Dementia Family Caregiving in Rural Appalachia: A Sociocultural Model of Care Decisions and Service Use.

Abstract

Examinations of cultural variations in caregiving experiences and practices tend to focus on racially and ethnically diverse family caregivers. We extended this research by exploring the role of place-based cultural constructs on care decisions of family caregivers for persons living with dementia in rural Appalachia whose experiences and backgrounds dwell outside the lines of dominant culture. Guided by our sociocultural conceptual model of service use and a descriptive qualitative study design, we conducted in-depth interviews with 30 caregivers for persons living with dementia to understand how predisposing and enabling factors influence caregiving decisions, including the use of services to care for persons living with dementia. Three predisposing factors reflecting the culture of rural Appalachian counties in Virginia (reasons for becoming a caregiver, previous caregiving experience, and deference to the person living with dementia) shaped decisions about caregiving responsibilities and service use. Three place-based enabling factors (a personal sense of belonging, knowledge of services, and family support for service use) played an important role in facilitating access to services. Findings revealed subtle variation across caregivers in this study and in comparison, to caregivers' experiences more generally. We interpret these variations in light of culturally influenced attitudes, family norms, and sources of information about formal services. Place-based cultural experience influenced dementia family caregivers' behaviors and choices regarding formal service use, suggesting that investigators should pay more attention to cultural influences in future caregiving research.