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

Published online by Cambridge University Press:  16 April 2018

PENNY XANTHOPOULOU Open the ORCID record for PENNY XANTHOPOULOU [Opens in a new window] ,
JEMIMA DOOLEY ,
ILARIA MEO ,
NICK BASS  and
ROSE MCCABE
PENNY XANTHOPOULOU*
Affiliation:
Medical School, University of Exeter, UK.
JEMIMA DOOLEY
Affiliation:
Medical School, University of Exeter, UK.
ILARIA MEO
Affiliation:
Faculty of Medicine and Psychology, Sapienza University, Rome, Italy.
NICK BASS
Affiliation:
Division of Psychiatry, University College London, UK.
ROSE MCCABE
Affiliation:
Medical School, University of Exeter, UK.
*
Address for correspondence: Penny Xanthopoulou, University of Exeter Medical School, College House, St Luke's Campus, Exeter EX1 2LU, UK E-mail: [email protected]
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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.

Keywords

dementiaconcerncommunicationmedical consultation
Type
Article
Information
Ageing & Society , Volume 39 , Issue 8 , August 2019 , pp. 1782 - 1805
Copyright
Copyright © Cambridge University Press 2018 

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