 1999). However, increasing consensus
has emerged that biologic factors exert especially
pronounced influences on s&era1 disorders in par-
ticular, including pervasive developmental disorder
(Piven & O'Leary, 1997), autism (Piven & O'Leary,
1997), and early-onset schizophrenia (McClellan &
Werry, in press). It is also likely that biological factors
play a large part in the etiology of social phobia (Pine,
1997), obsessive-compulsive disorder (Leonard et al.,
1997), and other disorders such as Tourette's disorder
(Leckman et al., 1997).

Two important points about biological factors
should be borne in mind. The first is that biological
influences are not necessarily synonymous with those
of genetics or inheritance. Biological abnormalities of
the central nervous system that influence behavior,
thinking, or feeling can be caused by injury, infection,
poor nutrition, or exposure to toxins, such as lead in the
environment. These abnormalities are not inherited.
Mental disorders that are most likely to have genetic
components  include autism,  bipolar disorder,
schizophrenia,  and attention-deficit/hyperactivity
disorder (ADHD) (National Institute of Mental Health
[NIMH], 1998). Second, it is erroneous to assume that
biological and environmental factors are independent of
each other, when in fact they interact. For example,
traumatic experiences may induce biological changes
that persist. Conversely, children with a biologically
based behavior may modify their environment. For
example, low-birth-weight infants who have sustained
brain damage, and thereby become excessively
irritable, may change the behavior of caretakers in a
way that adversely affects the caretaker's ability to
provide good care. Thus, it is now well documented

129


Mental Health: A Report of the Surgeon General

that a number of biologic risk factors exert important
effects on brain structure and function and increase the
likelihood of subsequently developing mental dis-
orders. These well-established factors include intra-
uterine exposure to alcohol or cigarette smoke (Nichols
& Chen, 1981), perinatal trauma (Whitaker et al.,
1997), environmental exposure to lead (Needleman et
al., 1990), malnutrition of pregnancy, traumatic brain
injury, nonspecific forms of mental retardation, and
specific chromosomal syndromes.

Psychosocial Risk Factors

A landmark study on risks from the environment
(Rutter & Quinton, 1977) showed that several factors
can endanger a child's mental health. Dysfunctional
aspects of family life such as severe parental discord,
a parent's psychopathology or criminality,
overcrowding, or large family size can predispose to
conduct disorders and antisocial personality disorders,
especially if the child does not have a loving
relationship with at least one of the parents (Rutter,
1979). Economic hardship can indirectly increase a
child' s risk of developing a behavioral disorder because
it may cause behavioral problems in the parents or
increase the risk of child abuse (Dutton, 1986; Link et
al., 1986; Wilson, 1987; Schorr, 1988). Exposure to
acts of violence also is identified as a possible cause of
stress-related mental health problems (Jenkins & Bell,
1997). Studies point to poor caregiving practices as
being a risk factor for children of depressed parents
(Zahn-Waxler et al., 1990).

The quality of the relationship between infants or
children and their primary caregiver, as manifested by
the security of attachment, has long been felt to be of
paramount importance to mental health across the life
span. In this regard, the relationship between maternal
problems and those factors in children that predispose
them to form insecure attachments, particularly young
infants' and toddlers' security of attachment and
temperament style and their impact on the development
of mood and conduct disorders, is of great interest to
researchers. Many investigators have taken the view
that the nature and the outcome of the attachment
process are related to later depression, especially when

the child is raised in an abusive environment (Toth &
Cicchetti, 1996), and to later conduct disorder
(Sampson & Laub, 1993). The relationship of
attachment to mental disorders has been the subject of
several important review articles (Rutter, 1995; van
Llzendoom et al., 1995).

There is controversy as to whether the key
determinant of "insecure" responses to strange
situations stems from maternal behavior or from an
inborn predisposition to respond to an unfamiliar
stranger with avoidant behaviors, such as is found in
socially phobic children (Belsky & Rovine, 1987;
Kagan et al., 1988; Thompson et'al., 1988; Kagan,
1994, 1995). Kagan demonstrated that infants who
were more prone to being active, agitated, and tearful
at 4 months of age were less spontaneous and sociable
and more likely to show anxiety symptoms at age 4
(Snidman et al., 1995; Kagan et al., 1998). These
findings are of considerable significance, because long-
term study of such highly reactive, behaviorally
inhibited infants and toddlers has shown that they are
excessively shy and avoidant in early childiiood and
that this behavior persists and predisposes to later
anxiety (Biederman et al., 1993). There is also some
controversy as to whether "difficult" temperament in an
infant is an early manifestation of a behavior problem,
particularly in children who go on to demonstrate such
problems as conduct disorder (Olds et al., 1999). One
analysis of the attachment literature suggests that
abnormal or insecure forms of attachment are largely
the product of maternal problems, such as depression
and substance abuse, rather than of individual
differences in the child (van llzendoom et al., 1992).
  The relationship between a child's temperament
and parenting style is complex (Thomas et al., 1968);
it may be either protective if it is good or a risk factor
if it is poor. Thus, a difficult child's chances of
developing mental health problems are much reduced
if he or she grows up in a family in which there are
clear rules and consistent enforcement (Maziade et al.,
1985), while a child exposed to inconsistent discipline
is at greater risk for later behavior problems (Werner &
smith, 1992).

130


Famjjy and Genetic Risk Factors
As noted above  in the relationships between
temperament and attachment, in some instances the
relative contributions of biologic influences and
environmental influences are difficult to tease apart, a
problem that particularly affects studies investigating
the impact of family and genetic influences on risk for
childhood mental disorder. For example, research has
shown that between 20 and 50 percent of depressed
children and adolescents .have a family history of
depression (Puig-Antich et al., 1989; Todd et al., 1993;
Williamson et al., 1995; Kovacs, 1997b). The exact
reasons for this increased risk have not been fully
clarified, but experts tend to agree that both factors
interact to result in this increased risk (Weissman et al.,
1997). Family research has found that children of
depressed parents are more than three times as likely as
children of nondepressed parents to experience a
depressive disorder (see Birmaher et al., 1996a and
1996b for review). Parental depression also increases
the risk of anxiety disorders, conduct disorder, and
alcohol dependence (Downey & Coyne, 1990;
Weissman et al., 1997; Wickramaratne & Weissman,
1998). The risk is greater if both parents have had a
depressive illness, if the parents were depressed when
they were young, or if a parent had several episodes of
depression (Merikangas et al., 1988; Downey &Coyne,
1990; McCracken, 1992a, 1992b; Mufson et al., 1992;
Warner et al., 1995; Wickramaratne & Weissman,
1998).

Effects of Parental Depression

Depressed parents may be withdrawn and lack energy
and consequently pay little attention to, or provide
inadequate supervision of, their children. Alternatively,
such parents may be excessively irritable and
overcritical, thereby upsetting children, demoralizing
them, and distancing them (Cohn et al., 1986; Field et
al., 1990). At a more subtle level, parents' distress-
being pessimistic, tearful, or threatening suicide-is
sometimes seen or heard by the child, thereby inducing
anxiety. Depressed parents may not model effective
coping strategies for stress; instead of "moving on,"
some provide an example of "giving up" (Garber &

Children and Mental Health

Hilsman, 1992). Depression is also often associated
with marital discord, which may have its own adverse
effect on children and adolescents. Conversely, the
behavior of the depressed child or teenager may
contribute to family stress as much as being a product
of it. The poor academic performance, withdrawal from
normal peer activities, and lack of energy or motivation
of a depressed teenager may lead to intrusive or
reprimanding reactions from parents that may further
reduce the youngster's self-esteem and optimism.
The consequences of maternal depression vary with
the state of development of the child, and some of the
effects are quite subtle (Cicchetti & Toth, 1998). For
example, in infancy, a withdrawn or unresponsive
depressed mother may increase an infant's distress, and
an intrusive or hostile depressed mother may lead the
infant to avoid looking at and communicating with her
(Cohn et al., 1986). Other studies have shown that if
infants smiles are met with a somber or gloomy face,
they respond by showing a similarly somber expression
and then by averting their eyes (Murray et al., 1993).
During the toddler stage of development, research
shows that the playful interactions of a toddler with a
depressed mother are often briefer and more likely to
be interrupted (by either the mother or the child) than
those with a nondepressed parent (Jameson et al.,
1997). Research has shown that some depressed
mothers are less able to provide structure or to modify
the behavior of excited toddlers, increasing the risk of
out-of-control behavior, the development of a later
conduct disorder, or later aggressive dealings with
peers (Zahn-Waxler et al., 1990; Hay et al., 1992). A
depressed mother's inability to control a young child's
behavior may result in the child failing to learn
appropriate skills for settling disputes without reliance
on aggression.

Stressful life Events

The relationship between stressful life events and risk
for child mental disorders is well established (e.g.,
Garmezy, 1983; Hammen, 1988; Jensen et al., 1991;
Garber & Hilsman, 1992), although this relationship in
children and adolescents is complicated, perhaps
reflecting the impact of individual differences and

131


Mental Health: A Report of the Surgeon General

developmental changes. For example, there is a
relationship between stressful life events, such as
parental death or divorce, and the onset of major
depression in young children, especially if they occur
in early childhood and lead to a permanent and negative
change in the child's circumstances. Yet findings are
mixed as to whether the same relationship is true for
depression in midchildhood or in adolescence
(Birmaher et al., 1996a and 1996b; Garrison et al.,
1997).

Childhood Malffeafrnent

Child abuse is a very widespread problem; it is
estimated that over 3 million children are maltreated
every year in the United States (National Committee to
Prevent Child Abuse, 1995). Physical abuse is
associated with insecure attachment (Main & Solomon,
1990), psychiatric disorders such as post-traumatic
stress disorder, conduct disorder, ADHD (Famularo et
al., 1992), depression (Kaufman, 1991), and impaired
social functioning with peers (Salzinger et al., 1993).
Psychological maltreatment is believed to occur more
frequently than physical maltreatment (Cicchetti &
Carlson, 1989); it is associated with depression,
conduct disorder, and delinquency (Kazdin et al., 1985)
and can impair social and cognitive functioning in
children (Smetana & Kelly, 1989).

Peer and Sibling Influences

The influence of maladaptive peers can be very
damaging to a child and greatly increases the likelihood
of adverse outcomes such as delinquency, particularly
if the child comes from a family beset by many
stressors (Friday & Hage, 1976; Loeber & Farrington,
1998). One way to reduce antisocial behavior in
adolescents is to encourage such youths to interact with
better adapted youths under the supervision of a mental
health worker (Feldman et al., 1983). Sibling rivalry is
a common component of family life and, especially in
the presence of other risk factors, may contribute to
family stresses (Patterson & Dishion, 1988). Although
almost universal, in the presence of other risk factors it
may be the origin of aggressive behavior that
eventually extends beyond the family (Patterson &

Dishion, 1988). In stressed or large families, parents
have many demands placed on their time and find it
difficult to oversee, or place limits on, their young
children's behavior. When parental attention is in short
supply, young siblings squabbling with each other
attract available attention. In such situations, parents
rarely comment on good or neutral behavior but do pay
attention, even if in a highly critical and negative way,
when their children start to fight; as a result, the act of
fighting may be inadvertently rewarded. Thus, any
attention, whether it be praise or physical punishment,
increases the likelihood that the `behavior is repeated.

Correlations and Interactions Among Risk
Factors
Recent evidence suggests that social/environmental risk
factors may combine with physical risk factors of the
child, such as neurological damage caused by birth
complications or low birth-weight, fearlessness and
stimulation-seeking behavior, learning impairments,
autonomic underarousal, and insensitivity to physical
pain and punishment (Raine et al., 1996, 1997, 1998).
However, testing models of the impact of risk factor
interactions for the development of mental disorders is
difficult, because some of the risk factors are difficult
to measure. Thus, the trend these days is to move away
from the consideration of individual risk factors toward
identifying measurable risk factors and their com-
binations and incorporating all of them into a single
model that can be tested (Patterson, 1996).

The next section describes a series of preventive
interventions directed against the environmental risk
factors described above.

Prevention

Childhood is an important time to prevent mental
disorders and to promote healthy development, because
many adult mental disorders have related antecedent
problems in childhood. Thus, it is logical to try to
intervene early in children's lives before problems are
established and become more refractory. The field of
prevention has now developed to the point that
reduction of risk, prevention of onset, and early
intervention are realistic possibilities. Scientific

132


methodologies  in prevention are increasingly
sophisticated, and the results from high-quality
research trials are as credible as those in other areas of
biomedical and psychosocial science. There is a
growing recognition that prevention does work; for
example, improving parenting skills through training
can substantially reduce antisocial behavior in children
(Patterson et al., 1993).

The wider human services and law enforcement
communities, not just the mental health community,
have made prevention a priority. Policymakers and
service providers in health, education, social services,
and juvenile justice have become invested in
intervening early in children's lives: they have come to
appreciate that mental health is inexorably linked with
general health, child care, and success in the classroom
and inversely related to involvement in the juvenile
justice system. It is also perceived that investment in
prevention may be cost-effective. Although much
research still needs to be done, communities and
managed health care organizations eager to develop,
maintain,  and measure empirically supported
preventive interventions are encouraged to use a risk
and evidence-based framework developed by the
National Mental Health Association (Mrazek, 1998).
Some forms of primary prevention are so familiar
that they are no longer thought of as mental health
prevention activities, when, in fact, they are. For
example, vaccination against measles prevents its
neurobehavioral complications; safe sex practices and
maternal screening prevent newborn infections such as
syphilis and HIV, which also have neurobehavioral
manifestations. Efforts to control alcohol use during
pregnancy help prevent fetal alcohol  syndrome
(Stratton et al., 1996). All these conditions may
produce mental disorders in children.
This section describes several exemplary
interventions that focus on enhancing mental health and
primary prevention of behavior problems and mental
health disorders. Prevention of a disorder or its
recurrence or exacerbation is discussed together with
that disorder in other sections of this chapter.
Prevention strategies usually target high-risk infants,

Children and Mental Health

young children, adolescents, and/or their caregivers,
addressing the risk factors described above.

Project Head Start

Project Head Start, though generally conceived of as an
,early childhood intervention program, is probably this
country's best known prevention program. In 1965,
when it was designed and first implemented in 2,500
communities, Head Start's target population was
economically disadvantaged preschool children. Its
goal was to improve the social competence of these
children through an 8-weekcomprehensive intervention
that included a center-based component and a home
visit by community aides, focusing on social, health,
and education services (Karoly et al., 1998). A number
of psychologists, most notably Jerome Bruner (197 l),
argued that children can be trained to think in a more
logical way and that the development of logic is not
entirely predetermined. Bruner's views were very
influential in launching early intervention programs
such as Head Start. There is now ample evidence that,
by providing an appropriately stimulating environment,
significant advances in knowledge and reasoning
ability can be achieved,

The program has served over 15 million children
and has cost $31 billion since its inception (General
Accounting Office, 1997). It has changed in many ways
in the intervening years, and there now is considerable
program variation across localities (Zigler & Styfco,
1993). Early evaluations of Head Start showed
promising results in terms of higher IQ scores, but over
the years many of the findings have met with criticism
and skepticism. The reason is that there has been no
national randomized controlled trial to evaluate the
program as originally designed (Karoly et al., 1998).

Repeated evaluations of Head Start programs that
did not employ such a rigorous design (Berrento-
Clement et al., 1984;.Seitz et al., 1985; Lee et al., 1990;
Yoshikawa, 1995) have shown that, although focused
early education can improve test scores, the advantage
is short-lived. The test scores of children of comparable
ability who do not receive early childhood education
quickly catch up with those who have been in Head
Start programs (Lee et al., 1990). Yet there appear to be


Mental Health: A Report of the Surgeon General

more enduring academic outcomes. A review of 36
studies of Head Start and other early childhood
programs found them to lower enrollment in special
education and to enhance rates of high school
graduation and promotion to the next grade level
(Barnett, 1995). Head Start and other forms of early
education offer arguably even more important benefits,
which do not become apparent until children are older.
The advantages are mainly social, rather than cognitive,
and include better peer relations, less truancy, and less
antisocial behavior (Berrento-Clement et al., 1984;
Provence, 1985; Seitz et al., 1985; Webster-Stratton,
1998; Weikart, 1998). Although important from a
societal perspective, it is not known whether these very
significant benefits are due to direct effects on the child
or to the parent education programs that often accom-
pany Head Start programs (Zigler & Styfco, 1993).

Carolina Abecedarian Project

The Carolina Abecedarian Project is an example of an
early educational intervention for high-risk children
that has been tested more rigorously than Head Start in
well-designed, randomized, and controlled trials. It
addresses the issue of the timing of the intervention,
that is, when an intervention should begin and *how
long it should continue. Unlike Head Start, children
were enrolled in this program at birth and remained in
it for several years.

In the Carolina Abecedarian Project, children who
had been identified at birth as being at high risk for
school failure on the basis of social and economic
variables were enrolled in a child-centered prevention-
oriented intervention program delivered in a day care
setting from infancy to age 5 (Campbell & Ramey,
1994'). The preschool intervention operated 8 hours a
day for 50 weeks a year and included an infant
curriculum to enhance development and parent
activities. At elementary school age, a second
intervention was provided: the children, who were then
in kindergarten, received 15 home visits a year for 3
years from a teacher who prepared a home program to

' Also see Ramey et al., 1984; Ramey & Campbell, 1984; Horacek
et al., 1987; Martin et al., 1990.

supplement the school's basic curriculum. There were
significant positive effects `from the two-phase
intervention on intellectual development and academic
achievement, and these effects were maintained
through age 12, which was 4 -years after the
intervention ended.

Infant Health and Development Program
The Infant Health and Development Program (IHDP)
also began at birth and continued for several years and
was also designed for low-birth-weight and premature
infants (McCarton et al., 1997'). T&intervention was
provided until the children reached 3 years of age. It
included pediatric care, home visits, parent group
meetings, and center-based schooling 5 days a week
from 12 months of age to 3 years. At the end of the
intervention, the group receiving it had significantly
higher mean IQ scores than did the control group. Of
note, although children's behavior problems were not
targeted by the intervention, mothers of children in the
intervention group reported significantly fewer
behavior problems than those in the control group.

Elmira Prena tallEarly Infancy Project
The Elmira Prenatal/Early Infancy Project is an
excellent example of a preventive intervention that
targeted an at-risk population to prevent the onset of a
series of health, social, and mental health problems in
children and in their mothers (Olds et al., 1998 and
previous years3). This study warrants special attention
because of its positive and enduring findings,
randomized, controlled design, cost-benefit analysis,
and unusually long-term follow up of 15 years. The
study began by focusing on pregnant women bearing
their first child in a small, semirural county in upstate
New York. The children of these women were
considered high risk because of their mother's young
maternal age, single-parent status, or low socio-
economic level. There were four study groups to which

* Also see IHDP, 1990; Ramey et al., 1992; Brooks-Gun et al.,
1994a, 1994b; Casey et al., 1994.
3 Also see Olds et al., 1986a, 1986b, 1988, 1993, 1994a. 1994b,
1995, and 1997.

134


random assignment was made. The first group received
developmental screening at ages 1 and 2; the second
group received screening and free transportation to
health care; the third group received screening,
transportation, and nurse home visits once every 2
weeks during pregnancy; and the fourth group received
all of the above plus continued home visits by a nurse
on a diminishing schedule until the infants were 24
months of age. The intervention focused on parent
education, enhancement of the women's informal
support systems, and linkage with community services.
Women in both groups receiving home visits from
nurses had many positive behavioral outcomes
compared with groups that received screening only or
screening plus transportation. Among the women at
highest risk for caregiver dysfunction, those who were
visited by a nurse had fewer instances of verified child
abuse and neglect during the first 2 years of their
children's lives. They were observed in their homes to
restrict and punish their children less frequently, and
they provided more appropriate play materials. There
were no differences between groups in the rates of new
cases of child abuse and neglect or in the children's
intellectual functioning in the period when the children
were 25 to 48 months of age. However, nurse-visited
children had fewer behavioral and parental coping
problems (as noted in the physician record). Nurse-
visited mothers were observed to be more involved
with their children than were mothers in the
comparison groups.

A cost-benefit analysis estimated program costs
(direct costs of nurse visitation, costs of services to
which nurses linked families, and costs of
transportation) and benefits (cost outcomes presumed
to be affected by the program through improved
maternal and child functioning, such as less use of Aid
to Families With Dependent Children, Medicaid, food
stamps, child protective services, and greater tax
revenues generated by women's working). Taking a
time point of 2 years after the program ended, the net
cost of the program for the sample as a whole was
S 1,582 per family, but for low-income families, the cost

Fifteen years after the birth of the index child (13
years after termination of the intervention), women
who were visited by nurses during pregnancy and
infancy had significantly fewer subsequent preg-
nancies, less use of welfare, fewer verified reports of
abuse and neglect, fewer behavioral impairments due to
use of alcohol and other drugs, and fewer arrests. Their
children, now adolescents, reported fewer instances of
running away, fewer arrests, fewer convictions and
violations of probation, fewer lifetime sex partners,
fewer cigarettes smoked per day, and fewer days having
consumed alcohol in the last 6 months. The parents of
these adolescents reported that their children had fewer
behavioral problems related to use of alcohol and other
drugs.

Primary Mental Health Project

The Primary Mental Health Project (PMHP) is a 42-
year-old program for early detection and prevention of
young children's school adjustment problems. PMHP
currently operates in approximately 2,000 schools in
700 school districts nationally and internationally.
Seven states in the United States are implementing the
program systematically, based on authorizing
legislation and state appropriations.

135

PMHP has four key elements: (1) a focus on
primary grade children; (2) systematic use of brief
objective screening measures for early identification of
children in need; (3) use of carefully selected, trained,
closely supervised nonprofessionals (called child
associates) to establish a caring and trusting
relationship with children; and (4) a changing role for
the school professionals that features selection,
training, and supervision of child associates, early
systematic screening, and functioning as program
coordinator, liaison, and consultant to parents, teachers
and other school personnel.

The PMHP model has been applied flexibly to
diverse ethnic and sociodemographic groups in settings
where help is most needed. Over 30 programevaluation
studies, including several at the state level, underscore

Children and Mental Health

of the program was recovered with a dividend of $180
per family.


Mental Health: A Report of the Surgeon General

the program's efficacy (Cowen et al., 1996). Significant
improvements were detected in children's grades,
achievement test scores, and adjustment ratings by
teachers and child associates. PMHP represents a
successful mental health intervention that does not
require highly trained and skilled mental health
professionals.

Other Prevention Programs and Strategies
These and other prevention trials demonstrate that
positive adaptation and social-emotional well-being in
children and youth can be enhanced, and that risk
factors for behavioral and emotional disorders can be
reduced, by intervening in home, school, day care, and
other settings. Programs have focused not only on
mental health problems but also on other problem
behaviors (Botvin et al., 1995; St.. Lawrence et al.,
1995; Kellam & Anthony, 1998).

Other prevention trials are showing similar
benefits. For example, a large-scale, four-site school-
and home-based prevention trial, known as FastTrack,
has shown clear benefits in reducing behavior problems
among high-risk children, as well as in reducing needs
for and use of special education, which has substantial
cost-effectiveness implications (Conduct Problems
Prevention Research Group, 1999a, 1999b). Another
trial is now under way to test the efficacy of a
preventive intervention provided to adolescents whose
parents are currently being treated for depression
within a health maintenance organization (Clark et al.,
1998). Treatment of mood disorders also has potential
effectiveness for the primary prevention of suicide, as
explained in the later section on Depression and
Suicide in Children and Adolescents.

Overview of Mental Disorders in
Children

A consideration of developmental principles enhances
understanding of mental illness in children and
adolescents by reconciling the concept of mental
disorder as a stable `state or condition with the ongoing

development of the child. According to these
principles, a mental disorder results from the inter-
action of a child and his or her environment. Thus,
mental illness often does not lie within the child alone.
Within the conceptual framework and language of
integrative neuroscience, the mental disorder is an
"emergent property"  of the transaction with the
environment. Proper assessment of a child's mood,
thought, and behaviors demands a simultaneous
consideration of nature and nurture, genes and
environment, and biology and psychosocial influences.
These relationships are reciprocal, The brain shapes
behavior, and learning shapes the brain.
  Mental disorders must be considered within the
context of the family and peers, school, home, and
community. Taking the social-cultural environment into
consideration is essential to understanding mental
disorders in children and adolescents, as it is in adults.
However, the changing nature of these environments,
coupled with the progressively unfolding processes of
brain de,velopment, makes the emphasis on context, as
well as development, more complex and more central
in child mental health (Jensen & Hoagwood, 1997).
Thus, developmental psychopathology encourages
consideration of the transactions between the individual
and the social and physical environment at the same
time that signs and symptoms of mental disorder are
considered. Moreover, focusing on diagnostic labels
alone provides too limited a view of mental disorders
in children and adolescents.

General Categories of Mental Disorders of
Children
Mental disorders with onset in childhood and
adolescence are listed in Table 3-2 as they appear in
DSM-IV. These disorders fall into a number of broad
categories, most of which apply not just to children but
across the entire life span: anxiety disorders; attention-
deficit and disruptive behavior disorders; autism and
other pervasive developmental disorders; eating
disorders (e.g., anorexianervosa); elimination disorders

136


Table 3-2.  Selected mental disorders of childhood and
       adolescence from the DSM-IV
                                      I
  Anxiety Disorders

Attention-Deficit and Disruptive Behavior Disorders

Autism and Other Pervasive Developmental
Disorders

Eating Disorders

Elimination Disorders

Learning and Communication Disorders

Mood Disorders (e.g., Depressive Disorders)

Schizophrenia

Tic Disorders

(e 0
aa.9 enuresis, encopresis); learning and communi-
cation disorders; mood disorders (e.g., major depres-
sive disorder, bipolar disorder); schizophrenia; and tic
disorders (Tourette's disorder). Several of the more
common childhood conditions are described below.
Disorders of anxiety and mood are characterized by
the repeated experience of intense internal or emotional
distress over a period of months or years. Feelings
associated with these conditions may be those of
unreasonable fear and anxiety, lasting depression, low
self-esteem, or worthlessness. Syndromes of depression
and anxiety very commonly co-occur in children. The
disorders in this broad group include separation anxiety
disorder, generalized anxiety disorder, post-traumatic
stress disorder, obsessive-compulsive disorder, major
depressive disorder, dysthymia, and bipolar disorder
(DSM-IV).

Children who suffer from attention-deficit disorder,
disruptive disorder, and oppositional defiant disorder
may be inattentive, hyperactive, aggressive, and/or
defiant; they may repeatedly defy the societal rules of
the child's own cultural group or disrupt a well-ordered
environment such as a school classroom.

Children with autism and other pervasive
developmental disorders often suffer from disordered
cognition or thinking and have difficulty understanding
and using language, understanding the feelings of
others, or, more generally, understanding the world
around them. Such disorders are often associated with

Children and Mental Health

severe learning difficulties and impaired intelligence.
The disorders in this category include the pervasive
developmental disorders, autism, Asperger's disorder,
and Rett's disorder (DSM-IV).

  It is not uncommon for a child to have more than
one disorder or to have disorders from more than one of
these groups.  Thus, children with pervasive
developmental disorders often suffer from ADHD.
Children with a conduct disorder are often depressed,
and the various anxiety disorders may co-occur with
mood disorders. Learning disorders are common in all
these conditions, as are alcohol and other substance use
disorders (DSM-IV).

Assessment and Diagnosis

As with adults, assessment of the mental function of
children has several important goals: to learn the
unique functional characteristics of each individual
(sometimes called formulation) and to diagnose signs
and symptoms that suggest the presence of a mental
disorder.  Case formulation helps the clinician
understand the child in the context of family and
community. Diagnosis helps identify children who may
have a mental disorder with an expected pattern of
distress and limitation, course, and recovery. Both
processes are useful in planning for treatment and
supportive care. Both are helpful in developing a
treatment plan.

Even with the aid of widely used diagnostic
classification systems such as DSM-IV (see Chapter 2),
diagnosis and diagnostic classification present a greater
challenge with children than with adults for several
reasons. Children are often unable to verbalize thoughts
and feelings. Clinicians by necessity become more
reliant on parents, teachers, and other professionals,
who may be unable to assess these mental processes in
children. Children's normal development also presents
an ever-changing backdrop that complicates clinical
presentation. As previously noted, some behaviors may
be quite normal at one age but suggest mental illness at
another age. Finally, the criteria for diagnosing most
mental disorders in children are derived from those for
adults, even though relatively little research attention
has been paid to the validity of these criteria in

137


Mental Health: A Report of the Surgeon General

children. Expression, manifestation, and course of a
disorder in children might be very different from those
in adults. The boundaries between normal and
abnormal are less distinct and those between one
diagnosis and another are fluid.

Thus, the field of childhood mental health
historically downplayed diagnosis. This trend began to
change in the 198Os, in part as a result of developing
practice guidelines and tougher reimbursement
standards (Lonigan et al., 1998) and more appropriate
diagnostic categories and criteria (DSM III, III-R, and
IV): The body of accumulated research on treatment
and services referred to throughout this chapter reflects
the past emphasis on the efficacy of treatments,
sometimes with and sometimes independently of
diagnosis.

Most disorders are diagnosed by. their manifesta-
tions, that is, by symptoms and signs, as well as
functional impairment (see Chapter 2). A diagnosis is
made when the combination and intensity of symptoms
and signs meet the criteria for a disorder listed in DSM-
IV. However, diagnosis of childhood mental disorders,
as noted earlier, is rarely an easy task. Many of the
symptoms, such as outbursts of aggression, difficulty in
paying attention, fearfulness or shyness, difficulties in
understanding language, food fads, or distress of a child
when habitual behaviors are interfered with, are normal
in young children and may occur sporadically
throughout childhood.  Well-trained clinicians
overcome this problem by determining whether a given
symptom is occurring with an unexpected frequency,
lasting for an unexpected length of time, or is occurring
at an unexpected point in development. Clinicians with
less experience may either overdiagnose normal
behavior as a disorder or miss a diagnosis by failing to
recognize abnormal behavior. Inaccurate diagnoses are
more likely in children with mild forms of a disorder.

Evaluation Process

When conducted by a mental health professional, the
evaluation process usually consists of gathering
information from several sources: the child, parents,

teachers, pediatricians, and hospital .records. The
mental health professional also makes observations of
the child's or teenager's behavior and patterns of
speech. Very often, additional testing is requested to
assess the child's or youth's intelligence and learning
abilities. Information about symptoms can be obtained
more reliably by direct questioning (Gittelman-Klein,
1978; Gittelman, 1985).

A full evaluation may take several hours. By that
time,  the professional  should have a good
understanding of how the child is functioning at home,
at school, and in society and some u6derstanding of the
family's characteristics. With this information, the
child or adolescent psychiatrist, clinical psychologist,
or social worker can suggest further investigations and,
if needed, initiate treatment of the child and provide
counseling to parents and teachers on how to best assist
the child or teenager to overcome problems.
There is a dearth of child psychiatrists, appro-
priately trained clinical child psychologists, or social
workers (Thomas & Holzer, 1999). Furthermore, many
barriers remain that prevent children, teenagers, and
their parents from seeking help from the small number
of specially trained professionals who are available.
This places a burden on pediatricians, family
physicians, and other gatekeepers (such as school
counselors and primary child care workers) to identify
children for referral and treatment decisions. These
gatekeepers are unlikely to have the time and
specialized training to do an evaluation requiring
several hours. Their responsibility often is to "triage"
cases, that is, refer children who need further
evaluation to specialists. Many, however, are involved
in treating children and adolescents. They may be
greatly aided by various diagnostic aids such as brief
questionnaires that can be completed in the waiting
room of the pediatrician, the school counseling office,
or some other community setting. Ideally, these
screening questionnaires would be accompanied by a
clear guide on interpreting results and identifying what
kind of score or behavior would normally indicate a
need for referral to a professional.

138


Children and Mental Health

Some of the questionnaires that specifically address
mood disorders are shown in Figure 3-l. Other ques-
tionnaires, such as the Adolescent Antisocial Self-
Report Behavior Checklist (Kulik et al., 1968), the
Eyberg Child Behavior Inventory (Eyberg & Robinson,
1983), and the Family Interaction Coding Pattern
(Patterson, 1982), assess antisocial behavior. Adults
and teachers can use instruments such as the Child
Behavior Checklist (Achenbach & Edelbrock, 1983) to
assess a relatively full range of behavioral and
emotional symptoms and disorders from the perspective
of adult informants. The Minnesota Multiphasic
Personality Inventory-2 (MMPI-2; Hathaway &
McKinley, 1989) and the Millon Adolescent Personal-

Treatment Strategies

Children and adolescents receive most of the traditional
treatments described in Chapter 2, particularly psycho-
social treatments, such as psychotherapies, and various
medications. Specific psychosocial and pharma-
cological treatment approaches are described in
subsequent sections on specific mental disorders. Much
of the research, however, has been conducted on adults.
with results extrapolated to children. Some of the
treatments, such as interactive or play therapy with
young children, are unique to clinical work with this
group, while others, such as individual psychotherapy
with adolescents, are sim& to clinical work with
adults. Many of the treatment interventions have been

Figure 3-1. Questionnaires used to assess childhood mood disorders

Title

The Children's Depression inventory
WI)
Beck Depression Inventory
WI)
Reynolds Adolescent Depression Scale
(RADS)
Children's Depression Scale
(CDS)
Center for Epidemiological Studies of Depression
(CES-D)
Kandel Depression Scale
WDS)
Zung Self-Rating Depression Scale
(SDS)
Diagnostic interview Schedule for Children
(DISC)

Source

Kovacs, 1985

Beck, Ward, Mendelson, Mock, & Erbaugh, 1961

Reynolds, 1986

Tisher & Lang, 1983

Radloff, 1977

Kandel 81 Davies, 1982

Zung, 1965

Shaffer & Fisher, 1998

ity Inventory (MAPI) (Millon et al., 1982)
questionnaires may be used with adolescents to assess
normal and abnormal personality function.

The advent of highly structured, computer-driven
assessment tools, such as the NIMH Diagnostic
Interview Schedule for Children, which comes in a
spoken version that can be given through headphones
to children and/or their parents (Shaffer et al., 1996a),
promises to greatly improve the ability of professionals
outside of the mental health field to obtain robust
diagnostic information, which can guide them in
decisions about further referral or treatment.

"packaged" together in particular arrangements for
delivery in specific clinical settings.

More attention is being paid to the value of
multimodal therapies, that is, the combination of
pharmacological and psychosocial therapies. While
research is limited, multimodal studies have shown
benefits for treatment of ADHD (see later section),
anxiety (Keamey & Silverman, 1998), and depression.
Tempering the value of psychotherapy as well as
pharmacotherapy, which is discussed below, is that the
efficacy of these therapies in the research setting is
greater than that in the real world. The problem of the

139


Mental Health: A Report of the Surgeon General

gap between research and clinical practice is discussed
in greater depth elsewhere in this chapter and in
Chapter 2.

Psychotherapy

The major types of psychotherapy for children are
supportive, psychodynamic, cognitive-behavioral, inter-
personal, and family systemic. With the exception of
the latter, these therapies originally were developed for
adults and then tailored for use in`children.
Most psychotherapies are deemed effective for
children and adolescents because they improve more
than with no treatment, as discussed later in this
chapter under Treatment Interventions (Casey &
Berman, 1985; Hazelrigg et al., 1987; Weisz et al.,
1987; Kazdin et al., 1990; Baer & Nietzel, 1991;
Grossman &Hughes, 1992; Shadish et al., 1993; Weisz
& Weiss, 1993; Weisz et al., 1995). But despite this
strong body of research on children comparing
treatment with no treatment, far less attention has been
paid to, and guidance provided about, the efficacy of a
given psychotherapy for a specific diagnosis (Lonigan
et al., 1998). In other words, it is not clear which
therapies are best for which conditions. The American
Psychological Association sought to rectify this
problem by convening two task forces, the second of
which exhaustively reviewed the professional literature
to evaluate the strength of the evidence for treating
individual disorders in children. The second task force
refined two sets of criteria against which to evaluate the
evidence: the first, and more rigorous, set of criteria
was for Well-Established Psychosocial Interventions,
while the other was for Probably Eficacious Psycho-
social Znterventions (Lonigan et al., 1998). The
findings of the task force's comprehensive evaluation
were published, disorder by disorder, in an entire issue
of the Journal of Clinical Child Psychology in June
1998. While findings relating to individual disorders
are presented in the next section of this chapter, this
was the overarching conclusion: ". . . the majority of
these [psychosocial] interventions do not meet criteria
for the highest level of empirical support, the well-
established criteria" (Lonigan et al., 1998). The
problem, according to these authors, is that too few

well-controlled studies have been performed for each
disorder. To meet the criteria for a Well-Established
Psychosocial Intervention, there must be at least two
well-conducted group-design studies conducted by
different teams of researchers, among other criteria.4
Hereafter, these criteria are referred to as the American
Psychological Association Task Force Criteria.
Some other general points are warranted about the
value of psychotherapies for children. Psychotherapies
are especially important alternatives for those children
who are unable to tolerate, or whose parents prefer
them not to take, medications. They also are important
for conditions for which there are no'medications with
well-documented efficacy. They also are pivotal for
families under stress from a child's mental disorder.
Therapies can serve to reduce stress in parents and
siblings and teach parents strategies for managing
symptoms of the mental disorder in their child (see
later sections on Disruptive Disorders and Home-Based
Services).

Psychopharmacology

Dramatic increases have occurred over the past decade
in the use of pharmacological therapies for children and
adolescents with mental disorders, but research has
lagged behind the surge in their use (Jensen et al.,
1999). Our gaps in knowledge span three areas in
particular. First, for most prescribed medications, there
are no studies of safety and efficacy for children and
adolescents. This is true for medications for mental
disorders as well as for somatic disorders. Depending
on the specific medication, evidence may be lacking for
short-term, or most commonly, for long-term safety and
efficacy. The problem is even more pronounced with
newer medications,  most of which have been
introduced into the market for adults. Only in the case
of psychostimulants for ADHD is there an adequate
body of research on their safety and efficacy in children
and adolescents, albeit short-term information only
(Greenhill et al., 1998) (see later section on ADHD).
Second, there is often limited information about
pharmacokinetics, that is, drug concentrations in body

4 The criteria are listed in Chapter 1.

140


fluids and tissues over time (Clein & Riddle, 1996).
Most of what is known about pharmacokinetics comes
from studies of adults. But pediatric pharmacokinetic
studies are crucial to identifying the appropriate dose
and dose frequency for children of different ages and
body sizes. Third, the combined effectiveness of
pharmacological and psychosocial treatments, that is,
multimodal treatments, is seldom studied. Multimodal
treatments have the potential to yield dose reductions
in pharmacological treatments, thereby improving the
side-effect profile, parental acceptance, and patient
compliance.

  The dearth of research on children and adolescents
has allowed for widespread "off-label" use of
medications. This .means that, for this population,
physicians who are prescribing a given drug do not
have the benefit of research and drug labeling
information developed by the sponsor and approved by
the Food and Drug Administration (FDA). Under U.S.
food and drug law, a drug is approved by the FDA only
for a defined population. Yet after its approval and
market availability, physicians are at liberty to
prescribe it for anyone, even though the sponsor only is
allowed to market the drug for the approved population
(which typically is adults) (FDA, 1998). Fortunately,
there is a large body of clinical experience with
children and adolescents to guide prescribing practices,
despite few controlled studies (Green, 1996).
There are several reasons for the paucity of
research on medications for children and adolescents.
One is greater caution on the part of both the medical
profession and parents to experiment with children or
to prescribe drugs with potentially serious side effects.
Another reason is the need for compliance with dosing
requirements of the clinical trial protocol. When
children are research subjects, enforcing compliance is
generally perceived to be more difficult. Researchers
must rely on parents to assess the degree of
compliance. A final reason is the cost of research. Once
drugs have reached the market for adults, pharmaceuti-
cal companies have fewer financial incentives to
conduct expensive and methodologically demanding
studies with children, to whom drugs may be given

Despite the relative lack of information concerning
safety and efficacy of psychotropic agents in children,
six scientific reviews have been completed recently;
these reviews comprehensively surveyed all available
published research concerning the safety and efficacy
of psychotropic medication, focusing on six general
classes of medication: the psychostimulants (Greenhill
et al., 1998), the mood stabilizers and antimanic agents
(Ryan et al., 1999), the selective serotonin reuptake
inhibitors (SSRIs) (Emslie et al., 1999), antidepressants
(Geller et al., 1998), antipsychotic agents (Campbell et
al., 1999), and other miscellaneous agents (Riddle et
al., 1998).

141

Review of this comprehensive body of research
evidence indicates strong support for the safety and
efficacy of several classes of agents for several
conditions,  specifically, SSRIs for childhood/
adolescent obsessive-compulsive disorder, and the
psychostimulants for ADHD. For many other disorders
and medications, however, information fromrigorously
controlled trials is sparse or altogether absent (see
Figure 3-2). Further, only in the area of ADHD is in-
formation now emerging on longer term safety and
efficacy, as well as on the merits of combining
psychopharmacologic  and psychotherapeutic
treatments.

Given the inadequacy of efficacy data for most
nonstimulant psychotropics, studies are needed for the
majority of agents. However, efficacy data appear to be
most urgently needed for SSRIs, mood stabilizers, and
novel antipsychotics, since the level of usage of these
medications appears to be highest among the growing
list of psychotropic medications used in youth (Fisher
& Fisher, 1996). In contrast to adult psycho-
pharmacology that is focusing on differential efficacy
and speed of onset of these categories of psychotropics,

Children and Mental Health

through off-label prescribing. The problem has been
significant enough to have galvanized Congress into
passing legislation, the FDA Modernization Act of
1997, to create financial incentives for drug sponsors to
conduct research with pediatric subjects [FDA, 1999
Title 21 USC 505A(g)]. The FDA Modernization Act
may help alleviate this problem, but it is too early to
tell.


Mental Health: A Report of the Surgeon General

Figure 3-2. Grading the Level of Evidence for Efficacy of Psychotropic Drugs in Children

                                                                    Estimated
                                                         Frequency
                                 Level of Supportlng Data            of Use

                    j Short-Term j Long-Temt j Short-Term j Long-Term I
   Category           Indication    t Efficacy f Efficacy f Safety j Safety j Rank
                                I          I         I         I         I
Stimulants        ADHD           I    A    I    B    I    A    I    A    I    1

Selective Serotonin   Major depression       B j C j A j C j
Reuptake inhibitors  OCD
           Anxiety disorders  I ; I ; I ; I ; I 2
                          I        I       I       I       I

Central Adrenergic   Tourette syndrome
Agonists         ADHD     I F I E I ; I "c I 3
                          I        I       I       I       I

Valproate and      Bipolar disorders
Carbamazepine    Aggressive conduct  ) c .c I c I A I A I 4
                                 I    C    I    A   I    A    I
                                       I
Tricyclic        Major depression
Antidepressants    ADHD     I ; I g I ; I ; I 5
                           I                      I       I

Benzodiazepines    Anxiety disorders     I    C        C       C    I    C    I    6

Antipsychotics    Childhood schizophrenia I       I      I      I      I
            and psychoses
           Tourette syndrome  I ; I g I ; I ; I 7
                           I        I       I       I       I
                                                                      I          I
Lithium        Bipolar disorders
           Aggressive conduct  1 ; 1 ; 1 ; 1 ; 1 8
                           I        I       I       I       I

Key: A = 12 randomized controlled trials (RCTs).
   B = At least 1 RCT.
  C = Clinical opinion, case reports, and uncontrolled trials.

Source: Jensen et al., 1999

pediatric psychopharmacology needs basic studies of
efficacy.

Additional information on specific medication
treatment is presented in the succeeding sections,
providing more detailed discussion of particular
disorders. Indepth information is presented on two
disorders where a great deal of research has been done,
namely, ADHD and major depressive disorder,
followed by briefer discussions of other childhood
mental disorders.

Attention-Deficit/Hyperactivity
Disorder

As its name implies, attention-deficit/hyperactivity
disorder (ADHD) is characterized by two distinct sets
of symptoms: inattention and hyperactivity-impulsivity
                          .

(see Table 3-3). Although these problems usually occur
together, one may be present without the other to
qualify for a diagnosis (DSM-IV). Inattention or
attention deficit may not become apparent until a child
enters the challenging environment of elementary
school. Such children then have difficulty paying
attention to details and are easily distracted by other
events that are occurring at the same time; they find it
difficult and unpleasant to finish their schoolwork; they
put off anything that requires a sustained mental effort;
they are prone to make careless mistakes, and are
disorganized, losing their school books and assign-
ments; they appear not to listen when spoken to and
often fail to follow through on tasks (DSM-IV; Waslick
8z Greenhill, 1997).

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Children and Mental Health

fable 3-3. DSM-IV criteria for Attention-Deficit/Hyperactivity Disorder

7

' A.

,

1

Either (1) or (2):

(1) six (or more) of the following symptoms of inattention have persisted for at least 6 months to a degree that
is maladaptive and inconsistent with developmental level:
  lnatten tion

(a) often fails to give close attention to details or makes careless mistakes in schoolwork, work, or other
  activities
(b) often has difficulty sustaining attention in tasks or play activities
(c) often does n?t seem to listen when spoken to directly
(d) often does not follow through on instructions and fails to finish schoolwork, chores, or duties in the
workplace (not due to oppositional behavior or failure to understand instructions)
(e) often has dlff iculty organizing tasks and activities
(f) often avoids, dislikes, or is reluctant to engage in tasks that require sustained mental effort (such as
  schoolwork or homework)
(g) ;)fte;)loses things necessary for tasks or activities (e.g., toys, school assignmen;s, pencils, books, or
(h) is often easily distracted by extraneous stimuli
(i)  is often forgetful in daily activities

(2) six (or more) of the following symptoms of hyperactivity-impulsivity have persisted for at least 6 months
to a degree that is maledaptive and inconsistent with developmental level:

Hyperactivity

(a) often fidgets with hands or feet or squirms in seat
(b) often leaves seat in classroom or in other situations in which remaining seated is expected
(c) often runs about or climbs excessively in situations in which it is inappropriate (in adolescents or adults,
may be limited to subjective feelings of restlessness)

(d) often has difficulty playing or engaging in leisure activities quietly
(e) is often "on the go" or often acts as if "driven by a motor"
(f) often talks excessively     '

lmpulsivity

(g) often blurts out answers before questions have been completed
(h) often has difficulty awaiting turn
(i) often interrupts or intrudes on others (e.g., butts into conversations or games)

                                                                           I
B. Some hyperactive-impulsive or inattentive symptoms that cause impairment were present before age 7 years.  )

C. Some impairment from the symptoms is present in two or more settings (e.g., at school [or work] and at home).   I

D. There must be clear evidence of clinically significant impairment in social, academic, or occupational
  functioning.

E. The symptoms do not occur exclusively during the course of a pervasive developmental disorder,
schizophrenia, or other psychotic disorder and are not better accounted for by another mental disorder
(e.g., mood disorder, anxiety disorder, dissociative disorder, or a personality disorder).

143


Mental Health: A Report of the Surgeon General

The symptoms of hyperactivity may be apparent in
very young preschoolers and are nearly always present
before the age of 7 (Halperin et al., 1993; Waslick &
Greenhill, 1997). Such symptoms include fidgeting,
squirming around when seated, and having to get up
frequently to walk or run around. Hyperactive children
have difficulty playing quietly, and they may talk
excessively. They often behave in an inappropriate and
uninhibited way, blurting out answers in class before
the teacher's question has been completed, not waiting
their turn, and interrupting often or intruding on others'
conversations or games (Waslick & Greenhill, 1997).
Many of these symptoms occur from time to time
in normal children. However, in children with ADHD
they occur very frequently and in several settings, at
home and at school, or when visiting with friends, and
they interfere with the child's functioning. Children
suffering from ADHD may perform poorly at school;
they may be unpopular with their peers, if other
children perceive them as being unusual or a nuisance;
and their behavior can present significant challenges
for parents, leading some to be overly harsh (DSM-IV).
Inattention tends to persist through childhood and
adolescence into adulthood, while the symptoms of
motor hyperactivity and impulsivity tend to diminish
with age. Many children with ADHD develop learning
difficulties that may not improve with treatment
(Mannuzza et al., 1993). Hyperactive behavior is often
associated with the development of other disruptive
disorders, particularly conduct and oppositional-defiant
disorder (see Disruptive Disorders). The reason for the
relationship is not known. Some believe that the
impulsivity and heedlessness associated with ADHD
interfere with social learning or with close social bonds
with parents in a way that predisposes to the
development of behavior disorders (Barkley, 1998).
  Even though a great many children with this
disorder ultimately adjust (Mannuzza et al., 1998),
`some-especially those with an associated conduct or
oppositional-defiant disorder-are more likely to drop
out of school and fare more poorly in their later careers
than children without ADHD. As they grow older,

some teens who have had severe ADHD since middle
childhood experience periods of anxiety or depression.
This seems to be especially common in children whose
predominant symptom is inattention (Morgan et al.,
1996). Excellent reviews of ADHD can be found in
DSM-IV and other sources.'

Prevalence

ADHD, which is the most commonly diagnosed
behavioral disorder of childhood, occurs in 3 to 5
percent of school-age children -in ,a 6-month period
(Anderson et al., 1987; Bird et al., 1988; Esser et al.,
1990; Pelham et al., 1992; Shaffer et al., 1996c;
Wolraich et al., 1996). Pediatricians report that
approximately 4 percent of their patients have ADHD
(Wolraich et al., 1990), but in practice the diagnosis is
often made in children who meet some, but not all, of
the criteria recommended in DSM-IV (Wolraich et al.,
1990) (see also Treatment later in this section). Boys
are four times more likely to have the illness than girls
are (Ross & Ross, 1982). The disorder is found in all
cultures, although prevalences differ; differences are
thought to stem more from differences in diagnostic
criteria than from differences in presentation
(DSM-IV).

Causes

The exact etiology of ADHD is unknown, although
neurotransmitter deficits, genetics, and perinatal
complications have been implicated. In the early post-
World War Ii years, a number of pediatricians,
neurologists, and child psychiatrists noted that brain-
damaged children were often hyperactive (Strauss &
Lehtinen, 1947; Eisenberg, 1957; Laufer & Denhoff,
1957). These observations led to the diagnostic concept
of "minimal brain damage" (Wender, 197 l), which was
thought to be characterized by hyperactivity, inat-
tention, learning difficulties, and a wide variety of
behavior problems. However, large epidemiological
studies (Rutter & Quinton, 1977) of grossly brain-
damaged children with cerebral palsy, epilepsy, and so

5 Taylor, 1994; Cantwell, 1996; Waslick & Greenhill, 1997;
Barkley, 1998; and MH Consensus Statement 110, 1998.

144


Children and Mental Health

forth, did not find an excess of hyperactivity, and more
recent imaging studies have found no evidence of gross
brain damage in children with ADHD (Swanson et al.,
1998). The past view that ADHD is a form of minimal
brain damage has therefore been abandoned by experts.
Many brain-damaged children are, if anything,
significantly underactive.

In the late 1970s it was postulated that the core
problem in hyperkinetic children was one of inattention
(Douglas & Peters, 1979). This view led, in 1980, to
the adoption, in the official DSM-III (American
Psychiatric Association, 1980) nomenclature, of the
new diagnostic label attention-deficit disorder.
Because the symptoms of ADHD respond well to
treatment with stimulants, and because stimulants
increase the availability of the neurotransmitter
dopamine, the "dopamine hypothesis" has gained a
wide following. The dopamine hypothesis posits that
ADHD is due to inadequate availability of dopamine in
the central nervous system. The neurotransmitter
dopamine plays a key role in initiating purposive
movement, increasing motivation and alertness,
reducing appetite, and inducing insomnia, effects that
are often seen when a child responds well to
methylphenidate. The dopamine hypothesis has thus
driven much of the recent research into the causes of
ADHD.

The fact that ADHD runs in families suggests that
inheritance is an important risk factor. Between 10 and
35 percent of children with ADHD have a first-degree
relative with past or present ADHD. Approximately
one-half of parents who had ADHD have a child with
the disorder (Biederman et al., 1995). Over the past
decade, a large number of twin studies have shown that,
when ADHD is present in one twin, it is significantly
more likely also to be present in an identical twin than
in a fraternal twin (Goodman & Stevenson, 1989).
These findings have led geneticists to estimate that
genes are important in a high proportion of children
with ADHD.

Research to pinpoint abnormal genes is honing in
on two genes: a dopamine-receptor (DRD) gene on

chromosome 11 and the dopamine-transporter gene
(DATl) on chromosome 5 (Cook et al., 1995; Smalley
et al., 1998). Several studies have found evidence that
children with ADHD have genetic variations in one of
the dopamine-receptor genes (DRD4), although the
.largest of these studies suggests that the presence of
such a variation is associated with only a modest
increase in the risk of developing ADHD (Smalley et
al., 1998). Several other studies have found evidence
for abnormalities of the dopamine-transporter gene
(DATl) in children with very severe forms of ADHD
(Cook et al., 1995; Gill et.al, 1997; Waldman et al,,
1998).

Yet for most children with ADHD, the overall
effects of these gene abnormalities appear small,
suggesting that nongenetic factors also are important.
Although none of the many imaging studies have found
evidence of gross brain damage, some investigators
have suggested that exposure to toxins, such as lead, or
episodes of oxygen deprivation for the fetus, as may
occur during some complications of pregnancy, may
adversely affect dopamine-rich areas of the brain.
These theories support observations that hyperactivity
and inattention are more common in children whose
mothers smoked during pregnancy (Nichols & Chen,
1981), in children who have been exposed to high
quantities of lead (Needleman et al., 1990), and in
children who had a lack of oxygen in the neonatal
period (Whittaker et al., 1997).

Some investigators have noted that the parents of
hyperactive children are often overintrusive and
overcontrolling (Carlson et al., 1995). It has therefore
been suggested that such parental behavior is another
possible risk factor for ADHD. However, others have
noted that, when children are treated with
methylphenidate, there is a reduction in parental
negativity and intrusiveness. This suggests that the
observed overintrusive and overcontrolling behavior of
the parent is a response to the child's behavior rather
than the cause (Barkley et al., 1985).

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Mental Health: A Report of the Surgeon General

Treatment

The American Academy of Child and Adolescent
Psychiatry (AACAP) published "practice parameters"
(i.e., guidelines for clinical practice) on the diagnosis
and treatment of ADHD. The AACAP parameters
include an extensive literature review, detailed
descriptions of the clinical presentation of the disorder,
and recommendations for treatment. The practice
parameters state that "the cornerstones of treatment are
support and education of parents, appropriate school
placement, and pharmacology" (AACAP, 199 1). These
practice parameters evolved out of research relating to
two major types of treatment:  pharmacological
treatment and psychosocial treatment, particularly
behavioral modification, as well as multimodal
treatment, the combination of psychosocial and
pharmacological treatments.

Pharmacological Treatment
Psychostimulants

Pharmacological treatment with psychostimulants is the
most widely studied treatment for ADHD. Stimulant
treatment has been used for childhood behavioral
disorders since  the 1930s (Bradley, 1937).
Psychostimulants are highly effective for 75 to 90
percent of children with ADHD. At least four sep&ate
psychostimulant medications consistently reduce the
core features of ADHD in literally hundreds of
randomized controlled trials: methylphenidate, dextro-
amphetamine, pemoline, and a mixture of amphetamine
salts (Spencer et al., 1995; Greenhill, 1998a, 1998b;
Greenhill et al., 1998).

These medications are metabolized, leave the body
fairly quickly, and work for 1 to 4 hours. Administra-
tion is timed to meet the child's school schedule, to
help the child pay attention and meet his or her
academic demands, and to mitigate side effects. These
medications have their greatest effects on symptoms of
hyperactivity, impulsivity, and inattention and the
associated features of defiance, aggression, and
oppositionality.  They also improve classroom
performance and behavior and promote increased
interaction with teachers, parents, and peers. Small
effe.cts were found on learning and school achievement

(see reviews by Barkley, 1990; Pelham, 1993; Swanson
et a1.,1993, 1995b; Greenhill et al., 1998; Cantwell,
1996a; Spencer et al., 1996.) However, psychostimu-
lants do not appear to achieve long-term changes in
outcomes such as peer relationships, social or academic
skills, or school achievement (Pelham et al., 1998).
Children who do not respond to one stimulant may
respond to another (Elia et al., 199 1; Elia & Rapoport,
1991). Children should be reevaluated without the
medication to see if stimulant treatment is still
indicated. Many families choose to have their child
take a "drug holiday" on weekends and vacations to
reduce overall exposure, but the utility of this strategy
has not been demonstrated (AACAP, 1991).

Dosing

Stimulants are usually started at a low dose and
adjusted weekly (AACAP, 1991). A recent study
demonstrated that the practice of dosing
methylphenidate on the basis of body weight fails to
predict the optimal dose of medication (Rapport &
Denney, 1997). One of the goals of the recently
completed NIMH Multimodal Treatment Study of
ADHD (described more fully below) was to develop
medication strategies to guide "best dose," dose
changes, management of side effects, and integration
with other treatments (Greenhill et al., 1996).

Side Effects

Common stimulant side effects include insomnia,
decreased appetite, stomach aches, headaches, and
jitteriness. Some children may develop tics, but a recent
study suggests that they disappear with continued
treatment (Gadow et al., 1995). Rebound activation
(i.e.,  a sudden increase in attention deficit and
hyperactivity) has been noted anecdotally after the
child's last dose of medication wears off (Johnston et
al., 1988). Most of the side effects are mild, recede over
time, and respond to dose changes. Children rarely
experience cognitive impairment, which, if it does
occur, can be resolved with reduction or cessation of
the drug (Cantwell, 1996). A few cases of psychosis
have been reported. Pemoline has been associated with
hepatotoxicity, so monitoring of liver function is

.46


Children and Mental Health

necessary. Two studies have shown no long-term
effects of stimulants on later height or weight (Klein &
Mannuzza, 1988; Vincent et al., 1990). Nonetheless,
regular precautionary monitoring of weight and height
for children on stimulants is recommended.

Other Medications

For children with ADHD who do not respond to
stimulants (10 to 30 percent) or cannot tolerate the side
effects, there are other .useful medications. The
antidepressant bupropion has been found to be superior
to placebo, although the response is not as strong as
that found with stimulants (Cantwell, 1998). Bupropion
can also be used as an adjunct to augment stimulant
treatment. Well-controlled trials have shown tricyclic
antidepressants to be superior to placebo but less
effective than stimulants (Elia et al., 1991; Elia &
Rapoport, 1991). Reports of sudden death of a few
children in the early 1990s on the tricyclic compound
desipramine led to great caution with the use of
tricyclics in children (Riddle et al., 1991).
Considerable controversy surrounds the use of
central alpha-adrenergic blocking drugs, such as
clonidine and guanfacine, to treat ADHD. There is
some evidence that clonidine is effective for ADHD
when it occurs with a tic disorder (Hunt, 1987; Hunt et
al., 1990, 1995). Caution is warranted in'view of the
four cases of sudden death that have been reported in
children taking methylphenidate and clonidine together
and of a number of reports of nonfatal cardiac side
effects in children taking clonidine alone or in
combination (Swanson et al., 1995a).
  Neuroleptics have been found to be occasionally
effective (Green, 1995), yet the risk of movements
disorders, such as tardive dyskinesia, makes their use
problematic. Lithium, fenfluramine, or benzodiazapines
have not been found to be effective treatments for
ADHD (Cantwell, 1996a; Green, 1995), nor have
SSRIs, such as fluoxetine (Goldman et al., 1998).
Furthermore, more than 20 studies have shown that
dietary manipulation (e.g., the Feingold diet) is not
efficacious (Mattes & Gittelman, 1981), and controlled
studies failed to demonstrate that sugar exacerbates the

symptoms of children with ADHD (Milich & Pelham,
1986).

Psychosocial Treatment

Important options for the management of ADHD are
psychosocial treatments, particularly in the form of
training in behavioral techniques for parents and
teachers. Behavioral techniques, which are described
more fully below, typically employ "time-out," point
systems and contingent attention (adults reinforcing
appropriate behavior by paying attention to it).
Psychosocial treatments are useful for the child who
does not respond to medication at all or for whom the
therapeutic benefits of the midication have worn off
and for the child who responds only partially to
medication or cannot tolerate medication. In addition,
some families express a strong preference not to use
medication. Even children who are receiving
medication may continue to have residual ADHD
symptoms or symptoms from other disorders, such as
oppositional defiant disorder or depression, which
make specialized child management skills necessary
and helpful (see next section, Multimodal Treatments).
Furthermore, children with ADHD can present a
challenge that puts significant stress on the family.
Skills training for parents can help reduce this stress on
parents and siblings.

Behavioral Approaches

The main psychosocial treatments for ADHD are
behavioral training for parent and teacher, as well as
systematic programs of contingency management (this
behavioral technique is described in more detail in the
Treatment section later in this chapter). Of these
options, systematic programs of intensive contingency
management conducted in specialized classrooms or
summer camps with the setting controlled by highly
trained individuals is the most effective (Abramowitz
et al., 1992; Carlson et al., 1992; Pelham & Hoza,
1996). The efficacy of behavioral training of teachers
is well-established, while the evidence for parent
training is less solid, according to the criteria, noted
earlier, promulgated by the American Psychological

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Mental Health: A Report of the Surgeon General

Association Task Force (Pelham et al., 1998). There is,
however, indirect support for the effectiveness of
parent training in the literature, demonstrating the
efficacy of parent training for children with
oppositional defiant disorder who share many
characteristics with children who have ADHD (see
section on Disruptive Disorders).

A number of studies have compared parent training
(Gittelman et al., 1980; Firestone et al., 1986; Horn et
al., 1987, 1990, 1991; Pelham et al., 1988) or school-
based behavioral modification (Gittelman et al., 1980;
Pelham et al., 1988) with the use of stimulants. Most of
the studies are of outpatient behavioral therapy
programs in which parents meet in groups and are
taught behavioral techniques such as time out, point
systems, and contingent attention. Teachers are taught
similar classroom strategies, as well as the use of a
daily report card for parents that evaluates the child's
in-school behavior. The improvements in the symptoms
of ADHD achieved with psychosocial treatments are
not as large as those found with psychostimulants
(Pelham et al., 1998). Behavioral interventions tend to
improve targeted behaviors or skills but are not as
helpful in reducing the core symptoms of inattention,
hyperactivity, or impulsivity. Questions remain about
the effectiveness of these treatments in other settings.
To be fully effective, treatments for ADHD need to be
conducted across settings (school, home, community)
and by different people (e.g., parents, teachers,
therapists)-a consistency and comprehensiveness that
can be hard to achieve.

Cognitive-Behavioral Therapy

Cognitive-behavioral therapy (CBT), primarily training
in problem solving and social skills, has not been
shown to provide clinically important changes in
behavior and academic performance of children with
ADHD (Pelham et al., 1998). However, CBT might be
helpful in treating symptoms of accompanying
disorders such as oppositional defiant disorder,
depression, or anxiety disorders (Abikoff, 1985;
Hinshaw & Ehardt, 1991; Lochman, 1992).

148

Psychoeducation

Although there are no studies evaluating the efficacy of
psychoeducation as a treatment modality for ADHD,
providing information to parents, children, and teachers
about ADHD and treatment options is considered
critical in the development of a comprehensive
treatment plan (AACAP, 1991). Educational
accommodations for children with ADHD are federally
mandated, and mental health providers are required to
ensure that patients and families have access to
adequate and appropriate educational resources.
Organizations such as Chiklren and Adults with
Attention Deficit Disorder (CHADD) and the National
Attention Deficit Disorder Association can be helpful
sources of information and support for families.

Multimodal Treatments

Many researchers and families have long suspected that
multimodal treatment-medication used together with
multiple psychosocial interventions in multiple
settings-should be more effective than medication
alone. Multimodal treatment has thus been used in the
absence of empirical support (Hechtman, 1993). To
determine whether multimodal treatment is indeed
effective, the recent NIMH Multimodal Treatment
Study of ADHD (called the MTA Study) examined
three experimental conditions: medication management
alone, behavioral treatment alone, or a combination of
medication and behavioral treatments. The study
compared the effectiveness of these three treatment
modes with each other and with standard care provided
in the community (the control group). The behavioral
treatment condition consisted of parent training, a
school intervention, and a summer treatment program.
The MTA Study was also designed to determine the
relative benefits of these treatments over time (Richters
et al., 1995). All subjects were treated for 14 months
and then followed for an additional 22 months.

Results of the MTA Study comparing the 1Cmonth
outcomes of 579 children randomly assigned to one of
the four treatment conditions were presented in the fall
of 1998 (MTA Cooperative Group, 1998). At 14
months, medication and the combination treatment
were generally more effective than the behavioral


treatment alone or the control treatment. Notably, the
combined treatment resulted in significant improve-
ment over the control condition in six outcome
areas-social skills, parent child relations, internalizing
(e.g.,  anxiety) symptoms,  reading achievement,
oppositional and/or aggressive symptoms, and parent
and/or consumer satisfaction-whereas the single
forms of treatment (medication or behavior therapy)
were each superior to the c&trol condition in only one
to two of these domains. The conclusions from this
major study are that carefully managed and monitored
stimulant medication,  alone or combined with
behavioral treatment, is effective for ADHD over a
period of 14 months. Addition of behavioral treatment
yields no additional benefits for core ADHD symptoms
but appears to provide some additional benefits for
non-ADHD-symptom outcomes.

Treatment Controversies

Overprescription of Stimulants

Concerns have been raised that children, particularly
active boys, are being overdiagnosed with ADHD and
thus are receiving psychostimulants unnecessarily.
However, recent reports found little evidence of
overdiagnosis of ADHD or overprescription of
stimulant medications (Goldman et al., 1998; Jensen et
al., 1999). Indeed, fewer children (2 to 3 percent of
school-aged children) are being treated for ADHD than
suffer from it. Treatment rates are much lower for
selected groups such as girls, minorities, and children
receiving care though public service systems (Bussing
et al., 1998a, 1998b). However, there have been major
increases in the number of stimulant prescriptions since
1989 (Hoagwood et al., 1998), and methylphenidate is
being manufactured at 2.5 times the rate of a decade
ago (Goldman et al., 1998). Most researchers believe
that much of the increased use of stimulants reflects
better diagnosis and more effective treatment of a
prevalent disorder. Medical and public awareness of
the problem of ADHD has grown considerably, leading
to longer treatment, fewer interruptions in treatment,
and increased treatment of adults. Adolescents and

Children and Mental Health

younger girls with ADHD, who were underdiagnosed
in the past, are being identified and treated.
Nonetheless, some of the increase in use may
reflect inappropriate diagnosis and treatment. In one
study, the rate of stimulant treatment was twice the rate
of parent-reported ADHD, based on a standardized
psychiatric interview (Angold & Costello, 1998). While
many children who do meet the full criteria for ADHD
are not being treated, the majority of children and
adolescents who are receiving stimulants did not fully
meet the criteria. These findings may reflect a failure of
proper, comprehensive evaluation and diagnosis rather
than a failure of the diagnostic criteria, which are clear
and validated by research (Angold & Costello, 1998).
A diagnosis of ADHD requires the presence of
impairing ADHD symptoms in multiple settings for at
least 6 months. Although fidgeting and not paying
attention are normal, common childhood behaviors,
DSM-IV criteria reserve a diagnosis of ADHD for
children in whom such frequent behavior produces
persistent and pervasive dysfunction. An adequate
diagnostic evaluation requires histories to be taken
from multiple sources (parents, child, teachers), a
medical evaluation of general and neurological health,
a full cognitive assessment including school history,
use of parent and teacher rating scales, and all
necessary adjunct evaluation (such as assessment of
speech, language). These evaluations take time and
require multiple clinical skills. Regrettably, there is a
dearth of appropriately trained professionals.
  Family practitioners are more likely than either
pediatricians or psychiatrists to prescribe stimulants
and less likely to use diagnostic services, provide
mental health counseling, or provide followup care
(Hoagwood et al., 1998). The American Academy of
Pediatrics published a policy statement in 1996 on the
use of medication for children with attentional
disorders, concluding that use of medication should not
be considered the complete treatment program for
children with ADHD and should be prescribed only
after a careful evaluation (American Academy of
Pediatrics Committee on Children With Disabilities and
Committee on Drugs, 1996).

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Mental Health: A Report of the Surgeon General

Safety of Long-Term Stimulant Use
Even though the MTA Study found no safety issues
over a 14-month period (Greenhill et al., 1998),
concerns have been raised about the longer term safety
of stimulant treatment. Since ADHD has an early onset
and requires an extended course of treatment, research
is needed to examine the long-term safety of treatment
and to investigate whether other forms of treatment
could be combined with psychostimulants to lower
their dose as well as to reduce other problem behaviors
found with ADHD. Such combined treatments could be
targeted for symptoms of disorders that often
accompany ADHD, such as conduct disorder, substance
abuse, and learning disabilities, and could be targeted
to improve overall functioning (Laufer, 1971;
Gittelman et al., 1985).

Because stimulants are also drugs of abuse and
because children with ADHD are at increased risk for
a substance abuse disorder, concerns have also been
raised about the potential for abuse of stimulants by
children taking the medication or diversion of the drug
to others. While stimulants clearly have abuse
potential, the rate of lifetime nonmedical methyl-
phenidate use has not significantly increased since
methylphenidate was introduced as a treatment for
ADHD, suggesting that abuse is not a major problem
(Goldman et al., 1998). Case reports describing abuse
by children prescribed stimulants for ADHD are rare
(Hechtman, 1985).

Depression and Suicide in Children
and Adolescents
In children and adolescents, the most frequently
diagnosed mood disorders are major depressive
disorder, dysthymic disorder, and bipolar disorder.
Because mood disorders such as depression
substantially increase the risk of suicide, suicidal
behavior is a matter of serious concern for clinicians
who deal with the mental health problems of children
and adolescents. The incidence of suicide attempts
reaches a peak during the midadolescent years, and
mortality from suicide, which increases steadily
through the teens, is the third leading cause of death at
that age (CDC, 1999; Hoyert et al., 1999). Although

suicide cannot be defined as a mental disorder, the
various risk factors-especially the presence of mood
disorders-that predispose young people to such
behavior are given special emphasis in this section, as
is a discussion of the effectiveness of various forms of
treatment. The evidence is strong that over 90 percent
of children and adolescents who commit suicide have
a mental disorder, as explained later in this section.
Major depressive disorder is a serious condition
characterized by one or more major depressive
episodes. In children and adolescents, an episode lasts
on average from 7 to 9 months (Birmaher et al., 1996a,
1996b) and has many clinical features similar to those
in adults. Depressed children are sad, they lose interest
in activities that used to please them, and they criticize
themselves and feel that others criticize them. They feel
unloved, pessimistic, or even hopeless about the future;
they think that life is not worth living, and thoughts of
suicide may be present. Depressed children and
adolescents are often irritable, and their irritability may
lead to aggressive behavior. They are indecisive, have
problems concentrating, and may lack energy or
motivation; they may neglect their appearance and
hygiene; and their normal sleep patterns are disturbed
(DSM-IV).

Despite some similarities, childhood depression
differs in important ways from adult depression.
Psychotic features do not occur as often in depressed
children and adolescents, and when they occur,
auditory hallucinations are more common than
delusions (Ryan et al., 1987; Birmaher et al., 1996a,
1996b). Associated anxiety symptoms, such as fears of
separation or reluctance to meet people, and somatic
symptoms,  such as general aches and pains,
stomachaches, and headaches, are more common in
depressed children and adolescents than in adults with
depression (Kolvin et al., 1991; Birmaher et al., 1996a,
1996b).

Dysthymic disorder is a mood disorder like major
depressive disorder, but it has fewer symptoms and is
more chronic. Because of its persistent nature, the
disorder is especially likely to interfere with normal
adjustment. The onset of dysthymic disorder (also
called dysthymia) is usually in childhood or

150


adolescence (Akiskal, 1983; Klein et al., 1997). The
child or adolescent is depressed for most of the day, on
most days, and symptoms continue for several years.
The average duration of a dysthymic period in children
and adolescents is about 4 years (Kovacs et al., 1997a).
Sometimes children are depressed for so long that they
do not recognize their mood as out of the ordinary and
thus may not complain of feeling depressed. Seventy
percent of children and adolescents with dysthymia
eventually experience an episode of major depression6
(Kovacs et al., 1994). When a combination of major
depression and dysthymia occurs, the condition is
referred to as double depression.
Bipolar disorder is a mood disorder in which
episodes of mania alternate with episodes of
depression. Frequently, the condition begins in
adolescence. The first manifestation of bipolar illness
is usually a depressive episode. The first manic features
may not occur for months or even years thereafter, or
may occur either during the first depressive illness or
later, after a symptom-free period (Strober et al., 1995).
The clinical problems of mania are very different
from those of depression. Adolescents with mama or
hypomania feel energetic, confident, and special; they
usually have difficulty sleeping but do not tire; and
they talk a great deal, often speaking very rapidly or
loudly. They may complain that their thoughts are
racing. They may do schoolwork quickly and creatively
but in a disorganized, chaotic fashion. When manic,
adolescents may have exaggerated or even delusional
ideas about their capabilities and importance, may
become overconfident, and may be "fresh" and
uninhibited with others; they start numerous projects
that they do not finish and may engage in reckless or
risky behavior, such as fast driving or unsafe sex.
Sexual preoccupations are increased and may be
associated with promiscuous behavior.
  Reactive depression, also known as adjustment
disorder with depressed mood, is the most common
form of mood problem in children and adolescents. In

6 Major depression refers to conditions marked by a major
depressive episode, such as major depressive disorder, bipolar
disorder, and related conditions. The word "major" refers to the
number of symptoms. See Chapter 4 for DSM-IV diagnostic criteria.

Children and Mental Health

children suffering from reactive depression, depressed
feelings are short-lived and usually occur in response to
some adverse experience, such as a rejection, a slight,
a letdown, or a loss. In contrast, children may feel sad
or lethargic and appear preoccupied for periods as short
as a few hours or as long as 2 weeks. However, mood
improves with a change in activity or an interesting or
pleasant event. These transient mood swings in reaction
to minor environmental adversities are not regarded as
a form of mental disorder.

Conditions Associated Wjth Depression
Roughly two-thirds of childretrand adolescents with
major depressive disorder also have another mental
disorder (Angold & Costello, 1993; Anderson &
McGee, 1994). The most commonly associated
disorders are dysthymia (see above), an anxiety
disorder, a disruptive or antisocial disorder, or a
substance abuse disorder. When more than one
diagnosis is present, depression is more likely to begin
after the onset of the accompanying disorder, except
when that disorder is substance abuse (Biederman et
al., 1995; Kessler&Walters, 1998). This suggests that,
in some cases, depression may arise in response to the
associated disorder. In other instances, such as the co-
occurrence of conduct disorder and depression, the two
may arise independently in response to inadequate
maternal supervision and control, raising the possibility
that parental behavior may be a risk factor for both
conditions (Downey & Coyne, 1990; Rutter &
Sandberg, 1992; Harrington, 1994).

Prevalence

Major Depression

Population studies show that at any one time between
10 and 15 percent of the child and adolescent
population has some symptoms of depression (Smucker
et al., 1986). The prevalence of the full-fledged
diagnosis of major depression among all children ages
9 to 17 has been estimated at 5 percent (Shaffer et al.,
1996c). Estimates of l-year prevalence in children
range from 0.4 and 2.5 percent and in adolescents,
considerably higher (in some studies, as high as 8.3

151


Mental Health: A Report of the Surgeon General

percent) (Anderson & McGee, 1994; Lewinsohn et al.,
1994a; Garrison et al., 1997; Kessler&Walters, 1998).
For purposes of comparison, l-year prevalence in
adults is about 5.3 percent (Murphy et al., 1988;
Rorsman et al., 1990; Regier et al., 1993).

Dysthymic Disorder

The prevalence of dysthymic disorder in adolescents
has been estimated at around 3'percent (Garrison et al.,
1997). Before puberty, major depressive disorder and
dysthymic disorder are equally common in boys and
girls (Rutter, 1986). But after age 15, depression is
twice as common in girls and women as in boys and
men (Weissman & Klerrnan, 1977; McGee et al., 1990;
Linehan et al., 1993).

Suicide

In 1996, the age-specific mortality rate from suicide
was 1.6 per 100,000 for lo- to 14-year-olds, 9.5 per
100,000 for 15- to 19-year-olds (i.e., about six times
higher than in the younger age group; in this age group,
boys are about four times as likely to commit suicide
than are girls, while girls are twice as likely to attempt
suicide), compared with 13.6 per 100,000 for 20- to 24-
year-olds (CDC, 1999). Hispanic high school Students
are more likely than other students to attempt suicide
(CDC, 1998). There have been some notable changes
in these rates over the past few decades: since the early
196Os, the reported suicide rate among 15- to 19-year-
old males increased threefold but remained stable
among females in that age group and among lo- to 14-
year-olds (National Center for Health Statistics, 1998);
the rate among white adolescent males reached a peak
in the late 1980s (18.0 per 100,000 in 1986) and has
since declined somewhat (16.0 per 100,000 in 1997),
whereas among African American male adolescents,
the rate increased substantially in the same period
(from 7.1 per 100,000 in 1986 to 11.4 per 100,000 in
1997 (CDC, 1998). From 1979 to 1992, the Native
American male adolescent and young adult suicide rate
in Indian Health Service Areas was the highest in the
Nation, with a suicide rate of 62.0 per 100,000
(Wallace et al., 1996).

It has been proposed that the iise in suicidal
behavior among teenage boys results from increased
availability of firearms (Boyd, 1983; Boyd & Moscicki,
1986; Brent et al., 1987; Brent et al., 1991) and
increased substance abuse in the youth population
(Shaffer et al., 1996c; Birckmayer & Hemenway,
1999). However, although the rate of suicide by
firearms increased more than suicide by other methods
(Boyd, 1983; Boyd & Moscicki, 1986; Brent et al.,
1987), suicide rates also increased markedly in many
other countries in Europe, in Avstralia, and in New
Zealand, where suicide by firearms is rare.

Course and Natural History
Most children with depression experience a recurrence.
Twenty to 40 percent of depressed children relapse
within 2 years, and 70 percent will do so by adulthood
(Garber et al., 1988; Velez et al., 1989; Harrington et
al., 1990; Fleming et al., 1993; Kovacs et al., 1994;
Lewinsohn et al., 1994a; Garrison et al., 1997). The
reasons for relapse are not known, but there is some
evidence that experiencing a depression leaves behind
psychological "scars" that may increase vulnerability
throughout early life (see below).
The age of first onset of depression appears to play
a role in its course. Children who first become
depressed before puberty are at risk for some form of
mental disorder in adulthood, while teenagers who first
become depressed after puberty are most likely to
experience another episode of depression (Harrington
et al., 1990; McCracken, 1992a; Lewinsohn et al.,
1994a, 1994b; Rao et al., 1995). These differences in
outcome suggest that different mechanisms may lead to
superficially similar but inherently different clinical
conditions. Factors that worsen the prognosis for
depressed children and adolescents include depression
occurring in the context of conduct disorder (Harring-
ton et al., 1990; Asarnow et al., 1994) and living in
conflict-ridden families (Asamow et al., 1994).
Children and particularly adolescents who suffer from
depression are at much greater risk of committing
suicide than are children without depression (Shaffer et
al., 1996b).

153


The prognosis for dysthymia (Klein et al., 1997a)
is unfavorable, with most patients continuing to feel
depressed and to have social difficulties even after they
have apparently recovered. The prognosis for double
depressives (major depressive disorder plus dysthymia)
is worse than that for either condition alone (Kovacs et
al., 1994).

Twenty to 40 percent of adolescents with depres-
sion eventually develop bipolar disorder. Factors that
predict later bipolar disorder include young age at the
time of the first depressive episode, psychotic features
in the initial depression, a family history of bipolar
illness, and symptoms of hypomania developing during
treatment with antidepressant drugs (Garber et al.,
1988; Strober et al.`, 1993).

Causes

The precise causes of depression are not known.
Extensive research on adults with depression generally
points to both biological and psychosocial factors
(Kendler, 1995). However, there has been substantially
less research on the causes of depression in children
and adolescents. Further discussion of the risk factors
for depression can be found in Chapter 4, as well as the
preceding Overview of Risk Factors and Prevention
section.

Family and Genetic Factors

Much of the research on children and adolescents with
depression has been conducted with those who attend
mental health clinics and with patients who tend to
have the more severe and recurrent forms of
depression, and thus they may not be representative of
all children and adolescents with depression. With this
limitation, research has shown that between 20 and 50
percent of depressed children and adolescents have a
family history of depression (Puig-Antich et al., 1989;
Todd et al., 1993; Williamson et al., 1995; Kovacs,
1997b). Family research has found that children of
depressed parents are more than three times as likely as
children with nondepressed parents to experience a
depressive disorder (see Birmaher et al., 1996a, 1996b
for a review). They also are more vulnerable to other
mental and somatic disorders (Downey & Coyne,

Children and Mental Health

1990). Conversely, estimates of the proportion of
depressed parents who have a depressed child or
adolescent vary from approximately one in six to just
under a half (Hammen et al., 1990). It is not clear
whether the relationship between parent and childhood
depression derives from genetic factors, or whether
depressed parents create an environment that increases
the likelihood of a mental disorder developing in their
children (see below).

Gender Differences

One reason advanced to explain the greater prevalence
of depression in adolescent girls (see above) is that they
are more socially oriented, more dependent on positive
social relationships, and more vulnerable to losses of
social relationships than are boys (Allgood-Merten et
al., 1990). This would increase their vulnerability to the
interpersonal stresses that are common in teenagers.
There is also evidence that the methods girls use to
cope with stress may entail less denial and more
focused and repetitive thinking about the event (Nolen-
Hoeksema & Girgus, 1994). The higher prevalence,
therefore, could be a result of greater vulnerability,
combined with coping mechanisms different than those
of boys.

Biological Factors

Some of the core symptoms of depression, such as
changes in appetite and sleep patterns, are related to the
functions of the hypothalamus. The hypothalamus is, in
turn, closely tied to the function of the pituitary gland.
Abnormalities of pituitary function, such as increased
rates of circulating cortisol and hypo- or hyperthyroid-
ism, are well established features of depression in
adults (Goodwin & Jamison, 1990). However, far less
research has been done in this area among children and
adolescents (see Birmaher et al., 1996a, 1996b for a
review). It is in the .neuroendocrine area that most
research has been done on child and adolescent
depression (see Birmaher et al., 1996a, b). In suicidal
adults dysregulation of the serotonergic system is
common (Mann, 1998; Pine et al., 1995), making them
typically impulsive, intense, and given to extreme
reactions.  However, little is known about the

153


Mental Health: A Report of the Surgeon General

association between abnormal serotonin metabolism
and suicidal behavior in children and adolescents.

Cognitive Factors

For over two decades there has been considerable
interest in the relationship between a particular
"mindset" or approach to perceiving external events
and a predisposition to depression. The mindset in
question is known as a pessimistic "attribution bias"
(Abramson et al., 1978; Beck, 1987; Hops et al., 1990).
A person with this mindset is one who readily assumes
personal blame for negative events ("All the problems
in the family are my fault"), who expects that one
negative experience is part of a pattern of many other
negative events ("Everything I do is wrong"), and who
believes that a cunently negative situation will endure
permanently ("Nothing I do is going to make anything
better"). Such pessimistic individuals take a
characteristically negative view of positive events (i.e.,
that they are a result of someone else's effort, that they
are isolated events, and that they are unlikely to recur).
Individuals with this mindset react more passively,
helplessly, and ineffectively to negative events than
those without a pessimistic mindset (Seligman, 1975).
There is uncertainty over whether this mindset
precedes depression (and represents a permanknt style
of thinking as part of an individual's personality), is a
manifestation of depression that is only present when
the patient is depressed, and/or is a consequence or
"scar" of a previous, perhaps unnoticed, depressive
episode (Lewinsohn et al., 1981). This pessimistic
mode of thinking does not occur in children under age
5, which could be one of the reasons why depression
and suicide are rare in early childhood @holes et al.,
1980; Rotenberg, 1982).

  There is evidence that children and adolescents
who previously have been depressed may learn, during
their depression, to interpret events in this fashion. This
may make them prone to react similarly to negative
events experienced after recovery, which could be one
of the reasons why previously depressed children and
adolescents are at continuing risk for depression
(Nolen-Hoeksema et al., 1993).

Perceptions of hopelessness, negative views about
one's own competence, poor self- esteem, a sense of
responsibility for negative events, and the immutability
of these distorted attributions may contribute to the
hopelessness that has been repeatedly found to be
associated with suicidality (Ov&holser et al., 1995).

Risk Factors for Suicide and Suicidal Behavior
There is good evidence that over 90 percent of children
and adolescents who commit suicide have a mental
disorder before their death (Shaffer & Craft, 1999). The
most common disorders that predjspose to suicide are
some form of mood disorder, `with or without
alcoholism or other substance abuse problem, and/or
certain forms of anxiety disorder (Shaffer et al.,
1996b). Psychological postmortem studies also show
that a significant proportion of suicide victims suffered
from an anxiety disorder at the time of their death, but
the number of victims has been too small to yield
precise odds ratios for the calculation of an effect.
Although the rate of suicide is greatly increased in
schizophrenia, because of its rarity, it accounts for very
few suicides in the child and adolescent age group.
Controlled studies of completed suicide suggest
similar risk factors for boys and girls (Shafii et al.,
1985; Brent et al., 1988; Groholt et al., 1997), but with
marked differences in their relative importance (Shaffer
et al., 1996c).

Among girls, the most significant risk factor is the
presence of major depression, which, in some studies,
increases the risk of suicide 1Zfold. The next most
important risk factor is a previous suicide attempt,
which increases the risk approximately threefold.
Among boys, a previous suicide attempt is the most
potent predictor, increasing the rate over 30-fold. It is
followed by depression (increasing the rate by about
12-fold), disruptive behavior (increasing the rate by
twofold), and substance abuse (increasing the rate by
just under twofold) (Shaffer et al., 1996c).
Stressful life events often precede a suicide and/or
suicide attempt (de Wilde et al., 1992; Gould et al.,
1996). As indicated earlier, these stressful life events
include getting into trouble at school or with a law

154


enforcement agency; a ruptured relationship with a
boyfriend or a girlfriend; or a fight among friends.'
They are rarely a sufficient cause of suicide, but they
can be precipitating factors in young people.
Controlled studies (Gould et al., 1996; Hollis,
1996) indicate that low levels of communication
between parents and children may act as a significant
risk factor. While family discord, lack of family
warmth, and disturbed pai-entchild relationship are
commonly associated with child and adolescent
psychopathology (violent behavior, mood disorder,
alcohol and substance abuse disorders) (Brent et al.,
1994; Pfeffer et al., 1994), these factors do not play a
specific role in suicide (Gould et al., 1998).
Evidence has accumulated that supports the
observation that suicide can be facilitated in vulnerable
teens by exposure to real or fictional accounts of
suicide (Velting & Gould, 1997), including media
coverage of suicide, such as intensive reporting of the
suicide of a celebrity, or the fictional representation of
a suicide in a popular movie or TV show. The risk is
especially high in the young, and it lasts for several
weeks (Gould & Shaffer, 1986; Phillips et al., 1989).
The suicide of a prominent person reported on
television or in the newspaper or exposure to some
sympathetic fictional representation of suicide may also
tip the balance and make the at-risk individual feel that
suicide is a reasonable, acceptable, and in some
instances even heroic, decision (Gould & Shaffer,
1986).

The phenomenon of suicide clusters is presumed to
be related to imitation (Davidson, 1989). Suicide
clusters nearly always involve previously disturbed
young people who knew about each other's death but
rarely knew the other victims personally (Gould,
personal communication, 1999).

' The relationship between sexual orientation, depression, and
suicidal thoughts and behavior is not well understood. Several
studies suggest a link (Faullener & Cranston, 1998; Garofolo et al.,
1998; Garofolo et al., 1999).

Children and Mental Health

Consequences

Both major depressive disorder and dysthymic disorder
are inevitably associated with personal distress, and if
they last a long time or occur repeatedly, they can lead
to a circumscribed life with fewer friends and sources
of support, more stress, and missed educational and job
opportunities (Klein et al., 1997). The psychological
scars of depression include an enduring pessimistic
style of interpreting events, which may increase the risk
of further depressive episodes. Impairment is greater
for those with dysthymic disorder than for those with
major depression (Klein et a., 1997a), presumably
because of the longer duration of depression in
dysthymic disorder, which is also a prime risk factor
for suicide. In a lo- to 15year followup study of 73
adolescents diagnosed with major depression, 7 percent
of the adolescents had committed suicide sometime
later. The depressed adolescents were five times more
likely to have attempted suicide as well, compared with
a control group of age peers without depression
(Weissman et al., 1999).

Treatment

Depression
Psychosocial Interventions

To be deemed effective and approved by the American
Psychological Association, treatments for mental
disorders have to meet very strict criteria. While
interpersonal therapy and systemic family therapy show
promise, they have not been studied sufficiently to
evaluate their effectiveness by these standards.
However, in acomprehensive review article (Kaslow &
Thompson, 1998) that evaluated interventions for
depression in children and adolescents against the
American Psychological Association Task Force
criteria, two forms of cognitive-behavioral therapy
(CBT) were found to be "probably effective
treatments," although none of the interventions for
depression were deemed, as yet, to meet the
Association's higher standard for a well-established
intervention.

155


Mental Health: A Report of the Surgeon General

In studies that focused on relieving symptoms of
depression in preadolescents, only one form of CBT
met the criteria for a probably e&ctive intervention. In
the first study, the relative efficacy of two types of
CBT-12-session group interventions based on either
self-control therapy or behavior-solving therapy-were
compared with a "waiting list" control group (Stark et
al., 1987). Children responded to both CBT inter-
ventions with fewer symptoms of depression and
anxiety, whereas the waiting list group exhibited
minimal change. Because improvement was greatest
with self-control therapy, this intervention was
compared in a later study with a traditional counseling
condition. Self-control therapy, enhanced by doubling
the number of sessions, entailed social skills training,
assertiveness training, relaxation training and imagery,
and cognitive restructuring. Monthly family meetings
were also added to both the experimental and control
conditions. Children receiving self-control therapy
reported fewer symptoms at 7-month followup (Stark
et al., 1991).

Among the numerous studies of adolescents
reviewed by Kaslow and Thomson (1998), one form of
CBT-coping skills-was judged probably e$jT-
cacious. This intervention, based on the "Coping with
Depression" course, was developed originally in
Oregon for adults by Lewinsohn and colleagues
(Lewinsohn et al., 1996) and adapted by Clarke and
colleagues (1992) for school-based programs to treat
adolescent depression. Compared with controls on the
waiting list, adolescents who received CBT had lower
rates of depression, less self-reported depression,
improvement in cognitions, and increased activity
levels (Lewinsohn et al., 1990, 1996). To achieve well-
estubEished status, as defined by the American Psycho-
logical Association Task Force, the intervention has to
be studied by another team of investigators-which has
not as yet been done.

Pharmacologica/ Treatment

Prior to 1996, the medications of choice for major
depression in children and adolescents were the
tricyclic antidepressants, a choice based on numerous
studies in adults. However, 13 distinct trials in children
and adolescents failed to demonstrate the efficacy of
tricyclic antidepressants for younger ages. Tricyclic
antidepressants also have a higher risk of toxicity than
selective serotonin reuptake inhibitors (SSRIs) (Walsh
et al., 1994; Kutcher, 1998). The current consensus is
that tricyclic medications are not the medication of
choice for depressed children and adolescents
(Eisenberg, 1996; Fisher & Fisher, 1996).
Recent research indicates that young people with
depressive disorders may respond more favorably to
SSRIs than to tricyclic antidepressants. The first SSRI
tested in children and adolescents was fluoxetine. In a
study of 96 outpatients over 8 weeks, 56 percent
receiving fluoxetine and 33 percent receiving placebo
were "much" or "very much" improved on the Clinical
Global Improvement Scale. Benefits were comparable
across age groups. Complete symptom remission
occurred for 31 percent of fluoxetine-treated patients
compared with 23 percent of placebo-treated patients
(Emslie et al., 1997). A recent open trial of fluoxetine
for adolescents hospitalized for treatment of major
depression found it to decrease depression scores more
effectively than imipramine, a tricyclic antidepressant
(Strober et al., 1999), with the further advantage that
fluoxetine was well tolerated.

The safety of a second SSRI, paroxetine, was
demonstrated in a multicenter double-blind placebo-
controlled trial. Paroxetine was compared with
imipramine and placebo in 275 adolescents who met
the DSM-IV criteria for major depression. Preliminary
results indicate that, mostly because of side effects,
one-third of imipramine patients withdrew from the
study, a proportion significantly higher than that for
paroxetine (10 percent) and placebo (7 percent)
(Wagner et al., 1998). One of the co-investigators of
this study noted that paroxetine's efficacy was superior

156


to that of imipramine and placebo on the Clinical
Global Improvement Scale (Graham Emslie, personal
communication, October 1998). However, final
conclusions about the benefit of this second SSRI must
await publication of the outcomes of this multicenter
study.

In summary, psychosocial interventions for
depressed children and adolescents indicate great
promise, with several types of cognitive-behavioral
therapy for the child or adolescent leading the way.
With respect to pharmacotherapy, new studies attest to
the safety and efficacy of two SSRIs. These promising
findings are being extended in the recently begun
NIMH-funded Treatment of Adolescents with
Depression study.

Bipolar Disorder

Pharmacological Treatment

The treatment of bipolar disorder entails treating
symptoms of both depression and mania. For decades,
lithium has been the well-researched mainstay
treatment for maniain adults. Mania in bipolar disorder
of children is also treated with lithium, although the
relevant research on children lags behind that on adults.
Only in recent years have researchers begun to study
lithium in children and adolescents, with good clinical
response. Open trials of lithium were conducted in the
late 1980s (Varanka et al., 1988; Strober et al., 1990).
More recently, lithium proved to be more effective than
placebo in treating adolescents who were bipolar and
substance dependent (Geller et al., 1998).
Children experience the same safety problems with
lithium as do adults: toxicity and impairment of renal
and thyroid functioning (Geller & Luby, 1997).
Lithium is therefore not recommended for families
unable to keep regular appointments that would ensure
monitoring of serum lithium levels and of adverse
events. Patients who discontinue taking the drug have
a high relapse rate (Strober et al., 1990).
  As yet, there are no controlled studies on a number
of other psychotropic agents also used clinically in
children and adolescents with bipolar disorder,

Children and Mental Health

including valproate, carbamazepine, methylphenidate,
and low-dose chlorpromazine (Campbell & Cueva,
1995; Geller & Luby, 1997).

Suicide

Psychotherapeutic Treatments

Suicidal children and adolescents report feelings of
intense emotional distress involving depression, anger,
anxiety, hopelessness,  and worthlessness and an
inability to change problematic, frustrating
circumstances or to find a solution to their problems
(Kienhorst et al., 1995; Ohring et al., 1996). They feel
so distraught that they often respond impulsively to
their despair. Psychotherapeutic techniques aim to
decrease such intolerable feelings and thoughts and to
re-orient the cognitive and emotional perspectives of
the suicidal child or adolescent (Kemberg, 1994;
Spirito, 1997).

Cognitive-behavioral therapy (CBT) may be a
useful intervention, considering that suicidal children
and adolescents often experience negative cognitions
about themselves, their environment, and their futures.
Recent research suggests that CBT may be more
effective than systemic behavior family therapy or
individual nondirective supportive therapy in reducing
depressive symptoms associated with suicidal ideation
(Brent et al., 1997). Such treatment can focus on re-
attribution of precipitating issues for suicidal behavior
and enable the suicidal child or adolescent to rank
stresses and to consider avenues of problem-solving
(Rotheram-Borus et al., 1994; Brent et al., 1997;
Spirito, 1997).

Interpersonal conflicts are important stresses
related to the risk imparted by poor social adjustment
of potentially suicidal children and adolescents.
Treatment of interpersonal strife may significantly
reduce suicidal risk. Recent research into the efficacy
of interpersonal psychotherapy of depressed
adolescents suggests beneficial effects (Kaslow &
Thompson, 1998); it is a treatment that may be
modified to address the risk factor issues related to
interpersonal loss, conflicts, and need for restitution


Mental Health: A Report of the Surgeon General

often reported by children and adolescents with suicidal
tendencies.

A significant class of risk factors for suicide
involves family discord, which is characterized by poor
communication, disagreements, and lack of cohesive
values and goals and of common activities (de Long,
1992; Miller et al., 1992; Wagner, 1997). Suicidal
children and adolescents often feel that they are
isolated within the family, exhibit problems in
independence, and view themselves as expendable to
the family, a perception that is a motivating force for
self-annihilation (Sabbath, 1969; Pfeffer, 1986; Miller
et al., 1992). Family intervention with suicidal children
and adolescents is an important method to decrease
such problems and to enhance effective family
problem-solving and conflict resolution, so that blame
is not directed toward the suicidal child or adolescent.
Cognitive-behavioral approaches with suicidal children
and adolescents and their families aim to reframe their
understanding of family problems, alter the family style
of maladaptive problem-solving techniques, and
encourage positive family interactions (Rotheram-
Borus et al.,  1994). Time-limited home-based
intervention to reduce suicidal ideation in children and
adolescents and to improve family functioning has been
reported to have limited efficacy for children and
adolescents without major depressive disorder
(Harrington et al., 1998). Psychoeducational approach-
es to reduce the extent of expressed anger may be
helpful in lowering risk for suicidal behavior in
children and adolescents (Fristad et al., 1996).

Psychopharmacologica/ Treatments

There is a dearth of research on the efficacy of
pharmacological treatments for reducing suicidal
thoughts or preventing suicide in children and
adolescents. Most of the research on pharmacotherapies
has been conducted in adults. In depressed adults,
SSRIs have been found to reduce suicidal ideation
(Letizia et al., 1996; Wemicke et al., 1997) and to
reduce the frequency of suicide attempts in
.nondepressed patients who had previously made at least
one suicide attempt (Verkes et al., 1998). In a

controlled trial of the experimental neuroleptic drug
flupenthixol, researchers noted a significant reduction
in suicide-attempt behavior in adults who had made
numerous previous attempts (Montgomery &
Montgomery, 1982). Similar studies have yet to be
conducted on adolescents, although trials of SSRIs in
depressed adolescents suggest that these drugs are
effective for treating depression and for reducing
suicidal ideas also in this age group (Emslie et al.,
1997; Ryan & Varma, 1998). Because placebo-
controlled, methodologically appropriate studies of
tricyclic antidepressants have failed'tofmd a significant
effect in depressed children and adolescents (Ryan &
Varma, 1998), it is reasonable to regard SSRIs as a
first-choice medication in treating depressed suicidal
children and adolescents (also see American Academy
of Child and Adolescent Psychiatry, 1998). In contrast
to tricyclic antidepressants, SSRIs have low lethal
potential when taken in overdoses (Ryan & Varma,
1998).

In adults with major depressive disorder, controlled
research suggests that lithium reduces suicide risk
(Thies-Flechtner et al., 1996), but this has not yet been
demonstrated in children and adolescents. Clinicians
should be cautious about prescribing medications that
may reduce self-control, such as the benzodiazapines,
amphetamines, and phenobarbital. These drugs also
have a high lethal potential if taken in overdose
(Carlsten et al., 1996).

158

Intervention After a Suicidal Death of a Relative,
Friend, or Acquaintance
The suicidal death of a relative or acquaintance may
increase the risk for childhood or adolescent suicidal
behavior and other dysphoric states (Brent et al., 1992,
1994; Pfeffer et al., 1994, 1997; Clark & Goebel,
1996). Major depression, post-traumatic stress disorder,
and suicidal ideation often occur after the death of an
adolescent friend or acquaintance and relative (Brent et
al., 1992, 1994, 1996).

The goal of the clinician is to decrease the
likelihood that a child or adolescent comes to view the
suicidal behavior of the deceased as a coping strategy
in dealing with adversity (Brent et al., 1997). Psycho-


educational counseling may reduce the risk for suicidal
behavior in these circumstances. Intervention is also
needed to decrease the child's or teen's personal sense
of guilt, trauma, and social isolation. This treatment can
be given in individual meetings, at group sessions with
other teens, or in conjunction with parents who need
help to support the adaptive capacities of their children
and adolescents. School professionals sometimes offer
programs of this kind and can be invaluable in
identifying grieving friends who may need help.

Community-Based Suicide Prevention
The principal public health approaches to suicide
prevention have been (1) crisis hotlines*; (2) restric-
tions covering access to suicide methods; (3) media
counseling to minimize imitative suicide; (4) indirect
case-finding by educating potential gate-keepers,
teachers, parents, and peers to identify the warning
signs of an impending suicide; (5) direct case-finding
among high school or college students or among the
patients of primary practitioners by screening for
conditions that place teens at risk for suicide; and (6)
training professionals to improve recognition and
treatment of mood disorders. As discussed below, the
level of evidence for these strategies varies. There is
more support for direct case-finding and improved
recognition and treatment of mood disorders than for
the other strategies.

Crisis Hotlines

Although crisis hotlines are available almost every-
where in the United States, research has failed to show
that they reduce the incidence of suicide (Bleach &
Clairbom, 1974; Apsler & Hodas, 1976; Miller et al.,
1984; Shaffer et al., 1990a, 199Ob). Possible reasons
for this are that actively suicidal individuals (males and
individuals with an acute mental disturbance) do not
call hotlines because they are acutely disturbed,
preoccupied, or intent on not being deflected from their
intended course of action (Shaffer et al., 1989).
Hotlines are often busy, and there may be a long wait

* Crisis hotlines are only one of the services offered through crisis
services, a topic discussed subsequently.

Children and Mental Health

before a call is answered, so that callers disconnect; the
advice individuals get on calling a hotline may be
stereotyped, inappropriate for an individual's needs,
and perceived as unhelpful by the caller. Gender
preferences in seeking help result in the large majority
of callers being females, whereas males are at greatest
risk for suicide. While each of these deficiencies is
potentially modifiable, there have been no systematic
attempts to do so.

Method Restriction

Method preference for suicide varies by gender and by
nationality. In the United States, the most common
method for committing suicide is by firearms, and it has
been suggested that reducing firearms availability will
reduce the incidence of suicide (Moscicki, 1995).
However, a natural experiment in Great Britain
suggests this is unlikely. The favored suicide method,
self-asphyxiation with coal gas, became impossible
after the introduction of natural gas. This resulted in a
marked but short-lived decline in the suicide rate.
Within a decade, the suicide rate had returned to
previous levels, and suicides were being committed by
other means (Farberow, 1985). Although reducing
access to firearms with gun-security laws reduces
accidental deaths from firearms (Cummings et al.,
1997), there is no evidence to date that such laws have
a significant impact on suicides attributable to firearms.

Media Counseling

Even though it appears prudent for reporters and editors
to minimize coverage of youth suicide in general and
attention to individual suicides (O'Carroll & Potter,
1994), there is as yet no evidence that these guidelines,
issued by the Centers for Disease Control and
Prevention, are effective in reducing the suicide rate.

Indirect Case-finding Through Education
Controlled studies have failed to show that classes for
high school students about suicide increase students'
help-seeking behavior when they are troubled or
depressed (Spirit0 et al., 1988; Shaffer et al., 1991;
Vieland et al., 1991). On the other hand, there is
evidence that previously suicidal adolescents are upset

159


Mental Health: A Report of the Surgeon General

by exposure to such classes (Shaffer et al., 1990a,
1990b), even though this does not necessarily lead to a
suicide attempt. Such educational programs seem,
therefore, to be both an ineffective mode of case-
finding and to carry with them an unjustified risk of
activating suicidal thoughts.

Direct Case-Finding

Judging from the high response rate to surveys about
suicidal attempts and ideation (National Center for
Health Statistics, 1997), adolescents will provide
accurate information about their own suicidal thoughts
and/or behaviors if asked directly in a nonthreatening
way. A sensible approach to suicide prevention that
needs further study, therefore, is to screen
systematically 15 to 19-year-olds (the age group at
greatest risk) for (1) previous suicide attempts;
(2) recent, serious, suicidal preoccupations; (3) depres-
sion; or (4) complications of substance or alcohol use.
Clearly, screening programs need to go beyond
identifying a teen with a high-risk profile. Youth
identified in this way should be referred for evaluation
and, if necessary, treatment. Contingency arrangements
may need to be made to assist uninsured adolescents
with help if it is needed (Shaffer & Craft, 1999).

Aggressive Treatment of Mood Disorders
Preliminary and as yet unreplicated studies in Sweden
(Rihmer et al., 1995) suggest that education of primary
medical practitioners  to better identify the
characteristics of mood disorders and to treat these
effectively produced a significant reduction in suicide
and suicide-attempt rates. Although the optimal
treatment of adolescent depression is not yet as well
understood as that of adult depression, this is an option
that may prove to be useful.

Air force Suicide Prevention Program-A
Community Approach
Combining many of the approaches for adolescents
described above, the Air Force Surgeon General
developed and implemented a community approach to
suicide prevention for older adolescents and young
adults on active duty. The program involved education

on suicide risk awareness, reducing barriers to mental
health services, and stigma-reducing efforts.'

Other Mental Disorders in Children
and Adolescents

Anxiety Disorders
The combined prevalence of the group of disorders
known as anxiety disorders is higher than that of
virtually all other mental disorders of childhood and
adolescence (Costello et al., l,996). The l-year
prevalence in children ages 9 to 17 is.13 percent (Table
3-l). This section furnishes brief overviews of several
anxiety disorders: separation anxiety disorder,
generalized anxiety disorder, social phobia, and
obsessive-compulsive disorder. Treatments for all but
the latter are grouped together below.

Separation Anxiety Disorder

Although separation anxieties are normal among
infants and toddlers, they are not appropriate for older
children or adolescents and may represent symptoms of
separation anxiety disorder. To reach the diagnostic
threshold for this disorder, the anxiety or fear must
cause distress or affect social, academic, or job
functioning and must last at least 1 month (DSM-IV).
Children with separation anxiety may cling to their
parent and have difficulty falling asleep by themselves
at night. When separated, they may fear that their
parent will be involved in an accident or taken ill, or in
some other way be "lost" to the child forever. Their
need to stay close to their parent or home may make it
difficult for them to attend school or camp, stay at
friends' houses, or be in a room by themselves. Fear of
separation can lead to dizziness, nausea, or palpitations
(DSM-IV).

Separation anxiety is often associated with
symptoms of depression, such as sadness, withdrawal,
apathy, or difficulty in concentrating, and such children
often fear that they or a family member might die.

' In 1995, prior to implementation, suicide rates were almost 16 per
100,000; following 3 years of exposure to the program, suicide rates
fell to below 2 per 100,000 (Air Force Surgeon General, personal
communication, 1999)

160


Young children experience nightmares or fears at
bedtime.

About 4 percent of children and young adolescents
suffer from separation anxiety disorder (DSM-IV).
Among those who seek treatment, separation anxiety
disorder is equally distributed between boys and girls.
In survey samples, the disorder is more common in
girls (DSM-IV). The disorder may be over-diagnosed in
children and teenagers who live in dangerous
neighborhoods and have reasonable fears of leaving
home.

The remission rate with separation anxiety disorder
is high. However, there are periods where the illness is
more severe and other times when it remits. Sometimes
the condition lasts many years or is a precursor to panic
disorder with agoraphobia. Older individuals with
separation anxiety disorder may have difficulty moving
or getting married and may,. in turn, worry about
separation from their own children and partner.
The cause of separation anxiety disorder is not
known, although some risk factors have been identified.
Affected children tend to come from families that are
very close-knit. The disorder might develop after a
stress such as death or illness in the family or a move.
Trauma, especially physical or sexual assault, might
bring on the disorder (Goenjian et al.,' 1995). The
disorder sometimes runs in families, but the precise
role of genetic and environmental factors has not been
established. The etiology of anxiety disorders is more
thoroughly discussed in Chapter 4.

Generalized Anxiety Disorder

Children with generalized anxiety disorder (or
overanxious disorder of childhood) worry excessively
about all manner of upcoming events and occurrences.
They worry unduly about their academic performance
or sporting activities, about being on time, or even
about natural disasters such as earthquakes. The worry
persists even when the child is not being judged and
has always performed well in the past. Because of their
anxiety,  children may be overly conforming,
perfectionist, or unsure of themselves. They tend to
redo tasks if there are any imperfections. They tend to
seek approval and need constant reassurance about

Children and Mental Health

their performance and their anxieties (DSM-IV). The l-
year prevalence rate for all generalized anxiety disorder
sufferers of all ages is approximately 3 percent. The
lifetime prevalence rate is about 5 percent (DSM-IV).
About half of all adults seeking treatment for this
disorder report that it began in childhood or
adolescence, but the proportion of children with this
disorder who retain the problem into adulthood is
unknown. The remission rate is not thought to be as
high as that of separation anxiety disorder.

Social Phobia

Children with social phobia (&so called social anxiety
disorder) have a persistent fear of being embarrassed in
social situations, during a performance, or if they have
to speak in class or in public, get into conversation with
others, or eat, drink, or write in public. Feelings of
anxiety in these situations produce physical reactions:
palpitations, tremors, sweating, diarrhea, blushing,
muscle tension, etc. Sometimes a full-blown panic
attack ensues; sometimes the reaction is much more
mild. Adolescents and adults are able to recognize that
their fear is unreasonable or excessive, although this
recognition does not prevent the fear, Children,
however, might not recognize that their reaction is
excessive, although they may be afraid that others will
notice their anxiety and consider them odd or babyish.
Young children do not articulate their fears, but
may cry, have tantrums, freeze, cling, appear extremely
timid in strange social settings, shrink from contact
with others, stay on the side during social events, and
try to stay close to familiar adults. They may fall
behind in school, avoid school completely, or avoid
social activities among children their age. The
avoidance of the fearful situations or worry preceding
the feared event may last for weeks and interfere with
the individual's daily routine, social life, job, or school.
They may find it impossible to speak in social
situations or in the presence of unfamiliar people (for
review of social phobia, see DSM-IV; Black et al.,
1997).

Social phobia is common, the lifetime prevalence
ranging from 3 to 13 percent, depending on how great
the fear is and on how many different situations induce

161


Mental Health: A Report of the Surgeon General

the anxiety (DSM-IV; Black et al., 1997). In survey
studies, the majority of those with the disorder were
found to be female (DSM-IV). Often the illness is
lifelong, although it may become less severe or
completely remit. Life events may reassure the
individual or exacerbate the anxiety and disorder.

Treatment of Anxiety

Although anxiety disorders are the most common
disorder of youth, there is relatively little research on
the efficacy of psychotherapy (Kendall et al., 1997).
For childhood phobias, contingency management" was
the only intervention deemed to be well-established,
according to an evaluation by Ollendick and King
(1998), which applied ,the American Psychological
Association Task Force criteria (noted earlier). Several
psychotherapies are probably ejkacious for treating
phobias: systematic desensitization"; modeling, based
on research by Bandura and colleagues, which
capitalizes on an observational learning technique
(Bandura, 197 1; see also Chapter 2); and several cogni-
tive-behavioral therapy (CBT) approaches (Ollendick
& King, 1998).

CBT, as pioneered by Kendall and colleagues
(Kendall et al., 1992; Kendall, 1994), is deemed by the
American Psychological Association Task Foice as
probably efJicacious. It has four major components:
recognizing anxious feelings, clarifying cognitions in
anxiety-provoking situations,12 developing a plan for
coping, and evaluating the success of coping strategies.
A more recent study in Australia added a parent
component to CRT, which enhanced reduction in post-
treatment anxiety disorder significantly compared with
CBT alone (Barrett et al., 1996). However, none of the
interventions identified above as well-established or
probably eflcacious has, for the most part, been tested
in real-world settings.

lo Contingency management attempts to alter behavior by
manipulating its consequences through the behavioral principles of
shaping, positive reinforcement, and extinction.
I' A technique that trains people to "unlearn" fears by presentation
of fearful stimuli along with nonfearful stimuli.
I2 This refers to understanding how cognitions are being distorted.

162

In addition, psychodynamic treatment to address
underlying fears and worries can be helpful, and
behavior therapy may reduce the child's fear of
separation or of going to school; however, the
experimental support for these approaches is limited.

Preliminary research suggests that selective
serotonin reuptake inhibitors may provide effective
treatment of separation anxiety disorder and other
anxiety disorders of childhood and adolescence. Two
large-scale randomized controlled trials are currently
being undertaken (Greenhill, 1998a, 1998b). Neither
tricyclic antidepressants norbenzodiazepines have been
shown to be more effective than placebo in children
(Klein et al., 1992; Bernstein et al., 1998).

Obsessive-Compulsive Disorder

Obsessive-compulsive disorder (OCD), which is
classified in DSM-IV as an anxiety disorder, is
characterized by recurrent, time-consuming obsessive
or compulsive behaviors that cause distress and/or
impairment. The obsessions may be repetitive intrusive
images, thoughts, or impulses. Often the compulsive
behaviors, such as hand-washing or cleaning rituals, are
an attempt to displace the obsessive thoughts
(DSM-IV). Estimates of prevalence range from 0.2 to
0.8 percent in children, and up to 2% of adolescents
(Flament et al., 1998).

There is a strong familial component to OCD, and
there is evidence from twin studies of both genetic
susceptibility and environmental influences. If one twin
has OCD, the other twin is more likely to have OCD if
the children are identical twins rather than fraternal
twin pairs. OCD is increased among first-degree
relatives of children with OCD, particularly among
fathers (Lenane et al., 1990). It does not appear that the
child is simply imitating the relative's behavior,
because children who develop OCD tend to have
symptoms different from those of relatives with the
disease (Leonard et al., 1997). Many adults with either
childhood- or adolescent-onset of OCD show evidence
of abnormalities in a neural network known as the
orbitofrontal-striatal area (Rauch & Savage, 1997;
Grachev et al., 1998).


Recent research suggests that some children with
oCD develop the condition after experiencing one type
of streptococcal infection (Swedo et al., 1995). This
condition is referred to by the acronym PANDAS,
which stands for Pediatric Autoimmune Neuro-
psychiatric Disorders Associated with Streptococcal
infections. Its hallmark is a sudden and abrupt
exacerbation of OCD symptoms after a strep infection.
This form of OCD occurs when the immune system
generates antibodies to the'streptococcal bacteria, and
the antibodies cross-react with the basal ganglia13 of a
susceptible child, provoking OCD (Garvey et al.,
1998). In other words, the cause of this form of OCD
appears to be antibodies directed against the infection
mistakenly attacking a region of the brain and setting
off an inflammatory reaction.

The selective serotonin reuptake inhibitors appear
effective in ameliorating the symptoms of OCD in
children, although more clinical trials have been done
with adults than with children. Several randomized,
controlled trials revealed SSRIs to be effective in
treating children and adolescents with OCD @lament
et al., 1985; DeVeaugh-Geiss et al., 1992; Riddle et al.,
1992, 1998). The appropriate duration of treatment is
still being studied. Side effects are not inconsequential:
dry mouth, somnolence, dizziness, fatigue, tremors, and
constipation occur .at fairly high rates. Cognitive-
behavioral treatments also have been used to treat OCD
(March et al., 1997), but the evidence is not yet
conclusive.

Autism

Autism, the most common of the pervasive develop-
mental disorders (with a prevalence of 10 to 12
children per 10,000 [Bryson & Smith, 1998]), is
characterized by severely compromised ability to
engage in, and by a lack of interest in, social
interactions. It has roots in both structural brain
abnormalities and genetic predispositions, according to
family studies and studies of brain anatomy. The search
for genes that predispose to autism is considered an

I3 Basal ganglia are groups of neurons responsible for motor and
impulse control, attention, and regulation of mood and behavior.

Children and Mental Health

extremely high research priority for the National
Institute of Mental Health (NIMH, 1,998). Although the
reported association between autism and obstetrical
hazard may be due to genetic factors (Bailey et al.,
1995), there is evidence that several different causes of
toxic or infectious damage to the central nervous
system during early development also may contribute
to autism. Autism has been reported in children with
fetal' alcohol syndrome (Aronson et al., 1997), in
children who were infected with rubella during
pregnancy (Chess et al., 1978), and in children whose
mothers took a variety of medications that are known to
damage the fetus (Williams &Hersh, 1997).
Cognitive deficits in social perception likely result
from abnormalities in neural circuitry. Children with
autism have been studied with several imaging
techniques, but no strongly consistent findings have
emerged, although abnormalities in the cerebellum and
limbic system (Rapin & Katzman, 1998) and larger
brains (Piven, 1997) have been reported. In one small
study (Zilbovicius et al., 1995), evidence of delayed
maturation of the frontal cortex was found. The
evidence for genetic influences include a much greater
concordance in identical than in fraternal twins (Cook,
1998).

Treatment

Because autism is a severe, chronic developmental
disorder, which results in significant lifelong disability,
the goal of treatment is to promote the child's social
and language development and minimize behaviors that
interfere with the child's functioning and learning.
Intensive, sustained special education programs and
behavior therapy early in life can increase the ability of
the child with autism to acquire language and ability to
learn. Special education programs in highly structured
environments appear to help the child acquire self-care,
social, and job skills. Only in the past decade have
studies shown positive outcomes for very young
children with autism. Given the severity of the
impairment, high intensity of service needs, and costs
(both human and financial), there has been an ongoing
search for effective treatment.

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Mental Health: A Report of the Surgeon General

Thirty years of research demonstrated the efficacy
of applied behavioral methods in reducing inap-
propriate behavior and in increasing communication,
learning, and appropriate social behavior. A well-
designed study of a psychosocial intervention was
carried out by Lovaas and colleagues (Lovaas, 1987;
McEachin et al., 1993). Nineteen children with autism
were treated intensively with behavior therapy for 2
years and compared with two control groups. Followup
of the experimental group in first grade, in late
childhood, and in adolescence found that nearly half
the experimental group but almost none of the children
in the matched control group were able to participate in
regular schooling. Up to this point, a number of other
research groups have, provided at least a partial
replication of the Lovaas model (see Rogers, 1998).   .

Several uncontrolled studies of comprehensive
center-based programs have been conducted, focusing
on language development and other developmental
skills. A comprehensive model, Treatment and
Education of Autistic and Related Communication
Handicapped Children (TEACCH), demonstrated short-
term gains for preschoolers with autism who received
daily TEACCH home-teaching sessions, compared with
a matched control group (Ozonoff & Cathcart, 1998).
A review of other comprehensive, center-based
programs has been conducted, focusing on elements
considered critical to school-based programs, including
minimum hours of service and necessary curricular
components (Dawson & Osterling, 1997).
  The antipsychotic drug, haloperidol, has been
shown to be superior to placebo in the treatment of
autism (Perry et al., 1989; Locascio et al., 1991),
although a significant number of children develop
dyskinesias14 as a side effect (Campbell et al., 1997).
Two of the SSRIs, clomipramine (Gordon et al., 1993)
and fluoxetine (McDougle et al., 1996), have been
tested, with positive results, except in young autistic
children, in whom clomipramine was not found to be
therapeutic, and who experienced untoward side effects
(Sanchez et al., 1996). Of note, preliminar- studies of

I4 Dyskinesia is an impairment of voluntary movement, such that it
becomes fragmentary or incomplete.

some of the newer antipsychotic drugs suggest that they
may have fewer side effects than conventional
antipsychotics such as haloperidol, but controlled
studies are needed before fm conclusions can be
drawn about any possible advantages in safety and
efficacy over traditional agents.

Disruptive Disorders
Disruptive disorders, such as oppositional defiant
disorder and conduct disorder, are characterized by
antisocial behavior and, as such, seem to be a collection
of behaviors rather than a coherent pattern of mental
dysfunction. These behaviors are dso frequently found
in children who suffer from attention-deficitiyper-
activity disorder, another disruptive disorder, which is
discussed separately in this chapter. Children who
develop the more serious conduct disorders often show
signs of these disorders at an earlier age. Although it is
common for a very young children to snatch something
they want from another child, this kind of behavior may
herald a more generally aggressive behavior and be the
first sign of an emerging oppositional defiant or
conduct disorder if it occurs by the ages of 4 or 5 and
later. However, not every oppositional defiant child
develops conduct disorder, and the difficult behaviors
associated with these conditions often remit.
  Oppositional defiant disorder (ODD) is diagnosed
when a child displays a persistent or consistent pattern
of defiance, disobedience, and hostility toward various
authority figures including parents, teachers, and other
adults. ODD is characterized by such problem
behaviors as persistent fighting and arguing, being
touchy or easily annoyed, and deliberately annoying or
being spiteful or vindictive to other people. Children
with ODD may repeatedly lose their temper, argue with
adults, deliberately refuse to comply with requests or
rules of adults, blame others for their own mistakes,
and be repeatedly angry and resentful. Stubbornness
and testing of limits are common. These behaviors
cause significant difficulties with family and friends
and at school or work (DSM-IV; Weiner, 1997).
Oppositional defiant disorder is sometimes a precursor
of conduct disorder (DSM-IV).

164


In different studies, estimates of the prevalence of
ODD have ranged from 1 to 6 percent, depending on
the population sample and the way the disorder was
evaluated, but not depending on diagnostic criteria.
Rates are lower when impairment criteria are more
strict and when information is obtained from teachers
and parents rather than from the children alone (Shaffer
et al., 1996a). Before puberty, the condition is more
common in boys, but after puberty the rates in both
genders are equal.

In preschool boys, high reactivity, difficulty being
soothed, and high motor activity may indicate risk for
the disorder. Marital discord, disrupted child care with
a succession of different caregivers, and inconsistent,
unsupervised child-rearing may contribute to the
condition.

  Children or adolescents with conduct disorder
behave aggressively by fighting, bullying, intimidating,
physically assaulting, sexually coercing, and/or being
cruel to people or animals. Vandalism with deliberate
destruction of property, for example, setting fires or
smashing windows, is common, as are theft; truancy;
early tobacco, alcohol, and substance use and abuse;
and precocious sexual activity. Girls with a conduct
disorder are prone to running away from home and may
become involved in prostitution. The behavior
interferes with performance at school or work, so that
individuals with this disorder rarely perform at the level
predicted by their IQ or age. Their relationships with
peers and adults are often poor. They have higher
injury rates and are prone to school expulsion and
problems with the law. Sexually transmitted diseases
are common. If they have been removed from home,
they may have difficulty staying in an adoptive or
foster family or group home, and this may further
complicate their development. Rates of depression,
suicidal thoughts, suicide attempts, and suicide itself
are all higher in children diagnosed with a conduct
disorder (Shaffer et al., 1996b).

The prevalence of conduct disorder in 9- to 17-
year-olds in the community varies from 1 to 4 percent,
depending on how the disorder is defined (Shaffer et
al., 1996a). Children with an early onset of the
disorder, i.e., onset before age 10, are predominantly

Children and Mental Health

male. The disorder appears to be more common in
cities than in rural areas (DSM-IV). Those with early
onset have a worse prognosis and are at higher risk for
adult antisocial personality disorder (DSM-IV; Rutter
& Giller, 1984; Hendren & Mullen, 1997). Between a
quarter and a half of highly antisocial children become
antisocial adults.

The etiology of conduct disorder is not fully
known. Studies of twins and adopted children suggest
that conduct disorder has both biological (including
genetic) and psychosocial components (Hendren &
Mullen, 1997). Social risk factors for conduct disorder
include early maternal rejeztion, separation from
parents with no adequate alternative caregiver
available, early institutionalization, family neglect,
abuse or violence, parents' psychiatric illness, parental
marital discord, large family size, crowding, and
poverty (Loeber & Stouthamer-Loeber, 1986). These
factors are thought to lead to a lack of attachment to the
parents or to the family unit and eventually to lack of
regard for the rules and rewards of society (Sampson &
Laub, 1993). Physical risk factors for conduct disorder
include neurological damage caused by birth
complications  or low birthweight, attention-
deficit/hyperactivity disorder, fearlessness and stim-
ulation-seeking behavior, learning impairments,
autonomic underarousal, and insensitivity to physical
pain and punishment. A child with both social
deprivation and any of these neurological conditions is
most susceptible to conduct disorder (Raine et al.,
1998).

Since many of the risk factors for conduct disorder
emerge in the first years of life, intervention must begin
very early. Recently, screening instruments have been
developed to enable earlier identification of risk factors
and signs of conduct disorder in young children (Feil et
al., 1995). Studies have shown a correlation between
the behavior and attributes of 3-year-olds and the
aggressive behavior of these children at ages 11 to 13
(Raine et al., 1998). Measurements of aggressive
behaviors have been shown to be stable over time
(Sampson & Laub, 1993). Training parents of high-risk
children how to deal with the children's demands may
help. Parents may need to be taught to reinforce

165


Mental Health: A Report of the Surgeon General

appropriate behaviors and not harshly punish
transgressing ones, and encouraged to find ways to
increase the strength of the emotional ties between
parent and child. Working with high-risk children on
social interaction and providing academic help to
reduce rates of school failure can help prevent some of
the negative educational consequences of conduct
disorder (Johnson & Breckenridge, 1982).

Treatment

Several psychosocial interventions can effectively
reduce antisocial behavior in disruptive disorders. A
recent review of psychosocial treatments for children
and adolescents identified 82 studies conducted
between 1966 and 1995 involving 5,272 youth (Brestan
& Eyberg, 1998). The criterion for inclusion was that
the child was in treatment for conduct problem
behavior, based on displaying a symptom of conduct
disorder or oppositional defiant disorder, rather than on
a DSM diagnosis of either, although children did meet
DSM criteria for one of these conditions in about one-
third of the studies.

By applying criteria established by the American
Psychological Association Task Force (see earlier) to
the 82 studies, two treatments met criteria for well-
established treatment and 10 for probably efJicacious
treatment. Two well-established treatments, both di-
rected at training parents, succeeded in reducing
problem behaviors. The two treatments were a parent
training program based on the manual Living With
ChiEdren (Bemal et al., 1980) and a videotape modeling
parent training (Spaccarelli et al., 1992). The first
teaches parents to reward desirable behaviors and
ignore or punish deviant behaviors, based on principles
of operant conditioning. The second provides a series
of videotapes covering parent-training lessons, after
which a therapist leads a group discussion of the
videotape lessons. The identification of 12 treatments
as well-established or probably eficacious is very
encouraging because of the potential to intervene
effectively with youth at high risk of poor outcomes. A
new and promising approach for the treatment of
conduct disorder is multisystemic therapy, an intensive

home- and family-focused treatment that is described
under Home-Based Services.

Despite strong enthusiasm for improving care for
conduct-disordered youth, there are important groups of
children, specifically girls and ethnic minority
populations, who were not sufficiently represented in
these' studies to ensure that the identified treatments
work for them. Other issues raised by Brestan and
Eyberg (1998) are cost-effectiveness, the sufficiency of
a given intervention, effectiveness over time, and the
prevention of relapse.

No drugs have been demonstrated to be
consistently effective in treating *conduct disorder,
although four drugs have been tested. Lithium and
methylphenidate have been found (one double-blind
placebo trial each) to reduce aggressiveness effectively
in children with conduct disorder (Campbell et al.,
1995; Klein et al., 1997b), but in two subsequent
studies with the same design, the positive findings for
lithium could not be reproduced (Rifkin et al., 1989;
Klein, 1991). In one of the latter studies, methyl-
phenidate was superior to lithium and placebo. A third
drug, carbamazepine, was found in a pilot study to be
effective, but multiple side effects were also reported
(Kafantaris et al., 1992). The fourth drug, clonidine,
was explored in an open trial, in which 15 of 17
patients showed a significant decrease in aggressive
behavior, but there were also significant side effects
that would require monitoring of cardiovascular and
blood pressure parameters (Kemph et al., 1993).

Substance Use Disorders in Adolescents
Since the early 1990s there has been a "sharp
resurgence" in the misuse of alcohol and other drugs by
adolescents (Johnston et al., 1996). A recent review,
focusing particularly on substance abuse and
dependence, synthesizes research findings of the past
decade (Weinberg et al., 1998). The authors review
epidemiology, course, etiology, treatment, and
prevention and discuss comorbidity with other mental
disorders in adolescents. All of these issues are
important to public health, but none is more relevant to
this report than the co-occurrence of alcohol and other

166


substance use disorders with other mental disorders in
adolescents.

According to the National Comorbidity Study, 41
to 65 percent of individuals with a lifetime substance
abuse disorder also have a lifetime history of at least
one mental disorder, and about 5 1 percent of those with
one or more lifetime mental disorders also have a
lifetime history of at least one substance use disorder
(Kessler et al., 1996). The rates are highest in the 15-to
24-year-old age group (Kessler et al., 1994). The cross-
sectional data on association do not permit any
conclusion about causality or clinical prediction
(Kessler et al., 1996), but an appealing theory suggests
that a subgroup of the population abuses drugs in an
effort to self-medicate for the co-occurring mental
disorder. Little is actually known about the role of
mental disorders in increasing the risk of children and
adolescents for misuse of alcohol and other drugs.
Stress appears to play a role in both the process of
addiction and the development of many of the
comorbid conditions.

The review by Weinberg and colleagues (1998)
provides more detail on epidemiology and assessment
of alcohol and other drug use in adolescents and
describes several effective treatment approaches for
these problems. A meta-analysis and literature review
(Stanton & Shadish, 1997) concluded that family-
oriented therapies were superior to other treatment
approaches and enhanced the effectiveness of other
treatments. Multisystemic family therapy, discussed
elsewhere in this chapter, is effective in reducing
alcohol and other substance use and other severe
behavioral problems among adolescents (Pickrel &
Henggeler, 1996).

Eating Disorders

Eating disorders are serious, sometimes life-
threatening, conditions that tend to be chronic (Herzog
et al., 1999). They usually arise in adolescence and
disproportionately affect females. About 3 percent of
young women have one of the three main eating
disorders: anorexia nervosa, bulimia nervosa, or binge-
eating disorder (Becker et al., 1999). Binge-eating
disorder is a newly recognized condition featuring

Children and Mental Health

episodic  uncontrolled consumption,  without
compensatory activities, such as vomiting or laxative
abuse, to avert weight gain (Devlin, 1996). Bulimia, in
contrast, is marked by both binge eating and by
compensatory activities. Anorexia nervosa is
characterized by low body weight (< 85 percent of
expected weight), intense fear of weight gain, and an
inaccurate perception of body weight or shape
(DSM-IV). Its mean age of onset is 17 years (DSM-IV).
The causes of eating disorders are not known with
precision but are thought to be a combination of
genetic, neurochemical, psychodevelopmental, and
sociocultural factors (Becker e; al., 1999; Kaye et al.,
1999). Comorbid mental disorders are exceedingly
common, but interrelationships are poorly understood.
Comorbid disorders include affective disorders
(especially depression), anxiety disorders, substance
abuse, and personality disorders (Herzog et al., 1996).
Anorexia nervosa has the most severe consequence,
with a mortality rate of 0.56 percent per year (or 5.6
percent per decade) (Sullivan, 1995), a rate higher than
that of almost all other mental disorders (Herzog et al.,
1996). Mortality is from starvation, suicide, or
electrolyte imbalance (DSM-IV). The mortality rate
from anorexia nervosa is 12 times higher than that for
other young women in the population (Sullivan, 1995).
  Treatment of eating disorders entails psychotherapy
and pharmacotherapy, either alone or in combination.
Treatment of comorhid mental disorders also is
important, as is treatment of medical complications.
There are some controlled studies of the efficacy of
specific treatments for u&.&s with bulimia and binge-
eating disorder (Devlin, 1996), but fewer for anorexia
nervosa (Kaye et al., 1999). Controlled studies in
adolescents are rare for any eating disorder (Steiner and
Lock, 1998). Pharmacological studies in young aduEt
women found conflicting evidence of benefit from
antidepressants for anorexia and some reduction in the
frequency of binge eating and purging with tricychc
antidepressants, monoamine oxidase inhibitors, and
SSRIs (see Jimerson et al., 1993; Jacobi et al., 1997).
Studies mostly of adult women find cognitive-
behavioral therapy and interpersonal therapy to be
effective for bulimia and binge-eating disorder

167


Mental Health: A Report of the Surgeon General

(Fairbum et al., 1993; Devlin, 1996; Becker et al.,
1999). Clearly, more research is warranted for the
treatment of eating disorders, especially because a
sizable proportion of those with eating disorders have
limited response to treatment (Kaye et al., 1999).

Services Interventions

Treatment Interventions

This section examines the effectiveness of such
treatment interventions as outpatient, partial
hospitalization/day, residential, inpatient treatments,
and medication. Much of the research on their
effectiveness deals with children's outcomes largely
independent of diagnosis. As noted earlier in this
chapter (see Treatment Strategies), practitioners and
researchers previously shied away from diagnosis
because of the inherent difficulty of making a
diagnosis, concerns about labeling children, and the
limited usefulness of DSM classifications for children.
Each intervention was developed to treat a host of
mental health conditions in children and adolescents.
Each also was delivered in a wide range of settings.
Over time, the combination of interventions and
settings, with the exception of medication, became
conceptualized as "treatments," which stimulated
research on their effectiveness (Goldman, 1998). They
are not, however, treatments in the conventional sense
of the term because they are less specific than other
treatments with respect to indications, intensity (i.e.,
"dose"), and elements of the intervention. There is little
research describing treatment in actual clinical settings.

Outpatient Treatment

The term "outpatient treatment" covers a large variety
of therapeutic approaches, with most falling into the
broad theoretical categories of the psychodynamic,
interpersonal,  and behavioral psychotherapy.
Outpatient psychotherapy is the most common form of
treatment for children and adolescents, utilized
annually by an estimated 5 to 10 percent of children
and their families in the United States (Bums et al.,
1998). It is also the most extensively studied
intervention and, with over 300 studies, has the

strongest research base (Weisz et al., 1998). Outpatient
therapy is offered to individuals, groups, or families,
usually in a clinic or private office. The duration of
treatment varies from 6 to 12 weekly sessions to a year
or longer. Newer outpatient interventions (e.g., case
management, home-based therapy) that were developed
more recently for youth with severe disorders are
provided with greater frequency (i.e., daily) in the
home, school, or community. Those interventions are
reviewed later in this chapter.

The strongest support for the effectiveness of
outpatient treatment comes from a series of meta-
analyses. Meta-analyses are an important type of
research methodology, described in Chapter 1, that
enable one to combine research findings from separate
studies. Nine meta-analyses, published between 1985
and 1995, probed the effectiveness of research on
individual, group, and family therapy for children and
adolescents (Casey & Berman, 1985; Hazelrigg et al.,
1987; Weisz et al., 1987; Kazdin et al., 1990; Baer &
Nietzel,. 1991; Grossman & Hughes 1992; Shadish et
al., 1993; Weisz & Weiss, 1993; Weisz et al., 1995).
Although these meta-analyses vary in time period, age
groups, and meta-analytic approach, they were largely
restricted to studies of treatment given in a research
clinical setting, and their findings are relatively
consistent. The major findings indicated that the
improvements with outpatient therapy are greater than
those achieved without treatment; the treatment is
highly effective, as was found in meta-analyses of
adults (Brown, 1987); and the effects of treatment are
similar, whether applied to problems such as anxiety,
depression, or withdrawal (internalizing problems) or
to hyperactivity  and aggression (externalizing
problems) (Kazdin, 1996).

Given strong evidence of efficacy for outpatient
treatment, the question of applicability to real-world
settings has been examined. A meta-analysis was
performed on studies of the effectiveness of various
types of outpatient treatment, regardless of whether
their efficacy had been established through research
(Weisz et al., 1995). The researchers were able to
identify only nine studies of treated children in
nonresearch clinical settings where therapy was a

168


regular service of the clinic and was carried out by
practicing clinicians. Those nine studies demonstrated
little or no effect. Clearly, real-world therapy was
found to be less effective than that provided through a
research protocol. A variety of factors may account for
the gap, including less attention in real-world settings
to careful matching of patients with treatments, less
adherence to a treatment protocol, and less followup

care.

Partial Hospitalization/Day Treatment
Partial hospitalization, also called day treatment and
partial care, has been a growing treatment modality for
youth with mental disorders. Research on partial
hospitalization as an alternative to inpatient treatment
generally finds benefit from a structured daily
environment that allows youth to return home at night
to be with their family and peers.
Partial hospitalization is a specialized and intensive
form of treatment that is less restrictive than inpatient
care but is more intensive than the usual types of
outpatient care (i.e., individual, family, or group
treatment). The most frequently used type of partial
hospitalization is an integrated curriculum combining
education, counseling, and family interventions. The
setting, be it a hospital, school, or clinic, may be tied to
the theoretical orientation of the treatment, which
ranges from psychoanalytic to behavioral. Partial
hospitalization has also been used as a transitional
service after either psychiatric hospitalization or
residential treatment, at the point when the child no
longer needs 24-hour care but is not ready to be
integrated into the school system. It also is used to
prevent institutional placement.

Overall, the research literature points to positive
gains from adolescent use of day treatment, but most of
the studies are uncontrolled. Gains relate to academic
and behavioral improvement; reduction in, or delay of,
hospital and residential placement; and a return to
regular school for about 75 percent of patients (Baenen
et al., 1986; Gabel & Finn, 1986). Day treatment
programs are not being used as frequently as they might
be because third-party payers are reluctant to support
this form of treatment. They claim that the modality is

Children and Mental Health

ambiguous, that it induces demand among those who
would not otherwise seek treatment, and that its length,
treatment outcomes, and costs are unpredictable (Kiser
et al., 1986). Research is needed to address these
issues.

To date, the only controlled study of partial
hospitalization compared outcomes for young children
(ages 5 to 12) with disruptive behavior disorders who
received intensive day treatment with children who
received traditional outpatient treatment services (in
fact, a waiting list control) (Grizenko et al., 1993). The
results at 6 months favored day treatment in reducing
behavior problems, decreasing symptoms, and improv-
ing family functioning.

Findings from uncontrolled studies of partial
hospitalization are informative, although not conclu-
sive. Based on approximately 20 studies, multiple
benefits have been reported even over the long term
(see reviews by Kutash & Rivera, 1996; Grizenko,
1997). In general,  child behavior and family
functioning improve following partial hospitalization.
Findings for improved academic achievement are
mixed and possibly suggest that implementation of
school-based models should be considered. About
three-fourths of youth are reintegrated into regular
school, often with the help of special education or other
school-  or community-based services. Several
uncontrolled studies found that day treatment could
prevent youth from entering other costly placements
(particularly inpatient and residential treatment
centers), which suggests that partial hospitalization
may reduce overall costs of treatment (Kutash &
Rivera, 1996). Finally, family participation during and
following day treatment is essential to obtaining and
maintaining results (Kutash & Rivera, 1996).

Residential Treatment Centers

Residential treatment centers are the second most
restrictive form of care (next to inpatient
hospitalization) for children with severe mental
disorders. Although used by a relatively small
percentage (8 percent) of treated children, nearly one-
fourth of the national outlay on child mental health is
spent on care in these settings (Bums et al., 1998).

169


Mental Health: A Report of the Surgeon General

However, there is only weak evidence for their
effectiveness.

A residential treatment center (RTC) is a licensed
24-hour facility (although not licensed as a hospital),
which offers mental health treatment. The types of
treatment vary widely; the major categories are
psychoanalytic,  psychoeducational, behavioral
management, group therapies, medication management,
and peer-cultural. Settings range from structured ones,
resembling psychiatric hospitals, to those that are more
like group homes or halfway houses. While formerly
for long-term treatment (e.g., a year or more), RTCs
under managed care are now serving more seriously
disturbed youth for as briefly as 1 month for intensive
evaluation and stabilization.

Concerns about residential care primarily relate to
criteria for admission; inconsistency of community-
based treatment established in the 1980s; the costliness
of such services (Friedman & Street, 1985); the risks of
treatment, including failure to learn behavior needed in
the community; the possibility of trauma associated
with the separation from the family; difficulty
reentering the family or even abandonment by the
family; victimization by RTC staff; and learning of
antisocial or bizarre behavior from intensive exposure
to other disturbed children (Barker, 1998): These
concerns are discussed below.

In the past, admission to an RTC has been justified
on the basis of community protection, child protection,
and benefits of residential treatment per se (Barker,
1982). However, none of these justifications have stood
up to research scrutiny. In particular, youth who display
seriously violent and aggressive behavior do not appear
to improve in such settings, according to limited
evidence (Joshi & Rosenberg, 1997). One possible
reason is that association with delinquent or deviant
peers is a major risk factor for later behavior problems
(Loeber & Farrington, 1998). Moreover, community
interventions that target change in peer associations
have been found to be highly effective at breaking
contact with violent peers and reducing aggressive
behaviors (Henggeler et al., 1998). Although removal
from the community for a time may be necessary for
some, there is evidence that highly targeted behavioral

interventions provided on an outpatient basis can
ameliorate such behaviors (Brestan & Eyberg, 1998).
For children in the second category (i.e., those needing
protection from themselves because of suicide attempts,
severe substance use, abuse, or persistent running
away), it is possible that a brief hospitalization for an
acute crisis or intensive community-based services may
be more appropriate than an RTC. An intensive long-
term program such as an RTC with a high staff to child
ratio may be of benefit to some children, especially
when sufficient supportive services are not available in
their communities. In short, there is a compelling need
to clarify criteria for admission to RTCs (Wells, 1991).
Previous criteria have been replaced and strengthened
(i.e., with an emphasis on resources needed after
discharge) by the National Association of Psychiatric
Treatment Centers for Children (1990).
  The evidence for outcomes of residential treatment
comes from research published largely in the 1970s and
1980s and, with three exceptions, consists of
uncontrolled studies (see Curry, 1991).
  Of the three controlled studies of RTCs, the first
evaluated a program called Project Re-Education (Re-
Ed). Project Re-Ed, a model of residential treatment
developed in the 196Os, focuses on training teacher-
counselors, who are backed up by consultant mental
health specialists. Project Re-Ed schools are located
within communities, facilitating therapeutic work with
the family and allowing the child to go home on
weekends. Camping also is an important component of
the program, inspired by the Outward Bound Schools
in England. The first published study of Project Re-Ed
compared outcomes for adolescent males in Project Re-
Ed with untreated disturbed adolescents and with
nondisturbed adolescents. Treated adolescents
improved in self-esteem, control of impulsiveness, and
internal control compared with untreated adolescents,
according to ratings by Project Re-Ed staff and by
families (Weinstein, 1974). A 1988 followup study of
Project Re-Ed found that when adjustment outcomes
were maintained at 6 months after discharge from
Project Re-Ed, those outcomes were predicted more by
community factors at admission (e.g., condition of the
family and school, supportiveness of the local

170


community) than by client factors (e.g., diagnosis,
school achievement, age, IQ). This suggested that
interventions in the child's community might be as
effective as placement in the treatment setting (Lewis,
1988).

The only other controlled study compared an RTC
with therapeutic foster care through the Parent
Therapist Program. Both client groups shared
comparable backgrounds and made similar progress in
their respective treatment program. However, the
residential treatment cost twice as much as therapeutic
foster care (Rubenstein et al., 1978).

Despite strong caveats about the quality,
sophistication, and import of uncontrolled studies,
several consistent findings have emerged. For most
children (60 to 80 percent), gains are reported in areas
such as clinical status, academic skills, and peer
relationships. Whether gains are sustained following
treatment appears to depend on the supportiveness of
the child's post-discharge environment (Wells, 1991).
Several studies of single institutions report main-
tenance of benefits from 1 to 5 years later (Blackman et
al,, 1991; Joshi &Rosenberg, 1997). In contrast, a large
longitudinal six-state study of children in publicly
funded RTCs found at the `I-year followup that 75
percent of youth treated at an RTC had been either
readmitted to a mental health facility (about 45 percent)
or incarcerated in a correctional setting (about 30
percent) (Greenbaum et al., 1998).

In summary, youth who are placed in RTCs clearly
constitute a difficult population to treat effectively. The
outcomes of not providing residential care are
unknown. Transferring gains from a residential setting
back into the community may be difficult without clear
coordination between RTC staff and community
services, particularly schools, medical care, or
community clinics. Typically, this type of coordination
or aftercare service is not available upon discharge. The
research on RTCs is not very enlightening about the
potential to substitute RTC care for other levels of care,
as this requires comparisons with other interventions.
Given the limitations of current research, it is
premature to endorse the effectiveness of residential
treatment for adolescents. Moreover, research is needed

171

Inpatient hospitalization is the most restrictive type of
care in the continuum of mental health services for
children and adolescents. Questions about excessive
and inappropriate use of hospitals were raised in the
early 1980s (Knitzer, 1982) and clearly documented
thereafter in rising admission rates from the 1980s into
the mid- 199Os, without evidence of increased social or
clinical need for such treatment (Weller et al., 1995).
Inpatient care consumes about half of child mental
health resources, based on the latest estimate available
(Bums, 199 l), but it is the clinical intervention with the
weakest research support. Nevertheless, because some
children with severe disorders do require a highly
restrictive treatment environment, hospitals are
expected to remain an integral component of mental
health care (Sir@ et al., 1994). More concerted
attention to the risks and benefits of hospital use is
critical, however, along with development of
community-based alternative services.
Research on inpatient treatment mostly consists of
uncontrolled studies (Curry, 1991). Factors that are
likely to predict benefit have been identified from such
studies. Beneficial factors were found to include higher
child intelligence; the quality of family functioning and
family involvement in treatment; specific
characteristics of treatment (e.g., completion of
treatment program and planned discharge); and the use
of aftercare services. Neither age nor gender affected
prognosis after hospitalization. The prognosis was poor
for several clinical characteristics, including children
with a psychotic diagnosis and antisocial features with
conduct disorder (Kutash & Rivera, 1996).
Only three controlled studies evaluated the
effectiveness of inpatient treatment: one that random-
ized antisocial children to specific interventions on an
inpatient unit (Kazdin et al., 1987a, 1987b) and two
older clinical trials (Flomenhaft, 1974; Winsberg et al.,
1980). All three studies demonstrated that community
care was at least as effective as inpatient treatment.

Children and Mental Health

to identify those groups of children and adolescents for
whom the benefits of residential care outweigh the
potential risks.


Mental Health: A Report of the Surgeon General

More recently there have been preliminary
favorable findings from a randomized trial of inpatient
treatment versus multisystemic therapy (MST), an
intensive home-based intervention. For example, MST
was more effective than psychiatric hospitalization in
reducing antisocial behavior,  improving family
structure and cohesion, improving social relationships,
and keeping children in school and out of institutions
(after the initial period when the control group was in
the hospital). Hospitalized youth reported improved
self-esteem, and youth in both treatment conditions
showed comparable decreases in emotional distress
(Henggeler et al., 1998). A great deal more research is
needed on inpatient hospitalization, as it is by far the
costliest and most restrictive form of care. Recent
changes in health care management have resulted in
short lengths of stay for children and adolescents.
Preliminary results from the study of MST indicate that
intensive home-based services may be a viable
alternative to hospitalization. However, even when
such services are available, there may be a need for
brief 24-hour stabilization units for handling crises (see
Crisis Services).

Newer Community-Based Interventions '
Since the 1980s the field of children's mental health
has witnessed a shift from institutional to community-
based interventions. The forces behind this
transformation are presented in a subsequent section,
Service Delivery. This section attempts to answer the
question of whether community-based interventions are
effective. It covers a range of comprehensive
community-based interventions, including case
management, home-based services, therapeutic foster
care, therapeutic group homes, and crisis services.
Although the evidence for the benefits of some of these
services is uneven at best, even uncontrolled studies
offer a starting point for studying the effectiveness and
feasibility of their implementation. Many of the
evaluations to date offer a first glimpse into the benefits
of these services and the extent to which they may be
valuable for further examination. Of these inter-
ventions, the most convincing evidence of effectiveness

is for home-based services and therapeutic foster care,
as discussed below.

There is a special emphasis throughout this section
on "children with serious emotional disturbances," as
many of these community-based services are targeted
to this population of the most serious severely affected
children. The term serious emotional disturbance refers
to a diagnosed mental health problem that substantially
disrupts a child's ability to function socially,
academically, and emotionally. It is not a formal
DSM-IV diagnosis but rather a term that has been used
both within states and at the Federd level to identify a
population of children with significant functional
impairment due to mental, emotional, and behavioral
problems who have a high need for services. The
official definition of children with serious emotional
disturbance adopted by the Substance Abuse and
Mental Health Services Administration is "persons
from birth up to age 18 who currently or at any time
during the past year had a diagnosable mental,
behavioral, or emotional disorder of sufficient duration
to meet diagnostic criteria specified within the DSM-
III-R, and that resulted in functional impairment which
substantially interferes with or limits the child's role or
functioning in family, school, or community activities"
(SAMHSA, 1993, p. 29425).15 The term is used in a
variety of Federal statutes in reference to children
fitting that description and does not signify any
particular diagnosis per se; rather, it is a legal term that
triggers a host of mandated services to meet the needs
of these children (see Service Delivery section).

Case Management

Case management is an important and widespread
component of mental health services, especially for
children with serious emotional disturbances. The main
purpose of case management is to coordinate the
provision of services for individual children and their
families who require services from multiple service
providers. Case managers take on roles ranging from
brokers of services to providers of clinical services.

" This definition is also used with newer diagnostic systems, such
as DSM-IV.

172


Children and Mental Health

There is a considerable amount of variation in models
of case management. In one important model, called
"wraparound," case managers involve families in a
participatory process of developing an individualized
plan focusing on individual and family strengths in
multiple life domains. Research on wraparound is still
in its early stages (Bums & Goldman, 1999).
  There have been controlled studies of three
programs that used case managers who work
individually rather than as part of an interdisciplinary
team (discussed later). In one study of the Partner's
Project in Oregon, case management was compared
with "usual services," which did not include case
management (Gratton et al., 1995). The authors found
at 1 -year followup that children in the Partner's Project
scored significantly higher on measures of social
competence and had received more individualized,
comprehensive services, and a greater degree of service
coordination.

The second study compared the outcomes of
intensive case management and regular case
management for mentally ill homeless children in
Seattle (Cauce et al., 1994). The case managers in the
intensive condition had lower caseloads, were required
to spend more hours supervising the youth,.had flexible
funds (for clothing, transportation, etc.) at their
disposal, spent more hours in consultation with
psychologists, and were of higher educational status.
After 1 year, the study found that both groups showed
substantial yet similar improvement in mental health
and social adjustment.

  A model known as Children and Youth Intensive
Case Management (CYICM) was evaluated in two
controlled studies. The program has been described as
an Expanded Broker Model, which means that the case
manager, in addition to brokering services, is
responsible for assessment, planning, linking, and
advocating on behalf of the youth and family. Case
managers, with caseloads of 10 children, are given
$2,000 of flexible funds per child each year to purchase
treatment and ancillary services (e.g., transportation
and educational aids). In the first study, the authors

found that children in the program spent significantly
more days in the community between episodes of
psychiatric hospitalization and were hospitalized for
fewer days than before enrollment (Evans et al., 1994).
A subsequent study evaluated a random sample of 199
children enrolled in CYICM (Evans et al., 1996b).
Findings at 3-year followup indicated significant
behavioral improvements and decreases in unmet
medical, recreational, and educational needs compared
with findings at enrollment. As in the previous study,
children who had been in CYICM for 2 years had spent
fewer days in psychiatric hospitals and more days in
community settings during the intervals between
hospitalizations. This study went further to compare
their hospital utilization with that by children not
enrolled in the program. Although CYICM clients spent
more days in psychiatric hospitals before enrollment,
they used inpatient services after enrollment
significantly less than did non-enrollees. CYICM
clients' hospital admissions declined fivefold after
enrollment whereas among non-enrollees the decline in
admission rates was less than half that value. This
difference translated into a savings of almost
$8,000,000 for New York State, where the project took
place.

Some research has investigated the effects of
extending case management on children with a dual
diagnosis of a mental disorder and a substance abuse
problem. Within the CYICM program, researchers
looked at whether adolescents with mental disorders
and substance abuse problems derived comparable
benefits from the program as did those without
substance abuse problems (Evans et al., 1992). No
significant differences were found in the average
number of inpatient admissions both before and after
enrollment. There was also no significant difference
between groups in the average decrease from pre- to
postenrollment in the number of days spent in
hospitals. These results indicate that case management
can be as effective for youth presenting with substance
abuse problems as for youth presenting with other
psychiatric disorders.

173


Mental Health: A Report of the Surgeon General

Team Approaches to Case Management
Several studies assessed the value of case management
as part of a treatment team. In a randomized trial in
North Carolina (Burns et al., 1996), youth served by an
interdisciplinary treatment team led by a case manager
were compared with a control group of youth served by
a treatment team led by their primary clinician in the
role of case manager (also called clinician case
manager). At l-year followup, case managers in the
experimental group reported spending significantly
more time with their clients, as well as significantly
more time on the core functions of case management
(e.g., outreach; assessment of strengths, needs, and
resources; service planning and monitoring; linking,
referral, and advocacy; and crisis intervention). The
experimental group also remained in the case-managed
program longer, spent fewer days in psychiatric
hospitals, and received more community-based services
and a more comprehensive array of services. Although
both groups showed similar clinical and functional
improvements, parents of youth in the experimental
group reported more satisfaction with the service
system. The study concluded that traditional case
managers, rather than clinician case managers, provide
a more cost-effective method for attaining positive
behavioral outcomes and access to mental health
services.

Another example of a team approach to case
management is the Family Centered Intensive Case
Management (FCICM) program. This was originally
created as a variation of Child and Youth Intensive
Case Management in New York, with the later addition
of a wraparound approach. The wraparound approach
is based on a belief that the child and family should be
placed at the center of an array of coordinated health
and mental health, educational, and other social welfare
services and resources, which a case manager wraps
around the patient and family. In a randomized trial,
children were assigned to either FCICM or Family-
Based Treatment (Evans et al., 1996a). Family-Based
Treatment included training, support, and respite care
for foster families but did not include case managers.

The findings at 18 months (or at discharge) indicated
that children in FCICM had significantly fewer
behavioral symptoms  and significantly greater
improvements in overall functioning than those in
Family-Based Treatment. In addition, the average
annual cost of FCICM was less than half that of
Family-Based Treatment.

The Fostering Individualized Assistance Program
(FLAP) is an example of case management provided
through a wraparound approach. The effectiveness of
this model, which used clinical case managers, was
compared with standard foster care in a randomized
trial involving 13 1 children and their families (Clark et
al., 1998). The most important duty of the FIAP case
managers was to arrange monthly team meetings for the
monitoring of individualized service plans. Although
both groups showed significant improvement in their
behavioral adjustment over a 3%year period, children
in the FIAP group were less likely to change
placements, and boys in the group reported better social
adjustment and fewer delinquencies. Older youth in the
group were more likely to maintain placements in
homes of relatives and less likely to run away. Youth in
FIAP were also absent from school less often and spent
fewer days suspended from school. Overall, youth in
the FIAP group showed more improvement than did
youth in standard foster care. Multiple uncontrolled
studies of case management using a wraparound
approach were summarized in a recent monograph
focusing on the wraparound process (Bums &
Goldman, 1999). Overall, the reviewed studies,
although using uncontrolled methods, offer emerging
evidence of the potential effectiveness of case
management using a wraparound process.
  While evidence is limited and many of the positive
outcomes focus on service use rather than clinical
status, there is some indication that case management
is an effective intervention for youth with serious
emotional disturbances. Studies in this area are difficult
to conduct because of resource limitations and of
varying approaches to case management. Agreement on
standards for specific case management models is

174


needed in order to proceed with efficient and reliable
controlled research in this area. In addition, future
research needs to address the issue of cost-
effectiveness, as some evidence presented above has
shown savings from less utilization of institutional care.

Home-Based Services

This section describes the strong record of
effectiveness for home-based services, which provide
very intensive services within the homes of children
and youth with serious emotional disturbances. A major
goal is to prevent an out-of-home placement (i.e., in
foster care, residential, or inpatient treatment). Home-
based services are usually provided through the child
welfare, juvenile justice, and/or mental health systems.
They are also referred to as in-home services, family
preservation services, family-centered services, family-
based services, or intensive family services.
Stroul(l988) identified three major goals of home-
based services: to preserve the family's integrity and
prevent unnecessary out-of-home placements; to put
adolescents and their families in touch with community
agencies and individuals, thus creating an outside
support system; and to strengthen the family's coping
skills and capacity to function effectively in the
community after crisis treatment is completed. The
specific services provided most often include
evaluation, assessment, counseling, skills training, and
coordination of services. The historical evolution of
home-based services is discussed further under Support
and Assistance for Families in Service Delivery.
  The evidence for the benefits of home-based
services was recently evaluated in a meta-analysis of
controlled studies only (Fraser et al., 1997). The
analysis referred to home-based services as "family
preservation services"; these were sponsored either by
the child welfare or juvenile justice systems. For 22
studies the authors analyzed specific measures such as
out-of-home placement, family reunification, arrest,
incarceration, and hospitalization, with the control
group defined as youth receiving "usual" or "routine"
services. While a majority of the studies demonstrated
marginal gains in effectiveness, other services appeared
to be significantly more effective than usual services.

175

Within the child welfare system, particularly effective
family reunification programs were the Homebuilders
Program in Tacoma, Washington, which was designed
to reunify abused and neglected children with their
families by providing family-based services (Fraser et
al., 1996), and the family reunification programs in
Washington State and in UtzLh (Pecora et al., 1991).
Studies suggested that 75 to 90 percent of the children
and adolescents who participated in such programs
subsequently did not require placement outside the
home. The youths' verbal and physical aggression
decreased, and cost of services was reduced (Hinckley
& Ellis, 1985). The success of these family
preservation programs is based on the following:
services are delivered in a home and community
setting; family members are viewed as colleagues in
defining a service plan; back-up services are available
24 hours a day; skills are built according to the
individual needs of family members; marital and family
interventions are offered; community services are
efficiently coordinated; and assistance with basic needs
such as food, housing, and clothing is given (Fraser et
al., 1997).

Multisystemic Therapy

Multisystemic therapy programs within the juvenile
justice system have demonstrated effectiveness. MST
is an intensive, short-term, home- and family-focused
treatment approach for youth with severe emotional
disturbances. MST was originally based on risk factors
that were identified in the published literature and was
designed for delinquents. MST intervenes directly in
the youth's family, peer group, school, and
neighborhood by identifying and targeting factors that
contribute to the youth's problem behaviors. The main
goal of MST is to develop skills in both parents and
community organizations affecting the youth that will
endure after brief (3 to 4 months) and intensive

Children and Mental Health

The findings are presented below according to their
organizational sponsorship by either child welfare or
juvenile justice system.

Family Preservation Programs Under the Child
Welfare System


Mental Health: A Report of the Surgeon General

treatment. MST was constructed around a set of
principles that were put into practice and then
expanded upon in a manual (Henggeler et al., 1998).
Elaborate training, supervision, and monitoring for
treatment adherence make this an exemplary approach.
Furthermore, publication of an MST manual and the
high level of clinical training in MST distinguish this
model from other types of family preservation services.
The efficacy of MST has been established in three
randomized clinical trials for delinquents within the
juvenile justice system. The first of these studies took
place in Memphis, Tennessee, and revealed that MST
was more effective than usual community services in
decreasing adolescent behavioral problems and in
improving family relations (Henggeler et al., 1986).
The second was conducted in Simpsonville, South
Carolina, and compared outcomes for 84 juvenile
offenders randomly assigned to either MST or usual
services. At 59 weeks after referral, youth who had
received MST had fewer arrests and self-reported
offenses and had spent an average of 10 fewer weeks
incarcerated than did the youth in usual services. In
addition, families served by MST reported increased
family cohesion and decreased youth aggression in peer
relations (Henggeler et al., 1992). In the third study,
MST was compared with individual therapy in
Columbia, Missouri, and was found to be more
effective in ameliorating adjustment problems in
individual family members. A 4-year followup of
rearrest data indicated that MST was more effective
than individual therapy in preventing future criminal
behavior, including violent offenses (Borduin et al.,
1995). Studies found improved behavior, fewer arrests,
and lower costs. These findings encouraged the
investigators to test the effectiveness of MST in other
organizational settings (e.g., child welfare and mental
health), allowing them to target other clinical
populations, including youthful sex offenders (Borduin
et al., 1990), abused and neglected youth (Brunk et al.,
1987), and child psychiatric inpatients (see Inpatient
Treatment section). Initial results are promising for
youth receiving  MST instead of psychiatric
hospitalizations (Henggeler et al., 1998). As expected,
some adjustments to MST are required to handle

children who are dangerous to themselves and who do
not respond as quickly to treatment as'the delinquent
youth in previous studies. The efficacy of MST was
demonstrated in real-world settings but only by one
group of investigators; thus, the results need to be
reproduced by others and future effectiveness research
needs to determine whether the same benefits can be
demonstrated with less support from experts.

Therapeutic Foster Care

Therapeutic foster care is considered the least
restrictive form of out-of-home therapeutic placement
for children with severe emotioni disorders. Care is
delivered in private homes with specially trained foster
parents. The combination of family-based care with
specialized treatment interventions creates "a
therapeutic environment in the context of a nurturant
family home" (Stroul & Friedman, 1988). These
programs, which are often funded jointly by child
welfare and mental health agencies, are responsible for
arranging for foster parent training and oversight.
Although the research base is modest compared with
`other widely used interventions, some studies have
reported positive outcomes, mostly related to
behavioral improvements and movement to even less
restrictive living environments, such as traditional
foster care or in-home placement.
While therapeutic foster care programs vary
considerably, they have some features in common.
Children are placed with foster parents who are trained
to work with children with special needs. Usually, each
foster home takes one child at a time, and caseloads of
supervisors in agencies overseeing the program remain
small. In addition, therapeutic foster parents are given
a higher stipend than that given to traditional foster
parents, and they receive extensive preservice training
and in-service supervision and support. Frequent
contact between case managers or care coordinators
and the treatment family is expected, and additional
resources and traditional mental health services may be
provided as needed.

Therapeutic foster care programs are inexpensive
to start (few requirements for facilities or salaried staff)
and have lower costs than more restrictive programs. In

176


Ontario, a study found that therapeutic foster care cost
half that of residential treatment center placement for
the same period of time (Rubenstein et al., 1978).
There have been four efficacy studies, each with
randomized, controlled designs. In the first study, 20
youths who had been previously hospitalized were
assigned to either therapeutic foster care or other out-
of-hospital settings, such as residential treatment
centers or homes of relatives. The youths in therapeutic
foster care showed more improvements in behavior and
lower rates of reinstitutionalization, and the costs were
lower than those in other settings (Chamberlain &
Reid, 1991). In another study, which concentrated on
youths with histories of chronic delinquency, those in
therapeutic foster care were incarcerated less frequently
and for fewer days per episode than youths in other
residential placements. Thus, at 2-year followup, 44
percent fewer children in therapeutic foster care were
incarcerated (Chamberlain & Weinrott, 1990). In a
third study, outcomes for children in therapeutic foster
care were compared with those of children in standard
foster care. Children in therapeutic foster care were less
likely during a 2-year study to run away or to be
incarcerated and showed greater emotional and
behavioral adjustment (Clark et al., 1994). In the most
recent study, therapeutic foster care was compared with
group care: children receiving the former showed
significantly fewer criminal referrals, returned to live
with relatives more often, ran away less often, and were
confined to detention or training schools less often
(Chamberlain & Reid, 1998).

  All four studies of treatment effectiveness showed
that youths in therapeutic foster care made significant
improvements in adjustment, self-esteem, sense of
identity, and aggressive behavior. In addition, gains
were sustained for some time after leaving the
therapeutic foster home (Bogart, 1988; Hawkins et al.,
1989; Chamberlain & Reid, 1991).

There are also promising indications from
uncontrolled studies. Looking at 18 reports from 12
therapeutic foster care programs across the country,
Kutash and Rivera (1996) concluded that between
about 60 and 90 percent of youth treated in therapeutic
foster homes are discharged to less restrictive settings.

Children and Mental Health

Three programs also reported followup data, indicating
that about 70 percent of youth treated in therapeutic
foster homes remained in less restrictive settings for a
substantial amount of time after treatment.

It is clear from these studies that therapeutic foster
care produces better outcomes at lower costs than more
restrictive types of placement. Furthermore, with the
fairly recent development of standards for therapeutic
foster care, as well as a standards review instrument
(Foster Family-Based Treatment Association, 1995),
services can be monitored for quality and fidelity to the
therapeutic approach, making it easier to ascertain if
the approach taken produces the favorable outcomes.

Therapeutic Croup Homes

For adolescents with serious emotional disturbances the
therapeutic group home provides an environment
conducive to learning social and psychological skills.
This intervention is provided by specially trained staff
in homes located in the community, where local
schools can be attended. Each home typically serves 5
to 10 clients and provides an array of therapeutic
interventions. Although the types and combinations of
treatment vary, individual psychotherapy, group
therapy, and behavior modification are usually
included.

There are two major models of therapeutic group
homes. The first is the teaching family model,
developed at the University of Kansas, then moved to
Boys Town in Omaha, Nebraska (Phillips et al., 1974).
The second is the Charley model, developed at the
Menninger Clinic. Both models use their staff as the
key agents for change in the disturbed youth; selection
and training of the staff are emphasized. Both models
employ couples who live at the homes 24 hours a day.
The teaching family model emphasizes structured
behavioral interventions through teaching new skills
and positively reinforcing improved behavior. Other
group homes use individual psychotherapy and group
interaction.

There is a dearth of research on the effectiveness of
therapeutic group home programs targeted toward
emotionally disturbed adolescents. These homes have
been developed primarily for children under the care of

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Mental Health: A Report of the Surgeon General

juvenile justice or social welfare. A dissertation
(Roose, 1987) studied the outcomes of 20 adolescents
treated in a group home. Adolescents with severe
character pathology or major psychiatric disorders were
not admitted. Twenty group home adolescents were
compared with 20 untreated adolescents. At an 18-
month followup, 90 percent of the treated group had
fair or good functioning, defined by improved
relationships with parents, peers, and fellow workers.
Only 45 percent of the untreated group achieved similar
functioning. The treated group experienced a
significant decrease in psychopathology, while the
untreated group did not.

Therapeutic group homes were compared with
therapeutic foster care in two studies. The first study
found equivalent gains for youth in the two
interventions, but group home placement was twice as
costly as therapeutic foster care (Rubenstein et al.,
1978). A second study, a randomized clinical trial,
compared the outcomes for 79 males with histories of
juvenile delinquency placed in either group homes or
therapeutic foster homes (Chamberlain & Reid, 1998).
The boys treated in therapeutic foster homes had
significantly fewer criminal referrals and returnedmore
often to live with relatives, suggesting this to be a more
effective intervention. The implication of these studies
is that if therapeutic foster care is available, and if the
foster parents are willing to take youth with serious
behavioral problems, therapeutic foster care may be a
better treatment choice for youth who previously would
have been placed in group homes.

Existing research suggests that therapeutic group
home programs produce positive gains in adolescents
while they are in the home, but the limited research
available reveals that these changes are seldom
maintained after discharge (Kirigin et al., 1982). The
conclusion may be similar to that for residential
treatment center placement: long-termoutcomes appear
to be related to the extent of services and support after
discharge. Adolescents who have been placed in
therapeutic group homes because of mental disorders
frequently have histories of multiple prior placements
(particularly in foster homes), a situation that is
associated with a poor prognosis. Thus, future

programs would benefit from assessing alternative
strategies for treatment after discharge from group
homes.

Crisis Services

Crisis services are used in emergency situations either
to furnish immediate and sufficient care or to serve as
a transition to longer term care within the mental health
system. These services are extremely important because
many youth enter the mental health service system at a
point of crisis. Crisis services include three basic
components: (1) evaluation and assessment, (2) crisis
intervention and stabilization, and (3) followup
planning. The goals of crisis services include
intervening immediately, providing brief and intensive
treatment, involving families in treatment, linking
clients and families with other community support
services, and averting visits to the emergency
department or hospitalization by stabilizing the crisis
situation in the most normal setting for the adolescent.
Crisis services include telephone hotlines, crisis group
homes, walk-in crisis intervention services, runaway
shelters, mobile crisis teams, and therapeutic foster
homes when used for short-term crisis placements.
Crisis programs are small in order to facilitate close
relationships among the staff, child, and family. Crisis
staff are required to have skills and experience in the
areas of assessment, emergency treatment, and family
support. Short-term services are provided, with the staff
meeting more frequently with the client at the outset of
the crisis. A typical treatment plan consists of 10
sessions over a period of 4 to 6 weeks. Crisis services
usually are available 24 hours a day, 7 days a week
(Goldman, 1988).

Research on crisis services consists exclusively of
uncontrolled studies. Kutash and Rivera (1996)
reviewed 12 studies with pre-postI designs. Positive
behavioral and adjustment outcomes for youth
presenting to crisis programs and emergency
departments across the country were reported in all of

I6 Pre-post design: a research design in which a measure is
compared on the same individual research subjects before and after
an intervention.

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Children and Mental Health

the studies. Most programs also demonstrated the
capacity to prevent institutionalization.
  The most recent studies examine three different
models: a mobile crisis team, short-term residential
services, and intensive in-home service. The first study
examined the Youth Emergency Services (YES)
program in New York. This program included amobile
crisis team that sent clinicians directly to the scene of
the crisis. The data showed that YES prevented
emergency department visits and out-of-home
placements (Shulman & Athey, 1993).
A second crisis program, in Suffolk County, New
York, involved short-term residential services. In a
study of 100 children served by the program over a 2-
year period, more than 80 percent were discharged in
less than 15 days. Most were diverted from inpatient
hospitalization, and inpatient admissions to the state
children's psychiatric center for Suffolk County were
reduced by 20 percent after the program was
established (Schweitzer & Dubey, 1994).
  In the third study, records were analyzed from a
large sample of youth (nearly 700) presenting to the
Home Based Crisis Intervention (HBCI) program in
New York over a 4-year period. Youth received short-
term, intensive, in-home emergency services. After an
average service episode of 36 days, 95 percent of the
youth were referred to, or enrolled in, other services
(Boothroyd et al., 1995). The HBCI program was
established at eight locations across the State of New
York. Overall, programs with more access to
community resources reported shorter average lengths
of services.

Although crisis and emergency services represent
a promising intervention, the research done so far only
includes uncontrolled studies, limiting the conclusions
that can be drawn. Kutash and Rivera (1996)
recommend additional effectiveness research using
controlled study designs and comparing differences
between the various types of crisis services. Finally,
there remains a need for investigation of cost-
effectiveness as well as an exploration of the
integration of crisis services into systems of care.

Service Delivery
The focus of this section is on service systems-their
origins, nature, and financing and also their
effectiveness, delivery, and utilization-rather than on
individual interventions and treatments, which were
covered in previous sections of this chapter.
About 20 years ago it became clear that children
and families were failing to receive adequate care from
the public sector, whose services were fragmented,
inadequate, and overreliant on institutional care. As a
result, the emphasis of service delivery has shifted to
systems of care that are designed to provide culturally
competent, coordinated se&ices; community-based
services; new financing arrangements in the private and
public sectors; family participation in decisionmaking
about care for their children; and individualized care
drawing on treatment and social supports called
wraparound services, described above. Thus, there has
been progress in transforming the nature of service
delivery and its financing, but the central question of
the effectiveness of systems of care has not yet been
resolved.

At the outset, it is important to note that while
systems of care are designed to provide the appropriate
level of services for all children, it is children with
serious emotional disturbances, particularly children
who are involved in multiple service sectors, who are
likely to benefit the most. There are approximately 6
million to 9 million children and adolescents in the
United States with serious emotional disturbances
(Friedman et al., 1996a; Lavigne et al., 1996),
accounting for 9 to 13 percent of all children (Friedman
et al., 1996a; Friedman et al., 1998).
The system for delivering mental health services to
children and their families is complex, sometimes to the
point of inscrutability-a patchwork of providers,
interventions, and payers. Much of the complexity
stems from the multiple pathways into treatment and
the multiple funding streams for services. However,
once care has begun, the interventions and settings
themselves are generally the same as those covered in
previous sections of this chapter.

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Mental Health: A Report of the Surgeon General

Service Utilization

This section presents research findings about the
utilization of mental health services by children and
adolescents. The foremost finding is that most children
in need of mental health services do not get them.
Another finding refutes the common perception that
children who do not need specialty mental health
services are more likely to receive such services than
those who really do need them. This section also
discusses children's high dropout rates from treatment
and the significance of this problem for children of
different cultural backgrounds.

Utilization in Relation to Need

The conclusion that a high proportion of young people
with a diagnosable mental disorder do not receive any
mental health services at all (Bums et al., 1995; Leaf et
al., 1996) reinforces an earlier report by the U.S. Office
of Technology Assessment ( 1986), which indicated that
approximately 70 percent of children and adolescents
in need of treatment do not receive mental health
services. Only one in five children with a serious
emotional disturbance used mental health specialty
services, although twice as many such children
received some form of mental health intervention
(Bums et al., 1995). Thus, about 75 to 80 percent fail to
receive specialty services, and the majority of these
children fail to receive any services at all, as reported
by their families. The most likely reasons for
underutilization relate to the perceptions that treatments
are not relevant or are too demanding or that stigma is
associated with mental health services; the reluctance
of parents  and children to seek treatment;
dissatisfaction with services; and the cost of treatment
(Pavuluri et al., 1996; Kazdin et al., 1997).

Studies do, however, demonstrate a clear and
strong relationship between use of services and
presence of a diagnosis and/or presence of impaired
functioning. In the study by Leaf and colleagues
(1996), young people with both a diagnosis and
impaired functioning were 6.8 times more likely to see
a specialist than were those with no diagnosis and a
higher level of functioning.

The study by Bums and colleagues also showed
where children were receiving treatment. Of those who
received services and had both a diagnosis and
impaired functioning, about 40 percent received
services in the specialty mental health sector, about 70
percent received services from the schools, about 11
percent from the health sector, about 16 percent from
the child welfare sector, and about 4 percent from the
juvenile justice sector. For nearly half the children with
serious emotional disturbances who received services,
the public school system was the sole provider (Bums
et al., 1995). After reviewing thFse findings and the
findings from other studies, Hoagwood and Erwin
(1997) also concluded that schools were the primary
providers of mental health services for children.

Early Termination of Treatment

Among children and adolescents who begin treatment,
the dropout rate is high, although estimates vary
considerably. According to Kazdin and colleagues
(1997), 40 to 60 percent of families who begin
treatment terminate it prematurely. Armbruster and
Fallon (1994) found that the great majority of children
who enter outpatient treatment attend for only one or
two sessions. One of the explanations for the high
dropout rate and for failure to keep the first
appointment is that referrals are often made not by
children and adolescents or their families, but by
schools, courts, or other agencies. Most of the research
on dropping out has focused exclusively on examining
demographic or diagnostic correlates of dropping out,
and few researchers have directly asked the children or
their parents about their reasons for discontinuing
treatment.

  There are a number of effective interventions to
reduce dropout from treatment and to increase
enrollment and retention (Szapocznik et al., 1988;
McKay et al., 1996; Santisteban et al., 1996). Offering
services in the schools improves treatment access
(Catron & Weiss, 1994). A variety of case management
approaches can also improve engagement of low-
income families in the treatment of their children
(Bums et al., 1996; Koroloff et al., 1996a; Lambert &
Guthrie, 1996).

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poverty and Utilization

poverty status has been associated with both dropping
out of services and shorter lengths of treatment
(Hoberman, 1992). This relationship between
underutilization of mental health services and poverty
is especially significant for minority children and
families. Youths receiving community mental health
services supported by public agencies tend to be male,
poor, and referred by social agencies (Canino et al.,
1986; Costello & Janiszewski, 1990). Furthermore,
investigators have found this pattern particularly true
for African Americans as compared with Caucasians.
Hoberman (1992) has found that 90 percent of African
American youths entering the mental health systemlive
in poverty.

Culture and Utilization

Although it is clear that an insufficient number of
children receive mental health services, it is not clear
whether utilization of services varies by race or
ethnicity. The majority of studies have found that
African Americans tend to use some mental health
services, particularly inpatient care, more than would
be expected from their proportion in the population.
However, research findings are conflicting, probably
due to divergent methodological approaches (Attkisson
et al., 1995; McCabe et al., 1998; Quinn & Epstein,
1998). Furthermore, as Attkisson and colleagues (1995)
point out, consistent with the study by McCabe and
colleagues (1998), it is difficult to interpret these
findings in the absence of epidemiologic data on the
prevalence of a mental disorder in different racial and
ethnic groups. Recent reviews of epidemiological
findings concluded that present data are inadequate to
determine the relationship between race or ethnicity
and prevalence of a mental disorder (Friedman et al.,
1996b; Roberts et al., 1998).

The task of understanding treatment patterns is
made even more difficult because there are racial and
ethnic differences in family preferences and family-
initiated patterns of help-seeking (see also Culturally
Appropriate Social Support Services). For example,
parents from various cultural backgrounds have been
found to differ in the degree to which they identify

Children and Mental Health

child behavioral and emotional problems as disturbed
(Weisz & Weiss, 1991). Differences also have been
found across cultural groups in their beliefs about
whether these child problems are likely to improve in
the absence of professional support. Weisz and Weiss
(1991) have also identified cultural differences in the
power of various children's behavioral and emotional
problems to motivate a parent's search for professional
help.

Differences also arise indirectly from the
multiplicity of service systems with authority and
responsibility for protecting the well-being of children.
These systems have different `criteria for initiating
treatment and different patterns of utilization. African
American children and youth are considerably more
likely than those of other ethnic groups to enter the
child welfare system (National Research Council,
1993). Their greater chances of having parents
compelled to surrender them or of suffering abuse or
neglect lead them in greater numbers to be referred to
child welfare authorities, to be placed out-of-home, and
to be involved with the child welfare system longer.
Studies in one California county have found that
African American youths are overrepresented in
arrests, detention, and incarceration in the juvenile
justice system,  and in the schools they are
overrepresented in educational classes for the severely
emotionally disturbed. Hispanic/Latin0 children and
youths are no more likely than whites to come under
supervision of the child welfare system but, once
involved, remain longer. They are also more likely than
whites to be detained in juvenile justice facilities
(McCabe et al., 1998).

As a group, Hispanic/Latin0 and African American
children more often leave mental health services
prematurely than do Caucasian children (Sue et al.,
1991; Bui & Takeuchi, 1992; Takeuchi et al., 1993;
Viale-Val et al., 1984). Many factors contribute to
premature termination, such as insensitivity of mental
health providers to the culture of children and families
(Woodward et al., 1992). In general, even after
demonstrated success with middle-class Caucasians,
mental health treatments should not be applied without

181


Mental Health: A Report of the Surgeon General

culturally appropriate modification to people from
other cultures and races (Rosado & Elias, 1993).
Specialized programs and supports linked with the
culture of the community being served have been found
to be successful in promoting favorable patterns of
service utilization for all ages (Snowden & Hu, 1997).
It is becoming clear that the children and families
served by mental health programs designed to be linked
to community cultures are less ,likely to drop out of
treatment compared with similar families in mainstream
programs (Takeuchi et al., 1995). For example, Asian
American children at an Asian community- or culture-
focused program were found to use more services, drop
out less often, and improve more than did Asian
American children at mainstream programs (Yeh et al.,
1994).

In summarizing the relationship between race and
ethnicity, need for service, and use of service, Isaacs-
Shockley and colleagues (1996) raised the concern that
minority children are less likely to receive the care they
need than nonminority children-a concern that should
energize advocacy for the development of systems of
care tailored to the needs of distinct cultures (Cross et
al., 1989; Hemandez & Isaacs, 1998).

Service Systems and Financing
In the past, mental health services paid for by the
private sector were viewed as separate entities from
those funded by the public sector, particularly since the
public sector only paid for services that it itself
delivered. As this section explains below, the
distinction between public and private sectors has been
blurred by the advent of publicly supported payment
systems such as Medicaid and grants of public funds to
private organizations and providers. Now in the public
sector, services are paid for with governmental
resources but delivered either by public or private
organizations in institutional or community-based
settings.

Private Sector

The private sector uses a health insurance model that
reimburses for acute medical problems. Under this
traditional model, mental health coverage usually

entails outpatient counseling, medication treatments,
and short-term inpatient hospitalization. Under more
generous insurance plans, including some managed
care plans, intermediate services, such as crisis respite
and day hospitalization (also called partial
hospitalization or day treatment), are becoming more
popular although more traditional insurance plans
continue to restrict their use. The drive to reduce the
cost of inpatient care is sparking an expansion in the
range of services supported by the private sector.
When children and adolescents have complex and
long-term mental health problems, required services are
not usually covered by private sector insurance plans.
Families must either pay for the services themselves or
obtain the services through the public sector. In many
states, parents are forced to give up custody of their
children to the state child welfare system in order to
obtain needed residential services (Cohen et al., 1991).
This unfortunate choice results from a limited supply of
public sector services and special requirements for
gaining access to them.

Over the past decade, managed care has become a
major payer for private health care. Managed care
provision of mental health services emerged partially in
response to the overutilization of costly inpatient
hospitalization by adolescents in the 1980s (Lourie et
al., 1996). The purpose of managed care has been to
control spiraling mental health service costs, mostly by
limiting hospital stays and rigorously managing
outpatient service usage (Stroul et al., 1998). Managed
care can offer advantages in terms of cost-effective
services to meet the needs of children with flexible
benefits. It may also lead to denial of needed treatment.
While its potential negative effect on the efficacy of
mental health care delivered under its aegis is a hotly
debated issue, for the most part managed care furnishes
the same traditional services available under fee-for-
service insurance. The drive for efficiency, however,
has led to the introduction of intermediate services
designed to divert children from hospitalization.
Managed care has shortened hospital stays and
increased the use of short-term therapy models (Eisen
et al., 1995; Merrick, 1998). Managed care also has
lowered reimbursements for services provided by both

182


individual professionals and institutions. This has been
accompanied by the construction of provider networks,
under which professionals and institutions agree to
accept lower than customary fees as a tradeoff for
access to patients in the network.

Public Sector

Mental health services provided by the public sector are
more wide-ranging than those supported by the private
sector, and the types of payers are more diverse. Some
public agencies, such as Medicaid and state and local
departments of mental health, are mandated to support
mental health services. Others provide mental health
services to satisfy mandates in special education,
juvenile justice, andchild welfare, among others.
Medicaid is a major source of funding for mental
health and related support services. For the most part,
Medicaid has supported the traditional mix of
outpatient and inpatient services. However, unlike
private sector insurance, Medicaid also funds long-term
services for those children who need more intensive or
restrictive services, often through hospitalizations and
residential treatments. Some states cover in-home
services, school-based services, and case management
through a variety of Medicaid options. Medicaid also
supports the Early Periodic Screening, Diagnosis, and
Treatment (EPSDT) program.

without individualized wraparound provisions, early
intervention programs, crisis stabilization, in-home
therapy, and day programs. Since there has never been
a mandate to states to provide mental health services to
children and adolescents, the state or local support for
such services has been variable; Thus, one might find
a well-supported, innovative array of mental health
services for children in one state or community, and
almost no services in the next. The new State Child
Health Insurance Program (CHIP) is an attempt by
Congress to address the health care needs of low-
income, uninsured children. States have great flexibility
in their approach to coverage, and it remains to be seen
how they will deal with mental health services.
States and communities have sweeping mandates to
serve children and adolescents in schools and under
child welfare and juvenile service auspices. Many of
these state and community programs, however, lack the
expertise to recognize, refer, or treat mental health
problems that trigger mandated services, When they do
recognize problems, some of the needed mental health
services are paid for by Medicaid, by the federal
Maternal and Child Block Grant, or by a state or local
mental health authority; often, however, they are not.
Under these circumstances, the school, welfare, or
juvenile justice agency ends up paying the bill for the
mental health services.

Trapped between the private and public sectors is
a group of uninsured individuals and families who do
not qualify for the public sector programs, cannot
afford to pay for services themselves, and have no
access to private health insurance. The American
Academy of Pediatrics estimates that in 1999 there will
be 11 million uninsured children, about 3 million of
whom do not qualify for existing public programs
(American Academy of Pediatrics website
www.aap.org). State and local mental health authorities
fund some mental health services for these children,
often offered through the same community mental
health centers that are funded by Medicaid. Mental
health departments in some jurisdictions also fund a
broader array of mental health services than the
traditional acute service package. These "intermediate"
services include intensive case management with and

183

Children and Mental Health

Under the Federal special education law, the
Individuals with Disabilities Education Act" (IDEA;
see also New Roles for Families in Systems of Care),
school systems are mandated to provide special
education services to children and adolescents whose
disabilities interfere with their education, When these
disabilities take the form of serious emotional or
behavioral disturbances, school systems are required to
respond through assessment, counseling, behavior
management, and special classes or schools. When
school systems lack sufficient capacity to meet such
needs directly, school funds are used to send children
and youths to specialized private day schools or to
long-term residential schools, even if such schools are
out of the child's state or community. In this way,

" Public Law 94-142; Public Law 101-476; Public Law 10517.


Mental Health: A Report of the Surgeon General

school systems support an extensive array of mental
health services in the public and private sectors.

Preschool children with developmental and
emotional disabilities are covered by some state and
local legislation. Services for them also are mandated
under IDEA. Whereas some states coordinate this
education-based mandate through school systems,
others administer the preschool programs through
mental health or developmental disability agencies, an
interagency coordinating body, or other state agency.

Child welfare agencies in states and communities
also have powerful mandates to protect children and to
ensure that they receive the services they need;
including mental health services. Child welfare
agencies primarily serve poor children who are
separated from their parents because they are orphaned,
abandoned, abused, or neglected. Although many
mental health services are provided either under
Medicaid or through state and locally supported
community mental health centers, many are not and are
paid for directly by child welfare agencies. This
happens most often when children and adolescents have
severe, complicated conditions. As with education
agencies, when funding is not available through
Medicaid or other mental health funds, child'welfare
agencies directly pay for group home care, therapeutic
foster care, or residential treatment.

The same is true for juvenile justice agencies,
which have strong mandates to protect children and the
public. Many children and adolescents in the juvenile
justice system have serious mental health problems.
Beyond the more traditional "training schools" and
"detention centers," run by state and local juvenile
authorities, respectively, these agencies also purchase
care from the same group home, therapeutic foster care,
and residential providers as do child welfare agencies.

Children Served by the Public Sector
Children needing services are identified under the
auspices of five distinct types of service sectors:
schools, juvenile justice, child welfare, general health,
and mental health agencies. These agencies are mostly
publicly supported, each with different mandates to
serve various groups and to provide somewhat varied

levels of services. Many of these agencies arose
historically for another purpose, only to recognize later
that mental disorders cause, contribute to, or are effects
of the problem being addressed. In the past, these
sectors operated somewhat autonomously, with little
ongoing interaction. Catalyzed by the NMHA's
Invisible Children's Project (NMHA, 1987, 1993), the
combined impetus of Federal policies and managed
care more recently has begun to forge their integration.
Two recent review articles examined the
characteristics of children served in public systems.
Based on an appraisal of six prior studies, it was
concluded that, in addition to emotional and behavioral
functioning, these young people have problems in life
domains such as intellectual and educational
performance and social and adaptive behavior
(Friedman et al., 1996b). Frequently, such children and
their families have contact not only with the mental
health system, but also with special education, child
welfare, and juvenile justice (Landrum et al., 1995;
Duchnowski et al., 1998; Greenbaumet al., 1998; Quinn
& Epstein, 1998).

It is estimated that in a l-year period more than
700,000 children nationwide are in out-of-home
placements, mostly under the supervision of either the
child welfare or to some extent the juvenile justice
system (Glisson, 1996). Also, during the 1996-1997
school year more than 400,000 emotionally disturbed
children and youths between the ages of 6 and 2 1 were
served in the public schools nationwide (U.S.
Department of Education, 1997). This is just under
1 percent of the school enrollment for ages 6 to 17, and
8.5 percent of all children with disabilities receiving
any kind of special education service (Oswald &
Coutinho, 1995; U.S. Department of Education, 1997).
These figures and percentages have remained relatively
constant since national data were first collected about
20 years ago, although there are great variations
between states. For example, in 1992-1993,0.4 percent
of school-enrolled children in Mississippi were
identified as having a serious emotional disturbance
compared with 2.08 percent in Connecticut (Coker et
al., 1998).

184


  In addition to children with a serious emotional
disturbance served by the special education system,
children served by child welfare and juvenile justice
systems also have need for mental health services
(Friedman & Kutash, 1986; Cohen et al., 1990;
Greenbaumet al., 1991,1998; Otto et al., 1992; Glisson,
1996; Claussen et al., 1998), because they are much
more likely to have emotional and behavioral disorders
than is the general population (Duchnowski et al.,
1998; Quinn & Epstein, 1998). Thus, the emphasis on
interagency community-based systems of care is
warranted and essential (see Integrated SystemModel).

Managed Care in the Public Sector
Since 1992, managed care has begun to penetrate the
public sector (Essock & Goldman, 1995). The prime
impetus for this has been an attempt to control the costs
of Medicaid, in both the general health and mental
health arenas. Since Medicaid appears, on the surface,
to be similar to a private health insurance plan,
administrators of state Medicaid programs have
recently implemented managed care approaches and
structures to reduce health care costs. However,
Medicaid populations tend to have a higher prevalence
of children with serious emotional disturbance than that
seen in privately insured populations. Those children
generally need longer-term care (Friedman et al.,
1996b; Broskowski & Harshbarger, 1998). Managed
care strategies, which developed in the private sector,
are geared toward a relatively low utilization of mental
health services by a population whose mental health
needs tend to be short term and acute in nature. As a
result, the kinds of cost-cutting measures used by
managed care organizations, such as reduction of
hospital days and encouragement of short-term
outpatient therapies, have not worked as well in the
public sector with seriously emotionally disturbed
children as they have in the private sector (Stroul et al.,
1998).

Advocates express concern that the restrictions of
public managed care on mental health services shift
costs of diagnosis and treatment to other agencies, a
process known as cost-shifting. Under public managed
care, hospitalization for mental disorders is being

Children and Mental Health

substantially cut, with youths being discharged from
the hospital before adequate personal and/or
community safety plans can be instituted. Child welfare
and juvenile justice agencies have been compelled to
create and pay for services to support those children
who are no longer kept in hospitals. Thus, while
Medicaid's mental health costs may be decreasing in
such cases, there may be a substantial cost increase to
the other agencies involved, resulting in little if any
overall cost saving (Stroul et al., 1998).
Similarly, management of only the Medicaid
portion of a complex funding system that includes
Medicaid, mental health, special education, child
welfare, and juvenile justice funds not only creates the
cost-shifting described above, but also underestimates
the need to manage the funds spent by all agencies.
Demonstration programs of managed care strategies for
children and adolescents with severe emotional
disturbances have included the creation of an
interagency funding pool, shared by all affected
agencies, to meet the full range of needs of this
population. Under the demonstration program, the
funds in such a pool are capitated" to ensure that the
most appropriate services are purchased, regardless of
which agency's mandate they come under. In this way,
long-term, complex care can be offered in an efficient
way that reduces costs for all of the involved child and
youth agencies.

An excellent example of an approach in a managed
care setting is "Wraparound Milwaukee," one of the
Center for Mental Health Services' Comprehensive
Community Mental Health Services for Children and
Their Families Programs (Stroul et al., 1998; Goldman
& Faw, 1998). Wraparound Milwaukee, a coordinated
system of community-based care and resources for
families of children with severe emotional, behavioral,
and mental health problems, is operated by the Children
and Adolescent Services Branch of the Milwaukee
County Mental Health Division. The features of this
care management model are a provider network that
furnishes an array of mental health and child welfare
services; an individualized plan of care; a care

" Capitation: a fixed sum per individual per month.

185


Mental Health: A Report of the Surgeon General

coordinator management system to ensure that services
are coordinated, monitored, and evaluated; a Mobile
Urgent Treatment Team to provide crisis intervention
services;  a managed care approach including
preauthorization of services and service monitoring;
and a reinvestment strategy in which dollars saved from
decreased use of inpatient or residential care are
invested in increased service capacity.
Since its inception in 1994, one of the goals of the
program has been to blend funding streams.
Wraparound Milwaukee operates as a behavioral health
care "carve-out"" that blends funds from a monthly
capitation rate from Medicaid, a case rate from county
child welfare and juvenile justice funds, and a Center
for Mental Health Services child mental health services
grant. The Wraparound Milwaukee capitated rate of
approximately $4,300 covers all mental health and
substance abuse services,  including inpatient
hospitalization. Additional funds from child welfare
and/or juvenile justice are used for children with
serious emotional disturbances in the child welfare and
juvenile justice systems in Milwaukee County to cover
residential treatment, foster care, group home and
shelter care costs, and nontraditional mental health
community services (e.g., mentors, job coaches, after-
school programs). Wraparound Milwaukee is at "full
risk" for all services costs, meaning it is responsible for
charges in excess of the capitated rate. The average
monthly costs, including administrative costs, are
$3,400 per child. Medicaid-eligible children constituted
80 percent of the population served by the program in
1998.

Culturally Appropriate Social Support
Services

One of the fundamental requirements of culturally
appropriate services is for mental health providers to
identify and then to work in concert with natural
support systems within the diverse communities they
serve (Greenbaum, 1998). (Background information on
cultural diversity and culturally competent services is

I9 Carve-out: separation of funding for mental health services and
their management from those of general health.

186

provided in Chapter 2.)  If they are culturally
appropriate, services can transcend mental health's
focus on the "identified client" to embrace the
community, cultural, and family context of a client
(Szapocznik & Kurtines, 1993; Hemandez et al., 1998).
According to Greenbaum (1998), considering a client's
context is important because people who live close to
each other frequently have developed ways of coping
with similar personal problems. Becoming aware of
these natural systems and adapting formal services to
be congruent with them are ways to make services more
accessible and useful to diverse populations.

Community- and neighborhood-based social net-
works act as important resources for easing emotional
stress and for facilitating the process of seeking
professional help (Saunders, 1996). Often natural social
supports ameliorate emotional distress and have been
found to reduce the need for formal mental health
treatment (Linn & McGranahan, 1980; Birkel &
Reppucci, 1983; Cohen & Wills, 1985). According to
Saunders (1996), obtaining social support is not a
single event but rather an ongoing process. In general,
people use their neighborhood and familial supports
many times before they decide they have a problem and
determine what type of help they will seek (Rew et al.,
1997). A key to the success of mental health programs
is how well they use and are connected with
established, accepted, credible community supports.
The more this is the case, the less likely families view
such help as threatening and as carrying stigma; this is
particularly true for families who are members of racial
and ethnic minority groups (Bentelspacher et al., 1994).

Minority parents are more likely than nonminority
parents to seek input regarding their children from
family and community contacts (Briones et al., 1990;
Hoberman, 1992). In a study by McMiller and Weisz
(1996), two-thirds of the parents of minority children
did not seek help from professionals and agencies as
their first choice. For example, in Hispanic/Latin0
families, important decisions related to health and
mental health are often made by the entire family
network rather than by individuals (Council of
Scientific Affairs, 1991). According to Ruiz (1993),
health care settings that are not modified to work with


Hispanic/Latin0 family networks find that their clients
do not comply with medical advice; as a result, their
health status can be compromised.
In sum. mental health programs attempting to serve
diverse populations must incorporate an understanding
of culture, traditions, beliefs, and culture-specific
family interactions into their design (Dasen et al., 1988)
and form working partnerships with communities in
order to become successful (Kretzman & McKnight,
1993). Ultimately, the solution offered by professionals
and the process of problem resolution or treatment
should be consistent with, or at least tolerable to, the
natural supportive environments that reflect clients'
values and help-seeking behaviors (Lee, 1996).
Such partnerships sometimes fail, however,
because they concentrate on neighborhood and
community problems. According to Kretzman and
McKnight (1993), this approach often reinforces the
negative stereotypes of violent, drug- and gang-ridden,
and poverty-stricken communities. A more effective
alternative approach to working with communities is to
focus on community strengths (Kretzman & McKnight,
1993). This approach works best when community
residents themselves are interested in participating in
the partnership. Mental health providers who approach
minority communities in a paternalistic manner fail to
engage residents and fail to recognize whether the
community wants their assistance (Gutierrez-Mayka &
Contreras-Neira, 1998). Service providers who attend
to the wishes of community residents are more likely to
be respectful in their delivery of services, a respect that
is a prerequisite to cultural responsiveness and
competence in service planning and delivery to diverse
communities (Gutierrez-Mayka & Contreras-Neira,
1998).

Support and Assistance for Families
Any parent or guardian of a child with an emotional or
behavioral disorder can testify to the challenging,
sometimes overwhelming, task of caring for and raising
such a child. In the past, support from public agencies
has been inadequate and disjointed. Compounding the
problem was the view that parents were partly, if not
completely, to blame for their child's condition

Children and Mental Health

(Friesen 8z Stephens, 1998). In 1982, a particularly
incisive description of the problems faced by families
raising children with emotional or behavioral disorders
was published. It concluded that parents received little
assistance in finding services for their children and
.were either ignored or coerced by public agencies;
respite and support services to relieve the stress on
parents were unavailable; parents with children needing
residential care were compelled to give up custody to
get them placed; and few advocacy efforts were aimed
at relieving their problems (Knitzer, 1982).
Over the past two decad$s, however, recognition
and response to the plight of families have become
increasingly widespread. The role of families has been
redefined as that of a partner in care. Furthermore,
there was growing awareness of the difficulties families
faced because services are provided by so many
different public sources. In addition to problems with
coordination, parents and caregivers encountered
conflicting requirements, different atmospheres and
expectations, and contradictory messages from system
to system, office to office, and provider to provider
(Knitzer, 1982). Although some agencies began to
provide families with training, information, education,
and financial assistance, there was often a gap between
what families needed and what agencies provided.
Also, service agencies themselves began to recognize
that putting children into institutions may not have
served the child, the family, or the state and that
keeping a child with his or her family could reduce the
ever-growing costs of institutionalization (Stroul,
1993a, 1993b). Emerging awareness of these foregoing
problems galvanized advocacy for a better way to care
for children with emotional and behavioral disorders.
Reforms were instituted in many Federal programs, as
discussed later in this section.

According to Knitzer andcolleagues (1993), family
participation promotes four changes in the way children
are served: increased focus on families; provision of
services in natural settings; greater cultural sensitivity;
and a community-based system of care. Research is
accumulating that family participation improves the
process of delivering services and their outcomes. For
example, Koren and coworkers (1997) found that, for

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Mental Health: A Report of the Surgeon General

children with serious mental health problems, the more
the family participates in planning services, the better
family members feel their children's needs are being
met; participation in service planning also helps service
coordination. Curtis and Singh (1996) and Thompson
and colleagues (1997) also found that family
involvement in services was a determinant of the level
of parental empowerment, that is, how much control
parents felt they had over their children's treatment.

New Roles for Families in Systems of Care
Over the past two decades, the Federal government
established a series of initiatives to support families.
Parents were given progressively greater roles as
decisionmakers with the passage of the Education of
the Handicapped Act in 1975 and its successor
legislation, the Individuals with Disabilities Education
Acts of 1991 and 1997. For simplicity, these pieces of
legislation are collectively referred to hereinafter as the
IDEA Act. This act requires parent involvement in
decisions about educating children with disabilities. It
guarantees that all children with disabilities receive
free and appropriate public education. It also provides
funding assistance to states for implementation.
A novel approach taken by some community-level
systems of care to encouraging involvement of.families
is to train and hire family members into a wide range of
well-paying, career-ladder jobs as outreach workers,
service coordinators (sometimes called case managers),
and direct support services providers. These positions
are critical to achieving major program goals because
they make it possible for children and families to
remain together and to participate in the more clinical
components of their service plan. Family members are
also employed as supervisors of services, involved in
hiring staff, providing them with orientation and on-
the-job training (e.g., of case managers), overseeing
their work, and evaluating their performance. They also
participate in research.

Beginning in 1989, the Child and Adolescent
Service System Program, a component of the Center for
Mental Health Services, began providing some support
for statewide family organizations through a series of
funding and technical assistance mechanisms (Koroloff

et al., 1991; Briggs et al., 1994; also see Integrated
System Model). Such organizations were funded to
develop statewide networks of information and support
for families, to coordinate with other organizations that
shared common goals, and to promote needed changes.
Currently, Federal funding for 22 statewide family
organizations is provided through the Child and Family
Branch, Center for Mental Health Services, Substance
Abuse and Mental Health Services Administration.
Support and technical assistance to community-level
family organizations are also provided by the
Federation of Families for Children's Mental Health,
the National Alliance for the M&tally Ill, and other
family-run consumer organizations.

Family Support

Family support is defined here as the assistance given
to families to cope with the extra stresses that
accompany caring for a child with emotional
disabilities. In addition to the stress of raising a child
with an emotional disability, families often face other
difficulties such as poverty, joblessness, substance
abuse, and victimization. Family support often helps
keep families together by assisting them with the
practicalities of living and by attending to the needs of
all family members (Will, 1998). The main goal of
family support services is to strengthen adults in their
roles as parents, nurturers, and providers (Weissbourd
& Kagan, 1989). Too often, family support services are
not available within local communities.
Natural support systems are often diminished for
families of children with serious emotional, behavioral,
or physical disorders or handicaps because of the
stigma of, or embarrassment about, their child's
problems, or because caregivers have insufficient
energy to reach out to others. Not surprisingly, most
parents report that limited social support decreases
their quality of life (Crowley & Kazdin, 1998) and that
they feel less competent, more depressed, worried, and
tired and have more problems with spouses and other
family relationships than other parents (Farmer et al.,
1997). although a few families do feel enriched by
caring for these children (Yatchmenoff et al., 1998).

188


In a national survey of parents of children with an
emotional or behavioral disorder, 72 percent of
respondents indicated that emotional support
(irrespective of its form) was the most helpful aspect of
family support services (Friesen, 1990). Benefits
included increased access to information, improved
problem-solving skills, and more positive views about
parenting and their children's behavior (Friesen &
Koroloff, 1990).

Family support services occur in several forms:
assistance with daily tasks and psychosocial support
and counseling; informal or professional provision of
services; and practical support such as housing
assistance, food stamps, income support, or respite care
(i.e., temporary relief for family members caring for
individuals with disabilities).

Efforts to stop blaming parents for children's
problems have resulted in parents becoming viewed
less as patients than as partners, actively involved in
every phase of the treatment process (e.g., home-based
care, case management) and as a resource for their
children, as discussed above. For the self-help and
professionally led family support services described
subsequently, parents may function either as partners or
as providers. As "partners," parents act as a resource,
active contributor, or decisionmaker; as "providers,"
they are viewed as contributing to the welfare and
growth of other members of the family.

Results of research on the effectiveness of family
services are only beginning to appear, in the form of
some controlled studies and evaluations of support
services for families of children with emotional and
behavioral disorders (although there is a larger
literature on families whose children have other types
of disability and illness). Although this database on
family support programs is still limited, many positive
effects have been reported. The following paragraphs
cover family support groups as well as concrete
services. For the latter, only two types of interventions,
respite care and the family associate, are included.
Family therapy is covered in this chapter under
Outpatient Treatment. Furthermore, several forms of
parent training were found to be effective for individual

Children and Mental Health

diagnoses, such as conduct disorder (see section on
Selected Mental Disorders in Children).

Family Support Croups

The primary focus of family support groups is to
provide information and emotional support to members
&ho share a common problem or concern (e.g.,
disability, substance abuse, bereavement). Support
groups for families of children with emotional or
behavioral disorders are expanding. Although there is
a wide variation in membership, format, and duration
of these groups, most share some characteristics.
Usually, from 4 to 20 parents meet regularly to discuss
the problems and issues associated with parenting a
child with emotional and behavioral disorders and to
provide mutual encouragement and suggestions for
dealing with problematic situations. Support services
may be informal, organized, and parent led and are
often associated with organizations such as the
National Mental Health Association, Children and
Adults with Attention Deficit Disorders, the National
Alliance for the Mentally Ill, or the Federation of
Families for Children's Mental Health. Mental health
professionals may also participate in support groups
(Koroloff & Friesen, 1991).

It was found that support groups for parents of
children hospitalized with mental illness make parents
feel more positive about themselves and increase their
understanding of and communication with their
children (Dreier & Lewis, 1991). Participation in a six-
session education and support group for parents of
adolescents with schizophrenia led to increased
relaxation and concentration, less worry, changed
attitudes toward discipline, and greater ease in
discussing feelings. The support from parents in similar
situations was highly valued (Sheridan & Moore,
1991).

Another approach to support for parents of children
receiving mental health services is education:
knowledge of the services; skills needed to interact
with the system; and the caregivers' confidence in their
ability to collaborate with service providers (self-
efficacy). A training curriculum for parents was tested
in a randomized controlled trial involving more than

189


Mental Health: A Report of the Surgeon General

200 parents who either did or did not receive the
training curriculum. Three-month and 1 -year followup
results demonstrated significant improvement in
parents' knowledge and self-efficacy with the training
curriculum, whereas there was no effect on the mental
health status of their children, service use, or caregiver
involvement in treatment (Heflinger & Bickman, 1996;
Bickman et al., 1998).

Practical Support

Respite care is a type of concrete support that provides
temporary relief to family caregivers. An investigation
of the benefit of respite care is under way in New York
in families with children at risk of hospital placement.
When respite care was available, families preferred in-
home to out-of-home care. The younger the children,
the greater the child's functional impairment, and the
fewer the social supports (Boothroyd et al., 1998), the
more respite care was used. Outcomes have not yet
been reported.

Another form of concrete support is exemplified by
the Family Associate Intervention, which was
developed in Oregon. It appears to be an inexpensive
way to assist children in actually obtaining care after
they have been identified as needing care. The goal is
to use paraprofessionals (known as family associates),
rather than professionals, to facilitate entry into an
often intimidating service system. In a controlled study,
family associates were found to be effective in helping
families initiate mental health service use. Families
receiving this support service were more likely to make
and keep a first appointment at the mental health clinic.
The effectiveness of the intervention was moderate but
sufficient to encourage further development of such a
low-cost intervention (Koroloff et al., 1996b; Elliot et
al., 1998).

Integrated System Model

Within the public mental health system, the 1980s and
1990s have seen an increased emphasis on developing
interagency community-based systems of care (Stroul
& Friedman, 1986). This focus is driven by awareness
that a large number of children are served in systems
other than mental health, as well as by children's

complex and interrelated needs, as indicated earlier
(Friedman et al., 1996a, 1996b; Quinn & Epstein,
1998). In 1984, the Child and Adolescent Service
System Program (CASSP) was launched to respond to
the fragmentation of public services (Stroul &
Friedman, 1986). It was funded by the services
component of the National Institute of Mental Health,
which later became the Center for Mental Health
Services under the Alcohol and Drug Abuse and
Mental Health Administration Reorganization Act of
1992 (Public Law 102-321).

CASSP recognized the need for public sector
programs to become more integrated in their attempts
to meet more fully and efficiently the needs of children
and adolescents with a serious emotional disturbance
and their families. This Federal program pioneered the
concept of a "system of care" for this population, as
delineated by Stroul and Friedman (1986, 1996). A
system of care, described further below, is a
comprehensive approach to coordinating and delivering
a far-reaching array of services from multiple agencies.
All 50 states and numerous communities have received
CASSP grants to improve the organization of their
response to the mental health needs of the most
severely affected children and adolescents. Although
CASSP principles have become a standard for program
design, many communities do not offer comprehensive
services according to the CASSP model.

CASSP provided the conceptual framework for the
Robert Wood Johnson Foundation's Mental Health
Services Program for Youth and the Annie E. Casey
Foundation's Urban Mental Health Initiative. These
foundation programs were devoted to the development
of local interagency models (Cole, 1990). They were
followed in 1992 by the authorization for what was to
become the largest Federal program for child mental
health, the Comprehensive Community Mental Health
Services for Children and Their Families Program (also
known as the Children's Services Program), sponsored
by the Center for Mental Health Services (Public Law
102-321).

The Children's Services Program provides grants
to states, communities, territories, and Indian tribes and
tribal organizations to improve and expand systems of

190


cue to meet the needs of approximately 6.3 million
children and adolescents with serious emotional
disturbance and their families. The program now
s~pp~rts 45 sites across the country.
Built on the principles of CASSP, the Children's
Services Program promotes the development of service
delivery systems through a "system of care" approach.
The systemof care approach embraced by this initiative
is defined as a comprehensive spectrum of mental
health and other services and supports organized into a
coordinated network to meet the diverse and changing
needs of children and adolescents with serious
emotional disturbance and their families (Stroul &
Friedman, 1996). The system of care model is based on
three main elements: (1) the mental health service
system must be driven by the needs and the preferences
of the child and family; (2) the locus and management
of services must be within a muhiagency collaborative
environment, grounded in a strong community base;
and (3) the services offered, the agencies participating,
and the programs generated must be responsive to
children's different cultural backgrounds. The
Children's Services Program requires a national cross-
site evaluation,  which has been continuously
implemented since the spring of 1994. Preliminary
evidence from the uncontrolled evaluation indicates
some improvements in outcomes, such as fewer law
enforcement contacts and better school grades, living
arrangements, and mental health status. As part of the
evaluation, comparisons are being made between
system of care sites and comparable communities
without systems of care (Holden et al., 1999).

Effectiveness of Systems of Care

The previous sections have highlighted the trans-
formations that have taken place since the early 1980s
to create comprehensive, interagency, community-
based systems of care. This section reviews the
findings of research into the effectiveness of such
systems of care as compared with more traditional
systems.

Several studies on the effectiveness of systems of
care have been conducted in recent years (Stroul,
1993a, 1993b; Bruns et al., 1995; Rosenblatt, 1998).

Children and Mental Health

Although findings are encouraging, their effectiveness
has not yet been demonstrated conclusively, largely
because evaluation studies have not had a control
group. Most evaluations indicate that systems of care
reduce rates of reinstitutionalization after discharge
from residential settings, -reduce out-of-state place-
`ments of children, and improve other individual
outcomes such as number of behavior problems and
satisfaction with services. After reviewing findings
from the demonstration project of the Robert Wood
Johnson Foundation, their own work in Vermont,
research in California and. Alaska, and early findings
from the Fort Bragg evaluatidn, Bruns, Burchard, and
Yoe (1995) conclude that "initial findings are encourag-
ing, especially with the history of disappointing results
of outcome studies for child and adolescent services"
(p. 325). Details are available in the individual studies
(Attkisson et al., 1997; Illback et al., 1998; Santarcan-
gelo et al., 1998).

Reviews (Stroul, 1993a, 1993b; Rosenblatt, 1998) of
uncontrolled studies of community-based systems of
care showed that young people with serious emotional
disturbances who were served under community-based
systems of care consistently showed improvement
across a range of outcomes. However, most of these
studies used a so-called pre-post evaluation design that
does not answer the question of whether the changes
occurring over time (pre to post) are a consequence of
the intervention or of the passage of time itself. Indeed,
when comparison groups are studied, such as in the
Fort Bragg demonstration project, results tend to be
less favorable (see below).

The Fort Bragg Study

The Fort Bragg study, conducted by Bickman and his
colleagues (Bickman et al., 1995; Bickman, 1996a;
Hamner et al., 1997), merits detailed discussion
because of the basic issues it raises and the controversy
it engendered. The Fort Bragg study is an evaluation of
a large-scale system change project initiated by the
State of North Carolina and the Department of Defense
in the early 1990s; it was designed to determine what
systemic, clinical, and functional outcomes could be

191


Mental Health: A Report of the Surgeon General

achieved if a wide range of individualized and family-
centered services were provided without any barriers to
their availability. The project involved replacing the
traditional CHAMPUS benefit for children who were
military dependents in the Fort Bragg area with a
continuum of care that included a broad range of
services, a single point of entry, comprehensive
assessments, and no copayment. or benefit limit. The
provider agency at Fort Bragg was reimbursed for
costs. The impact of this change on children was
assessed by comparing outcomes at Fort Bragg with
those at two other military installations in the Southeast
where the traditional CHAMPUS benefit package
remained in effect. The comparison sites restricted
services to outpatient treatment, placement in a
residential treatment center, or treatment in an inpatient
hospital setting; regular copayment and benefit limits
were in effect at the comparison sites.
  Over a 3-year period, the evaluators collected
service use, cost, satisfaction, clinical, and functional
data for 984 young people served either at Fort Bragg
(574) or the comparison sites (410). Overall, there were
a number of favorable findings for the demonstration
site at Fort Bragg: access for children was increased;
children referred for services were indeed in need.of
help; parents and adolescents were more satisfied with
the services they received than were parents and
adolescents at the comparison sites; children received
services sooner; care was provided in less restrictive
environments; there was heavy use of intermediate-
level services; fewer clients received only one session
of outpatient treatment; overall, children stayed in
treatment longer (although the length of stay in
hospitals and residential treatment centers was shorter);
and there were fewer disruptions in services (Bickman,
1996a). Thus, the major findings were that the
expanded continuum of care resulted in greater access,
higher satisfaction with services by patients, and less
use of inpatient hospitalization and residential
treatment. Bickman also concluded, however, that
despite the fact that the intervention was well
implemented at Fort Bragg, there were no differences
between sites in clinical outcomes (emotional-

behavioral functioning), and the cost was considerably
greater at Fort Bragg.

The interpretation of the results by the project's
principal investigator has generated much discussion
and controversy in the children's mental health field,
both in support of and questioning the study's
conclusions (Friedman & Bums, 1996; Behar, 1997;
Feldman, 1997; Hoagwood, 1997; Laurie, 1997; Pires,
1997; Saxe & Cross, 1997; Se&rest,& Walsh, 1997;
Weisz et al., 1997). Most of the controversy surrounds
study interpretation, implementation, methodology, and
the interpretation of the cost data (Behar, 1997;
Feldman, 1997; Heflinger & Northrup, 1997;
Langmeyer, 1997). Furthermore, it has been pointed out
that Fort Bragg was not a multiagency community-
based system of care (Friedman & Burns, 1996), a
point that has been acknowledged by the principal
investigator of the study (Bickman, 1996b). Overall,
despite the controversy surrounding it, the Fort Bragg
evaluation has challenged the notion that changes at the
system level have consequences at the practice level
and, ultimately, improve outcomes for children and
families. The results have stimulated an increased focus
on practice-level issues.

The Stark County Study

The shift in focus to the practice level is being re-
inforced by results from another study by Bickman and
colleagues (1997, 1999) of children with emotional
disturbances who were served in Stark County, Ohio.
In this study, participating children were served within
the public mental health system by a multiagency
system of care; this was in contrast to the Fort Bragg
sample of military dependents seen in a mental health-
funded and -operated continuum of care. Children and
families who consented to participate in the study were
randomly assigned to one of two groups. The first
group was immediately eligible to receive services
within the existing community-based system of care in
Stark County. Families in the second group were
required to seek services on their own rather than to
receive them within the system of care. The major
differences in services provided were that significantly


more children and families in the system of care group
received case management and home visits than those
in the comparison group. Findings indicate no
differences in clinical or functional status 12 months
after intake. These results are similar to those of the
Fort Bragg study and suggest that attention should be
paid to the effectiveness of services delivered within
systems of care rather than only to the organization of
these systems.

Summary: Effectiveness of Systems of Care
Collectively, the results of the evaluations of systems
of care suggest that they are effective in achieving
important system improvements, such as reducing use
of residential placements, and out-of-state placements,
and in achieving improvements in functional behavior.
There also are indications that parents are more
satisfied in systems of care than in more traditional
service delivery systems. The effect of systems of care
on cost is not yet clear, however. Nor has it yet been
demonstrated that services delivered within a system of
care will result in better clinical outcomes than services
delivered within more traditional systems. There is
clearly a need for more attention to be paid to the
relationship between changes at the system level and
changes at the practice level.

Conclusions

1.









2.






3.

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.
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.
Approximately one in five children and adoles-
cents 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 im-
pairment."

4.

5.

6.

7.

8.

9.

Children and Mental Health

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.
Preventive interventions have been shown to be
effective in reducing the impact of risk factors for
mental disorders and improving social and
emotional development by providing, for example,
educational programs for young children, parent-
education programs, and nurse home visits.
A range of efficacious psychosocial and
pharmacologic treatments exists for many mental
disorders in children, including attention-
deficit/hyperactivity disorder, depression, and the
disruptive disorders.
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.
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.
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

193


Mental Health: A Report of the Surgeon General

services. Culturally appropriate services have been
designed but are not widely available.

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          CHAPTER 4
ADULTS AND MENTAL HEALTH

Contents

Chapter Overview  .............................................................. 225
  Mental Health in Adulthood  ................................................... 227
   PersonalityTraits  ......................................................... 227
      Self-Esteem  ......................................................... 228
      Neuroticism  ......................................................... 229

       Avoidance  .......................................................... 229
     Impulsivity  .......................................................... 229
     Sociopathy  .......................................................... 229
  Stressful Life Events ......................................................... 230
    Past Trauma and Child Sexual Abuse  ........................................ 23 1
    DomesticViolence...........: ........................................... 231
    Interventions for Stressful Life Events ........................................ 232
  Prevention of Mental Disorders  ................................................ 233

Anxiety Disorders  .............................................................. 233
Types of Anxiety Disorders  ................................................... 233
    Panic Attacks and Panic Disorder  ........................................... 233
   Agoraphobia ............................................................ 234
   SpecificPhobias   ........................................................ 235

    SocialPhobia  ........................................................... 235
   Generalized Anxiety Disorder   ............................................. 235
   Obsessive-Compulsive Disorder   ........................................... 236
    Acute and Post-Traumatic Stress Disorders .................................... 237
Etiology of Anxiety Disorders  ................................................. 237
   Acute Stress Response  .................................................... 238
   New Views About the Anatomical and Biochemical Basis of Anxiety ............... 239

    Neurotransmitter Alterations  ............................................... 240
   Psychological Views of Anxiety  ............................................ 240


Contents, continued

Treatment of Anxiety Disorders  ................................................ 241
CounselingandPsychotherapy .............................................. 241
Pharmacotherapy  ........................................................ 242
   Benzodiazepines ...................................................... 242
   Antidepressants  ................................................... o .. 242
   Buspirone  ........................................................... 243
Combinations of Psychotherapy and Pharmacotherapy  ........................... 243

MoodDisorders  ................................................................ 244
Complications and Comorbidities ............................................... 244
   Clinical Depression Versus Normal Sadness  ................................... 245
Assessment: Diagnosis and Syndrome Severity  .................................... 245
   Major Depressive Disorder ................................................. 246
   Dysthymia .............................................................. 246
   BipolarDisorder.. ....................................................... 246
   Cyclothymia  ............................................................ 251
   DifferentialDiagnosis ..................................................... 251
Etiology of Mood Disorders  ................................................... 25 1
   Biologic Factors in Depression .... .: ........................................ 251
   MonoamineHypothesis  ................................................... 252
   Evolving Views of Depression  .............................................. 252
   Anxiety and Depression  ................................................... 253
   Psychosocial and Genetic Factors in Depression  ................................ 254

    Stressful Life Events ...................................................... 254
   CognitiveFactors  ........................................................ 254
   Temperament and Personality  .............................................. 255

     Gender ................................................................. 255
   Genetic Factors in Depression and Bipolar Disorder ............................. 256

  TreatmentofMoodDisorders .................................................. 257
   StagesofTherapy  ........................................................ 257
     AcutePhaseTherapy  .................................................. 257
     Continuation Phase Therapy  ............................................ 261
     Maintenance Phase Therapies  ........................................... 26 1
  Specific Treatments for Episodes of Depression and Mania  .......................... 261


Contents, contjnued

Treatment of Major Depressive Episodes  ..................................... 262
Pharmacotherapies .................................................... 262
Alternate Pharmacotherapies ............................................. 263
Augmentation Strategies  ................................................ 265
Psychotherapy and Counseling .................................... . ..... 265
BipolarDepression  ............. . ..................................... 265
Pharmacotherapy, Psychosocial Therapy, and Multimodal Therapy   ............ 266
Preventing Relapse of Major Depressive Episodes ........................... 267
Treatment of Mania  ...................................................... 267
  AcutePhaseEfficacy .................................................. 267
Maintenance Treatment to Prevent Recurrences of Mania  ..................... 268
Service Delivery for Mood Disorders  ........................................ 269

Schizophrenia  ................................................................. 269

  Overview .................................................................. 269
   Cognitive Dysfunction   ................................................... 272
   FunctionalImpairment  ................................................... 272

    CulturalVariation  .......... . ............................................ 272

    Prevalence  ............................................................. 273
     Prevalence of Comorbid Medical Illness ................................... 273
CourseandRecovery  ........................................................ 274
   GenderandAgeatOnset  .................................................. 275
EtiologyofSchizophrenia  .................................................... 276

  Interventions ............................................................... 279
   Pharmacotherapy  ........................................................ 280
   Ethnopsychopharmacology  ................................................ 282
   PsychosocialTreatments  .................................................. 283
     Psychotherapy  ....................................................... 283
     FamilyInterventions  .................................................. 283
    Psychosocial Rehabilitation and Skills Development  ......................... 283
     Coping and Self-Monitoring  ............................................ 284

      Vocational Rehabilitation  .............................................. 285

ServiceDelivery  ............................................................... 285

CaseManagement  .......................................................... 286
Assertive Community Treatment  ............................................... 286
Psychosocial Rehabilitation Services  ........................................... 287
Inpatient Hospitalizatioh and Community Alternatives for Crisis Care .................. 287
Services for Substance Abuse and Severe Mental Illness  ............................ 288


Contents, continued

Other Services AndSupports.. .................................................... 289
Consumer Self-Help  ......................................................... 289
Consumer-Operated Programs  ................................................. 290
ConsumerAdvocacy  ......................................................... 291
Family Self-Help     ................................................. .' ....... 291
Family Advocacy.. .......................................................... 292

  HumanServices .............................................................. 292
   Housing ................................................................ 292
   Income, Education, and Employment ......................................... 293
   HealthCoverage  ......................................................... 294
Integrating Service Systems  .................................................... 295

Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 296

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 296


CHAPTER 4

A dulthood is a time for achieving productive
vocations and for sustaining close relationships at
home and in the community. These aspirations are
readily attainable for adults who are mentally healthy.
And they are within reach for adults who have mental
disorders, thanks to major strides in diagnosis,
treatment, and service delivery.

This chapter reviews the current state of knowledge
about mental health in adults, along with selected
mental disorders: anxiety disorders, mood disorders,
and schizophrenia. These disorders are highlighted
largely because of their prevalence in the population
and the burden of illness associated with each. The
chapter then turns to service delivery, describing the
effective organization and range of services for adults
with the most severe mental disorders. It also reviews
an array of other services and supports designed to
provide comprehensive care beyond `the formal
therapeutic setting.

Chapter Overview

Mental health in adulthood is characterized by the
successful performance of mental function, enabling
individuals to cope with adversity and to flourish in
their education, vocation, and personal relationships.
These are the areas of functioning most widely
recognized by the mental health field. Yet, from the
perspective of different cultures, these measures may
define the concept of mental health too narrowly. As
noted in Chapter 2, many groups, particularly ethnic
and racial minority group members, also emphasize
community, spiritual, and religious ties as necessary for
mental health. The mental health profession is
becoming more aware of the importance of reaching
out to other cultures;  an innovation termed
"linguistically and culturally competent services" is

ADUTS AND MENTAL HEALTH

pertinent both to the field's conception of mental health
and to the diagnosis and treatment of mental disorders.
An assortment of traits or personal characteristics
have been viewed as contributing to mental health,
including self-esteem, optimism, and resilience (Alloy
& Abramson, 1988; Seligman, 199 1; Institute of
Medicine [IOM], 1994; Beardslee & Vaillant, 1997).
These and related traits are seen as sources of personal
resilience needed to weather the storms of stressful life

events.

  Stressful life events in adulthood include the
breakup of intimate romantic relationships, death of a
family member or friend, economic hardship, role
conflict, work overload, racism and discrimination,
poor physical health, accidental injuries, and
intentional assaults on physical safety (Holmes & Rahe,
1967; Lazarus & Folkman, 1984; Kreiger et al., 1993).
Stressful life events in adulthood also may reflect past
events. Severe trauma in childhood, including sexual
and physical abuse, may persist as a stressor into
adulthood, or may make the individual more vulnerable
to ongoing stresses (Browne & Finkelhor, 1986).
Although some kinds of stressful life events are
encountered almost universally, certain demographic
groups have greater exposure and/or vulnerability to
their cumulative impact. These groups include women,
younger adults, unmarried adults, African Americans,
and individuals of lower socioeconomic status (Ulbrich
et al., 1989; McLeod & Kessler, 1990; Turner et al.,
1995; Miranda & Green, 1999).

Anxiety disorders are the most prevalent mental
disorders in adults (Regier et al., 1990). The anxiety
disorders affect twice as many women as men. A broad
category, anxiety disorders include panic disorder,
phobias, obsessive-compulsive disorder, post-traumatic
stress disorder, and generalized anxiety disorder,

225


Mental Health: A Report of the Surgeon General

among others. Underlying this heterogeneous group of
disorders is a state of heightened arousal or fear in
relation to stressful events or feelings. The biological
manifestations of anxiety, which are grounded in the
"fight-or-flight" response, are unmistakable: they
include surge in heart rate, sweating, and tensing of
muscles. But this is certainly not the whole picture.
Although the full array of biological causes and
correlates of anxiety are not yet in our grasp, numerous
effective treatments for anxiety disorders exist now.
Treatment draws on an assortment of psychosocial and
pharmacological approaches, administered alone or in
combination.

Mood disorders take a monumental toll in human
suffering, lost productivity, and suicide. Moreover,
when unrecognized, they can result in unnecessary
health care use. Mood disorders rank among the top 10
causes of worldwide disability (Murray & Lopez,
1996). Major depression and bipolar disorder are the
most familiar mood disorders, but there are others
including cyclothymia (alternating manic and
depressive states that, while protracted, do not meet
criteria for bipolar disorder) and dysthymia (a chronic,
albeit symptomatically milder formof depression). The
causes of mood disorders are not fully known. They
may be triggered by stressful life events and enduring
stressful social conditions (e.g., poverty and
discrimination). With the exception of bipolar disorder,
they too, like the anxiety disorders, are twice as
common in women as men. One subtype of mood
disorder, seasonal affective disorder, in which episodes
of depression tend to occur in the late fall and winter,
is seven times more common in women than in men
(Blumenthal, 1988). Many psychosocial and genetic
factors interact to dictate the appearance and persis-
tence of mood disorders, according to the biopsycho-
social model presented in Chapter 2.

Mood disorders, like anxiety disorders, can be
treated with a host of effective pharmacological and
psychosocial treatments. Either type of treatment is
effective for about 50 to 70 percent of patients in
outpatient settings (Depression Guideline Panel, 1993).
Severe depression seems to resolve more quickly with
pharmacotherapy (Depression Guideline Panel, 1993)

and may be helped further by multimodal therapy (the
combination of pharmacotherapy and psychotherapy)
(Thase et al., 1997b). Despite the efficacy of treatment,
a surprising fraction of those with mood disorders go
untreated (Katon et al., 1992; Narrow et al., 1993;
Wells et al., 1994; Thase, 1996). The foremost barriers
to treatment include cost, stigma, and problems in the
organization of service systems that contribute to the
underrecognition of these disorders.
Schizophrenia affects about 1 percent of the
population, yet its severity and petsistence reverberate
throughout the mental health service system
Schizophrenia is marked by profound alterations in
cognition and emotion. Symptoms frequently include
hearing internal voices or experiencing other sensations
not connected to an obvious source (hallucinations) and
assigning. unusual significance or meaning to normal
events or holding false personal beliefs (delusions).
The course of illness in schizophrenia is quite variable,
with most people having periods of exacerbation and
remission. Schizophrenia had once been thought to
have a uniformly downhill course, but recent research
dispels this view. Long-term followup studies show
that many individuals with schizophrenia significantly
improve and some recover (Ciompi, 1980; Harding et
al., 1992). Although the causes of schizophrenia are not
fully known, research points to the prominent role of
genetic factors and to the impact of adverse
environmental influences during early brain
development (Tsuang et al., 1991; Weinberger &
Lip&a, 1995; Andreasen, 1997b). New pharmaco-
logical treatments are at least as effective as past
pharmacological treatments with fewer troubling side
effects.

Effective treatment of schizophrenia extends well
beyond pharmacological therapy: it also includes
psychosocial interventions, family interventions, and
vocational and psychosocial rehabilitation. For those
patients who are high service users, treatment should be
coordinated by an interdisciplinary team that provides
high-intensity, community-based services (Lehman &
Steinwachs, 1998a). The prototype for this intensive
case-management approach, which is useful for persons
with other severe and persistent mental disorders as

226


Adults and Mental Health

w,ell. is assertive community treatment, described more
thoroughly later in this chapter. Among the services
included in this approach is substance abuse treatment.
Its inclusion stems from findings that about half of
patients with serious mental disorders (including
schizophrenia) develop alcohol or other drug abuse
problems (Drake & Osher, 1997). Even though research
generated a range of recommendations for effective
treatment of schizophrenia', it is alarming that less than
50 percent of patients actually receive many of the
recommended treatments and that the gap was more
pronounced in African Americans (Lehman &
Steinwachs, 1998b).

The social consequences of serious mental
disorders-family disruption, loss of employment and
housingdan be calamitous. Comprehensive treatment,
which includes services that exist outside the formal
treatment system, is crucial to ameliorate symptoms,
assist recovery, and, to the extent that these efforts are
successful,  redress stigma.  Consumer self-help
programs, family self-help, advocacy, and services for
housing and vocational assistance complement and
supplement the formal treatment system. Many of these
services are operated by consumers, that is, people who
use mental health services themselves.. The logic
behind their leadership in delivery of these services is
that consumers are thought to be capable of engaging
others with mental disorders, serving as role models,
and increasing the sensitivity of service systems to the
needs of people with mental disorders (Mowbray et al.,
1996).

Mental Health in Adulthood

What constitutes mental health during the adult years?
A widely used standard of mental health is the absence
of a defined mental disorder. This standard has its
limitations (discussed later), yet remains useful for
epidemiological purposes. Epidemiology studies
investigate the prevalence of mental disorders within
several time frames: current, the past 12 months, and
across a lifetime. Two well-designed national
epidemiologic surveys estimate that about 80percent of
the adult population of the United States do not have a
mental disorder during a year and hence may be

considered "mentally healthy" (i.e., absence of amental
disorder) during any given year (Regier et al., 1993;
Kessler et al., 1994). Thus, the popular notion that
everyone is "dysfunctional" is far from the truth
(Table 4-l). Yet, from time to time, many adults
experience mental health problems.
Defining mental health by the absence of mental
disorder does not convey the full picture of mental
health. Among its limitations, this definition excludes
adults with mental disorders who function well
between episodes of illness. These people often are
considered by themselves, and by coworkers, friends,
and families, to be "mentally healthy" in spite of a
history of mental illness and the risk of recurrence.
  In addition to the mental health criteria cited
earlier-that is, the successful performance of mental
function, enabling individuals to cope with adversity
and to flourish in their education, vocation, and
personal relationships-a complementary approach
defines the positive features of mental health in terms
of attaining developmental milestones of adulthood, or
in terms of displaying selected personality
characteristics, traits, or attributes. Developmental
theorist Erik Erikson viewed mental health in adulthood
as achieving developmental tasks or milestones.
According to Erikson's formulation and his subsequent
empirical research on adult men, adulthood was the
time for overcoming what he termed "psychosocial
crises," the resolution of which led to satisfactory
interpersonal and sexual relationships and to the pursuit
of broader concerns for society and future generations
(Erikson, 1963; Vaillant, 1977). However, these
milestones, and the developmental theories that
underpin them, have been criticized as reflecting the
norms of European males rather than of women and
other cultures.

Personality Traifs

Mental health and mental illness can be seen as the
product of various personality traits, behavior patterns,
and other characteristics which have roots in the
individual's prior life experiences or biology.

227


Mental Health: A Report of the Surgeon General

Table 4-1. Best estimate 1 -year prevalence based on ECA and NCS, ages 1 B-54

r
//

1

ECA Prevalence (%)     NCS Prevalence (%)

Best Estimate o * (%)

2ny Anxiety Disorder              13.1               18.7              16.4
    Simple Phobia             8.3               8.6              8.3
     Social Phobia             2.0               7.4               2.0
   Agoraphobia     ;:g              3.7              4.9
    GAD                                   3.4               3.4
     Panic Disorder             1.6
   OCD     t:::,*     g,*              1.6
                                                           2.4
    PTSD                                  3.6              3.6
                                         _. ._ ~ r.                     _:-c..       +- _.-a    _   ,_,
                                     Isi-/.. ,:                           i"i*9'1
                                             _*il ,_ "          : .,bAr'#e~uB&a-s. * *a_ ;&r~..s&.,,;' iis%
Any Mood Disorder               7.1               11.1              7.1
    MD Episode              6.5               10.1               6.5
    Unipolar MD              5.3               8.9              6.3
    Dysthymia               1.6               2.5             1.6
    Biopolar I                1.1               1.3               1.1
    Biopolar II                0.6               0.2               0.8

Schizophrenia                  1.3                   -
Nonaffective Psychosis                 -               0.2
Somatization                  0.2                   -
ASP                          2.1                    -
Anorexia Nervosa                0.1                    -
Severe Cognitive Impairment         1.2
                     i .~ /, . . I ." ^              - -9 %
       `- _*`_  j .-ah;- i--`*z         \ `:,.-.~I+
                         a i.iLJ&&iiC*+.J..~~~. ass   `-d&i*~ .d.&m5K- , 1
                                  ,w*~*~"~-pi~ `^.; s-   ,.. .  I-i;.hr ,-a .:.a& _

Any 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

Personality traits are thought to confer either beneficial
or detrimental effects on mental health during adult-
hood. Here too, however, there may be insufficient
attention to gender and culture. The culture-bound
nature of much of behavior has limited widespread
predictive validity of personality research (Mischel &
Shoda, 1968). With this caveat in mind, a brief
summary of healthy and maladaptive characteristics
follows.

Self-Esteem
Self-esteem refers to an abiding set of beliefs about
one's own worth, competence, and abilities to relate to
others (Vaughan & Oldham, 1997). Self-esteem also
has been conceptualized as buffering the individual
from adverse life events. Emotional well-being is often
associated with a slightly positive, yet realistic, outlook
(Alloy & Abramson, 1988). The opposite outlook is

228


characterized by pessimism, demoralization, or minor
5ymptoms of anxiety and depression. One seminal
aspect of self-esteem has garnered much research
attention: self-efficacy (Bandura, 1977). Self-efficacy
is defined as confidence in one's own abilities to cope
\vith adversity, either independently or by obtaining
appropriate assistance from others. Self-efficacy is a
major component of the construct known as resilience
t i.e.. the ability to withstand and overcome adversity).
Other components of resilience include intelligence and
problem solving, although resilience is also facilitated
by having adequate social support (Beardslee &
Vaillant. 1997).

Neuroticism

Neuroticism is a construct that refers to a broad pattern
of psychological, emotional, and psychophysiologic
reactivity (Eysenck & Eysenck,`1975). The opposite of
neuroticism is stability or equanimity, which are major
components of mental health. A high level of
neuroticism is associated with a predisposition toward
recognizing the dangerous, harmful, or defeating.
aspects of a situation and the tendency to respond with
worry, anticipatory anxiety, emotionality, pessimism,
and dissatisfaction. Neuroticism is associated with a
greater risk of early-onset depressive and anxiety
disorders (Clark et al., 1994). Neuroticism also may be
linked to a particular cognitive attributional style in
which life events are perceived to be large in impact
and more difficult to change (Alloy et al., 1984). For
example, this attributional style is embodied by
pessimists who see every setback or failure as lasting
forever, undermining everything, and being their fault
(Seligman, 1991). Neuroticism also is associated with
more rigid or distorted attitudes and beliefs about one's
competence (Beck, 1976).

Avoidance

Avoidance describes an exaggerated predisposition to
withdraw from novel situations and to avoid personal
challenges as threats. This is the behavioral state that
often accompanies the distress of someone who has a
high level of neuroticism and low self-efficacy
(Vaughan & Oldham, 1997). Closely related to the

Adults and Mental Health

characteristics of behavioral inhibition or introversion,
the trait of avoidance appears to be partly inherited and
is associated with shyness, anxiety, and depressive
disorders in both childhood and adult life, as well as the
subsequent development of substance abuse disorders
,(Vaughan & Oldham, 1997; Kagan et al., 1988). The
people with low levels of harm avoidance are described
as "healthy extroverts" and are characterized by
confident, carefree, or outgoing behaviors.

lmpulsivity

Impulsivity is a trait that is associated with poor
modulation of emotions, especially anger, difficulty
delaying gratification, and novelty seeking. There is
some developmental continuity between high levels of
impulsivity in childhood and several adult mental
disorders, including attention deficit hyperactivity
disorder, bipolar disorder, and substance abuse
disorders (Svrakic et al., 1993; Rothbart & Ahadi.
1994). Impulsivity also is associated with physical
abuse (both as victim and, subsequently, as perpetrator)
and antisocial personality traits (Vaughan & Oldham.
1997).

Sociopathy

This set of traits and behaviors refers to the
predisposition to engage in dishonest, hurtful,
unfaithful, and at times dangerous conduct to benefit
one's own ends. The opposite of sociopathy may be
referred to as character or scrupulosity. In its full form,
sociopathy is referred to as antisocial personality
disorder (DSM-IV). Sociopathy is characterized by a
tendency and ability to disregard laws and rules,
difficulties reciprocating within empathic and intimate
relationships, less internalization of moral standards
(i.e., a weaker conscience or superego), and an
insensitivity to the needs and rights of others. People
scoring high in sociopathy often have problems with
aggressivity and are overrepresented among criminal
populations. Although not invariably associated with
criminality, sociopathy is associated with problematic,
unethical, and morally questionable conduct in the
workplace and within social systems. Marked
sociopathy is much more common among men than

229


Mental Health: A Report of the Surgeon General

women, although several other disorders (borderline
and histrionic personality disorders and somatization
disorder) are overrepresented among women within the
same families (Widiger & Costa, 1994).

In summary, *the various traits and behavioral
patterns that epitomize strong mental health do not, of
course, exist in a vacuum: they develop in a social
context, and they underpin people's ability to handle
psychological and social adversity and the exposure to
stressful life events. Furthermore, as reviewed in
Chapter 3, severe or repeated trauma during youth may
have enduring effects on both neurobiological and
psychological development, altering stress responsivity
and adult behavior patterns. Perhaps the best
documented evidence of such enduring effects has been
shown in young adults who experienced severe sexual
or physical abuse in childhood. These individuals
experience a greatly increased risk bf mood, anxiety,
and personality disorders throughout adult life.

Stressful life Events

The most common psychological and social stressors in
adult life include the breakup of intimate romantic
relationships, death of a family member or friend,
economic hardships, racism and discrimination, poor
physical health, and accidental and intentional assaults
on physical safety (Holmes & Rahe, 1967; Lazarus &
Folkman, 1984; Kreiger et al., 1993). Although some
stressors are so powerful that they would evoke
significant emotional distress in most otherwise
mentally healthy people, the majority of stressful life
events do not invariably trigger mental disorders.
Rather, they are more likely to spawn mental disorders
in people who are vulnerable biologically, socially,
and/or psychologically (Lazarus & Folkman, 1984;
Brown & Harris, 1989; Kendler et al., 1995).
Understanding variability among individuals to a
stressful life event is a major challenge to research.
Groups at greater statistical risk include women, young
and unmarried people, African Americans, and
individuals with lower socioeconomic status
Wlbrich et al., 1989; McLeod & Kessler, 1990; Turner
et al., 1995; Miranda & Green, 1999).

Divorce is a common example. Approximately one-
half of all marriages now end in divorce, and about 30
to 40 percent of those undergoing divorce report a
significant increase in symptoms of depression and
anxiety (Brown & Harris, 1989). Vulnerability to
depression and anxiety is greater among those with a
personal history of mental disorders earlier in life and
is lessened by strong social support. For many, divorce
conveys additional economic adversities and the stress
of single parenting. Single mothers face twice the risk
of depression as do married mothers (Brown & Moran,
1997).

The death of a child or spoise during early or
midadult life is much less common than divorce but
generally is of greater potency in provoking emotional
distress (Kim & Jacobs, 1995). Rates of diagnosable
mental disorders during periods of grief are attenuated
by the convention not to diagnose depression during the
first 2 months of bereavement (Clayton & Darvish,
1979). In fact, people are generally unlikely to seek
professional treatment during bereavement unless the
severity of the emotional and behavioral disturbance is
incapacitating.

A majority of Americans never will confront the
stress of surviving a severe, life-threatening accident or
physical assault (e.g., mugging, robbery, rape);
however, some segments of the population, particularly
urban youths and young adults, have exposure rates as
high as 25 to 30 percent (Helzer et al., 1987; Breslau et
al., 199 1). Life-threatening trauma frequently provokes
emotional and behavioral reactions that jeopardize
mental health. In the most fully developed form, this
syndrome is called post-traumatic stress disorder
(DSM-N), which is described later in this chapter.
Women are twice as likely as men to develop post-
traumatic stress disorder following exposure to life-
threatening trauma (Breslau et al., 1998.)
More familiar to many Americans is the chronic
strain that poor physical health and relationship
problems place on day-to-day well-being. Relationship
problems include unsatisfactory intimate relationships;
conflicted relationships with parents, siblings, and
children; and "falling-out" with coworkers, friends, and

230


neighbors. In mid-adult life, the stress of caretaking for
elderly parents also becomes more common.
Relationship problems at least double the risk of
developing a mental disorder, although they are less
immediately threatening or potentially cataclysmic than
divorce or the death of a spouse or child (Brown 8z
Harris, 1989). Finally,.cumulative adversity appears to
be more potent than StreSSfUl events in isolation as a
predictor of psychological distress and mental disorders
(Turner & Lloyd, 1995).

fast Trauma and Child Sexual Abuse
Severe trauma in childhood may have enduring effects
into adulthood (Browne & Finkelhor, 1986). Past
trauma includes sexual and physical abuse, and parental
death, divorce, psychopathology, and substance abuse
(reviewed in Turner & Lloyd, 1995).
  Child sexual abuse is one of the most common
stressors, with effects that persist into adulthood. It
disproportionately affects females. Although
definitions are still evolving, child sexual abuse is often
defined as forcible touching of breasts or genitals or.
forcible intercourse (including anal, oral, or vaginal
sex) before the age of 16 or 18 (Goodman et al., 1997).
Epidemiology studies of adults in varying segments of
the community have found that 15 to 33 percent of
females and 13 to 16 percent of males were sexually
abused in childhood (Polusny & Follette, 1995). A
recent, large epidemiological study of adults in the
general community found a lower prevalence (12.8
percent for females and 4.3 percent for males);
however, the definition of sexual abuse was more
restricted than in past studies (MacMillan et al., 1997).
Sexual abuse in childhood has a mean age of onset
estimated at 7 to 9 years of age (Polusny & Follette,
1995). In over 25 percent of cases of child sexual
abuse, the offense was committed by a parent or parent
substitute (Sedlak & Broadhurst, 1996).
  The long-term consequences of past childhood
sexual abuse are profound, yet vary in expression. They
range from depression and anxiety to problems with
social functioning and adult interpersonal relationships
(Polusny & Follette, 1995). Post-traumatic stress
disorder is a common sequela, found in 33 to 86

Adults and Mental Health

percent of adult survivors of child sexual abuse
(Polusny & Follette, 1995). In a recent review, Weiss
et al. (1999) found that sexual abuse was a specific risk
factor for adult-onset depression and twice as many
women as men reported a history of abuse. Other long-
term effects include self-destructive behavior, social
isolation, poor sexual adjustment, substance abuse, and
increased risk of revictimization (Browne & Finkelhor,
1986; Briere, 1992).

Very few treatments specifically for adult survivors
of childhood abuse have been studied in randomized
controlled trials (IOM, 1998) Group therapy and
Interpersonal Transaction group therapy were found to
be more effective for female survivors than an
experimental control condition that offered a less
appropriate intervention (Alexander et al., 1989,199 1).
In the practice setting, most psychosocial and
pharmacological treatments are tailored to the primary
diagnosis, which, as noted above, varies widely and
may not attend to the special needs of those also
reporting abuse history.

Domestic Violence

Domestic violence is a serious and startlingly common
public health problem with mental health consequences
for victims, who are overwhelmingly female, and for
children who witness the violence. Domestic violence
(also known as intimate partner violence) features a
pattern of physical and sexual abuse, psychological
abuse with verbal intimidation, and/or social isolation
or deprivation. Estimates are that 8 to 17 percent of
women are victimized annually in the United States
(Wilt & Olsen, 1996). Pinpointing the prevalence is
hindered by variations in the way domestic violence is
defined and by problems in detection and
underreporting. Women are often fearful that their
reporting of domestic  violence will precipitate
retaliation by the batterer, a fear that is not unwarranted
(Sisley et al., 1999).

  Victims of domestic violence are at increased risk
for mental health problems and disorders as well as
physical injury and death. Domestic violence is
considered one of the foremost causes of serious injury
to women ages 15 to 44, accounting for about 30

231


Mental Health: A Report of the Surgeon General

percent of all acute injuries to women seen in
emergency departments (Wilt & Olsen, 1996).
According to the U.S. Department of Justice, females
were victims in about 75 percent of the almost 2,000
homicides between intimates in 1996 (cited in Sisley et
al., 1999). The mental healthconsequences of domestic
violence include depression, anxiety disorders (e.g.,
post-traumatic stress disorder), suicide, eating
disorders, and substance abuse (IOM, 1998; Eisenstat
& Bancroft, 1999). Children who witness domestic
violence may suffer acute and long-term emotional
disturbances,  including nightmares,  depression,
learning difficulties, and aggressive behavior. Children
also become at risk for subsequent use of violence
against their dating partners and wives (el-Bayoumi et
al., 1998; NRC, 1998; Sisley et al., 1999).
  Mental health interventions for victims, children,
and batterers are highly important. Individual
counseling and peer support groups are the
interventions most frequently used by battered women.
However, there is a lack of carefully controlled,
methodologically robust studies of interventions and
their outcomes, according to a report by the Institute of
Medicine and National Research Council (IOM, 1998).
A research agenda for violence against women was
developed (IOM, 1996) and has served as an impetus
for an ongoing research program sponsored by the U.S.
Departments of Justice and Health and Human
Services. Clearly, there is an urgent need for
development and rigorous evaluation of prevention
programs to safeguard against intimate partner violence
and its impact on children.

Interventions for Stressful Life Events

232

Stressful life events, even for those at the peak of
mental health, erode quality of life and place people at
risk for symptoms and signs of mental disorders. There
is an ever-expanding list of formal and informal
interventions to aid individuals coping with adversity.
Sources of informal interventions include family and
friends, education, community services, self-help
groups. social support networks, religious and spiritual
endeavors, complementary healers, and physical
activities. As valuable as these activities may be for

promoting mental health, they have received less
research attention than have interventions for mental
disorders. Nevertheless, there are selected interventions
to help people cope with stressors, such as bereavement
programs and programs for caregivers (see Chapter 5)
as well as couples therapy and physical activity.
Couples therapy is the umbrella term applied to
interventions that aid couples in distress. The best
studied interventions are behavioral couples therapy,
cognitive-behavioral couples therapy, and emotion-
focused couples therapy. A recent review. article
evaluated the body of evidence on the effectiveness of
couples therapy and programs ;o. prevent marital
discord (Christensen & Heavey, 1999). The review
found that about 65 percent of couples in therapy did
improve, whereas 35 percent of control couples also
improved. Couples therapy ameliorates relationship
distress and appears to alleviate depression. The gains
from couples therapy generally last through 6 months,
but there are few long-term assessments (Christensen &
Heavey, 1999). Similarly, interventions to prevent
marital discord yield short-term improvements in
marital adjustment and stability, but there is
insufficient study of long-term outcomes. The
prevention programs receiving the most study are the
Couple Communication Program, Relationship
Enhancement, and the Prevention and Relationship
Enhancement Program (Christensen & Heavey, 1999).
Greater research is needed to overcome gaps in
knowledge and to extend findings to a broader array of
programs, to diverse populations of couples, and to a
wider set of outcomes, including effects on children.
  Physical activities are a means to enhance somatic
health as well as to deal with stress. A recent Surgeon
General's Report on Physical Activity and Health
evaluated the evidence for physical activities serving to
enhance mental health (U.S. Department of Health and
Human Services [DHHS], 1996). Aerobic physical
activities, such as brisk walking and running, were
found to improve mental health for people who report
symptoms of anxiety and depression and for those who
are diagnosed with some forms of depression. The
mental health benefits of physical activity for
individuals in relatively good physical and mental


health were not as evident, but the studies did not have
sufficient rigor from which to draw unequivocal
conclusions (DHHS, 1996).

prevention of Mental Disorders
A promising development in prevention of a specific
mental disorder in adults occurred with the publication
of results from the San Francisco Depression Research
Project (Munoz et al., 1995). This study investigated
150 primary care patients who did not meet diagnostic
criteria for depression and who were being seen in a
public clinic for other problems. They were randomized
to either psychoeducation-an 8-week cognitive
behavioral course to help them control and manage
moods--or to a control condition, One year later, those
who received psychoeducation were found to have
developed significantly fewer depression symptoms
than members of the control group. This trial is
noteworthy in two major respects: it was a randomized
controlled trial and its participants were low-income
individuals, with high representation of all major
minority groups. Low-income individuals are
considered a high-risk population because of studies
documenting their higher prevalence of mental
disorders.  This study demonstrated in a
methodologically rigorous fashion that depression may
be preventable in some cases. It serves as a model for
extending the concept of prevention to many mental
disorders. Prevention research is vitally important and
needs to be enhanced.

and without a history of panic disorder), generalized
anxiety disorder, specific phobia, social phobia,
obsessive-compulsive disorder, acute stress disorder,
and post-traumatic stress disorder (DSM-IV). In
addition, there are adjustment disorders with anxious
features, anxiety disorders due to general medical
conditions, substance-induced anxiety disorders, and
the residual category of anxiety disorder not otherwise
specified (DSM-IV).

Anxiety Disorders

233

The anxiety disorders are the most common, or
frequently occurring, mental disorders. They
encompass a group of conditions that share extreme or
pathological anxiety as the principal disturbance of
mood or emotional tone. Anxiety, which may be
understood as the pathological counterpart of normal
fear, is manifest by disturbances of mood, as well as of
thinking, behavior, and physiological activity.

Types of Anxiety Disorders
The anxiety disorders include panic disorder (with and
without a history of agoraphobia), agoraphobia (with

Adults and Mental Health

Anxiety disorders not only are common in the
United States, but they are ubiquitous across human
cultures (Regier et al., 1993; Kessler et al., 1994;
Weissman et al., 1997). In the United States, l-year
prevalence for all anxiety disorders among adults ages
18 to 54 exceeds 16 percent (Table 4-l), and there is
significant overlap or comorbidity with mood and
substance abuse disorders (Regier et al.,  1990;
Goldberg & Lecrubier, 1995; Magee et al., 1996). The
longitudinal course of these disorders is characterized
by relatively early ages of onset, chronicity, relapsing
or recurrent episodes of illness, and periods of
disability (Keller & Hanks, 1994; Gorman & Coplan,
1996; Liebowitz, 1997; Marcus et al., 1997). Although
few psychological autopsy studies of adult suicides
have included a focus on comorbid conditions (Conwell
& Brent, 1995), it is likely that the rate of comorbid
anxiety in suicide is underestimated. Panic disorder and
agoraphobia, particularly, are associated with increased
risks of attempted suicide (Homig & McNally, 1995;
American Psychiatric Association, 1998).

Panic Attacks and Panic Disorder

A panic attack is a discrete period of intense fear or
discomfort that is associated with numerous somatic
and cognitive symptoms (DSM-IV). These symptoms
include palpitations, sweating, trembling, shortness of
breath, sensations of choking or smothering, chest pain,
nausea or gastrointestinal distress, dizziness or
lightheadedness, tingling sensations, and chills or
blushing and "hot flashes." The attack typically has an
abrupt onset, building to maximum intensity within 10
to 15 minutes. Most people report a fear of dying,
"going crazy," or losing control of emotions or
behavior. The experiences generally provoke a strong


Mental Health: A Report of the Surgeon General

urge to escape or flee the place where the attack begins
and, when associated with chest pain or shortness of
breath, frequently results in seeking aid from a hospital
emergency room or other type of urgent assistance. Yet
an attack rarely lasts longer than 30 minutes. Current
diagnostic practice specifies that a panic attack must be
characterized by at least four of the associated somatic
and cognitive symptoms described above. The panic
attack is distinguished from other forms of anxiety by
its intensity and its sudden, episodic nature. Panic
attacks may be further characterized by the relationship
between the onset of the attack and the presence or
absence of situational factors. For example, a panic
attack may be described as unexpected, situationally
bound, or situationally predisposed (usually, but not
invariably occurring in a particular situation). There are
also attenuated or "limited symptom" forms of panic
attacks.

Panic attacks are not always indicative of a mental
disorder, and up to 10 percent of otherwise healthy
people experience an isolated panic attack per year
(Barlow, 1988; Klerman et al., 1991). Panic attacks
also are not limited to panic disorder. They commonly
occur in the course of social phobia, generalized
anxiety disorder, and major depressive disorder
(DSM-IV).

Panic disorder is diagnosed when a person has
experienced at least two unexpected panic attacks and
develops persistent concern or worry about having
further attacks or changes his or her behavior to avoid
or minimize such attacks. Whereas the number and
severity of the attacks varies widely, the concern and
avoidance behavior are essential features. The
diagnosis is inapplicable when the attacks are presumed
to be caused by a drug or medication or a general
medical disorder, such as hyperthyroidism.
Lifetime rates of panic disorder of 2 to 4 percent
and l-year rates of about 2 percent are documented
consistently in epidemiological studies (Kessler et al.,
1994; Weissman et al., 1997) (Table 4-l). Panic
disorder is frequently complicated by major depressive
disorder (50 to 65 percent lifetime comorbidity rates)
and alcoholism and substance abuse disorders (20 to 30
`percent comorbidity) (Keller&Hanks, 1994; Magee et

al., 1996; Liebowitz, 1997). Panic disorder is also
concomitantly diagnosed, or co-occurs, with other
specific anxiety disorders, including social phobia (up
to 30 percent), generalized anxiety disorder (up to 25
percent), specific phobia (up to 20 percent), and
obsessive-compulsive disorder (up to 10 percent)
(DSM-IV). As discussed subsequently, approximately
one-half of people with panic disorder at some point
develop such severe avoidance as to warrant a separate
description, panic disorder with agoraphobia.
Panic disorder is about twice as common among
women as men (American Psychiatric Association,
1998). Age of onset is most common between late
adolescence and midadult life, with onset relatively
uncommon past age 50. There is developmental
continuity between the anxiety syndromes of youth,
such as separation anxiety disorder. Typically, an early
age of onset of panic disorder carries greater risks of
comorbidity, chronicity, and impairment. Panic
disorder is a familial condition and can be
distinguished from depressive disorders by family
studies (Rush et al., 1998).

Agoraphobia

The ancient term agoraphobia is translated from Greek
as fear of an open marketplace. Agoraphobia today
describes severe and pervasive anxiety about being in
situations from which escape might be difficult or
avoidance of situations such as being alone outside of
the home, traveling in a car, bus, or airplane, or being
in a crowded area (DSM-TV).

Most people who present to mental health
specialists develop agoraphobia after the onset of panic
disorder (American Psychiatric Association, 1998).
Agoraphobia is best understood as an adverse
behavioral outcome of repeated panic attacks and the
subsequent worry, preoccupation, and avoidance
(Barlow, 1988). Thus, the formal diagnosis of panic
disorder with agoraphobia was established. However,
for those people in communities or clinical settings
who do not meet full criteria for panic disorder, the
formal diagnosis of agoraphobia without history of
panic disorder is used (DSM-IV).

234


The l-year prevalence of agoraphobia is about 5
percent (Table 4-l). Agoraphobia occurs about two
times more commonly among women than men (Magee
et al., 1996). The gender difference may be attributable
to social-cultural factors that encourage, or permit, the
greater expression of avoidant coping strategies by
women (DSM-IV), although other explanations are
possible.

Specific Phobias

These common conditions are characterized by marked
fear of specific objects or situations (DSM-IV).
Exposure to the object of the phobia, either in real life
or via imagination or video, invariably elicits intense
anxiety, which may include a (situationally bound)
panic attack. Adults generally recognize that this
intense fear is irrational. Nevertheless, they typically
avoid the phobic stimulus or endure exposure with
great difficulty. The most common specific phobias
include the following feared stimuli or situations:
animals (especially snakes, rodents, birds, and dogsj;
insects (especially spiders and bees or hornets);
heights; elevators; flying; automobile driving; water;
storms; and blood or injections.

Approximately 8 percent of the adult population
suffers from one or more specific phobias in 1 year
(Table 4-l). Much higher rates would be recorded if
less rigorous diagnostic requirements for avoidance or
functional impairment were employed. Typically, the
specific phobias begin in childhood, although there is
a second "peak" of onset in the middle 20s of
adulthood (DSM-IV). Most phobias persist for years or
even decades, and relatively few remit spontaneously
or without treatment.

The specific phobias generally do not result from
exposure to a single traumatic event (i.e., being bitten
by a dog or nearly drowning) (Marks, 1969). Rather,
there is evidence of phobia in other family members
and social or vicarious learning of phobias (Cook &
Mineka, 1989). Spontaneous, unexpected panic attacks
also appear to play a role in the development of specific
phobia, although the particular pattern of avoidance is
much more focal and circumscribed.

Adults and Mental Health

Social Phobia

Social phobia, also known as social anxiety disorder,
describes people with marked and persistent anxiety in
social situations, including performances and public
speaking (Ballenger et al., 1998). The critical element
of the fearfulness is the possibiIity of embarrassment or
ridicule. Like specific phobias, the fear is recognized
by adults as excessive or unreasonable, but the dreaded
social situation is avoided or is tolerated with great
discomfort. Many people with social phobia are
preoccupied with concerns that others will see their
anxiety symptoms (i.e., trembling, sweating, or
blushing); or notice their halting or rapid speech; or
judge them to be weak, stupid, or "crazy." Fears of
fainting, losing control of bowel or bladder function, or
having one's mind going blank are also not uncommon.
Social phobias generally are associated with significant
anticipatory anxiety for days or weeks before the
dreaded event, which in turn may further handicap
performance and heighten embarrassment.
  The l-year prevalence of social phobia ranges
from 2 to 7 percent (Table 4-l), although the lower
figure probably better captures the number of people
who experience significant impairment and distress.
Social phobia is more common in women (Wells et al.,
1994). Social phobia typically begins in childhood or
adolescence and, for many, it is associated with the
traits of shyness and social inhibition (Kagan et al.,
1988). A public humiliation, severe embarrassment, or
other stressful experience  may provoke an
intensification of difficulties (Barlow, 1988). Once the
disorder is established, complete remissions are
uncommon without treatment. More commonly, the
severity of symptoms and impairments tends to
fluctuate in relation to vocational demands and the
stability of social relationships. Preliminary data
suggest social phobia to be familial (Rush et al., 1998).

Generalized Anxiety Disorder
Generalized anxiety disorder is defined by a protracted
(16 months' duration) period of anxiety and worry,
accompanied by multiple associated symptoms (DSM-
IV). These symptoms include muscle tension, easy
fatiguability, poor concentration, insomnia, and

235


Mental Health: A Report of the Surgeon General

irritability. In youth, the condition is known as
overanxious disorder of childhood. In DSM-IV, an
essential feature of generalized anxiety disorder is that
the anxiety and worry cannot be attributable to the
more focal distress of panic disorder, social phobia,
obsessive-compulsive disorder, or other conditions.
Rather, as implied by the name, the excessive worries
often pertain to many areas, including work,
relationships, finances, the well-being of one's family,
potential misfortunes, and impending deadlines.
Somatic anxiety symptoms are common, as are
sporadic panic attacks.

Generalized anxiety disorder occurs more often in
women, with a sex ratio of about 2 women to 1 man
(Brawman-Mintzer & Lydiard, 1996). The l-year
population prevalence is about 3 percent (Table 4-l).
Approximately 50 percent of cases begin in childhood
or adolescence. The disorder typically runs a
fluctuating course, with periods of increased symptoms
usually associated with life stress or impending
difficulties. There does not appear to be a specific
familial association for general anxiety disorder,
Rather, rates of other mood and anxiety disorders
typically are greater among first-degree relatives of
people with generalized anxiety disorder (Kendler et
al., 1987).

Obsessive-Compulsive Disorder

Obsessions are recurrent, intrusive thoughts, impulses,
or images that are perceived as inappropriate,
grotesque, or forbidden (DSM-IV). The obsessions,
which elicit anxiety and marked distress, are termed
"ego-alien" or "ego-dystonic" because their content is
quite unlike the thoughts that the person usually has.
Obsessions are perceived as uncontrollable, and the
sufferer often fears that he or she will lose control and
act upon such thoughts or impulses. Common themes
include contamination with germs or body fluids,
doubts (i.e., the worry that something important has
been overlooked or that the sufferer has unknowingly
inflicted harm on someone), order or symmetry, or loss
of control of violent or sexual impulses.

Compulsions are repetitive behaviors or mental acts
that reduce the anxiety that accompanies an obsession
or "prevent" some dreaded event from happening
(DSM-IV). Compulsions include both overt behaviors,
such as hand washing or checking, and mental acts
including counting or praying. Not uncommonly,
compulsive rituals take up long periods of time, even
hours, to complete. For example, repeated hand
washing,  intended to remedy anxiety about
contamination,  is a common cause of contact
dermatitis.

Although once thought to be rare, obsessive-
compulsive disorder has now been documented to have
a l-year prevalence of 2.4 percent (Table 4-l).
Obsessive-compulsive disorder is equally common
among men and women.

Obsessive-compulsive disorder typically begins in
adolescence to young adult life (males) or in young
adult life (females) (Burke et al., 1990; DSM-IV). For
most, the course is fluctuating and, like generalized
anxiety. disorder, symptom exacerbations are usually
associated with life stress. Common comorbidities
include major depressive disorder and other anxiety
disorders. Approximately 20 to 30 percent of people in
clinical samples with obsessive-compulsive disorder
report a past history of tics, and about one-quarter of
these people meet the full criteria for Tourette's
disorder (DSM-IV). Conversely, up to 50 percent of
people with Tourette's disorder develop obsessive-
compulsive disorder (Pitman et al., 1987).
Obsessive-compulsive disorder has a clear familial
pattern and somewhat greater familial specificity than
most other anxiety disorders. Furthermore, there is an
increased risk of obsessive-compulsive disorder among
first-degree relatives with Tourette's disorder. Other
mental disorders that may fall within the spectrum of
obsessive-compulsive disorder include trichotillomania
(compulsive hair pulling), compulsive shoplifting,
gambling, and sexual behavior disorders (Hollander,
1996). The latter conditions are somewhat discrepant
because the compulsive behaviors are less ritualistic
and yield some outcomes that are pleasurable or

236


gratifying. Body dysmorphic disorder is a more
circumscribed condition in which the compulsive and
obsessive behavior centers around a preoccupation with
one's appearance (i.e., the syndrome of imagined
ugliness) (Phillips, 199 1).

Acute and Post-Traumatic Stress Disorders
Acute stress disorder refers to the anxiety and
behavioral disturbances that develop within the first
month after exposure to an extreme trauma. Generally,
the symptoms of an acute stress disorder begin during
or shortly following the trauma. Such extreme
traumatic events include rape or other severe physical
assault, near-death experiences in accidents, witnessing
a murder, and combat. The symptom of dissociation,
which reflects a perceived detachment of the mind from
the emotional state or even the body, is a critical
feature. Dissociation also is characterized by a sense of
the world as a dreamlike or unreal place and may be
accompanied by poor memory of the specific events,
which in severe form is known as dissociative amnesia.
Other features of an acute stress disorder include
symptoms of generalized anxiety and hyperarousal,
avoidance of situations or stimuli that elicit memories
of the trauma, and persistent, intrusive recollections of
the event via flashbacks, dreams, or recurrent thoughts
or visual images.

If the symptoms and behavioral disturbances of the
acute stress disorder persist for more than 1 month, and
if these features are associated with functional
impairment or significant distress to the sufferer, the
diagnosis is changed to post-traumatic stress disorder.
Post-traumatic stress disorder is further defined in
DSM-IV as having three subforms: acute' (< 3 months'
duration), chronic (2 3 months' duration), and delayed
onset (symptoms began at least 6 months after exposure
to the trauma).

By virtue of the more sustained nature of post-

' The acute subform of post-traumatic stress disorder is distinct
from acute stress.disorder because the latter resolves by the end
of the first month, whereas the former persists until 3 months.
If the condition persists after 3 months duration, the diagnosis is
again changed to the chronic post-traumatic stress disorder
subform (DSM-IV).

Adults and Mental Health

traumatic stress disorder (relative to acute stress
disorder), a number of changes, including decreased
self-esteem, loss of sustained beliefs about people or
society, hopelessness, a sense of being permanently
damaged, and difficulties in. previously established
relationships, are typically observed. Substance abuse
often develops, especially involving alcohol, marijuana,
and sedative-hypnotic drugs.

About 50 percent of cases of post-traumatic stress
disorder remit within 6 months. For the remainder, the
disorder typically persists for years and can dominate
the sufferer's life. A longitu'dinal study of Vietnam
veterans, for example, found 15 percent of veterans to
be suffering from post-traumatic stress disorder 19
years after combat exposure (cited in McFarlane &
Yehuda, 1996). In the general population, the l-year
prevalence is about 3.6 percent, with women having
almost twice the prevalence of men (Kessler et al.,
1995) (Table 4- 1). The highest rates of post-traumatic
stress disorder are found among women who are
victims of crime, especially rape, as well as among
torture and concentration camp survivors (Yehuda,
1999). Overall, among those exposed to extreme
trauma, about 9 percent develop post-traumatic stress
disorder (Breslau et al., 1998).

Etiology of Anxiety Disorders
The etiology of most anxiety disorders, although not
fully understood, has come into sharper focus in the last
decade. In broad terms, the likelihood of developing
anxiety involves a combination of life experiences,
psychological traits, and/or genetic factors. The anxiety
disorders are so heterogeneous that the relative roles of
these factors are likely to differ. Some anxiety dis-
orders, like panic disorder, appear to have a stronger
genetic basis than others (National Institute of Mental
Health [NIMH], 1998), although actual genes have not
been identified. Other anxiety disorders are more
rooted in stressful life events.

It is not clear why females have higher rates than
males of most anxiety disorders, although some
theories have suggested a role for the gonadal steroids.
Other research on women's responses to stress also
suggests that women experience a wider range of life

237


Mental Health: A Report of the Surgeon General

events (e.g., those happening to friends) as stressful as
compared with men who react to a more limited range
of stressful events, specifically those affecting
themselves or close family members (Maciejewski et
al., 1999).

What the myriad of anxiety disorders have in
common is a state of increased arousal or fear (Barbee,
1998). Anxiety disorders often are conceptualized as an
abnormal or exaggerated version of arousal. Much is
known about arousal because of decades of study in
animals" and humans of the so-called "fight-or-flight
response," which also is referred to as the acute stress
response. The acute stress response is critical to
understanding the normal response to stressors and has
galvanized research,  but its limitations for
understanding anxiety have come to the forefront in
recent years, as this section later explains.
In common parlance, the term "stress" refers either
to the external stressor, which can be physical or
psychosocial in nature, as well as to the internal
response to the stressor. Yet researchers distinguish the
two, calling the stressor the stimulus and the body's
reaction the stress response. This is an important
distinction because in many anxiety states there is no
immediate external stressor. The following paragraphs
describe the biology of the acute stress response, as
well as its limitations, in understanding human anxiety.
Emerging views about the neurobiology of anxiety
attempt to integrate and understand psychosocial views
of anxiety and behavior in relation to the structure and
function of the central and peripheral nervous system.

Acute Stress Response

When a fearful or threatening event is perceived,
humans react innately to survive: they either are ready
for battle or run away (hence the term "fight-or-flight
response"). The nature of the acute stress response is
all too familiar. Its hallmarks are an almost
instantaneous surge in heart rate, blood pressure,
sweating, breathing, and metabolism, and a tensing of

2 Anxiety is one of the few mental disorders for which animal
models have beendeveloped. Researchers can reproduce some
of the symptoms of human anxiety in animals by introducing
`different types of stressors, either physical or psychosocial.

muscles. Enhanced cardiac output and accelerated
metabolism are essential for mobilizing fast action. The
host of physiological changes activated by a stressful
event are unleashed in part by activation of a nucleus in
the brain stem called the locus ceruleus. This nucleus
is the origin of most norepinephrine pathways in the
brain. Neurons using norepinephrine as their
neurotransmitter project bilaterally from the locus
ceruleus along distinct pathways to the cerebral cortex,
limbic system, and the spinal cord, among other
projections.

Normally, when someone is i? a serene, unstim-
ulated state, the "firing" of neurons in the locus
ceruleus is minimal. A novel stimulus, once perceived,
is relayed from the sensory cortex of the brain through
the thalamus to the brain stem. That route of signaling
increases the rate of noradrenergic activity in the locus
ceruleus, and the person becomes alert and attentive to
the environment. If the stimulus is perceived as a threat,
a more intense and prolonged discharge of the locus
ceruleus activates the sympathetic division of the
autonomic nervous system (Thase & Howland, 1995).
The activation of the sympathetic nervous system leads
to the release of norepinephrine from nerve endings
acting on the heart, blood vessels, respiratory centers,
and other sites. The ensuing physiological changes
constitute a major part of the acute stress response. The
other major player in the acute stress response is the
hypothalamic-pituitary-adrenal axis, which is discussed
in the next section.

In the 198Os, the prevailing view was that excess
discharge of the locus ceruleus with the acute stress
response was a major contributor to the etiology of
anxiety (Coplan & Lydiard, 1998). Yet over the past
decade, the limitations of the acute stress response as a
model for understanding anxiety have become more
apparent. The first and most obvious limitation is that
the acute stress response relates to arousal rather than
anxiety. Anxiety differs from arousal in several ways
(Barlow, 1988; Nutt et al., 1998). First, with anxiety,
the concern about the stressor is out of proportion to
the realistic threat. Second, anxiety is often associated
with elaborate mental and behavioral activities
designed to avoid the unpleasant symptoms of a full-

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Adults and Mental Health

blown anxiety or panic attack. Third, anxiety is usually
longer lived than arousal. Fourth, anxiety can occur
without exposure to an external stressor.

Other limitations of this model became evident
from a lack of support from clinical and basic research
(Coplan 8~ Lydiard, 1998). Furthermore, with its
emphasis on the neurotransmitter norepinephrlne, the
model could not explain why medications that acted on
the neurotransmitter serotonin (the selective serotonin
reuptake inhibitors, or SSRIs) helped to alleviate
anxiety symptoms. In fact, these medications are
becoming the first-line treatment for anxiety disorders
(Kent et al., 1998). To probe the etiology of anxiety,
researchers began to devote their energies to the study
of other brain circuits and the neurotransmitters on
which they rely. The locus ceruleus still participates in
anxiety but is understood to play a lesser role.

New Views About the Anatomical and
Biochemical Basis of Anxiety
An exciting new line of research proposes that anxiety
engages a wide range of neurocircuits. This line of
research catapults to prominence two key regulatory
centers found in the cerebral hemispheres of the
brain-the hippocampus and the amygdala. These
centers,  in turn,  are thought to activate the
hypothalamic-pituitary-adrenocortical (HPA) axis3
(Goddard & Chamey, 1997; Coplan & Lydiard, 1998;
Sullivan et al.,  1998). Researchers have long
established the contribution of the HPA axis to anxiety
but have been perplexed by how it is regulated. They
are buoyed by new findings about the roles of the
hippocampus and the amygdala.

The hippocampus and the amygdala govern
memory storage and emotions, respectively, among
their other functions. The hippocampus is considered
important in verbal memory, especially of time and
place for events with strong emotional overtones
(McEwen, 1998). The hippocampus and amygdala are
major nuclei of the limbic system, a pathway known to

3

Hypothalamus and the pituitary gland, and then the cortex,
or outer layer, of the adrenal gland. Upon stimulation by the
pituitary hormone ACTH, the adrenal cortex releases gluco-
corticoids into the circulation.

underlie emotions. There are anatomical projections
between the hippocampus, amygdala, and hypothal-
alamus (Jacobson & Sapolsky, 1991; Charney &
Deutch, 1996; Coplan & Lydiard, 1998).
Studies of emotional processing in rodents
(LeDoux, 1996; Rogan & LeDoux, 1996; Davis, 1997)
and in humans with brain lesions (Adolphs et al., 1998)
have identified the amygdala as critical to fear
responses. Sensory information enters the lateral
amygdala, from which processed information is passed
to the central nucleus, the major output nucleus of the
amygdala. The central nucleus projects, in turn, to
multiple brain systems involved in the physiologic and
behavioral responses to fear. Projections to different
regions of the hypothalamus activate the sympathetic
nervous system and induce the release of stress
hormones, such as CRH: The production of CRH in
the paraventricular nucleus of the hypothalamus
activates a cascade leading to release of glucocorticoids
from the adrenal cortex. Projections from the central
nucleus innervate different parts of the periaqueductal
gray matter, which initiates descending analgesic
responses (involving the body's endogenous opioids)
that can suppress pain in an emergency, and which also
activates species-typical defensive responses (e.g.,
many animals freeze when fearful).
  Anxiety differs from fear in that the fear-producing
stimulus is either not present or not immediately
threatening, but in anticipation of danger, the same
arousal, vigilance, physiologic preparedness, and
negative affects and cognitions occur. Different types
of internal or external factors or triggers act to produce
the anxiety symptoms of panic disorder, agoraphobia,
post-traumatic stress disorder, specific phobias, and
generalized anxiety disorder, and the prominent anxiety
that commonly occurs in major depression. It is
currently a matter of research to determine whether
dysregulation of these fear pathways leads to the
symptoms of anxiety disorders. It has now been
established, using noninvasive neuroimaging, that the
human amygdala is also involved in fear responses.
Fearful facial expressions have been shown to activate

4 Also known as coriocotropin-releasing factor.

239


Mental Health: A Report of the Surgeon General

the amygdala in MRI studies of normal human subjects
(Breiter et al., 1996). Functional imaging studies in
anxiety disorders, such as PET studies of brain
activation in phobias (Rauch et al., 1993, are also
beginning to investigate the precise neural circuits
involved in the anxiety disorders.
What is especially exciting is that neuroimaging
has furnished direct evidence in humans of the
damaging effects of glucocorticoids. In people with
post-traumatic stress disorder, neuroimaging studies
have found a reduction in the size of the hippocampus.
The reduced volume appears to reflect the atrophy of
dendrites-the receptive portion of nerve cells-in a
select region of the hippocampus. Similarly, animals
exposed to chronic psychosocial stress display atrophy
in the same hippocampal region (McEwen &
Magarinos,  1997). Stress-induced increases in
glucocorticoids are thought to be responsible for the
atrophy (McEwen, 1998). If the hippocampus is
impaired, the individual is thought to be less able to
draw on memory to evaluate the nature of the stressor
(McEwen, 1998).

A/eurofransmitfer Alterations

There are many neurotransmitter alterations in anxiety
disorders. In keeping with the broader view of anxiety,
at least five neurotransmitters are perturbed in anxiety:
serotonin, norepinephrine, gamma-aminobutyric acid
(GABA), corticotropin-releasing hormone (CRH),5 and
cholecystokinin (Coplan & Lydiard 1998; Rush et al.,
1998). There is such careful orchestration between
these neurotransmitters that changes in one
neurotransmitter system invariably elicit changes in
another, including extensive feedback mechanisms.
Serotonin and GABA are inhibitory neurotransmitters
that quiet the stress response (Rush et al., 1998). All of
these neurotransmitters have become important targets
for therapeutic agents either already marketed or in
development (as discussed in the section on treatment
of anxiety disorders).

s CRH may act as a neuromodulator, a neurotransmitter, or a
neurohormone. depending on the pathway.

Psychological Views of Anxiety
There are several major psychological theories of
anxiety: psychoanalytic and psychodynamic theory,
behavioral theories, and cognitive theories (Thorn et
al., 1999). Psychodynamic theories have focused on
symptoms as an expression of underlying conflicts
(Rush et al., 1998; Thorn et al., 1999). Although there
are no empirical  studies to support these
psychodynamic theories, they are amenable to scientific
study (Kandel, 1999) and some therapists find them
useful. For example, ritualistic compulsive behavior
can be viewed as a result ,of a specific defense
mechanism that serves to channel `psychic energy away
from conflicted or forbidden impulses. Phobic
behaviors similarly have been viewed as a result of the
defense mechanism of displacement. From the
psychodynamic perspective, anxiety usually reflects
more basic,  unresolved conflicts  in intimate
relationships or expression of anger.
More recent behavioral theories have emphasized
the importance of two types of learning: classical
conditioning and vicarious or observational learning.
These theories have some empirical evidence to support
them. In classical conditioning, a neutral stimulus
acquires the ability to elicit a fear response after
repeated pairings with a frightening (unconditioned)
stimulus. In vicarious learning, fearful behavior is
acquired by observing others' reactions to fear-
inducing stimuli (Thorn et al., 1999). With general
anxiety disorder, unpredictable positive and negative
reinforcement is seen as leading to anxiety, especially
because the person is unsure about whether avoidance
behaviors are effective.
  Cognitive factors, especially the way people
interpret or think about stressful events, play a critical
role in the etiology of anxiety (Barlow et al., 1996;
Thorn et al., 1999). A decisive factor is the individual's
perception, which can intensify or dampen the
response. One of the most salient negative cognitions
in anxiety is the sense of uncontrollability. It is typified
by a state of helplessness due to a perceived inability to
predict, control, or obtain desired results (Barlow et al.,
1996). Negative cognitions are frequently found in
individuals with anxiety (Ingram et al., 1998). Many

240


Adults and Mental Health

,,,odem psychological models of anxiety incorporate
the role of individual vulnerability, which includes both
genetic (Smoller & Tsuang, 1998) and acquired
, Coplan et al.. 1997) predispositions. There is evidence
that vvomen may ruminate more about distressing life
e\`ents compared with men, suggesting that a cognitive
ri>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

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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

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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).

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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.

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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

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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

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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. 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 and advice, particularly about
taking medications.

9. 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.

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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. This nascent trend is
driven both by the consvmer movement in
American society and by a strong focus on
consumer rights in a managed care environment.
First steps include the voluntary adoption of the
principles of the Consumer Bill of Rights by
Federal agencies and passage of legislation
requiring their national implementation.

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               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

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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

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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

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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.

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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