Do people with dementia and mild cognitive impairments experience stigma? A cross-cultural investigation between Italy, Poland and the UK

Abstract

Objectives: Until now little research has been done to answer the question of whether people with dementia experience stigma. No previous studies investigated possible differences between countries and cultures. Therefore, the aims of this study were to compare the experience of stigma (with social isolation, social rejection and internalised shame as components) among people with dementia and mild cognitive impairment (MCI) (n = 180) in Italy (n = 79), Poland (n = 47) and the United Kingdom (UK) (n = 54); and to investigate possible relationships with demographical and clinical outcomes.

Methods: A one group multinational cross-sectional design was used. Stigma was measured with the Stigma Impact Scale (SIS), quality of life aspects with Dementia Quality of Life scale (DQOL) and Quality of Life Alzheimer’s Disease scale (QOL-AD), social support with Duke Social Support Index (DSSI), cognitive functioning with Global Deterioration Scale (GDS).

Results: The level of stigmatisation (SIS) among study participants varied from 2 to 65 (median = 33.5; Q₁ = 27; Q₃ = 41). People with dementia in the UK experienced a higher level of stigmatisation than people in Italy and Poland. The experienced stigmatisation negatively correlated with social support (DSSI; rho = −0.42, p = 0.000) and quality of life (QOL-AD; rho = −0.39, p = 0.000). People who experienced a higher level of stigmatisation scored higher in negative mood DQOL subscale (rho = 0.28, p = 0.0002).

Conclusion: There is a strong need for research into the individual experience of people with dementia across the world. This could help in providing support and care services that match their experience, needs, preferences; and in designing well informed awareness campaigns based on their voice.

Keywords:

• Dementia
• stigma
• social support
• quality of life

Acknowledgements

The authors would like to highly appreciate the effort in collecting data by Mateusz Babicki and Katarzyna Osyra among people with dementia in Poland.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The work was supported by the framework of research aimed at promoting young scientists, funded by the Ministry of Science and Higher Education, Poland under the grant number STM.C230.16.020. The MeetingDem project was supported by the following funding organisations under the aegis of Joint Programme - Neurodegenerative Disease Research (JPND_HC-559-018): The Netherlands: ZonMw under grant number: 733051002, Italy: Ministero dell'Istruzione, dell'Universita' e della Ricerca (MIUR) (Ministry of Education, University and Research) under grant number: CUP: B32I14000470001 and Ministero della Salute - Codice Progetto (Ministry of Health) under grant number RRC-2013-2353248, Poland: Narodowe Centrum Badań i Rozwoju (National Centre for Research and Development) under grant number: DZP/1/JPND-II/2014, and The United Kingdom: Economic and Social Research Council under grant number: ES/L00920X/1.