Accommodating hearing impairedd classroom
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, Work Life 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, Open Notes; 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. SOURCE: Data from the 2011 NHATS and the companion NSOC. REINHARD, Senior Vice President and Director, AARP Public Policy Institute; Chief Strategist, Center to Champion Nursing in America ZALDY S. Caregivers providing care to “high-need” older adults—those who have at least two selfcare needs or dementia—are more likely to help with a wide variety of tasks, including helping with chores, helping the older adult get around the house, keeping track of medications, and making medical appointments. The critical role of caregivers in achieving patient-centered care. THE NATIONAL ACADEMIES PRESS This PDF is available at SHARE Families Caring for an Aging America DETAILS 340 pages | 6 x 9 | PAPERBACK ISBN 978-0-309-44806-2 | DOI: 10.17226/23606 AUTHORS BUY THIS BOOK FIND RELATED TITLES Richard Schulz and Jill Eden, Editors; Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, Engineering, and Medicine Visit the National Academies Press at and login or register to get: – Access to free PDF downloads of thousands of scientiﬁc reports – 10% off the price of print titles – Email or social media notiﬁcations of new titles related to your interests – Special offers and discounts Distribution, posting, or copying of this PDF is strictly prohibited without written permission of the National Academies Press. Families Caring for an Aging America FAMIL F LIES CARI C ING F FOR A AN AG GING AM MERIC CA Committeee on Family y Caregivingg for Older A Adults Board on Health H Care S Services Health and Medicine D Division Ricchard Schulzz and Jill Edden, Editors A Report R of PR REPUBLIC CATION CO OPY: UNCOR RRECTED PROOFS Copyright © National Academy of Sciences. Families Caring for an Aging America THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001 This activity was supported by Grant No. 18203 from the California Health Care Foundation, Grant No. 940 from Health Foundation of Western and Central New York, Grant No. 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. Memberrs are electe ed by their p peers for outtstanding related to contributtions to rese earch. National Academy off Sciences to d by their pe eers for extrraordinary ccontributionss to enginee ering. Reports typically t inc clude finding gs, conclusio ons, and reccommendatio ons based on informatio on gathered d by the com mmittee and committee deliberatio ns. Factors affecting the future of family caregiving in the United States. The particular mix of caregiving activities and time commitments varies. (Request Permission) Unless otherwise indicated, all materials in this PDF are copyrighted by the National Academy of Sciences. International Standard Book Number-13: 978-0-309-XXXXX-X International Standard Book Number-10: 0-309-XXXXX-X Digital Object Identifier: 10.17226/23606 Library of Congress Control Number: 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; Reports are peer revviewed and are approved d by the Nattional Acade emies of Scie ences, Engin neering, and d Medicine. In Family caregiving in the new normal, edited by J. In multiple studies, caregiving for persons with dementia has been shown consistently to be one of the most demanding types of caregiving (Ory et al., 1999; Pinquart and Sorenson, 2007). , 2-6 Social and Demographic Trends Affecting Caregiving, 2-14 Conclusions, 2-20 References, 2-22 3 Family Caregiving Roles and Impacts Caregiving Trajectories, 3-1 Roles of Family Caregivers, 3-6 The Impact of Caregiving on the Caregiver, 3-15 Conclusions, 3-33 References, 3-34 4 Economic Impact of Family Caregiving Broad Impacts, 4-1 Out-of-Pocket Spending, 4-4 Employment-Related Costs to Caregivers, 4-4 Costs to Employers, 4-7 Societal Benefits, 4-8 Policies and Practices That Support Working Caregivers, 4-8 Private Employer Initiatives, 4-19 Conclusions, 4-22 References, 4-24 5 Programs and Supports for Family Caregivers of Older Adults Assessment Strategies, 5-5 Individual-Level Interventions, 5-7 Organizational Level, 5-24 Societal/Policy Level, 5-28 The Role of Technology in Caregiver Interventions, 5-29 The Pipeline for Caregiver Interventions, 5-32 Conclusions, 5-33 References, 5-35 6 Family Caregivers’ Interactions with Health Care and Long-Term Services and Supports The Current Paradigm and Its Consequences, 6-2 Committing to a New Paradigm: Person- and Family-Centered Care, 6-9 Conclusions, 6-30 xi PREPUBLICATION COPY: UNCORRECTED PROOF6 Copyright © National Academy of Sciences. Families Caring for an Aging America References, 6-31 7 Recommendations to Support Family Caregivers of Older Adults Introduction, 7-2 Recommendation 1, 7-5 Recommendation 2, 7-15 Recommendation 3, 7-15 Recommendation 4, 7-17 Appendixes A Acronyms and Glossary B Committee and Staff Biographies C Public Workshop Agendas D Number of Years and Percentage of Adult Life Spent Caring for an Older Adult E Methodology: NHATS and NSOC Surveys F Caregiving: The Odyssey of Becoming More Human G Caregiving Stories H HIPAA and Caregivers’ Access to Information xii PREPUBLICATION COPY: UNCORRECTED PROOF6 Copyright © National Academy of Sciences. A-1 B-1 C-1 D-1 E-1 F-1 G-1 H-1 Families Caring for an Aging America Boxes, Figures, and Tables BOXES S-1 Charge to the Committee on Family Caregiving for Older Adults, S-3 1-1 1-2 1-3 Sponsors of the Study, 1-2 Charge to the Committee on Family Caregiving for Older Adults, 1-3 State Units on Aging and Area Agencies on Aging, 1-6 2-1 Key Findings and Conclusions Regarding the Older Adult Population That Needs Caregiving and the Family Caregivers Who Help Them, 2-21 3-1 Key Findings and Conclusions: Family Caregivers’ Roles and the Impact on Their Mental and Physical Health, 3-32 4-1 4-2 4-3 Paid Leave and Caregiving, 4-11 Three Noteworthy Eldercare Workplace Programs, 4-21 Key Findings and Conclusions: Economic Impact of Family Caregiving, 4-22 5-1 5-2 Domains of Caregiver Assessment, 5-6 A Successful Intervention for Dementia Caregivers: Resources for Enhancing Alzheimer’s Caregiver Health II (REACH II), 5-9 An Example from a Community-Based Intervention, 5-12 Case Example of the COPE Intervention, 5-13 Key Findings and Conclusions: Programs and Supports for Family Caregivers of Older Adults, 5-34 5-3 5-4 5-5 6-1 6-2 Perspectives of Primary Care Physicians Who Care for Older Adults with Dementia, 6-26 Key Findings and Conclusions Regarding Family Caregivers of Older Adults Interactions with Health Care and Long-Term Services and Supports Systems, 6-30 7-1 Recommendations, 7-4 FIGURES 2-1 2-2 2-3 2-4 2-5 3-1 Number and percentage of older adults receiving assistance in the prior month by level of assistance, 2011, 2-4 High-need older adults, by dementia status and self-care needs, 2011, 2-5 Older adults as share of the U. population by percentage, 2012 to 2050, 2-16 The changing racial and ethnic diversity of the older adult population, 2010 to 2040 (in millions), 2-18 Projected distribution of the number of adult children for the frail older population, 2000-2040, 219 An example of a dementia care trajectory, 3-4 xiii PREPUBLICATION COPY: UNCORRECTED PROOF6 Copyright © National Academy of Sciences. Families Caring for an Aging America 3-2 3-3 3-4 4-1 4-2 Percentage of caregivers who helped every day or most days during the past month, by type of help, 2011, 3-8 Percentage of caregivers coordinating care and providing medical tasks during the past month, 311 Percentage of caregivers responding very much, somewhat, not so much to positive aspects of caregiving, 3-17 Percentage of caregivers reporting financial difficulties by the care recipient’s dementia status and level of impairment, 4-3 Employment status of family caregivers of older adults by sex, co-residence, relationship, race, education, and household income, 4-7 5-1 Organizational framework for reviewing family caregiving interventions, 5-4 6-1 Core concepts of person- and family-centered care, 6-11 TABLES 1-1 1-2 Administration for Community Living Programs That Support Caregivers of Older Adults, 1-8 U. Department of Veterans Affairs Programs and Services for Caregivers, 1-9 2-1 Projected Future Need for Long-Term Services and Supports at Age 65 in 2015-2019, by Gender, 2-6 Family Caregivers of Older Adults, Number and Percentage by Care Recipient’s Level of Need, 2011, 2-7 Average Number of Years That Caregivers of Older Adults Spent Caregiving at the Time of the Survey, 2-8 Estimated Average Number of Years and Percentage of Remaining Life Caring for an Older Adult, by Age Group, 2-10 Selected Demographic Characteristics of Family Caregivers, High-Need Family Caregivers, and the Overall U. Adult Population, by Percentage, 2011, 2-13 Family Relationships of Caregivers of Older Adults, by Care Recipient’s Level of Need, by Percentage, 2011, 2-14 Age, Race, and Hispanic Origin of the Older Adult Population, by Number and Percentage, 2012, 2-15 2-2 2-3 2-4 2-5 2-6 2-7 3-1 3-2 3-3 3-4 3-5 3-6 4-1 4-2 What Family Caregivers Do for Older Adults, 3-7 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, 3-9 Family Caregiver Reports of Emotional, Physical, and Other Difficulties by Care Recipient’s Dementia Status and Level of Impairment, by Percentage, 2011, 3-16 Summary of Findings on the Physical Health Outcomes of Family Caregiving of Older Adults, 322 Family Caregiving’s Social Impact by Care Recipient’s Dementia Status and Level of Impairment, by Percentage, 2011, 3-27 Risk Factors for Adverse Outcomes Due to Family Caregiving, 3-30 States with Expansions in Unpaid Family and Medical Leave, 4-10 Workers Without Employer-Paid Leave, by Average Wage Category and Weekly Work Hours, 2015, 4-12 xiv PREPUBLICATION COPY: UNCORRECTED PROOF6 Copyright © National Academy of Sciences. Families Caring for an Aging America 4-3 4-4 Characteristics of State Mandatory Paid Family and Medical Leave Programs, 4-16 Characteristics of State Mandatory Paid Sick Leave Laws, 4-18 5-1 5-2 Outcomes and Implementation of Selected Family Caregiver Interventions, 5-16 Challenges in Moving Family Caregiver Interventions from Research to Large-Scale Implementation. In addition, the care recipient’s own emotional response to his or her changing circumstances may require a higher level of emotional support from the caregiver. 5-18 Selected Strategies for Addressing Barriers to Intervention Implementation, 5-19 5-3 6-1 6-2 6-3 Barriers to Optimal Caregiver Involvement in Older Adults’ Care, 6-4 Elements of Person- and Family-Centered Care, 6-12 Selected Examples of How Medicare and Medicaid Provide Incentives for Person- and Family Centered Care for Older Adults, 6-15 xv PREPUBLICATION COPY: UNCORRECTED PROOF6 Copyright © National Academy of Sciences. Families Caring for an Aging America Copyright © National Academy of Sciences. Families Caring for an Aging America SUMMARY1 Family caregiving affects millions of Americans every day, in all walks of life. Caregivers may find themselves dealing with unfamiliar depressive symptoms, anxiety, irritability, or anger in the care recipient. GAGE, Expert, Center for Health Policy, Brookings Institution MARISSA GORDON, Senior Health Information Privacy Specialist, U. 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. Department of Veterans Affairs ix PREPUBLICATION COPY: UNCORRECTED PROOF Copyright © National Academy of Sciences. Families Caring for an Aging America 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. Samuels Foundation, Health Foundation of Western and Central New York, The John A. The committee appreciates the opportunity and support extended by the sponsors for the development of this report. Older adults with dementia or other conditions that severely impair cognitive function may also require constant supervision and hands-on assistance because of their functional limitations and behavioral symptoms. Liminality as a conceptual frame for understanding the family caregiving rite of passage: An integrative review.
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. 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. In addition, caregivers of high-need older adults also help with medication management (65 percent), medical tasks (20 percent), and with skin care wounds (35 percent) (see Table 3-2).
For inforrmation abou ut other pro oducts and activities of tthe Academ mies, please visit nationala academies.o org/whatwed do. They often share these responsibilities with a more proximal caregiver who provides assistance with personal care.
PR REPUBLIC CATION CO OPY: UNCOR RRECTED PROOFS Copyright © National Academy of Sciences. Families Caring for an Aging America COMMITTEE ON FAMILY CAREGIVING FOR OLDER ADULTS RICHARD SCHULZ (Chair), Director, University Center for Social and Urban Research, University of Pittsburgh MARIA P. Being separated from the care recipient complicates communication about the care recipients’ health and care needs, and poses formidable challenges to address those needs through service providers.
p medicine The three Academies work together as the National Accademies off Sciences, E Engineeringg, ovide indepe endent, obje ective analyssis and advicce to the na ation and and Medicine to pro conduct other activities to solve e complex problems and d inform pub blic policy decisions. The domains of the caregiving role include: assistance with household tasks, self-care tasks, and mobility; provision of emotional and social support; health and medical care; advocacy and care coordination; and surrogacy. Family involvement in care transitions of older adults: What do we know and where do we go from here?
The statementts and opinio ons containe ed in procee edings are th hose of the convenin participa ants and havve not been endorsed byy other partiicipants, the e planning ccommittee, or the Natio onal Academ mies of Scien nces, Engine eering, and M Medicine. For example, cancer caregivers were more likely than dementia caregivers to provide help in getting in and out of bed, whereas dementia caregivers were more likely to deal with incontinence. Long distance caregivers who live at least one hour from the care recipient are typically involved in providing social and emotional support, advanced care planning, financial assistance, and care-coordination.