Research on Dementia, Stigma and Disclosure
Current Projects
Digital interventions to support people with dementia in disclosing their diagnosis to their social network
Lead: Gianna Kohl
As part of her PhD, Gianna Kohl is investigating how people living with dementia and their family use technology to tell others about the dementia diagnosis, and how an online resource or app could be developed to support decision-making around "who to tell, how and when". Her study is part of DISTINCT, a unique academic and non-academic partnership across Europe, and funded by the Marie Skłodowska-Curie Innovative Training Networks (MSC-ITN) under the European Commission's Horizon 2020 programme. She is supervised by Georgina Charlesworth and Katrina Scior.
Past Projects
The 'Who to tell, how and when project'
Lead: Jem Bhatt
Funded by the Alzheimer's Society and ESRC, Jem conducted her PhD into positive ways to support people who have recently been given a diagnosis of dementia in considering whether to share this diagnosis and/or difficulties associated with dementia, and if so, what to share, and when and how to do so. This study was informed by Honest Open Proud and the broader literature on decision making and decision aids, and supervised by Georgina Charlesworth and Katrina Scior.
How do partners of people with dementia tell family and friends about the diagnosis?
Lead: Doug Hobson
It is estimated that there are currently 540,000 people caring for a family member with dementia in England and that one in three people will care for a person with dementia during their lifetime. One of many dilemmas is who to tell, at what point, and how much information to disclose. As part of his Doctorate in Clinical Psychology, Doug carried out research to understand factors that influence decisions about whether to disclose or conceal a partner's dementia diagnosis and to better understand the consequences of this. The study is supervised by Georgina Charlesworth.
Dementia related stigma across cultural and linguistic contexts
Lead: Jem Bhatt
Understanding the stigma experienced by people living with dementia is a global priority. Recent organisations such as the World Health Organisation and Alzheimer’s disease International have highlighted a gap around dementia-specific measures for experiences of stigma that can be used across various cultural and linguistic contexts. The aim was to establish (1) how attitudes towards dementia have been measured and (2) the psychometric properties of the Stigma Impact Scale (SIS) in a global sample of people living with dementia. Robust methodology was employed within a systematic review of literature to identify literature reporting stigma measurement in people living with dementia. Subsequently a statistical analysis using the Stigma Impact Scale was carried out, whereby data were analysed from 710 people living with dementia across five WHO regions that took part in a global survey from 33 countries and territories. Psychometric properties such as internal consistency, construct validity and factor structure were explored and reported.