Niece and nephew dementia caregivers: Family relationships and care dynamics

Abstract

Background and objectives: The dementia caregiving literature has largely ignored extended family caregivers who play a vital role in sustaining community living for older adults living with dementia. Guided by a life course perspective and grounded in a stress-coping framework, we focus attention on the caregiving experiences of nieces/nephews who have assumed the role of primary caregiver for their aunts/uncles, a topic that has received limited attention in the research literature. Research design and methods: Employing a mixed-methods design, we conducted interviews with 20 niece and 5 nephew primary caregivers (Mage = 55 yrs; R = 38-67). Interviews were analyzed following principles of the life history approach to understand how family history and dynamics shaped care responsibilities and practices; correlation analyses assessed associations with caregiver outcomes. Results: Interactions in childhood provided the foundation for establishing relationships with aunts/uncles. Two-thirds of the nieces/nephews never expected to be their relative's caregiver, but rather either gradually "fell into it" or abruptly assumed the role because of "family circumstances." Caregivers relied primarily on their own family for help with care tasks; aunts'/uncles' family members and paid services provided targeted assistance. Nieces/nephews who relied on family support to assist with care experienced more caregiver burden and faced greater family strain. Discussion and implications: The nieces/nephews embraced their caregiver roles and were committed to ensuring their aunts/uncles received the care they needed. Findings contribute new knowledge about the complexity of extended family relationships and realities of dementia care amidst the transformations occurring in family life today.