“How can we determine if somebody ‘should’ be [a caregiver]?” A daughter caring for her mother with cognitive impairment asked this during a caregiver focus group in the summer of 2023. She continued, “I have my nephew, my niece, my sister-in-law, but [should they be expected to help] just because they are related to my mom?”

In many ways, this statement, this back-and-forth gray area, is reflective of a larger and increasingly important topic in the United States: What are the expectations for family members to care for older adults with chronic health conditions, especially dementia, and how do potential caregivers step into this role?

Unpaid Family Caregiving in the U.S.

As the U.S. population continues to grow older, the number of adults with Alzheimer’s and Related Dementias (ADRD) is expected to double by 2050. These staggering numbers create growing concern for the experiences of and the need for unpaid family caregivers, who are most expected to provide care for the older adults in their lives.

Becoming a family caregiver can be sudden, demanding, and often happens without formal plans. In particular, helping an older adult with ADRD can require greater levels of more intensive care. These caregivers may need to provide around 105 more hours of care per month, despite already relying on larger groups of support, compared to caregivers for older adults without ADRD.

But, what does it mean to be “family,” and what care can we expect from that “family”?

Methods

In our recent publication, we investigated how family and friends caring for those with ADRD define “family” and care expectations, especially in the context of diverse identities and family structures. We conducted six focus groups with 33 total participants, who all cared for an older adult (i.e., 65 years or older) with memory issues. Focus groups, a group interview run by a trained facilitator, are a highly effective method for investigating common themes, attitudes, and experiences directly from the community.

We focused on recruiting different types of caregivers beyond spouses and adult children to prioritize and uplift underrepresented voices in research, such as extended family, friends, young adults (i.e., 18 to 25 years old), and those who identified as LGBTQ+. Furthermore, an official ADRD diagnosis was not required because racial and ethnic minorities in the U.S. are less likely to receive dementia diagnoses, medical care, and treatment.

Who is Expected to Provide Care?

Many themes surfaced in these focus groups, with the first being expectations for who should provide care. Initially, many participants defaulted to a hierarchical categorization of responsibility to explain their expectations: First, most respondents felt that immediate family members should provide care, then others beyond these relations can help, if necessary. For example, a participant who cared for her cousin expressed the following about her cousin’s son: “I don’t think it’s my job. I think it’s his job.” Many people in the focus groups agreed with and echoed her sentiment; however, definitions of obligation and expectation became more complex as the focus groups went on.

A participant caring for a friend’s wife reflected, “I don’t know that there is [a hierarchy], because there can be exceptions to everything.” Furthermore, some participants expressed that their own marital status and family structure influenced their families’ expectations of them. A niece caring for her aunt revealed, “I have no husband. I have no children. So other people, if you say you can’t do something, they’re like, ‘I don’t know why not? You don’t have any kids!” Overall, care expectations are more complex than defaulting to biological and legal ties and are often influenced by other factors, such as marital status, whether or not one has children, and one’s perceived availability.

What About Friends?

Caregivers often need to interact with medical providers and legal services; therefore, caregivers without a biological and legal relationship, such as friends and neighbors, experience more barriers. For instance, they may be unable to make necessary end-of-life decisions and receive benefits, services, and protections meant for caregivers. Yet, caregiving from neighbors, friends, and chosen family may be the older adult’s only option.

After his friend passed away, a participant stepped up to care for his friend’s wife, who had no family to care for her. Put bluntly, he described the impact and importance of the care he provided: “[My friend’s wife] would not have survived six months without getting me involved in her life after her husband [my friend] died.”

Furthermore, participants seemed to use the act of providing care as a metric for who they considered to be “family,” especially for friends and neighbors. In other words, caregiving was seen as a way of “doing family.”

The Impact of Relationship Strain or Lack of Family

Relationship quality amongst family and friends also influenced the willingness of and expectations for individuals to become caregivers. An ex-husband providing care for his ex-wife expressed that “there’s nobody” helping him and that his ex-wife’s adult children “don’t want to spend time with [their mother], and they use me as an excuse for the reason why.” In the same focus group, a wife caring for her husband within a stepfamily stated, “My [biological] kids are fairly helpful, but I think…they’re doing it for me.”

These two accounts, when compared, illustrate how family dynamics and relationship quality influence expectations for who is able and willing to provide help when asked. Therefore, evaluating these factors is important for understanding and predicting who may provide care.

Similar to relationship quality, family structure is also relevant. Small families can have major constraints on who is available to provide care, which could result from estrangement, death, or being an only child. Many caregivers in small families expressed or agreed with the following sentiment, voiced by a young adult and only child, who helps care for her grandmother: “There’s nobody else…”

For instance, a participant caring for their friend’s father elaborated on these constraints by describing the relationship between their friend and his father: “His son…[is] not the best choice, to be honest. But [the father] doesn’t have…a lot of options. So, [his son] is doing it anyway.”

These statements are prime examples of how no caregiving experience occurs in a vacuum, void of social and political implications.

Broader Implications

Current definitions of “family” focus narrowly on biological and legal relationships: a husband, wife, and biological and stepchildren. However, definitions of “family” are more complex than these ties can describe. Modern-day U.S. family structures seem to be more accurately defined by an ever-changing, complex diversity, from LGBTQ+ relationships to extended family to chosen family to friends—many of whom are missed in caregiving research and surveys.

It is imperative that research reflects the diverse needs and identities of the community it wishes to serve. To provide support and respite services for unpaid family and friend caregivers, we must first understand who they are, how they feel, and what they need. Our research helps highlight the ways family expectations, dynamics, and sizes intertwine to affect if, how, and when an individual becomes a caregiver. Moreover, the very act of providing care can influence who is seen as family and who is not.

This knowledge has broader implications for public policy and survey development, which could generate insights for healthcare professionals in time-constrained clinical settings. More inclusive research is urgently needed to address the intersection of family, caregiving, and ADRD because, as a participant caring for her mother put it, “families are messy, aren’t they?”

Samantha M. Pantelic is an undergraduate senior at the University of Michigan, studying biopsychology, cognition, and neuroscience on a pre-medical track.

Kelsi Caywood is a PhD candidate in sociology at the University of Michigan and a National Institute on Aging (NIA) predoctoral trainee in demography at the University of Michigan Population Studies Center.

Sarah E. Patterson is a Research Assistant Professor in the Demography of Aging, Disability, and Care program (DADC) at the Survey Research Center (SRC) within the Institute for Social Research (ISR) at the University of Michigan. Her work is funded by a National Institute on Aging K99/R00 grant entitled “Caregiving, Complex Family and Kinship Ties, and Alzheimer’s Disease and Related Dementias (ADRD).” Follow her on Bluesky @spattersearch.bsky.social, and keep up to date with her work on The Patterson Lab website.