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Introduction

2018: Intercultural care and support


Why intercultural care and support needs to be developed

The number of people over the age of 60 in the European Union is estimated to have risen from 7 million in 2010 to 15 million in 2015 (Diaz, Kumar and Engedal 2015) with minority ethnic groups accounting for 9% of the population of Europe (Mazaheri et al. 2014). Many people who migrated to Europe in the 1960s to 1980s are now reaching an age at which the likelihood of developing dementia is significantly higher (APPGD 2013, Cheston and Bradbury 2016).

The number of people with dementia from minority ethnic groups in Europe is predicted to rise dramatically in the next few decades (APPGD 2013, Prince et al. 2015, Nielsen et al. 2011 and 2015, Parlevliet 2017). In the Netherlands, for example, a population-based prevalence study carried out by Parlevliet et al. (2016) recorded three to four times more people with mild cognitive impairment and dementia from non-western populations (i.e. Turkish, Moroccan Arabic, Moroccan Berber, Surinamese-Creoles and Surinamese-Hindustani) compared to native Dutch people. Such figures were reported as being similar to those found in four other recent studies comparing groups described as immigrants[1] with native populations in the Western world (Sagbakken and Kumar 2017).  Similarly, a seven-fold increase in the prevalence[2] of dementia amongst people from minority ethnic groups is predicted in the UK in the next 40 years (APPGD 2013), compared to a two-fold increase amongst the general population (Nielsen et al. 2018).

The word ‘minority’ is therefore perhaps misleading, suggesting that only small numbers of people are affected, which is not the case. Even if it were, it would not justify the current lack of appropriate intercultural care and support although it might partly explain the lack of perceived urgency to develop it. People from minority groups face challenges similar to those faced by older people from majority ethnic groups but many in addition experience challenges linked to holding a lower socio-economic status, discrimination and stigma linked to minority ethnic status and of being (or perceived as) a migrant and languages difficulties (Parveen, Oyebode and Downs 2014, Sagbakken and Kumar 2017). Moreover, according to Truswell (2016), the well-documented projected increase in the incidence[3] of dementia in developing countries, accompanied by calls for increased funding and improvements in health policy, largely bypasses minority ethnic communities. This means that there is a risk of more and more people from minority ethnic groups developing dementia in the coming years and not having access to appropriate care and support which other members of society benefit from. There is an urgent need to address this issue.

The increasing numbers of the older people from minority ethnic groups as a proportion of the population must also be considered in the light of evidence that some groups are at higher risk of developing dementia, with a higher prevalence of dementia in certain ethnic groups compared to others having been reported (Adelman et al. 2011, Plejert, Antelius, Yazdanpanah and Nielsen 2015). Livingston et al. (2017) report increased rates of dementia at a younger age amongst people of African origin living in the UK and USA who have high rates of hypertension. Similarly, in the UK, higher levels of dementia amongst Asian and Black Caribbean communities have been noted, which are attributed in part to high blood pressure, diabetes, stroke and heart disease, as well as to socio-economic factors (Adelman et al. 2011). Whilst some risk factors for dementia are not modifiable (e.g. linked to age and genetics), many are, and many symptoms can be managed with good dementia care (Livingston et al. 2017). It is therefore important that all members of society, including people from minority ethnic groups, have access to such care. This is currently not the case.

People with dementia from some minority ethnic groups are notably absent in residential care homes (Cooper et al. 2010, Stevnsborg et al. 2016). They and their families also tend to use fewer services compared to majority ethnic groups (APPGD 2013, Giebel et al. 2015, Greenwood et al. 2015, Jutlla 2015, Mukadam et al. 2011 and 2015, Parveen and Oyebode 2018). Possible explanations for this have been suggested such as ethnocentricism, lack of culturally appropriate services, cultural beliefs surrounding dementia and care, stigma and shame and negative evaluations of mainstream services, to name but a few. Also, older people from minority ethnic groups are in a potentially vulnerable situation based on what Rait et al. (1996 in Beattie et al. 2005) call a ‘triple whammy’ of age, ethnicity and socioeconomic deprivation. Consequently, some may feel that they have more pressing health and social concerns resulting in seeking help for possible dementia being low on their list of priorities, especially if they are not familiar with the condition. It should therefore not automatically be assumed that all challenges experienced by people from minority ethnic groups can be explained by cultural factors (Seeleman 2014).

Dementia can be disabling, preventing people from participating in society on an equal basis with others. As emphasised in Alzheimer Europe’s work on disability and dementia (2017), according to the social and rights-based models of disability, the barriers to equal participation in society do not reside solely in the individual but are also the result of the way that society is organised (including attitudes, practices, physical structures and procedures etc.). Society therefore has a responsibility towards people with disabilities (which by definition can include people with dementia) to provide timely and appropriate support. Recognising dementia as a potential disability means recognising that people with dementia have a right to receive such care and support, to express their needs and wishes, and to have a say in decisions relating to that care and support. This is also closely related to the ethical principles of respect for autonomy, beneficence, non-maleficence and justice (Beauchamp and Childress 2001) but also of respect for dignity, privacy and personhood. With regard to civil and political rights, Article 27 of the 1966 International Covenant on Civil and Political Rights is also relevant: 

“In those States in which ethnic, religious or linguistic minorities exist, persons belonging to such minorities should not be denied the right, in community with the other members of their group, to enjoy their own culture, to profess and practice their own religion, or to use their own language.”

The term ‘reasonable accommodation’ is sometimes used to refer to the measures that should be taken to maximise the potential of people with disabilities to participate in society on an equal basis with others. However, when determining what is ‘reasonable’, there is a risk of this being based on the needs and wishes of the majority ethnic group. Those of minority ethnic groups risk being overlooked, ignored or neglected - hence the need for intercultural care and support. In some cases, this may be an oversight resulting from a lack of awareness and understanding of cultural differences, needs and preferences; in others, there may be an element of discrimination, either interpersonal or structural (i.e. perpetuated through existing structures and practices). Such oversight or discrimination is unacceptable in today’s multicultural Europe and must be challenged on the grounds of equity/justice, respect for all human beings and for the dignity of the individual, tolerance and recognition of cultural diversity as a source of richness. 

The overall aim of this project is to improve the situation of people with dementia, their supporters and professional carers from minority ethnic backgrounds through the identification and promotion of intercultural care and support. Intercultural care and support in the context of this project is about looking at ways to respect and respond to the cultural diversity of people with dementia, their relatives and friends and of those caring for people with dementia.

The members of the expert working group acknowledge that work on this document was initiated within a cultural frame of reference reflecting broad values embraced predominantly by majority ethnic groups within the European community, such as human rights, equity and respect for autonomy. However, within the expert working group, there are people from both majority and minority ethnic groups, including some who have migrated to or within Europe in the last few decades. There are also members of the group who are familiar with some of the main world religions i.e. Sikhism, Islam, Christianity and Judaism. In addition, for most members of the group their work brings them into direct contact with people with dementia and carers or supporters from minority ethnic groups on a regular basis. We have tried to be aware of the influence of the context and of our own, albeit varied cultural backgrounds, in order to explore the literature systematically but with an open inquisitive mind, attentive to other possible values, perspectives and priorities.

[1] The use of various terms is discussed further in the linked page :"Ethnic groups: concepts and terminology" and also in the section "Terms and concepts".

[2] Prevalence means the total number of cases in a population (includes old and new cases and is often expressed as a percentage of the population).

[3] Incidence means the number of new cases in a given period (e.g. within a year).


About ethnic groups: concepts and terminology

This report contains a lot of different terms which some people might not be familiar with. In the following sub-sections, we provide a brief definition and explanation for our use of certain key terms, explore some of the assumptions about majority ethnic groups, especially in relation to the concept of a unified, homogenous nation, and finally, look at the fluctuating and dynamic nature of ethnic groups.

Some of the key concepts mentioned in this section

  • Interculturalism: the acceptance and promotion of cultural diversity, reflected in the way that people interact, understand and relate to each other, and through policies and practice which help ensure equal opportunities, respect and fair treatment of people from all ethnic groups.
  • Ethnicity: a shared culture, often incorporating a common language, geographic locale or place of origin, religion, sense of history, traditions, values, beliefs and food habits.
  • Cultural awareness: knowledge about different cultures (e.g. different religions, traditions, common beliefs and preferences, history and shared values).
  • Cultural sensitivity: acknowledging cultural differences and similarities between people without assigning them a value (e.g. good or bad, right or wrong).
  • Cultural competence: knowledge combined with appropriate attitudes and skills (e.g. openness, respect, awareness of one’s own background, readiness to question one’s own assumptions, ability to communicate with people from different cultures and readiness to use external help when needed).
  • Minority ethnic group: a group of people who share a common cultural identity which differs in some way to that of the majority ethnic group in a particular country.
  • Majority ethnic group: the group of people sharing the most common ethnicity in a particular country, often believed to be a homogenous group and often considered as being one unified nation consisting of a single ethnic group. Sometimes referred to as ‘native’ or ‘White’ even though these terms are problematic.
  • Migrant and immigrant: unclear concepts with varying definitions. Sometimes defined by foreign birth, foreign citizenship or movement into a new country to stay temporarily or to settle for the long-term. Often associated with ethnic or religious minorities and with asylum seekers and refugees.
  • Race: a contested concept reflecting the categorisation of groups of people into sub-groups on the basis of alleged biological differences (including visible physical traits or characteristics as well as behaviours), which it is claimed have been passed down from generation to generation through people’s genes.

Overview and reasons for the choice of key terms used in this report

There are several key terms, which are central to the topic of this report, namely ‘intercultural care and support’, ‘cultural awareness’, ‘cultural sensitivity’, ‘cultural competency’, ‘minority ethnic group’, ‘ethnicity’, ‘migrant’ and ‘immigrant’. The following quote, from Age Action, provides a broad description of the main principles of interculturalism, which can be applied to different domains such as education and healthcare.

“Interculturalism is essentially about how we interact, understand and respect each other. It is about ensuring that the cultural diversity of a population is acknowledged and catered for; so that minority ethnic groups are included by design and planning not as an add-on or afterthought. An intercultural approach recognises and encourages people’s freedom to keep their identities alive, supporting all cultures to flourish together and share their heritage. It sees difference as something positive that can enrich society and recognises racism as an issue that needs to be tackled in order to create a more inclusive society” (Age Action 2015, pX).

Intercultural care and support for people with dementia should not start after diagnosis when needs arise but prior to diagnosis, ensuring that people from minority ethnic groups are aware of dementia and obtain timely and accurate diagnoses which make care and support, as well as treatment, possible if and when needed. For this reason, our definition of ‘intercultural care and support’ is quite broad, covering the period preceding diagnosis up to the end of life. Intercultural care and support should respond to and respect the cultural identities of people from minority ethnic groups and it is therefore essential to have some understanding of what is generally important to people from different ethnic groups and of the things that many members of those groups have in common. At the same time, it is important not to lose sight of individuals amongst generalisations and stereotypes or to go overboard by seeking to impose cultural traditions which are not meaningful to a particular individual (e.g. assuming that people are strict or practising Muslims or Hindus because of their name, appearance or the language they speak, and for that reason denying them certain food, which they might actually like and regularly eat). Ethnicity is often an important aspect of a person’s identity but only one aspect. Moreover, people from all ethnic groups have a great deal in common and these similarities also need to be recognised and promoted. 

Intercultural care and support requires cultural awareness, cultural sensitivity, cultural competence, willingness and motivation, as well as support from policy makers and funders.  Ardila (2005, p. 185) has identified three different aspects of culture, namely:

  1. The internal, subjective or psychological representation of culture, including thinking, feeling, knowledge, values, attitudes, and beliefs.
  2. The behavioural dimension, including the ways to relate with others, ways of behaving in different contexts and circumstances, festivities and meeting, patterns of associations, etc.
  3. Cultural elements: the physical elements characteristic of that human group such as symbolic elements, clothes, ornaments, houses, instruments, weapons, etc.

These aspects focus on things that people from a particular ethnic group might have in common but do not rule out individual differences between the members of a particular group. Cultural awareness means having some knowledge about different cultures (e.g. about different religions, traditions, common beliefs and preferences, history and shared values). Seeleman emphasises the need to be aware of one’s own cultural background and perspectives, adding that “culture is not something that only belongs to others” (2014, P, 98). Cultural sensitivity means being aware of different cultures but not linking that awareness to value judgements. Cultural competence means being able to put that knowledge into practice. It therefore requires not only knowledge but appropriate attitudes and skills such as openness and respect, awareness of one’s own background, readiness to question one’s own assumptions, stereotypes, biases and prejudices, flexibility and creativity, the ability to make information understandable and readiness to use external help (e.g. interpreters) if and when needed (Seeleman 2014). Cultural awareness and competence can be acquired through training, through experience and through observation and communication with people from minority ethnic groups (i.e. when in doubt, asking explorative questions, listening and being aware of the context) (Seeleman 2014).

The term ‘minority ethnic group’ is used to refer to a group of people who share a common cultural identity which differs in some way from the majority ethnic culture in a particular country (the latter representing the standard cultural norm in terms of food, language, cultural activities, pastimes, religion, traditions and festivals etc.). Members of some ethnic groups are in a minority by virtue of numbers and in relation to ethnicity (Botsford and Harrison Dening 2015). The cultural and linguistic diversity of minority ethnic groups, combined with other societal contributing factors, means that greater effort is needed to ensure that their needs and preferences are equally addressed. The term ‘minority ethnic group’ is sometimes used in preference to ‘ethnic minority group’ to emphasise that everyone belongs to an ethnic group, as opposed to suggesting minority status based on being a member of an ethnic group per se. We are not assuming that everyone identifies with an ethnic group but accept that most people probably do.

References to ‘ethnicity’ (or ‘ethnic’) are generally associated with the identification with a group of people or a community on the basis of a perceived shared culture. Smedley and Smedley (2005) describe this as follows:

“Ethnicity refers to clusters of people who have common culture traits that they distinguish from those of other people. People who share a common language, geographic locale or place of origin, religion, sense of history, traditions, values, beliefs, food habits, and so forth, are perceived, and view themselves as constituting an ethnic group” (2005, p.17).

As language gradually changes over time, terminology surrounding ethnicity and the people from different ethnic groups also changes, with some terms coming to be considered as offensive or disrespectful (Botsford 2015). This can also lead to uncertainty about which term to use. To complicate matters, some terms are considered appropriate and respectful in one geographical area or language but not in others (e.g. such as Black, coloured and gypsy).  Terms can also be considered more or less acceptable depending on who uses them, how and in what context. The term ‘gypsy’, for example, is used by some people from traveller communities and by some associations representing their rights[1] but many people consider the term offensive[2]. In the context of her research, Jaakson (2018) asked members of the Finnish Roma community what they would like to be called (e.g. Roma, travellers or gypsies). They replied that the term used was of little importance; what mattered was the way a person addressed them (e.g. the tone of voice, facial expression etc.).

Some terms gradually fall out of use because they reflect concepts which have come to be considered as scientifically invalid. ‘Race’ is one such example. It is a highly contested concept which neither Alzheimer Europe nor the members of the expert working group adhere to. It nevertheless continues to be used in various policies and in everyday life. The terms ‘race’ and ‘ethnicity’ are frequently found in documents side by side with no explanation about their respective meanings, and sometimes used as if they were interchangeable. The term ‘race’ reflects a categorisation of groups of people on the basis of alleged biological differences (often including visible physical traits or characteristics), which it is claimed have been passed down from generation to generation (i.e. genetic differences). The concept of race is often associated with the belief that some races are inferior and even ‘less human’ than others, with devastating consequences for certain groups of people (e.g. discrimination, colonisation, slavery and genocide). Opponents of this concept point out that so-called racial groups are not genetically discrete, measurable or scientifically meaningful and that there is more genetic diversity within ‘races’ than between them (Smedley and Smedley 2005, Mersha and Abebe 2015). The term ‘race’ has been largely replaced by concepts such as ‘genetic background’ or ‘hereditary factors’.

A few additional terms are used in this report which have been taken from the numerous studies that we cite, the most frequent being ‘migrant’ and ‘immigrant’ (as well as BME and BAME which are discussed in the next sub-section). Migrant and immigrant are fairly unclear concepts for which there is no commonly agreed definition. They are sometimes based on criteria reflecting foreign birth, foreign citizenship or movement into a new country to stay temporarily or to settle for the long-term. Sometimes fixed periods of residency in the receiving country are stipulated. The term ‘native’ (e.g. native-Norwegian or native-Italian), which is used by some researchers to refer to the majority ethnic group, might also reflect an emphasis on whether or not a person was born in a particular country although it is then unclear where 2nd or 3rd generation minority ethnic groups fit in. On the other hand, this might avoid the use of the term ‘White’ and an emphasis on skin colour (bearing in mind that some minority populations in Europe, such as Irish and East-European communities, also tend to be predominantly ‘White’). The terms ‘migrant’ and ‘immigrant’ are often associated with ethnic or religious minorities and with asylum seekers and refugees. Sometimes, as with the terms ‘White’ and ‘native’, it is not clear to which groups they apply. Because of possible ambiguity and the risk of misrepresenting researchers’ findings, we have decided to stick to the terms used by the researchers when reporting their findings and elsewhere to refer to minority and majority ethnic groups[3]. In the section "Terms and concepts", we provide a few more details about issues surrounding the use of the terms race, ethnicity and minority ethnic groups.

The conceptualisation of majority and minority ethnic groups

Some of the issues described in this report might, at first glance, seem to be based on clearly defined, stable concepts reflecting ‘binary oppositions[4]’. Two distinct groups are identified, namely people from minority ethnic groups and people from majority ethnic groups.  The problem with binary opposition, is that it can create boundaries between groups of people such as between men and women, between people from different social classes and, of interest to our work, between people from different ethnic groups. According to Rock (not dated), binary oppositions can lead to prejudice and discrimination, often fuelled by fear and perceptions of the opposite group as being ‘the other’.

For centuries, the traditional notion of nations as one unit, one people, one culture and one language has permeated many countries in Europe. A nation, in this sense, is considered as:

“A group of people who see themselves as a cohesive and coherent unit based on shared cultural or historical criteria. Nations are socially constructed units, not given by nature. Their existence, definition and members can change dramatically based on circumstances. Nations in some ways can be thought of as ‘imagined communities’ that are bound together by notions of unity that can pivot around religion, ethnic identity, language, cultural practice and so forth. The concept and practice of a national work to establish who belongs and who does not (insider vs. outsider)” (Rock, not dated).

The term ‘Nation-State’ is sometimes used to describe the concept of a country in which the cultural boundaries match the geopolitical boundaries. This is often characterised by a uniform national culture with state policy influencing to some extent education, language use and a common interpretation of history, and the state being perceived as representing a homogenous group. Whilst rare in practice, such perceptions may have implications for minority ethnic groups, contributing towards a ‘them’ and ‘us’ situation[5].

A closer look at what may seem to be clearly defined groups reveals that they are not entirely homogenous in that there are many similarities as well as differences between apparently opposing groups. Moreover, most countries are actually ‘polyethnic’ (made up of numerous ethnic groups), with very few states meeting the criteria for ‘one nation, one state’ (approximately 10% worldwide) (Rock not dated). The notion no longer holds true in the current period characterised by free movement of citizens within Europe and of great migration from other continents. Consequently, whilst it may be helpful to identify certain groups of people in order to explore their needs, rights, beliefs and preferences etc., care must be taken to avoid making assumptions, stereotyping and overlooking the many similarities between groups, as well as the fluctuating boundaries between groups and concepts, and their dynamic nature.

Fluctuating boundaries between and within minority ethnic groups

According to Barth (1998), ethnic groups are also not permanent, inflexible entities but rather open to change, with the possibility of people moving in and out of them. People define themselves as belonging to a particular ethnic group and are also identified by others as belonging to that group (as opposed to another group). They also develop together the criteria for group membership, emphasising similarities between members of the group which are significant and ignoring those which are not (also with regard to intra-group differences).

An important aspect of ethnicity is that it is not something that is biologically determined, fixed or linked to nationality or a place of birth, even though members of a group might share a common ancestral geographical origin and a tradition of common descent (i.e. including people who migrated to a country and their descendants).  Not everyone from a minority ethnic group is a migrant[6] but descendants of migrants (e.g. second or third generation descendants from Portuguese migrants living in Luxembourg or from Somalia living in the Netherlands) sometimes encounter similar difficulties linked to cultural and linguistic issues and experience social exclusion or discrimination. However, minority ethnic groups and cultures are dynamic, constantly changing and adapting to new environments. Cultural practices and language use may gradually change as people adapt in relation to a new society.  The term ‘acculturation’ is used to refer to the occurrence of change “when individuals from different cultural backgrounds come into prolonged, continuous, first-hand contact with each other” (Redfield et al. 1936, p.136)[7].  So on the one hand, children of migrants may experience some of the same difficulties as their parents or grandparents, on the other hand as a result of the process of acculturation, their experience of and attitudes towards dementia, health and service use, might be quite different. Consequently, assumptions cannot be made based on a person identifying with a minority ethnic group.

The names given to minority ethnic groups often reflect the geographical origin of the members of that group who initially migrated to a particular country. This may lead to assumptions being made about similarities between groups bearing the same name in different parts of Europe (e.g. people from Syrian communities living in Norway and in Austria) and overlooking significant differences such as different languages, religious beliefs, shared histories and traditions.

Members of ethnic groups are increasingly making their voices heard and influencing how they are defined and labelled. The term BME (Black and Minority Ethnic), for example, which has been used in the UK for many years was adopted as a means to group together different ethnic groups under the universal term ‘Black’ to fight against discrimination.  According to Sandhu (2018), some people were not happy about being grouped together under such a general term and to the prominence given to Afro-Caribbean people. The term BAME (Black, Asian and Minority Ethnic) therefore emerged as an alternative. Nevertheless, even though over 7.6 million people in the UK identified their ethnicity as BAME in the 2011 UK census, some people do not want to be categorised in this way, often wishing to incorporate the term ‘British’ into the description of their ethnic identity (e.g. Black British, or Caribbean British) (Sandhu 2018). Pressure groups have also campaigned for recognition as a minority ethnic group and not to be considered as part of the majority ethnic group on consensus forms (e.g. people from the Irish community and from traveller communities in England and Wales).  It is not clear, however, whether people from minority ethnic groups outside the UK have been successful in influencing the terms used to refer to their members.

People have multiple, intersecting and overlapping identities. The sense of belonging and the different aspects of cultural identity a person wishes to emphasise may fluctuate over time and according to the situation. Different minority ethnic groups may have things in common such as certain shared values and preferences and, in many cases, a vulnerable status and lack of political power (Moodley 2005, APPGD 2013). Amongst those who migrated in the context of guest worker programmes, many had little or no education and experienced racism and prejudice. Many people from minority ethnic groups also have a low socio-economic status (Moodley 2005, APPGD 2013, Parveen, Oyebode and Downs 2014, Liversage & Jakobsen 2016, Sagbakken and Kumar 2017, Berdai Chaouni and De Donder 2018). However, there are numerous differences between and within different ethnic communities (e.g. with regard to religion, gender, class and language). Rauf (2011) uses the term ‘communities within communities’ to explain these within-group differences. Vertovec (2007) highlights the “super diversity” of minority ethnic populations, drawing attention to the rising diversity within groups in relation to country of origin, socio-economic status and religious and cultural traditions. Such differences can, according to Uppal, Bonas and Philpott (2013), impact on defining individual norms, values and experiences. In this way, a person may feel closely connected to the Sikh community in relation to certain aspects of his/her life (the focus thus being on religion) but relate to the British Asian community in relation to certain other aspect of life (with a focus on other shared values and traditions). Religious groups are sometimes considered as minority ethnic groupsper seeven if the religion is interpreted and practised differently from one community to the next by people who do not all share the same cultural tradition or language and do not have the same common ancestry. Religion is sometimes a uniting factor which cuts across other aspects of people’s cultural identity.

Inter and intragroup differences are important to bear in mind when developing services which are not only culturally sensitive but also respond to the needs and wishes of individuals. It should not always be assumed that people from minority ethnic groups are different from those in the majority ethnic group. The right balance is needed between respect for cultural diversity and respect for the individual as a person in his or her own right, regardless of any ethnic group that he or she might identify with.

[1] For an overview of various related terms used in the UK, please see: http://leedsgate.co.uk/sites/default/files/media/Ethnicity-Briefing.pdf

[2] In this report, the term ‘traveller’ or ‘member of traveller communities’ will be used.

[3] Except where we specifically look at the experience of professional carers from minority ethnic groups who have recently migrated to Europe.

[4] Binary oppositions are generally perceived as being things that cannot co-exist. A light switch, for example, can be off or on, but not both at the same time.

[5] In its glossary of terms related to international migration, UNESCO (2017) suggests that in Western Europe nationalism is currently more a matter of hostility against immigrants than against other nations, adding that this may well be motivated more by the implications that an ethnically diverse population has for the welfare state than by notions of cultural superiority.

[6] This was one of the main reasons for not focusing on migrants when addressing the topic of intercultural care and support.

[7] See also the sub-section on migrant carers.


Key points from the Introduction

A few words about terminology…

  • The main emphasis in this report is on people from minority ethnic groups, irrespective of migrant or immigrant status.
  • Neither minority nor majority ethnic groups are totally homogenous. There are many differences within specific minority ethnic groups, as well as similarities between minority and majority ethnic groups. 
  • Terms other than ‘person/people from a minority ethnic group’ are frequently used in this report to reflect the terminology used by researchers and writers whose work or findings are reported.
  • The authors of this report consider ‘race’ an inappropriate term with no scientific validity.

The key points…..

  • Ethnicity is generally associated with the identification with a group of people or a community on the basis of a perceived shared culture (e.g. in relation to values, beliefs, history, food preferences and/or religion).
  • The number of people with dementia in Europe from minority ethnic groups is increasing.
  • People with dementia from minority ethnic groups are potentially vulnerable due to a combination of several factors such as age and ethnicity and in many cases a history of discrimination, a lower level of education and a lower socio-economic status.
  • People with dementia from minority ethnic groups are notably absent from residential care and use fewer services compared to people from majority ethnic groups.
  • Several reasons might explain the low uptake of services by people from minority ethnic groups (e.g. culturally inappropriate services, beliefs about dementia, lack of awareness of services etc.).
  • As dementia is recognised as a disability, people with dementia are entitled to care and support to enable them to participate in society on an equal basis with others.
  • Measures to make this possible often reflect the needs and wishes of the majority ethnic group. Those of people from minority ethnic groups are often ignored or overlooked.
  • Intercultural care and support requires cultural awareness and cultural competence.

Recommendations

  • In the context of dementia care and support, the cultural diversity of populations should be recognised and promoted in order to enable people from minority ethnic groups to keep their identities alive and for different cultures to flourish.
  • The development and provision of intercultural dementia care and support should be a priority in Europe.
  • Reasons for low levels of service use must be explored and appropriate action taken to ensure that people with dementia and carers from minority ethnic groups receive the same level and quality of care and support as that provided to people from the majority ethnic groups across Europe.
  • The needs and wishes of people from minority ethnic groups, including those from less obvious (e.g. ‘White’) minority ethnic groups, should be incorporated into the design and planning of care and support and not treated as an add-on or afterthought.
  • The development of intercultural dementia care and support should be properly funded, on a long-term basis, not just as pilot projects.
  • Professional carers and service providers/commissioners should consider the need to address social as well as cultural factors in relation to issues experienced by people from minority ethnic groups. 
  • Public health initiatives should be developed as a means to empower people from minority ethnic groups living in deprived neighbourhoods and with a low socio-economic status to benefit from existing care and support on the same basis as other people. 
  • Policies should be developed to support collaboration between different health and social care professionals and to support them in acquiring the expertise needed to meet the needs of people from minority ethnic groups.
  • The term ‘race’ (and derivatives such as ‘racial’) should, wherever possible, be avoided. It should not be considered as meaning the same thing as ‘ethnic’ or ‘ethnicity’ .
  • Consensus should be sought at European level about the definition of ‘migrant’ and ‘immigrant’.
  • People from specific ethnic groups should be given an active role in determining which terms are used to categorise and describe members identifying with those groups (e.g. in official documents, for the purpose of a census etc.). 
  • The potentially vulnerable position of many people from minority ethnic groups threatens their right to be treated equally and this must be challenged in order to respect the moral principle of equity.
  • Ignorance, prejudice and interpersonal as well as structural discrimination need to be addressed.

 

 
 

Last Updated: Monday 20 May 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
  • European Union
 
 

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