The development of intercultural care and support for people with dementia from minority ethnic groups The report entitled “The development of intercultural care and support for people with demen- tia from minority ethnic groups” received funding under an operating grant from the European Union’s Health Programme (2014–2020) and from the Robert Bosch Stiftung The report entitled “The development of intercultural care and support for people with demen- tia from minority ethnic groups” received funding under an operating grant from the European Union’s Health Programme (2014–2020) and from the Robert Bosch Stiftung. The content of this publication 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, the Con- sumers, 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. Th e development of intercultural care and support for people with dementia from minority ethnic groups 2 | DEMENTIA IN EUROPE ETHICS REPORT 2018 Contents 1. Preface . 3 2. Introduction . 5 Why intercultural care and support needs to be developed . 5 About ethnic groups: concepts and terminology . 6 The structure of this report . .14 3. Issues surrounding understanding dementia and help seeking . 15 Raising awareness about dementia amongst minority ethnic communities . 15 Promoting initial help seeking . 22 4. Issues surrounding diagnosis, assessment and treatment . 26 The complexities of dementia diagnoses in minority ethnic groups . 26 Challenges surrounding the development of culturally sensitive assessment and diagnostic tools 30 Overview of existing assessment and diagnostic tools . 36 Inequalities in access to and use of treatment by people from minority ethnic groups . 39 5. Support and care . .41 Diff erent approaches of relevance to the provision of intercultural care and support . .41 Challenges related to the uptake of services and support by minority ethnic groups . .44 Aspects of intercultural care and support provided to people with dementia . 51 6. Issues and challenges encountered by professional and informal carers . 60 Health and social care professionals . 60 Carers from minority ethnic groups . 62 Migrant carers . 63 Live-in carers . .67 7. Conclusion . 71 8. References . 72 9. Appendix 1 – Background information about the members of the expert working group . .81 10. Appendix 2 – Terms and concepts linked to intercultural care and support . 83 11. Appendix 3 – Diff erences in performance between illiterate and literate cognitively healthy Turkish immigrants on a visuo-constructional test . 88 DEMENTIA IN EUROPE ETHICS REPORT 2018 | 3 1. Preface This report and the accompanying recommendations are literature, dissertations and chapters of books which they the result of work carried out in 2018 in the context of considered relevant. Alzheimer Europe’s European Dementia Ethics Network with funding from the European Commission and the Rob- One of the challenges was to report what has been learnt ert Bosch Stift ung. The goal of this work was to explore from research and experience working with specifi c minor- issues related to the need for and provision of intercultural ity ethnic groups (e.g. the Pakistani community in Norway, care and support for people with dementia from minority the Moroccan community in Belgium etc.) and to adapt ethnic groups in Europe. The report is targeted mainly at this to a broader understanding of cultural and linguis- service developers and providers, health and social care tic diversity across Europe (as well as within the specifi c professionals, policy makers and researchers. This is a topic groups studied). In this respect, it is important to bear in of utmost importance in today’s society in the light of mind that some minority ethnic groups have been more the ageing population and the increase in the number of widely researched than others. According to Nielsen et al. older people from minority ethnic groups with dementia. (2018), the largest minority ethnic groups in Western Europe A sevenfold increase in the number of older people with are made up of people identifying with Middle Eastern dementia from minority ethnic groups, for example, has (especially Turkish), North African (especially Moroccan), been predicted in the UK. This, combined with reports of a Eastern European and South Asian communities but less lack of culturally appropriate services as well as low rates of research is available on the experience of people from the diagnosis, and misdiagnosis of people from minority ethnic fi rst three groups. groups, are just some of the many factors which highlight the need for action. The topic of intercultural dementia People in socially vulnerable situations (e.g. living in pov- care also fi ts in with Alzheimer Europe’s goal to promote erty and in poor housing conditions, having diffi culties a rights-based approach to dementia care. People from reading and writing etc.) have a greater chance of health minority ethnic groups have a right to receive good qual- disparities but they are oft en not included in research. This ity and appropriate dementia care and support, starting typically includes people from minority ethnic groups with timely and accurate diagnosis. This does not always who are considered as being ‘hard to reach’ and as not happen and when it does, all too oft en it is provided within meeting the inclusion criteria for studies (e.g. because a framework which refl ects the cultural traditions, norms they have an insuffi cient number of years’ education, and awareness of the majority ethnic group. cannot read or write the main language of the country fl uently or have other chronic health conditions). Invi- The work was carried out by experts in a working group tations to take part in research are frequently written set up by Alzheimer Europe, with input from Alzheimer in a style that may be diffi cult to grasp for people with Europe’s member associations and the members of the low levels of education and diffi culties understanding European Working Group of People with Dementia. The the offi cial language of the country. It is estimated that report was circulated for wider consultation from additional 60% of fi rst-generation immigrants in the Netherlands experts in the fi eld. A short biography of the members of lack profi ciency in the Dutch language and consequently, the working group can be found in Appendix 1 (p. 81), as well may oft en be under-represented in healthcare research as the names of all the experts, by experience or training, (Uysal-Bozkir, Parlevliet and de Rooij 2013). Research fi nd- who provided feedback. Alzheimer Europe is immensely ings are nevertheless generalised and used to support grateful to the members of the working group who pro- the development of health and social care provisions duced this report, to all those who reviewed it and to the for whole populations even though people from minor- European Commission and Robert Bosch Stift ung for their ity ethnic groups were not involved and the fi ndings do fi nancial support. not correspond to their needs and interests. A broad review of the literature was carried out in a system- An additional goal of this project was to develop a data- atic manner, covering articles in peer-reviewed scientifi c base for the target groups mentioned earlier but also journals as well as grey literature. Literature solely based containing information of potential interest to people on non-European minority ethnic groups was excluded, with dementia themselves and their supporters (e.g. with the exception of a few published reviews covering a family, friends and informal carers) from minority ethnic mixture of European and non-European studies. Members groups. As concluded by Bhattacharyya and Benbow (2013) of the expert working group and contributors provided in their systematic review of innovative practice with ser- additional references to relevant peer-reviewed and grey vice provision and policy implications, the identifi cation 4 | DEMENTIA IN EUROPE ETHICS REPORT 2018 and sharing of good practice helps avoid the duplication As this report covers a range of issues of relevance to the of efforts and contributes towards replicating established promotion of intercultural care and support and is tar- and tested service models elsewhere. This database is geted at a fairly broad audience, some sections might be an ongoing repository of information, which can be of more interest to some readers than others. A summary consulted on Alzheimer Europe’s website: https://www. of key points, recommendations/points for reflection can alzheimer-europe.org/Ethics/Ethical-issues-in-practice be found at the end of the different sections. DEMENTIA IN EUROPE ETHICS REPORT 2018 | 5 2. Introduction Why intercultural care and support needs to be developed The number of people over the age of 60 in the European that there is a risk of more and more people from minority Union is estimated to have risen from 7 million in 2010 to 15 ethnic groups developing dementia in the coming years million in 2015 (Diaz, Kumar and Engedal 2015) with minor- and not having access to appropriate care and support ity ethnic groups accounting for 9% of the population of which other members of society benefi t from. There is an Europe (Mazaheri et al. 2014). Many people who migrated urgent need to address this issue. to Europe in the 1960s to 1980s are now reaching an age at which the likelihood of developing dementia is signif- The increasing numbers of the older people from minority icantly higher (APPGD 2013, Cheston and Bradbury 2016). ethnic groups as a proportion of the population must also be considered in the light of evidence that some groups The number of people with dementia from minority ethnic are at higher risk of developing dementia, with a higher groups in Europe is predicted to rise dramatically in the prevalence of dementia in certain ethnic groups compared next few decades (APPGD 2013, Prince et al.