Full Report (PDF)
More than 48 million people in the US provide care to parents, spouses, friends, and other people in their lives, providing help with a range of daily and household activities, medical tasks and coordination, transportation, financial management, and advocacy. In 2021, family caregivers provided about $600 billion worth of care—a figure larger than all spending on long-term services and supports (LTSS) in the US ($400 billion) that same year.
While the role may help family caregivers feel satisfied and give them more meaning in their lives, they also face challenges. Caregivers can feel stressed, overwhelmed, and lonely. They may also have physical and financial stressors related to taking care of children, keeping up with their jobs, and managing finances. Some care recipients, especially those with cognitive impairment or dementia, need a caregiver to be on call 24 hours a day. Family caregivers may be in poor emotional or physical health themselves.
The work of family caregiving can be challenging, and different services and supports can help family caregivers. Respite care is one of these supports. Respite is most often defined as care provided to an older adult or person with disabilities so that their family caregiver can get a short break from their care responsibilities. This paper focuses on respite care and how it fits into the larger set of services that family caregivers need and could benefit from. More than a third of family caregivers report wanting support like respite services, yet only 14 percent receive them, even as research indicates that caregivers who use respite have lower caregiver distress and better health and sense of well-being.
This paper explores respite, its impact on family caregivers, and barriers to its use. It also reviews federal and state programs that provide and/or pay for respite including some examples of innovative programs that exist in communities. The authors provide recommendations toward improvements in respite research and programs and offer insights on how some respite programs are being scaled up.