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Daring to tell: the importance of telling others about a diagnosis of dementia

Published online by Cambridge University Press:  25 February 2014

DOT WEAKS ,
HEATHER WILKINSON  and
JOHN McLEOD
DOT WEAKS*
Affiliation:
School of Health in Social Science, University of Edinburgh, UK.
HEATHER WILKINSON
Affiliation:
School of Health in Social Science, University of Edinburgh, UK.
JOHN McLEOD
Affiliation:
School of Social and Health Sciences, University of Abertay Dundee, UK.
*
Address for correspondence: Dot Weaks OBE, Visiting Research Fellow, c/o Heather Wilkinson, School of Health in Social Science, University of Edinburgh, Doorway 6, Medical Quad, Teviot Place, Edinburgh EH8 9AG, UK. E-mail: dotweaks@gmail.com
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Abstract

Learning to live with a diagnosis of dementia is a complex process. Being able to talk about the diagnosis to others represents a major challenge for some people with dementia. This study explores the experiences of people with dementia, and members of their families, around the task of informing others during the six months immediately following their diagnosis of dementia. Five people with dementia living in the community, and their immediate family members, were recruited into an ethnographic study. Data were collected through recorded interviews and participant observation, and were analysed through a grounded theory method within a continuing iterative process. Findings suggest that participants recognised the need to tell others about their diagnosis but these conversations were difficult to initiate and manage, and hindered the processing of emotions. Findings are discussed in relation to implications for practice.

Keywords

communitycounsellingdementiadiagnosisearly stageemotionethnographygrounded theoryidentitynarrativequalitative researchrelationshipsself
Type
Articles
Information
Ageing & Society , Volume 35 , Issue 4 , April 2015 , pp. 765 - 784
Copyright
Copyright © Cambridge University Press 2014 

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