It's all in the details: Physician variability in disclosing a dementia diagnosis

Abstract

This study explored physician opinion about how to disclose a dementia diagnosis. Qualitative analysis was used to examine group and individual variability regarding the philosophy about and pragmatics of disclosure in a sample of physicians experienced with dementia. While all clinicians believed they should disclose a dementia diagnosis, there was wide variability in what ‘disclosure’ meant to them. Even individual physicians said their disclosure strategy differs from patient to patient depending on the specifics of each case. Variability was seen in attitudes about when and to whom they disclose a dementia diagnosis, who should deliver the news, what language is used, and what topics are covered. Each physician seemed to apply an idiosyncratic and complex algorithm to make decisions about these process features of the conversation. They weigh shifting perceptions of the utility of disclosure in conjunction with a desire to facilitate care planning, an awareness of family dynamics, a responsibility to acknowledge preferences, and an obligation to communicate clear information, all within the time constraints of a medical consultation. Further empirical research is needed to establish best practices that promote psychological adjustment and successful disease management in patients and caregivers who receive a dementia diagnosis.

Acknowledgements

We thank Leona Middleton, Mike Packer, Christina Banister, and Sara Cherney for their assistance transcribing and coding interviews. John Morris, Director of the Washington University Alzheimer's Disease Research Center, originally conceived of investigating diagnostic disclosure and has provided generous support throughout this and related projects. Chengie Xiong helped to design the larger study of which these interviews were part. Mary Coats helped to organize technical aspects of the project, including coordinating interviews. We also thank the clinicians of the Washington University Alzheimer's Disease Research Center who shared their thoughts and experiences. Support for this research came in part from NIA Grants #P50 AG05681 and #PO1 AG03991, and a grant to Brian Carpenter from the University of Missouri Alzheimer's Disease and Related Disorders Research Program.