Challenges in disclosing and receiving a diagnosis of dementia: a systematic review of practice from the perspectives of people with dementia, carers, and healthcare professionals

Abstract

Background: Disclosing a diagnosis of dementia is a key process involving people with dementia, carers, and healthcare professionals (HCPs) that can facilitate access to treatment and support. Receiving a diagnosis of dementia may represent a change in identity and loss of a planned-for future, resulting in an emotional impact for both people with dementia and carers. Delivering the diagnosis of dementia can be difficult and draining for HCPs.

Methods: We conducted a systematic review that included studies which explored the experience of giving or receiving a diagnosis of dementia from the perspectives of people with dementia, carers, or HCPs. All study designs were eligible except for previous literature reviews. Findings were analyzed thematically and grouped into categories and then synthesized into a narrative review. The quality of all included studies was assessed.

Results: Fifty-two studies were included in this review. Findings indicated that receiving a diagnosis is generally a negative process for people with dementia, carers, and HCPs and leaves carers in particular feeling uncertain over the prognosis and future of the person they care for. Disclosing a diagnosis of dementia is a difficult and complex process, for which formal training and guidance is lacking. Carers in particular would welcome more opportunity for realistic and hopeful discussions of the implications of receiving a diagnosis of dementia.

Conclusions: Changes in some aspects of disclosure, such as providing a truthful diagnosis to the person with dementia, have occurred over the last decade. A process approach involving pre-diagnostic counseling and follow-up appointments could enable discussions regarding prognosis and the future, create opportunities to clarify the diagnosis, and reduce emotional burden on HCPs. There is a need for more objective evidence that considers the perspectives of all individuals involved.

Keywords: carers; dementia; diagnosis; disclosure; healthcare professionals.