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The Influence of Stigma on Disclosure Decision-Making in People Affected by Dementia

Bhatt, Jemini; (2020) The Influence of Stigma on Disclosure Decision-Making in People Affected by Dementia. Doctoral thesis (Ph.D), UCL (University College London). Green open access

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Abstract

Background Disclosure decision-making refers to the way in which people affected by dementia choose to conceal or reveal their diagnostic status to others. Dementia is a stigmatised condition; the presence of stigma may generate reluctance to disclose a dementia diagnosis for fear of the consequences. Aims The aim of this thesis is to understand the influence of stigma on disclosure decision-making in dementia, to (1) establish the motivations for diagnostic secrecy and the barriers to disclosure in dementia, utilising literature on stigma, stigma reduction and decision-making; (2) test measures of stigma with people affected by dementia; (3) develop and test an intervention to support disclosure decision-making for people affected by dementia. Methods Robust methodology was employed to gather an initial understanding of the influence of stigma on disclosure decision-making through one conceptual and one systematic review, followed by adaptation and statistical analysis of psychometric instruments quantifying stigma in people affected by dementia. Intervention development and evaluation was conducted using Medical Research Council guidelines to create the first support group focussed on disclosure decision-making in dementia. Public and patient involvement was used throughout, ranging from the adaptation of psychometric instruments to intervention production being informed by coproduction principles. Results Stigma exacerbates the existing complexities in the nature of decision-making in dementia. Stigma measures for people living with dementia (N = 40) and carers (N = 70) were acceptable and suitable with adequate psychometric properties with some exceptions. Intervention development procedures resulted in a novel, 3-session, group based, dyadic (pairs of people living with dementia and their carers) approach heavily endorsed by stakeholders. Preliminary evaluation of the “who to tell, how and when?” intervention (N = 14; 7 dyads) is presented along with recommendations for further iterations. Conclusion Stigma negatively influences disclosure decision-making in dementia. Outputs of this thesis, with further testing, can help change this.

Type: Thesis (Doctoral)
Qualification: Ph.D
Title: The Influence of Stigma on Disclosure Decision-Making in People Affected by Dementia
Event: UCL (University College London)
Open access status: An open access version is available from UCL Discovery
Language: English
Additional information: Copyright © The Author 2020. Original content in this thesis is licensed under the terms of the Creative Commons Attribution 4.0 International (CC BY 4.0) Licence (https://creativecommons.org/licenses/by/4.0/). Any third-party copyright material present remains the property of its respective owner(s) and is licensed under its existing terms. Access may initially be restricted at the author’s request.
UCL classification: UCL
UCL > Provost and Vice Provost Offices
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 > Div of Psychology and Lang Sciences
URI: https://discovery.ucl.ac.uk/id/eprint/10113352
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