Authored by Lynn Friss Feinberg, MSW, Senior Strategic Policy Advisor, AARP Public Policy Institute. This Issue Brief is part of a collaborative series between Grantmakers In Aging and Grantmakers in Health, supported by Archstone Foundation.
The term long-term services and supports (or long-term care) often conjures a picture of an older person in a nursing home. But most long-term services and supports (LTSS) are not institution-based. The vast majority of older adults with chronic, disabling conditions lives at home and in the community. Nearly all (95%) community-dwelling older adults receiving help with daily living rely on families or close friends for most or all of their support; only about one-third receive any paid help.
Today, caregiving for a parent, grandparent, spouse, partner, or other adult relative or friend is commonplace as our population ages. It is the “new normal” of family life for millions of people in the United States.
Family caregiving issues can impact individuals caring for family members of any age, including those caring for children or adults with disabilities. However, this overview focuses on family caregivers with eldercare responsibilities because most family caregivers provide care and support for older people.
Family caregivers wear many hats. They help their loved ones navigate the bewildering complexity and fragmentation of the LTSS and health care systems. They often provide daily care, such as help with bathing and dressing, providing transportation to medical appointments, and handling bills and health insurance claims. Nearly half (46%) of family caregivers also perform complex medical/nursing tasks for the person receiving care, such as wound care; managing multiple, complex medications (including administering intravenous fluids and injections); and helping with assistive devices for mobility. They often do these tasks on top of other work and family responsibilities. Most family members who assume a caregiving role for an older relative or friend have no idea what to do, how to do it, or where to get help.
Medical advances, shorter hospital stays, limited discharge planning, and more home care technology have transferred the cost and responsibility for the care of frail older adults that was once confined to hospitals onto families. At the state and local levels, increased demands and budget cuts for paid home and community-based services (HCBS) to supplement family care are placing more responsibilities and economic burdens on families without the necessary support they need to continue in their caregiving role. These are the realities of the “new normal” of family caregiving in the U.S.
Profile of Family Caregivers
The term “family caregiver” is broadly defined and refers to any relative, partner, friend, or neighbor who has a significant personal relationship with, and who provides a broad range of assistance for, an older adult or an adult with chronic, disabling, or serious health condition.
Many individuals who provide assistance and support to a loved one with LTSS needs do not identify themselves as “caregivers.” Rather, they describe what they do in terms of their relationship to the other person: as a husband, wife, partner, grandson, niece, or close friend, for example.
Family caregivers are the bedrock of LTSS in our country. In 2013, about 40 million family caregivers in the U.S. provided an estimated 37 billion hours of care to an adult with limitations in daily activities. They provided unpaid care valued at $470 billion that year, up from an estimated $450 billion in 2009. This estimated $470 billion is more than total Medicaid spending in 2013, more than four times Medicaid LTSS spending in 2013, and as much as 2013-2014 sales of the four largest U.S. tech companies combined (Apple, IBM, Hewlett Packard, and Microsoft), according to AARP’s Public Policy Institute.
Caregiving in the U.S. 2015 finds that the “average” U.S. caregiver is a 49-year-old woman who works outside the home and provides unpaid care to her mother for about four years. While most family caregivers are women (60%), increasingly men are family caregivers, too (40%). More than eight in ten (86%) family caregivers are caring for a relative or friend age 50 or older. Nearly one quarter (24%) of America’s family caregivers today are Millennials between the ages of 18 to 34, and are equally likely to be male or female. Seven percent of caregivers are 75 years of age or older.
Six in 10 caregivers report being employed at some point in the past year while caregiving. Among them, 56% worked full-time, and on average, they worked 34.7 hours a week. Combining work in the labor force with unpaid work as a family caregiver can result in a fragile balancing act.
Costs and Consequences of Family Caregiving
Although many family members take on care willingly – and many find it a source of deep satisfaction and meaning – a 30-year body of research shows that family members who provide care and support to older persons or adults with chronic or disabling conditions are themselves at risk. There are negative effects on family caregivers’ own physical and emotional health, financial situation, retirement security, social networks, careers, and ability to keep their loved one at home. The impact is especially great when the care is for a family member or close friend with complex health conditions and both functional and cognitive impairments, such as a person with dementia.
Research findings from the American Psychological Association’s Stress in America survey show that those who serve as family caregivers to aging relatives report higher levels of stress and poorer health than the population at large. More than half (55%) of caregivers surveyed said that they felt overwhelmed by the amount of care their family member needed. The challenge ahead is to better recognize and ease the burden on family caregivers if we, as a nation, expect families to continue in their caregiving roles without burning out.
Achieving quality of life and quality of care for frail older adults with chronic or disabling conditions depends on embracing a person- and family-centered perspective. This means recognizing, respecting, and better understanding family care needs, problems, resources, and strengths, and then taking action to help address their needs.
The Need for a Range of Caregiver Support Services
Because family caregivers have numerous roles and carry out multiple tasks, often, over many years, they need a range of support services to stay healthy, improve their caregiving skills, and remain in their caregiving role. Caregiver support services can reduce the burden, strain, and depression caregivers experience; allow them to remain in the workforce; and can even delay the institutionalization of a loved one. Programs that provide a combination of education and skills training, coping techniques, and counseling show positive results, but more research is needed, especially with services targeted to multicultural and diverse family caregivers, and families caring for loved ones with multiple chronic conditions.
Family caregiver supportive services include information about managing chronic conditions and available services, assistance in gaining access to services and supports, education and training on direct care skills, and respite care (to provide temporary relief from caregiving tasks). Support services may also include counseling, short-term therapy groups to increase coping skills, family meetings, in-person and online support groups, and assistive technologies.
Some caregiver support services are available through local government agencies, such as Area Agencies on Aging (AAAs), service organizations, or faith-based organizations. Some employers and businesses may offer benefits or caregiver support programs that assist workers who are juggling eldercare with paid work.
There is limited public financing to support family caregiving. The National Family Caregiver Support Program (NFCSP) was authorized under Title III-E of the Older Americans Act in 2000. The NFCSP provides grants to State Agencies on Aging that award funds to AAAs for caregiver support. Services provided include information and assistance about available services, individual counseling, support groups, education and training, respite services to provide families temporary relief from caregiving responsibilities, and supplemental services (such as home adaptations) to complement care provided by family and other unpaid caregivers. But the NFCSP provides very modest funding: just $152 million nationwide in fiscal year 2015. A national evaluation of the NFCSP will be released in 2016.
The Lifespan Respite Program was established in 2006 and aims to implement statewide systems of coordinated, community-based respite for family members caring for individuals with special needs of all ages. To date, 33 states and the District of Columbia have received lifespan respite grants from the Administration for Community Living. In fiscal year 2015, this program was funded at only $2.4 million.
State general revenues pay for caregiver services in relatively few states. Some states have covered caregiver training and respite care services, important benefits for family caregivers, under their Medicaid HCBS waiver programs – the largest source of public funding for HCBS.
The Future Care Gap
The aging of the population, changing patterns of family life, and other sociodemographic trends may affect nearly every American family in the future. However, the coming decades look unlike the present: by 2050, the supply of family caregivers is unlikely to keep pace with future demand.
People ages 45 to 64 are the likeliest caregivers for the nation’s frail older people. As baby boomers age over the next several decades, the ratio of likely family caregivers to older people who need care is projected to shrink dramatically, according to the AARP Public Policy Institute. Today there are more than seven potential caregivers, ages 45 to 64, for every person aged 80 and older. In just 10 years (2026), as the baby boomers age into their 80s, there will be four. Between 2030 and 2050, the ratio drops to just under three.
The projected decline in the caregiver support ratio is seen in all 50 states. Across the nation, a larger number of older people will have to rely on fewer family caregivers. In the coming decades, we will need better support for family caregivers, a strong and stable paid health care workforce, and innovative solutions in both the public and private sectors if we hope to sustain older people in their homes and communities—the setting preferred by nearly all.
The Important Role of Grantmakers
Support for research and programs related to family caregiving has been prevalent among grantmakers for many years. One recent project, in particular, attracted the support of a number of foundations. In 2014, the Institute of Medicine initiated a project to develop recommendations for public and private sector policies to support the capacity of family caregivers to (1) perform critical caregiving tasks, (2) minimize the barriers that family caregivers encounter in trying to meet the needs of older adults, and (3) improve the health care and long-term services and supports provided to care recipients.
The report from this project that will be published in mid-2016 will analyze the prevalence of family caregiving and the demographic, societal, and technological trends that influence it. It will also examine caregivers’ roles and responsibilities, both current and expected in the future, and the impact of the caregiver role on individual health, employment, and well-being. Caregivers’ unmet needs and the gap between the projected demand for caregivers and the population available to serve as caregivers will be assessed, and differences associated with race/ethnicity, culture, rural residence, and geography will be examined.
The report will also review the evidence of the effectiveness of potential supports for family caregivers and care recipients across a range of settings including, 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.
The funders supporting this project are listed below, along with their other recent grantmaking activities or resources related to family caregiving.
Alliance for Aging Research
Publisher of “Living with Alzheimer’s: A Personal Health Organizer” which helps patients and caregivers keep track of all of the information that comes with living with the disease.
Extensive education and resource center for persons with Alzheimer’s disease and their caregivers.
The Archstone Foundation
Also provided recent support for Family Caregiver Alliance’s updated Caregiver Assessment tool, which assesses the needs of family caregivers in six areas (positive and negative effects of caregiving, care tasks and skills, caregiver health, financial impact of caregiving, caregiver social support, and caregiver values and preferences); and awarded a grant to Stanford University to evaluate an online educational program on “Building Better Caregivers.”
California HealthCare Foundation
Numerous resources available, including those related to advance care planning.
Along with The SCAN Foundation, Commonwealth supported the AARP Public Policy Institute in producing the first of its kind State Long-Term Services and Supports (LTSS) Scorecard. The Scorecard examines state performance across five key dimensions of LTSS system performance: 1) affordability and access, 2) choice of setting and provider, 3) quality of life and quality of care, 4) support for family caregivers, and 5) effective transitions. The report is designed to help states improve the performance of their LTSS systems, including better support for family caregivers.
Fan Fox and Leslie R. Samuels Foundation
Extensive support for programs to improve the care of persons with dementia.
Health Foundation of Western and Central New York
Funds programs that assist vulnerable older adults and help develop the health care workforce that supports older adults.
The John A. Hartford Foundation
Supported “Professional Partners Supporting Family Caregivers,” which sought a better understanding of what family caregivers are expected to do and how health care and social service professionals can better support them in their work. This project, also supported in part by the Jacob and Valeria Langeloth Foundation, included such activities as identifying the knowledge and skills that social workers and nurses need to support caregivers of older adults, developing Standards for Social Work Practice with Family Caregivers of Older Adults, and an AARP study conducted with the United Hospital Fund, Home Alone: Family Caregivers Providing Complex Chronic Care that challenged the common perception of the tasks that family caregivers perform.
May and Stanley Smith Charitable Trust
The Trust’s funding program focusing on elders also includes caregivers, specifically family members, volunteers, and paid professionals.
Retirement Research Foundation
Examples of recent funding include support to the Benjamin Rose Institute on Aging for research on “Decision-Making and Services Use in Caregiving Families Over Time,” and support to Marquette University to conduct research to prepare family caregivers to recognize and act on symptoms of delirium in older adult family members.
The Rosalinde and Arthur Gilbert Foundation
The Foundation supports effective and creative programs, practices, and policies related to healing from illness, accident, physical, social or emotional trauma, and to extend the availability of programs that promote healing to underserved populations, including older adults.
Santa Barbara Foundation
The foundation is increasing awareness and advancing support for caregivers in the community by providing support and services to family caregivers, including helping people identify with their roles in caregiving and developing more integrated and inclusive health and social systems.
Tufts Health Plan Foundation
The foundation funds extensively in its Health and Wellness program area, primarily for initiatives that promote chronic disease self-management and prevention, exercise and nutrition, and fall prevention. The foundation also awards more than 25% of its grants in the area of Purposeful Engagement, which includes community involvement, volunteerism, and intergenerational programs as well as caregiver support programs.
Funders could provide leadership in the following areas:
Accelerate Recognition of, and Support for, Family Caregivers. Now is the time to raise awareness among both decision makers and the public about the growing intensity and complexity of family care as the population ages. Support is needed for a national campaign to implement the upcoming recommendations of the Institute of Medicine’s Study on Family Caregiving for Older Adults.
Develop Better Communication, Coordination, and Collaboration with Health Care and Social Service Professionals. Support is needed for more education and training of health and social service professionals to develop better communication, coordination, and collaboration with family caregivers as partners in care, especially during care transitions from hospital to home. More attention must be given to encouraging nurses, social workers, and other health professionals to fundamentally reassess and restructure the way they interact with family caregivers in daily practice, including ways to provide training to family caregivers on how to perform medical/nursing tasks in the home after a loved one is discharged from the hospital. Medical/nursing tasks can include doing wound care, giving injections and tube feedings, or operating medical equipment. In 2015 alone, 18 states passed legislation—known as The Caregiver Advise, Record, Enable (CARE) Act—to ensure that family caregivers are involved in medical decisions affecting loved ones and to help family caregivers get needed training. Funders can help to support videos and other instructional aids to best “teach” family caregivers how to do these complex tasks at home.
Embrace Diversity and Cultural Competency. As the U.S. population becomes more racially, ethnically, and culturally diverse, research is needed to better understand the diversity of caregiving experiences, and to develop evidence-based interventions that support the needs of multicultural and lesbian, gay, bisexual, and transgender (LGBT) caregivers. New models of care that use principles of cultural competency and inclusion suggest acknowledging race and ethnicity, sexual orientation, and regional variations in culture across the country. Research in this area will help prepare our nation to care for an increasingly diverse aging population and support their families of choice.
Support Family Caregivers with Workplace Policies and Programs. The number of workers with eldercare responsibilities is on the rise. Balancing work and eldercare is a growing issue for both workers and employers in the modern workplace. Millions of American workers face financial difficulties or risk losing their jobs if they must take time off from work to address eldercare needs. More research is needed to understand the impact of caregiving on work, the economic benefits of paid family and medical leave, and to develop “family friendly” and flexible workplace policies.
- Promote New Models of Care. As the consumer movement toward “person” (or “patient” in medical terms) and family-centered care has developed, the need to address the individual and family experience of care has gained attention in recent years. Research and demonstration projects are needed to promote new models of care that: 1) view the person and the family as the “unit of care” and are person- and family-centered; 2) integrate primary health care and LTSS for older people with multiple chronic conditions and functional limitations, and support their family caregivers; and 3) incorporate explicit caregiver supports into care plans to improve the effectiveness and outcomes of chronic care management. Research is also needed to address the gap in measures of a caregiver’s experience of care.
Families and friends are the backbone of America’s care system. But today, family caregiving is more complex, costly, stressful, and demanding than ever before. Support from grantmakers to better recognize and address the needs of family caregivers would make a huge difference — since at some point in our lives, each of us will likely take care of somebody we are close to who needs help with daily living.
Basic References, Reports, and Issue Briefs
"Family Caregiving," Generations, Volume 39, No. 4. This issue of the American Society on Aging’s (ASA) quarterly journal (partially supported by The Archstone Foundation) features articles on advances and emerging issues in policy, practice, and research to support family caregivers of older adults.
Families Caring for an Aging America. A report from the National Academies of Sciences, Engineering, and Medicine provides an overview of the prevalence and nature of family caregiving of older adults as well as its personal impact on caregivers’ health, economic security, and overall well-being.
Caregiving in the U.S. 2015. Research survey conducted by the National Alliance for Caregiving and the AARP Public Policy Institute, presenting the most recent portrait of family caregivers.
Valuing the Invaluable: 2015 Update. Published by the AARP Public Policy Institute, this report updates national and individual state estimates of the economic value of family care, describes key challenges facing families in their caregiving role, and lists key policy developments for family caregivers.
Informal Caregiving for Older Americans: An Analysis of the 2011 National Study on Caregiving. This 2014 report examines the role and experiences of family caregivers for the population age 65 and older, using a new resource, the National Survey of Caregiving (NSOC). The NSOC was a supplement to the 2011 National Health and Aging Trends Study (NHATS).
Raising Expectations: A State Scorecard on Long-Term Services and Supports (LTSS) for Older Adults, People with Physical Disabilities, and Family Caregivers. This 2014 second edition by the AARP Public Policy Institute, funded by The Commonwealth Fund and The SCAN Foundation, measures LTSS system performance across five key dimensions, including support for family caregivers.
Catalyzing Technology to Support Family Caregiving. A 2014 report by the National Alliance for Caregiving identifies key steps to better support family caregiving through mobile, online, and in-home technologies.
Commission on Long-Term Care, Report to the Congress. A 2013 report with bipartisan recommendations to help build a better system to support individuals with LTSS needs and their family caregivers.
Listening to Family Caregivers: The Need to Include Family Caregiver Assessment in Medicaid Home- and Community-Based Service Waiver Programs. Published in December 2013 by the AARP Public Policy Institute, this report presents findings from a 50-state survey examining how well the needs of family caregivers are assessed when states evaluate the needs of older people and adults with disabilities who qualify for HCBS programs under Medicaid. Funded in part by The John A. Hartford Foundation.
The Aging of the Baby Boom and the Growing Care Gap: A Look at Future Declines in the Availability of Family Caregivers. Published in August 2013 by the AARP Public Policy Institute, this paper estimates the availability of family caregivers to 2050.
Keeping Up with the Times: Supporting Family Caregivers with Workplace Leave Policies. A June 2013 paper by the AARP Public Policy Institute highlighting three public policy solutions to extend protections for working caregivers: unpaid family and medical leave, paid family and medical leave insurance, and earned sick time.
Family Caregivers are Wired for Health. 2013 research survey on the use of health information and technology conducted by Princeton Survey Research Associates for the Pew Internet & American Life Project. Funded by the California HealthCare Foundation.
Home Alone: Family Caregivers Providing Complex Chronic Care. An October 2012 report from the AARP Public Policy Institute and the United Hospital Fund, based on the first nationally representative population-based online survey of family caregivers to explore the extent of medical and nursing tasks that family caregivers provide. Funded by The John A. Hartford Foundation.
Moving Toward Person- and Family-Centered Care. A March 2012 paper by the AARP Public Policy Institute that defines what is meant by person- and family-centered care, and describes the key elements of this concept in practice settings.
A Call to Action: What Experts Say Needs to Be Done to Meet the Challenges of Family Caregiving. Published in February 2012 by the AARP Public Institute, this paper presents insights from a forum of prominent authors of caregiving books.
The MetLife Study of Caregiving Costs to Working Caregivers. A June 2011 report that looks at adult children who work and care for their aging parents, and the impact of caregiving on their earnings, lost wages, and their future retirement incomes.
LGBT Older Adults and Caregiving: Unique Needs. An April 2011 video shining light on the unique needs and challenges facing LGBT caregivers from SAGECAP (SAGE Caring and Preparing), a program of Services & Advocacy for GLBT Elders (SAGE).
The MetLife Study of Working Caregivers and Employer Health Care Costs. A February 2010 report focusing on how family caregiving, employer health costs, and employer-sponsored wellness benefits intersect.
Selected Caregiver Statistics, 2012, Family Caregiver Alliance.
Understanding the Impact of Family Caregiving on Work, October 2012, AARP Public Policy Institute.
Protecting Family Caregivers from Employment Discrimination, August 2012, AARP Public Policy Institute with support from The SCAN Foundation and The Commonwealth Fund.
Assessing Family Caregiver Needs: Policy and Practice Considerations, June 2012, AARP Public Policy Institute with support from The SCAN Foundation and The Commonwealth Fund.
Resource Centers on Family Caregiving
AARP Caregiving Resource Center is a website developed to provide family caregivers with information, tools, and resources to help them on their caregiving journey. The site also provides access to caregiving experts in various issue areas. These experts provide information through blogs, webinars, and one-on-one interaction through social media channels. Family members and friends can also find a supportive online community that offers a safe space to connect with others experiencing similar rewards and challenges as they care for a loved one.
National Center on Caregiving, Family Caregiver Alliance (FCA) Established in 2001 as a program of FCA, the National Center on Caregiving unites research, public policy, and services, and serves as a central source of information on caregiving and long-term care issues for policy makers, service providers, media, funders, and family caregivers throughout the country. The site includes the Caregiving Policy Digest, and the Family Care Navigator, a first-of-its-kind, state-by-state, online guide to help families in all 50 states locate government, nonprofit, and private caregiver support programs.
Next Step in Care is a campaign of the United Hospital Fund. Its goals are to 1) change health care practice so that family caregivers are routinely included in transition planning and implementation; 2) strengthen health care professionals’ capabilities to work effectively with family caregivers during and after transitions of care; and 3) improve family caregivers’ knowledge and skills in navigating the health care system so that they can be more effective partners. The website provides practical guides to help family caregivers and health care professionals work closely together to plan and implement safe and smooth care transitions into and out of hospitals, rehab units in nursing homes, and home care agency services.
ARCH National Respite Network and Resource Center assists and promotes the development of quality respite care programs in the United States; helps families locate respite and crisis care services in their communities; and serves as a strong voice for respite in all forums. ARCH also serves as the Technical Assistance Center for Lifespan Respite.
National Alliance for Caregiving: A coalition of national organizations focusing on issues of family caregiving; members include grassroots organizations, professional associations, service organizations, disease-specific organizations, government agencies, and corporations. The Alliance conducts research, does policy analysis, develops national programs, increases public awareness of family caregiving issues, works to strengthen state and local caregiving coalitions, and represents the U.S. caregiving community internationally. Established in 1996, The National Alliance for Caregiving is a non-profit coalition of national organizations focusing on issues of family caregiving. Alliance members include grassroots organizations, professional associations, service organizations, disease-specific organizations, a government agency, and corporations. The Alliance conducts research, does policy analysis, develops national programs, increases public awareness of family caregiving issues, works to strengthen state and local caregiving coalitions, and represents the U.S. caregiving community internationally.
Family Caregiver Alliance: Addressing the needs of families and friends providing long-term care at home, FCA is a public voice for family caregivers. Its programs—in information, education, services, and research—support and sustain the important work of families nationwide caring for loved ones with chronic or disabling conditions. See also FCA’s National Center on Caregiving (above).
Caregiver Action Network: CAN (formerly the National Family Caregivers Association) promotes resourcefulness and respect for family caregivers across the lifespan. It provides education, peer support, and resources for family caregivers across the U.S.
ReACT: A coalition of employers initiated in 2010 to address the response of the business community to employees juggling family caregiving and work demands. ReACT now represents more than 30 companies and non-profit organizations and over one million American employees.
Assisting Caregivers Today (ACT) Congressional Caucus: This bipartisan, bicameral caucus was created in March 2015 to bring greater attention to family caregiving and help people live independently, educate Congress on these issues, and engage them on a bipartisan basis to help develop policy solutions for family caregivers helping people of all ages.
Home Alone Alliance: A new initiative of the AARP Public Policy Institute aimed at catalyzing broad cultural change in how health care organizations and professionals support family caregivers.