%0 Journal Article
%A Schmachtenberg, Tim
%A Monsees, Jessica
%A Thyrian, Jochen René
%T What elements are important in current treatment and care guidelines to provide culturally sensitive care for people with a migration background and dementia? A systematic analysis
%J Journal of public health
%V 31
%@ 1613-2238
%C Heidelberg
%I Springer
%M DZNE-2021-00754
%P 331-343
%D 2023
%X Throughout Europe, the care of people with a migration background with dementia (PwM) poses a major challenge. In the EU, the number of PwM over 64 years of age rose considerably from 4.73 million in 2000 to 7.37 million in 2017 (United Nations Department of Economic and Social Affairs 2017) and will continue to grow. There is limited data on how many PwM are affected by dementia in Europe. Estimates are available for some countries, such as Germany (Monsees et al. 2018), but these have severe limitations for a European perspective. One key problem is the absence of a common definition of the term “migrant”. While the United Nations defines PwM based on their country of birth [PwM are living in countries other than their country of birth, (United Nations Department of Economic and Social Affairs 2016)], in Germany, the status is based on their own and their parents’ citizenship (PwM are those not born with German citizenship or who have at least one parent who was not born with German citizenship (Statistisches Bundesamt 2017)). The subject matter encounters definitional problems on many levels. In this study, we focus on people with a migration background (PwM) or synonymously migrants. We do not use the term “minority ethnic groups” as used in many international studies and reports. Our emphasis is on measures to improve the care situation of people who have immigrated to the country they currently live in. This specificity is associated with specific challenges that differ from the challenges faced by people from minority ethnic groups who might already have been living in the respective country for generations. While there are many similarities and intersections between these groups, not every member of a minority ethnic group is a migrant (Alzheimer Europe 2018). In some European countries, certain minority ethnic groups have specific rights (for example, concerning linguistic and culturally sensitive information) that PwM currently do not have in most countries. For these reasons, the authors believe that specific consideration of PwM in the context of dementia care is indicated. A detailed discussion on the definition of the term “migrant” and common concepts such as a “minority ethnic group” can be found in the Alzheimer Europe report “The development of intercultural care and support for people with dementia from minority ethnic groups” (Alzheimer Europe 2018). Another key problem is diagnosis. On top of the general problem of diagnosing dementia in the general population, underdiagnosis and late diagnosis of dementia are more widespread among PwM than in people without a migration background (Seven 2015). Particularly due to the lack of language- and culture-sensitive diagnostic tools, early and valid diagnosis of dementia is a major challenge for general practitioners (GPs) and specialists (Alzheimer Europe 2018).However, PwM with dementia are a group facing specific problems. There are reports that age-associated diseases such as dementia occur at a younger age and require care at an earlier stage (Gronemeyer et al. 2017; Kaiser 2009). In addition, dementia is often associated with an early loss of the language of the country of residence (Bundesministerium für Gesundheit 2011). While families and social networks have been described as important resources for PwM with dementia, the psychological burden on their families is often higher than that on families without a migration background (Kücük 2010; Montoro-Rodriguez and Gallagher-Thompson 2009; Piechotta-Henze and Matter 2008). This constitutes a high demand for support services (Jutlla 2015), and there is an evident need for sensitization, information, and networking among migrant communities and care providers. For example, dementia is considered to be a part of normal aging or attributed to religious or spiritual elements in some migrant communities (Chaouni et al. 2020; Deutsche Alzheimer Gesellschaft 2019; Xiao et al. 2015). Simultaneously, many service providers have limited knowledge about the specific care situation of PwM (Höfler et al. 2015).There is growing evidence that PwM with dementia are underrepresented in dementia-specific healthcare services (Giebel et al. 2015; Mukadam et al. 2011; Mukadam et al. 2015; Parveen and Oyebode 2018) and that family caregivers use fewer formal support services than people without a migration background (Dilworth-Anderson et al. 2002; Dunlop et al. 2003). This has been explained as resulting from language problems, cultural beliefs about dementia and care, stigma and shame, lack of information about available healthcare services, and lack of culturally, religiously, and linguistically appropriate services (Alzheimer Europe 2018; Bermejo et al. 2012; Bowes and Wilkinson 2003; Braun et al. 1996; Chaouni et al. 2020; Greenwood et al. 2015; Jett 2006; Mogar and von Kutzleben 2015). These factors lead to care inequalities, which should be addressed in treatment guidelines. However, a recent analysis of national guidelines on dementia care in the EU and EFTA (European Free Trade Association) countries has shown that the topic of migration plays a subordinate role in these guidelines. Moreover, no European country provides a separate, specific guideline for culturally sensitive care (Schmachtenberg et al. 2020b).Therefore, this study aims to provide a systematic overview of the key elements and measures with regard to culturally sensitive care referred to in scientific articles and statements, political documents, and medical guidelines. First, we identify which thematic and content-related priorities are set in the documents and statements examined. Subsequently, we describe some measures recommended to improve the care situation of PwM with dementia. These are not necessarily specific to migrant groups, and have a general and transnational character. This article is addressed to policymakers, health system leaders, and further decision-makers and care planners at national and international levels. It is intended to show them which elements are important for the holistic orientation of healthcare systems and structures towards culturally sensitive care. In a further paper by Monsees et al. (submitted but not published), intercultural care as a model for the implementation of culturally sensitive care by healthcare professionals and providers of healthcare services is described in detail (Monsees et al. 2021).Thus, the article aims to provide an answer to the following question: what elements play key roles in ensuring culturally sensitive care for PwM with dementia?
%F PUB:(DE-HGF)16
%9 Journal Article
%R 10.1007/s10389-021-01531-z
%U https://pub.dzne.de/record/155576