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Comparing the stigma experiences and comfort with disclosure in Dutch and English populations of people living with dementia

Bhatt, Jem; Kohl, Gianna; Scior, Katrina; Charlesworth, Georgina; Muller, Majon; Dröes, Rose-Marie; (2023) Comparing the stigma experiences and comfort with disclosure in Dutch and English populations of people living with dementia. Dementia 10.1177/14713012231188503. (In press). Green open access

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Abstract

OBJECTIVES: People living with dementia can feel hesitant disclosing their diagnosis to social networks, partly due to stigma. Little attention has been paid to the measurement of disclosure decisions and stigma, and few standardised stigma tools have been validated in languages other than English. We investigated the psychometric properties of Dutch translations of three stigma measures, and explored the stigma experiences of Dutch and English people living with dementia as well as patterns and predictors of comfort with disclosure. METHODS: Community-dwelling adults living with dementia in the Netherlands (n = 40) and England (n = 40) completed either the English versions or the Dutch translations of the Comfort with Disclosure scale and three stigma measures (Stigma Impact, Stigma Stress, and Secrecy Scale). We established the psychometric properties of the stigma measures and conducted correlation and regression analyses. RESULTS: Internal consistency was good to excellent for all measures in the Dutch sample. Small but significant differences were found between the Dutch and English samples on the total score of the Stigma Impact Scale and its subscale social isolation. Age was negatively associated with comfort disclosing to family, and desire for secrecy was negatively associated with comfort disclosing to both family and friends. CONCLUSIONS: The psychometric properties of the Dutch scales were satisfactory. Many people living with dementia would feel comfortable disclosing their diagnosis to family and friends, but stigma experiences can greatly affect this decision. Cross-cultural differences in stigma experiences in persons with dementia require further investigation.

Type: Article
Title: Comparing the stigma experiences and comfort with disclosure in Dutch and English populations of people living with dementia
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1177/14713012231188503
Publisher version: https://doi.org/10.1177/14713012231188503
Language: English
Additional information: This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
Keywords: Dementia, disclosure, psychometrics, secrecy, stigma
UCL classification: UCL
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
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Clinical, Edu and Hlth Psychology
URI: https://discovery-pp.ucl.ac.uk/id/eprint/10174196
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