Study urges rethink as nontraditional caregivers step up in dementia care

Friends, ex-spouses and neighbors are playing a growing role in caring for older adults with dementia—yet surveys and policies still act as if only spouses and children matter.

A new University of Michigan study reveals how outdated definitions of “family” leave caregivers invisible and systems unprepared for America’s aging crisis. The research is published in the American Journal of Alzheimer’s Disease & Other Dementias.

In 2022, 5.2 million family and other unpaid caregivers provided care to an adult aged 65 and older who was living with dementia.

“Caregiving for an older adult with dementia is a family and community affair,” said 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.

“We found that it was not just the ‘nuclear’ family members, such as partners or adult children, who were providing help to these older adults in our community, but it was also extended family and friends chipping in.”

Researchers say that caregiving policies and social norms often define family narrowly—focusing only on legal or biological ties. Such a definition fails to capture the broader, more flexible ways in which study participants understand family, kinship and care in practice.

“Many described neighbors, paid caregivers and long-term friends as family or ‘like’ family,” said Kelsi Caywood, a U-M doctoral student in sociology. “People’s definitions of family vary, but often in patterned and explainable ways. For example, those who provided ongoing care and developed emotional closeness with an older adult were frequently seen as family.”

Based on six focus groups with 33 family and friend caregivers, the findings expose a significant disconnect. While current surveys narrowly define family, caregivers’ lived experiences show they often rely on broader, more fluid support networks.

“As one of our participants noted: ‘Families are messy, aren’t they?'” Patterson said. “Our findings show that older adults’ family dynamics greatly impact their care and caregivers. Memory loss could complicate these family histories, sometimes preventing older adults from recalling negative dynamics, including their own or others’ behavior. Even non-family caregivers experienced the influence of these dynamics on care provision.”

As caregiving networks become increasingly diverse and include nontraditional and nonbiological ties, the study urges researchers and policymakers to expand their definitions and measurements of “family” and caregiving responsibilities in surveys and support systems.

“Considering older adults with dementia often rely on a broad network, we must therefore ensure our communities support both those with dementia and their caregivers,” Patterson said. “We also found a striking lack of planning for later-life care. This suggests the public should prioritize early care planning and policymakers should back programs that facilitate it.”

Many people become caregivers unexpectedly, not through a preexisting care plan, researchers found, saying that few older adults had made such arrangements. The study also highlights that limited family availability has a significant impact on care.

“Not every older adult who needs care has family available to care for them, including those with very small families, strained relationships or no surviving kin,” Caywood said. “As a result, individual caregivers may find themselves shouldering higher care responsibilities than they expected, with few additional caregivers to fall back on.”

For Caywood, Patterson and colleagues, the study is one piece of a larger project aimed at developing survey items to better understand the caregiving experience within the context of family and social network dynamics, as well as within the context of the care recipient’s memory loss.

“We will continue to analyze information about who we expect to care for older adults with dementia in the context of changing families,” Patterson said.

“For instance, stepfamilies often function differently than biological families, and caregiving dynamics can change within the context of different impairments that the older adult experiences. Some of the upcoming projects include understanding whether we expect lifelong friends to help with later-life care needs, as well as caregivers’ feelings of choice.”

Friends, ex-spouses and neighbors are playing a growing role in caring for older adults with dementia—yet surveys and policies still act as if only spouses and children matter.

A new University of Michigan study reveals how outdated definitions of “family” leave caregivers invisible and systems unprepared for America’s aging crisis. The research is published in the American Journal of Alzheimer’s Disease & Other Dementias.

In 2022, 5.2 million family and other unpaid caregivers provided care to an adult aged 65 and older who was living with dementia.

“Caregiving for an older adult with dementia is a family and community affair,” said 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.

“We found that it was not just the ‘nuclear’ family members, such as partners or adult children, who were providing help to these older adults in our community, but it was also extended family and friends chipping in.”

Researchers say that caregiving policies and social norms often define family narrowly—focusing only on legal or biological ties. Such a definition fails to capture the broader, more flexible ways in which study participants understand family, kinship and care in practice.

“Many described neighbors, paid caregivers and long-term friends as family or ‘like’ family,” said Kelsi Caywood, a U-M doctoral student in sociology. “People’s definitions of family vary, but often in patterned and explainable ways. For example, those who provided ongoing care and developed emotional closeness with an older adult were frequently seen as family.”

Based on six focus groups with 33 family and friend caregivers, the findings expose a significant disconnect. While current surveys narrowly define family, caregivers’ lived experiences show they often rely on broader, more fluid support networks.

“As one of our participants noted: ‘Families are messy, aren’t they?'” Patterson said. “Our findings show that older adults’ family dynamics greatly impact their care and caregivers. Memory loss could complicate these family histories, sometimes preventing older adults from recalling negative dynamics, including their own or others’ behavior. Even non-family caregivers experienced the influence of these dynamics on care provision.”

As caregiving networks become increasingly diverse and include nontraditional and nonbiological ties, the study urges researchers and policymakers to expand their definitions and measurements of “family” and caregiving responsibilities in surveys and support systems.

“Considering older adults with dementia often rely on a broad network, we must therefore ensure our communities support both those with dementia and their caregivers,” Patterson said. “We also found a striking lack of planning for later-life care. This suggests the public should prioritize early care planning and policymakers should back programs that facilitate it.”

Many people become caregivers unexpectedly, not through a preexisting care plan, researchers found, saying that few older adults had made such arrangements. The study also highlights that limited family availability has a significant impact on care.

“Not every older adult who needs care has family available to care for them, including those with very small families, strained relationships or no surviving kin,” Caywood said. “As a result, individual caregivers may find themselves shouldering higher care responsibilities than they expected, with few additional caregivers to fall back on.”

For Caywood, Patterson and colleagues, the study is one piece of a larger project aimed at developing survey items to better understand the caregiving experience within the context of family and social network dynamics, as well as within the context of the care recipient’s memory loss.

“We will continue to analyze information about who we expect to care for older adults with dementia in the context of changing families,” Patterson said.

“For instance, stepfamilies often function differently than biological families, and caregiving dynamics can change within the context of different impairments that the older adult experiences. Some of the upcoming projects include understanding whether we expect lifelong friends to help with later-life care needs, as well as caregivers’ feelings of choice.”