Family Caregivers in Rural Appalachia Caring for Older Relatives With Dementia: Predictors of Service Use

Abstract

Background and Objectives Residents of rural Appalachia tend to experience poorer health and greater economic distress than rural dwellers elsewhere in the U.S. Although family is the first line of support for older adults needing care, it is unclear whether dementia caregivers in Appalachia assume these care responsibilities because of strong informal networks that support them in their caregiving role, under-resourced formal services for persons with dementia, or culture-based reluctance to accept help from outsiders. This research examines how rural residents of Appalachia manage the care of relatives with dementia. Research Design and Methods The study was grounded in the Andersen Behavioral Model, supplemented with culturally-relevant variables. Family caregivers from rural Appalachian counties in Virginia caring for community-dwelling relatives with dementia participated in a structured phone interview (N = 163). Generalized structural equation models were estimated, with predisposing, need, and enabling variables as predictors. Use of support services (e.g., meal delivery) and personal services (e.g., home health nurse) by family caregivers to care for the person with dementia were the dependent variables, and caregiver’s rural community identity and attitude toward services were moderators. Results Approximately half the sample utilized at least one support service and one personal service. Predisposing and need factors predicted the use of support services, whereas predisposing, need, and enabling factors predicted personal services. Caregivers who strongly identified with their cultural roots were less likely to use personal services unless they held a generally positive view of formal services. Discussion and Implications Although the extent of needs and the caregiver's economic situation were essential influences on formal service utilization, the main drivers were the caregiver's identification with rural Appalachian culture and attitude toward services. Findings point to within-group heterogeneity that requires differential approaches to delivery of community-based services accounting for varying attitudes, preferences, and family resources.

Barriers to Service Use Among Dementia Family Caregivers in Rural Appalachia: Implications for Reducing Caregiver Overload

“…Despite the contributions of the prior service utilization studies, most research on barriers and facilitators of service use is limited to an examination of a single service (e.g., respite services; Lee et al, 2022 ), a variety of services individually (e.g., Casado et al, 2011 ), or the number of services utilized (e.g., light vs. multiple service users; Hong et al, 2011 ). In addition, there is the lack of focus on dementia care in Appalachia where barriers to and facilitators of service use may vary due to a variety of cultural and contextual reasons (Roberto et al, 2022 ; Savla et al, 2022 ). A more comprehensive understanding of factors that influence utilization of HCBS and their direct benefits for family caregivers and PLwD residing in rural Appalachian communities is warranted.…”

Extended Family Caregivers for Persons Living With Dementia

“…In Study 1, we analyzed data from the NHATS’s NSOC (Spillman et al, 2014) to describe the care experiences of 107 extended family dementia caregivers. In Study 2, we used case study tools (Yin, 2014) to explore in more depth the experiences of and strategies used by 10 extended family dementia caregivers (Savla et al, 2022). Each study contributed unique (as well as similar) data that provided insight into extended family members experiences as caregivers.…”

“…Caregivers responded to standard demographic questions about themselves and the person living with dementia. Functional abilities of the person living with dementia were based on the caregivers’ assessment of difficulties their relative had with eight instrumental ADL (IADL) and six personal ADL, respectively (see Savla et al, 2022).…”

“…Sample. As part of the FACES-AD multistage, mixed-methods study, we conducted structured telephone interviews and seven daily diaries with 124 primary family caregivers of community-dwelling (i.e., not living in a care facility) persons living with dementia in the rural Appalachia region of Virginia (for study details/approvals, see Savla et al, 2022). The overarching aim of the research was to learn from families in rural Appalachia about approaches to caregiving and influences on formal service use.…”

Dual Caregivers of Persons living with Dementia: The Added Stress of COVID-19 Pandemic

“…The original sample included 124 family caregivers caring for PwD ( Savla et al, 2022 ). We focused on the 46 caregivers who provided care for a PwD and also another relative: 27 MOA caregivers and 19 MG caregivers (see Table 1 for demographic characteristics).…”