'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 four core areas: 1) Dementia-specific education/training; 2) Competent mental health support; 3) 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.