Disclosing a Dementia Diagnosis: A Review of Opinion and Practice, and a Proposed Research Agenda

PURPOSE: The ethical and practical issues in disclosing a dementia diagnosis remain subjects of some debate. In this review of the literature we document previous opinion and practice in the area of diagnostic disclosure. DESIGN AND METHODS: We identified sources for this review with a MEDLINE and PsycINFO database search, followed by collection of additional articles from reference lists. RESULTS: Across sources we were able to identify a broad list of arguments both for and against diagnostic disclosure. We briefly discuss some of the ethical principles that undergird those reasons. IMPLICATIONS: Practice guidelines and professional opinion regarding disclosure appear to depart from the actual experience reported by clinicians, patients, and family members. At a more detailed level, process issues in disclosure, such as who is told, how and what they are told, and the impact of disclosure, are poorly understood. Sensitivity to individual differences may promote an optimal approach to disclosure. Research in this area is sparse and often contradictory, and throughout the review we propose research questions that, when answered, could clarify issues in disclosure that are essential to sound dementia care.