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Patient and companion concerns when receiving a dementia diagnosis: an observational study of dementia diagnosis feedback meetings

Xanthopoulou, P; Dooley, J; Meo, I; Bass, N; Mccabe, R; (2019) Patient and companion concerns when receiving a dementia diagnosis: an observational study of dementia diagnosis feedback meetings. Ageing and Society , 39 (8) pp. 1782-1805. 10.1017/S0144686X18000247. Green open access

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Abstract

Receiving a diagnosis of dementia is a life-changing event and can cause strong emotional reactions. The aim of this study was to examine patient and companion concerns expressed during dementia diagnosis feedback meetings. Sixty consultations between 19 health-care professionals (HCPs), 60 patients and 59 companions were video-recorded and transcribed. Concerns were identified from the transcripts and were (a) content analysed, (b) coded as elicited by the HCP or volunteered by the patient or companion, and (c) coded according to whether the HCP encouraged or discouraged elaboration of the concern. A total of 249 concerns were identified (average four concerns per consultation). There were three areas of findings: (a) patients and companions were concerned about the symptoms of dementia and receiving a diagnosis; other concerns related to patients’ mental and physical health, and prognosis, (b) HCPs elicited more patient than companion concerns and mostly elicited concerns aligned with the agenda of diagnosis feedback, and (c) HCPs were more likely to encourage elaboration when they elicited the concern. Nearly 40 per cent of concerns were discouraged by the HPC changing topic, with concerns about prognosis most commonly discouraged. The findings suggest that there were a wide variety of concerns at dementia diagnosis, many extending beyond the experience of dementia symptoms. HCP avoidance of concerns about prognosis demonstrated delicacy in discussing the deteriorating course of dementia.

Type: Article
Title: Patient and companion concerns when receiving a dementia diagnosis: an observational study of dementia diagnosis feedback meetings
Open access status: An open access version is available from UCL Discovery
DOI: 10.1017/S0144686X18000247
Publisher version: https://doi.org/10.1017/S0144686X18000247
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: dementia, concern, communication, medical consultation
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
URI: https://discovery.ucl.ac.uk/id/eprint/10079386
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