Supporting Family Caregivers


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 September 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.

Federal and state programs to assist unpaid caregivers are limited, even though family and friends provide the bulk of LTSS in the US. In 2015 an estimated 43.5 million caregivers age 18 and older 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 LTSS that year.

Caregivers vary by age, relationship to the care recipient, cultural influences, and income. They also vary by the kind of care they provide. They may provide help with activities of daily livingActivities of daily living (ADLs) include: bathing or showering, dressing, getting in and out of bed or a chair, walking, using the toilet, and eating. (such as bathing and dressing) or instrumental activities ofIADLs include preparing meals, managing money, shopping for groceries or personal items, performing light or heavy housework, and using a telephone. daily living (such as paying bills and providing transportation). They also perform medical and nursing tasks—managing multiple medications and dressing wounds are two examples. Family caregivers often coordinate health care and help the recipient access services and supports that are available within the community. According to the Caregiving in the US 2015 national survey, 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. Most serve older people: Nearly eight in ten caregivers provide care to a relative or friend age 50 or older.

The mental and physical health needs of family caregivers of older adults deserve greater attention and support. Those most likely to shoulder the heaviest burden of this care are caregivers age 50 and older, according to the 2015 national survey. Family caregivers are providing increasingly complex care for their loved ones. Almost half (46 percent) of family caregivers report performing medical/nursing tasks, including medication management and wound care, often with little or no clinical instruction. 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. These people are the frontline support for millions of older Americans with chronic-care needs, often including mental health. It is imperative that professional providers who work with older adults in health care or home- and community-based settings assess and address the family caregivers’ physical and mental health status, too.

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.

What little help that unpaid caregivers get from existing federal and state programs typically comes in the form of tax credits and deductions. 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 (AGI). That threshold for taxpayers age 65 and older had been 7.5 percent; however, in 2017 it was increased to 10 percent as well.

Some employers also provide flexible spending accounts for employees, who can set aside up to $5,000 in pretax dollars. This money 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 the service is for the dependent’s care.

In 2000 the Older Americans Act (OAA) established the National Family Caregiver Support Program, which funds states to provide five basic services for family caregivers:

  • information about available services;
  • assistance in gaining access to 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 more information, see this chapter’s section The Older Americans Act.)

Some states give family members who care for older relatives limited support through Medicaid- or state-funded home-care programs and tax policies. These supports include respite care, cash allowances, tax incentives, and family leave policies (see Chapter 5, Employment: Time Off from Work for information on family medical leave; also see 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.

While these policies provide incentives for family caregiving, the Supplemental Security Income program reduces benefits for people who live with their families, creating a disincentive for family caregiving (see Chapter 6, Low-Income Assistance Programs: Supplemental Security Income, and this chapter’s section Expanding Home- and Community-Based Services for more information on benefits for people who live with their families).

Supporting Family Caregivers: Policy

National strategy to support family caregivers

In this policy: Federal

A national strategy should be developed to support family caregivers. Public and private sectors, including family caregivers, should advise and make recommendations on how to best address the challenges facing families in their caregiving roles.

Necessary programs and services to assist caregivers

In this policy: FederalState

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.

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 should ensure that surveyors are trained to assess family caregiver training and support programs.

Supplemental Security Income

In this policy: Federal

Supplemental Security Income rules should be amended so they do not reduce benefits for people living with family members (see Chapter 6, Low-Income Assistance: Supplemental Security Income).

Tax incentives

In this policy: FederalState

Tax credits or other financial assistance aimed at easing the cost of LTSS should be available for caregivers.

Employers should be encouraged to take advantage of existing tax incentives, such as flexible spending accounts for dependent care, to provide dependent- or family-care benefits.

Paying relatives for LTSS

In this policy: FederalState

Policymakers should promote the expansion of participant-directed (sometimes referred to as consumer-directed) 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, within the LTSS delivery system, policies to pay for relatives and friends who care for people with LTSS needs.

Person- and family-centered care plan

In this policy: FederalState

Federal and state governments should, as part of a person- and family-centered care plan, recognize and assess family caregivers’ needs through publicly funded HCBS programs, hospital discharge planning, chronic-care coordination and care transition programs, and other models of care under the Affordable Care Act.

Federal and state governments should ensure that when a family caregiver assessment is conducted, family caregivers are directly asked about their own health and well-being, their level of stress and feelings of being overwhelmed, needs for training in knowledge/skills for assisting the care recipients, and any additional services and support needs.

Centers for Medicare & Medicaid Services (CMS) should require assessment of the needs of all family caregivers who aid beneficiaries of Medicaid HCBS programs as well as those receiving chronic care under the Medicare program.

Advance care planning should be part of person- and family-centered care planning, as appropriate.

States should provide or refer caregivers to appropriate supportive services.

Service providers should be trained to recognize mental health and substance abuse disorders in family and other caregivers and should be required to refer them for services when needed.

Fraud protection

In this policy: FederalState

Programs and policies should be designed to protect consumers, guard against fraud and abuse, offer training to family members and friends, and provide sufficient oversight to ensure high-quality services.

Transitional care

In this policy: FederalState

States should enact legislation that requires hospitals to give patients the opportunity to designate a family caregiver and have that family caregiver’s name placed in the medical record; to timely notify the family caregiver of an impending transfer or discharge; and to provide instruction to the family caregiver about care tasks the caregiver may be asked to perform as part of the individual’s discharge plan.

CMS should take additional steps to ensure that hospital discharge planning requirements are effectively enforced.

Electronic health records

In this policy: FederalState

Federal and state governments should identify and engage family caregivers whenever the care plan depends upon having a family caregiver. Electronic health records and hospital discharge planning should include the family caregiver to facilitate better communication between patients, family members, and providers.