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

《诊断与告别》:从多角度探讨痴呆症家庭照护者对正规服务的使用

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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.

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