Accommodating hearing impairedd classroom
CHARLES 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 WOLFF, Associate Professor, Department of Health Policy and Management, Bloomberg School of Public Health, Johns Hopkins University Study Staff JILL EDEN, Study Director KATYE MAGEE, Senior Program Assistant AMY BATCHELOR, Research Associate (through May 2015) KATHRYN ELLETT, U. Department of Health and Human Services Detail (April through July 2015) GUZ ZIMMERMAN, Research Associate (starting July 2015) SHARYL NASS, Director, Board on Health Care Services Consultant VICKI FREEDMAN, Populations Study Center, University of Michigan v 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 Reviewers This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. Predictors and consequences of perceived lack of choice in becoming an informal caregiver. PREPUBLICATION COPY: UNCORRECTED PROOFS Copyright © National Academy of Sciences. Families Caring for an Aging America FAMILY CAREGIVING ROLES AND IMPACTS TABLE 3-1 What Family Caregivers Do for Older Adults Domain Household tasks Caregivers’ Activities and Tasks • • • • • • Self-care, supervision, and mobility • • • • • • Help with bills, deal with insurance claims, and manage money Home maintenance (install grab bars, ramps, and other safety modifications; repairs, yardwork) Laundry and other housework Prepare meals Shopping Transportation • Bathing and grooming Dressing Feeding Supervision Management of behavioral symptoms Toileting (getting to and from the toilet, maintaining continence, dealing with incontinence) Transferring (e.g., getting in and out of bed and chairs, moving from bed to wheelchair) Help getting around inside or outside Emotional and social support • • • • • • Provide companionship Discuss ongoing life challenges with care recipient Facilitate and participate in leisure activities Help care recipient manage emotional responses Manage family conflict Troubleshoot problems Health and medical care • • • • • • • • Encourage healthy lifestyle Encourage self-care Encourage treatment adherence Manage and give medications, pills, or injections Operate medical equipment Prepare food for special diets Respond to acute needs and emergencies Provide wound care Advocacy and care coordination • • • Seek information Facilitate person and family understanding Communicate with doctors, nurses, social workers, pharmacists, and other health care and long-term services and supports (LTSS) providers Facilitate provider understanding Locate, arrange, and supervise nurses, social workers, home care aides, home-delivered meals, and other LTSS (e.g., adult day services) Make appointments Negotiate with other family member(s) regarding respective roles Order prescription medicines Deal with insurance issues • • • • • • • Surrogacy • Handle financial and legal matters • Manage personal property • Participate in advanced planning • Participate in treatment decisions SOURCES: Spillman et al., 2014; Wolff, 2007. In Public health for an aging society, edited by T. 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. PREPUBLICATION COPY: UNCORRECTED PROOFS Copyright © National Academy of Sciences. 3-7 Families Caring for an Aging America 3-8 FAMILIIES CARING G FOR AN AGING AMER RICA FIGURE 3-2 Percentaage of caregiv vers who helped every day or most dayss during the past month, byy type of help, 20 011. vii 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 Acknowledgments The committee and staff are indebted to a number of individuals and organizations for their contributions to this report. Spousal suffering and partner’s depression and cardiovascular disease: The Cardiovascular Health Study. Self-care activities are bathing, dressing, eating, toileting or getting in and out of bed. The following individuals provided testimony to the committee: DONNA BENTON, Director, Older Adults Pacific Clinic MARIE A. The American Journal of Geriatric Psychiatry 17(3):246-254. “Probable dementia” includes individuals whose doctor said they had dementia or Alzheimer’s disease and individuals classified as having probable dementia based on results from a proxy screening instrument and several cognitive tests.
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. Many within the Health and Medicine Division of the National Academies of Sciences, Engineering, and Medicine were helpful to the study staff. PREPUBLICATION COPY: UNCORRECTED PROOFS Copyright © National Academy of Sciences. Families Caring for an Aging America 3-10 FAMILIES CARING FOR AN AGING AMERICA Providing Emotional and Social Support When older adults first need caregiving because of increasing frailty or onset of a debilitating disease, they need emotional and social supports that are different from the usual exchanges among family members (Brody, 1985). We would like to thank Patrick Burke, Chelsea Frakes, Greta Gorman, Nicole Joy, Tracy Lustig, Bettina Ritter, and Lauren Shern. One important change is in the balance of reciprocity in the caregiver−care recipient relationship. x PREPUBLICATION COPY: UNCORRECTED PROOF Copyright © National Academy of Sciences. Families Caring for an Aging America Contents Summary 1 Introduction Context for This Report, 1-3 A Vision for the Future, 1-12 Methods of the Study, 1-13 Orientation to the Organization of This Report, 1-15 References, 1-16 2 Older Adults Who Need Caregiving and the Family Caregivers Who Help Them Prevalence of the Need for a Caregiver, 2-1 Who Are the Family Caregivers of Older Adults? With increasing needs, the care recipient may be able to give less to the relationship while needing more from it, despite efforts to maintain some reciprocity (Pearlin et al., 1990). Caregiver well-being: A multidimensional examination of family caregivers of demented adults. PREPUBLICATION COPY: UNCORRECTED PROOFS Copyright © National Academy of Sciences. Families Caring for an Aging America 3-36 FAMILIES CARING FOR AN AGING AMERICA Gibbons, S. , 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.