High Intensity, Persistent Burden: Family Caregiving Across the Long-term Care Continuum and Policy Implications

Abstract

Family caregivers provide essential support to older adults with disabilities from the community to nursing home settings. Yet little is known about how caregiving intensity and caregiver well-being differ across settings. Using pooled 2021–2024 NHATS/NSOC data, we conducted repeated cross-sectional analyses of primary caregivers of U.S. adults aged 71+ with disability residing in community, residential care, and nursing home settings. We compared caregiving experiences across settings. Overall, 60.4% of older adults had an identified caregiver, including 74.4% of nursing home residents, 63.8% of residential care residents, and 58.8% of community-dwelling adults. Caregivers of community-dwelling adults had the highest average caregiving hours (34.7 hours/week), compared to caregivers of older adults in residential care (14.4) and nursing homes (13.7). Depressive symptoms, anxiety, and financial difficulty were similar across settings. Emotional difficulty was more common among caregivers of residential care (46.7%) and nursing home residents (43.5%) than community caregivers (31.5%). Caregivers in the community were more likely to forgo social activities due to caregiving (26.8%) but were also more likely to report substantial perceived caregiving gains (score ≥6 on an 8-point scale; 72.0%). Caregiving persists in institutional settings, with responsibilities shifting rather than disappearing, underscoring the need for supports across settings.