Families Caring for an Aging America
Committee on Family Caregiving for Older Adults
Board on Health Care Services
Health and Medicine Division
Richard Schulz and Jill Eden, Editors
A Report of
THE NATIONAL ACADEMIES PRESS
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001
This activity was supported by Grant No. 14-02-39 from Archstone Foundation, Grant No. 18203 from California Health Care Foundation, Grant No. 20130622 from The Commonwealth Fund, Grant No. 940 from Health Foundation of Western and Central New York, Grant No. 2014-0094 from The John A. Hartford Foundation, Grant No. 2013-247 from The Retirement Research Foundation, Contract No. VA101-14-C-0014 from the U.S. Department of Veterans Affairs, and grants from Alliance for Aging Research, Alzheimer’s Association, an anonymous donor, The Fan Fox and Leslie R. Samuels Foundation, May and Stanley Smith Charitable Trust, The Rosalinde and Arthur Gilbert Foundation, Santa Barbara Foundation, and Tufts Health Plan Foundation. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.
International Standard Book Number-13: 978-0-309-44806-2
International Standard Book Number-10: 0-309-44806-9
Digital Object Identifier: 10.17226/23606
Library of Congress Control Number: 2016956939
Additional copies of this publication are available for sale from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu.
Copyright 2016 by the National Academy of Sciences. All rights reserved.
Printed in the United States of America
Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2016. Families caring for an aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president.
The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. C. D. Mote, Jr., is president.
The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president.
The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine.
Learn more about the National Academies of Sciences, Engineering, and Medicine at www.national-academies.org.
Reports document the evidence-based consensus of an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and committee deliberations. Reports are peer reviewed and are approved by the National Academies of Sciences, Engineering, and Medicine.
Proceedings chronicle the presentations and discussions at a workshop, symposium, or other convening event. The statements and opinions contained in proceedings are those of the participants and have not been endorsed by other participants, the planning committee, or the National Academies of Sciences, Engineering, and Medicine.
For information about other products and activities of the Academies, please visit nationalacademies.org/whatwedo.
COMMITTEE ON FAMILY CAREGIVING FOR OLDER ADULTS
RICHARD SCHULZ (Chair), Director, University Center for Social and Urban Research, University of Pittsburgh
MARIA P. ARANDA, Associate Professor, University of Southern California School of Social Work
SUSAN BEANE, Vice President and Medical Director, Healthfirst, Inc.
SARA J. CZAJA, Leonard M. Miller Professor and Scientific Director, Center on Aging, University of Miami Miller School of Medicine
BRIAN M. DUKE, System Director, Senior Services, Main Line Health
JUDY FEDER, Professor, McCourt School of Public Policy, Georgetown University
LYNN FRISS FEINBERG, Senior Strategic Policy Advisor, AARP Public Policy Institute
LAURA N. GITLIN, Director and Professor, Center for Innovative Care in Aging, Johns Hopkins University School of Medicine
LISA P. GWYTHER, Director, Duke Family Support Program; Associate Professor, Department of Psychiatry and Behavioral Sciences, Duke University
ROGER HERDMAN, Retired
LADSON HINTON, Geriatric Psychiatrist and Professor, Department of Psychiatry and Behavioral Sciences, University of California, Davis
PETER KEMPER, Professor Emeritus, Health Policy and Administration; Demography, Pennsylvania State University
LINDA O. NICHOLS, Co-Director, Caregiver Center, Memphis Veterans Affairs Medical Center; Professor, Preventive and Internal Medicine, University of Tennessee Health Science Center
CAROL RODAT, New York Policy Director, PHI (Paraprofessional Healthcare Institute), Inc.
CHARLES P. SABATINO, Director, Commission on Law and Aging, American Bar Association
KAREN SCHUMACHER, Professor, College of Nursing, University of Nebraska Medical Center
ALAN STEVENS, Director, Center for Applied Health Research Program on Aging and Care, Baylor Scott & White Health
DONNA WAGNER, Dean, College of Health and Social Services, New Mexico State University
JENNIFER L. WOLFF, Associate Professor, Department of Health Policy and Management, Bloomberg School of Public Health, Johns Hopkins University
JILL EDEN, Study Director
KATYE MAGEE, Senior Program Assistant
AMY BATCHELOR, Research Associate (through May 2015)
KATHRYN ELLETT, U.S. Department of Health and Human Services Detail (April through July 2015)
GUS ZIMMERMAN, Research Associate (starting July 2015)
SHARYL NASS, Director, Board on Health Care Services
VICKI FREEDMAN, University of Michigan
This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report:
ELISABETH BELMONT, MaineHealth
CHRISTOPHER M. CALLAHAN, Indiana University Center for Aging Research and Regenstrief Institute, Inc.
ANDREW CHERLIN, Johns Hopkins University
EILEEN CRIMMINS, University of Southern California
PEGGYE DILWORTH-ANDERSON, University of North Carolina at Chapel Hill
DAVID GRABOWSKI, Harvard Medical School
PAMELA HYMEL, Walt Disney Parks and Resorts
JUDY D. KASPER, Johns Hopkins Bloomberg School of Public Health
ARTHUR KLEINMAN, Harvard Medical School
CAROL LEVINE, United Hospital Fund
MARGARET NEAL, Portland State University
CHARLES E. PHELPS, University of Rochester
ALAN ROSENFELD, Steward Health Care (Retired)
ROBYN I. STONE, LeadingAge Center for Applied Research
COURTNEY HAROLD VAN HOUTVEN, Durham Veterans Affairs Medical Center and Duke University Medical Center
KENNETH W. WACHTER, University of California, Berkeley
GAIL R. WILENSKY, Project HOPE
DONNA L. YEE, ACC Senior Services
HEATHER M. YOUNG, University of California, Davis
Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by DAVID B. REUBEN, University of California, Los Angeles, and STEPHEN E. FEINBERG, Carnegie Mellon University. They were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.
The committee and staff are indebted to a number of individuals and organizations for their contributions to this report. The following individuals provided testimony to the committee:
DONNA BENTON, Director, Older Adults Pacific Clinic
MARIE A. BERNARD, Deputy Director, National Institute on Aging, National Institutes of Health
CLIFF BURT, Caregiver Specialist, Georgia Division of Aging Services
CYNTHIA CALVERT, Founder and Principal, WORKFORCE 21C; Senior Counsel, WorkLife Law
MARIE-THERESE CONNOLLY, Director, Life Long Justice; Senior Scholar, Woodrow Wilson International Center for Scholars
EILEEN CRIMMINS, AARP Professor of Gerontology, Davis School of Gerontology, University of Southern California
TOM DELBANCO, Co-Director, OpenNotes; Richard and Florence Koplow-James Tullis Professor of General Medicine and Primary Care, Harvard Medical School
KAREN FREDRIKSEN-GOLDSEN, Professor and Director, Hartford Center of Excellence, University of Washington School of Social Work
WINSTON GREENE, Family Caregiver
KATHY KELLY, Executive Director, National Center on Caregiving, Family Caregiver Alliance
KATHY KENYON, Family Caregiver
NINA KOHN, Professor of Law, Syracuse University College of Law
CAROL LEVINE, Director, Families and Health Care Project, United Hospital Fund
SUSAN C. REINHARD, Senior Vice President and Director, AARP Public Policy Institute; Chief Strategist, Center to Champion Nursing in America
ZALDY S. TAN, Medical Director, Alzheimer’s and Dementia Care Program; Associate Professor, David Geffen School of Medicine, University of California, Los Angeles
LAURA TREJO, General Manager, Los Angeles Department of Aging
MARIKO YAMADA, Former State Assembly Member for California’s 4th Assembly District
DONNA L. YEE, Chief Executive Officer, Asian Community Center
HEATHER YOUNG, Associate Vice Chancellor for Nursing, Betty Irene Moore School of Nursing, University of California, Davis
We also extend special thanks to the following individuals who were essential sources of information, generously giving their time and knowledge to further the committee’s efforts:
EILEEN APPELBAUM, Senior Economist, Center for Economic and Policy Research
SCOTT BEACH, Center for Social and Urban Research, University of Pittsburgh
ELLEN BLACKWELL, Senior Advisor, Centers for Medicare & Medicaid Services
TERRY FULMER, Former Dean, Bouvé College of Health Sciences, Northeastern University
BARBARA J. GAGE, Expert, Center for Health Policy, Brookings Institution
MARISSA GORDON, Senior Health Information Privacy Specialist, U.S. Department of Health and Human Services (HHS)
CHRISTINA HEIDE, Acting Deputy Director, Health Information Privacy, Office for Civil Rights, HHS
SUSAN JENKINS, Administration for Community Living, HHS
MEG KABAT, National Director, Caregiver Support Program, U.S. Department of Veterans Affairs
HELEN LAMONT, Office of the Assistant Secretary for Planning and Evaluation, HHS
SHARI LING, Deputy Chief Medical Officer, Center for Clinical Standards and Quality, Centers for Medicare & Medicaid Services
GREG LINK, Aging Services Program Specialist, Administration for Community Living, HHS
ELIZABETH McGLYNN, Director, Center for Effectiveness and Safety Research, Kaiser Permanente
COLES MERCIER, Health Insurance Specialist, Centers for Medicare & Medicaid Services
D. E. B. POTTER, Senior Survey Statistician, Agency for Healthcare Research and Quality, HHS
RUTHIE ROSENFELD, Family Caregiver
JANET SCHLARB, Center for Social and Urban Research, University of Pittsburgh
RACHEL SEEGER, Senior Advisor, Public Affairs and Outreach, Office for Civil Rights, HHS
JOAN WEISS, Senior Advisor, Health Resources and Services Administration
Funding for this study was provided by the Alliance for Aging Research, Alzheimer’s Association, an anonymous donor, Archstone Foundation, California Health Care Foundation, The Commonwealth Fund, The Fan Fox and Leslie R. Samuels Foundation, Health Foundation of Western and Central New York, The John A. Hartford Foundation, May and Stanley Smith Charitable Trust, The Retirement Research Foundation, The Rosalinde and Arthur Gilbert Foundation, Santa Barbara Foundation, Tufts Health Plan Foundation, and the U.S. Department of Veterans Affairs. The committee appreciates the opportunity and support extended by the sponsors for the development of this report.
Many within the Health and Medicine Division of the National Academies of Sciences, Engineering, and Medicine were helpful to the study staff. We would like to thank Patrick Burke, Chelsea Frakes, Greta Gorman, Nicole Joy, Tracy Lustig, Bettina Ritter, and Lauren Shern.
This page intentionally left blank.
This page intentionally left blank.