In the spring of 2009, Dr. Goodheart convened the APA Presidential Task Force on Caregivers. Task Force members are: Andrea Farkas Patenaude, PhD, Chair (Harvard Medical School and Dana-Farber Cancer Institute), Martha Crowther, PhD, MPH (University of Alabama), Timothy Elliott, PhD, ABPP (Texas A&M University), William Haley, PhD (University of South Florida), Barry J. Jacobs, PsyD, (Crozer Keystone Health System, PA), and Sara Honn Qualls, PhD (University of Colorado, Colorado Springs). The expertise of the group included aging, disability, cultural diversity and pediatric illness in relation to caregiving and  experience in research, clinical and community practice, and teaching about caregiving in a variety of settings.

The Task Force held biweekly conference calls, one face-to-face three-day meeting in April 2010, and a lunch meeting at the 2010 convention. The Task Force determined in early discussions that its principal product would be an online “Family Caregiver Briefcase for Psychologists.” The Briefcase is an appealing, instructive, but not inclusive resource to raise awareness of the range of issues encountered by family caregivers and the important roles psychologists can and do play in their work with them. The Briefcase will allow psychologists easy access to clinical assessment and intervention tools appropriate for use with diverse groups of caregivers, to key research articles about caregiving to stimulate thinking about future projects, and to resources which can  be useful to practitioners, researchers, educators and policy advocates.

Given the breadth of its project, APA boards, committees, divisions and ethnic minority psychological associations were asked to appoint liaisons to the Presidential Task Force. Liaisons from 31 divisions, 21 boards and committees and one ethnic minority psychological association provided input to the Task Force to assure that the needs and resources of their constituent groups were addressed within the Briefcase. A list of those individuals is presented as Appendix A.

In addition, to encourage the involvement of the APA membership more broadly, Dr. Goodheart met with the 2010 Convention Program Chairs in August 2009 to inform them that caregiving would be a central theme of the 2010 convention and to invite divisions to participate in the Presidential Initiative by offering programs on caregiving that would highlight the contributions of their division to caregiver programs, service and research.

The Task Force wrote and edited most of the Briefcase text, after reviewing the literature from which they selected assessment measures, interventions, references and resources to be included in the Briefcase. Suggestions from the liaisons were also integrated into the Briefcase.

The Task Force’s principal product is the online Family Caregiver Briefcase for Psychologists, which will be available on the APA website at the beginning of 2011. Containing over 120 information-filled web pages, references and links, The Briefcase represents a significant opportunity for psychologists to consider how they might utilize their skill and experience with families to assist family caregivers through individual and organizational practice, research, teaching and community service.

Outline of Contents

In the Briefcase

• Caregiving Facts
• Practice
• Research
• Education
• Advocacy
• Resources

Caregiving Facts

• Who are Family Caregivers and What are their Roles?
• When the Care Recipient is an Adult
• When the Care Recipient is a Minor Child
• When the Care Recipient is a Veteran
• When the Care Recipient is Someone With a Mental Disorder
• Caregiving at End-of-Life
• Caregiving and Bereavement
• Long Distance Caregiving
• Cultural Diversity and Caregiving
• Risks for Family Caregivers
• The Financial Costs of Family Caregiving
• Positive Aspects of Caregiving
• Family Caregivers’ Needs are Often Invisible
• Family Caregiver Well-Being is Important to Care Recipient Health

Practice

• Roles for Psychologists as Direct Service Clinicians and Consultants
• Profiles of Psychologists as Direct Service Clinicians and Consultants
• Common Caregiving Problems
• How do Caregivers Reach Psychologists
• Vignettes in 6 sites of Care
• What do Psychologists Need to Know to Help Family Caregivers?
• Variations for Practice for Culturally Diverse Groups
• Conceptual Models 
            - Family Systems-Illness Model
            - Person-Environment Fit
            - Biobehavioral Model
            - Medical family Therapy
            - Stress and Coping During the Caregiver Career
            - Pediatric Psychosocial Preventive Health Model
            - Illness Beliefs Model
• Assessment
            - Assessment Strategy
            - Beginning Questions to Ask
            - Assessment Tools
                      - Intake Interviews and Reports
                      - Caregiver Stress and Burden
                      - Mental Health
                      - Caregiver Coping
                      - Family Contexts of Caregiving
                      - Problem Behaviors Checklist
                      - Cognitive Problems
                      - Daily Functioning
                      - Quality of Care 
                      - Medical Problems 
                      - Behavioral Observation
                      - Decision-Making Capacity
                      - Caregivers from Diverse Cultures
                      - Cultural Justification for Caregiving Scale
                      - Acculturation Rating Scale
                      - Arizona Social Support Interview Schedule
                      - Picot Caregiver Rewards Scale  
• Intervention
• Common Factors in Caregiving Interventions
• Characteristics of Successful Caregiver Programs
• Cultural Variations in Interventions
• Caregiving Intervention Models and Strategies
• Individual Interventions
• Dementia
• Chronic Illness
• Physical Disabilities
• Acquired brain injuries
• Cancer and other illnesses
• Stroke
• Substance Abuse
• Serious Mental Illness
• War-related Mental Illness or TBI
• Family Interventions
             - Parents of seriously ill children
• Veterans with mental disorders or TBI
• Serious Mental Illness s
• Substance abuse
• Dementia
• Interventions for Diverse Cultural Groups
• Business Pragmatics
• Structuring family interventions
• Who is the client?
• Billing Options
• Billing Cautions
• Common Ethical Issues 
• HIPPA
• Barriers to Full Legal Recognition of Caregiver’s Rights
• Diminished Capacity
• Proxy Consent for Minors

Research

• Roles for Psychologists as Researchers
• Profiles of Psychologists as Researchers 
• Observations on the State of the Field
• Major Areas of Study
• Important Methodological Issues
• Understudied Topics
• Funding for Caregiver Research

Teaching

• Roles for Psychologists as Educators
• Profiles of Psychologists as Educators
• Caregiving and Curricula
• Workshops on Caregiving
• Recommended Resources for Educators
• Interprofessional Teams

Advocacy

• Psychologists as Policy Advocates
• Profiles of Psychologists as Policy Advocates and Program Developers
• Caregiving Legislation and Policy Initiatives
• National Family Caregiver Support Program
• Lifespan Respite Care Act
• Caregivers and Veterans Omnibus Health Services Act of 2010 
• Caregivers in Health Reform
• Public Mental Health Emergency Preparedness Act
• Kinship Caregiver Support Act
• Caregiving Coalitions
• Advocacy Resources

Resources 

• Key Websites
• Resources for Specific Health Issues
• State and national Resource Locators and Tools to Coordinate Caregiver Support
• Resources for Diverse Populations
• Multicultural Caregiving
• Caregivers of Children
• Caregivers of Adults and Older Adults
• Caregivers of Individuals with Disabilities
• Caregivers of Service Members and Veterans
• Caregivers of Individuals with Mental Disorders
• Caregivers of Individuals with Addictive Disorders
• Young Caregivers
• Resources for Psychologists
• General Resources
• Reports
• Videos
• Resources to Hand Caregivers

APA 2010 Convention

Caregiving was a central theme of the APA 2010 Convention. Former First Lady Rosalynn Carter received an APA Presidential Citation for her more than four decades of enduring effort to improve the quality of life and mental health services for people both in the United States and around the world, and for her commitment to addressing the needs and supporting the significant contributions of caregivers.

The Task Force presented a Presidential Symposium, “Serving Family Caregivers in your Community: Opportunities, Roles, and Resources for Psychologists.” The symposium was very well attended with CEUs offered to attendees. The Task Force was also successful in advocating for in inclusion of the term, “Caregiving” in the APA subject index for Convention and CE proposals and for searching the online Convention program.

APA Divisions sponsored 22 symposia and poster sessions in support of this Initiative. The programs focused on diverse aspects of psychological research, education, intervention, interdisciplinary collaboration, and policy formulation that contribute to the well-being of family caregivers across the life span. The symposia were:

• Parenting Adolescents in Chronic Illness Contexts—Families Resilient and At-Risk (Division 54)
• Telehealth Intervention for Family Caregivers—Key Issues and Cross-Cultural Developments (Division 22)
• Caregivers for Survivors of TBI—Perspectives on Psychosocial Intervention (Division 22)
• Dementia Caregiver Well-Being—Family and Individual Interventions, Diversity, and Self-Efficacy (Division 12 – Section II)
• Juvenile Justice Programming—APA Presidential Initiative (Division 41)
• Experiences of Child Caregivers—What Do We Know Now? (Division 37)
• Telehealth and Telepsychology Come of Age—Research, Practice, and Reimbursement Solutions (Divisions 22, 19, 29, 37, 38, 42)
• Clinical Health Psychology Grand Rounds—Depression (Division 38)
• Caregiver Family Therapy—A Clinically Derived Family Intervention Model (Division 20)
• Problem-Solving Training Benefits Family Caregivers of Individuals With Disabilities (Division 22)
• Evidence-Based Treatment for Traumatized Children and Their Families (Division 53)
• Caregiving, Health, and Well-Being in Late Life (Division 20)
• Functional Assessment of Children Seeking Medicaid Services—Involving Family Caregivers (Division 22)
• Assessment and Prevention II Poster with Caregiving papers (Division 12)
• Youth Living With a Grandparent Caregiver (Division 7)
• Hypnotic Interventions for Children and Caregivers—Anxiety, Pain, Palliative Care (Divisions 30, 22, 29, 42, 55)
• Portrayals of Caregivers in the Media: The Picture of Health, or Not? (Divisions 43, 32, 35)
• A Community Resource for Building Support for Caregivers—The Rosalynn Carter Institute for Caregiving (RCI) and Evidence-Based Interventions in Caregiving (Division 22)
• Adulthood Transition for Children With Medical and Neurological Conditions—Clinicians and Caregivers (Division 40)
• Giving to Others - A Social Psychological Perspective on the Consequences of Caregiving and Social Support (Division 8)
• Treatment and Intervention Poster with Caregiving papers (Division 12) 
• Stress and Coping, Cancer, Diabetes, and Cardiac Health, Eating Disorders, Sexual Health, and Health Behavior Poster with Caregiving papers (Division 38)

APA Resolution on Caregiving

The Task Force is currently developing an APA Resolution on Caregiving. The proposed Resolution will describe the role of family caregivers in contemporary society, bring attention to this important issue, and convey and affirm that psychological research and practice are critical to the health and well-being of caregivers and care recipients. It will outline the empirical support for assessment and interventions to address the mental and behavioral health of caregivers and associated outcomes such as improved quality of life, enhanced physical health, improved quality of relationships with family and friends, and reduced burden on family caregivers. It will also highlight the efforts of psychologists and APA and describe how psychologists utilize their skill and experience with families to assist family caregivers through individual and organizational practice, research, teaching and community service. Recommendations for future action addressing practice, research, education and training, and public policy issues will also be delineated. It is planned that the draft resolution will be on the spring 2011 Cross Cutting agenda. 

Promotion and Dissemination

Although the web will be the primary dissemination mechanism, flyers and bookmarks have been developed announcing the launch of the online Family Caregiver Briefcase for Psychologists. Thus far bookmarks have been distributed to all attendees of the 2010 APA Convention and the flyers have been distributed to State, Provincial, and Territorial Psychological Associations. They will continue to be distributed broadly both throughout the APA membership - at state and regional Psychological Association meetings, to Divisions at the Division Leadership Conference and to members of Governance at Council of Representatives and Consolidated Meetings. In addition outreach will be conducted to key external groups including health and human service professionals, family caregiver organizations and their constituents, government and other agencies, and policy makers. 

All of the above groups and the large number of organizations included in the briefcase will be asked to link from their websites to the Briefcase and to distribute the promotional materials to their constituent groups.

Targeted action will be taken to link this useful APA resource to efforts related to the recent declaration of 2011 as “The National Year of the Family Caregiver” by the U.S. Administration on Aging.

The Task Force expresses appreciation to Dr. Goodheart for her vision for creating something of practical value to APA members, and her support in maximizing the benefit of the Briefcase by making it highly visible within APA.  We also thank Debbie DiGilio for her outstanding, unwavering guidance toward completion of what often felt like a daunting task. 

We anticipate that the core of this Briefcase can serve members for years to come, with small changes as the field produces new approaches, new research findings, and new tools and resources.  We dedicate this effort to the millions of family members who carry a magnificent load of responsibility and care on a daily basis.

The members of the APA Presidential Task Force on Caregivers are indebted to the following individuals for their contributions to the Initiative:

APA President Carol Goodheart, EdD for her selection of Family Caregiving as one of her Presidential Initiatives and for the very personal and informed guidance and support she provided to the Task Force.

APA Executive Directors, Rhea K. Farberman, APR, Public and Member Communications and Gwendolyn P. Keita, PhD, Public Interest Directorate for providing staff to support this Initiative including: Dana K. Wakefield, Assistant Director, APA Web Site and Dawn Barton, Manager, Information Architecture and Deborah DiGilio, Director of the APA Office on Aging, Public Interest Directorate and APA Staff Liaison to the Task Force. Deborah DiGilio worked tirelessly on the many details related to production of the Briefcase and was also a valuable source of information about APA for Task Force members.

The 2010 APA 2010 Presidential Task Force on Caregivers Task Force Liaisons for their input to the Family Caregiver Briefcase for Psychologists and their enthusiastic support of this project.

The 2010 Convention Program Chairs for encouraging their members to offer convention programs on caregiving.

APA 2010 Presidential Task Force on Caregivers
Task Force Liaisons

Divisions

Division 1: Society for General Psychology
Florence Denmark, PhD
Pace University
Department of Psychology
41 Park Row, 13th Floor
New York, NY 10038

Division 2: Society for the Teaching of Psychology
Dana S. Dunn, PhD
Moravian College
Department of Psychology
1200 Main Street
Bethlehem, PA  18018-6614

Division 7: Developmental Psychology
Ted Dix, PhD
Human Development & Family Sciences
School of Human Ecology
SEA 2.434
University of Texas at Austin
1 University Station
Austin, TX 78712

Division 12: Clinical Psychology
Ronald T. Brown, PhD
Dean and Professor of Public Health
Temple University Health Sciences Center
College of Health Professions
3307 North Broad Street
300 Jones Hall (602-00)
Philadelphia, PA  19140

Division 16: School Psychology
Ronda Talley, PhD, MPH
Division of Human Development and Disability
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention
1600 Clifton Rd, E-88,
Atlanta, GA 30333

Division 17: Society of Counseling Psychology
Kathleen Chwalisz, PhD
Southern Illinois University at Carbondale
Department of Psychology
Carbondale, IL  62901

Division 18: Psychologists in Public Service
Jacqueline Remondet Wall, PhD, HSPP, CRC
Director, Undergraduate Programs in Psychology
Research Coordinator and Associate Professor
School of Psychological Sciences
University of Indianapolis
1400 East Hanna Avenue
Indianapolis, IN 46227

Division 19: Military Psychology
Christine Truhe, PsyD
Professional Psychology
& Founder & President
Summit Supports Our Troops
382 Springfield Ave., Suite 212
Summit, NJ 07901
(908) 273-4122

Division 20: Adult Development and Aging
Louis Burgio, PhD
School of Social Work
1080 South University Avenue, 2772 SSWB
University of Michigan
Ann Arbor, MI  48109-1106

Division 21: Applied Experimental and Engineering Psychology
Santresda Johnson PhD
Eyak Development Corporation, ANAM Program
Office of the Surgeon General
Experimental Neuropsychology
P.O.Box74276
Richmond, VA 23236

Division 22: Rehabilitation Psychology
Linda Mona, PhD
VA Long Beach Healthcare System
28732 Mount Rose Rd
Rancho Palos Verdes, CA  90275

Division 27: Community Psychology
Maurice J. Elias, PhD
Psychology Department, Rutgers University
53 Avenue E, Tillett Hall
Piscataway, NJ 08854-8040

Division 29: Psychotherapy
Rosie Adam-Terem, PhD
1833 Kalakaua Avenue,  #800
Honolulu, HI  96815-1528

Division 31: State, Provincial, and Territorial Psychological Association Affairs
Connie Paul, PhD, ABPP
Tennessee Psychological Association
Administrative Services Officer
5154 Stage Road, Ste 102
Memphis, TN  38134-3118

Division 33: Intellectual and Developmental Disabilities
Laraine Glidden, PhD
Distinguished Professor of Psychology
St. Mary’s College of Maryland
18952 E. Fisher Rd
St. Mary’s City, MD 20686-3001

Division 35: Society for the Psychology of Women
Martha Banks, PhD
Research & Development Division
A Backans Diversified Computer Processing, Inc.
1700 W Market Street, Department RD301
Akron, OH  44313-7002

Division 36: Psychology of Religion
Amy Ai, PhD
University of Pittsburgh
2028 Cathedral of Learning
4200 Fifth Ave
Pittsburgh, PA  15260

Division 37: Society for Child and Family Policy and Practice
Carolyn S. Schroeder, Ph.D., ABPP
862 E. 900 Road
Lawrence, KS 66047

Division 38: Health Psychology
Kim Shriffen, PhD
Towson University                                             
Psychology Department, Room PY400A 
8000 York Road                                    
Towson, Maryland 21252

Division 40: Clinical Neuropsychology
Marsha Nortz Gragert, PhD, ABPP-CN
Pediatric Neuropsychologist and Assistant Professor
MLC 10006
Div of Behavioral Medicine and Clinical Psychology
Cincinnati Children's Hospital Medical Center
3333 Burnet Ave
Cincinnati, OH 45229-3039

Division 41: American Psychology-Law Society
Eve M. Brank, JD, PhD
Law-Psychology Program
Department of Psychology
University of Nebraska-Lincoln
238 Burnett Hall, P.O. Box 880308
Lincoln, NE 68588-0308

Division 42: Independent Practice
Merla Arnold, PhD, RN
Independent Geropsychology Practice
13 Bennett Avenue
Huntington Station, New York 11746

Division 43: Society for Family Psychology
Barbara Fiese, PhD
Department of Human & Community Development
1016B Doris Kelly Hall MC-081
904 W Nevada St
Urbana, IL  61801-3811

Division 44: Society for the Psychological Study of
Lesbian, Gay, Bisexual, and Transgender Issues
David W. Coon, PhD
Professor, College of Nursing & Health Innovation
Arizona State University
500 North 3rd Street, MC 3020
Phoenix, AZ 85004

Division 45: Society for the Psychological Study of Ethnic Minority Issues
Jeffrey M. Ring, PhD
Director of Behavioral Sciences & Family Medicine Residency Program, White Memorial Medical Center
1720 Cesar Chavez Avenue
Los Angeles, CA 90033

Division 46: Media Psychology & Division 49: Group Psychology and Group Psychotherapy
Irene Deitch, PhD
31 Hylan Blvd. # 14B
Staten Island, NY 10305-2079

Division 50: Addictions
Kimberly C. Kirby, PhD
Senior Scientist & Director, Behavioral Interventions Research
Treatment Research Institute
150 S. Independence Mall West, Suite 600
Philadelphia, PA 19106

Division 53: Society of Clinical Child and Adolescent Psychology
Barbara Tylenda, PhD, ABPP
Clinical Associate Professor, Dept. of Psychiatry & Human Behavior
The Warren Alpert Medical School, Brown University
Center for Autism and Developmental Disabilities
Emma Pendleton Bradley Hospital
1011 Veterans Memorial Parkway
East Providence, Rhode Island  02915

Division 54: Society of Pediatric Psychology
Mary Jo Kupst, PhD
Department of Pediatrics
Medical College of Wisconsin
8701 Watertown Plan Road
Milwaukee, WI  53226

Division 56: Trauma Psychology
Joan Cook, PhD
Assistant Professor
Department of Psychiatry
Yale University
950 Campbell Avenue
West Haven, CT 06516

Boards and Committees

Board for the Advancement of Psychology in the Public Interest (BAPPI)
Luis A. Vazquez, PhD
Associate Dean, Regents Professor
Graduate School
MSC PSL
New Mexico State University
P.O. Box 30002
Las Cruces, NM  88003-8002

Board of Educational Affairs (BEA)
Ronald T. Brown, PhD
Senior Vice President for Academic Affairs and Provost
Wayne State University
656 West Kirby, Suite 4092
Faculty Administration Building
Detroit, MI  48202

Board of Professional Affairs (BPA)
Mary Ann McCabe, PhD (Acting)
6524 Jay Miller Drive
Falls Church, VA  22041

Board of Scientific Affairs (BSA)
Richard Schulz, PhD
Professor of Psychiatry, Epidemiology, Sociology, Psychology, Community Health, & Health and Rehabilitation Sciences
University of Pittsburgh
121 University Place
Pittsburgh, PA 15260

Committee for the Advancement of Psychology Practice (CAPP)
Susan H. McDaniel, PhD
777 S. Clinton Ave
Rochester, NY  14620-1448

Committee on Aging (CONA)
Dolores Gallagher Thompson, PhD, ABPP
Professor of Research, Department of Psychiatry & Behavioral Science
Stanford University School of Medicine
401 Quarry Rd, Stanford, CA 94305-5717

Committee on Children, Youth and Families (CYF)
Anita J. Thomas, PhD
Assistant Professor, Counseling Psychology
Loyola University Chicago
820 N. Michigan Avenue
Chicago, IL 60611

Committee on Disability Issues in Psychology (CDIP)
Fong Chan, PhD
Professor and Director of Clinical Training Rehabilitation Psychology Program
University of Wisconsin-Madison
432 East Campus Mall, Room 414
Madison, WI 53706-1496

Committee on Division and APA Relations (CODAPAR)
Frank M. Webbe, PhD
Professor of Psychology
Florida Institute of Technology
150 W. University Blvd.
Melbourne, FL 32901

Committee on Early Career Psychologists
Michelle Braun, Ph.D., ABPP
Assistant Director, Inpatient Mental Health
Diplomate in Clinical Neuropsychology
Boston VA Healthcare System
Instructor in Psychiatry, Harvard Medical School
940 Belmont Street, 116A
Brockton, MA 02301

Committee on Ethnic Minority Affairs (CEMA)
Usha Tummala, PhD
Department of Counseling, Dev &Edu Psychology
Boston College
319 Campion Hall
140 Commonwealth Avenue
Chestnut Hill, MA 02467

Committee on International Relations in Psychology (CIRP)
Deanna Chitayat, PhD
Apt 7D
161 W 75th St
New York, NY  10023-1805

Committee on Legal Issues (COLI)
Eve M. Brank, J.D., PhD
Law-Psychology Program
Department of Psychology
University of Nebraska-Lincoln
238 Burnett Hall, P.O. Box 880308
Lincoln, NE 68588-0308

Committee on Lesbian, Gay, Bisexual, and Transgender Concerns (CLGBTC)
Constance R. Matthews, PhD
1612 Elizabeth Road
State College, PA 16801

Committee on Professional Practice and Standards (COPPS)
Mary Ann McCabe, PhD
6524 Jay Miller Drive
Falls Church, VA  22041

Committee on Psychology and AIDS (COPA)
Willo Pequegnat, Ph.D.
Center for Mental Health Research on AIDS
Div of AIDS, Behavioral Research and AIDS
National Institute of Mental Health
6001 Executive Boulevard, Room 6-219B
Bethesda, MD 20852

Committee on Rural Health (CRH)
James L. Werth, Jr, PhD
Director, PsyD Program in Counseling Psychology
Department of Psychology, Box 6946
Radford University
Radford, VA  24142

Committee on Psychology Teachers at Community Colleges (PT@CC)
Julie A. Penley, Ph.D.
Associate Professor of Psychology
Special Assistant to the Dean
El Paso Community College, PO Box 20500
El Paso, TX 79998-0500

Committee on Socio Economic Status (CSES)
Martha E Wadsworth, PhD
Associate Professor, Department of Psychology
University of Denver
2155 S. Race Street, Denver, CO 80208-3500

Committee on Women in Psychology (CWP)
Jane M. Simoni, PhD
Department of Psychology
3909 W. Stevens Way, NE
University of Washington, Box 351525, Seattle, WA  98195-1525

Continuing Education Committee (CEC)
Michele J. Karel, PhD
Veterans Affairs Medical Center, Psychology Service, 3-5-C
940 Belmont Street
Brockton, MA 02301

Ethnic Minority Psychological Associations

National Latina/o Psychological Association
Yvette Tazeau, PhD
Assessment/Testing (Clinical Neuropsychology) and Management Consulting
14531 South Bascom Avenue
Los Gatos, CA  95032

Independent Advisors

Nick McLain, M.S., CRC, LPC
Doctoral Student, Rehabilitation Psychology University of Wisconsin-Madison

Geraldine Fennell PhD, Chair
Belfast Branch, Carers UK
Director, Care Alliance Ireland

Stephen Zarit, Ph.D.
Professor of Human Development
HDFS Department Head
Penn State University