This report raises serious concerns about the current state of family caregiving of older adults in the United States. A confluence of social and demographics trends along with the increasing complexity of our health care and long-term services and supports (LTSS) systems have substantial implications for the nation’s family caregivers. These trends, described in the previous chapters, indicate not only a growing demand for families to provide eldercare but also growing evidence that caregiving itself poses risks—mental, physical, and economic—for some people.
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. The demand for caregivers is increasing significantly not only because of sheer numbers but also because the fastest growing cohort of older adults in the United States are those age 80 and older—the age when people are most likely to have a significant physical or cognitive impairment or both. At the same time, the size of American families is shrinking and the makeup of families is changing as more people do not have children, never marry, divorce, or blend families through remarriage. Moreover, half of family caregivers are employed.
Chapter 3 described the increasingly complex and demanding roles that caregivers are expected to take on. Family caregivers—especially women—have always provided the lion’s share of LTSS to older adults with impair-
ments. Today, they are also tasked with managing difficult technical and medical procedures and equipment in older adults’ homes, overseeing medications, and monitoring symptoms and side effects. Caregiving’s impact is highly individual and dependent on personal and family circumstances. For some people, caregiving can instill confidence, provide meaning and purpose, enhance skills, and bring the caregiver closer to the older adult. For others, caregiving takes a toll. An extensive literature finds that, compared to non-caregivers, family caregivers of older adults are more likely to experience emotional distress, depression, anxiety, or social isolation. Some caregivers, compared to others, are more likely to report being in poor physical health and have elevated levels of stress hormones or higher rates of chronic disease. The intensity and duration of caregiving and the older adult’s level of impairment are consistent predictors of negative health effects. Family members who spend long hours caring for older relatives with advanced dementia, for example, are especially at risk. Other risk factors include low socioeconomic status, high levels of perceived suffering of the care recipient, living with the care recipient, lack of choice in taking on the caregiving role, poor physical health of the caregiver, lack of social support, and a physical home environment that makes care tasks difficult.
Chapter 4 reviewed the economic risks associated with family caregiving of older adults—finding that research consistently shows that family caregivers of significantly impaired older adults are particularly vulnerable to financial harm. Caregivers may lose income, Social Security and other retirement benefits, and career opportunities if they have to cut back on work hours or leave the workforce. They may also incur substantial out-of-pocket expenses that may undermine their own future financial security.
Chapter 5 described the growing body of research providing important insights into how to effectively support family caregivers. The most effective interventions begin with an assessment of caregivers’ risks, needs, strengths, and preferences. Education and skills training can improve caregiver confidence and ability to manage daily care challenges. Counseling, self-care, relaxation training, and respite programs can improve both the caregiver’s and care recipient’s quality of life. Some research also suggests that providing services, such as personal counseling and care management, may delay the care recipient’s institutionalization and reduce re-hospitalization.
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), and others. They serve as key sources of information about older adults’ health histories, the medications they are taking, past diagnoses, previous treatments and
surgeries, and adverse reactions to any drugs (especially if the older adult is forgetful or has dementia). They represent older adults in dealings with home health care agencies, physicians’ and other providers’ offices, hospitals, pharmacies, assisted living facilities, and nursing homes. Yet, the organizations and systems that serve older adults—and the third-party payers that finance most care—too often act as barriers to caregivers’ effective engagement even when the caregiver is expected to coordinate and provide care.
The committee’s review of family caregiving for older Americans confirms how essential family caregivers are to both health care and LTSS for older Americans. The committee recognizes that family caregiving for older adults is, and will always be, an intensely personal issue. But the committee also recognizes that family caregiving has become a critical issue of public policy. 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. Furthermore, the nation faces a growing gap between the numbers of older people in need of support and the numbers of family members able and willing to support them.
The time has come for public acknowledgment of caregiving families—to make caregiving an integral part of the nation’s collective responsibility for caring for its older adult population. Family caregivers are the mainstay of support for older persons with a chronic, disabling, or serious health condition. In today’s world, family caregivers cannot be expected to provide complex care and support on their own. Family caregivers need greater recognition, information, and meaningful support to help them care for older relatives or friends, and to maintain their own health, financial security, and well-being.
To that end, the committee calls for a transformation in the policies and practices affecting the role of families in the support and care of older adults. Today’s emphasis on person-centered care needs to evolve into a focus on person- and family-centered care. The committee’s recommendations are presented in Box 7-1 and described below.
The committee recognizes that a strategy to effectively engage and support family caregivers of older Americans cannot be adopted and implemented overnight. In many cases, policy initiatives will have to be developed and evaluated. Implementation will require substantial administrative
time and managerial investment. Effectiveness over time will depend on continued improvement through research, evaluation, and experience. And new policies will carry new costs that should be recognized and accounted for. Caregiver supports, like paid family leave, will entail new expenditures that should be financed. Evidence indicates that some portion of new investments will be offset by savings—from reductions in use of nursing home, home health, emergency room, and inpatient hospital care. The committee does not assume, however, that these savings will be sufficient to fully support this report’s recommendations. Fundamental to the strategy we call for should be both rigorous evaluation and transparency as to costs as well as benefits and, as appropriate, sufficient financing should be secured to support investments that improve family caregivers’ health, economic, and social well-being.
The committee also recognizes that the context for this report is a time of economic constraints, concerns about future financing of Medicare and Social Security, a wide range of competing demands for public dollars, and deep divisions among Americans about the role and size of government. Nevertheless, the rapid aging of the U.S. population and its impact on families and health care expenditures should not be ignored. If the needs of our older adults’ caregivers are not addressed, we, as a society, risk compromising the well-being of our elders and their families. Failure to take on these challenges also means a lost opportunity to discover the potential societal benefits of effectively engaging and supporting family caregivers in the care of older adults—both economic and otherwise. The public’s investment in family caregiving for older adults should be carefully considered and public dollars shepherded responsibly. As federal and state agencies move to develop new programs and supports to address the needs of family caregivers, it will be important to prioritize the needs of the most vulnerable caregivers and tailor eligibility appropriately.
RECOMMENDATION 1: The committee calls upon the Administration that takes office in January 2017 to take steps to address the health, economic, and social issues facing family caregivers of older Americans. Specifically, the committee recommends that:
The Secretary of the U.S. Department of Health and Human Services, 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, 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) systems and workplaces to effectively and respectfully engage family caregivers and to support their health, values, and social and economic well-being, and to address the needs of our increasingly culturally and ethnically diverse caregiver population.
The Secretaries should publicly announce and begin to implement the strategy by
- executing steps allowable under current statutory authority;
- proposing specific legislative action, where appropriate, to address additional steps;
- convening and establishing partnerships with appropriate government (federal, state, and local) and private-sector leaders to implement the strategy throughout education, service delivery, research, and practice; and
- addressing fully and explicitly the needs of our increasingly culturally and ethnically diverse caregiver population.
The Secretaries should issue biannual reports on progress and actions of the National Family Caregiver Strategy.
This strategy should include the following steps:
RECOMMENDATION 1-a: Develop, test, and implement effective mechanisms within Medicare, Medicaid, and the U.S. Department of Veterans Affairs to ensure that family caregivers are routinely identified and that their needs are assessed and supported in the delivery of health care and long-term services and supports.
Despite the integral role that family caregivers play in the care of older adults with disabilities and complex health needs, they are often marginalized or ignored in the delivery of health care, in LTSS, and in public policy. 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.
The research reviewed in this report provides compelling evidence of the need for caregiver assessment. Caregiver’s circumstances vary widely and in ways that affect their availability, capacity, and willingness to assume
critical responsibilities. Evidence from randomized clinical trials indicates that most effective interventions begin with an assessment of the caregiver’s risks, needs, strengths, and preferences. Yet, most health and LTSS providers do not assess the health, skills, employment, and willingness of family caregivers and provide them little, if any, 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 family 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.
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 themselves, 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 wellness exams, physician visits, admission and discharge for hospitals and emergency rooms, and chronic care coordination and care transition programs.
Key initial steps to implementing this recommendation will require identification and refinement of caregiver assessment tools appropriate to the care delivery context of the care recipient, identification and training
of assessors, and evaluation of provider workflow to determine where and when assessments take place.
RECOMMENDATION 1-b: Direct the Centers for Medicare & Medicaid Services to develop, test, and implement provider payment reforms that motivate providers to engage family caregivers in delivery processes, across all modes of payment and models of care.
As the predominant payers of care for older adults, Medicare and Medicaid are essential to motivating appropriate provider practice. Under the status quo, there are few financial incentives for providers to identify, engage, or support an older adult’s caregiver. The organization, delivery, and financing of health care and LTSS are designed to provide needed services to individuals not families. Caregiver interventions shown to be effective, and potentially cost saving (in the aggregate), will not proliferate if payment policy discourages identification of caregivers who might benefit from their use.
Chapter 6 described the encouraging steps that the Centers for Medicare & Medicaid Services (CMS) has made to advance recognition of family caregivers in Medicare and Medicaid coverage, payment, and delivery policies. For example, as a condition of participation in Medicare, hospitals are now expected to engage and support family caregivers in the discharge planning process. However, Medicare is rapidly moving away from fee-for-service (FFS) payment to managed care and other models of payment and care delivery.
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. In some state Medicaid programs, assessment of family caregivers’ needs is part of care planning for beneficiaries eligible for home- and community-based services. Yet, neither CMS nor the states have paid explicit attention to evaluating the effect of these innovations on caregiving. The Center for Medicare & Medicaid Innovation (CMMI), for example, is specifically charged with testing new payment and service delivery models, but its evaluations neither measure nor assess important caregiver and care recipient outcomes. In the U.S. Department of Veterans Affairs (VA), the Caregivers and Veterans Omnibus Health Services Act of 20101 established a mechanism for reimbursement/workload credit for services provided to family caregivers but the focus is primarily on caregivers of younger veterans.
1 Public Law 111-163.
Thus, for the most part, these advances create the potential for, rather than a commitment to, developing effective payment practices that support provider engagement with family caregivers. That commitment requires
- the development and application of payment mechanisms to promote providers’ interaction with family caregivers when care recipients are not present;
- the development and application of performance standards that hold providers accountable for caregiver engagement, training, and support in accessing the full range of health care and LTSS they require, by explicitly including caregiver outcomes in quality measures;
- the inclusion of family caregivers in CMS payment and service delivery demonstrations; and
- adherence to the National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care to provide quality care that is effective, equitable, understandable, respectful, and responsive to older adults’ and caregivers’ cultural health beliefs and practices, preferred languages, health literacy, and other communication needs.
RECOMMENDATION 1-c: Strengthen the training and capacity of health care and social service providers to recognize and to engage family caregivers and to provide them evidence-based supports 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. Achieving and acting on that perspective requires that providers have the skills to recognize a caregiver’s presence, assess whether and how the caregiver can best participate in overall care, engage and share information with the caregiver, recognize the caregiver’s own health care and support needs, and refer caregivers to needed services and supports.
It is also important that providers understand that the Health Insurance Portability and Accountability Act (HIPAA) does not preclude sharing older adults’ health records with caregivers. Misinterpretation of the statute appears to be common and may prevent caregivers from obtaining timely information about care recipients’ health status and treatment.
A wide range of professionals and direct care workers are likely to serve
older adults with family caregivers—physicians, nurses, social workers, psychologists, pharmacists, occupational therapists, physical and other rehabilitation therapists, certified nursing assistants, physician assistants, and others. Professional organizations in social work and nursing have led the way in taking steps to establish standards for person- and family-centered care. Similar efforts are needed across the health care and social service professions. The Health Resources and Services Administration’s Geriatric Workforce Enhancement Program (GWEP) provides some needed training in geriatrics among health professionals as well as family caregivers and direct care workers. However, with current funding, the GWEP caregiver curriculum focuses primarily on dementia and reaches only a small fraction of the relevant providers. Work to date falls far short of a systematic and comprehensive effort that should include
- identification of specific competencies, by provider type, to demonstrate effective practice, including competencies related to working with diverse family caregivers;
- development of educational curricula and training to instill those competencies;
- incorporation of those competencies into requirements for licensure, certification, and accreditation;
- articulation of standards of practice; and
- evaluation of practice using standardized quality-of-care metrics.
The federal government, in collaboration with professional societies, education programs, licensure and certification bodies, accrediting bodies, and other organizations, should move this effort forward. Specifically, action requires
- federal support for the development and enforcement of competencies for identifying, assessing, and supporting family caregivers by health care and human service professionals and regulatory and accrediting organizations;
- the U.S. Department of Health and Human Services (HHS) 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 licensure 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 relevant U.S. Department of Health and Human Services programs to facilitate the development, dissemination, and implementation of evidence-based caregiver intervention programs.
National policy regarding family caregivers exists mainly in narrowly focused programs. Most of the related federal programs have more indirect than direct implications for family caregivers of older adults because the caregivers are not the primary intended beneficiaries. In 2000, Congress explicitly recognized the importance of caregivers by creating the National Family Caregiver Support Program (NFCSP) under the Older Americans Act, the first and only federal program to specifically address the needs of family caregivers of older individuals and help them access services. The NFCSP is a program of the Administration for Community Living (ACL). In 2015, the program served more than 900,000 individual family caregivers of older adults, providing counseling, training, respite care, and information about available services and supports or assistance with getting access to services. The annual appropriation for the program is around $150 million and has not increased since 2000 despite the marked growth in the older adult population and the increasingly complex services that caregivers are expected to provide. The funding is inadequate and Congress should consider increasing its appropriation. The evaluation of the NFCSP that is currently underway may provide guidance in defining priorities for targeting increased funding.
The Secretary should direct not only ACL but other HHS agencies to develop, disseminate, and implement evidence-based caregiver intervention programs—many of which have been developed with funding from the National Institutes of Health (NIH) 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. Interventions that have been tested through well-designed trials have involved (separately or in combination) a broad range of therapeutic techniques, been applied in a variety of settings, and been evaluated for a broad set of impacts for the caregiver and the care recipient. As noted earlier, key findings from this research are 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; and
- interventions to support caregivers have been shown to decrease resource use including reduced care recipient readmissions, shorter lengths of hospital stay, and delayed institutionalization.
Research also provides important lessons regarding what distinguishes effective from ineffective interventions. 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. The NFCSP is one example of a federal program that incorporates elements of evidence-based caregiver interventions into broad-based service programs for caregivers. With increased funding, the NFCSP could serve as an important vehicle for disseminating effective caregiver interventions.
Efficacy trials aimed at developing and refining intervention strategies to support caregivers should continue to be supported, particularly for diverse populations, but an even greater emphasis should be placed on efforts to scale up effective intervention strategies so that they become widely available. ACL and other HHS agencies such as NIH, the Agency for Healthcare Research and Quality, and the Centers for Disease Control and Prevention are uniquely positioned to promote this agenda.
RECOMMENDATION 1-e: Explore, evaluate, and, as warranted, adopt federal policies that provide economic support for working caregivers.
Caregiving and employment are increasingly intertwined. Already about half of the nation’s family caregivers for older adults are employed. But the proportion is projected to increase substantially, as older women
increasingly participate in the work force and retire at older ages. These working caregivers—especially those who care for people with dementia or with substantial personal care needs—are at risk of significant economic costs: immediately reduced income as they work fewer hours, take time off, or leave jobs altogether; increased expenses to support their relatives; and lower lifetime earnings, savings, and retirement benefits as a result of less time spent in the workforce. Low-wage and part-time workers are most vulnerable to economic harm of family caregiving.
At the same time, job discrimination may affect family caregivers’ job security when caregivers are rejected for hire, denied a promotion, or otherwise penalized based on assumptions about the impact of caregiving, without regard to their actual work performance.
Passage of the Family and Medical Leave Act (FMLA) in 1993 was an important step toward providing working caregivers with help in balancing job and family responsibilities. However, FMLA limits participation to only certain family relationships, excluding daughters- and sons-in-law, stepchildren, grandchildren, siblings, nieces and nephews, and other relatives who care for older adults; and it does not apply to employers with fewer than 50 employees. Perhaps even more important, eligible family caregivers may be unable to afford the unpaid leave that FMLA protects, and many American workers—especially low-wage workers—lack access to paid time off of any kind.
In 2015, President Obama took two new steps to expand access to paid leave, including care of an ill family member. In January, the White House issued a Presidential Memorandum directing federal agencies to advance up to 6 weeks of paid sick leave for federal employees in connection with the birth or adoption of a child, or to care for ill family members, including spouses and parents. 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) to medical appointments. States finance paid family leave through an insurance model that relies on minimal payroll taxes paid by employees. Public financing mechanisms have the potential to extend protections to contract workers who do not qualify as employees. Although some employers report additional costs, initial evidence suggests that many report that they have adapted to family leave requirements. In recent years, a growing number of city and county governments have similarly required that employers provide access to paid sick leave to their
employees. The U.S. Department of Labor has also recently initiated a program that promotes paid leave policies.
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 long-term economic security are not limited to leave policies. A range of worthy proposals merit serious consideration including, for example, 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 support workers with caregiving responsibilities. Exploring the feasibility of these proposals will require economic impact assessments that include not only the caregiver but also employers and federal and state agencies such as the Social Security Administration. Evaluating feasibility will also require that policy analysis takes into account unintended consequences, including the impact on a caregiver’s labor force participation after they receive economic support from a given program.
RECOMMENDATION 1-f: Expand the data collection infrastructures within the U.S. Departments of Health and Human Services, Labor, and Veterans Affairs to facilitate monitoring, tracking, and reporting on the experience of family caregivers.
The challenges facing family caregivers result more from policy default than from policy design. Indeed, the nation lacks the data infrastructure and knowledge base that policy makers need to design and implement responsible policies and to monitor progress in their implementation and impact over time. Effective protection of the nation’s family caregivers and their families requires a data collection system that consistently identifies care recipients and their caregivers and regularly monitors how many there are, who they are, what they do, how much they do, and the impact of their experience on health, economic, and social outcomes for both family caregivers and care recipients.
A number of existing annual population surveys have the potential to contribute to this system. If consistently funded and properly used, potential resources go beyond the combination of the National Survey of Caregivers and the National Health and Aging Trends Study the committee relied on in this report. These efforts should be continued and expanded as they provide a fine-grained assessment of the nature and impact of caregiving.
Other surveys such as the Behavioral Risk Factor Surveillance System
and the American Community Survey could be useful in monitoring the prevalence of caregivers at the local, state, and national levels. Having reliable estimates of the number and types of family caregivers in communities and their racial/ethnic makeup would be valuable in planning for needed supportive programs and approaches. To make appropriate use of survey findings, survey instruments should, when appropriate, use common language and definitions, and analysis plans should carefully monitor changes in caregiver prevalence over time.
Chapter 2 noted the difficulties in interpreting the wide range of estimates of the caregiver population coming from various national surveys. Future population surveys should use standardized definitions to allow researchers to develop comparable estimates. There is no “one-size-fits-all” definition of a family caregiver, however. Definitions should vary depending on the context. For example, it may be appropriate to define family caregivers differently for the purposes of program eligibility, in developing payment incentives (including quality measures), or for assessing the effectiveness of an intervention in a specific population.
To provide effective policy support, surveys should address family caregivers and older adults not just at a point in time, but over time, and should have sufficient reach to assess diverse groups of family caregivers—who vary in numerous ways likely to affect caregiving challenges. Key variations likely include age, race and ethnicity, sexual orientation, rural or urban location, employment status, geographic proximity to care recipients, and care recipient condition.
Alongside population data, generating knowledge to guide and evaluate policy requires data collected in the routine delivery of care—data that can only come from adoption of the caregiver identification and assessment practices recommended above. 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), Centers for Disease Control and Prevention, National Center for Health Statistics, and National Institute on Aging. Planning for this effort could be informed by a series of consensus conferences, which could be spearheaded by the Secretary of the U.S. Department of Health and Human Services.
RECOMMENDATION 1-g: Launch a multi-agency research program sufficiently robust to evaluate caregiver interventions in real-world health care and community settings, across diverse conditions and populations, and with respect to a broad array of outcomes.
Despite the valuable lessons learned from research on caregiver interventions, there are significant barriers to moving existing evidence-based interventions from the test phase into implementation in actual practice. Challenges begin with limitations to existing evidence—due in particular to the predominance of interventions focused on specific diagnoses (especially Alzheimer’s disease), a particular disease stage, a homogeneous population, and a limited set of outcomes. 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. Research should be guided by consensus among key stakeholders regarding the priority interventions to test. This research ideally would
- include a diverse population of caregivers, varied in socioeconomic status, culture, race, health literacy, gender, and sexual orientation, as well as caregivers with multiple caregiving responsibilities (e.g., two parents or parent and child);
- encompass the needs of caregivers across the trajectory of care;
- be conducted in diverse geographic contexts;
- include metrics related to psychological, physical, and social wellbeing as well as health care use and cost implications for caregivers and care recipients, as appropriate; and
- explore the efficacy, feasibility, acceptability, usability, and cost-effectiveness of technology-based intervention strategies—including assessment of mechanisms to facilitate caregiver access to broadband or other technical requirements and to teach skills for using technology-based interventions.
Concerted federal leadership will be essential to effectively promote the health, economic, and social well-being of the nation’s caregivers and their families. However, the committee’s call for the development of a National Family Caregiving Strategy should not in any way impede currently planned or ongoing federal initiatives, or—equally important—inhibit the progress that state and local policy makers and others are making consistent with the reforms proposed in this report. On the contrary, alongside the recommendation for a national strategy, the committee recommends that:
RECOMMENDATION 2: State governments that have yet to address the health, economic, and social challenges of caregiving for older adults should learn from the experience of states with caregiver supports, and implement similar programs.
Some states are well ahead of the federal government in recognizing, valuing, and supporting family caregivers. Twenty-nine states have enacted the Caregiver Advise, Record, Enable (CARE) Act, which requires hospitals to ask individuals—when they are admitted—whether they wish to designate a family caregiver, and, if so, to record the name of the caregiver in the medical record; to notify the family caregiver if the person is to be discharged to another facility or back home; and to provide effective explanation of and instruction on the medical/nursing tasks (e.g., medication management, injections, wound care) that the family caregiver will need to perform at home.
With regard to unpaid leave, 14 states2 have extended eligibility for the protections of FMLA to family members not covered by the federal status, including domestic partners, grandchildren, daughters- and sons-in-law, or siblings. Six states (including Washington, DC) extended eligibility to workers in businesses with fewer than 50 employees and two states allow broader use of FMLA leave by allowing workers to take family members to medical appointments. Several states, as noted earlier, have enacted paid family or sick leave laws that enable workers to take time off to care for an older family member.
Some states have acted on other fronts, including caregiver assessment in Medicaid LTSS and Medicaid payments to family caregivers providing home- and community-based care.
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.
can independently advance caregiver and care recipient well-being by learning these lessons and adopting best practices.
RECOMMENDATION 3: The Secretaries of the U.S. Departments of Health and Human Services, Labor, and Veterans Affairs should work with leaders in health care and long-term services and supports delivery, technology, and philanthropy to establish a public–private, multi-stakeholder innovation fund for research and innovation to accelerate the pace of change in addressing the needs of caregiving families.
Addressing caregiver issues will require not only changes in the public sector, but also the support and guidance of the private sector to achieve maximum impact. Employers of all types have a vested interest in supporting family caregivers. Insurance, health care, and technology companies, among others, can bring to bear both financial resources and expertise to address current and emerging challenges for caregivers. Multiple national and local private foundations, as well as nonprofit organizations, have already invested in moving forward the caregiver agenda. The public sector cannot achieve all necessary progress on its own; a public-private innovation fund could leverage private funding to complement public resources and fill gaps in public funding.
The fund could sponsor the development of market-driven approaches for lessening the strain of caregiving on families—targeting innovative services and products that are scalable and sustainable. Potential products include assistive technologies, remote monitoring and sensing systems, telehealth applications, and other tools to assist family caregivers and to enable older adults to continue living in their home and communities. These systems could also be linked to health care and social service providers to aid in care coordination efforts. The fund could also invest in marketing evidence-based services and products, research to improve the evidence base, and widespread adoption.
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). The Investing in Innovation Fund is administered by the U.S. Department of Education (DOE) and collaborates with school districts and nonprofits to distribute $650 million in
grants to develop, validate, and scale-up innovations in education (DOE, 2016). The Social Innovation Fund is administered by the Corporation for National and Community Service and has distributed $50 million in grants to nonprofits looking to evaluate evidence-based programs that address economic opportunity, youth development and school support, and promoting healthy lifestyles. The Social Innovation Fund has also examined issues relevant to older adults as one of the grants looked at the Improving Mood–Promoting Access to Collaborative Treatment (IMPACT) model for treating depression in older adults.
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). The Brigham Care Redesign Incubator and Startup Program, an innovation initiative sponsored by Brigham and Women’s Health Care is exploring ways to improve care during transition from intensive hospital care to long-term rehabilitation (Laskowski and Dudley, 2015). The program has funded projects aimed at improving the transition to long-term acute care rehabilitation, increasing vaginal births after Cesarean section, and addressing emergency department “super users.”
The future of caregiving for older Americans will be shaped not only by the growing number of older people needing care but also by the increasing ethnic and racial diversity of older people and their families. In less than 15 years, nearly 3 in 10 older Americans will identify as a member of a minority group. Sometime after 2040, no racial or ethnic group will constitute a majority of people aged 65 and older.
Differences in culture, along with differences in income, education, neighborhood environments, lifetime access to health care, and occupational hazards will have a significant impact on the need for care, the availability and willingness of family caregivers to provide it, and the most effective and appropriate ways to provide caregiver support. Developing programs and services that are accessible, affordable, and tailored to the needs of diverse communities of caregivers presents significant challenges.
In its final recommendation, the committee therefore calls on all parties to:
RECOMMENDATION 4: In all the above actions, explicitly and consistently address families’ diversity in assessing caregiver needs and in developing, testing, and implementing caregiver supports.
Our older adult and caregiver population is becoming increasingly diverse, a trend that will continue for decades to come. Specific steps are
needed to ensure that our national strategy is developed and implemented so that it addresses the needs and values of diverse family caregivers. This will require specific actions, including oversight to ensure progress, in providing support that is both accessible and effective for all family caregivers. Federal and state governments and philanthropic organizations all have a critical role in achieving this goal. Specific steps that can be taken include the following:
- Related to each of the recommendations above, the strategy will include specific goals for advancing support for diverse family caregivers and the biannual report will specifically address progress of the strategy in meeting these goals.
- Cultural competence is included as a core aspect of provider competencies in working with family caregivers.
- Critical gaps in our knowledge about the effectiveness of interventions for diverse populations are addressed through both research and implementation efforts.
- 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.
CHCF (California Health Care Foundation). 2016. Health innovation fund. http://www.chcf.org/innovation-fund/investment-criteria (accessed June 16, 2016).
DOE (U.S. Department of Education). 2016. Investing in innovation fund (i3). http://www2.ed.gov/programs/innovation/index.html (accessed June 16, 2016).
Haskins, R., and J. Baron. 2011. The Obama Administration’s evidence-based social policy initiatives: An overview. http://www.brookings.edu/~/media/research/files/articles/2011/4/obama-social-policy-haskins/04_obama_social_policy_haskins.pdf (accessed June 16, 2016).
Laskowski, K., and J. Dudley. 2015. How Brigham & Women’s funds health care innovation. Harvard Business Review. https://hbr.org/2015/10/how-brigham-s-funds-health-care-innovation (accessed June 16, 2016).
Office of Social Innovation and Civic Participation. 2016a. Innovation funds. https://www.whitehouse.gov/administration/eop/sicp/initiatives/innovation-funds (accessed June 16, 2016).
Office of Social Innovation and Civic Participation. 2016b. Social innovation fund.https://www.whitehouse.gov/administration/eop/sicp/initiatives/social-innovation-fund (accessed June 16, 2016).
Shah, S. M., and M. Jolin. 2012. Social sector innovation funds: Lessons learned and recommendations. https://www.americanprogress.org/issues/education/report/2012/11/20/45110/ social-sector-innovation-funds (accessed June 16, 2016).
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