An Interpretative Phenomenological Analysis of the Experiences of Young Adult Grandchild Caregivers of Grandparents with Dementia

Abstract

In 2023, an estimated 11.5 million individuals provided approximately 18.4 billion hours or unpaid care to family members with Alzheimer's disease or related dementias. While the burdens of dementia caregiving have been well-documented, less is known about the experiences of young adults who serve as caregivers to their grandparents. These caregivers, aged 18 to 29 years, are in the developmental stage of emerging adulthood, a period characterized by identity exploration, pursuit of autonomy, and life transitions—factors often at odds with the demands of caregiving. This study examined the uncommon caregiving dynamic of grandchildren supporting grandparents, contrasting the more typical pattern of grandparent-to-grandchild care. This qualitative study employed Interpretative Phenomenological Analysis (IPA) to explore how young adult grandchildren made sense of their caregiving roles and how their caregiving experiences intersected with the developmental tasks of emerging adulthood. Eight young adults, who were actively providing or had previously provided care for a grandparent with dementia, participated in semi-structured interviews. Participants described how they navigated identity tensions between their desire for autonomy and the dependency required by the caregiving role. They expressed a perceived loss of typical young adult experiences, often shaped by social isolation and the unique challenges of caregiving. Despite these difficulties, participants found opportunities for personal growth through meaning-making and by integrating caregiving into their future-oriented identities. These findings provide a nuanced understanding of the caregiving experience within this population, highlighting the complexity of assuming an off-time caregiving role during the sensitive developmental period of emerging adulthood. Implications for future research and practice are discussed.