Unmet Needs and Factors Impacting Home- and Community-Based Service Use Among Rural Appalachian Caregivers of People With Alzheimer’s and Dementia

Abstract

Family caregivers of persons with Alzheimer’s disease and related dementias (ADRD) living in rural areas face significant health and healthcare challenges. Limited research, however, has explored factors shaping their use of home- and community-based services (HCBS). This study identifies unmet needs among caregivers of people with ADRD in rural Western North Carolina and highlights contextual factors that facilitate HCBS use. Nineteen qualitative interviews were conducted with 21 family caregivers and 1 person with ADRD between 2021 and 2022. Thematic analyses revealed unmet needs among caregivers for information, service navigation, and caregiving support. HCBS use was shaped by multiple factors including illness needs, cultural beliefs, preferences for home-based care, and place-based resources. These findings suggest that culturally tailored HCBS are needed to support people with ADRD and their caregivers in rural Appalachian communities, especially those which facilitate access to paid caregiving, clearly communicate program eligibility requirements, and emphasize service availability.