Many Niece and Nephew Caregivers of Dementia Patients Unprepared for Role, Study Reveals

A recent study from Virginia Tech has shed light on the experiences of niece and nephew caregivers for relatives suffering from dementia. The research, published in The Gerontologist, highlights that a significant majority of these caregivers--approximately two-thirds--did not anticipate stepping into caregiving roles.

According to the findings, many of these caregivers found themselves in unexpected situations, often stepping up to provide care without prior planning. This trend underscores a profound sense of compassion and empathy, yet it also obscures the substantial stress associated with such responsibilities. The study's co-author emphasized that caregivers are often tasked with managing their own households, jobs, and children while serving as primary caregivers for their relatives.

The research delved into the deep-rooted relationships between caregivers and their relatives, revealing that many had longstanding connections that influenced their caregiving decisions. Many caregivers expressed sentiments of repaying the love and support they received in childhood, suggesting that emotional ties can motivate caregiving beyond mere obligation.

The ongoing study, conducted by researchers Tina Savla and Karen Roberto, focuses on 25 caregivers--20 nieces and five nephews--across several states, including Virginia, Kentucky, and North Carolina. Participants were aged between 38 and 67 and had either lived with their relatives or visited them at least three times a week.

The data was collected through telephone interviews conducted from 2021 to 2025, exploring the caregivers' journeys into dementia caregiving, their management of caregiving duties, and the impact of these responsibilities on their personal well-being and that of the individuals they care for.

As the population ages and dementia diagnoses increase, the need for comprehensive research on caregiving dynamics is becoming increasingly critical. The study highlights that most existing research tends to focus on traditional caregivers, such as spouses and adult children, leaving a gap in understanding the roles of extended family members.

Similar to traditional caregivers, nieces and nephews often manage a range of responsibilities, including assisting with household chores, providing transportation, and overseeing health care arrangements. The researchers identified four central themes in their findings: relationship foundations, pathways to caregiving, care systems, and the challenges faced by caregivers.

These themes elucidate the intricate connections between prior relationships, caregiving duties, support networks, and the obstacles encountered by caregivers. This research aims to provide tailored resources and increased support for those in caregiving roles, helping them navigate the complexities of their responsibilities.

Looking ahead, the study's authors plan to expand their research to include other extended family caregivers, such as adult grandchildren and siblings, to capture a broader spectrum of caregiving experiences. Understanding the contributions of these caregivers will enhance the overall understanding of the family caregiving landscape, enabling the identification of unmet needs and guiding interventions that promote caregiver well-being.