Family caregivers support millions of older Americans with functional limitations. In 2013, about 40 million caregivers provided unpaid care to an adult family member or friend at some point during the year. The total economic value of these caregivers’ contributions was estimated at $470 billion annually, more than the total amount spent on formal (paid) long-term services and supports (LTSS) that year.
In 2013 the federal Commission on Long-Term Care issued bipartisan recommendations in several areas, including support for family caregivers. One of the commission’s recommendations was that Congress establish a national strategy to support family caregivers, similar in scope to the national strategy developed to address Alzheimer’s disease.
In 2016, the National Academies of Sciences, Engineering, and Medicine released a comprehensive report, Families Caring for an Aging America. The report concluded that the focus of the nation’s health care and LTSS reforms should evolve from person-centered care to person- and family-centered care. One of the report’s recommendations was to develop and execute a National Family Caregiver Strategy that, administratively or through new federal legislation, explicitly and systematically recognizes the essential role of family caregivers to older adults.
Caregivers vary by age, relationship to the care recipient, cultural influences, and income. They also vary by the kind of care they provide. Caregivers provide help with a wide range of activities ofADLs or Activities of Daily Living are the basic tasks of everyday life, such as eating, bathing, dressing, toileting, and transferring. IADLs or Instrumental Activities of Daily Living are activities related to independent living and include preparing meals, managing money, shopping for… daily living (such as bathing and dressing) or instrumental activities ofADLs or Activities of Daily Living are the basic tasks of everyday life, such as eating, bathing, dressing, toileting, and transferring. IADLs or Instrumental Activities of Daily Living are activities related to independent living and include preparing meals, managing money, shopping for… daily living (such as paying bills and providing transportation). Family caregivers are providing increasingly complex care for their loved ones, including medical and nursing tasks such as managing multiple medications and dressing wounds. They also often coordinate health care and help the recipient access services and supports. According to the Caregiving in the U.S. 2015 national survey (from the National Alliance for Caregiving and AARP), 60 percent of family caregivers are women. The average age of caregivers is 49, and they provide, on average, nearly 25 hours of care each week mostly to older people. Nearly eight in ten caregivers provide care to a relative or friend age 50 or older.
About one in four family caregivers of adults are part of the millennial generation (those born between 1980 and 1996). These millennial family caregivers help with complex functional and medical/nursing tasks at rates similar to other family caregivers; on average, they provide more than 20 hours of care per week. Almost three in four millennial family caregivers are employed at a paying job on top of their caregiving responsibilities.
Given how vital family caregivers are to the existing system of LTSS, their mental and physical health needs deserve greater attention and support. Those most likely to shoulder the heaviest burden of this care are caregivers who are themselves age 50 and older, according to a 2015 national survey. Higher-hour caregivers, or caregivers that provide 21 or more hours of care each week, perform medical/nursing tasks more often than lower-hour caregivers, although more reported having difficulty and less training for these tasks than caregivers that provide 20 hours of care each week or less. It is imperative that professional providers who work with older adults in health care or home- and community-based settings also assess and address family caregivers’ physical and mental health status.
The population of family caregivers is increasingly diverse as well. African American, Hispanic and Asian American populations have higher caregiving prevalence than white, non-Hispanic Americans, and both African American and Hispanic caregivers are more likely to be higher-hour caregivers than other populations.
Family caregivers also can incur high out-of-pocket costs of care. According to a 2016 AARP study, 78 percent of family caregivers experienced out-of-pocket costs as a result of caregiving. They spent, on average, $6,954 per year on out-of-pocket costs related to family caregiving. Long-distance caregivers (defined as family caregivers living more than one hour from the care recipient) incurred the highest out-of-pocket costs ($11,923). Those caring for an adult living with dementia reported nearly twice the out-of-pocket costs than those caring for someone who does not have dementia ($10,697 vs. $5,758).
Although family and friends provide the majority of LTSS in the US, federal and state programs to assist unpaid caregivers are limited. They most typically come in the form of tax credits and deductions. But few caregivers can meet IRS support requirements for claiming the person they are caring for as a dependent in order to claim those tax benefits. In specific circumstances, a caregiver can classify an older person receiving care as a dependent and claim a personal federal tax exemption. But because many older people receive Social Security benefits or pension income, relatively few can meet the income requirements to qualify as a dependent. Only employed caregivers who pay a third party to help a dependent person can claim the federal dependent-care tax credit.
Another possible source of assistance is the Health Insurance Portability and Accountability Act. It allows people who itemize their income tax deductions to deduct certain LTSS expenses, including those for a dependent. Taxpayers under the age of 65 can deduct combined medical and LTSS expenses that exceed 10 percent of their adjusted gross income. That threshold for taxpayers age 65 and older had been 7.5 percent; however, in 2017, it was increased to 10 percent for that age bracket as well. Under the Tax Cuts and Jobs Act of 2017, taxpayers age 65 and over could deduct combined medical and LTSS expenses that exceeded 7.5 percent of their income for 2017 and 2018. The threshold was increased to 10 percent in 2019.
Some employers also provide flexible spending accounts for employees, who can set aside up to $5,000 in pretax dollars that can go toward care for dependent children under age 13 or dependents age 13 and older that are incapable of caring for themselves. Contributions may also be used to pay for services that allow the employee to work outside the home—such as home care, adult day services, and housekeeping—if part of those services is for the dependent’s care.
Some states give family members who care for an older relative limited support through Medicaid- or state-funded home-care programs and tax policies. These supports include respite care, cash allowances, tax incentives, and paid family leave policies (see also Chapter 5, Employment - Time Off from Work for information on family and medical leave and Chapter 5, Employment - Emerging Discriminatory Practices and Preserving and Strengthening Statutory Protections for information on family caregiver discrimination). They may also cover workers’ compensation, unemployment insurance, and health care benefits
In 2000, the Older Americans Act established the National Family Caregiver Support Program, which funds states efforts to provide five basic services for family caregivers: information about available services; assistance in obtaining supportive services; individual counseling, support groups, and caregiver training; respite care, which allows caregivers temporary relief from their responsibilities; and supplemental services, on a limited basis, to complement the services that caregivers provide.
For the first time, the Centers for Medicare & Medicaid Services has formally recognized the importance of assessing the needs of family caregivers through the new requirements for person-centered care planning, but this applies only in a narrow Medicaid provision. However, the new rule relates only to assessing the needs of family caregivers under one of the Medicaid home- and community-based services (HCBS) authorities, the 1915(i) HCBS state plan option that allows states to expand HCBS and target services to specific populations.
These policies provide incentives for family caregiving, but the Supplemental Security Income program provides a disincentive because it reduces benefits for people who live with their families (see also Chapter 6, Low-Income Assistance Programs - Supplemental Security Income, and Expanding Home- and Community-Based Services for more information on benefits for people who live with their families.)
In 2018, the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act was signed into law. This new law requires the secretary of Health and Human Services to form a family caregiving advisory council, representing the public and private sectors, to advise on a coordinated strategy to recognize and support family caregivers.
SUPPORTING FAMILY CAREGIVERS: Policy
Providing programs and services to assist caregivers
Federal and state governments should ensure that long-term services and supports (LTSS) programs cover services—such as respite care and adult day services—that supplement caregiving by relatives, friends, and neighbors, and enable them to continue caregiving.
States should provide, or refer caregivers to, supportive services.
Federal and state governments should offer a range of culturally appropriate services geared to the needs of diverse family caregivers, such as:
- caregiver assessments to help improve targeting of supportive services, caregiver training programs, support groups, family meetings, and counseling (such as counseling for nutrition and mental health);
- home-modification programs and assistive technologies;
- respite care; and
- income support and transportation.
Education and training programs should ensure that family caregivers are well trained and prepared to perform not only difficult LTSS tasks such as bathing, but also to handle medical and nursing tasks, such as medication management and wound care.
Supplemental programs and support services should reflect the multicultural and language access concerns and needs of diverse populations of caregivers.
Federal and state governments should establish and coordinate information and referral systems to let caregivers know about the full range of available LTSS, including caregiver support services.
Federal and state governments should offer a range of culturally appropriate services geared to the needs of diverse family caregivers.
The Joint Commission (formerly known as the Joint Commission on Accreditation of Healthcare Organizations) should ensure that surveyors are trained to assess family caregiver training and support programs.
Amend the Supplemental Security Income Program
The federal government should amend Supplemental Security Income rules so that people living with family members do not have their benefits reduced (see also Chapter 6, Low-Income Assistance - Supplemental Security Income).
Providing tax incentives
Federal and state governments should provide tax credits, other financial assistance, or both to caregivers.
Federal and state governments should encourage employers to use existing tax incentives, such as flexible spending accounts for dependent care, to provide dependent- or family-care benefits.
Paying relatives for providing long-term services and supports to individuals eligible for public programs
Policymakers should expand participant-directed (sometimes referred to as consumer-directed) service models in publicly funded home- and community-based services (HCBS) programs that permit payment for family caregivers. Such models would allow consumers and their families to choose and direct the types of services and supports that best meet their needs.
States should establish and coordinate policies within the LTSS delivery system to pay relatives and friends who care for people with LTSS needs.
Ensuring person- and family-centered service plans
The Centers for Medicare & Medicaid Services should require assessment of the needs of all family caregivers who aid beneficiaries of Medicaid HCBS programs.
Publicly-funded HCBS programs and hospital discharge planners as well as Medicare Chronic Care Coordination and Care Transition programs should assess family caregivers’ needs, develop a person- and family-centered service plan, and offer evidence-based caregiver support services. These services can include education and skills training, counseling, and support groups.
The federal government should expand the new requirement to assess the needs of family caregivers under the 1915(i) HCBS state plan option to all assessment tools for Medicaid HCBS. Such assessments will identify at-risk family caregivers before they burn out or compromise their own physical and mental health.
Federal and state policymakers should:
- expand support for family caregiver services such as education and training, counseling, legal consultations, and respite care, which can delay or decrease the likelihood of needing to enter a nursing facility;
- preserve and expand funding for respite care services in a range of settings, such as personal care services in the home or adult day services, to ensure that more family caregivers can have a break from their caregiving duties;
- preserve and expand funding for respite care services regardless of whether the care recipient is eligible for Medicaid or a publicly funded program, or is a private-pay individual;
- allow family caregivers who are assisting care recipients with moderate incomes, and who would not otherwise qualify for publicly funded respite services, to buy into or otherwise access these services; and
- establish policies to pay relatives and friends who care for people with LTSS needs as part of a plan of care, and design programs and policies to protect consumers and avoid the erosion of family care networks—programs and policies should protect consumers, guard against fraud and abuse, and avoid disincentives for unpaid caregiving.