A new study from the University of Michigan provides striking statistics on a reality that 6 million Americans with dementia and their families live every day: a situation where people with dementia are given hundreds of hours per month of unpaid care from spouses, adult children and other relatives, and where some rely on paid help, including nursing home care.
The study reveals major differences in the potential availability of family caregivers depending on the sex, race, ethnicity, level of education and family structure of the person with dementia. People with dementia who are female, black, low-income, or have a lower level of education are all less likely than their counterparts to have caring spouses available, but more likely to have adult children available to provide care.
The UM 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.
Published in the September issue of Health Affairs, the study is based on in-depth interviews conducted between 2002 and 2014 with a national sample of nearly 5,000 people with dementia. The data comes from the Health and Retirement Study, which is based at UM’s Institute for Social Research.
In total, 62% of people with dementia did not have a spouse or partner living with them. Another 13% lived with a spouse or partner who needed help with activities of daily living. Only 24% lived with a spouse whose abilities were not limited.
A quarter of older people with dementia lived with an adult child, and an additional 42% had at least one adult child living within a 10 mile radius. But 23% did not have adult children living with or near them.
The study also found that many adults with dementia receive informal or unpaid care from multiple sources, not only spouses and adult children, but other relatives and friends.
“We know a lot about the provision of acute care by family members and other unpaid caregivers, but we don’t know as much about the potential availability of family members to help people with dementia.” said HwaJung Choi, lead author of the study and a research assistant professor in the Department of Internal Medicine at UM Faculty of Medicine and the Department of Health Management and Policy at the Faculty of Public Health.
“This despite the fact that availability of family members, such as spouse’s health status and residential distance from adult children, is an important determinant of the type of health care that people with dementia will use or will receive. If they have no one, the only choice for them as their condition progresses may be full-time nursing home care, which is largely paid for through the Medicaid system.
The findings of the new study by Choi and colleagues could inform public policy discussions to assess the potential role of family members in providing long-term care to people with dementia, compensating those who provide care. home care for relatives and determining the optimal coverage of professional home care.
- Kind: Women with dementia were much more likely than men to have no spouse at home, with 75% of women in this situation compared to 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 partners who are fully able to take care of themselves, compared to 38% of men with dementia.
- Race and ethnicity: People with dementia who are black and non-Hispanic are the least likely to have a spouse; 29% reported having one, compared to 39% of non-Hispanic white adults and 42% of Hispanic adults with dementia. Hispanic seniors with dementia were much more likely to have an adult child living with them (40%) than non-Hispanic whites (18%) and blacks (31%).
- Income and education: The most educated and wealthiest people in the household were the most likely to have a spouse and to have a spouse without limitations. In contrast, people with more 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 such as bathing, dressing, and eating, 19% said they received no help with these tasks. Another 50% received help from a spouse, adult child or other unpaid caregivers, and 44% received paid help. Spouses provided more hours of help than adult children. However, many more people with dementia and disabilities received help from adult children (27%) than from spouses (18%).
- Transition to the retirement 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 during the follow-up interview two years later.
Almost a third of those who did not have an adult child were receiving nursing home care at the end of this period, as were a quarter of those who did not have an adult child living under 16. km from them. By comparison, 11% of those who had an adult child living with them at the first moment had moved to a nursing home after two years.
“Given the prevalence of dementia and the high cost of home and long-term care, it is important and timely to find ways to support family caregivers and better understand the challenges they face,” said Cathleen Connell, lead author of the study and professor at the UM School of Public Health Department of Health Behavior and Health Education.
“As we have documented, just having a spouse or child living nearby does not guarantee that the care needs of a family member with dementia can be met. A more nuanced view of family availability is needed to fully appreciate the needs, resources and options during the course of this progressive disease. “
Paid help to compensate for family help
Paid professional help, whether at home or in a nursing home, may not entirely replace the kind of care a family member can provide, Choi said. And studies have shown that spouses and children of people with dementia value the ability to care for their loved one.
But having access to occasional home help to give family members a break or to help them with the most difficult or physically demanding tasks can make a big difference, she said. The rest of the time, the resident family member may provide important supervision to ensure the safety and comfort of people with dementia.
“The main goal of paid home care, or multiple sources of home care for other family members and friends, is to ease the burden on the primary caregiver so that they can continue to care for the affected person. of dementia, ”Choi said.
This is particularly important if the primary caregiver also has to work for pay; most adult children of people with dementia are of working age. Their ability to continue working – and their long-term economic opportunities – can be affected by the availability of care resources, paid and unpaid help. Adult children of black and low-income adults with dementia are likely more affected due to the reduced availability of spouses and the limited financial resources of these individuals.
“In addition to its implications for policy makers, our study is an important reminder for clinicians caring for people with dementia to open discussions about the extent and availability of family caregivers as early as possible,” he said. said co-author Kenneth Langa, Professor Cyrus Sturgis. at UM Medical School, Institute for Social Research and Veterans Affairs Ann Arbor Healthcare System.
“Taking stock of the care resources available to dementia patients before they are needed can help avoid crises, misunderstandings between family members and, hopefully, make it easier to stay at home. as long as possible. “
Choi says the current study did not examine the ability of families to afford paid home help or pay for nursing home care. It also did not examine the health outcomes or total health care costs of people with dementia based on their family circumstances or paid care use. This is what his continued research will examine.
“If we can compensate family caregivers for their care and provide them with the education and training they need, we can help people with dementia live longer in a community setting, with a better quality of life, everything potentially reducing public spending on nursing home care, “she said.
In addition to Choi, Connell and Langa, the study authors include UM professors Michele Heisler and Edward Norton and doctoral student Tsai-Chin Cho. All except Cho are members of the UM Institute for Healthcare Policy and Innovation.
- Reference: Health Affairs 40, n ° 9 (2021), DOI: 10.1377 / hlthaff.2021.00280