Dementia’s broad reach: More than 1 in 4 families of older adults at risk for providing care

About 26% of both households and immediate families of older adults include an individual with dementia—often requiring relatives to step into unexpected caregiving roles, according to a new University of Michigan study.

This figure rises to 37% among extended families of adults 65 and older, the research shows. Overall, about 21% of older adults 65 have dementia.

The study, funded by the National Institutes of Health, offers new estimates of dementia among American families of older adults. Estimates are more typically made for the older adult population.

“We found that a substantial number of families are potentially affected by the experience of having a relative with dementia,” said Esther Friedman, Ph.D., research associate professor at the U-M Institute for Social Research.

After reviewing existing literature, Friedman and colleagues found a significant gap: There were no national estimates on the likelihood of having an older adult with dementia within one’s household, immediate family or extended family.

This lack of data is critical, considering family members are highly likely to become care partners for an older relative with dementia. Understanding this “pool” of potential caregivers is crucial for developing and implementing effective interventions and support systems, Friedman said.

“With the aging of the U.S. population, it is becoming increasingly important to know how being part of a household, immediate family and extended family of an older adult with dementia will affect the lives of individuals, families and society,” she said.

Research indicates that caregiver networks assisting older adults with dementia are typically larger and more likely to include extended family members. Even if some extended family members are less likely to serve as direct caregivers, having a relative with dementia can still affect them.

“Even well before family members begin serving as caregivers to a relative, they may already be preparing to provide care,” Friedman said. “Maybe moving closer to parents with dementia or shifting work hours. It could affect decisions about purchasing long-term care insurance, allocating resources to paid long-term services and supports, or planning for the future possibility of dementia.”

Quantifying this broader impact on extended families is crucial to ensure that support systems are designed to meet the real-world needs of millions of affected families, according to Friedman. Asking if people are living with or have a relative outside the household with dementia during primary care visits could be a way to identify individuals at risk of being caregivers and facing associated health risks.

With new efforts to integrate care for patients with support for their caregivers, it will become increasingly important for medical professionals to understand the full network of potential caregivers, Friedman said.

“A large percentage of U.S. older adults’ families include a relative with dementia,” she said. “Many members of these families may need support to make the caregiving journey more manageable and prevent any potentially negative consequences of caregiving.”

Study: Nearly 4 in 10 extended families of older adults in the United States include an older relative with dementia (DOI: 10.1002/alz.70451)