A new study provides stark statistics about a reality that 6 million Americans with dementia and their families live every day: one where people with dementia receive hundreds of hours a month in unpaid care from spouses, adult children and other relatives, and where some rely on paid help including nursing home care. The study finds major differences in potential family caregiver availability by the gender, race, ethnicity, education level and family structure of the person with dementia. The study also shows that the immediate availability of adult children is directly associated with the chances that a person with dementia will continue to live at home or move to a nursing home.
In all, 62% of people with dementia didn’t have a spouse or partner living with them. Another 13% lived with a spouse or partner who needed help with daily living activities themselves. Only 24% lived with a spouse who had no limitations on their abilities.
One-quarter of older adults with dementia lived with an adult child, and an additional 42% had at least one adult child living within 10 miles. But 23% had no adult children living with them or close by. The study also found that many adults with dementia receive informal or unpaid care from multiple sources, not just from spouses and adult children but other relatives and friends.
The findings of the study could inform public policy discussions to assess the potential role of family members in providing long-term care for people with dementia, compensate individuals who provide in-home care for relatives, and determine optimal coverage of professional in-home care.
Gender: Women with dementia were much more likely than men to have no spouse at home, with 75% of women in this situation compared with 41% of men. Women with spouses were much more likely to have spouses who needed help with their own daily activities. Only 16% of women with dementia live with spouses who are fully capable of taking care of themselves, compared with 38% of men with dementia.
Race and ethnicity: People with dementia who are Black and not Hispanic are least likely to have a spouse; 29% reported having one, compared with 39% of White, non-Hispanic adults and 42% of Hispanic adults with dementia. Hispanic older adults with dementia were much more likely to have an adult child living with them (40%) compared with non-Hispanic whites (18%) and Blacks (31%).
Income and education: Those with the highest levels of education and household wealth were the most likely to have a spouse, and to have a spouse with no limitations. On the other hand, those with higher education or wealth were much less likely to have an adult child living with them.
Dementia plus disability: When the researchers looked at the subgroup that needed help with activities like bathing, dressing and eating, 19% said they didn’t get any help with these tasks. Another 50% got help from a spouse, adult child, or other unpaid helpers, and 44% got paid help. Spouses provided more hours of help than adult children. However, far more people with dementia and disability received help from adult children (27%) than spouses (18%).
Transition to nursing home: The researchers also looked at adults with dementia who were living in the community at the time of their first interview, and then estimated the odds that they had moved to a nursing home by the follow-up interview two years later.
Nearly one-third of those with no adult children were receiving nursing home care by the end of that time, as were one-quarter of those without an adult child living within 10 miles of them. By comparison, 11% of those who had an adult child living with them at the first time point had moved to a nursing home by the end of two years. Given the prevalence of dementia and the high cost of in-home and long-term care, finding ways to support family caregivers and better understand the challenges they face is timely and important.
Paid help to offset family-based help
Professional paid help – whether in the home or in a nursing home – may not totally replace the type of care that a family member can provide, Choi noted. And studies have shown that the spouses and children of people with dementia place value on being able to provide care for their loved one.
But access to occasional in-home help to give family members respite, or to assist them with the most difficult or physically demanding tasks, can make a big difference, she added. The rest of the time, the live-in family member can provide important monitoring to keep people with dementia safe and comfortable.
The main point of paid in-home care, or multiple sources of in-home care from other family members and friends, is to alleviate the main caregiver’s burden so they can continue to care for the person with dementia.
This is especially important if the primary caregiver also needs to work for pay; most adult children of people with dementia are in their prime working ages. Their ability to continue working – and their long-term economic opportunity — can be affected by the availability of care resources, paid and unpaid help. Adult children of Black and low-income adults with dementia are probably more affected because of lower spousal availability and limited financial resources among these individuals.
If we can compensate family helpers for their caregiving and provide the education and training that they need, we can help people with dementia to live in community settings longer, with a higher quality of life, while potentially reducing public spending on nursing home care.