"Diagnose & Adios": Multi-Perspective Insights on Formal Service Use in Dementia Family Caregivers.

Abstract

Background and objectives: Dementia family caregiving is a complex role that becomes increasingly intense and demanding over time. The utilization of home and community-based services (HCBS) can provide knowledge and skills to foster preparedness, which may protect against adverse caregiving outcomes; yet actual uptake of services remains low. The current study aims to gather multi-perspective insights underlying the disconnect between caregivers' need for-versus utilization of-HCBS using Pearlin et al.'s (1990) stress process model as a guiding theoretical framework.

Research design and methods: Five focus groups of 4-8 participants each were conducted with dementia family caregivers (n = 13) and subject matter experts (n = 17). A deductive-inductive thematic approach was used for data analysis.

Results: Three overarching concepts were identified: "Pathways to Preparedness'", 'Multi-Level Barriers', and 'Bridging the Gap.' Findings reflected caregivers" need for support in 4 core areas: (a) dementia-specific education/training; (b) competent mental health support; (c) financial/legal navigation, and (4) emergency readiness. Results revealed cross-dimensional barriers across individual-, provider-, and systemic-contexts impeding HCBS access and utilization. Personalized caregiving navigation and technology were deemed potential solutions to facilitate clearer clinical pathways between unmet needs and relevant services.

Discussion and implications: Results underscore the complexity of the HCBS system in the United States and highlight the multidimensional barriers disrupting the pipeline connecting caregivers to HCBS. Findings can inform web-based behavioral interventions aiming to enhance family caregivers' knowledge of, access to, and utilization of formal services in community settings.