“`html

Friends, former partners, and neighbors are increasingly involved in caring for elderly individuals with dementia—yet surveys and policies continue to behave as though only spouses and children are significant.

A recent University of Michigan research, funded by the National Institute on Aging of the National Institutes of Health, illustrates how antiquated definitions of “family” leave caregivers overlooked and systems unready for America’s aging challenge.

In 2022, 5.2 million family members and other unpaid caregivers attended to an adult aged 65 and above living with dementia.

“Caring for an elderly individual with dementia is a familial and community endeavor,” stated demographer and sociologist Sarah Patterson, a research assistant professor at the Survey Research Center and an affiliate at the Population Studies Center, both at the U-M Institute for Social Research. “Our findings revealed that it wasn’t solely the ‘nuclear’ family members, such as partners or adult children, who were aiding these older individuals in our community, but also extended relatives and friends contributing.”

Researchers indicate that caregiving policies and societal norms frequently construe family narrowly—concentrating solely on legal or biological connections. Such a definition fails to encompass the broader, more adaptable ways in which study participants perceive family, kinship, and care in practice.

“Numerous participants characterized neighbors, paid caregivers, and long-term friends as family or ‘like’ family,” remarked Kelsi Caywood, a doctoral student in sociology at U-M. “Definitions of family can differ tremendously, although often in consistent and justifiable manners. For example, those who provided sustained assistance and developed emotional bonds with an elderly individual were often considered family.”

Drawing from six focus groups involving 33 family and friend caregivers, the results, published in the American Journal of Alzheimer’s Disease and Other Dementias, highlight a notable disconnect. While existing surveys narrowly characterize family, the lived experiences of caregivers demonstrate they frequently depend on wider, more flexible support networks.

“One of our participants stated: ‘Families can be complicated, can’t they?’” Patterson noted. “Our findings indicate that the family dynamics of older adults significantly influence their care and those providing that care. Memory loss could add complexity to these familial histories, occasionally hindering older adults from remembering negative dynamics, involving either their own or others’ conduct. Even caregivers who are not family felt the effects of these dynamics on their care responsibilities.”

As caregiving networks diversify and incorporate unconventional and nonbiological connections, the study encourages researchers and policymakers to broaden their definitions and assessments of “family” and caregiving roles in surveys and support mechanisms.

“Given that older adults with dementia often depend on an extensive network, we must ensure that our communities support both those affected by dementia and their caregivers,” Patterson stated. “Moreover, we discovered a tremendous lack of foresight regarding later-life care. This signals that the public should emphasize early care planning, and policymakers ought to endorse initiatives that promote it.”

Many individuals find themselves as caregivers unexpectedly, rather than through a prearranged care plan, researchers have noted, emphasizing that few older adults have made such preparations. The investigation also underscores that limited family availability greatly affects caregiving.

“Not every older adult requiring care has relatives to assist them, especially those with very small families, strained relationships, or no surviving kin,” Caywood added. “Consequently, individual caregivers may end up bearing more caregiving duties than they anticipated, with minimal additional caregivers to rely upon.”

For Caywood, Patterson, and their associates, this research is part of a broader initiative aimed at formulating survey items to enhance the understanding of the caregiving experience within the framework of family and social network dynamics, alongside the context of the care recipient’s memory loss.

“We will persist in analyzing data regarding who we expect to provide care for older adults with dementia amid shifting family structures,” Patterson mentioned. “For example, stepfamilies often operate differently than biological families, and caregiving dynamics can evolve in response to varying impairments experienced by older adults. Upcoming projects also aim to explore whether we anticipate lifelong friends to assist with later-life care requirements, along with caregivers’ perceptions of choice.”

“`