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AE working group meets in Bradford to discuss dementia and minority ethnic groups

Friday 18 May 2018

Alzheimer Europe has set up a working group to improve the situation of people with dementia, their supporters and professional carers from minority ethnic groups through the identification and promotion of intercultural/culture sensitive care, support and services. The group met for the first time in Bradford in the United Kingdom on 18 May. AE would like to thank the University of Bradford for kindly hosting this meeting. We would also like to thank the European Commission and the Robert Bosch Stiftung for funding this project.

The group has experience working with people with dementia from several minority ethnic groups covering many different languages, religions and cultural traditions. Members of the group have expertise in connection with minority ethnic groups in the fields of service provision, screening and diagnosis, advocacy, informal care and linguistics. Members of the European Working Group of People with Dementia (EWGPWD) and representatives of Alzheimer Europe’s member associations have also been involved in the project, sharing their knowledge, experience, contacts and information about good practices (during two meetings held in March and February, respectively). Feedback about this work from people with dementia and informal carers from minority ethnic groups will also be sought through the intermediary of some of the members of the working group and Alzheimer Europe’s member associations.

A number of issues have already been identified in the literature review. These include, amongst others, the need for culture-sensitive screening and diagnostic tools, different perceptions of dementia and attitudes towards help seeking, familism and filial responsibility, gender issues, lack of trust in health and social care providers, stereotyping by health and social care professionals, difficulties linked to interpretation in the context of diagnosis and care, and stigma, especially surrounding the provision of care from outside the family.

A second meeting is planned in August at which members of the working group will discuss the literature review and preparations for the first draft report. The first findings of the project will be presented and discussed with member associations and members of the EWGPWD at the AGM in Barcelona in October. The results of the project will include a report and guidelines, mainly targeted at policy makers, service providers and health and social care professionals, as well as a database with information and links to good practices and initiatives.

Members of the working group, who can be seen on the photo, include:

From left to right on the back row: Akhlak Rauf (UK), Siiri Jaakson (FIN), Michal Herz (UK/ISR), Daphna Golan Shemesh (ISR), Thomas Rune Nielsen (DK), Dianne Gove (LU) and Sahdia Parveen (UK)

From left to right on the front row: Charlotta Plejert (SWE), Ripaljeet Kaur (UK) and Carolien Smits (NL).  Jean Georges was not on the photo (as he took it).