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@ARTICLE{Schmachtenberg:155576,
      author       = {Schmachtenberg, Tim and Monsees, Jessica and Thyrian,
                      Jochen René},
      title        = {{W}hat 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},
      journal      = {Journal of public health},
      volume       = {31},
      issn         = {1613-2238},
      address      = {Heidelberg},
      publisher    = {Springer},
      reportid     = {DZNE-2021-00754},
      pages        = {331-343},
      year         = {2023},
      abstract     = {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?},
      subtyp        = {Editorial},
      cin          = {AG Thyrian},
      ddc          = {610},
      cid          = {I:(DE-2719)1510800},
      pnm          = {353 - Clinical and Health Care Research (POF4-353)},
      pid          = {G:(DE-HGF)POF4-353},
      typ          = {PUB:(DE-HGF)16},
      doi          = {10.1007/s10389-021-01531-z},
      url          = {https://pub.dzne.de/record/155576},
}