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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. ORCID: 0000-0003-2041-7383 (2018). 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. doi: 10.1017/s0144686x18000247


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.

Publication Type: Article
Additional Information: This article has been published in a revised form in Ageing and Society This version is free to view and download for private research and study only. Not for re-distribution or re-use. © Cambridge University Press 2018.
Subjects: R Medicine > RC Internal medicine
R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry
R Medicine > RT Nursing
Departments: School of Health & Psychological Sciences > Healthcare Services Research & Management
SWORD Depositor:
[thumbnail of Revised manuscript_Concerns when receiving a dementia diagnosis (003).pdf]
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