Ann Arbor Times

A recent study from the University of Michigan finds that about 26% of households and immediate families with older adults include a person living with dementia. The percentage increases to 37% when considering extended families of adults aged 65 and older. Overall, approximately 21% of Americans over age 65 have dementia.

The research, funded by the National Institutes of Health, addresses a gap in national data regarding how many families are affected by dementia within their household or family networks. Previous estimates have typically focused on the prevalence among the elderly population rather than their family structures.

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

Friedman and her colleagues identified that understanding which families are impacted is crucial because relatives often become care partners for those with dementia. “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.

Caregiver networks supporting older adults with dementia tend to be larger and more likely to involve extended family members compared to other caregiving situations. Even if not all extended relatives serve as direct caregivers, they can still feel effects from having a relative diagnosed with dementia.

“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.”

The researchers argue that quantifying these broader impacts on extended families is necessary so support systems can better address real-world needs faced by millions across the country. Asking patients during primary care visits if they live with or have relatives outside their home who have dementia may help identify those at risk for caregiving responsibilities and related 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 added. “Many members of these families may need support to make the caregiving journey more manageable and prevent any potentially negative consequences of caregiving.”