About half of U.S. older adults with a disability and paid help at home have both family and paid caregivers sharing the same routine daily tasks, new research shows.1 This finding underscores the importance of efforts to improve coordination and cooperation between paid caregivers (such as home health aides and personal care assistants) and unpaid family and friends, a team of researchers led by Chanee Fabius of Johns Hopkins University reports.
Those living with dementia—who often have larger networks of caregivers and need more intensive support—were more likely to have both paid and family caregivers assisting with the same activities, particularly eating, bathing, and dressing, they find.
Caregivers for Certain Groups of Older People Frequently Share Tasks
Using National Health and Aging Trends Study (NHATS) data, the researchers analyzed a nationally representative sample of 440 Medicare recipients ages 65 and older receiving paid help with at least one ongoing self-care, mobility, or medical activity because of their health or physical functioning.
The researchers report that family and paid caregivers work together on activities such as bathing or meal assistance. Having family and paid caregivers sharing the same roles is more common among those ages 85 and older, those living with dementia, those with a larger number of helpers, those receiving help with three or more types of self-care or mobility activities, and those receiving 40 or more hours of care per week, they find.
The researchers were surprised to find that older adults enrolled in both Medicare and Medicaid were more likely to receive care solely from paid caregivers across several activities like dressing and mobility related tasks. This pattern likely reflects guidelines related to Medicaid-funded home-based care, which can vary across states.
Better Coordination Key to Avoiding Unmet Needs
Older adults’ needs for assistance frequently exceed available paid services. Family caregivers often coordinate, manage, and direct the role of paid caregivers, making cooperation crucial, the researchers argue.
The researchers point to an earlier study also led by Fabius using NHATS data that shows that older people with dementia face an especially high risk of having crucial needs go unmet compared with their counterparts without dementia.2 Another recent study also based on NHATS data found that older people with paid in-home caregivers are more than twice as likely to go without needed help than their peers in residential care facilities, with consequences such as missing medication, sitting in soiled clothing, or skipping meals. 3
With Medicaid shifting funding from nursing facilities to home care in community settings, these findings have implications for Medicaid-related initiatives aimed at expanding the roles, training, and compensation of paid home caregivers and supporting family caregivers, the researchers argue. Older adults’ needs are better met when all caregivers are included in care planning and their roles are clarified, information is systematically shared, and time is spent familiarizing caregivers with individuals’ routines and preferences, the researchers suggest.
Identifying Those Living With Dementia Who Have the Greatest Need for Care
Another study based on NHATS data tracked older adults living in the community with dementia, examining patterns in paid and family care use during the 5-year period before they moved to a nursing home or died.4
The study, led by Jennifer Reckrey of New York University’s Grossman School of Medicine, identified three patterns in paid and family care use. The first group (22.4% of the older adults surveyed) had few hours of paid care (ranging 1.6 to 6.4 hours weekly) that remained stable over time, but had high family caregiving hours (82 to 133.9 weekly) that increased steadily during the period studied. This group was more likely than other survey respondents to be non-white, receive help with personal self-care tasks, and have multiple medical conditions, symptoms of depression, and report social isolation, the researchers write.
A second group (more than 60% of those surveyed) had low or no paid care and moderate family hours care that remained stable overtime. A third group, representing about 15% of the sample had moderate but increasing levels of both paid and family care over time.
The lack of a “cohesive system of long-term care in the United States contributes to highly variable access to paid care,” the researchers point out. The study identified a subset of older adults with dementia (the first group with few paid care hours but increasing family care hours) that may need more paid care than is available or than they can afford. The researchers argue that creating equitable access to paid care is an important way to support family caregivers and enable older adults living with dementia to live safely in the community as their care needs grow.
1 Chanee D. Fabius, Joseph J. Gallo, Julia G. Burgdorf, Quincy M. Samus, Maureen Skehan, Ian Stockwell, Jennifer L. Wolff, “Family Care Partners and Paid Caregivers: National Estimates of Role-Sharing in Home Care,” The Gerontologist 65, no. 2 (2024): gnae177. https://doi.org/10.1093/geront/gnae177
2 Chanee D. Fabius, Safiyyah M. Okoye, John Mulcahy, Julia G. Burgdorf, and Jennifer L. Wolff, “Associations Between Use of Paid Help and Care Experiences Among Medicare-Medicaid Enrolled Older Adults With and Without Dementia,” The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences (2022). https://doi.org/10.1093/geronb/gbac072
3 Meghan Jenkins Morales and Stephanie A. Robert, “Examining Consequences Related to Unmet Care Needs Across the Long-Term Care Continuum,” The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences 77, Supplement 1 (2022): S63-73. https://doi.org/10.1093/geronb/gbab210
4 Jennifer M. Reckrey, Lihua Li, Serena Zhan, Jennifer Wolff, Cynthia Yee, Katherine A Ornstein, “Caring Together: Trajectories of Paid and Family Caregiving Support to Those Living in the Community With Dementia,” The Journals of Gerontology: Series B: Psychological Sciences and Social Sciences, 77, S1 (2022) S11–20, https://doi.org/10.1093/geronb/gbac006
The National Health and Aging Trends Study and National Study of Caregiving are funded by a grant from the National Institute on Aging (U01AG032947).