Support for Family Caregivers

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 People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. . One recommendation was that Congress establish a national strategy to support family caregivers People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. , 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 LTSSLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. 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 People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. Strategy that, administratively or through new federal legislation, explicitly and systematically recognizes the essential role of family caregivers People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. 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 provide help with a wide range of activities of daily livingSkills necessary for daily care of oneself such as bathing and showering, personal hygiene and grooming, toilet hygiene and self-feeding. (such as bathing and dressing) and instrumental activities of daily livingSkills necessary for daily care of oneself such as bathing and showering, personal hygiene and grooming, toilet hygiene and self-feeding. (such as paying bills, doing housework and laundry, and managing medications). Family caregivers People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. 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 People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. are women. The average age of caregivers is 49. They provide, on average, nearly 24 hours of care each week, mostly to older people. About 54 percent of caregivers who provide care to 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 People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. 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 provide assistance with complex functional and medical/nursing tasks at rates similar to other family caregivers People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. . 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 LTSSLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. , 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 People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. ' physical and mental health status and address the caregivers’ needs.

A slightly higher percentage of African American and Hispanic populations are caregivers compared to white, non-Hispanic Americans. Both African American and Hispanic caregivers are more likely to be higher-hour caregivers than other populations.

Family caregivers People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. 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 People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. 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 LTSSLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. , yet federal and state programs and policies to support them are limited. Many of the policies are tax-related: tax credits, tax deductions for out-of-pocket expenses, and tax 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 exemptionIncome that is excluded from taxation.. 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 creditTax credits directly reduce the amount of taxes owed..

Federal law allows people who itemize their income tax deductions to deduct certain LTSSLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. expenses, including those for a dependent. In 2020, the Internal Revenue Service allowed all taxpayers to deduct total qualified unreimbursed medical and LTSSLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. 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 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 if a portion of those services is for a dependent's care. Services include home careA range of services provided in the home, including health-related care, personal care, and supportive services., adult day services, and housekeeping.

Some employers support caregivers by providing paid family leave (see also Job-Protected Leave and Employment Discrimination Against Older Workers for information on discrimination against family caregivers People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. ). Some states give family members who care for an older relative limited support through MedicaidA joint federal/state program that provides health care and LTSS. However, to qualify for Medicaid LTSS, people must have extremely low assets and income, or they have to “spend down” most of their assets.- or state-funded home-care A range of services provided in the home, including health care, personal care, and supportive services. programs that provide some LTSSLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. . The National Family Caregiver People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. Support Program funds states' efforts to provide five basic services for family caregivers People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. :

  • 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 MedicareMedicare is the federal health insurance program for people who are age 65 or older, certain younger people with disabilities, and people with End-Stage Renal Disease (ESRD), (permanent kidney failure requiring dialysis or a transplant). & MedicaidA joint federal/state program that provides health care and LTSS. However, to qualify for Medicaid LTSS, people must have extremely low assets and income, or they have to “spend down” most of their assets. Services formally recognized the importance of assessing the needs of family caregivers People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. through its requirements for person-centered care planning. This requirement is in the 1915(i) MedicaidA joint federal/state program that provides health care and LTSS. However, to qualify for Medicaid LTSS, people must have extremely low assets and income, or they have to “spend down” most of their assets. 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 IncomeThe SSI program was designed to reduce poverty by providing basic cash support to people with low income and assets below certain thresholds who are aged, blind, or disabled. 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 for more information on benefits for people who live with their families).

In 2018, the Recognize, Assist, Include, Support, and Engage Family Caregivers People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. Act (also known as the RAISE Act) was signed into law. This law requires the Department of Health and Human Services to form a Family Caregiving Advisory Council, representing the public and private sectors, to advise the Department in developing a coordinated strategy to support family caregivers People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. .

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 supportsLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. (LTSSLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. ) 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.

These services can be offered through programs such as the National Family Caregiver People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. Program and other similar programs under the Older Americans Act and the Veteran Affairs Family Caregiver People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. Assistance Program. Federal and state governments should offer a range of culturally appropriate services geared to the needs of diverse family caregivers People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. , 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 People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. are well trained. They should be prepared to perform LTSSLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. tasks such as bathing as well as medical and nursing tasks. 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 LTSSLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. , including caregiver support services.

The Joint Commission (formerly known as the Joint Commission on Accreditation of Healthcare Organizations) should ensure that surveyors are trained to assess family caregiver People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. training and support programs.

Amend the Supplemental Security Income Program

The federal government should amend Supplemental Security IncomeThe SSI program was designed to reduce poverty by providing basic cash support to people with low income and assets below certain thresholds who are aged, blind, or disabled. 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 referred to as consumer-directed and self-directed models)  that permit payment to relatives in publicly funded home and community-based services (HCBSLong-term services and supports provided in individuals’ homes or in community settings, including adult day services, assisted living and other residential care settings.) programs. Such models would allow consumers and, if desired, their families to choose and direct the types of services and supports that best meet their needs. HCBSLong-term services and supports provided in individuals’ homes or in community settings, including adult day services, assisted living and other residential care settings. programs that offer participant-directed service options should allow participants to manage and direct their own services and supports, instead of having the provision of services managed by a home-care A range of services provided in the home, including health care, personal care, and supportive services. 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 LTSSLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. delivery system to pay relatives and friends who care for people with LTSSLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. needs.

Person- and family-centered service plans

The Centers for MedicareMedicare is the federal health insurance program for people who are age 65 or older, certain younger people with disabilities, and people with End-Stage Renal Disease (ESRD), (permanent kidney failure requiring dialysis or a transplant). & MedicaidA joint federal/state program that provides health care and LTSS. However, to qualify for Medicaid LTSS, people must have extremely low assets and income, or they have to “spend down” most of their assets. Services should require an assessment of the needs of all family caregivers People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. who provide assistance to MedicaidA joint federal/state program that provides health care and LTSS. However, to qualify for Medicaid LTSS, people must have extremely low assets and income, or they have to “spend down” most of their assets. HCBSLong-term services and supports provided in individuals’ homes or in community settings, including adult day services, assisted living and other residential care settings. program participants.

Publicly funded HCBSLong-term services and supports provided in individuals’ homes or in community settings, including adult day services, assisted living and other residential care settings. programs and hospital discharge planners as well as MedicareMedicare is the federal health insurance program for people who are age 65 or older, certain younger people with disabilities, and people with End-Stage Renal Disease (ESRD), (permanent kidney failure requiring dialysis or a transplant). Chronic-Care Coordination and Care Transition programs should assess family caregivers People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. ' 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 requirement to assess the needs of family caregivers People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. under the 1915(i) HCBSLong-term services and supports provided in individuals’ homes or in community settings, including adult day services, assisted living and other residential care settings. state plan option to all assessment tools for MedicaidA joint federal/state program that provides health care and LTSS. However, to qualify for Medicaid LTSS, people must have extremely low assets and income, or they have to “spend down” most of their assets. HCBSLong-term services and supports provided in individuals’ homes or in community settings, including adult day services, assisted living and other residential care settings. authorities. Such assessments will identify at-risk family caregivers People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. before they burn out, becoming 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 People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. 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 servicesServices that help individuals who have functional limitations with daily tasks, including bathing, dressing, eating, mobility, managing medications, light housekeeping, and laundry. in the home or adult day services, to ensure that more family caregivers People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. can have a break from their caregiving duties;
  • preserve and expand funding for respite care services regardless of whether the consumer is eligible for MedicaidA joint federal/state program that provides health care and LTSS. However, to qualify for Medicaid LTSS, people must have extremely low assets and income, or they have to “spend down” most of their assets. or a publicly funded program, or is a private-pay individual;
  • allow family caregivers People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. 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 LTSSLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. 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.