Current knowledge and future directions about the disclosure of dementia: a systematic review of the first decade of the 21st century

Background: The disclosure of Alzheimer's disease presents a great challenge because it entails emotionally charged communication about a life-threatening, incurable, and stigmatized disease. Although a broad consensus has evolved regarding the potential benefits of early disclosure of the diagnosis, little is known about how these recommendations are actually implemented, and there is limited published research about the process issues of the disclosure.

Purpose: (1) To systematically obtain and evaluate the relevant literature on disclosing a diagnosis of dementia, with special attention to process issues, and (2) to summarize current research findings and draw conclusions for future research and clinical care in this area.

Methods: A systematic review of the literature on disclosure of dementia during the first decade of the 21st century was conducted.

Results: From 265 articles retrieved, 47 were included in the review. Although the studies published in the first years of the decade were concerned with assessing attitudes and preferences of those involved in the process of disclosing the diagnosis, those of the last years have focused more on communication and other process issues.

Conclusions: A conceptual development over time in the area is observed in which in the first years, thought processes begin as an ethical debate among clinicians and researchers about the topic of "truth telling" and dementia, continue as a search of the opinions of those involved in the process of disclosure about truth telling, and evolve (observed more recently) into an examination of how this truth telling is delivered.