Nearly a third of Americans over age 50 provide regular care to an adult relative or friend with a health issue or disability, a new poll finds. But many of them don’t know about, or use, local resources that could help them with caregiving.
And about 20% of these caregivers are like highwire acrobats working without a net, the poll reveals. They’re taking care of someone else with health needs, but without close friends or family members to pitch in if they needed help with their own health concerns.
The new findings from the University of Michigan National Poll on Healthy Aging could inform caregiver-related policy discussions at state and national levels.
It also suggests a need for increased awareness of existing programs such as adult day programs and respite care, and local organizations like Area Agencies on Aging, that address the needs of adults aged 60 and older and their caregivers. Such programs can connect caregivers to services, support, and resources that can reduce their burden and improve the day-to-day care they provide.
The poll is based at the U-M Institute for Healthcare Policy and Innovation and supported by Michigan Medicine, U-M’s academic medical center, with additional support for Michigan-specific polling from the Michigan Health Endowment Fund.
Caregiving and caregiver support
In all, the poll finds 22% of people over 50 served as caregivers in the last year for an adult with health or disability needs who they don’t live with, and 12% did so for someone they live with. Taken together, 32% of all people over 50 served as caregivers for at least one adult with health or disability needs.
In all, 17% of all caregivers say they do not have the support they need to manage their caregiving responsibilities.
But the percentage saying this was much higher — 41%— among the caregivers who also reported they did not have close friends or family to depend on for help with their own needs.
That’s compared with a much lower percentage saying they don’t have support for caregiving responsibilities — just 11% — among caregivers who do have friends and family to depend on for their own health needs.
“This is an issue we need to keep our eyes on as our nation continues to grapple with the growing demand for unpaid, untrained caregiving for older adults and for people with disabilities and serious health needs,” said Florence Johnson, Ph.D., M.S.N., M.H.A., an Assistant Professor in the U-M School of Nursing and member of IHPI. “Our poll shows that 23% of all people over 50, including many who are already caregivers for one or more adults, may lack family or friends to help them if they needed support with health needs. But they may not know where or how to find services.”
Financial impacts of caregiving
The poll asked about the financial impact of caregiving for a relative or friend with health issues or a disability.
Caregivers often take time away from work if they’re employed or spend money on transportation and other expenses to provide care. But most family or friend caregivers cannot receive pay from insurance or government sources for their efforts, except in rare circumstances.
In all, 34% of caregivers said caregiving resulted in financial challenges for them. The percentage was higher (40%) among those aged 50 to 64 than those over age 65 (27%). It was also higher among caregivers whose own physical or mental health is fair or poor, or who have a disability themselves.
The percentage citing a financial challenge from caregiving was also higher, at 47%, among caregivers who say they don’t have family or friends to help with their own health needs.
Among all caregivers who feel they don’t have enough support to manage their caregiving responsibilities, the poll team asked what would help them most.
The top answer by far, mentioned by 69%, was financial assistance or subsidies for caregiving expenses.
Day programs and respite care: Lack of awareness and use
The poll also asked caregivers about their awareness of, and use of, programs that many communities have made available for people with disabilities and older adults.
The first was adult day programs, where a caregiver can bring their relative or friend to take part in supervised, structured activities for a few hours to a full day, together with other people in their age group or with similar conditions or disabilities. Such programs can give a caregiver a chance to take time for themselves or catch up on work, or just relieve stress.
Only 9% of caregivers said the person they care for had used such programs, while 60% said they hadn’t used one but the caregivers had heard of them. That left 21% of caregivers who haven’t ever heard of adult day programs and 10% who didn’t know if the person they care for had ever attended an adult day program.
The poll also suggests communities could use many channels to get the word out about adult day programs, and any costs or sliding-scale fees involved. Among caregivers who had heard of adult day programs, there was no one way that people most frequently reported using to hear about them.
Another option for caregivers and the people they care for is respite care, which provides a “break” from caregiving through a paid or unpaid helper coming to the home, a short-term stay in a residential facility, or an emergency respite (for example if a caregiver has a sudden health issue).
Among caregivers who felt they don’t have the support they need, 39% said that respite care or temporary relief from caregiving was a service that could help them the most with their caregiving responsibilities.
Yet only 11% of all caregivers had used any form of respite, while 57% hadn’t used it but had heard of it, and 32% had never heard of it. Male caregivers were much more likely to say they had never heard of it.
Of those caregivers who had used respite care, 33% said it was to take time for themselves, and 33% said it was to relieve stress and prevent burnout.
Poll director Jeffrey Kullgren, M.D., M.P.H., M.S., said it’s important for health care providers to be attuned to their patients’ roles as caregivers, as well as to the family or friend caregivers who may be taking care of them.
“We see a real awareness gap here, and health care providers can help by making sure that information about local resources is available in waiting areas, patient education packets and more,” he said. Kullgren is an Associate Professor of Internal Medicine at the U-M Medical School who provides primary care to veterans at the VA Ann Arbor Healthcare System
“If our patients are feeling unsupported or stressed as caregivers, it can affect their own mental and physical health, and their ability to keep up with healthy habits that are important for long-term healthy aging,” he added. “Making sure they know about adult day programs and respite care could be a way to help them make caregiving sustainable.”
Michigan findings
In addition to the national poll findings, the poll team analyzed data from Michigan residents over age 50 via the Michigan Poll on Healthy Aging with support from the Michigan Health Endowment Fund. Overall, Michigan results were in line with the national findings.
In all, 31% of Michiganders over 50 serve as caregivers to one or more adult family members or friends who have a health issue or disability. And 33% of these Michigan caregivers say that caregiving has resulted in financial challenges for them. Meanwhile, 17% say they don’t have the support they need to manage their caregiving responsibilities, and this percentage was higher among caregivers without close friends or family to depend on for help with their own needs.
In all, 19% of Michigan caregivers over 50, and 23% of all Michiganders over 50, say they do not have family members or close friends that they could depend on if they needed support with their daily needs.
But the poll shows that most of these Michigan caregivers don’t use or aren’t aware of programs designed to help with caregiving.
When asked about adult day programs, only 10% of Michigan caregivers said the person they care for had used such programs, while 50% said they hadn’t used one but the caregivers had heard of them. That left 26% of Michigan caregivers who hadn’t ever heard of adult day programs and 14% who didn’t know if the person they care for had ever attended an adult day program.
And only 15% of all Michigan caregivers had used any form of respite care, while 55% hadn’t used it but had heard of it, and 30% had never heard of it.
At the same time, among Michigan caregivers who felt they don’t have the support they need, 35% said that respite care or temporary relief from caregiving was a service that could help them the most with their caregiving responsibilities.
