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Families Caring for an Aging America (2016)

Chapter: Front Matter

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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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

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THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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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

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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.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

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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.

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Learn more about the National Academies of Sciences, Engineering, and Medicine at www.national-academies.org.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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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.

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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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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

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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Study Staff

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

Consultant

VICKI FREEDMAN, University of Michigan

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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Reviewers

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

Page viii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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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.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

Acknowledgments

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

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

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

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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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.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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5-4 Case Example of the COPE Intervention

5-5 Key Findings and Conclusions: Programs and Supports for Family Caregivers of Older Adults

6-1 Perspectives of Primary Care Physicians Who Care for Older Adults with Dementia

6-2 Key Findings and Conclusions: Regarding Family Caregivers of Older Adults’ Interactions with Health Care and Long-Term Services and Supports Systems

7-1 Recommendations

FIGURES

2-1 Number and percentage of older adults receiving assistance in the prior month by level of assistance, 2011

2-2 High-need older adults, by dementia status and self-care needs, 2011

2-3 Older adults as share of the U.S. population by percentage, 2012 to 2050

2-4 The changing racial and ethnic diversity of the older adult population, 2010 to 2040 (in millions)

2-5 Projected distribution of the number of adult children for the frail older population, 2000 to 2040

3-1 An example of a dementia care trajectory

3-2 Percentage of caregivers who helped every day or most days during the past month, by type of help, 2011

3-3 Percentage of caregivers coordinating care and providing medical tasks during the past month

3-4 Percentage of caregivers responding very much, somewhat, not so much to positive aspects of caregiving

4-1 Percentage of caregivers reporting financial difficulties, by the care recipient’s dementia status and level of impairment

4-2 Employment status of family caregivers of older adults, by sex, co-residence, relationship, race, education, and household income

5-1 Organizational framework for reviewing family caregiving interventions

6-1 Core concepts of person- and family-centered care

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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TABLES

1-1 Administration for Community Living Programs That Support Caregivers of Older Adults

1-2 U.S. Department of Veterans Affairs Programs and Services for Caregivers

2-1 Projected Future Need for Long-Term Services and Supports at Age 65 in 2015-2019, by Gender

2-2 Family Caregivers of Older Adults, Number and Percentage by Care Recipient’s Level of Need, 2011

2-3 Average Number of Years That Caregivers of Older Adults Spent Caregiving at the Time of the Survey

2-4 Estimated Average Number of Years and Percentage of Remaining Life Caring for an Older Adult, by Age Group

2-5 Selected Demographic Characteristics of Family Caregivers, High-Need Family Caregivers, and the Overall U.S. Adult Population, by Percentage, 2011

2-6 Family Relationships of Caregivers of Older Adults, by Care Recipient’s Level of Need, by Percentage, 2011

2-7 Age, Race, and Hispanic Origin of the Older Adult Population, by Number and Percentage, 2012

3-1 What Family Caregivers Do for Older Adults

3-2 Type and Frequency of Family Caregiver Tasks in the Past Month, by Care Recipient’s Dementia Status and Need for Help with Self-Care, by Percentage, 2011

3-3 Family Caregiver Reports of Emotional, Physical, and Other Difficulties, by Care Recipient’s Dementia Status and Level of Impairment, by Percentage, 2011

3-4 Summary of Findings on the Physical Health Outcomes of Family Caregiving of Older Adults

3-5 Family Caregiving’s Social Impact, by Care Recipient’s Dementia Status and Level of Impairment, by Percentage, 2011

3-6 Risk Factors for Adverse Outcomes Due to Family Caregiving

4-1 States with Expansions in Unpaid Family and Medical Leave

4-2 Workers Without Employer-Paid Leave, by Average Wage Category and Weekly Work Hours, 2015

4-3 Characteristics of State Mandatory Paid Family and Medical Leave Programs

4-4 Characteristics of State Mandatory Paid Sick Leave Laws

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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Family caregiving affects millions of Americans every day, in all walks of life. At least 17.7 million individuals in the United States are caregivers of an older adult with a health or functional limitation. The nation’s family caregivers provide the lion’s share of long-term care for our older adult population. They are also central to older adults’ access to and receipt of health care and community-based social services. Yet the need to recognize and support caregivers is among the least appreciated challenges facing the aging U.S. population.

Families Caring for an Aging America examines the prevalence and nature of family caregiving of older adults and the available evidence on the effectiveness of programs, supports, and other interventions designed to support family caregivers. This report also assesses and recommends policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults.

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