Background and objectives: This review focuses on tools used in dementia diagnostic disclosure, particularly from family caregivers' perspectives. With dementia affecting millions globally, caregivers face challenges needing clear information and assistance. The review aims to: (a) identify tools used, (b) assess caregivers' preferences and challenges, and (c) highlight gaps to enhance communication strategies in dementia care.
Research design and methods: This systematic review, adhering to the PRISMA guidelines and registered with PROSPERO (CRD42024557806), synthesized evidence from nine studies on tools for dementia disclosure, with a focus on family caregiver perspectives. A comprehensive search of eight databases up to September 16, 2025, combined LLM-assisted screening and human review to identify qualitative, quantitative, and mixed-methods studies. Thematic synthesis analyzed caregiver preferences, tool effectiveness, and practice gaps.
Results: Across five countries (UK, Australia, USA, Denmark, Netherlands), written materials were universally valued (e.g., 80-95% satisfaction), with visual aids and brain images less common but effective when used. Caregivers preferred direct, comprehensive information (e.g., 98% sought details about behavior and psychological symptoms of dementia) delivered face-to-face, with written backups, although retention challenges (e.g., 61% recall) and inconsistent tool provision persisted. Gaps included limited visual aid adoption and poor post-diagnostic support, highlighting unmet needs.
Discussion and implications: This review highlights the importance of tools in supporting caregivers during dementia disclosure and calls for the development of a standardized Dementia Disclosure Evaluation Tool. Despite limitations (e.g., small sample sizes, urban bias), the findings lay the groundwork for improving caregiver support and guiding future research in diverse contexts.
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