UCL Unit for Stigma Research, Research Department of Clinical, Educational and Health Psychology, University College London, UK
Elaine Brohan
Centre for Global Mental Health, Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK
Drew Blasco
Department of Health Behavior and Health Education, School of Public Health, University of Michigan, Michigan, USA; Department of Social and Behavioral Sciences, School of Global Public Health, New York University, New York, USA; and Department of Social and Behavioral Health, School of Public Health, University of Nevada, Las Vegas, USA
Déborah Oliveira
Faculty of Nursing, Universidad Andrés Bello, Campus Vina del Mar,Chile; and Millennium Institute for Care Research (MICARE), Santiago,Chile
Centre for Dementia Studies, Brighton and Sussex Medical School, UK
Martin Knapp
Care Policy and Evaluation Centre, London School of Economics and Political Science, UK
Madeleine Stevens
Care Policy and Evaluation Centre, London School of Economics and Political Science, UK
Graham Thornicroft
Centre for Global Mental Health and Centre for Implementation Science, Health Service and Population Research Department, Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK
ESRC Centre for Society and Mental Health, King's College London, UK
Maximilian Salcher-Konrad
WHO Collaborating Centre for Pharmaceutical Pricing and Reimbursement Policies, Pharmacoeconomics Department, Austrian National Public Health Institute (Gesundheit Österreich GmbH/GÖG), Austria
Lawrence H. Yang
Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, USA
Background The recent World Health Organization (WHO) blueprint for dementia research and Lancet Commission on ending stigma and discrimination in mental health has identified a gap around dementia-related measures of stigma and discrimination that can be used in different cultural, language and regional contexts. Aims We aimed to characterise experiences of discrimination, and report initial psychometric properties of a new tool to capture these experiences, among a global sample of people living with dementia. Method We analysed data from 704 people living with dementia who took part in a global survey from 33 different countries and territories. Psychometric properties were examined, including internal consistency and construct validity. Results A total of 83% of participants reported discrimination in one or more areas of life, and this was similar across WHO Regions. The exploratory factor analysis factor loadings and scree plot supported a unidimensional structure for the Discrimination and Stigma Scale Ultra Short for People Living with Dementia (DISCUS-Dementia). The instrument demonstrated excellent internal consistency, with most of the construct validity hypotheses being confirmed and qualitative responses demonstrating face validity. Conclusions Our analyses suggest that the DISCUS-Dementia performs well with a global sample of people living with dementia. This scale can be integrated into large-scale studies to understand factors associated with stigma and discrimination. It can also provide an opportunity for a structured discussion around stigma and discrimination experiences important to people living with dementia, as well as planning psychosocial services and initiatives to reduce stigma and discrimination.
