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The Center for Mental Health Services

Substance Abuse and Mental Health 

Services Administration National Institutes of Health

For sale by the Superintendent of Documents,

P.O. Box 371954, Pittsburgh, PA 15250–7954

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.
		



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The United States leads the world in understanding the importance of overall health and wellbeing 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 and 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.





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 Mental 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 (NIH), 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




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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

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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.

Virginia Trotter Betts, 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.


	

Howard H. Goldman, M.D., Ph.D., Senior Scientific

Editor, Professor of Psychiatry, University of Maryland 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.


	

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.
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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.

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.

Ronald W. Manderscheid, Ph.D., Chief, Survey and

Analysis Branch, Center for Mental Health Services,

Substance Abuse and Mental Health Services

Administration, Rockville, Maryland.

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.

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.

	


Miriam Davis, Ph.D., Medical Writer and Consultant,

Silver Spring, Maryland.

	


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.




Mary Lou Andersen, Deputy Director, Bureau of

Primary Health Care, Health Resources and Services

Administration, 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.

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.

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.

Judith Cook, Ph.D., Director, National Research and

Training Center on Psychiatric Disability; Professor,

Department of Psychiatry, University of Illinois at

Chicago, Chicago, Illinois.

Margaret Coopey, R.N., Senior Health Policy Analyst,

Director, Center for Practice and Technology

Assessment, Agency for Health Care Policy and

Research, Rockville, Maryland.

Gail Daniels, Board President, The Federation of

Families for Children’s Mental Health, Washington,

D.C.

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.
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Mary Jane England, M.D., President, Washington

Business Group on Health, Washington, D.C. 

Michael English, J.D., Director, Division of Knowledge

Development and Systems Change, Center for Mental

Health Services, Substance Abuse and Mental Health

Services 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.

Mary Harper, R.N., Ph.D., Gerontologist, Tuscaloosa,

Alabama.

Elliott Heiman, M.D., Chief of Staff of Psychiatry, St.

Mary’s Hospital, Tucson, Arizona.

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 Hernandez, 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 Center, 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.
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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.


	
 


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 Ahern, 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.

Cornelia 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.
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xi

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. Burns, 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.

Josefina Carbonell, 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.
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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 Hernandez, 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, National 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.
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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.
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xiv

Ariela C. Rodriguez, Ph.D., L.C.S.W., A.C.S.W.,

Director, Health and 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 Stricker, Ph.D., Distinguished Research

Professor of Psychology, Derner 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.

!

	

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.
$FNQRZOHGJPHQWV

xv

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 Gramley, 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 Coordinator, 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.

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.
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xvi

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.

"	"

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The Carter Center, Atlanta, Georgia.

The John D. and Catherine T. MacArthur Foundation,

Chicago, Illinois.

,QGLYLGXDOV

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 Promotion, 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.

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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.
$FNQRZOHGJPHQWV

xvii
	









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

The Roots of Stigma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 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

Research Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Levels of Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Overview of the Report’s Chapters . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Chapter Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 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

Preparation of the Report . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24
blank page
3

	







This first Surgeon General’s Report on Mental

Health is issued at the culmination of a half-century

that has witnessed remarkable advances in the

understanding of mental disorders and the brain and in

our appreciation of the centrality of mental health to

overall health and well-being. The report was prepared

against a backdrop of growing awareness in the United

States and throughout the world of the immense burden

of disability associated with mental illnesses. In the

United States, mental disorders collectively account for

more than 15 percent of the overall burden of disease

from all causes and slightly more than the burden

associated with all forms of cancer (Murray & Lopez,

1996). These data underscore the importance and

urgency of treating and preventing mental disorders and

of promoting mental health in our society. 

The report in its entirety provides an up-to-date

review of scientific advances in the study of mental

health and of mental illnesses that affect at least one in

five Americans. Several important conclusions may be

drawn from the extensive scientific literature

summarized in the report. One is that a variety of

treatments of well-documented efficacy exist for the

array of clearly defined mental and behavioral

disorders that occur across the life span. Every person

should be encouraged to seek help 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

strengthen 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 and the 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. 




 !"

##

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 psychosocial 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 prevention, 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

4

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 promotion. 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. 

	


	
	

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,1

 conducted by

the World Health Organization, the World Bank, and

Harvard University, reveal that mental illness,

including suicide,2

 ranks second in the burden of

disease in established market economies, such as the

United States (Table 1-1).

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 1-1. Disease burden by selected illness

categories in established market

economies, 1990

Percent of

Total DALYs*

All cardiovascular conditions 18.6

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.

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 1-2). Schizophrenia, bipolar

disorder, obsessive-compulsive disorder, panic

disorder, and post-traumatic stress disorder also

contributed significantly to the burden represented by

mental illness.

Table 1-2. Leading sources of disease burden in

established market economies, 1990

Total

DALYs

(millions)

Percent

of Total

All causes 98.7

1 Ischemic 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.


	


	

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

1

 Murray & Lopez, 1996.

2

 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 4-1.
Introduction and Themes

5

are the ingredients of each individual’s successful

contribution to community and society. Americans are

inundated with messages about success—in school, in

a profession, in parenting, in relationships—without

appreciating that successful performance rests on a

foundation of mental health.

Many ingredients of mental health may be

identifiable, but mental health is not easy to define. In

the words of a distinguished leader in the field of

mental health prevention, “. . . built into any definition

of wellness . . . are overt and covert expressions of

values. Because values differ across cultures as well as

among subgroups (and indeed individuals) within a

culture, the ideal of a uniformly acceptable definition

of the constructs is illusory” (Cowen, 1994). In other

words, what it means to be mentally healthy is subject

to many different interpretations that are rooted in

value judgments that may vary across cultures. The

challenge of defining mental health has stalled the

development of programs to foster mental health

(Secker, 1998), although strides have been made with

wellness programs for older people (Chapter 5).

Mental illness is the term that refers collectively to

all diagnosable mental disorders. Mental disorders are

health conditions that are characterized by alterations

in thinking, mood, or behavior (or some combination

thereof) associated with distress and/or impaired

functioning. Alzheimer’s disease exemplifies a mental

disorder largely marked by alterations in thinking

(especially forgetting). Depression exemplifies a

mental disorder largely marked by alterations in mood.

Attention-deficit/hyperactivity disorder exemplifies a

mental disorder largely marked by alterations in

behavior (overactivity) and/or thinking (inability to

concentrate). Alterations in thinking, mood, or behavior

contribute to a host of problems—patient distress,

impaired functioning, or heightened risk of death, pain,

disability, or loss of freedom (American Psychiatric

Association, 1994).

This report uses the term “mental health problems”

for signs and symptoms of insufficient intensity or

duration to meet the criteria for any mental disorder.

Almost 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; Frasure-Smith et 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. 

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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
Mental Health: A Report of the Surgeon General

6

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. 

&

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 19thcentury 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 modern world.

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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
Introduction and Themes

7

the deinstitutionalization movement that began in the

1950s with the goal of shifting patients and care to the

community. 

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V

Nationally representative surveys have tracked public

attitudes about mental illness since the 1950s (Star,

1952, 1955; Gurin et al., 1960; Veroff et al., 1981). To

permit comparisons over time, several surveys of the

1970s and the 1990s phrased questions exactly as they

had been asked in the 1950s (Swindle et al., 1997). 

In the 1950s, the public viewed mental illness as a

stigmatized condition and displayed an unscientific

understanding of mental illness. Survey respondents

typically were not 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 behavior—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 modern 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

psychological stress (Link et al., in press). Yet, in

comparison with the 1950s, 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 disorder. 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). In fact, 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).
Mental Health: A Report of the Surgeon General

8

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 and deinstitutionalization (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.

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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.

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 formal

support increasingly preferred counselors,

psychologists, and social workers (Swindle et al.,

1997).

6WLJPD DQG 3D\LQJ IRU 0HQWDO 'LVRUGHU 7UHDWPHQW

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).

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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

(Corrigan & Penn, 1999).
Introduction and Themes

9

Another way to eliminate stigma is to find causes

and effective treatments for mental disorders (Jones,

1998). History suggests this to be true. Neurosyphilis

and pellagra are illustrative of mental disorders for

which stigma has receded. In the early part of this

century, about 20 percent of those admitted to mental

hospitals had “general paresis,” later identified as

tertiary syphilis (Grob, 1994). This advanced stage of

syphilis occurs when the bacterium invades the brain

and causes neurological deterioration (including

psychosis), paralysis, and death. The discoveries of an

infectious etiology and of penicillin led to the virtual

elimination of neurosyphilis. Similarly, when pellagra

was traced to a nutrient deficiency, and nutritional

supplementation with niacin was introduced, the

condition was eventually eradicated in the developed

world. 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

toward 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

adversely affected when causes and treatments were

identified. As advances were achieved, each condition

was 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

superstition and myth” (Grob, 1991).

These historical examples signify that stigma

dissipates for individual disorders once advances

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 to 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. 

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&

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 from numerous 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
Mental Health: A Report of the Surgeon General

10

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.

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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 and effect 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 consequences (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.

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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
Introduction and Themes

11

conducted by the drug’s manufacturer or sponsor

(FDA, 1998). The FDA’s decision to approve a drug

represents the culmination of a lengthy, researchintensive 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

must be high. Although there are no formal Federal

laws governing which psychotherapies can be

introduced into practice, professional groups and

experts in the field strive to assess the level of evidence

in a given area through task forces, review articles, and

other methods for evaluating the body of published

studies 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

by a group within the American Psychological

Association (APA), one of the main professional

organizations of psychologists. Beginning in the mid1990s, 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

of criteria that also was used or adapted by subsequent

task forces. The first task force actually developed two

sets of criteria: the first, and more rigorous, set of

criteria was for Well-Established Treatments, while the

other set was for Probably Efficacious Treatments

(Chambless et al., 1996). For a psychotherapy to be

well 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.

Another way of evaluating a collection of studies

is through a formal statistical technique called a metaanalysis. 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.

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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. Modern

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

3

 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).
Mental Health: A Report of the Surgeon General

12

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
Introduction and Themes

13

insurance financing become a significant issue in the

mental health field; these are discussed, as is the advent

of managed care. The chapter 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 health care and mental health care and

describes 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

and its uses have risen. As Chapter 7 illustrates, privacy

concerns are particularly keenly felt in the mental

health field, beginning with the importance of an

assurance of confidentiality in individual decisions to

seek mental health treatment. The chapter reviews 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 and substance abuse

information. 

Chapter 8 concludes, on the basis of the extensive

literature that the Surgeon General’s report reviews and

summarizes, that the efficacy of mental health

treatment is well-documented. Moreover, there exists

a range of treatments from which people may choose a

particular approach to suit their 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 mental illness. The chapter explores

opportunities to overcome barriers to implementing the

recommendation and to have seeking help lead to

effective treatment. 

#!

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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 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 “topdown” 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. 

Effective 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
Mental Health: A Report of the Surgeon General

14

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 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 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 nearterm future is to speed the transfer of new evidencebased 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 selfhelp 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:
Introduction and Themes

15

 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. 

 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 psychosocial treatments—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)

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 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. 

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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
Mental Health: A Report of the Surgeon General

16

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, everchanging 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
Introduction and Themes

17

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

associated 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 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 supporting the increasingly more

prominent role that families are assuming in caring for

older, mentally impaired and mentally ill family

members. 

#+ 

 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 impairment.”

 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
Mental Health: A Report of the Surgeon General

18

mental disorders and improving social and

emotional development by providing, for example,

educational programs for young children, parenteducation programs, and nurse home visits.

 6. A range of efficacious psychosocial and

pharmacologic treatments exists for many mental

disorders in children, including attentiondeficit/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.

#, !

 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. 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. 

 5. 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.

 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
Introduction and Themes

19

gaps between what research recommends and what

typically is available in communities.

10. Sensitivity to culture, race, gender, disability,

poverty, and the need for consumer involvement

are important considerations for care and treatment.

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.

#- !

 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.

 2. Continued intellectual, social, and physical activity

throughout the life cycle are important for the

maintenance of mental health in late life. 

 3. 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

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. 

#. /*&



In the United States in the late 20th century, researchbased 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.
Mental Health: A Report of the Surgeon General

20

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.

	








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. 
Introduction and Themes

21

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 implemented 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. 

 6. 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.

#3 4&*!!5

&'

!

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
Mental Health: A Report of the Surgeon General

22

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. Improve Public Awareness of Effective 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 categories—counseling, psychotherapy, medication therapy, rehabilitation—yet within each category are

many more choices. All human services

professionals, not just health professionals, have an

obligation to be better informed about mental health

treatment resources in their communities 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 fundamental components of effective

service delivery, which include integrated

community-based services, continuity of providers

and treatments, family support services (including

psychoeducation), and culturally sensitive services,

are broadly agreed upon, yet certain of these and

other mental health services are in consistently short

supply, both regionally and, in some instances,

nationally. Because the service system as a whole, 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 health 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

other human services must be prepared to assess and,

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 translated into community settings. Numerous

explanations for the gap between what is known from

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 influenced 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

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, and value systems. With

appropriate training and a fundamental respect for
Introduction and Themes

23

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.

Nonetheless, the preference of many members of

ethnic and racial minority groups to be treated by

mental health professionals of similar background

underscores the need to redress the current

insufficient supply of mental health professionals

who are members of racial and ethnic minority

groups.

 7. Facilitate Entry Into Treatment: Public and private

agencies have an obligation to facilitate entry into

mental 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

preferences of service users and their families. At the

same time, some agencies receive inappropriate

referrals. For example, an alarming number of

children and adults with mental illness are in the

criminal justice system inappropriately. Importantly,

assuring the small number of individuals with severe

mental disorders who pose a threat of danger to

themselves or others ready access to adequate and

appropriate services promises to reduce significantly

the need for coercion in the form of involuntary

commitment to a hospital and/or 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

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 health and mental illness. It considers

mental health facets of some conditions which are not

always associated with the mental disorders 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

developmental disabilities and mental retardation are not

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 and other drug use disorders. The latter, however,

co-occur with such frequency with the other mental

disorders, which are the focus of this report, that the cooccurrence is discussed throughout. The report covers the

epidemiology of addictive disorders and their cooccurrence 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.

#&#

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
Mental Health: A Report of the Surgeon General

24

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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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

Imaging the Brain . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38

Overview of Mental Illness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39

Manifestations of Mental Illness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40

Anxiety . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40

Psychosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41

Disturbances of Mood . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42

Disturbances of Cognition . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43

Other Symptoms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43

Diagnosis of Mental Illness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43

Epidemiology of Mental Illness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45

Adults . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46

Children and Adolescents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46

Older Adults . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48

Future Directions for Epidemiology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48

Costs of Mental Illness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49

Overview of Etiology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49

Biopsychosocial Model of Disease . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50

Understanding Correlation, Causation, and Consequences . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51

Biological Influences on Mental Health and Mental Illness . . . . . . . . . . . . . . . . . . . . . . . . . . . 52

The Genetics of Behavior and Mental Illness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52

Infectious Influences . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 54

PANDAS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55


Psychosocial Influences on Mental Health and Mental Illness . . . . . . . . . . . . . . . . . . . . . . . . . . 55

Psychodynamic Theories . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55

Behaviorism and Social Learning Theory . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 56

The Integrative Science of Mental Illness and Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57

Overview of Development, Temperament, and Risk Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57

Physical Development . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 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

Overview of Prevention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62

Definitions of Prevention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62

Risk Factors and Protective Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63

Overview of Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 64

Introduction to Range of Treatments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 64

Psychotherapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65

Psychodynamic Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 66

Behavior Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 66

Humanistic Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67

Pharmacological Therapies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 68

Mechanisms of Action . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 68

Complementary and Alternative Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70

Issues in Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70

Placebo Response . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70

Benefits and Risks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 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
217(176&217,18('

Overview of Cultural Diversity and Mental Health Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 80

Introduction to Cultural Diversity and Demographics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 81

Coping Styles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 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

Clinician Bias . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 88

Improving Treatment for Minority Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 88

Ethnopsychopharmacology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 88

Minority-Oriented Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 89

Cultural Competence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 90

Rural Mental Health Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92

Overview of Consumer and Family Movements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92

Origins and Goals of Consumer Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 93

Self-Help Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 94

Accomplishments of Consumer Organizations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95

Family Advocacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 96

Overview of Recovery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97

Introduction and Definitions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97

Impact of the Recovery Concept . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 98

Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 100

Mental Health and Mental Illness Across the Lifespan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 102

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 104
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31

	









Avast body of research on mental health and, to an

even greater extent, on mental illness constitutes

the 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

mental health. Modern 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 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 modern

neuroscience that has begun to integrate knowledge

from biological and behavioral sciences.

An overview of mental illness follows the section

on modern 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 sociocultural 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
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32

Figure 2-1. Structural variety of neurons

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.

  

!" #$%& 

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

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 2-1 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.)

1

 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.
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33

The workings of the brain depend on the ability of

nerve cells to communicate with each other.

Communication occurs at small, specialized structures

called 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

signalling chemicals, or neurotransmitters. The second

is a postsynaptic structure on the dendrites of the

receiving neuron that has receptors for the

neurotransmitter molecules. 

The typical neuron has a cell body, which contains

the genetic material, and much of the cell’s energyproducing 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

carried along what is usually a single branch called the

axon. It is down this part of the neuron that signals are

transmitted out to the next neuron. At its end, the axon

may branch into many terminals. (Figure 2-2.) 

The usual form of communication involves

electrical signals that travel within neurons, giving rise

to chemical signals that diffuse, or cross, synapses,

which 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

between 100,000 and 200,000 connections with other

neurons. 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

synaptic 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 aweinspiring 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 recognizer 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-
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34

Figure 2-2. How neurons communicate

Source: Fischbach, 1992, p. 52. (Permission granted: Tomo Narashima.)

b 

g,~~~~ +40 

PROPAGATION 

0 

RESTING 

/POTENTIAL 

-70 
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35

Figure 2-3. The brain: Organ of the mind

Source: Fischbach, 1992, p. 51. (Permission granted: Carol Donner.)

cortical “white matter,” so named because of its

appearance on freshly cut brain sections, surrounds

deep aggregations of neurons, or “gray matter,” which,

like the cortex, appears gray because of the presence of

neuronal cell bodies. It is within this gray matter that

the brain processes information. The white matter is

akin to wiring that conveys information from one

region to another. Gray matter regions include the basal

ganglia, the part of the brain that is involved in the

initiation of motion and thus profoundly affected in
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36

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.

!" #$%&! 

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 neurotransmitters 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-releasing 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
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37

molecule (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

the cell. The entry of positive charge may activate

additional 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

farther away from firing. The classic inhibitory

neurotransmitters in the brain are the amino acids

gamma amino butyric acid, or GABA, and, to a lesser

degree, glycine. 

Most of the other neurotransmitters in the brain,

such as dopamine, serotonin, and norepinephrine, and

all 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

interact with signaling proteins, called “G proteins”

found inside the cell membrane. These receptors thus

are 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

signals from glutamate or GABA. 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 substantia nigra, and the ventral tegmental

area. Norepinephrine neurons are made in the nucleus

locus coeruleus even farther down in the brain stem in

a structure called the pons. Serotonin is made by a

somewhat larger number of nuclei but, still, not by

many cells. Nuclei called the raphe 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.
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38

!" #$%& $

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. 

!''%

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
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39

genetic and, thus, predetermined; similarly, references

to “psychological” or even “social” phenomena do not

exclude 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

neuroscience is not reductionist; the goal is to

understand behavior, not to put blinders on and try to

explain it away. As the foregoing discussion illustrates,

the brain also is complex. Thus, having a disease that

affects one or even many critical circuits does not

overthrow, except in extreme cases, such as advanced

Alzheimer’s disease, all aspects of a person. Typically,

people retain their personality and, in most cases, their

ability to take responsibility for themselves. 

In retrospect, early biological models of the mind

seem impoverished and deterministic—for example,

models that held that “levels” of a neurotransmitter

such as serotonin in the brain were the principal

influence on whether one was depressed or aggressive.

Neuroscience is far beyond that now, working to

integrate information coming “bottom-up” from genes

and molecules and cells, with information flowing

“top-down” from interactions with the environment and

experience to the internal workings of the mind and its

neuronal circuits. Ultimately, however, the goal is not

only human self-understanding. In knowing eventually

precisely what goes wrong in what circuits and what

synapses and with what chemical signals, the hope is to

develop treatments with greater effectiveness and with

fewer 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. 

(()  

Mental 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 modern 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 manifestations 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
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40

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.

  

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. 

$Q[LHW\

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 form of 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 appropriate 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 posttraumatic 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
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41

behavior such as hand washing or checking, there is an

experience of severe anxiety. Thus while the outward

manifestations of obsessive-compulsive disorder may

seem to be related to other anxiety disorders, there

appears to be a strong component of abnormal

regulation of anxiety underlying this disorder. Posttraumatic stress disorder is produced by an intense and

overwhelmingly fearful event that is often lifethreatening in nature. The characteristic symptoms that

result from such a traumatic event include the persistent

reexperience of the event in dreams and memories,

persistent avoidance of stimuli associated with the

event, and increased arousal.

3V\FKRVLV

Disturbances of perception and thought process fall

into a broad category of symptoms referred to as

psychosis. The threshold for determining whether

thought is impaired varies somewhat with the cultural

context. Like anxiety, psychotic symptoms may occur

in a wide variety of mental disorders. They are most

characteristically associated with schizophrenia, but

psychotic symptoms can also occur in severe mood

disorders. 

One of the most common groups of symptoms that

result from disordered processing and interpretation of

sensory information are the hallucinations.

Hallucinations are said to occur when an individual

experiences a sensory impression that has no basis in

reality. This impression could involve any of the

sensory 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 experienced. In addition to

hallucinations and delusions, patients with

psychotic disorders such as schizophrenia frequently 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

& Hallucinations

& 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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

42

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 situations. 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.

'LVWXUEDQFHV RI 0RRG

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

& Persistent sadness or despair

& Insomnia (sometimes hypersomnia)

& Decreased appetite

& Psychomotor retardation

& Anhedonia (inability to experience pleasure)

& Irritability

& Apathy, poor motivation, social withdrawal

& Hopelessness

& Poor self-esteem, feelings of helplessness

& Suicidal ideation

Symptoms Commonly Associated With Mania

& Persistently elevated or euphoric mood

& Grandiosity (inappropriately high self-esteem)

& Psychomotor agitation

& Decreased sleep

& Racing thoughts and distractibility

& Poor judgment and impaired impulse control

& Rapid or pressured speech
7KH )XQGDPHQWDOV RI 0HQWDO +HDOWK DQG 0HQWDO ,OOQHVV

43

It is not known why diverse functions such as

sleep and appetite should be altered in disorders of

mood. However, depression and mania are typically

associated with characteristic changes in these

basic functions. Mood appears to represent a

complex group of behaviors and responses that

undergo precise and tightly controlled regulation.

Higher organisms that must adapt to changing

environments depend on optimal control of basic

functions such as sleep, appetite, sex, and physical

activity. 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

functions, 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.

'LVWXUEDQFHV RI &RJQLWLRQ

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. 

2WKHU 6\PSWRPV

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.


'  

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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

44

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, DSM-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-IV)

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
7KH )XQGDPHQWDOV RI 0HQWDO +HDOWK DQG 0HQWDO ,OOQHVV

45

DSM-IV and its predecessors2 represent a

unique approach to diagnosis by a professional

field. No other sphere of health care has created

such an extensive compendium of all of its

disorders with explicit diagnostic criteria. The

World Health Organization’s International

Classification of Diseases (10th edition, 1992) is a

valuable compendium of all diseases. Its mental

health categories are expanded upon in DSM-IV.

The International Classification of Diseases (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

Modification, 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

falls 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.

	



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., 1-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

2 DSM-I (American Psychiatric Association, 1952), DSM-II

(American Psychiatric Association, 1968), DSM-III (American

Psychiatric Association, 1979), and DSM-III-R (American

Psychiatric Association, 1987).
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46

population, which this report refers to as “mental

health problems.”

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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 policymakers 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

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 obsessivecompulsive 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 healthrelated reasons from the Social Security

Administration (NAMHC, 1993).

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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).

3

 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. 

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.
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47

Table 2-6. Best estimate 1-year prevalence rates based on ECA and NCS, ages 18%54

ECA Prevalence (%) NCS Prevalence (%) Best Estimate ** (%)

Any Anxiety Disorder

Simple Phobia

Social Phobia

Agoraphobia

GAD

Panic Disorder

OCD

PTSD

13.1

8.3

2.0

4.9

(1.5)*

1.6

2.4

(1.9)*

18.7

8.6

7.4

3.7

3.4

2.2

(0.9)*

3.6

16.4

8.3

2.0

4.9

3.4

1.6

2.4

3.6

Any Mood Disorder

MD Episode

Unipolar MD

Dysthymia

Bipolar I

Bipolar II

7.1

6.5

5.3

1.6

1.1

0.6

11.1

10.1

8.9

2.5

1.3

0.2

7.1

6.5

5.3

1.6

1.1

0.6

Schizophrenia

Nonaffective Psychosis

Somatization

ASP

Anorexia Nervosa

Severe Cognitive 

Impairment

1.3

&

0.2

2.1

0.1

1.2

&

0.2

&

&

&

&

1.3

0.2

0.2

2.1

0.1

1.2

Any Disorder 19.5 23.4 21.0

*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
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48

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.

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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 1-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.

	






The epidemiology of mental disorders is somewhat

handicapped by the difficulty of identifying a

“case” of a mental disorder. “Case” is an

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

Table 2-8. Best estimate prevalence rates based

on Epidemiologic Catchment Area,

age 55+

Prevalence (%)

Any Anxiety Disorder 11.4

Simple Phobia 7.3

Social Phobia 1.0

Agoraphobia 4.1

Panic Disorder 0.5

Obsessive-Compulsive

Disorder 1.5

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 0.6

Somatization 0.3

Antisocial Personality Disorder 0.0

Anorexia Nervosa 0.0

Severe Cognitive Impairment 6.6

Any Disorder 19.8

Source: D. Regier, W. Narrow, & D. Rae, personal communication, 1999
7KH )XQGDPHQWDOV RI 0HQWDO +HDOWK DQG 0HQWDO ,OOQHVV

49

illness, the course and duration of illness, response

to treatment, and degree of functional impairment.

One problem has been that there is no clearly

measurable threshold for functional impairments.

Efforts are currently under way in the epidemiology

of mental disorders to create a threshold, or agreedupon minimum level of functional limitation, that

should 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

symptom clusters and has not uniformly

applied—or, at times, even measured—the level of

dysfunction. Ongoing reanalyses of existing

epidemiological 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

are 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

need, 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.

  

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 calculate 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.

(() '$

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, psychological, 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,
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

50

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.

%"$ * 


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
7KH )XQGDPHQWDOV RI 0HQWDO +HDOWK DQG 0HQWDO ,OOQHVV

51

percent do (Breslau et al., 1998), but estimates are

higher for particular types of trauma. For women

who are victims of crime, one study found the

prevalence of PTSD in a representative sample of

women to be 26 percent (Resnick et al., 1993). The

likelihood of developing PTSD is related to

pretrauma vulnerability (in the form of genetic,

biological, and personality factors), magnitude of

the stressful event, preparedness for the event, and

the 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.

**' 

*+

Any discussion of the etiology of mental health and

mental 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

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

5

 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.”
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52

(IOM, 1994b).6 This means that correlational

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 mental 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 biological changes and later has

psychological, biological, and social consequences.

When a patient receives news of the cancer

diagnosis, the brain’s sensory cortex simultaneously 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

this case, consequences of the cancer diagnosis,7

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.

% '    

*  

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.

7KH *HQHWLFV RI %HKDYLRU DQG 0HQWDO ,OOQHVV

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

6

 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.

7

 Anxiety and depression may in some cases be caused by hormonal

changes related to the tumor itself.
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53

ensuing years, gaps in the sequence will be closed,

errors will be corrected, and the precise boundaries

of genes will be identified. 

In parallel, clinical medicine is studying the

aggregation of human disease in families. This

effort includes the study of mental illness, most

notably schizophrenia, bipolar disorder (manic

depressive illness), early onset depression, autism,

attention-deficit/hyperactivity disorder, anorexia

nervosa, 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

as Huntington’s disease and cystic fibrosis result

from the transmission of a mutation—that is, a

deleteriously 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

Mendelian transmission, after the Austrian monk,

Gregor 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

basis of modern methods. Indeed, for almost all

Mendelian disorders across medicine that affect

more than a few people, the genes already have

been identified. 

In 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

will 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 contributes to the variation of a disease or trait in a

population at a given point in time (Plomin et al.,
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54

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.8

 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 heritability of schizophrenia, the median concordance rate

among identical twins is 46 percent9

 (NIMH, 1998),

meaning that in over half of the cases, the second

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.

,QIHFWLRXV ,QIOXHQFHV

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 pallidum—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

8

 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).
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55

macrophages 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

sclerosing panencephalitis (Kaplan & Sadock,

1998). More recently, research has uncovered an

infectious etiology to one form of obsessivecompulsive disorder, as explained below.

3$1'$6

In the late 1980s, it was discovered that some

children with obsessive-compulsive disorder (OCD)

experienced a sudden onset of symptoms soon after

a 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

autoimmune 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.

$   

 *  

This chapter thus far has highlighted some of the

psychosocial influences on mental health and

mental illness. Stressful life events, 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.

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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
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56

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, and 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.

%HKDYLRULVP DQG 6RFLDO /HDUQLQJ 7KHRU\

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

B. 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
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57

the individual is irrelevant, for humans are equated

with “black boxes.” Mental disorders represented

maladaptive behaviors that were learned. They

could be unlearned through behavior modification

(behavior therapy) (Kazdin, 1996; 1997). 

The movement beyond behaviorism was

spearheaded by Albert Bandura (1969, 1977), the

originator of social learning theory (also known as

social cognitive theory). Social learning theory has

its roots in behaviorism, but it departs in a

significant way. While acknowledging classical and

operant conditioning, social learning theory places

far 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.

'(  

* 

Progress in understanding depression and schizophrenia 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” (Kosslyn & 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, neuroscientist Eric R. Kandel has furnished a novel

approach. His essay, “A New Intellectual Framework 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.

(()
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!"!*,


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,
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58

although there is some overlap. Their major works,

published in the 1950s and 1960s, 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 sociocultural phenomena that make us who we are.

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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 monumentally 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 epigenetic10 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

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,11 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

10 Epigenetic influences are those that arise from outside the genes

and lead to emergent, as opposed to predetermined, properties.

11 Newborns turn their head towards things—typically the

breast—that touch their cheek.
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59

cherished ability to smile, which helps to solidify

a social bond with parents and caregivers. What

begins as a child’s biological survival need for

food—evidenced by such behaviors as rooting and

sucking—can turn into a social, interpersonal

experience 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 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:

& Behavioral maturation proceeds from the

simple to the complex;

& Future behaviors, whether temporally near or

distant, are a product of their antecedents (prior

responses to the developmental environment);

and

& 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

neurobiological development, as well as behavioral/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.

3LDJHW &RJQLWLYH 'HYHORSPHQWDO 7KHRU\

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 know 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. 

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7KHRU\

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). 
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60

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 inwardlooking 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.

-RKQ %RZOE\ $WWDFKPHQW 7KHRU\ RI

'HYHORSPHQW

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, 1951). 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 able to organize other

elements of development in a coherent way. In

contrast, instability in the caregiving relationship—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. 

*& !

$

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

1950s, 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
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61

one another: nature can influence nurture, and

nurture can influence nature (Plomin, 1996).

Studies comparing identical and fraternal twins

have shed light on the contributions of nature and

nurture. These studies show that for many

behavioral traits, as well as mental disorders, there

is a noticeable heritable component (see earlier

discussion of heritability). Yet even with the most

highly heritable traits or conditions, identical twins

who share the same genetic endowment display

marked differences. Identical twins, for example,

are concordant for schizophrenia in 46 percent of

pairs (NIMH, 1998), meaning that more than 50

percent of pairs are not concordant. Something yet

unknown about the environment protects against

the development of schizophrenia in genetically

identical individuals (Plomin, 1996).

How do nature and nurture interact? This

question cannot be directly answered by twin

studies. Animal models have proven to be fertile

ground for study of the mechanisms—at the

molecular 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 and function 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 developpment clearly involves interplay among these

influences. Understanding the process of development requires knowledge, ranging from the most

fundamental level—that of gene expression and
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62

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.

(()(

The field of public health has long recognized the

imperative of prevention to contain a major health

problem (IOM, 1988). The principles of prevention 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 development 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., 1995), 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 encephalomyelitis (measles invasion of the brain) in the

developed world. 


(

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
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63

from public health; it refers to interventions to

ward off the initial onset of a mental disorder.

Treatment refers to the identification of individuals

with mental disorders and the standard treatment

for those disorders, which includes interventions to

reduce the likelihood of future co-occurring

disorders. And maintenance refers to interventions

that are oriented to reduce relapse and recurrence

and to provide rehabilitation. (Maintenance

incorporates what the public health field

traditionally defines as some forms of secondary

and all forms of tertiary prevention.)

The Institute of Medicine’s new definitions of

prevention have been very important in

conceptualizing the nature of prevention activities

for mental disorders; however, the terms have not

yet been universally adopted by mental health

researchers. As a result, this report strives to use

the terms employed by the researchers themselves.

To avoid confusion, the report furnishes the

relevant definition along with study descriptions.

When the term “prevention” is used in this

report without 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. 

	


			


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; IOM,

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

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
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64

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 amenable 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).

	



	



Mental disorders are treatable, contrary to what

many think.12 An armamentarium of efficacious

treatments is available to ameliorate symptoms. In

12 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).
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65

fact, for most mental disorders, there is generally

not just one but a range of treatments of proven

efficacy. Most treatments fall under two general

categories, psychosocial and pharmacological.13

Moreover, the combination of the two—known as

multimodal therapy—can sometimes be even more

effective than each individually (see Chapter 3). 

The evidence for treatment being more effective

than placebo is overwhelming, as documented in

the main chapters of this report (Chapters 3 through

5). The degree of effectiveness tends to vary,

depending on the disorder and the target population

(e.g., older adults with depression). What is

optimal for one disorder and/or age group may not

be optimal for another. Further, treatments

generally need to be tailored to the client and to

client preferences. 

The inescapable point is that studies

demonstrate conclusively that treatment is more

effective than placebo. Placebo (an inactive form of

treatment) in both pharmacological and psychotherapy studies has a powerful effect in its own

right, as this section later explains. Placebo is more

effective than no treatment. Therefore, to capitalize

on the placebo response, people are encouraged to

seek treatment, even if the treatment is not as

optimal as that described in this report.

If treatment is so effective, then why are so few

people 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.

$"$

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 13 Other treatments are electroconvulsive therapy (Chapters 4 and 5) and

some types of surgery.
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66

understanding of the etiology of the problem.

Humanistic orientations aim toward increased selfunderstanding, 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, respectively. Psychodynamic, interpersonal, and cognitivebehavioral therapy are most commonly the focus of

treatment research reported throughout this report.

3V\FKRG\QDPLF 7KHUDS\

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 how 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.

%HKDYLRU 7KHUDS\

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 maladaptive 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.
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67

More recently, there has been a significant

addition to the interests and activities of behavior

therapists. Although behavior continued to be

important in relation to reinforcements, cognitions—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 cognitivebehavioral 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 selfdefeatist 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 cognitivebehavioral therapy rather than behavior therapy

(Kazdin, 1996). 

+XPDQLVWLF 7KHUDS\

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 clientcentered 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.
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68

! ' "

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. 

0HFKDQLVPV RI $FWLRQ

The mechanism of action refers to how a

pharmacotherapy interacts with its target in the

body to produce therapeutic effects. Pharmacotherapies 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
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69

serotonin reuptake inhibitors primarily block the

action 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  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-HT1–5-

HT7, and seven receptor subtypes, totaling 14

separate receptors (Schatzberg & Nemeroff, 1998).

The pace at which receptors are identified has

Table 2-9. Selected types of pharmacotherapies

Category and Class Example(s) of Clinical Use

Antipsychotics (neuroleptics)

Typical antipsychotics*

Atypical antipsychotics**

Schizophrenia, psychosis

Antidepressants

Selective serotonin

reuptake inhibitors

Tricyclic and heterocyclic

antidepressants***

Monoamine oxidase inhibitors

Depression, anxiety

Stimulants Attention-deficit/hyperactivity disorder

Antimanic

Lithium

Anticonvulsants

Thyroid supplementation

Mania

Antianxiety (anxiolytics)

Benzodiazepines

Antidepressants

-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
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70

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 neurotransmitter’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 neurotransmitters, both serotonin and norepinephrine

reuptake blockers have similar biochemical effects

after chronic dosing (Potter et al., 1985).

&RPSOHPHQWDU\ DQG $OWHUQDWLYH 7UHDWPHQW

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

maintaining mental health or treating mental

disorders. In many cases, preparations are not

standardized and consist of a variable 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 perforatum) 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.

!

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 between 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.

3ODFHER 5HVSRQVH

Recognized since antiquity, the placebo effect

refers to the powerful role of patients’ attitudes and

14 There are certainly exceptions to this general rule. Some

pharmacotherapies work as partial agonists and partial antagonists

simultaneously.
7KH )XQGDPHQWDOV RI 0HQWDO +HDOWK DQG 0HQWDO ,OOQHVV

71

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 pharmacological 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

group15 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.16

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).

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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,17 as are those in certain

settings, such as nursing homes. Newer, more

generalizable studies are being undertaken to

15 When it is unethical to deprive patients of treatment, such as the

case with AIDS, conventional treatment is given as the control.

16 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

psychological placebo or to another treatment” (Chambless et al.,

1998).

17 In March 1998, the NIH issued a policy guideline stating that

NIH-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. 
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

72

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 sideeffects in support of a treatment recommendation.

*DS %HWZHHQ (IILFDF\ DQG (IIHFWLYHQHVV

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 “efficacyeffectiveness 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),18 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.

%DUULHUV WR 6HHNLQJ +HOS

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

18 Having a second disorder increases the possibility of drug

interactions, which may translate into reduced dosing. Comorbidity

is discussed throughout this report.
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73

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). 

(()  (

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 de facto mental 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 general 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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

74

(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. Longterm 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.
7KH )XQGDPHQWDOV RI 0HQWDO +HDOWK DQG 0HQWDO ,OOQHVV

75

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.

		



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 translates 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 receive 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). 

	

		

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 treatment—known as “moral treatment”—was not given

until the very end of the 18th century, after the

Revolutionary War.
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76

Figure 2-5a. Annual prevalence of mentaVaddlctlve disorders and services for adults 

Percent of Population (28%) With 

MentaVAddictive Disorders 

{in one year) 

Diagnosis and 

No Treatment 

(20%) 

Percent of Population (15%} Receiving 

Mental Health Services* 

(in one year) 

Treatment and No Diagnosis, 

Other Mental Health Problem 

Inferred (7%) 

Diagnosis and Treatment (8%) 

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

Percent of Population (28%) With 

Men1ai/Addictive Disorders 

(In one year) 

Diagnosis and 

No Treatment 

(20%) 

Percent of Population (15%} Receiving 

Mental Health Services* 

(In one year) 

Percent of Population Receiving 

Specialty Care (6%) 

Percent of Population Receiving 

General Medical Care (5%) 

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 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 
7KH )XQGDPHQWDOV RI 0HQWDO +HDOWK DQG 0HQWDO ,OOQHVV

77

Figure 2-68. Annual prevalence of mantaVaddictive disorders and services far children 

P•cent of Papulation (21%) With 

MentaVAddictive Disorders 

(In one year) 

Diagnosis and 

No Treatment 

(11%) 

Percent of Population (21 %) Receiving 

Mental Health Services 

(In one year) 

Diagnosis and Treatment (1 0%) 

Treatment and No Diagnosis, 

Other Mental Health Problem 

Inferred (11 %) 

Figure :Hb. Annual prevalence of mentaL'addlctlve disorders and aervlcea for children 

Percent of Population (21%) WHh 

MentaL' Addictive Dlaordera 

(In one year) 

Diagnosis and 

No Treatment 

(11%) 

Percent of Population (21%) Receiving 

Mental Health Services 

I (In one year) 

Percent of Population Receiving 

Specialty Care (8%) 

Percent of Population Re1~i\1ina 

General Medical 

Percent of Population 

ReceMng School 

Services (11 %) 

** 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 
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78

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 psychosocial 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 therapy19 (Grob, 1994). The “moral treatment” 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 exposés revealed

inhuman conditions both in asylums and local

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 “mental hygiene” 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

19 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).
7KH )XQGDPHQWDOV RI 0HQWDO +HDOWK DQG 0HQWDO ,OOQHVV

79

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 institutional 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 (1975–present),

called the “community support” movement, grew

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

 Reform Movement Era Setting Focus of Reform

Moral Treatment 1800%1850 Asylum Humane, restorative treatment

Mental Hygiene 1890%1920 Mental hospital and clinic Prevention, scientific

orientation

Community Mental Health 1955%1970 Community mental health center Deinstitutionalization,

social integration

Community Support 1975%present Community support Mental illness as a social welfare

problem (e.g., housing, employment)

Sources: Morrissey & Goldman, 1984; Goldman & Morrissey, 1985
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80

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 antipsychotic 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

1970s, 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, discrimination, and the

stigma about mental illness, which is one of the

factors that impedes help-seeking behavior.

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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 1970s, 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 ease 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
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81

culture, shaped by research primarily on white,

European populations. 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 changing demographics, and to define the

term “culture” and its consequences for the mental

health system.

*  
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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

racial or ethnic minorities and considerable

diversity within each of the 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 the 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,21 gender, age,

class, religious/spiritual beliefs, sexual

orientation22, 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

20 The term “Latino(a)” refers to all persons of Mexican, Puerto

Rican, Cuban, or other Central and South American or Spanish

origin (CMHS, 1998).

21 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.

22 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).
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82

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.

&RSLQJ 6W\OHV

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 wellbeing, 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

23 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).
7KH )XQGDPHQWDOV RI 0HQWDO +HDOWK DQG 0HQWDO ,OOQHVV

83

with death, suffering, pain, injustice, tragedy, and

stressful experiences in the life of an individual or

family (Pargament, 1997). In the family/community-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 Latino

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 International 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.


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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 (del 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
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84

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 gettogethers 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).

(SLGHPLRORJ\ DQG 8WLOL]DWLRQ RI 6HUYLFHV

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 understanding 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 utilization are discussed in a later section. 

$IULFDQ $PHULFDQV

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 overrepresented in public inpatient psychiatric care in

relation to whites (Snowden & Cheung, 1990;

24 In spring 2000, survey field work begins on an NIMH-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.
7KH )XQGDPHQWDOV RI 0HQWDO +HDOWK DQG 0HQWDO ,OOQHVV

85

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 community-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-forservice 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, 1998).

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.

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).

$VLDQ $PHULFDQV3DFLILF ,VODQGHUV

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 services. These phenomena are more pronounced for

recent immigrants (Sue et al., 1994).

25 African Americans are overrepresented among persons

undergoing involuntary civil commitment (Snowden, in press-b).
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

86

+LVSDQLF $PHULFDQV

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 U.S. 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).

1DWLYH $PHULFDQV

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).

%"!

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.

+HOS6HHNLQJ %HKDYLRU

Among adults, the evidence is considerable that

persons from minority backgrounds are less likely

than are whites to 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).

0LVWUXVW

The reasons why racial and ethnic minority groups

are less apt to seek help appear to be best studied
7KH )XQGDPHQWDOV RI 0HQWDO +HDOWK DQG 0HQWDO ,OOQHVV

87

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,

1991). 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.

Those 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).

6WLJPD

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 and 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.

&RVW

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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

88

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.

&OLQLFLDQ %LDV

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.

!"('!$

-"

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 preversus 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).

(WKQRSV\FKRSKDUPDFRORJ\

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
7KH )XQGDPHQWDOV RI 0HQWDO +HDOWK DQG 0HQWDO ,OOQHVV

89

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 drugmetabolizing enzymes. Each drug-metabolizing

enzyme normally breaks down not just one type of

pharmacotherapy, 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 overmedication of antipsychotic drugs in African Americans

can yield very uncomfortable extrapyramidal26 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).

Psychosocial factors also can play an important

role in ethnic variation. Compliance 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.

0LQRULW\2ULHQWHG 6HUYLFHV

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

26 Dystonia (brief or prolonged contraction of muscles), akathisia

(an urge to move about constantly), or parkinsonism (tremor and

rigidity) (Perry et al., 1997).
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

90

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 Alcoholism/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 selfdetermination 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.

&XOWXUDO &RPSHWHQFH

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 behaviors, 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
7KH )XQGDPHQWDOV RI 0HQWDO +HDOWK DQG 0HQWDO ,OOQHVV

91

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 environments 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., communication, 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. 

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 fullfledged and appropriate response to racial and

ethnic differences in the provision of mental health

care. 
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92

   (

The differences between rural and urban communities 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 telecommunications 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.

(()!*
! $

(!

Since the late 1970s, 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
7KH )XQGDPHQWDOV RI 0HQWDO +HDOWK DQG 0HQWDO ,OOQHVV

93

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 “survivors”

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.

'*- !-"

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

exposés 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 (Grob, 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

1950s, increasing numbers of former patients of

mental hospitals began to forge informal ties in the

community. By the 1960s, the civil rights movement 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 selfdetermination 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 electroconvulsive 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 & del 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
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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, selfmanaged 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 Patients27 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.

6HOI+HOS *URXSV

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 1970s, 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

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 selfhelp 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). 

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

& del 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). 27 Later renamed the National Association of Psychiatric Survivors

(Chamberlin, 1995).
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!" !!

'.

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

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
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Medicine and Committee for the Study of the

Future of Public Health (1988).


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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).

NAMI 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).

NAMI 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

improved 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 NAMI goal is to

transform public attitudes and reduce stigma by

emphasizing the biological basis of serious mental

disorders, as opposed to poor parenting (Frese,

1998; NAMI, 1999). Correspondingly, NAMI

advocates for intensification of research in the

neurosciences. Through state and local affiliates,

NAMI operates a network of family groups for selfhelp 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. NAMI 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, NAMI 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
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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.

	


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 selfperceptions. 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.


	

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
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expression from outside the confines of the

institution. Deinstitutionalization, the emergence of

community supports and psychosocial rehabilitation, 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 consumer 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 catastrophic 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 refers to the “lived experience”

of gaining a new and valued sense of self and of

purpose (Deegan, 1988).

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The impact of the recovery concept is felt most by

consumers and families. Consumers and families

are energized by the message of hope and selfdetermination. Having more active roles in

Recovery is a process, a way of life, an attitude,

and a way of approaching the day’s challenges. It

is not a perfectly linear process. At times our

course is erratic and we falter, slide back, regroup

and start again. . . .The need is to meet the

challenge of the disability and to re-establish a

new and valued sense of integrity and purpose

within and beyond the limits of the disability; the

aspiration 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 independently, learn skills, 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 self (Long, 1994, p. 4). 

To return renewed with an enriched perspective of

the human condition is the major benefit of

recovery. To return at peace, with yourself, your

experience, your world, and your God, is the major

joy of recovery (Granger, 1994, p. 10).

Figure 2-7. Definitions of recovery from

consumer writings
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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 wellbeing 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-powerlessness ; (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
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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.”

 

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 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. 

Effective 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 opportunity—to discover, for

example, what specific properties of a neural

circuit might make it receptive to a 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 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
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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, costeffectiveness, and “deliverability” of interventions

and the design—including economic considerations—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

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:

 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. 
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 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

experiences 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 treatments—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) 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

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. 

  *  

"

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—
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103

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
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104

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 associated 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 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 supporting the increasingly more prominent role

that families are assuming in caring for older,

mentally impaired and mentally ill family members.



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Normal Development . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 124

Theories of Development . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 124

Development Viewed as a Series of Stages . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 125

Intellectual Development . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 125

Behavioral Development . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 125

Social and Language Development . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 125

Parent-Child Relationships . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 125

Origins of Language . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 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

Risk Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 129

Biological Influences on Mental Disorders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 129

Psychosocial Risk Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 130

Family and Genetic Risk Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 131

Effects of Parental Depression . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 131

Stressful Life Events . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 131

Childhood Maltreatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 132

Peer and Sibling Influences . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 132

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

Prevention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 132

Project Head Start . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 133

Carolina Abecedarian Project . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 134

Infant Health and Development Program . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 134
 

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

Evaluation Process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 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

Side Effects . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 146

Other Medications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 147

Psychosocial Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 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
 

Depression and Suicide in Children and Adolescents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 150

Conditions Associated With Depression . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 151

Prevalence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 151

Major Depression . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 151

Dysthymic Disorder . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 152

Suicide . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 152

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

Causes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 153

Family and Genetic Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 153

Gender Differences . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 153

Biological Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 153

Cognitive Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 154

Risk Factors for Suicide and Suicidal Behavior . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 154

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

Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 155

Depression . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 155

Psychosocial Interventions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 155

Pharmacological Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 156

Bipolar Disorder . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 157

Pharmacological Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 157

Suicide . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 157

Psychotherapeutic Treatments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 157

Psychopharmacological Treatments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 158

Intervention After a Suicidal Death of a Relative, Friend, or Acquaintance . . . . . . . . 158

Community-Based Suicide Prevention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 159

Crisis Hotlines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 159

Method Restriction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 159

Media Counseling . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 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

Anxiety Disorders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 160
 

Separation Anxiety Disorder . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 160

Generalized Anxiety Disorder . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 161

Social Phobia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 161

Treatment of Anxiety . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 162

Obsessive-Compulsive Disorder . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 162

Autism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 163

Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 163

Disruptive Disorders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 164

Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 166

Substance Use Disorders in Adolescents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 166

Eating Disorders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 167

Services Interventions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 168

Treatment Interventions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 168

Outpatient Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 168

Partial Hospitalization/Day Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 169

Residential Treatment Centers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 169

Inpatient Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 171

Newer Community-Based Interventions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 172

Case Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 172

Team Approaches to Case Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 174

Home-Based Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 175

Family Preservation Programs Under the Child Welfare System . . . . . . . . . . . . . . . . 175

Multisystemic Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 175

Therapeutic Foster Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 176

Therapeutic Group Homes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 177

Crisis Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 178

Service Delivery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 179

Service Utilization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 180

Utilization in Relation to Need . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 180

Early Termination of Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 180

Poverty and Utilization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 181

Culture and Utilization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 181
 

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

Private Sector . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 182

Public Sector . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 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

Family Support Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 189

Practical Support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 190

Integrated System Model . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 190

Effectiveness of Systems of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 191

The Fort Bragg Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 191

The Stark County Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 192

Summary: Effectiveness of Systems of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 193

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

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 194
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123

	






Spanning 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 adolescents, 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 3-1). When diagnostic criteria
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

124

Table 3-1. Children and adolescents age 9–17 with

mental or addictive disorders, combined

MECA sample, 6-month (current) 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., 1996a

required the presence of significant functional impairment, 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 underestimates 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. 

	
		


Development is the lifelong process of growth, maturation, 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.

			
		


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
&KLOGUHQ DQG 0HQWDO +HDOWK

125

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.

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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 Erikson’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. 

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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 (Bidell

& Fischer, 1992). 

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Other approaches to understanding development are

less focused on the stages of development. 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 (cognitivebehavioral therapy). Both treatment approaches are

used effectively with children and adolescents.

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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 attachment 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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

126

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 substanceabusing 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. 

2ULJLQV RI /DQJXDJH

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 attempted to explain the

relations between language and cognitive development

(Vygotsky, 1962; Chomsky, 1965, 1975, 1986; Bruner,

1971; Luria, 1971), 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.

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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
&KLOGUHQ DQG 0HQWDO +HDOWK

127

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. 



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 characteristics 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

& 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. 

#!#

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0HQWDO +HDOWK DQG ,OOQHVV

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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

128

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 “selfrighting” 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 researchbased 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. 
&KLOGUHQ DQG 0HQWDO +HDOWK

129

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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. 

&'

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 from exposure to

alcohol, illegal drugs, and tobacco; low birth weight;

difficult temperament or an inherited predisposition to

a mental disorder; external risk factors such as poverty,

deprivation, abuse and neglect; unsatisfactory relationships; parental mental health disorder; or exposure to

traumatic events. 

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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 several disorders in particular, 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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

130

that a number of biologic risk factors exert important

effects on brain structure and function and increase the

likelihood of subsequently developing mental disorders. These well-established factors include intrauterine 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. 

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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

IJzendoorn 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 longterm study of such highly reactive, behaviorally

inhibited infants and toddlers has shown that they are

excessively shy and avoidant in early childhood 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 IJzendoorn 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). 
&KLOGUHQ DQG 0HQWDO +HDOWK

131

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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).

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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 &

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. 

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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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

132

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).

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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).

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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. 

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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 combinations 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.



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
&KLOGUHQ DQG 0HQWDO +HDOWK

133

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,

young children, adolescents, and/or their caregivers,

addressing the risk factors described above. 

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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-week comprehensive 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 (1971),

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 (BerrentoClement 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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

134

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 accompany Head Start programs (Zigler & Styfco, 1993).

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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 preventionoriented intervention program delivered in a day care

setting from infancy to age 5 (Campbell & Ramey,

19941

). 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

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.

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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., 19972

). The 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.

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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 socioeconomic level. There were four study groups to which

1

 Also see Ramey et al., 1984; Ramey & Campbell, 1984; Horacek

et al., 1987; Martin et al., 1990.

2

 Also see IHDP, 1990; Ramey et al., 1992; Brooks-Gunn et al.,

1994a, 1994b; Casey et al., 1994.

3

 Also see Olds et al., 1986a, 1986b, 1988, 1993, 1994a, 1994b,

1995, and 1997.
&KLOGUHQ DQG 0HQWDO +HDOWK

135

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). Nursevisited 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

$1,582 per family, but for low-income families, the cost

of the program was recovered with a dividend of $180

per family.

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 pregnancies, 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.

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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. 

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 program evaluation

studies, including several at the state level, underscore
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136

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.

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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 schooland 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.

	





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 interaction 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 development, 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. 



	

	



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; attentiondeficit and disruptive behavior disorders; autism and

other pervasive developmental disorders; eating

disorders (e.g., anorexia nervosa); elimination disorders
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Table 3-2. Selected mental disorders of childhood and

adolescence from the DSM-IV

& 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.g., enuresis, encopresis); learning and communication disorders; mood disorders (e.g., major depressive 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

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).

	



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
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138

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 1980s, 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 manifestations, 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 DSMIV. 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.

"

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 understanding 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, appropriately 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.
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139

Some of the questionnaires that specifically address

mood disorders are shown in Figure 3-1. Other questionnaires, such as the Adolescent Antisocial SelfReport 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 Personality 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.

!

Children and adolescents receive most of the traditional

treatments described in Chapter 2, particularly psychosocial treatments, such as psychotherapies, and various

medications. Specific psychosocial and pharmacological 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 similar to clinical work with

adults. Many of the treatment interventions have been

“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 (Kearney & 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

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

Title Source

The Children’s Depression Inventory

(CDI)

Beck Depression Inventory

(BDI)

Reynolds Adolescent Depression Scale

(RADS)

Children’s Depression Scale

(CDS)

Center for Epidemiological Studies of Depression

(CES-D)

Kandel Depression Scale

(KDS)

Zung Self-Rating Depression Scale

(SDS)

Diagnostic Interview Schedule for Children

(DISC)

Kovacs, 1985

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

Reynolds, 1986

Tisher & Lang, 1983

Radloff, 1977

Kandel & Davies, 1982

Zung, 1965

Shaffer & Fisher, 1998
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140

gap between research and clinical practice is discussed

in greater depth elsewhere in this chapter and in

Chapter 2.

3V\FKRWKHUDS\

The major types of psychotherapy for children are

supportive, psychodynamic, cognitive-behavioral, interpersonal, 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 Efficacious Psychosocial Interventions (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 wellestablished 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). 

3V\FKRSKDUPDFRORJ\

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.
&KLOGUHQ DQG 0HQWDO +HDOWK

141

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, pharmaceutical companies have fewer financial incentives to

conduct expensive and methodologically demanding

studies with children, to whom drugs may be given

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. 

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). 

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 from rigorously

controlled trials is sparse or altogether absent (see

Figure 3-2). Further, only in the area of ADHD is information 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 psychopharmacology that is focusing on differential efficacy

and speed of onset of these categories of psychotropics,
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142

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. 

)*##

 

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 assignments; they appear not to listen when spoken to and

often fail to follow through on tasks (DSM-IV; Waslick

& Greenhill, 1997).

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

Level of Supporting Data

Estimated

Frequency

of Use

Category Indication

Short-Term

Efficacy

Long-Term

Efficacy

Short-Term

Safety

Long-Term

Safety Rank

Stimulants ADHD A B A A 1

Selective Serotonin

 Reuptake Inhibitors

Major depression

OCD

Anxiety disorders

B

A

C

C

C

C

A

A

C

C

C

C

2

Central Adrenergic

 Agonists

Tourette syndrome

ADHD

B

C

C

C

B

C

C

C 3

Valproate and

 Carbamazepine

Bipolar disorders

Aggressive conduct

C

C

C

C

A

A

A

A 4

Tricyclic

 Antidepressants

Major depression

ADHD

C

B

C

C

B

B

B

B 5

Benzodiazepines Anxiety disorders C C C C 6

Antipsychotics Childhood schizophrenia

 and psychoses

Tourette syndrome

B

A

C

C

C

B

B

B

7

Lithium Bipolar disorders

Aggressive conduct

B

B

C

C

B

C

C

C 8

Key: A = > 2 randomized controlled trials (RCTs).

B = At least 1 RCT.

C = Clinical opinion, case reports, and uncontrolled trials.

Source: Jensen et al., 1999
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143

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

A. 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:

Inattention

(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 not 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 difficulty 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) often loses things necessary for tasks or activities (e.g., toys, school assignments, pencils, books, or

tools)

(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 maladaptive 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

Impulsivity

(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)

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).

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).
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144

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.5

3UHYDOHQFH

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).

&DXVHV

The exact etiology of ADHD is unknown, although

neurotransmitter deficits, genetics, and perinatal

complications have been implicated. In the early postWorld War II years, a number of pediatricians,

neurologists, and child psychiatrists noted that braindamaged children were often hyperactive (Strauss &

Lehtinen, 1947; Eisenberg, 1957; Laufer & Denhoff,

1957). These observations led to the diagnostic concept

of “minimal brain damage” (Wender, 1971), which was

thought to be characterized by hyperactivity, inattention, learning difficulties, and a wide variety of

behavior problems. However, large epidemiological

studies (Rutter & Quinton, 1977) of grossly braindamaged children with cerebral palsy, epilepsy, and so

5

 Taylor, 1994; Cantwell, 1996; Waslick & Greenhill, 1997;

Barkley, 1998; and NIH Consensus Statement 110, 1998.
&KLOGUHQ DQG 0HQWDO +HDOWK

145

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

(DAT1) 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

(DAT1) 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). 
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

146



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, 1991). 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. 

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3V\FKRVWLPXODQWV

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 separate

psychostimulant medications consistently reduce the

core features of ADHD in literally hundreds of

randomized controlled trials: methylphenidate, dextroamphetamine, 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. Administration 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

effects were found on learning and school achievement

(see reviews by Barkley, 1990; Pelham, 1993; Swanson

et al.,1993, 1995b; Greenhill et al., 1998; Cantwell,

1996a; Spencer et al., 1996.) However, psychostimulants 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., 1991; 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).

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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).

6LGH (IIHFWV

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
&KLOGUHQ DQG 0HQWDO +HDOWK

147

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. 

2WKHU 0HGLFDWLRQV

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).

3V\FKRVRFLDO 7UHDWPHQW

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 medication 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.

%HKDYLRUDO $SSURDFKHV

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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

148

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 schoolbased 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.

&RJQLWLYH%HKDYLRUDO 7KHUDS\

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).

3V\FKRHGXFDWLRQ

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 Children and Adults with

Attention Deficit Disorder (CHADD) and the National

Attention Deficit Disorder Association can be helpful

sources of information and support for families.

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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 14-month

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
&KLOGUHQ DQG 0HQWDO +HDOWK

149

treatment alone or the control treatment. Notably, the

combined treatment resulted in significant improvement 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 control 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.

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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

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).
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

150

6DIHW\ RI /RQJ7HUP 6WLPXODQW 8VH

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 methylphenidate 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).

 "  

  

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
&KLOGUHQ DQG 0HQWDO +HDOWK

151

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 mania 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

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.

  +

Roughly two-thirds of children and 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 cooccurrence 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).



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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 1-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

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.
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

152

percent) (Anderson & McGee, 1994; Lewinsohn et al.,

1994a; Garrison et al., 1997; Kessler & Walters, 1998).

For purposes of comparison, 1-year prevalence in

adults is about 5.3 percent (Murphy et al., 1988;

Rorsman et al., 1990; Regier et al., 1993). 

'\VWK\PLF 'LVRUGHU

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 & Klerman, 1977; McGee et al., 1990;

Linehan et al., 1993). 

6XLFLGH

In 1996, the age-specific mortality rate from suicide

was 1.6 per 100,000 for 10- 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

1960s, the reported suicide rate among 15- to 19-yearold males increased threefold but remained stable

among females in that age group and among 10- 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 rise 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 Australia, and in New

Zealand, where suicide by firearms is rare.

" 
"#

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 (Harrington et al., 1990; Asarnow et al., 1994) and living in

conflict-ridden families (Asarnow 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).
&KLOGUHQ DQG 0HQWDO +HDOWK

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 depression 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).

"

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.

)DPLO\ DQG *HQHWLF )DFWRUV

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,

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). 

*HQGHU 'LIIHUHQFHV

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 (NolenHoeksema & Girgus, 1994). The higher prevalence,

therefore, could be a result of greater vulnerability,

combined with coping mechanisms different than those

of boys.

%LRORJLFDO )DFWRUV

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 hyperthyroidism, 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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

154

association between abnormal serotonin metabolism

and suicidal behavior in children and adolescents.

&RJQLWLYH )DFWRUV

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 currently 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 permanent 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 (Rholes 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 (Overholser et al., 1995).

5LVN )DFWRUV IRU 6XLFLGH DQG 6XLFLGDO %HKDYLRU

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 predispose 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 12-fold. 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
&KLOGUHQ DQG 0HQWDO +HDOWK

155

enforcement agency; a ruptured relationship with a

boyfriend or a girlfriend; or a fight among friends.7

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 parent-child 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).

,"

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 al., 1997a), presumably

because of the longer duration of depression in

dysthymic disorder, which is also a prime risk factor

for suicide. In a 10- to 15-year 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). 



'HSUHVVLRQ

3V\FKRVRFLDO ,QWHUYHQWLRQV

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 a comprehensive 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.

7

 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).
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

156

In studies that focused on relieving symptoms of

depression in preadolescents, only one form of CBT

met the criteria for a probably effective 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 interventions 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 efficacious. 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 wellestablished status, as defined by the American Psychological Association Task Force, the intervention has to

be studied by another team of investigators—which has

not as yet been done.

3KDUPDFRORJLFDO 7UHDWPHQW

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 placebocontrolled 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
&KLOGUHQ DQG 0HQWDO +HDOWK

157

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. 

%LSRODU 'LVRUGHU

3KDUPDFRORJLFDO 7UHDWPHQW

The treatment of bipolar disorder entails treating

symptoms of both depression and mania. For decades,

lithium has been the well-researched mainstay

treatment for mania in 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,

including valproate, carbamazepine, methylphenidate,

and low-dose chlorpromazine (Campbell & Cueva,

1995; Geller & Luby, 1997).

6XLFLGH

3V\FKRWKHUDSHXWLF 7UHDWPHQWV

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 (Kernberg, 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 reattribution 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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

158

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 (RotheramBorus 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 approaches to reduce the extent of expressed anger may be

helpful in lowering risk for suicidal behavior in

children and adolescents (Fristad et al., 1996).

3V\FKRSKDUPDFRORJLFDO 7UHDWPHQWV

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; Wernicke 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 placebocontrolled, methodologically appropriate studies of

tricyclic antidepressants have failed to find 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). 

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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-
&KLOGUHQ DQG 0HQWDO +HDOWK

159

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.

&RPPXQLW\%DVHG 6XLFLGH 3UHYHQWLRQ

The principal public health approaches to suicide

prevention have been (1) crisis hotlines8

; (2) restrictions 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. 

&ULVLV +RWOLQHV

Although crisis hotlines are available almost everywhere in the United States, research has failed to show

that they reduce the incidence of suicide (Bleach &

Clairborn, 1974; Apsler & Hodas, 1976; Miller et al.,

1984; Shaffer et al., 1990a, 1990b). 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

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.

0HWKRG 5HVWULFWLRQ

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.

0HGLD &RXQVHOLQJ

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.

,QGLUHFW &DVH)LQGLQJ 7KURXJK (GXFDWLRQ

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 (Spirito et al., 1988; Shaffer et al., 1991;

Vieland et al., 1991). On the other hand, there is

evidence that previously suicidal adolescents are upset 8

 Crisis hotlines are only one of the services offered through crisis

services, a topic discussed subsequently.
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

160

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 casefinding and to carry with them an unjustified risk of

activating suicidal thoughts.

'LUHFW &DVH)LQGLQJ

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) depression; 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).

$JJUHVVLYH 7UHDWPHQW RI 0RRG 'LVRUGHUV

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.

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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.9

$  

  

-# 

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., 1996). The 1-year

prevalence in children ages 9 to 17 is 13 percent (Table

3-1). 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.

6HSDUDWLRQ $Q[LHW\ 'LVRUGHU

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.

9

 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)
&KLOGUHQ DQG 0HQWDO +HDOWK

161

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 overdiagnosed 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.

*HQHUDOL]HG $Q[LHW\ 'LVRUGHU

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

their performance and their anxieties (DSM-IV). The 1-

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.

6RFLDO 3KRELD

Children with social phobia (also 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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

162

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. 

7UHDWPHQW RI $Q[LHW\

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 management10 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 efficacious for treating

phobias: systematic desensitization11; modeling, based

on research by Bandura and colleagues, which

capitalizes on an observational learning technique

(Bandura, 1971; see also Chapter 2); and several cognitive-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 Force as

probably efficacious. 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 CBT, which enhanced reduction in posttreatment anxiety disorder significantly compared with

CBT alone (Barrett et al., 1996). However, none of the

interventions identified above as well-established or

probably efficacious has, for the most part, been tested

in real-world settings.

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 nor benzodiazepines have been

shown to be more effective than placebo in children

(Klein et al., 1992; Bernstein et al., 1998). 

2EVHVVLYH&RPSXOVLYH 'LVRUGHU

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).

10 Contingency management attempts to alter behavior by

manipulating its consequences through the behavioral principles of

shaping, positive reinforcement, and extinction.

11 A technique that trains people to “unlearn” fears by presentation

of fearful stimuli along with nonfearful stimuli.

12 This refers to understanding how cognitions are being distorted.
&KLOGUHQ DQG 0HQWDO +HDOWK

163

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 Neuropsychiatric 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 (Flament

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. Cognitivebehavioral treatments also have been used to treat OCD

(March et al., 1997), but the evidence is not yet

conclusive.

"

Autism, the most common of the pervasive developmental 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

extremely high research priority for the National

Institute of Mental Health (NIMH, 1998). 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).

7UHDWPHQW

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. 13 Basal ganglia are groups of neurons responsible for motor and

impulse control, attention, and regulation of mood and behavior.
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

164

Thirty years of research demonstrated the efficacy

of applied behavioral methods in reducing inappropriate behavior and in increasing communication,

learning, and appropriate social behavior. A welldesigned 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 shortterm 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, preliminary studies of

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 firm conclusions can be

drawn about any possible advantages in safety and

efficacy over traditional agents. 

" 

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 also frequently found

in children who suffer from attention-deficit/hyperactivity 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). 14 Dyskinesia is an impairment of voluntary movement, such that it

becomes fragmentary or incomplete.
&KLOGUHQ DQG 0HQWDO +HDOWK

165

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

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 rejection, 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, attentiondeficit/hyperactivity disorder, fearlessness and stimulation-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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

166

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). 

7UHDWPHQW

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 onethird 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 wellestablished treatment and 10 for probably efficacious

treatment. Two well-established treatments, both directed at training parents, succeeded in reducing

problem behaviors. The two treatments were a parent

training program based on the manual Living With

Children (Bernal 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 efficacious 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, methylphenidate 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). 

"./  

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
&KLOGUHQ DQG 0HQWDO +HDOWK

167

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 51 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 crosssectional 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 familyoriented 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 are serious, sometimes lifethreatening, 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 bingeeating disorder (Becker et al., 1999). Binge-eating

disorder is a newly recognized condition featuring

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 et 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 comorbid mental disorders also is

important, as is treatment of medical complications.

There are some controlled studies of the efficacy of

specific treatments for adults with bulimia and bingeeating 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 adult

women found conflicting evidence of benefit from

antidepressants for anorexia and some reduction in the

frequency of binge eating and purging with tricyclic

antidepressants, monoamine oxidase inhibitors, and

SSRIs (see Jimerson et al., 1993; Jacobi et al., 1997).

Studies mostly of adult women find cognitivebehavioral therapy and interpersonal therapy to be

effective for bulimia and binge-eating disorder
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168

(Fairburn 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).







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.

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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 (Burns 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 metaanalyses. 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
&KLOGUHQ DQG 0HQWDO +HDOWK

169

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.

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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

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 improving family functioning.

Findings from uncontrolled studies of partial

hospitalization are informative, although not conclusive. 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).

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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 onefourth of the national outlay on child mental health is

spent on care in these settings (Burns et al., 1998).
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170

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 communitybased 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 longterm 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 (ReEd). Project Re-Ed, a model of residential treatment

developed in the 1960s, focuses on training teachercounselors, 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 ReEd 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
&KLOGUHQ DQG 0HQWDO +HDOWK

171

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 maintenance 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 7-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

to identify those groups of children and adolescents for

whom the benefits of residential care outweigh the

potential risks. 

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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-1990s, 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

(Burns, 1991), 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 (Singh 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 randomized 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. 
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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).


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Since the 1980s, the field of children’s mental health

has witnessed a shift from institutional to communitybased 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 interventions, 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 Federal 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 DSMIII-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).

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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.

15 This definition is also used with newer diagnostic systems, such

as DSM-IV.
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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 (Burns & 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.
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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 1-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 FamilyBased 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

(FIAP) 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 131 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 31⁄2-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 (Burns &

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
&KLOGUHQ DQG 0HQWDO +HDOWK

175

needed in order to proceed with efficient and reliable

controlled research in this area. In addition, future

research needs to address the issue of costeffectiveness, as some evidence presented above has

shown savings from less utilization of institutional care.

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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). Homebased 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, familybased services, or intensive family services.

Stroul (1988) identified three major goals of homebased 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.

The findings are presented below according to their

organizational sponsorship by either child welfare or

juvenile justice system.

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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 Utah (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).

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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
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176

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. 

7KHUDSHXWLF )RVWHU &DUH

Therapeutic foster care is considered the least

restrictive form of out-of-home therapeutic placement

for children with severe emotional 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
&KLOGUHQ DQG 0HQWDO +HDOWK

177

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 outof-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.

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.

7KHUDSHXWLF *URXS +RPHV

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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

178

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 returned more

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-term outcomes 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 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-post16 designs. Positive

behavioral and adjustment outcomes for youth

presenting to crisis programs and emergency

departments across the country were reported in all of

16 Pre-post design: a research design in which a measure is

compared on the same individual research subjects before and after

an intervention.
&KLOGUHQ DQG 0HQWDO +HDOWK

179

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 a mobile

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 shortterm, 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 costeffectiveness as well as an exploration of the

integration of crisis services into systems of care.

#

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 services; 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. 
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

180

/1

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.

8WLOL]DWLRQ LQ 5HODWLRQ WR 1HHG

The conclusion that a high proportion of young people

with a diagnosable mental disorder do not receive any

mental health services at all (Burns 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

(Burns 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 Burns 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 (Burns

et al., 1995). After reviewing these findings and the

findings from other studies, Hoagwood and Erwin

(l997) also concluded that schools were the primary

providers of mental health services for children.

(DUO\ 7HUPLQDWLRQ RI 7UHDWPHQW

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., l996). Offering

services in the schools improves treatment access

(Catron & Weiss, 1994). A variety of case management

approaches can also improve engagement of lowincome families in the treatment of their children

(Burns et al., 1996; Koroloff et al., 1996a; Lambert &

Guthrie, 1996).
&KLOGUHQ DQG 0HQWDO +HDOWK

181

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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 system live

in poverty.

&XOWXUH DQG 8WLOL]DWLRQ

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 familyinitiated 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

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/Latino 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/Latino 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
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182

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 culturefocused 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, IsaacsShockley 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; Hernandez & Isaacs, 1998).

# '!

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.

3ULYDWH 6HFWRU

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-forservice 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
&KLOGUHQ DQG 0HQWDO +HDOWK

183

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. 

3XEOLF 6HFWRU

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, and child 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.

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

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 lowincome, 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.

Under the Federal special education law, the

Individuals with Disabilities Education Act17 (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,

17 Public Law 94-142; Public Law 101-476; Public Law 105-17.
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184

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.

&KLOGUHQ 6HUYHG E\ WKH 3XEOLF 6HFWRU

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., l995;

Duchnowski et al., l998; Greenbaum et al., l998; Quinn

& Epstein, l998).

It is estimated that in a 1-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 21 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, l995; 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., l998).
&KLOGUHQ DQG 0HQWDO +HDOWK

185

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, l986; Cohen et al., l990;

Greenbaum et al., 1991, l998; Otto et al., l992; 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 System Model).

0DQDJHG &DUH LQ WKH 3XEOLF 6HFWRU

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

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 capitated18 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

18 Capitation: a fixed sum per individual per month.
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186

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”19 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, afterschool 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.

""#"



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

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; Hernandez 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 networks 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/Latino

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 19 Carve-out: separation of funding for mental health services and

their management from those of general health.
&KLOGUHQ DQG 0HQWDO +HDOWK

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Hispanic/Latino 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).

" '

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

(Friesen & 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 decades, 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 and colleagues (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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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.

1HZ 5ROHV IRU )DPLOLHV LQ 6\VWHPV RI &DUH

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 onthe-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 Mentally Ill, and other

family-run consumer organizations.

)DPLO\ 6XSSRUW

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).
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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

diagnoses, such as conduct disorder (see section on

Selected Mental Disorders in Children).

)DPLO\ 6XSSRUW *URXSV

The primary focus of family support groups is to

provide information and emotional support to members

who 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 sixsession 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 (selfefficacy). A training curriculum for parents was tested

in a randomized controlled trial involving more than
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190

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).

3UDFWLFDO 6XSSRUW

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 inhome 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).


! # 

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., l996a, 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
&KLOGUHQ DQG 0HQWDO +HDOWK

191

care to meet the needs of approximately 6.3 million

children and adolescents with serious emotional

disturbance and their families. The program now

supports 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 system of 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 multiagency 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 crosssite 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).

#

The previous sections have highlighted the transformations that have taken place since the early 1980s

to create comprehensive, interagency, communitybased 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).

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 placements 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 evaluation, Bruns, Burchard, and

Yoe (l995) conclude that “initial findings are encouraging, 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; Santarcangelo et al., 1998).

Reviews (Stroul, 1993a, l993b; Rosenblatt, l998) 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).

7KH )RUW %UDJJ 6WXG\

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
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192

achieved if a wide range of individualized and familycentered 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 intermediatelevel 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 (emotionalbehavioral 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 & Burns, 1996; Behar, 1997;

Feldman, 1997; Hoagwood, 1997; Lourie, 1997; Pires,

1997; Saxe & Cross, 1997; Sechrest & 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 communitybased 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. 

7KH 6WDUN &RXQW\ 6WXG\

The shift in focus to the practice level is being reinforced 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 healthfunded 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
&KLOGUHQ DQG 0HQWDO +HDOWK

193

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. 

	







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.



 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 impairment.”

 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

mental disorders and improving social and

emotional development by providing, for example,

educational programs for young children, parenteducation programs, and nurse home visits.

 6. A range of efficacious psychosocial and

pharmacologic treatments exists for many mental

disorders in children, including attentiondeficit/hyperactivity 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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

194

services. Culturally appropriate services have been

designed but are not widely available.



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Chapter Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 225

Mental Health in Adulthood . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 227

Personality Traits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 227

Self-Esteem . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 228

Neuroticism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 229

Avoidance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 229

Impulsivity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 229

Sociopathy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 229

Stressful Life Events . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 230

Past Trauma and Child Sexual Abuse . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 231

Domestic Violence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 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

Specific Phobias . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 235

Social Phobia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 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
 

Treatment of Anxiety Disorders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 241

Counseling and Psychotherapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 241

Pharmacotherapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 242

Benzodiazepines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 242

Antidepressants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 242

Buspirone . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 243

Combinations of Psychotherapy and Pharmacotherapy . . . . . . . . . . . . . . . . . . . . . . . . . . . 243

Mood Disorders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 244

Complications and Comorbidities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 244

Clinical Depression Versus Normal Sadness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 245

Assessment: Diagnosis and Syndrome Severity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 245

Major Depressive Disorder . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 246

Dysthymia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 246

Bipolar Disorder . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 246

Cyclothymia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 251

Differential Diagnosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 251

Etiology of Mood Disorders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 251

Biologic Factors in Depression . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 251

Monoamine Hypothesis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 252

Evolving Views of Depression . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 252

Anxiety and Depression . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 253

Psychosocial and Genetic Factors in Depression . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 254

Stressful Life Events . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 254

Cognitive Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 254

Temperament and Personality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 255

Gender . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 255

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

Treatment of Mood Disorders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 257

Stages of Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 257

Acute Phase Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 257

Continuation Phase Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 261

Maintenance Phase Therapies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 261

Specific Treatments for Episodes of Depression and Mania . . . . . . . . . . . . . . . . . . . . . . . . . . 261
 

Treatment of Major Depressive Episodes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 262

Pharmacotherapies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 262

Alternate Pharmacotherapies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 263

Augmentation Strategies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 265

Psychotherapy and Counseling . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 265

Bipolar Depression . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 265

Pharmacotherapy, Psychosocial Therapy, and Multimodal Therapy . . . . . . . . . . . . 266

Preventing Relapse of Major Depressive Episodes . . . . . . . . . . . . . . . . . . . . . . . . . . . 267

Treatment of Mania . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 267

Acute Phase Efficacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 267

Maintenance Treatment to Prevent Recurrences of Mania . . . . . . . . . . . . . . . . . . . . . 268

Service Delivery for Mood Disorders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 269

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

Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 269

Cognitive Dysfunction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 272

Functional Impairment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 272

Cultural Variation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 272

Prevalence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 273

Prevalence of Comorbid Medical Illness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 273

Course and Recovery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 274

Gender and Age at Onset . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 275

Etiology of Schizophrenia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 276

Interventions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 279

Pharmacotherapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 280

Ethnopsychopharmacology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 282

Psychosocial Treatments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 283

Psychotherapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 283

Family Interventions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 283

Psychosocial Rehabilitation and Skills Development . . . . . . . . . . . . . . . . . . . . . . . . . 283

Coping and Self-Monitoring . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 284

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

Service Delivery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 285

Case Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 286

Assertive Community Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 286

Psychosocial Rehabilitation Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 287

Inpatient Hospitalization and Community Alternatives for Crisis Care . . . . . . . . . . . . . . . . . . 287

Services for Substance Abuse and Severe Mental Illness . . . . . . . . . . . . . . . . . . . . . . . . . . . . 288
 

Other Services And Supports . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 289

Consumer Self-Help . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 289

Consumer-Operated Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 290

Consumer Advocacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 291

Family Self-Help . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 291

Family Advocacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 292

Human Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 292

Housing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 292

Income, Education, and Employment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 293

Health Coverage . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 294

Integrating Service Systems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 295

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

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

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225

	






Adulthood 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.



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

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, 1991; 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,
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

226

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 form of 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 persistence of mood disorders, according to the biopsychosocial 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 persistence 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 &

Lipska, 1995; Andreasen, 1997b). New pharmacological 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
$GXOWV DQG 0HQWDO +HDOWK

227

well, 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

housing—can 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).

	

	

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 80 percent 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 a mental

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 4-1). 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.

3HUVRQDOLW\ 7UDLWV

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.
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

228

Personality traits are thought to confer either beneficial

or detrimental effects on mental health during adulthood. 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.

6HOI(VWHHP

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

Table 4-1. Best estimate 1-year prevalence based on ECA and NCS, ages 18–54

ECA Prevalence (%) NCS Prevalence (%) Best Estimate ** (%)

Any Anxiety Disorder

Simple Phobia

Social Phobia

Agoraphobia

GAD

Panic Disorder

OCD

PTSD

13.1

8.3

2.0

4.9

(1.5)*

1.6

2.4

(1.9)*

18.7

8.6

7.4

3.7

3.4

2.2

(0.9)*

3.6

16.4

8.3

2.0

4.9

3.4

1.6

2.4

3.6

Any Mood Disorder

MD Episode

Unipolar MD

Dysthymia

Biopolar I

Biopolar II

7.1

6.5

5.3

1.6

1.1

0.6

11.1

10.1

8.9

2.5

1.3

0.2

7.1

6.5

5.3

1.6

1.1

0.6

Schizophrenia

Nonaffective Psychosis

Somatization

ASP

Anorexia Nervosa

Severe Cognitive Impairment

1.3

—

0.2

2.1

0.1

1.2

—

0.2

—

—

—

—

1.3

0.2

0.2

2.1

0.1

1.2

Any Disorder 19.5 23.4 21.0

*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
$GXOWV DQG 0HQWDO +HDOWK

229

characterized by pessimism, demoralization, or minor

symptoms 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

with adversity, either independently or by obtaining

appropriate assistance from others. Self-efficacy is a

major component of the construct known as resilience

(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).

1HXURWLFLVP

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).

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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

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.

,PSXOVLYLW\

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).

6RFLRSDWK\

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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

230

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 of mood, anxiety,

and personality disorders throughout adult life.


! !

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

(Ulbrich et al., 1989; McLeod & Kessler, 1990; Turner

et al., 1995; Miranda & Green, 1999).

Divorce is a common example. Approximately onehalf 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 spouse 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., 1991). 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-IV), which is described later in this chapter.

Women are twice as likely as men to develop posttraumatic stress disorder following exposure to lifethreatening 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
$GXOWV DQG 0HQWDO +HDOWK

231

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 &

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).

3DVW 7UDXPD DQG &KLOG 6H[XDO $EXVH

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

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 longterm 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, 1991).

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.

'RPHVWLF 9LROHQFH

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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

232

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 health consequences 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.

,QWHUYHQWLRQV IRU 6WUHVVIXO /LIH (YHQWV

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 emotionfocused couples therapy. A recent review article

evaluated the body of evidence on the effectiveness of

couples therapy and programs to 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
$GXOWV DQG 0HQWDO +HDOWK

233

health were not as evident, but the studies did not have

sufficient rigor from which to draw unequivocal

conclusions (DHHS, 1996).

!


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.

"#


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. 

#!"#


The anxiety disorders include panic disorder (with and

without a history of agoraphobia), agoraphobia (with

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 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, 1-year

prevalence for all anxiety disorders among adults ages

18 to 54 exceeds 16 percent (Table 4-1), 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 (Hornig & McNally, 1995;

American Psychiatric Association, 1998).

3DQLF $WWDFNV DQG 3DQLF 'LVRUGHU

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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

234

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 1-year rates of about 2 percent are documented

consistently in epidemiological studies (Kessler et al.,

1994; Weissman et al., 1997) (Table 4-1). 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).

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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-IV).

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).
$GXOWV DQG 0HQWDO +HDOWK

235

The 1-year prevalence of agoraphobia is about 5

percent (Table 4-1). 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.

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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 dogs);

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 4-1). 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.

6RFLDO 3KRELD

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 possibility 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 1-year prevalence of social phobia ranges

from 2 to 7 percent (Table 4-1), 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).

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Generalized anxiety disorder is defined by a protracted

(> 6 months’ duration) period of anxiety and worry,

accompanied by multiple associated symptoms (DSMIV). These symptoms include muscle tension, easy

fatiguability, poor concentration, insomnia, and
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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 1-year

population prevalence is about 3 percent (Table 4-1).

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).

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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, obsessivecompulsive disorder has now been documented to have

a 1-year prevalence of 2.4 percent (Table 4-1).

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 obsessivecompulsive 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
$GXOWV DQG 0HQWDO +HDOWK

237

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, 1991).

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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: acute1

 (< 3 months’

duration), chronic (> 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 posttraumatic 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 longitudinal 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 1-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). 

	




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 disorders, 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

1 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).
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238

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

animals2

 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.

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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

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 in a serene, unstimulated 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 1980s, 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 full2

 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.
$GXOWV DQG 0HQWDO +HDOWK

239

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 & Lydiard, 1998). Furthermore, with its

emphasis on the neurotransmitter norepinephrine, 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.

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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 & Charney, 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

underlie emotions. There are anatomical projections

between the hippocampus, amygdala, and hypothalalamus (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.4

 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.

3 Fearful facial expressions have been shown to activate 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 glucocorticoids into the circulation. 4

 Also known as coriocotropin-releasing factor.
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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., 1995), 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).

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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).

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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 fearinducing 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

5

 CRH may act as a neuromodulator, a neurotransmitter, or a

neurohormone, depending on the pathway.
$GXOWV DQG 0HQWDO +HDOWK

241

modern 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 women may ruminate more about distressing life

events compared with men, suggesting that a cognitive

risk factor may predispose them to higher rates of

anxiety and depression (Nolen-Hoeksema et al., in

press).

	


	

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). 

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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 cognitivebehavioral 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 obsessivecompulsive disorder, approximately 20 to 25 percent of

patients are unwilling to participate in therapy (March

et al., 1997). Another major limitation of cognitivebehavioral 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.
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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).

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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 prescribed for treatment of anxiety disorders are diazepam,

lorazepam, clonazepam, and alprazolam. Each is now

available in generic formulations (Davidson, 1998).

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 obsessivecompulsive 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 anxiety 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).

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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 (5-HT) 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 1990s, 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 the
$GXOWV DQG 0HQWDO +HDOWK

243

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 (March et

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

mirtazapine may possess lower levels of sexual side

effects, a problem that complicates longer term

treatment with SSRIs, venlafaxine, TCAs, and MAOIs

(Baldwin & Birtwistle, 1998).

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.

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This azopyrine compound is a relatively selective 5-

HT1A 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 obsessivecompulsive disorder or post-traumatic stress disorder

(Stahl, 1996). Buspirone is most useful for treatment of

generalized anxiety disorder, and it is now frequently

used as an adjunct to SSRIs (Lydiard et 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.

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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 costeffective when reserved for patients with more

complex, complicated, severe, or comorbid disorders.

The benefits of multimodal therapies for anxiety need

further study.
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244




In 1 year, about 7 percent of Americans suffer from

mood disorders, a cluster of mental disorders best

recognized by depression or mania (Table 4-1). 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).

Unipolar 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). 

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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 illnesses, 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 Call to Action

on Suicide in 1999 (see Figure 4-1). 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.
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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.

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

condition—death 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 qualitatively

from normal sadness or grief. Normal states of

dysphoria (a negative or aversive mood state) are

typically less pervasive and generally run a more timelimited 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.

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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).

Figure 4-1. Surgeon General’s Call to Action to

Prevent Suicide&1999 

3 Suicide is a serious public health problem

& 31,000 suicides in 1996

& 500,000 people visit emergency rooms due to

attempted suicide

3 Suicide rate declined from 12.1 per 100,000 in

1976 to 10.8 per 100,000 in 1996

& Rate in adolescents and young adults almost

tripled since 1952

& Rate is 50 percent higher than the homicide

rate

3 National Strategy for Suicide Prevention: AIM

& Awareness: promote public awareness of

suicide as a public health problem

& Intervention: enhance services and programs

& Methodology: advance the science of suicide

prevention

3 Risk factors

& Male gender

& Mental disorders, particularly depression and

substance abuse

& Prior suicide attempts

& Unwillingness to seek help because of stigma

& Barriers to accessing mental health treatment

& Stressful life event/loss

& Easy access to lethal methods such as guns

3 Protective factors

& Effective and appropriate clinical care for

underlying disorders

& Easy access to care

& Support from family, community, and health and

mental health care staff
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246

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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-à-vis

schizophrenia or a related psychotic disorder). The socalled 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

sometimes referred to as unipolar major depression

(Thase & Sullivan, 1995). Each new episode also

confers new risks of chronicity, disability, and suicide.

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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).

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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,

6

 The adjective “major” before the word “depression” denotes

the number of symptoms required for the diagnosis, as distinct,

from a proposed new category of “minor depression,” which

requires fewer symptoms (see Chapter 5).
$GXOWV DQG 0HQWDO +HDOWK

247

A. 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) 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.

(2) 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).

(3) 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.

(4) insomnia or hypersomnia nearly every day.

(5) psychomotor agitation or retardation nearly every day (observable by others, not merely subjective

feelings or restlessness or being slowed down).

(6) fatigue or loss of energy nearly every day.

(7) feelings of worthlessness or excessive or inappropriate guilt (which may be delusional) nearly every day

(not merely self-reproach or guilt about being sick).

(8) diminished ability to think or concentrate, or indecisiveness, nearly every day (either subjective account

or as observed by others).

(9) 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. 

B. The symptoms do not meet criteria for a mixed episode. 

C. The symptoms cause clinically significant distress or impairment in social, occupational, or other important areas

of functioning. 

D. 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). 

E. 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.

Table 4-2. DSM-IV criteria for major depressive episode
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248

A. 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.

B. 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

C. 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 B for more than 2 months at a time.

D. 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.

E. There has never been a manic episode, a mixed episode, or a hypomanic episode, and criteria have never been met

for cyclothymic disorder.

F. The disturbance does not occur exclusively during the course of a chronic psychotic disorder, such as schizophrenia

or delusional disorder.

G. 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).

H. The symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of

functioning.

Table 4-3. DSM-IV diagnostic criteria for Dysthymic Disorder
$GXOWV DQG 0HQWDO +HDOWK

249

1990). Bipolar disorder7 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,

1981). 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 & Jamison, 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 subsyndromal 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 (Coryell 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).

7

 Bipolar disorder is also known as bipolar affective disorder and

manic depression.
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250

A. A distinct period of abnormally and persistently elevated, expansive, or irritable mood, lasting at least 1 week (or any

duration if hospitalization is necessary).

B. 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 unimportant or irrelevant external stimuli)

(6) increase in goal-directed activity (either socially, at work or school, or sexually) or psychomotor 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)

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.

Table 4-4. DSM-IV criteria for manic episode

A. 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.

B. 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.

C. 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).

D. 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.

E. 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).

F. The symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of

functioning.

Table 4-5. DSM-IV diagnostic criteria for Cyclothymic Disorder
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251

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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 followup 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). 

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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

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.

$#!


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). 

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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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

252

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

abnormalities 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 abnormality 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.

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For many years the prevailing hypothesis was that

depression was caused by an absolute or relative

deficiency of monoamine8

 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.,

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 quick elevation

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.

(YROYLQJ 9LHZV RI 'HSUHVVLRQ

An important shortcoming of the monoamine

hypothesis was its inattention to the psychosocial risk

factors that influence the onset and persistence of

8

 Monoamine neurotransmitters are a chemical class that

includes catecholamines (norepinephrine, epinephrine, dopamine) and indoleamines (serotonin).
$GXOWV DQG 0HQWDO +HDOWK

253

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 (Brown et al., 1994; Frank et 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 feedback inhibition (Jacobson & Sapolsky,

1991). Shedding light on the regulation of CRH is

expected to hold dividends for understanding both

anxiety and depression. 

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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? 

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.
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

254

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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.

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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. 

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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–“I should have done something to

prevent this,” or “This is my fault”; and (3)

irreversibility–“I’ll never be able to recover from this.”
$GXOWV DQG 0HQWDO +HDOWK

255

According to a recent model of cognitive vulnerability 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

cognitions 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).

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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 & 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.

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Major depressive disorder and dysthymia are more

prevalent among women than men, as noted earlier.

This difference appears in different cultures throughout

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).

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) (NIMH,

1998) and, (2) within the agrarian culture of the Old

Order Amish of Lancaster, Pennsylvania, the rate of

major depressive disorder is both low (i.e., comparable

to that of bipolar disorder)9

 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).
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256

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).

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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 firstdegree 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 samesex 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
$GXOWV DQG 0HQWDO +HDOWK

257

(Tsuang & Faraone, 1990). Those at greater heritable

risk also appear more vulnerable to stressful life events

(Kendler et al., 1995).

The availability of modern molecular genetic

methods now allows the translation of clinical

associations into identification of specific genes

(McInnis, 1993; Baron, 1997). Evidence collected to

date strongly suggests 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 (McInnis,

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, obsessivecompulsive disorder, and panic disorder were rated in

the second highest category, which called for

nonmolecular genetic and/or epidemiological studies to

document further their estimated heritability (NIMH,

1998).

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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

treatment (Katon et al., 1992; Narrow et al., 1993;

Wells et al., 1994; Thase, 1996). Nearly 40 percent of

people with bipolar disorder are untreated in 1 year,

according to the Epidemiologic Catchment Area survey

(Regier et al., 1993). Undertreatment of mood disorders

stems from many factors, including societal stigma,

financial barriers to treatment, underrecognition by

health care providers, and underappreciation by

consumers of the potential benefits of treatment (e.g.,

Regier et al., 1988; Wells et al., 1994; Hirschfeld et al.,

1997). The symptoms of depression, such as feelings of

worthlessness, excessive guilt, and lack of motivation,

also deter consumers from seeking treatment; and

members of racial and ethnic minority groups often

encounter special barriers, as discussed in Chapter 2.

Mood disorders have profoundly deleterious

consequences on well-being: their toll on quality of life

and economic productivity matches that of heart

disease and is greater than that of peptic ulcer, arthritis,

hypertension, or diabetes (Wells et al., 1989). 

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The treatment of mood disorders 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. 

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Acute phase treatment with either psychotherapy or

pharmacotherapy covers the time period leading up to

an initial treatment response. A 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 weekly or

biweekly for monitoring of symptoms, side effects,

dosage adjustments, and support (Fawcett et al., 1987).

Psychotherapies during the acute phase for depression

typically consist of 6 to 20 weekly visits.
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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 pill, 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 covered later

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

nonadherence10 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

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 lifethreatening 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 transitional 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, firstline 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

10 Nonadherence is defined as lack of adherence to prescribed

activities such as keeping appointments, taking medication, and

completing assignments.
$GXOWV DQG 0HQWDO +HDOWK

259

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 mal 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 (NIH & 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

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 after ECT 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 (NIH & 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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

260

across individuals (NIH & 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 (NIH & 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 (NIH & 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 (Horne

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

minimally 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
$GXOWV DQG 0HQWDO +HDOWK

261

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 catatonia. Recent

epidemiological surveys show that the modern 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 underrepresented among those receiving

ECT (Rudorfer et al., 1997). 

On balance, the evidence supports the conclusion

that modern 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.

&RQWLQXDWLRQ 3KDVH 7KHUDS\

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 from 40-60

percent to 10-20 percent (Prien & Kupfer, 1986; Thase,

1993). Relapse despite continuation pharmacotherapy

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

remission). A remission is defined as a complete

resolution of affective symptoms to a level similar 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

pharmacotherapy.

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., 1981; Blackburn et

al., 1986; Simons et al., 1986; Evans et al., 1992). If

confirmed, this advantage may offset the greater shortterm costs of psychotherapy.

0DLQWHQDQFH 3KDVH 7KHUDSLHV

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).


&!&%!!




This section describes specific types of pharmacotherapies and psychosocial therapies for episodes of

depression and mania. Treatment generally targets
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

262

symptom patterns rather than specific disorders.

Differences in the treatment strategy for unipolar and

bipolar depression are described where relevant.

7UHDWPHQW RI 0DMRU 'HSUHVVLYH (SLVRGHV

3KDUPDFRWKHUDSLHV

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 or 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 neurotransmitter’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 neurotransmitter 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; Preskorn & 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.11 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; Preskorn, 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

11 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.
$GXOWV DQG 0HQWDO +HDOWK

263

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 classspecific 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 &

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 Antidepressant 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 antidepressants 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.

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) depressive 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).

Nefazodone, the second newer antidepressant, is

unique in terms of both structure and neurochemical

effects (Taylor et al., 1995). In contrast to the SSRIs,

nefazodone improves sleep efficiency (Armitage 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 (Preskorn, 1995). The

more recently FDA-approved antidepressant, mirtazapine, blocks two types of serotonin receptors, the 5-

HT2 and 5-HT3 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 (Kornstein et

al., in press) found women with chronic depression to

respond better to a SSRI than a tricyclic, yet the opposite for men. This effect was primarily in premenopausal 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.

$OWHUQDWH 3KDUPDFRWKHUDSLHV

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 firmly

whether patients who respond poorly to one class of

antidepressants should be switched automatically to an

alternate class (Thase & Rush, 1997). Several studies
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

264

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 Wort). The widespread publicity

and use of the botanical product from the yellowflowering Hypericum perforatum 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

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 (Salzman, 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,

Figure 4-2. Treatment of depression&newer

pharmacotherapies: Summary findings

3 Newer antidepressant drugs* are effective

treatments for major depression and dysthymia.

& 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, sertraline, and

amisulpride):

59 percent response to active agent

37 percent response to placebo

3 Both older and newer antidepressants demonstrate

similar efficacy.

3 Drop-out rates due to all causes combined are

similar for newer and older agents:

& 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.

*SSRIs and all other antidepressants marketed

subsequently.

 Source: AHCPR, 1999. 
$GXOWV DQG 0HQWDO +HDOWK

265

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.

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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).

3V\FKRWKHUDS\ DQG &RXQVHOLQJ

Many people prefer psychotherapy or counseling over

medication for treatment of depression (Roper, 1986;

Seligman,1995). 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-tomoderate 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 cognitivebehavioral therapy (Beck et 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. Cognitive-behavioral 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 psychotherapy 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 cognitivebehavioral 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. 

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Treatment of bipolar depression12 has received

surprisingly little study (Zornberg & Pope, 1993). Most

psychiatrists prescribe the same antidepressants for

12 Bipolar depression refers to episodes with symptoms 

of depression in patients diagnosed with bipolar disorder.
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

266

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; Zornberg & 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).

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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 metaanalysis 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
$GXOWV DQG 0HQWDO +HDOWK

267

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.

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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; Claghorn & 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 depression, 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., 1996).

Bipolar Depression. No recent randomized clinical

trials have examined prophylaxis against recurrent

depression in bipolar disorder. In one older, wellcontrolled 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).

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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).
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268

A number of other medications initially developed

for other indications are increasingly used for lithiumrefractory 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-1980s, 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 benzodiazepines 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.

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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 & Jamison,

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 lithiumrefractory 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.
$GXOWV DQG 0HQWDO +HDOWK

269

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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

for treating depression in primary care practice (Olfson

& Klerman, 1992; Williams et al., 1999), about onehalf 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 recognizing 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.


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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” nor

“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
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270

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 1-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)

Table 4-6. DSM-IV diagnostic criteria for schizophrenia

A. Characteristic symptoms: Two (or more) of the following, each present for a significant portion of time during a 1-

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.

B. 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).

C. 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).

D. 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 duration of the active and residual periods.

E. 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.

F. 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).
$GXOWV DQG 0HQWDO +HDOWK

271

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

Table 4-7. Positive and negative symptoms of schizophrenia

Positive Symptoms of Schizophrenia

Delusions are firmly held erroneous beliefs due to distortions or exaggerations of reasoning and/or misinterpretations of

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,

loosely associated, or incoherent speech severe enough to substantially impair effective communication is used as an

indicator of thought disorder by the DSM-IV.

Grossly disorganized behavior includes difficulty in goal-directed behavior (leading to difficulties in 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.

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 flattening is the reduction in the range and intensity of emotional expression, including facial expression, voice

tone, eye contact, and body language.

Alogia, or poverty of speech, is the lessening of speech fluency and productivity, thought to reflect slowing or blocked

thoughts, and often manifested as laconic, empty replies to questions.

Avolition is the reduction, difficulty, or inability to initiate and persist in goal-directed behavior; it is often mistaken for

apparent disinterest.
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272

dysfunction common to several psychotic disorders,

rather than being unique to schizophrenia (Toomey et

al., 1998). 

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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 on 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 neuropsychological 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. 

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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.

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On first consideration, symptoms like hallucinations,

delusions, and bizarre behavior seem easily 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
$GXOWV DQG 0HQWDO +HDOWK

273

(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. 

No description 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

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. 

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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 & an der Heiden, 1997). In

general, 1-year prevalence in adults ages 18 to 54 is

estimated to be 1.3 percent (Table 4-1). Onset generally

occurs during young adulthood (mid-20s for men, late20s 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.

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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
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274

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).

 &#

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, sociocultural 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 & Karno, 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 longterm studies reveal that about one-half to two-thirds of

people with schizophrenia significantly improve or
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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.13

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 (DeSisto 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

conceptualization of schizophrenia than is common

today, which may account, in part, for the more

favorable outcomes.

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. 

*HQGHU DQG $JH DW 2QVHW

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. 

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 neuropsychological 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.

13 These are the vital components of most contemporary rehabilitation programs (see section on service delivery).
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276

However, it must be emphasized that group

probabilities do not necessarily speak to individual

cases.

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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.

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 environmental factors likely also play a role (DSM-IV).

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 analogy 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).

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., 1991;

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
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Figure 4-3. Risk of developing schizophrenia.

Source: © Gottesman (1991).

to the left hemisphere (Braun et al., 1995). To explain

laterality, some have proposed a prenatal injury or

insult at the time of left hemisphere development,

which normally lags behind that of the right

hemisphere (Bracha, 1991). 

The anatomical abnormalities found in different

parts of the brain tend to correlate with schizophrenia’s

positive symptoms (Barta et al., 1990; Shenton et al.,

1992, Bogerts et al., 1993; Wible et al., 1995) and

negative symptoms (Buchanan et al., 1993). Positive

symptoms are often linked to temporal lobe

dysfunction, as shown by imaging studies that utilize

blood flow and glucose metabolism. Such dysfunction

possibly is related to abnormal phospholipid

metabolism (Fukuzako et al., 1996). Disorganized

speech (taken to reflect disorganized thinking) has been

associated with abnormalities in brain regions

associated with speech regulation (McGuire et al.,

1998). Negative and cognitive symptoms, especially

those related to volition and planning, are commonly

associated with prefrontal lobe dysfunction (Capleton,

1996; Abbruzzese et al., 1997; Mattson et al., 1997).

This is perhaps related to unusual neuronal density

(Selemon et al., 1998) and may be more prevalent

among patients whose families have a history of

schizophrenia than those whose do not (Sautter et al.,

1995). However, mapping patients’ symptoms with

brain regions is complex and variable. Researchers

believe that the dysfunctions are present in brain

circuitry rather than in one or two localized areas of the

brain (Andreasen et al., 1997, 1998; Wiser et al., 1998).

Excessive levels of the neurotransmitter dopamine

have long been implicated in schizophrenia, although

it is unclear whether the excess is a primary cause of

schizophrenia or a result of a more fundamental

dysfunction. More recent evidence implicates much

greater complexity in the dysregulation of dopamine

and other neurotransmitter systems (Grace, 1991,1992;

Olie & Bayle, 1997). Some of this research ties

schizophrenia to certain variations in dopamine

receptors (Nakamura et al., 1995; Serretti et al., 1998),

while other research focuses on the serotonin system

(Inayama et al., 1996). However, it must be emphasized

that in many cases it is possible that perturbations in
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neurotransmitter systems may result from

complications of schizophrenia, or its treatment, rather

than from its causes (Csernansky & 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 (Hultman

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 fluprone 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 illness, 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” (Lipska & 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 neurodevelopmental 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;
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Recommendation 1. Antipsychotic medications, other than clozapine, should be used as the first-line treatment to reduce

psychotic symptoms for persons experiencing an acute symptom episode of schizophrenia.

Recommendation 2. The dosage of antipsychotic medication for an acute symptom episode should be in the range of

300–1,000 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.

Recommendation 8. Persons who experience acute symptom relief with an antipsychotic medication should continue to

receive this medication for at least 1 year subsequent to symptom stabilization to reduce the risk of relapse or worsening

of positive symptoms.

Recommendation 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

behavioral 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.

* Edited

Source: Lehman & Steinwachs, 1998a, 1998b.

Table 4-8. Selected treatment recommendations, Schizophrenia Patient Outcomes Research Team

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.

	

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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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 selfhelp and consumer-operated services, described later.

It is also important to assist individuals with schizophrenia 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.

3KDUPDFRWKHUDS\

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 D2

receptors, and their therapeutic effects are presumably

due to D2 blockade in the mesolimbic system (Dixon et

al., 1995). 

For acute symptom episodes, treatment recommendations call for dosages of antipsychotic

medication in the range of 300 to 1,000

“chlorpromazine 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

14 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.
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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

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

15 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 restlessness requiring the person to move constantly.
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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

215 inpatient hospital days in the year prior to the study

(Rosenheck et al., 1998b). 

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 evaluated 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 (Lieberman, 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

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).

(WKQRSV\FKRSKDUPDFRORJ\

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 pharmacodynamics

also vary across other ethnic groups.16 Racial and

ethnic variation likely stem from a combination of

genetic and psychosocial factors, such as diet and

health behaviors (Lin et al., 1995).

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

16 For Caucasian, Hispanic, Asian, Africian-Americans variations, see Frackiewicz et al., 1997; Chinese-Jann et al., 1992;

black, white, Chinese, Mexican American-Lam et al., 1995; 

Lin et al., 1995).
$GXOWV DQG 0HQWDO +HDOWK

283

medication metabolism or health behaviors alone

(Frackiewicz et al., 1997).

3V\FKRVRFLDO 7UHDWPHQWV

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). 

3V\FKRWKHUDS\

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,

1997). Individual, group, or family 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). 

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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 (Guarnaccia et al., 1992). Family selfhelp groups are discussed subsequently in this chapter.

3V\FKRVRFLDO 5HKDELOLWDWLRQ DQG 6NLOOV 'HYHORSPHQW

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,
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

284

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, symptom management,

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).

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 longterm 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.

&RSLQJ DQG 6HOI0RQLWRULQJ

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 occurs 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 & Lamberti, 1995). Watching for such

signs is recommended for consumers, family members,

and clinicians (Jorgensen, 1998). Specific training
$GXOWV DQG 0HQWDO +HDOWK

285

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). 

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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

disabilities (Mechanic, 1998; Scheid, 1998).

Additionally, innovations like client-run and clientowned 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).


&
#

The organization of services for adults with severe

mental disorders is the linchpin 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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

286

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 (Cournos &

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.

	


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 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 communitybased 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
$GXOWV DQG 0HQWDO +HDOWK

287

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 community 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 al.,1997, 1998) and creates more

positive attitudes among team members toward people

with mental illnesses.

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&

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

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 & Jonikas (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.

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!

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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

288

services. Inpatient services therefore emphasize safety

measures, crisis intervention, acute medication and reevaluation 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, wellcoordinated 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.

 

	






As many as half 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

& Arns, 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
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incorporating behavioral (motivational) approaches to

substance abuse treatment are superior to traditional

12-step 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 selfhelp 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).

	



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

part.

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).




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, 1991, 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, Hispanic/Latino, and AsianAmerican 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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290

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 consumerrun 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.

	



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 &

del Vecchio, in press). Drop-in centers are places for

obtaining social support and assistance with problems,

without professionals in attendance. The rationale for

consumer 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.cstprogram.edu).

In addition to ongoing evaluations, there are several

published studies of client outcomes with consumer-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
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291

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 peerspecialists integrated into case management teams led

to improved patient outcomes (Felton et al., 1995).

 %&&#

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 & del

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 with other 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 counter 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.

,%#
!+

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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

292

supportive groups to large organizations. The National

Alliance for the Mentally Ill (NAMI) is the largest such

organization. Founded in 1979 in Wisconsin, NAMI

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). 

	


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.





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).

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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
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293

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, 1996). Similarly, another study

found that having greater choice in housing was

associated with greater happiness and life satisfaction

(Srebnik et al., 1995).

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. 

,QFRPH (GXFDWLRQ DQG (PSOR\PHQW

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
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294

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, a consumeroperated 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 & Warner, 1996; Priebe

et al., 1998). 

Some people with serious mental illnesses have

adequate income or financial 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. 

+HDOWK &RYHUDJH

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).
$GXOWV DQG 0HQWDO +HDOWK

295

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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

Program on 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, 1990b, 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; Shern 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; Shern

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

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), Outcasts 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).
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296

& 

 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. 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. 

 5. 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.

 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 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 recognized, 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 Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 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

Overview of Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 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

Prevalence and Incidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 347

Barriers to Diagnosis and Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 348

Course . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 349

Interactions With Somatic Illness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 350


Consequences of Depression . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 350

Cost . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 351

Etiology of Late-Onset Depression . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 351

Treatment of Depression in Older Adults . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 352

Pharmacological Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 352

Tricyclic Antidepressants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 352

Selective Serotonin Reuptake Inhibitors and Other Newer Antidepressants . . . . . . . . 353

Multimodal Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 353

Course of Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 354

Electroconvulsive Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 354

Psychosocial Treatment of Depression . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 355

Alzheimer’s Disease . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 356

Assessment and Diagnosis of Alzheimer’s Disease . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 357

Mild Cognitive Impairment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 357

Behavioral Symptoms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 359

Course . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 359

Prevalence and Incidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 359

Cost . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 360

Etiology of Alzheimer’s Disease . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 360

Biological Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 360

Protective Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 361

Histopathology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 361

Role of Acetylcholine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 361

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

Prevalence of Anxiety . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 364

Treatment of Anxiety . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 364


Schizophrenia in Late Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 365

Prevalence and Cost . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 365

Late-Onset Schizophrenia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 366

Course and Recovery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 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

Service Delivery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 370

Overview of Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 370

Service Settings and the New Landscape for Aging . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 371

Primary Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 372

Adult Day Centers and Other Community Care Settings . . . . . . . . . . . . . . . . . . . . . . . . . . 373

Nursing Homes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 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

Other Services and Supports . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 378

Support and Self-Help Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 378

Education and Health Promotion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 379

Families and Caregivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 379

Communities and Social Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 380

Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 381

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 381
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335

	





The 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 5-1). 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 majority—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 5-1). 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;
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336

Table 5-1. Best Estimate 1-Year Prevalence Rates

Based on Epidemiologic Catchment Area,

Age 55+

Prevalence

(%)

Any Anxiety Disorder 11.4

Simple Phobia 7.3

Social Phobia 1.0

Agoraphobia 4.1

Panic Disorder 0.5

Obsessive-Compulsive Disorder 1.5

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 0.6

Somatization 0.3

Antisocial Personality Disorder 0.0

Anorexia Nervosa 0.0

Severe Cognitive Impairment 6.6

Any Disorder 19.8

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. Latelife 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). 




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 adaptive capacities 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
2OGHU $GXOWV DQG 0HQWDO +HDOWK

337

role in treating and preventing mental health problems

and disorders among older persons.

 !"#$

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.

%#"&%%

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.

A large body of research, including both crosssectional 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 learning 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, a form of 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
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338

expectations and perceptions about memory loss (LevyCushman & 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.

%'("

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 protégés, 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
2OGHU $GXOWV DQG 0HQWDO +HDOWK

339

life cycle, are termed Retirement/Liberation and

Summing 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,

activities, 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

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.

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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 [IOM], 1984).

This constellation of symptoms, while overlapping

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
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340

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 posttraumatic 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 pharmacotherapy (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.

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.


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Older adults are encumbered by 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 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
2OGHU $GXOWV DQG 0HQWDO +HDOWK

341

medical disorders. The symptoms of somatic disorders

may 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 underidentification 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 55

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

(Gallo et al., in press). Researchers estimate that an

unmet 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.

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 between

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.

	


Prevention in mental health has been seen until recently

as an area limited to childhood and adolescence. Now

there is mounting awareness 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 prevention. 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 many 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 prevention of depression and suicide),

treatment-related prevention, prevention of excess

disability, and prevention of premature institutionalization. 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 time may soon arrive for older adults to

be encouraged to have “mood and memory checkups”

in the same manner that they are now encouraged to

have physical checkups (N. Abeles, personal

communication, 1998).
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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.

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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 (Marmar 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 uncontrolled 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).

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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 polypharmacy 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
2OGHU $GXOWV DQG 0HQWDO +HDOWK

343

understanding of complex drug interactions (Nemeroff

et al., 1996). For example, many of the selective

serotonin reuptake inhibitors compete for the same

metabolic pathway used by beta-blockers, type 1C antiarrhythmics, 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).

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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 modern

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

that attention to these factors and aggressive

intervention, where appropriate, maximize function

(Lebowitz & Pearson, in press).

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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 (Sano 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).


 

Treatment of mental disorders in older adults

encompasses pharmacological interventions, electroconvulsive 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.
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344

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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 neuroleptics, 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 pharmacodynamic 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 pharmacodynamic 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 older adults receiving an

adequate dose and course of medication.

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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., parkinsonism, akathisia, and dystonia), and tardive

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).
2OGHU $GXOWV DQG 0HQWDO +HDOWK

345

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 neuroleptics are. For clozapine, the low risk of tardive

dyskinesia is well established (Kane et al., 1993). The

incidence of tardive 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.

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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.

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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

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.

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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, psychosocial 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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346

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 psychosocial 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.

*DS %HWZHHQ (IILFDF\ DQG (IIHFWLYHQHVV

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.


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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 (NIH 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 fullfledged 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.

% *(+,

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
2OGHU $GXOWV DQG 0HQWDO +HDOWK

347

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 51 percent more days lost from work

than is major depression (Broadhead et al., 1990).

Major and minor depression are associated with high

health care utilization and poor quality of life (see

Unutzer et al., 1997a, for a review).

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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., 1991).

3UHYDOHQFH DQG ,QFLGHQFH

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-year U.S. prevalence

rates of about 5 percent or less in older people (Gurland
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

348

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,1

 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., 1991). 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.

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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 ageassociated 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

1

 Hypomania is marked by abnormally elevated mood, but the

symptoms are not severe enough for mania (see Chapter 4).
2OGHU $GXOWV DQG 0HQWDO +HDOWK

349

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 costeffectiveness 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.

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.

&RXUVH

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 Developpment 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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

350

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.

,QWHUDFWLRQV :LWK 6RPDWLF ,OOQHVV

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.

-'# 

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 lateonset 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).
2OGHU $GXOWV DQG 0HQWDO +HDOWK

351

Swedish researchers found much higher rates of

suicidal ideation after interviewing adults aged 85 years

and older. They found a 1-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.,

1998). Thus, increased understanding of depression in

older people may be, literally, a matter of life and

death.



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).

	





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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

352

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).

 
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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).

3KDUPDFRORJLFDO 7UHDWPHQW

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.

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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 frequently used in older adults.
2OGHU $GXOWV DQG 0HQWDO +HDOWK

353

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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 & Salzman, 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 p450 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.,

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.

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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
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354

percent receiving IPT, and 80 percent of those

receiving nortriptyline plus IPT. Those receiving a

placebo and routine clinical visits had a 90 percent

recurrence rate (Reynolds et al., 1999). 

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Although 60 to 80 percent of older patients with

moderate to severe unipolar depression2

 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

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.

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Electroconvulsive therapy (ECT) is regarded as an

effective intervention for some forms of treatmentresistant 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). Chapter 4 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; Depression 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

2

 Unipolar depression refers to the depression in patients with

major depressive disorders but not to the depression in patients

with bipolar disorders.
2OGHU $GXOWV DQG 0HQWDO +HDOWK

355

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 moodstabilizing medication or less frequent maintenance

ECT, in most cases is required to prevent relapse

(Rudorfer et al., 1997).

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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 psychodynamic 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, reminiscence, 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.
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356

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). Problemsolving 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 changes, social

isolation, and helplessness associated with late-life

depression. Controlled trials suggest that interpersonal

psychotherapy alone, or in combination with pharmacotherapy, is effective in all phases of treatment for latelife 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 (Pasternak 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 psychodynamic 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 deals 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 cognitivebehavioral 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, 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.
2OGHU $GXOWV DQG 0HQWDO +HDOWK

357

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 multiinfarct dementia, dementia of Parkinson’s disease,

dementia of Huntington’s disease, dementia of Pick’s

disease, frontal lobe dementia, and others.

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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 problem 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

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 B12 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 -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,
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358

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.)

PLAQUES

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 underrecognized,

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’Connor et 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
2OGHU $GXOWV DQG 0HQWDO +HDOWK

359

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.

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Alzheimer’s disease is associated 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,

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.

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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).

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Alzheimer’s disease is a prominent disorder of old age:

8 to 15 percent of people over age 65 have Alzheimer’s

disease (Ritchie & 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
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360

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; Stern et al.,

1994), and future cohorts are expected to have attained

greater levels of education. For 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).

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The growing number of patients with Alzheimer’s

disease is likely to have serious public health and

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).

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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, -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

-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.
2OGHU $GXOWV DQG 0HQWDO +HDOWK

361

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 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).

#0#

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 (Stern 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

plaque formation (via anti-inflammatories) (Mrak et al.,

1995).

+LVWRSDWKRORJ\

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 -amyloid. Thus, the generation of

-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 -amyloid

generation from the amyloid precursor protein,

decreasing -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 neurotransmitters. Because complete blockade of steps within the

-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).

5ROH RI $FHW\OFKROLQH

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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

362

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 turn, 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 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.

$FHW\OFKROLQHVWHUDVH ,QKLELWRUV

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

acetylcholine 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).

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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
2OGHU $GXOWV DQG 0HQWDO +HDOWK

363

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

hallmark of 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 pharmacotherapies.

"## ./

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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

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 caregivers identify, plan, and increase pleasant activities for

the patient, such as taking a walk, designed to improve

their mood (Teri & Gallagher-Thompson, 1991).

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
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364

psychosocial intervention—individual and family

counseling plus support group participation—aimed at

caregiving spouseswas shown to delay institutionalization 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).

	













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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 5-1). Phobic anxiety disorders are among

the most common mental disturbances in late life

according to the ECA study (Table 5-1). Prevalence

studies of panic disorder (0.5 percent) and

obsessive-compulsive disorder (1.5 percent) in older

samples reveal low rates (Table 5-1) (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.

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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).
2OGHU $GXOWV DQG 0HQWDO +HDOWK

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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, respiratory 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,

1991). Psychomotor impairment from benzodiazepines

can have severe consequences, leading to impaired

driver skills and motor vehicle crashes (Barbone 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).

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).

#. 

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 avolition5

 (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. 

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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 5-1 and 4-1).

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

5

 Alogia refers to poverty of speech, and avolition refers to lack of

goal-directed behavior.
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contributes to the greater economic burden associated

with late-life schizophrenia.

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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).

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The original conception of “dementia praecox,” the

early term for schizophrenia, emphasized progressive

decline (Kraepelin, 1971); 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-Zorrilla et al., 1999). The older

patients experienced less severe symptoms overall and

were on lower daily doses of neuroleptics than middleaged 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.

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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 earlyonset 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
2OGHU $GXOWV DQG 0HQWDO +HDOWK

367

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;

Olichney et 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 lateonset 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.

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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). 
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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 over 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).

(SLGHPLRORJ\

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The prevalence of heavy drinking (12 to 21 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 variously 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).

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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
2OGHU $GXOWV DQG 0HQWDO +HDOWK

369

visit physicians and to be prescribed psychoactive

drugs (Cafferata et al., 1983; Baum et al., 1984; Mossey & 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 (71 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).

,OOLFLW 'UXJ $EXVH DQG 'HSHQGHQFH

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 1-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).

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 1971, 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.

&RXUVH

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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

370

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 activities (Hser et al., 1993). These

findings emphasize the need to focus more attention on

substance abuse in late life, especially in light of

demographic trends.

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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 intermediateacting 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).

	





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
2OGHU $GXOWV DQG 0HQWDO +HDOWK

371

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 lifethreatening 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 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.

#%(	






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
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372

Table 5-2. Settings for mental health services for older

adults*

Communities

Homes

Group homes

Retirement communities

Primary care and general

medical sector

Outpatient therapy

Community mental health

centers

Institutions

Nursing homes

General hospitals with

psychiatric units

General hospitals without

psychiatric units

State mental hospitals

Veterans Affairs hospitals

*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 settings.

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.

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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.

6

 Primary care includes services provided by general practitioners,

family physicians, general internists, certain specialists designated

as primary care physicians (such as pediatricians and obstetriciangynecologists), nurse practitioners, physician assistants, and other

health care professionals. General medical settings include all

primary care settings plus all non-mental health specialty care.
2OGHU $GXOWV DQG 0HQWDO +HDOWK

373

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 (Unutzer et al., 1997a). New models of

service delivery in primary care include mental health

teams, consultation-liaison models,7

 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; Gask et 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).

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).

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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.

7

 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. 
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374

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.

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Most older adults live in the community and only a

minority of them live in nursing homes; of the latter,

about two-thirds have some kind of mental disorder

(Burns, 1991). The majority have some type of

dementia, while others have disabling depression or

schizophrenia (Burns, 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.

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Older adults with severe and persistent mental

disorders (SPMD) are the most frequent users of longterm 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
2OGHU $GXOWV DQG 0HQWDO +HDOWK

375

intervention. Although these groups of disorders have

different courses of illness and outcomes, they have

many overlapping clinical features, share the common

need for mental health long-term care services, and are

frequently treated together in long-term care settings

(Burns, 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 (Burns, 1991). However, institutions are

expected to play a substantially smaller role than

community-based settings in future systems of mental

health long-term care (Bartels 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 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). Communitybased 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
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376

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.

0#%# 
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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 socalled “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).

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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 costeffective models for treating older people with mental

illness.

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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
2OGHU $GXOWV DQG 0HQWDO +HDOWK

377

symptoms (George, 1992; Paveza & Cohen, 1996;

Moak, 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 longterm 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 may 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, 1997c). 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.

&DUYHG2XW 0HQWDO +HDOWK 6HUYLFHV IRU 2OGHU

$GXOWV

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

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 lacking 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.

2XWFRPHV 8QGHU 0DQDJHG &DUH

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
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378

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).


#('

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 selfhelp 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.

'( !3'

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 consumers8

 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

8

 Consumers are people engaged in and served by mental health

services.
2OGHU $GXOWV DQG 0HQWDO +HDOWK

379

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).

('#(

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

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 modern 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 mobility/energy activities

requiring significant physical exertion with low

mobility/energy ones. The social portfolio is a mental

health promotion strategy for helping people develop

new strengths and satisfactions.

0(%

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., 1990; Cohen,
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380

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.

'(##

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 latelife 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
2OGHU $GXOWV DQG 0HQWDO +HDOWK

381

process of facilitating or providing services,

communities need to consider the diversity of their

older residents—racial and ethnic diversity, socioeconomic 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 caregiver 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.



 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.

 2. Continued intellectual, social, and physical activity

throughout the life cycle are important for the

maintenance of mental health in late life. 

 3. 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

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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Overview of the Current Service System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 405

The Structure of the U.S. Mental Health Service System . . . . . . . . . . . . . . . . . . . . . . . . . . . . 405

The Public and Private Sectors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 407

Patterns of Use . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 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 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 415

Mental Health Compared With Total Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 416

Financing and Managing Mental Health Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 418

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

Managed Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 420

Major Types of Managed Care Plans . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 421

The Ascent of Managed Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 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
 

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
405

	











This 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, criminalization of persons with mental illness, and disparities 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

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 costcontainment 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.


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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

facto system each year. The system is usually described

as having four major components or sectors:

& 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
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406

people with mental disorders. The great bulk of

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 management, partial hospitalization, 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.

& 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 medical/

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.1

 The general medical 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

health services; the human services sector (see

below) plays a much larger role in their care.

& The human services sector consists of social

services, school-based counseling services,

residential rehabilitation services, vocational

rehabilitation, criminal justice/prison-based services, and religious professional counselors. In the

early 1980s, about 3 percent of U.S. adults used

mental health services from this sector. But by the

early 1990s, the National Comorbidity Survey

(NCS) revealed that 5 percent of adults used such

services. For children, school mental health services 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 percent.

& 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 percent 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 6-1 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 6-1. Proportion of adult population using mental/

addictive disorder services in one year

Total Health Sector 11%*

Specialty Mental Health 6%

General Medical 6%

Human Services Professionals 5%

Voluntary Support Network 3%

Any of Above Services 15%

*Subtotals do not add to total due to overlap.

Source: Regier et al., 1993; Kessler et al., 1996

1

 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.”
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407

Table 6-2. Proportion of child/adolescent populations

(ages 9%17) 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

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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

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. Initiatives designed to increase enrollment for selected

populations include the newly created Child Health

Insurance Program, which provides block grants to

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
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408

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 conceivably 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.

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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 Diagnostic and Statistical

Manual of Mental Disorders (i.e., DSM-III and DSMIIIR) 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).2

 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 6-1).

Also, slightly 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 criteria. To be more specific, 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. Consequently, about 28 percent of the

population have either a mental or addictive disorder

(Regier et al., 1993; Kessler et al., 1994). 

Given that 28 percent of the population have a

diagnosable mental or substance abuse disorder and

only 8 percent of adults both have a diagnosable disorder 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 6-1 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 percent 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.
2UJDQL]LQJ DQG )LQDQFLQJ 0HQWDO +HDOWK 6HUYLFHV

409

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

& Sherbourne, 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.

&KLOGUHQ DQG $GROHVFHQWV

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, 1 percent of children and adolescents

received their mental health services from human

service professionals, such as those in child welfare and

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 11 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 a currently diagnosable disorder. Providing access
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410

Figure &-1. Annual prevalence ot mental/addictive dlaordera and aervlcea tor adulta 

Percent of Population (28%) With 

MentiiVAcldictive Disol'derw 

(In one year) 

Diagnosis and 

No Treatment 

(20%) 

Percent ot Population (15%) Receiving 

Mental Health Sarvicea* 

(In one year) 

Percent of Population Receiving 

Specialty Care (6%) 

Percent of Population Receiving 

General Medical Care (5%) 

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 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 &-2. Annual prevalence ol mentaVaddlcllve disorders and services for children 

Percent of Population (21%) With 

MentaVAcldlctlve Dlaorder-. 

(In one year) 

Diagnosis and 

No Treatment 

(11%} 

Percent ot Population (21%) Receiving 

Mental Health Services 

I (In one yeer} 

Percent of Population 

Receiving School 

Services (11%} 

- 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 
2UJDQL]LQJ DQG )LQDQFLQJ 0HQWDO +HDOWK 6HUYLFHV

411

to appropriate mental health services is a fundamental

concern for mental health policymakers in both the

public and private arenas.

 '(
((

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).


*"

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 individuals and for the time of individuals providing family

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 disorders: 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
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412

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).

"

Mental health expenditures for treatment and rehabilitation 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

treatment centers for children. Insurance coverage of

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 for 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)

(Figure 6-4).3

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.
2UJDQL]LQJ DQG )LQDQFLQJ 0HQWDO +HDOWK 6HUYLFHV

413

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 historically 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,

they will not be included in the spending estimates that

follow.

'('( +*,

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.4

 The distribution for all types of providers is

shown in the figure.

+*,)# !)("'*'"

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 outof-pocket payments. These out-of-pocket payments

include copayments from individuals with private insurance, 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 insurance coverage for mental health care.

4

 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, psychiatrists, 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.
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414

Figure 6-5. 1996 National health accounts, $69 billion total mental health 

expenditures by provider type 

Psychiatrists GM Physicians 

10% 5% 

Psychology/S.W. 

14% 

Multi-Sv MHC 

18% 

Source: Market al., 1998 (Revised) 

Psychiatry Hospitals 

17% 

GM Hospitals 

6% 

Nursing Home/ 

Home Health 

7% 

Outpatient 

Rx Drugs 

9% 

GM Hospital 

Psychiatry Units 

10% 

Figure 6-6. Mental health expenditures by payer--1996 (total = $69 billion) 

Medicaid 

19% 

Other State/Local 

18% 

Source: Market al., 1998 (Revised) 

Private Insurance 

27% 

Private: 47% 

Out of Pocket 

17% 
2UJDQL]LQJ DQG )LQDQFLQJ 0HQWDO +HDOWK 6HUYLFHV

415

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 *** 53%

Medicare 13%** 14%

Medicaid 12%** 19%

Uninsured *** &

State/Local 16% 18%

Other

Federal *** 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.

** 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)

*+*,

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).

Table 6-4. Population, spending, and per capita mental

health costs by insurance status (1996)

Insurance Status

Number

(millions)

Spending

($ billions)

Per Capita

($ per year)

Private 167.5 32.3 193

Insurance

Payment 18.4

Out-of-Pocket

Payment 11.7

Other Private 2.2

Medicare 30.6 9.8 320

Medicaid 27.0 13.0 481

Other and

Uninsured 41.7 13.9 333

SPMI* 5.1 12.4 2,431

Other 36.6 1.5 41

Total 266.8 69.0 259

* Severe and persistent mental illness

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.
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416

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%1996)

Mental

Health Care

All Health

Care

Private

 Out-of-Pocket Payment 3% 5%

 Private Insurance 9% 9%

 Other Private 7% 7%

Total Private 6% 7%

Public

 Medicare 9% 10%

 Medicaid 9% 13%

 Other Federal Government 4% 6%

 State/Local Government 8% 10%

Total Public 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 spending figures acquire more meaning

when they are compared with those 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 providers who work in social service industries are excluded 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

payer, 1996

Expenditures in

Billions (1996)

Mental

Health

Care

All 

Health

Care Percentage

Private

 Client 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%

Total Public $36 $447 8%

Total Expenditures $66 $943 7%

Source: Mark et al., 1998 (Revised)
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417

Estimated total health care expenditures were $943

billion in 1996. Of this amount, 7 percent was for

mental health services. Table 6-6 describes expenditures 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 governments.

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.
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418

'",'*'',,'(

'( '

#'",'* 


.!'(#

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).

'('('( 
!'"',

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);

& Medical management (e.g., monitoring

psychotropic medications);

& Case management;

& Intensive psychosocial rehabilitation services; and

& 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.

'
!'"','(

'( '

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
2UJDQL]LQJ DQG )LQDQFLQJ 0HQWDO +HDOWK 6HUYLFHV

419

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-ofpocket 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 lowincome individuals on public support) receive Medicaid

coverage (with more than 2 percent having dual

Medicare/Medicaid coverage). With per capita

expenditures of $481 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 uninsured. 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

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 5.1

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.

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From the time they were introduced in 1929 until the

1990s, 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-ofpocket (i.e., co-insurance) and would use annual

deductibles, much as auto insurance companies do, to

minimize the administrative costs of processing small

claims.
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420

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 responsibility 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 adverse 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 Experiment, 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 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 healthpromoting and preventive orientation (often found in
2UJDQL]LQJ DQG )LQDQFLQJ 0HQWDO +HDOWK 6HUYLFHV

421

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).

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Health maintenance organizations 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 contracts 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 Associations, 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 capitated)

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

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 arrangements. Covered services, utilization management techniques, financial risk, and other features vary depending 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

organizations (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, administrators 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.
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422

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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 financing 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). Managed care 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 to 24 percent. Point-ofservice (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 Incomeeligible 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 carveout 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 nonMedicaid 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 functions. 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 administrative mechanisms and away from the use of benefit

design (e.g., using copayments and annual deductibles)
2UJDQL]LQJ DQG )LQDQFLQJ 0HQWDO +HDOWK 6HUYLFHV

423

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.

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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 treatment 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 caseby-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

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 extensive 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 Appendix 6-A for Patient Bill of Rights.)

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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 costcontainment 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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

424

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.


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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 mental 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.7

 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

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 longterm 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).


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The quality of care within health systems has been

assessed traditionally on three dimensions: (1) the

structure 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

5

 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.

7

 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.
2UJDQL]LQJ DQG )LQDQFLQJ 0HQWDO +HDOWK 6HUYLFHV

425

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

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 41 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. Measures 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
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426

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 professional consensus

treatment guidelines (Berndt 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) (Burnam & 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 wellbeing 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. 

'*'#','(

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“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 motivation 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.

0"'*'#

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 costsharing was used by the smallest percentage, with the

use of separate deductibles almost nonexistent on
2UJDQL]LQJ DQG )LQDQFLQJ 0HQWDO +HDOWK 6HUYLFHV

427

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-ofpocket burden that families face under existing mental

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-ofpocket expense of only $1,500 and $1,800, respectively, that a family would pay for medical/surgical

treatment.

,('*",'#'(

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!'"',

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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

428

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.

"(!

In the United States in the late 20th century, researchbased 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
2UJDQL]LQJ DQG )LQDQFLQJ 0HQWDO +HDOWK 6HUYLFHV

429

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. 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

have 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.
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

430

++*1	23/!'(#'*

!$4, 

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

plan;

& 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 consumer 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 Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 438

Ethical Issues About Confidentiality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 438

Values Underlying Confidentiality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 439

Reducing Stigma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 439

Fostering Trust . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 439

Protecting Privacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 439

Research on Confidentiality and Mental Health Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 440

Current State of Confidentiality Law . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 441

Overview of State Confidentiality Laws . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 441

Exceptions to Confidentiality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 442

Consent by the Person in Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 442

Disclosure to the Client . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 443

Disclosure to Other Providers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 443

Disclosure to Payers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 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
 

Federal Confidentiality Laws . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 446

Potential Problems With the Current Legal Framework . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 447

Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 448

Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 449

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 449
437

	












 
 






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. 

This ringing endorsement of the importance of

confidentiality in the provision of mental health

treatment comes from the U.S. Supreme Court (Jaffee

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: 85 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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

438

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. 


  !"

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 and 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.

!#$
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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,
&RQILGHQWLDOLW\ RI 0HQWDO +HDOWK ,QIRUPDWLRQ

439

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. 

*$%($)!+'!(!$!)

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.

(%#!+!+,

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

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.

!+%

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. 

#!+! #)

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 involving

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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

440

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.

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$$,

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
&RQILGHQWLDOLW\ RI 0HQWDO +HDOWK ,QIRUPDWLRQ

441

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.

%''!(!$!)"

One expert has described the current law governing 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 information 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.


  !"''!(!$!)"

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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

442

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.

-#!'!(!$!)

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. 

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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
&RQILGHQWLDOLW\ RI 0HQWDO +HDOWK ,QIRUPDWLRQ

443

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.

'LVFORVXUH WR WKH &OLHQW

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). 

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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.

'LVFORVXUH WR 3D\HUV

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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

444

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.

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An issue of some controversy in mental health is whether 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 kin. 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.

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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. 

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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 confidentiality.” These certificates are issued through the Department 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
&RQILGHQWLDOLW\ RI 0HQWDO +HDOWK ,QIRUPDWLRQ

445

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. 

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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

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. 

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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. 
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446

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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 programs, which would identify a patient as receiving treatment services (42 U.S.C. 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 committed 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 in criminal

investigations of “extremely serious 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
&RQILGHQWLDOLW\ RI 0HQWDO +HDOWK ,QIRUPDWLRQ

447

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 confidentiality protection; it does not create a general right to

medical privacy within the workplace. 

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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

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,

Confidentiality 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
0HQWDO +HDOWK $ 5HSRUW RI WKH 6XUJHRQ *HQHUDO

448

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.

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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.
&RQILGHQWLDOLW\ RI 0HQWDO +HDOWK ,QIRUPDWLRQ

449



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 implemented

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. 

6. 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.

	





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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 Culture . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 456

Facilitate Entry Into Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 457

Reduce Financial Barriers to Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 457

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 458

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 458
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Mental health is fundamental to health and human

functioning. Yet much more is known about

mental illness than about mental health. Mental illnesses 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 staggering 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 symptoms 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 illness—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 obtaining 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. 



The Nation has realized immense dividends from 5

decades of investment in research focused on mental

illness and mental health. Yet to realize further advances 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, integrative 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 interventions. The opportunities available underscore the need

for the Federal mental health research community to
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strengthen partnerships with both the biotechnology

and the pharmaceutical industries. Gaining new knowledge 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 scientific 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 addressed.

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.


 ! 

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 coverage 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

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 knowledge to ensure more informed consumers. Organizations and individuals are encouraged to draw freely

upon the report in their own efforts to combat the

insidious effects of stigma.

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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 treatments. 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, medication 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 assistance. 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.
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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 communities. 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 if they have mental health coverage, much

less where to seek help for problems.

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The service system as a whole, as opposed to treatment

services considered in isolation, dictates the outcome of

treatment (Goldman, 1998). The fundamental components 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:

& 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 resources that play a role in ensuring the health and

well-being of children and their families; 

& Assertive community treatment, an intensive

approach to treating people with serious mental

illnesses; 

& Combined services for people with co-occurring

severe mental disorders and substance abuse

disorders; 

& A range of prevention and early case identification

programs; and

& Disease management programs for conditions such

as late-life depression in primary care settings.

All too frequently, these effective 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 professionals also is inadequate in many areas of the country,

especially in rural areas (Peterson et al., 1998). Particularly keen shortages are found in the numbers of mental

health professionals serving children and adolescents

with serious mental disorders and older people (Peterson 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.

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State-of-the-art treatments, carefully refined through

years of research, are not being translated into community settings. As noted throughout this report, a wide

variety of community-based services are of proven

value for even the most severe mental illnesses. Exciting 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. 
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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).

 !*+*

*

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 circumstances, 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 utilization of services must be further understood through

research. In the interim, culturally competent services—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 treatments 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.
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& 

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 faithbased 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 expertise is available. The juvenile justice system represents

another pathway, although many overburdened facilities 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 community to recognize mental illness and mental health

problems, to respond sensitively, to know what resources exist, and to make proper referrals and/or to

address problems effectively themselves. For the

general public, primary care represents a prime opportunity to obtain mental health treatment or an appropriate referral. Yet primary health care providers vary in

their capacity to recognize and manage mental health

problems. Many highly committed primary care providers 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 prolonged periods (Sussman et al., 1987; Monahan et al.,

1999). For most, these fears are unwarranted: coercion,

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 advocates 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 adequate 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.

 

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 & Sherbourne,

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. Individuals 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 reducing financial barriers to treatment. Still, for the more

than 44 million Americans who lack any health insurance, equity of mental health and other health benefits

is moot. For many who do have health insurance,

coverage restrictions for mental health treatment
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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 (Frank et al.,

1999). In light of cost-containment strategies of managed care, concerns about undertreatment 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.



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 rehabilitation. 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. 

%

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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.

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Title 45. Code of Federal Regulations, Part 46, Protection of

Human Subjects (1991).