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7 Recommendations to Support Family Caregivers of Older Adults
Pages 253-274

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From page 253...
... A number of factors underscore the urgency of addressing the needs of family caregivers of older adults. The committee's review of the older population and their caregivers, presented in Chapter 2, indicates a growing gap between the demand for and supply of family caregivers for older adults.
From page 254...
... In order to fulfill the numerous roles that they play, family caregivers must interact with a wide range of providers and navigate within a variety of systems. They interact with physicians, physician assistants, nurses, nurse practitioners, social workers, psychologists, pharmacists, physical and occupational therapists, direct care workers (e.g., certified nursing assistants, home health aides, and personal care aides)
From page 255...
... The committee's work calls into question practices that too often assume the availability of family caregiving without adequate support services that take into account both the individual and the family. In fact, family caregivers often feel invisible, isolated, and unprepared for the tasks they are expected to perform, and caregiving -- especially when it involves an intensive commitment over the long term -- carries significant costs.
From page 256...
... Department of Health and Human Services, in col laboration with the Secretaries of the U.S. Departments 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.
From page 257...
... R  ECOMMENDATION 1-d: Increase funding for programs that provide ex plicit supportive services for family caregivers such as the National Family Caregiver Support Program and other relevant U.S. Department of Health and Human Services programs to facilitate the development, dissemination, and implementation of evidence-based caregiver intervention programs.
From page 258...
... Department of Health and Human Ser vices, in collaboration with the Secretaries of the U.S. Departments 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, administra tively or through new federal legislation, explicitly and systemati cally addresses and supports the essential role of family caregivers to older adults.
From page 259...
... Paradoxically, family caregivers may be excluded from treatment decisions and care planning but at the same time implicitly assumed to be available and expected to perform necessary health management and personal tasks, and care coordination activities to implement older adults' care plans. Providers' assumptions that family caregivers have the requisite knowledge, skills, and resources to administer care may put family caregivers and the adults they care for in harm's way.
From page 260...
... Given the growing national commitment to accountability and efficiency in care delivery, the committee concludes that the time is ripe to elevate family-centered care alongside person-centered care to the forefront of delivery system reform -- rationalizing the roles of family caregivers and better supporting their involvement in the delivery process. Achieving that goal will require systematic attention to the identification, assessment, and support of family caregivers throughout the care delivery process by • identifying family caregivers in both the care recipient's and the caregiver's medical record; • screening family caregivers to identify those who are at risk them selves, or whose circumstances place the older adults they assist in harm's way; • assessing family caregivers' strengths, limits, needs, and risks across the full range of expected tasks -- medical care, personal care, and coordination -- and that, at a minimum, asks family caregivers about their own health and well-being, level of stress, and types of training and supports they might need to continue their role; and • assuring that identification, screening, and appropriate caregiver assessment occurs at each point in care delivery for the care recipient -- including delivery of publicly funded LTSS, annual well ness exams, physician visits, admission and discharge for hospitals and emergency rooms, and chronic care coordination and care transition programs.
From page 261...
... Innovative delivery mechanisms, such as accountable care organizations and other models of integrated health care services, and value-based payment methods implicitly encourage providers (through shared savings for quality care at lower costs) to actively engage family caregivers as a resource in the care delivery process.
From page 262...
... RECOMMENDATION 1-c: Strengthen the training and capac ity of health care and social service providers to recognize and to engage family caregivers and to provide them evidence-based sup ports and referrals to services in the community. To ensure high-quality person- and family-centered care by the health and LTSS workforce, providers should see family caregivers not just as a resource in the treatment or support of an older person, but also as both a partner in that enterprise and as someone who may need information, training, care, and support.
From page 263...
... 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
From page 264...
... and other federal research agencies. A robust body of research demonstrates that interventions aimed at supporting caregivers can significantly improve well-being, quality of life, and quality of care for both family caregivers and care recipients.
From page 265...
... Specifically, caregiver interventions are more likely to be effective when they • address multiple areas of caregiver risk or need, including their own self-care and preventive care needs; • actively involve, rather than simply instruct, caregivers in learning and applying a particular skill; and • continue over an extended period of time or provide episodic "booster" support over the duration of caregiving. Although some progress has been made in integrating research-based caregiver intervention strategies into existing health and LTSS systems, policy makers, managers, and practitioners should implement more intensive strategies to promote the dissemination and adoption of evidence-based caregiver supports throughout the health and LTSS delivery system.
From page 266...
... Later, in September, the President signed an Executive Order requiring federal contractors to offer their employees up to 7 days of paid sick leave annually, including paid leave allowing for family care. Four states -- California, New Jersey, New York, and Rhode Island -- have established access to paid family leave, and five states -- California, Connecticut, Massachusetts, Oregon, and Vermont -- have enacted paid sick leave statutes that require employers to allow workers a specific number of earned sick days to deal with personal illness or to take certain family members (including older adults)
From page 267...
... Although current awareness and use of family leave programs seem far more focused on new parents than on family caregivers with eldercare responsibilities, these programs have the potential both to facilitate family caregiving and to alleviate its economic hardships. Furthermore, actions to assure family caregivers' immediate and longterm economic security are not limited to leave policies.
From page 268...
... Data from both sources can be used to identify policy targets for intervention that can reduce preventable illness and unnecessary service use and promote better health outcomes for family caregivers and care recipients alike. The systematic development of a multisource data collection system would require a wide range of expertise and input from survey methodologists, statisticians, health care and LTSS providers, researchers, family caregivers themselves, and policy makers from federal, state, and local agencies such as the Agency for Healthcare Research and Quality, Area Agencies on Aging, Bureau of Labor Statistics, Centers for Medicare & Medicaid Services (CMS)
From page 269...
... Knowledge advancement is further hampered by insufficient funding for translation as well as for dissemination and implementation activities; lack of knowledge among providers, health and human service organizations, and administrators of available evidence-based programs; and programmatic barriers to accommodation of new practices. Progress in caregiver support requires a new approach to research across federal agencies including the Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention, CMS, and NIH; the Patient-Centered Outcomes Research Institute; and private foundations to support large-scale, multisite research studies to evaluate efficacy and cost-effectiveness of a range of caregiver intervention strategies.
From page 270...
... All the above state experiences are likely to provide important insights to other states seeking to adopt caregiver supports. Not only can the federal government build on these lessons in developing and implementing the committee's recommended National Family Caregiver Strategy, but states 2  Includes the District of Columbia.
From page 271...
... The fund might also foster dialogue and collaboration between health care and LTSS organizations to improve coordination among hospitals, local Area Agencies on Aging, and other community-based organizations to improve the older adults' discharge from hospital to home and better support caregivers as they manage the transition and provide or arrange for home care. The Obama Administration has established two innovation funds that could serve as possible models for a caregiver innovation fund: the Investing in Innovation Fund and the Social Innovation Fund (Office of Social Innovation and Civic Participation, 2016a,b)
From page 272...
... Nonprofit innovation funds have found success investing in projects that cover similar topics to the recommended caregiver innovation fund. The Innovation Fund of the California Health Care Foundation, for example, is investing in existing health care technologies with the potential to significantly improve the quality of care, lower costs of care, or improve Californians access to care (CHCF, 2016)
From page 273...
... • Monitoring is conducted in a way that allows for meaningful data on the health, well-being, quality, and outcomes of care for diverse family caregivers. REFERENCES3 CHCF (California Health Care Foundation)


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