Expanding Definitions of Care: Nontraditional Caregivers Take Center Stage in Dementia Support

A recent study by the University of Michigan highlights a growing shift in dementia caregiving, revealing that friends, neighbors, and long-term community members are increasingly stepping into roles traditionally assigned to spouses and children. Despite this, current policies and surveys often limit their understanding of 'family,' overlooking these vital caregiving networks.

Published in the American Journal of Alzheimer's Disease & Other Dementias, the research underscores how outdated notions of family exclude many who contribute significantly to the care of older adults with dementia. In 2022, over 5.2 million unpaid caregivers provided support to seniors living with dementia, many of whom are not related by blood or marriage.

Sarah Patterson, a sociologist and research assistant at the University of Michigan, emphasizes that caregiving is a communal effort extending beyond the conventional nuclear family. "We found that it's not just partners and adult children aiding older adults, but also extended family and friends who see themselves as part of the caregiving network," she explains.

The study involved focus groups with 33 caregivers, revealing that many define 'family' broadly, often including neighbors, paid caregivers, and enduring friends based on ongoing emotional bonds and caregiving roles. However, current survey methods narrowly focus on biological ties, missing these vital social connections.

Caregivers frequently reported that family dynamics can be complex and sometimes strained, influencing caregiving experiences. Memory loss in seniors can obscure past conflicts, leading caregivers—whether family or nontraditional—to develop supportive, familial bonds nonetheless.

The findings call for a reevaluation of caregiving definitions in policies and research to recognize and support diverse networks. The study stresses the importance of early planning for caregiving and expanding community resources, especially as many caregivers are thrust into roles unexpectedly and may have limited options when formal support systems overlook their contributions.

Kelsi Caywood, a doctoral student involved in the research, highlights concerns that limited family presence—due to strained or absent relationships—places additional responsibilities on individual caregivers without sufficient support. "Many older adults lack available family caregivers, which can lead to higher burdens on individual helpers," she notes.

As caregiving roles become more diverse, ongoing research aims to develop better tools to understand these social dynamics, considering not only family but also longtime friends and community members involved in care.

Recognizing the full extent of care networks is crucial for developing inclusive policies and support systems that adapt to changing familial structures and societal norms. This approach ensures that all caregivers, regardless of their relationship to the care recipient, receive appropriate recognition and assistance.

source: [https://medicalxpress.com/news/2025-07-kin-urges-rethink-nontraditional-caregivers.html]