Many Niece and Nephew Dementia Caregivers Unprepared When They Take On Role, Study Reveals

A recent research study conducted by Virginia Tech provides new insights into the experiences of nieces and nephews who assume caregiving roles for relatives with dementia. The study highlights that a significant majority of these extended family caregivers unexpectedly find themselves in these roles without prior planning or preparation. This spontaneous involvement often results from deeply rooted family relationships, where caregivers express their actions as a form of gratitude and love for their relatives.

The research, published in The Gerontologist, surveyed 25 caregivers aged 38 to 67 across several states, including Virginia, Kentucky, and North Carolina. Many of these caregivers live with or visit their relatives with dementia multiple times a week. Data was gathered through telephone interviews conducted over four years, exploring their paths to caregiving, the responsibilities they handle, and how caregiving impacts their well-being.

According to Tina Savla, a professor of human development and family science and co-author of the study, these caregivers often do not foresee themselves in this role but undertake it out of lifelong bonds and emotional ties. "Many see it as paying back the love shown to them in childhood," she notes. Despite the emotional motivation, the responsibilities are substantial, including managing household tasks, transportation, finances, medications, and coordinating healthcare services.

The study emphasizes that caregiving for relatives with dementia involves complex dynamics rooted in past relationships and family systems. Tasks encompass a broad array of activities aimed at maintaining the well-being of the person with dementia, often while managing their own personal and professional lives.

This research emphasizes the importance of understanding extended family caregiving roles in the context of an aging population with increasing dementia diagnoses. Recognizing the diverse circumstances and relationships involved can help develop tailored resources and support systems to better assist these caregivers.

Looking ahead, researchers plan to expand their study to include other extended family members such as adult grandchildren and siblings, to gain a deeper understanding of the caregiving landscape. Ultimately, the findings aim to inform policies and interventions that recognize the vital contributions of extended family caregivers and improve their quality of life while supporting those living with dementia.

Source: https://medicalxpress.com/news/2025-06-niece-nephew-dementia-caregivers-role.html