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2018: The development of intercultural care and support for people with dementia from minority ethnic groups

Ethical issues in practice

This report and the accompanying recommendations are the result of work carried out in 2018 in the context of Alzheimer Europe’s European Dementia Ethics Network with funding from the European Commission and the Robert Bosch Stiftung. The goal of this work was to explore issues related to the need for and provision of intercultural care and support for people with dementia from minority ethnic groups in Europe. The report is targeted mainly at service developers and providers, health and social care professionals, policy makers and researchers. This is a topic of utmost importance in today’s society in the light of the ageing population and the increase in the number of older people from minority ethnic groups with dementia. A sevenfold increase in the number of older people with dementia from minority ethnic groups, for example, has been predicted in the UK. This, combined with reports of a lack of culturally appropriate services as well as low rates of diagnosis, as well as misdiagnosis of people from minority ethnic groups, are just some of the many factors which highlight the need for action. The topic of intercultural dementia care also fits in with Alzheimer Europe’s goal to promote a rights-based approach to dementia care. People from minority ethnic groups have a right to receive good quality and appropriate dementia care and support, starting with timely and accurate diagnosis. This does not always happen and when it does, all too often it is provided within a framework which reflects the cultural traditions, norms and awareness of the majority ethnic group.

The work was carried out by experts in a working group set up by Alzheimer Europe, with input from Alzheimer Europe’s member associations and the members of the European Working Group of People with Dementia. The report was circulated for wider consultation from additional experts in the field. A short biography of the members of the working group can be found in Appendix 1, as well as the names of all the experts, by experience or training, who provided feedback. Alzheimer Europe is immensely grateful to the members of the working group who produced this report, to all those who reviewed it and to the European Commission and Robert Bosch Stiftung for their financial support.

A broad review of the literature was carried out in a systematic manner, covering articles in peer-reviewed scientific journals as well as grey literature. Literature solely based on non-European minority ethnic groups was excluded, with the exception of a few published reviews covering a mixture of European and non-European studies. Members of the expert working group and contributors provided additional references to relevant peer-reviewed and grey literature, dissertations and chapters of books which they considered relevant.

One of the challenges was to report what has been learnt from research and experience working with specific minority ethnic groups (e.g. the Pakistani community in Norway, the Moroccan community in Belgium etc.) and to adapt this to a broader understanding of cultural and linguistic diversity across Europe (as well as within the specific groups studied). In this respect, it is important to bear in mind that some minority ethnic groups have been more widely researched than others. According to Nielsen et al. (2018), the largest minority ethnic groups in Western Europe are made up of people identifying with Middle Eastern (especially Turkish), North African (especially Moroccan), Eastern European and South Asian communities but less research is available on the experience of people from the first three groups.

People in socially vulnerable situations (e.g. living in poverty and in poor housing conditions, having difficulties reading and writing etc.) have a greater chance of health disparities but they are often not included in research. This typically includes people from minority ethnic groups who are considered as being ‘hard to reach’ and as not meeting the inclusion criteria for studies (e.g. because they have an insufficient number of years’ education, cannot read or write the main language of the country fluently or have other chronic health conditions). Invitations to take part in research are frequently written in a style that may be difficult to grasp for people with low levels of education and difficulties understanding the official language of the country. It is estimated that 60% of first-generation immigrants in the Netherlands lack proficiency in the Dutch language and consequently, may often be under-represented in healthcare research (Uysal-Bozkir, Parlevliet and de Rooij 2013). Research findings are nevertheless generalised and used to support the development of health and social care provisions for whole populations even though people from minority ethnic groups were not involved and the findings do not correspond to their needs and interests.

An additional goal of this project was to develop a database for the target groups mentioned earlier but also containing information of potential interest to people with dementia themselves and their supporters (e.g. family, friends and informal carers) from minority ethnic groups. As concluded by Bhattacharyya and Benbow (2013) in their systematic review of innovative practice with service provision and policy implications, the identification and sharing of good practice helps avoid the duplication of efforts and contributes towards replicating established and tested service models elsewhere. This database is an ongoing repository of information, which can be consulted on Alzheimer Europe’s website: https://www.alzheimer-europe.org/Ethics.

As this report covers a range of issues of relevance to the promotion of intercultural care and support and is targeted at a fairly broad audience, some sections might be of more interest to some readers than others. A summary of key points, recommendations/points for reflection can be found at the end of the different sections.

 

 
 

Last Updated: Wednesday 10 April 2019

 

 
  • Acknowledgements

    This report received funding under an operating grant from the European Union’s Health Programme (2014-2020) and from the Robert Bosch Stiftung. The content of the report represents the views of the author only and is his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains
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