Family Caregivers: The Role and the Support Around It
Most long-term care in the United States is provided by relatives and friends who are not paid for it. Research and public programs describe both what that role involves and where support for it is available.
Who counts as a family caregiver
Public agencies define a family caregiver broadly: a spouse, adult child, sibling, friend, or neighbor who helps someone with daily activities because of age, illness, or disability. Many have no formal training, and a large share also hold jobs or are raising children.
The role is often described as invisible in policy terms, because the work happens inside a household rather than inside a program.
What the research describes
The Family Caregiver Alliance and the National Institute on Aging both publish summaries of caregiver research. They describe caregiving as frequently meaningful and also associated with elevated rates of stress, depression, social isolation, and interruptions to paid work.
The same literature notes that support — respite, training, counseling, and connection with other caregivers — is consistently associated with better outcomes for the caregiver and often for the person receiving care.
Categories of support
Published resources group support into a few kinds: respite care that gives a caregiver a break, support groups and counseling, training in specific tasks such as safe transfers, financial assistance programs, and workplace protections such as the Family and Medical Leave Act.
Some states, including Pennsylvania, also allow Medicaid participants in certain programs to direct their own services, which can include hiring a relative as a paid caregiver.
Where to look locally
The Eldercare Locator, a service of the Administration for Community Living, connects callers to their local Area Agency on Aging, which is where most state-funded caregiver support programs are administered.
The Pennsylvania Department of Aging publishes the state's caregiver support programs and the contact details for each Area Agency on Aging.
Where this comes from
- Family Caregiver Alliance
- Eldercare Locator (Administration for Community Living)
- Pennsylvania Department of Aging
Companion America does not control these sites. This explainer summarizes what they publish; the originals are the authority.
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