Families Caring for an Aging America (2016) / Chapter Skim
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Pages 1-16
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For decades, demographers, gerontologists, health researchers, health care professionals, economists, and other experts have called attention to the nation's rapidly aging population. However, little action has been taken to prepare the health care and LTSS systems for this unprecedented demographic shift.
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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, and Tufts Health Plan Foundation, as well as the U.S.
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The report will also review the evidence of the effectiveness of potential sup ports for family caregivers and care recipients across a range of settings, includ ing, for example, in medical homes and other primary care settings, home- and community-based settings, acute care hospitals, and residential facilities. These might include, for example, models of team-based care that include the family caregiver as member; approaches to training providers regarding the caregiver role; and models for training caregivers for their various roles.
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In order to fulfill the numerous roles that they play, family caregivers must interact with a wide range of providers in a variety of systems. They communicate with physicians, physician assistants, nurses, nurse practitioners, social workers, psychologists, pharmacists, physical and occupational therapists, certified nursing assistants, home health and personal care aides, and others.
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Numerous factors predispose caregivers to adverse outcomes, including sociodemographic factors; intensity or type of caregiving; perceptions of the care recipient's physical, psychological, and existential suffering; lack of choice in taking on the caregiving role; the caregiver's health and physical functioning; the social and professional supports they receive; and the care recipient's home physical environment. Caregivers transitioning from a lowto high-intensity role also report greater adverse effects compared to others.
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Well-designed randomized controlled trials (RCTs) have shown that education and skills training can improve caregiver confidence in managing daily care challenges; caregiver skill building and environmental modifications can improve quality of life for family caregivers and care recipients.
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Depart ments of Labor and Veterans Affairs, other federal agencies, and private-sector organizations with expertise in family caregiving, develop and execute a National Family Caregiver Strategy that, administratively or through new federal legislation, explicitly and systematically addresses and supports the essential role of family caregivers to older adults. This strategy should include specific measures to adapt the nation's health care and long-term services and supports (LTSS)
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Family caregivers are typically provided little, if any, information and training to carry out the complicated medical procedures, personal care, and care coordination tasks they are expected to provide. Indeed, the lack of systematic assessment of family participation in health and LTSS not only affects the experience of caregivers and care recipients, it also precludes knowledge of how their involvement influences the quality of clinical care and social services, limits the spread of evidence-based interventions that strengthen the well-being of family caregivers and their ability to promote and provide quality care, and undermines credible accounting of the value family caregivers bring to the health care delivery system and to society.
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In Medicaid, many states formally or informally assess family caregivers as part of the process for developing LTSS care plans. In the VA, the Caregivers and Veterans Omnibus Health Services Act of 2010 established a mechanism for reimbursement/workload credit for services provided to caregivers (mainly of younger veterans)
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Given the growing diversity of the older adult population as well as their caregivers, cultural competence in exercising these skills is essential to their effectiveness. A range of professionals and direct care workers are likely to serve older people with family caregivers -- physicians, nurses, physician assistants, social workers, psychologists, pharmacists, occupational therapists,
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Office for Civil Rights to clarify caregivers' access to information by providing administrative guidance to health care and social service providers regarding the permitted uses and disclosures of protected health information to family caregivers and encourage providers to train their workforce regarding that clarification; • convening professional societies, training programs, accrediting bodies, and other organizations to develop educational curricula and to support their systematic evaluation and implementation; and • convening and collaborating with state agencies and professional organizations to incorporate competencies into standards for licen sure and certification. RECOMMENDATION 1-d: Increase funding for programs that provide explicit supportive services for family caregivers such as the National Family Caregiver Support Program and other rel evant U.S.
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Four states -- California, New Jersey, New York, and Rhode Island -- have enacted paid family leave statutes, and five states -- California, Connecticut, Massachusetts, Oregon, and Vermont -- have paid sick leave laws that require employers to allow workers a reasonable number of earned sick days to care for an ill family member (including some older adults)
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These include, for example, refundable tax credits to increase caregiver incomes; Social Security caregiving credits to reduce the impact of foregone wages on retirement benefits; including family caregiver status as a protected class under federal employment discrimination laws; and providing employers with guidance and training on best practices to better support workers with caregiving responsibilities. Exploring the feasibility of these options will require economic impact assessments that include not only the caregiver but also employers and federal and state agencies.
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that the family caregiver will need to perform at home. In addition to efforts by the federal government to build on this experience in developing and implementing the recommended Caregiver Strategy, states can also independently advance caregiver and care recipient wellbeing by learning from other states and adopting best practices.
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The National Family Caregiver Strategy should address the needs and values of diverse family caregivers. The strategy, including all of the above recommendations, should include specific goals for advancing support for diverse caregivers and the biannual report should specifically address progress of the strategy in meeting these goals.
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