New study shines a light on nieces and nephews caring for relatives with dementia

A Virginia Tech study provides new insights about nieces and nephews taking care of aging relatives living with dementia. 

Published in The Gerontologist, the initial findings from the study provide the first focused examination of niece and nephew dementia caregivers. The study details that two-thirds of the extended family caregivers studied never expected to be in that role, but rather abruptly fell into it.

“That spontaneity shows extraordinary love and empathy while masking a lot of real stress,” said Tina Savla, professor of human development and family science and co-author of the study. “They carry all of the responsibilities associated with primary caregiving while also managing their own households, children, and work.”

The study also revealed that the nieces and nephews often had lifelong relationships with their relatives, shaped by generational ties that positioned them as potential caregivers.

“Many participants told us, 'I’m just paying back the love my aunt showed me when I was a kid,’” said Savla, who is also a core faculty member of the Center for Gerontology. “I think that when care comes from heartfelt gratitude rather than sheer duty or obligation, then caregivers keep going — even when resources are thin and pressures and stressors are high.”

Savla and Karen Roberto, founding executive director of Virginia Tech’s Institute for Society, Culture, and Environment, are leading the ongoing study, which includes 20 nieces and five nephews, through the CareEx project, funded by the National Institutes of Health. Located throughout Virginia, Kentucky, Maryland, North Carolina, Tennessee, and West Virginia, the caregivers studied were between 38 to 67 years old and either lived with their relatives or saw them at least three times a week. 

Data was collected through telephone interviews from 2021-25. The conversations explored the family members’ paths to dementia caregiving, how they manage their care responsibilities, and the effects caregiving has on their well-being and that of the person living with dementia. 

The researchers believe the study comes at a critical time in America, as both the general population’s age and dementia diagnosis rate are increasing. Despite the growth, most family caregiving studies only target traditional caregivers, such as spouses and adult children.

Similar to traditional caregivers, the study found that providing care for the uncles and aunts generally included several responsibilities, such as helping with household activities, providing transportation, managing finances and medications, and arranging health care and other services.

To better understand this specific caregiving dynamic, Roberto and Savla identified four overarching themes: relationship foundations, pathways to caregiving, care systems, and trials and tribulations. These four themes revealed the complexity of connection between past relationships, caregiving responsibilities, support systems, and caregiving challenges that the nieces and nephews faced.

By studying the evolving family structures and circumstances of extended dementia caregivers, professionals and family members will have access to tailored resources, increasing support for individuals providing care while also helping them navigate any challenges or conflict related to their role.

Moving forward, Roberto and Savla plan to continue interviewing niece and nephew caregivers as well as other extended caregivers, such as adult grandchildren and siblings, to expand their data to include even more diverse caregiver perspectives. 

“Understanding the contributions of extended family caregivers provides a more complete picture of the family caregiving ecosystem” said Roberto, who is also a core faculty member of the Center for Gerontology. “Learning about their experiences will help identify unmet care needs and guide interventions to help sustain and improve caregiver well-being, which in turn benefits the person living with dementia and society at-large.”

If you or a family member are currently an extended family caregiver for a grandparent, uncle, aunt, sibling, or stepfamily member living with dementia and are interested in sharing your story with the CareEx team, please visit careex.isce.vt.edu, call 540-231-9250, email careex@vt.edu, or complete the initial inquiry form at https://is.gd/careex.

Original study DOI:10.1093/geront/gnaf154