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The meaning and experience of well-being in dementia for psychiatrists involved in diagnostic disclosure: a qualitative study

Published online by Cambridge University Press:  17 October 2016

A. Vince ,
C. Clarke  and
E. L. Wolverson
A. Vince*
Affiliation:
Department of Psychological Health and Well-being, University of Hull, Cottingham Road, Kingston-Upon-Hull, HU6 7RX, UK
C. Clarke
Affiliation:
Department of Psychological Health and Well-being, University of Hull, Cottingham Road, Kingston-Upon-Hull, HU6 7RX, UK
E. L. Wolverson
Affiliation:
Department of Psychological Health and Well-being, University of Hull, Cottingham Road, Kingston-Upon-Hull, HU6 7RX, UK
*
Correspondence should be addressed to: A. Vince, Department of Psychological Health and Well-being, University of Hull, Cottingham Road, Kingston-Upon-Hull, HU6 7RX, UK. Phone: +44 (0) 01482 464101. Email: [email protected].
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Abstract

Background:

Literature indicates that people's experiences of receiving a diagnosis of dementia can have a lasting impact on well-being. Psychiatrists frequently lead in communicating a diagnosis but little is known about the factors that could contribute to potential disparities between actual and best practice with regard to diagnostic disclosure. A clearer understanding of psychiatrists’ subjective experiences of disclosure is therefore needed to improve adherence to best practice guidelines and ensure that diagnostic disclosure facilitates living well with dementia.

Methods:

This study utilized qualitative methodology. Semi-structured interviews conducted with 11 psychiatrists were analyzed using Interpretive Phenomenological Analysis (IPA).

Results:

Three superordinate and nine subordinate themes emerged from the data analysis. These included the following: (i) “The levels of well-being” (Continuing with life, Keeping a sense of who they are, Acceptance of the self), (ii) “Living well is a process” (Disclosure can set the scene for well-being, Positive but realistic messages, Whose role it is to support well-being?), and (iii) Ideal care versus real care (Supporting well-being is not prioritized, There isn't time, The fragmentation of care).

Conclusions:

Findings indicate that psychiatrists frame well-being in dementia as a multi-faceted biopsychosocial construct but that certain nihilistic attitudes may affect how well-being is integrated into diagnostic communication. Such attitudes were linked with the perceived threat of dementia and limitations of post-diagnostic care. Behaviors used to manage the negative affect associated with ethical and clinical tensions triggered by attempts to facilitate well-being at the point of diagnosis, and their impact on adherence to best practice disclosure, are discussed.

Keywords

dementiaquality of life (QoL)qualitative researchAlzheimer's disease (AD)clinical assessment
Type
Research Article
Information
International Psychogeriatrics , Volume 29 , Issue 1 , January 2017 , pp. 93 - 104
Copyright
Copyright © International Psychogeriatric Association 2016 

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