Tools for dementia disclosure: a systematic review of family caregivers’ perspectives and experiences

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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 9 studies on tools for dementia disclosure, with a focus on family caregiver perspectives. A comprehensive search of 8 databases up to September 16, 2025, combined large language model-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 5 countries (United Kingdom, Australia, United States, Denmark, the 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 postdiagnostic 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.