Talking with U of M

Talking family caregivers with U of M

Joe Gaugler

There are an estimated 53 million caregivers in the U.S. Additionally, the number of Minnesotans turning 65 in this decade (about 285,000) will be greater than the past four decades combined

November is National Family Caregivers Month and Joseph Gaugler, with the University of Minnesota School of Public Health, answers questions about who family caregivers are, what they do and common challenges they face.

Q: Who can be a family caregiver?
Prof. Gaugler: Caregivers of older persons are most often spouses/partners or adult daughters. According to a 2020 report, over 60% of caregivers are women. Close to 9 in 10 caregivers provide help to a relative, with half of caregivers providing help to a parent or parent-in-law.

Q: What do family caregivers do?
Prof. Gaugler: On average, caregivers spend nearly 24 hours per week providing assistance. Six in 10 caregivers provide help for at least one activity of daily living (e.g., getting in and out of bed or chairs, getting dressed, bathing/showering). Family caregivers also perform tasks that healthcare professionals do. Fifty-eight percent of caregivers indicate they assist with wound care, tube feeding, or similar medical/nursing tasks. 

Q: What are common challenges family caregivers face?
Prof. Gaugler: Nearly 1 in 4 caregivers report that caregiving has made their health worse. Nearly 4 in 10 caregivers indicate that their caregiving situation is highly stressful, and 1 in 5 caregivers feel alone in addition to feeling a high financial strain due to care provision. Over 60% of caregivers also indicate that caregiving has influenced their employment due to reductions in hours, leaves of absence, going in late, and leaving early. It is important to note that not all of the feelings associated with caregiving are negative; half of caregivers report that providing help gives them a sense of purpose.  

Q: What should a family caregiver do if they’re feeling overwhelmed?
Prof. Gaugler: It is important for family caregivers to realize that they are not alone, and that there are a number of resources to help them navigate their caregiving journeys. The Family Caregiving Alliance has a number of important resources, including education, tip sheets, webinars and videos, online support groups, and the Family Care Navigator, which lists caregiving resources by state. For more local resources, caregivers can contact their local Area Agency on Aging, which offers family caregiving support through a number of programs. The AARP also maintains a Caregiver Resource Center, which offers a wealth of information, guidance, and opportunities to connect with other caregivers and professionals. If a family caregiver needs a break, I would recommend seeking out respite services in their local area; for example, the ARCH National Respite and Resource Network offers a respite locator and caregivers can also use the National Adult Day Services Association’s search tool to find a nearby adult day program. Many national organizations also provide family caregiving education and resources that are specific to the care recipient’s condition, such as the Alzheimer’s Association and the National Institute on Aging for Alzheimer’s disease and related dementias and the American Cancer Society and National Cancer Institute for various types of cancer.

Q: What are you doing to advance research on family caregivers?
Prof. Gaugler: Our research team, the Families and Long Term Care Projects, is conducting a number of studies aimed at enhancing the support family caregivers receive, particularly family members of people with dementia. One study is evaluating a support program for family caregivers of cognitively impaired relatives living in nursing homes or similar residential settings. We also recently received supplemental funding to examine the impact of COVID-19 on our program as well as the lives of caregivers and residents. A second study is examining the integration of dementia family caregiver support and training in adult day services across the U.S. that is delivered by staff. We were recently named the BOLD Public Health Center of Excellence on Dementia Caregiving by the Centers for Disease Control and Prevention. The main objective of this Center is to disseminate tools and evidence-based support to local, tribal, and other public health departments across the U.S. that support family caregivers of people with dementia. Finally, the Center for Healthy Aging and Innovation as well as the Minnesota Northstar Geriatric Workforce Enhancement Program feature robust community engagement and educational efforts so that families themselves are kept aware of available resources and new knowledge related to caregiving.

Caregiving for older people in the U.S. is not just a personal issue; it is a public health concern.  Earlier this year a book that I edited, Bridging the Family Care Gap, was published. Bridging the Family Care Gap features some of the foremost researchers and advocates in the field and outlines a series of policy, practice, and scientific innovations that can help to support families and communities that assist older people with health needs. The recommendations of Bridging the Family Care Gap align with a major milestone that took place in September 2022: the final report of the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregiving Advisory Council, which was delivered to Congress to develop a national strategy to support family caregivers.

Joseph Gaugler is the Robert L. Kane Endowed Chair in Long-Term Care and Aging, professor and director of the Center for Healthy Aging and Innovation in the University of Minnesota School of Public Health. His research interests include the sources and effectiveness of long-term care for older adults with dementia and the effectiveness of community-based and psychosocial services for older adults with memory concerns and their caregiving families. 

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