Family care expectations clash with shrinking availability, dementia needs

Americans believe that the family as a whole—especially a spouse or partner—is responsible for caring for an older adult.

Biological and stepchildren have the next highest levels of obligation, according to a new University of Michigan study. Even though with lighter responsibilities, many believe that lifelong friends also should pitch in.

And when an older adult has dementia, the family unit’s level of responsibility is seen as even higher, according to the research, published in Alzheimer’s & Dementia: Behavior & Socioeconomics of Aging and funded by the National Institute on Aging and the Michigan Center on the Demography of Aging.

“Our findings show that the public continues to see the family as highly responsible for the care of older adults, but that levels of responsibility vary by relationship type,” said demographer and sociologist Sarah Patterson, Ph.D., M.A., 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.

“The expectations for care networks of older adults are much larger when an older adult has dementia compared to when they do not—results mirroring what we find in the literature regarding actual behavior.”

Patterson and colleagues say family structures are changing with people having fewer children; on the other hand, there is a higher demand for care as the population is living longer.

“Given that families are often the frontline caregivers for older adults, we were interested in understanding more about the public opinion about levels of caregiving responsibility for an older adult among a series of potential caregivers,” Patterson said. “We also wanted to know whether the older adult having dementia, compared to only physical limitations, like difficulty with lower body movement, would impact beliefs about levels of care responsibility.”

Researchers asked these questions on the RAND American Life Panel survey—a nationally representative sample of nearly 2,000 individuals—in October 2024.

“These findings have important implications for how policies and programs are built,” Patterson said. “It is important to consider that they reflect the beliefs of people involved in these systems and be aware that more could be done to support caregivers.”

Public programs and health care settings should be inclusive of caregivers without a biological or legal relationship to an older adult, said co-author Kelsi Caywood, U-M doctoral student in sociology.

“These policies should make it easier for caregiving to be shared across multiple people rather than assuming care will come only from family members or a single caregiver,” she said. “Our survey found that people typically attribute caregiving responsibility to several relationships and describe that responsibility in degrees, such as none, some, most, almost all, rather than an all-or-nothing obligation.”

Expectations: For families, older adults

The intersection of an aging population and changing family structures reveals a complex puzzle. A key piece missing is clarity around expectations: Do we still expect families to be the primary caregivers for older adults when older adults’ families are changing?

Another study by Patterson and colleagues, recently published in the Journal of Family Theory and Review, goes hand in hand with the survey on public perceptions.

“In trying to understand expectations for various family members, I felt it was necessary to take a broader view of the current literature,” Patterson said. “Mainly, who within families and social networks do we expect to have responsibility for older adults’ care? Does that responsibility vary if the older adult has different forms of health issues?”

Findings across 45 studies reviewed show that there are still high expectations for families to provide care for older adults, and the main group expected to help is the adult children of those in need of care.

The paradox is that a growing proportion of older adults in the U.S. do not have children, plus family estrangement may also impact these relationships and dependency.

“If we continue to rely on a social expectation that adult children will provide care, there will be a set of older adults who experience care gaps,” Patterson said. “Many of our social systems are built upon these embedded social expectations. Hospitals and community services, for example, tend to assume that older adults have families to meet their care needs.

“We need to be aware that when social safety nets and public services are designed based on these expectations, older adults who are childless, estranged—or whose children are unable to help—will end up without the care they need.”

Researchers found surprising the relative lack of studies on expectations for families in the U.S. compared to other nations.

“Because we focused on the U.S. in the initial stages of our study, we didn’t review research from other countries,” Patterson said. “Later, we discovered many international studies, especially from China, that explore children’s obligations for care. Our next step is to review global studies and survey methods to develop better ways of measuring care expectations—including different relationships, gender roles and types of care tasks.”

Study #1: Beliefs about levels of care responsibility for older adults in need: Differences by relationship and the presence of dementia (DOI: 10.1002/bsa3.70066)

Study #2: Expectations for Families to Care for Older Adults in the United States: Rapid Scoping Review 2011-2023 (DOI: 10.1111/jftr.70042)