TY - JOUR
T1 - Comparing the stigma experiences and comfort with disclosure in Dutch and English populations of people living with dementia
AU - Bhatt, Jem
AU - Kohl, Gianna
AU - Scior, Katrina
AU - Charlesworth, Georgina
AU - Muller, Majon
AU - Dröes, Rose-Marie
N1 - Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by the Alzheimer’s Society [AS-PhD-16-022], the Economic and Social Research Council [ESRC grant number ES/J500185/1], the European Commission’s Horizon 2020 Marie Skłodowska-Curie Innovative Training Network (ITN) actions [grant number 813196], the Promoting Independence in Dementia Project [ESRC grant number ES/L001802/2], and the INTERDEM Network Academy Fellowship Award 2018. Funding Information: We would like to thank Maggie Oattes, Yvette Vermeer, and Franka Meiland for their support in the research process. We would also like to thank Rebecca Light and Ciara Rafter for their assistance in data collection and all people living with dementia who participated in this study. We are grateful to the Dutch Meeting centres and the Center for Elderly Care Medicine Amsterdam of the VU University Medical Center for recruiting clients for this study. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by the Alzheimer’s Society [AS-PhD-16-022], the Economic and Social Research Council [ESRC grant number ES/J500185/1], the European Commission’s Horizon 2020 Marie Skłodowska-Curie Innovative Training Network (ITN) actions [grant number 813196], the Promoting Independence in Dementia Project [ESRC grant number ES/L001802/2], and the INTERDEM Network Academy Fellowship Award 2018. Publisher Copyright: © The Author(s) 2023.
PY - 2023/10
Y1 - 2023/10
N2 - 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.
AB - 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.
KW - dementia
KW - disclosure
KW - psychometrics
KW - secrecy
KW - stigma
UR - http://www.scopus.com/inward/record.url?scp=85165688825&partnerID=8YFLogxK
U2 - https://doi.org/10.1177/14713012231188503
DO - https://doi.org/10.1177/14713012231188503
M3 - Article
C2 - 37480343
SN - 1471-3012
VL - 22
SP - 1567
EP - 1585
JO - Dementia (Basel, Switzerland)
JF - Dementia (Basel, Switzerland)
IS - 7
ER -