Communicating a Diagnosis of Dementia

Abstract

Background: There has been a rise in dementia awareness, with policy changes leading to increased diagnosis rates. However, the stigma of dementia is likely to cause challenges in diagnostic communication. This is complicated by the effect of dementia on cognitive functioning. The aims of this study were to (1) identify how diagnoses of dementia are communicated, (2) identify how people with dementia respond to the diagnosis, and (3) explore doctors’ perspectives on dementia diagnosis delivery.

Methodology: A systematic literature review was conducted. Twenty doctors from 9 memory clinics across 4 NHS trusts participated. Eighty-one dementia diagnosis feedback meetings were video-recorded. Conversation analysis was used to identify patterns in diagnosis delivery. Four focus groups with the participating doctors were analysed using thematic analysis (inter-rater reliability 0.89).

Findings: The literature review highlighted the dilemma of communicating both sensitively and honestly with people with dementia, as well as challenges stemming from cognitive impairment. This was also evident in diagnostic communication. Prior to diagnosis doctors elicited patient orientation to the meeting purpose (“do you know why you’re here?) and perspective into symptoms (“how is your memory?”). The majority of patients displayed some confusion as to the meeting purpose and offered non-medicalised explanations for their symptoms. Doctors attempted to address this through repeated explication of test results and statements of the clinic purpose. Dementia was always explicitly named. Diagnoses were often delivered indirectly (“that is dementia”), a practice to manage patient resistance and negative responses. However, over 40% were delivered directly (“you have dementia”), especially when patients were more cognitively impaired. Doctors pursued non-minimal responses to diagnosis, apparently to obtain perspective before progressing to treatment. However, resistance was not always addressed and prognosis was often avoided. Doctors highlighted pressure to make diagnoses and an aim to emphasise “living well” rather than discussing prognosis.

Conclusion: The findings of this study highlighted the delicate balance between minimising likely resistance and distress and maximising understanding in the context of cognitive impairment. Instilling hope is evidently a priority for doctors. The diagnosis meeting is just one part of the journey of the person with dementia, and sufficient pre- and post-diagnosis support is integral.