Study highlights paid caregiving gaps and needs for community-dwelling adults with dementia

Home health aides, personal care attendants, and other paid caregivers can augment support from family caregivers to help people with dementia live safely at home and in the community. But a recent NIA-funded study showed that only one in four community‐dwelling individuals with dementia received paid care, underscoring the need to make it more accessible.

The growing movement to care for people with dementia outside of the nursing home setting means more hands-on care delivered in the community. Researchers used data from the 2015 National Health and Aging Trends Study (NHATS), an NIA-funded nationally representative study of Medicare recipients 65 years and older, to identify 899 community-dwelling individuals with dementia, characterize paid caregiving among this group, and identify factors associated with receiving paid care. The findings were published in the Journal of the American Geriatrics Society.

Researchers found that only a quarter of people with dementia and about half of those with advanced dementia living in the community received paid care. Even with paid care, family caregivers provided more than half of reported care hours. Men, the unmarried, those with Medicaid, and those requiring more help with daily activities had the highest likelihood of receiving paid care. People in the middle-income range were less likely to receive paid care.

The results highlight that receiving paid care is not only associated with functional need but also financial resources and Medicaid. The authors noted that lower rates of paid caregiving among middle‐income individuals suggest that the middle class may face unique challenges, as they do not qualify for Medicaid‐funded home care or have the means to pay significant caregiving costs out of pocket.

The authors noted some limitations of their analysis. For example, paid care may also be associated with factors that were not assessed, like caregiver characteristics and behavioral symptoms associated with dementia.

Overall, the study highlights the need for new ways of making paid caregiving more accessible throughout the income spectrum to support family caregivers and respect the preferences of people with dementia to remain living in the community. Future research may examine the range of paid and family caregiving arrangements and how they change over time to meet the basic needs of individuals with dementia, as well as additional factors that may impact paid care, like the fear of loss of independence or introducing unfamiliar caregivers and the expectation that care come from family alone.

This research was supported by NIA grants R03AG060092, P30AG028741, and R01AG060967.

These activities relate to NIA's AD+ADRD Research Implementation Milestone 13.D, “Support secondary analysis of data from population based and intervention studies with appropriate content related to informal and formal caregiving.”

Reference: Reckrey JM, et al. Living in the Community With Dementia: Who Receives Paid Care? Journal of the American Geriatrics Society. 2020 Jan;68(1):186-191. Epub 2019 Nov 6. doi: 10.1111/jgs.16215.