AARP Eye Center
Background
In 2020, 38.9 million adults provided unpaid care to an adult family member or friend with health or functional needs. The average duration of care is 4.5 years, but 29 percent of caregivers have provided care for five or more years.
In 2013, the federal Commission on Long-Term Care issued bipartisan recommendations in several areas, including support for family caregivers. One recommendation was that Congress establish a national strategy to support family caregivers, similar in scope to the national strategy developed to support caregivers of individuals with 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 for 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 help with a wide range of activities of daily living (such as bathing and dressing) and instrumental activities of daily living (such as paying bills, doing housework and laundry, and managing medications). Family caregivers sometimes provide complex health care, including medical and nursing tasks such as tube feedings and dressing wounds. They also often coordinate health care and facilitate access to services and supports. According to a national survey in 2020, 61 percent of family caregivers are women. The median age of caregivers is 49. They provide, on average, nearly 24 hours of care each week, primarily to older people. About 54 percent of caregivers caring for a relative or friend are age 50 and older. Those most likely to provide care for five years or longer are caregivers age 50–64.
About one in four family caregivers of adults are part of the millennial generation. Those are individuals born between 1980 and 1996. Almost three in four of them are employed in jobs outside the home. And they assist with complex functional and medical/nursing tasks at rates similar to other family caregivers. That is, on average, more than 20 hours per week. Caregivers who provide 21 or more hours of care each week perform medical/nursing tasks more often than those who provide fewer hours. Despite this, they reported having difficulty with—and less training for—these tasks than did caregivers who provide 20 hours or fewer of care each week.
Given the vital role of unpaid caregivers in providing LTSS, their mental and physical health deserves greater attention and support. It is imperative that professional providers who work with older adults in health care or home- and community-based settings also assess family caregivers’ physical and mental health status and address the caregivers’ needs.
A slightly higher percentage of Black Americans and Hispanic/Latino people are caregivers compared to white, non-Hispanic Americans. Both Black American and Hispanic/Latino caregivers are more likely to be higher-hour caregivers than other populations.
Family caregivers can incur high out-of-pocket costs for care. More than three out of four caregivers had out-of-pocket costs related to caregiving, spending, on average, $7,000 per year in 2016. 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). On average, caregivers are spending nearly 20 percent of their income on caregiving activities.
Family and friends provide the majority of unpaid LTSS, yet federal and state programs and policies to support them are limited. Many are tax-related: credits, deductions for out-of-pocket expenses, and exemptions for dependents. However, few caregivers meet Internal Revenue Service support requirements to claim the person they are caring for as a dependent. 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.
Federal law allows people who itemize their income tax deductions to deduct certain LTSS expenses, including those for a dependent. In 2020, the Internal Revenue Service allowed all taxpayers to deduct total qualified unreimbursed medical and LTSS expenses for the year that exceeds 7.5 percent of their adjusted gross income.
Some employers provide flexible spending accounts in which employees can set aside up to $5,000 in pretax dollars. These funds can be used to care for dependent children under age 13 or those 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 if a portion of those services is for a dependent's care. Services include home care, adult day services, and housekeeping.
Some employers support caregivers by providing paid family leave (see also Job Protected Leave for information on family and medical leave, and the sections on Emerging Discriminatory Practices and Preserving and Strengthening Statutory Protections for information on discrimination against family caregivers). Some states give family members who care for an older relative limited support through Medicaid- or state-funded home-care programs that provide some LTSS. The National Family Caregiver Support Program 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
- limited supplemental services to complement the services that caregivers provide.
The Centers for Medicare & Medicaid Services formally recognized the importance of assessing the needs of family caregivers through its requirements for person-centered care planning. This requirement is in the 1915(i) Medicaid home- and community-based services state plan option, which allows states to target services to specific populations.
While state policies provide some support for family caregiving, Supplemental Security Income program rules provide a disincentive for caregiving because they reduce benefits for people who live with their families (see also Supplemental Security Income and Home- and Community-Based Services in this chapter for more information on benefits for people who live with their families).
In 2018, the Recognize, Assist, Include, Support, and Engage Family Caregivers Act (also known as the RAISE Act) was signed into law. This law required the Department of Health and Human Services to form a Family Caregiving Advisory Council with representatives from the public and private sectors to advise the department in developing a coordinated strategy to support family caregivers. The council has completed an Inventory of Federal Caregiving Support Programs and Initiatives as required by the act. It has developed 26 recommendations based on information gathered from family caregivers about their experiences. These recommendations will inform the development of a national strategy for family caregiving targeted to federal and state policy change.
SUPPORT FOR FAMILY CAREGIVERS: Policy
SUPPORT FOR FAMILY CAREGIVERS: Policy
Programs and services to assist caregivers
Federal and state governments should ensure that long-term services and supports (LTSS) programs cover services that support and supplement caregiving by relatives, friends, and neighbors. Services that enable them to continue caregiving include respite care and adult day services.
States should provide or refer caregivers to supportive services and increase efforts to educate and raise awareness among providers about the availability of supportive services for caregivers, including training on administering validated caregiver assessments and information on how to locate these services in their community.
These services can be offered through programs such as the National Family Caregiver Program and other similar programs under the Older Americans Act and the Veteran Affairs Family Caregiver Assistance Program. 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. They should be prepared to perform LTSS tasks such as bathing as well as medical and nursing responsibilities. These can include medication management and wound care.
Supplemental programs and support services should address the multicultural and language access concerns and needs of diverse caregiver populations.
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.
The Joint Commission (formerly 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. People living with family members should not have their benefits reduced (see also Supplemental Security Income).
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.
Payment for relatives for providing LTSS to eligible individuals
Policymakers should expand participant-directed service models (also called consumer-directed and self-directed models) that permit payment to relatives in publicly funded home- and community-based services (HCBS) programs. Such models would allow consumers and, if desired, their families to choose and direct the services and supports that best meet their needs. HCBS programs that offer participant-directed service options should allow participants to manage and direct their own services and supports, instead of having them managed by a home-care agency. Participant-directed programs allow participants to hire and fire a direct-care worker, just as consumers who pay privately can do. In some programs, participants also have control over wages, services delivered, and the schedule for delivering services. States should establish and coordinate policies within the LTSS delivery system to pay relatives and friends who care for people with LTSS needs.
Person- and family-centered service plans
The Centers for Medicare & Medicaid Services should require a needs assessment of all family caregivers who assist Medicaid HCBS program participants.
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 person- and family-centered service plans, 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 requirement to assess the needs of family caregivers under the 1915(i) HCBS state plan option to all assessment tools for Medicaid HCBS authorities. Such assessments will identify family caregivers at risk for burnout before they are unable to provide care or compromise their own physical and mental health and support them in their caregiving roles.
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 consumer is eligible for Medicaid or a publicly funded program, or is a private-pay individual;
- allow family caregivers who are assisting individuals with moderate incomes, and who would not otherwise qualify for publicly funded respite services, to buy into or otherwise access these services;
- establish policies to pay relatives and friends who care for people with LTSS needs as part of a service plan; 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.