Family member availability predicts likelihood of unpaid care for people living with dementia

As dementia worsens, people may gradually lose the ability to prepare meals, bathe, get dressed, and otherwise care for themselves. The likelihood that people living with dementia rely on unpaid care rather than paid care depends on whether a spouse or adult children are available to be primary caregivers, according to an NIA-supported study at the University of Michigan. Conversely, people without family members available to care for them are more likely to require paid help from a long-term care facility. As reported recently in Health Affairs, national estimates suggest that available family members and other unpaid caregivers are an important consideration for how people with dementia can remain outside of a nursing home environment when they need help with everyday activities.

To assess how family member availability influences whether older adults with dementia receive unpaid care at home, the research team analyzed a sample from the Health and Retirement Study, a 30-year NIA-supported project also based at the University of Michigan. The investigators are studying the health of 26,000 Americans as they grow older.

Of nearly 5,000 participants aged 55 and older who were diagnosed with dementia, about 2,900 reported limitations with activities of daily life, like dressing and bathing, but did not live at a nursing facility. Because the older adults with dementia needed help with everyday activities, the team measured the hours per month from sources of paid care, such as from a paid nonfamily caregiver or nursing home employee, and unpaid care, such as from a spouse or adult child.

The researchers calculated national estimates of the pool of available family members who can serve as unpaid caregivers for people with dementia. They also compared the hours of care provided to adults based on whether they had an available family member. About 53% of adults without a spouse received unpaid help with daily activities (an average of 107 total hours per month), while 69% of adults with a spouse received unpaid help (an average of 173 total hours). In addition, 43% of adults without adult children received unpaid help (an average of 95 total hours), while 62% of adults with adult children received unpaid help (an average of 137 total hours).

The researchers then estimated how many people relied on paid caregivers. According to their analysis, having an adult child meant a lower likelihood of receiving any paid care (31%) than for those without a child (46%). And the likelihood of receiving care in a nursing home was significantly lower for those with an adult child than for those without, especially when the adult child co-resided with the adult living with dementia.

When the team compared sources of care by sex, race/ethnicity, and socioeconomic group, the data showed that women, those who were Black, and those of lower income were less likely than men, those who were white, and those of higher income to have an available spouse for unpaid care. But women, those who were Black, and those of lower income were more likely to have adult children as unpaid caregivers.

Taken together, these findings suggest that not having an adult child may be an important predictor of whether an adult with dementia will need to transition to paid care. The national estimates of the availability of family caregivers may help experts predict on a large scale whether people with dementia may need paid care, and the estimates could aid policymakers who wish to develop a national caregiving system that includes both paid and unpaid care for people with dementia. Future studies may be able to explore how different types of caregivers, both paid and unpaid, are involved as an adult with worsening dementia requires more intensive daily care.

This research was supported by NIA grants U01AG009740, K01AG057820, P30AG012846, and R01AG053972.

These activities relate to NIH’s AD+ADRD Research Implementation Milestones 13.D: Support secondary analysis of data from population-based and intervention studies with appropriate content related to informal and formal caregiving; 13.B: Launch research programs to develop and validate assessments of the psychological, financial, and physical health impact of caregiving; and 13.J: Expand research on the care workforce and supply of skilled labor.

Reference: Choi H, et al. Family Care Availability And Implications For Informal And Formal Care Used By Adults With Dementia In The US. Health Affairs (Millwood). 2021;40(9):1359-1367. doi: 10.1377/hlthaff.2021.00280.