Families Caring for an Aging America (2016) / Chapter Skim
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1 Introduction
1 Introduction
Pages 17-42
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From page 17... ...
The committee's charge was to develop recommendations to support the nation's family caregivers so that they can effectively advocate and care for older adults without harm to themselves. The report examines what is known about the characteristics of caregivers and the older adults they care for, the evolving role of caregivers and the impact of caregiving on their health and well-being, the economic impact of caregiving especially on those caregivers who are employed, the evidence on the effectiveness of existing caregiver programs and interventions, and the challenges that caregivers face in health care and long-term care systems.
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1 to our older adult population. Many are unaware that, today, family caregivers are also expected to provide complex health care services once only delivered by licensed health care personnel in a hospital or other institutional setting.
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The Committee on Family Caregiving for Older Adults was appointed in October 2014 to conduct the study and prepare this report. The committee included 21 individuals with research or clinical experience related to family caregiving of older adults in home- and community-based settings; physicians' offices; clinics; hospitals; VA facilities; and senior residential, assisted living, and skilled nursing facilities.2 The committee members had specific expertise in gerontology, geriatric psychiatry, social work, home- and community-based services, psychology, anthropology, diversity and health disparity issues, nursing and medicine, health services research, health policy, economics and finance, employee benefits and workplace 2 Due to personal circumstances, three members of the committee withdrew from the study before its completion.
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In developing policy regarding family caregiving of older adults, it is important to recognize that not all older adults need a family caregiver and not all family caregivers need support or services. As Chapter 2 will describe, the committee focused on the overall population of caregivers of
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It does not use the terms "informal" or "unpaid" although they are often used in the economics and medical literature to differentiate family caregivers from "formal" caregivers -- paid direct care workers (such as home care aides) or health and social service professionals.
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Background on Federal Involvement in Family Caregiving Historically, the Medicare and Medicaid programs -- like other thirdparty payers -- have focused on beneficiaries with only limited, if any, attention to their caregivers. Thus, their impact on family caregivers is indirect (Doty and Spillman, 2015)
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Administration for Community Living National Family Caregiver Support Program (NFCSP) In 2000, Congress explicitly recognized the importance of family caregivers by creating NFCSP under the Older Americans Act -- the first and only federal program to specifically address the needs of family caregivers of older individuals and also grandparents (and other relatives)
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members Aging and Disability • Grants to states to provide information $6.1 million • CGs of older adults • 86,871 CGs age 60+ Resource Centers to CGs and improve access to LTSS and persons with disabilities Native American • Grants to tribal organization to provide $6 million • American Indian, • 92,259 CGs Caregiver Support CGs with respite, training, information Alaskan Native, and Initiative and outreach, counseling, and support Native Hawaiian CGs groups of older adults with a chronic disability or illness
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of children and younger adults with disabilities. Unless noted otherwise, data are for the most recent 12-month period available.
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Department of Veterans • Provides training and • CGs of veterans See below Affairs (VA) Caregiver Support education, support, and Program coordination for caregivers (CGs)
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who provide support, referral to local resources, and care coordination • Coordinators act as intermediaries between CGs and VA staff • Every VAMC is required to have one full-time CSC • Peer Support for Caregivers • Trained volunteer peer • CGs of veterans • More than 300 CGs trained mentors are assigned to (2012 to 2015) CGs to provide guidance to resources and decrease feelings of isolation • Resources for Enhancing • Skills-building intervention • CGs of veterans with Alzheimer's • 1,208 VA clinical staff Alzheimer's Caregiver designed to provide support, disease or related dementias, spinal (social workers, counselors, Health (REACH)
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support groups • Topics include techniques for problem solving, behavioral management, stress reduction, and coping VA Geriatrics and Extended Care • dult Day Health Care A • Day programs for social • Older veterans who need • provided and/or purchased VA (ADHC) interaction, support, and assistance with activities of ADHC for 16,604 unique recreation; may be provided daily living, isolated, or whose veterans by the VA or a community CGs need respite provider closer to veteran's residence • Homemaker and Home • Provides homemaker or home • Veterans who need skilled services, • 101,843 veterans Health Aide Program health aides to come to the case management, and help with home self-care
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. ALS = amyotrophic lateral sclerosis; I/DD = intellectual/developmental disabilities; MS = multiple sclerosis; PTSD = posttraumatic stress disorder.
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The OAA requires that AAAs offer five core service areas: elder rights, caregiver supports, nutrition, health and wellness activities, and supportive services. AAAs may offer additional services past these core areas and may also service additional populations including dis abled individuals of all ages and veterans.
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From page 31... ...
ACL is currently conducting the first national evaluation of NFCSP's implementation at the state and local levels; its impact on family caregivers and care recipients; and its integration with and impact on long-termcare policies and home- and community-based service systems (Barretto et al., 2014; Link, 2015/2016) .6 The implementation evaluation found that NFCSP is the only specific source of caregiver support provided by AAAs in three-quarters of the service areas (Lewin Group and ACL, 2016)
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. These services include clinical services as well as an array of important caregiver supports, including adult day health care, homemaker/home health aide services, respite care, and hospice care (see Table 1-2)
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7 This program focuses on improving competencies in geriatrics among not only health professionals, but also family caregivers and direct care workers. Although GWEP awards most of its funding to training primary care and direct service personnel, its awardees are also tasked with educating and training older adults and caregivers.
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From page 34... ...
, the leading edge of the baby boomers will enter their 80s, placing new demands on both the health care and LTSS systems. Despite this reality, there is a significant disconnect between providers' continued reliance on family caregivers, their exclusion of family caregivers from care planning, and their lack of attention to providing meaningful caregiver supportive services.
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The first workshop focused on caregiver experiences, their interactions with the health care and LTSS systems, and relevant legal issues. The second workshop examined the implications of demographic trends on family caregiving, meeting the needs of diverse caregiver populations broadly defined to include race and ethnicity as well as rural and lesbian, gay, bisexual, and transgender (LGBT)
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From page 36... ...
The workgroups conducted in-depth reviews of the epidemiology of caregiving; the tasks that caregivers undertake and how caregiving affects their mental and physical health; the economic impact of caregiving (overall and in the workplace) ; the effectiveness of programs for supporting caregivers; and caregivers' interactions with the health care and LTSS systems.
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. Different terms are also used to describe family caregivers who are engaged in the most intensive and timeconsuming tasks or who are supporting care recipients with significant, long-term impairments.
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From page 38... ...
Chapter 4, Economic Impact of Family Caregiving, examines the economic impact of unpaid caregiving on family caregivers of older adults who need help because of health or functional limitations and explores which caregivers are at greatest risk of severe consequences. Workplace and government policies and programs designed to support caregivers and/or mitigate these effects are also discussed.
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2006. Preliminary experiences of the states in implement ing the National Family Caregiver Support Program: A 50-state study.
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2015/2016. The Administration for Community Living: Programs and initiatives providing family caregiver support.
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In Family caregiving in the new normal, edited by J
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