“How do You Take that Much Time for One Person’s Life?” Experiences of Dementia Caregivers Who are Not Immediate Family

Abstract

One in three people with Alzheimer’s or other dementias lives alone, without a spouse/partner or nearby children (i.e., is aging solo), yet most dementia caregiving research has focused solely on spouses or children. This study examined the experiences of friends, neighbors, siblings, and others providing unpaid care for someone with dementia. We conducted semi-structured interviews with 14 caregivers (100% female; age 54–85, mean 71; 93% white, 7% black; 29% friend, 29% sibling or in-law, 21% neighbor, 21% church congregant). Participants balanced three priorities: the person living with dementia’s quality of life, the person’s safety and well-being, and the caregiver’s resources. Caregivers described tensions when these priorities conflicted, such as the person with dementia’s goal to live alone versus risks to their physical safety. These findings and future research can inform policies and programs to support non-family dementia caregiving.