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Aspects which directly impact daily life

Support and care


Aspects of intercultural care and support provided to people with dementia

This section is about aspects of intercultural care and support which have a direct impact on the daily lives of people with dementia from minority ethnic backgrounds, and in some cases of their carers. It covers a range of issues such as language, food and drink, appearance and dress, religion, understanding life histories and end-of-life care. A lot of the information covers issues which are specific to minority ethnic groups. Minority ethnic groups are made up of people who may have a lot in common but whose thoughts, feelings and behaviour are not determined solely by their culture. They are unique individuals. The aim is therefore not to emphasise differences between minority and majority ethnic groups but rather to serve as a starting point to develop cultural awareness by highlighting some of the things that are important to many, but not all, people from minority ethnic groups. This should, hopefully, promote reflection and the desire to better understand people from difficult cultures. Often, behind the apparent differences (e.g. related to appearance, traditions and religious practices), there are similarities and shared values. Culture is one aspect of a person’s identity which needs to be recognised but should not overshadow their individuality. An understanding of shared cultures needs to be balanced with knowledge of the individual so that people are not regarded merely as members of ‘other’ groups with collective norms (Mackenzie 2007).

As Rauf suggests (2011, p.16),

“It is important that people are respected as individuals and individual families rather than seen as generalised conceptions of stereotypical groups.”

Issues related to language and communication

It is important for all people with dementia to have the opportunity to communicate in their own language, not only for the purpose of getting across their needs and wishes and of understanding those of other people but also as means to develop relationships and to establish and maintain a sense of self and identity. The social as well as functional aspects of language are particularly important in the context of intercultural care. Professional carers should not underestimate the huge importance of mundane, social talk when providing care (Plejert et al. 2017). The ability of professional carers to get to know and understand people who are often from very different cultural backgrounds to their own is essential and yet often hampered by language difficulties. Based on their experience of developing cultural sensitivity in memory work, Jaakson, Hemmilä and Jaakkola (2017) emphasise the importance of core steps that include reaching out, engagement, dialogue, building a relationship based on trust and constant reflection about one’s own work. Poor communication between professional carers and people with dementia from minority ethnic groups can also result in the latter being considered as having more cognitive deterioration than they actually have and being incorrectly medicated (Söderman and Rosendahl 2016). A common language can make it easier to understand cultural values and traditions that are important to people.

“Language difficulties, then, constitute a central challenge in intercultural geriatric care, particularly in relation to dementia, either when minority elders lose whatever of the majority language they once knew or when ethnic minority health care personnel’s majority language skill is limited” (Hanssen 2013, p.234).

A major problem in ensuring that people from minority ethnic groups can receive care from professionals who speak and understand their language is that there are so many languages and dialects. In some countries, there are already two or three national languages (such as in Luxembourg, Belgium and Switzerland) on top of which it would be necessary to add further languages. It would be ideal to have bilingual professional carers who reflect the local demography (Bhattacharyya and Benbow 2013). This would, in theory, be possible provided that sufficient numbers of people from the relevant cultural groups wished to work in this area. If this were not the case, measures would need to be taken to increase interest in this type of work and perhaps training possibilities for people from the relevant minority ethnic groups. It is questionable, however, how practical this solution would be for services covering people from a wide range of minority ethnic groups speaking several languages.

This brings us back to the issue of mainstream or specialised services raised earlier. In Sweden, Söderman and Rosendahl (2016) compared the pros and cons of residential care for Finnish-speaking older people either in a home in which all the staff were Finnish speaking or in a home where there was a mixture of Swedish speaking and bilingual staff. The findings seem to show very clearly the superiority of the Finnish-speaking staff home in providing person/relationship-centred care (some of which is mentioned in the sections below). This might seem to suggest that where resources are available, the number of people from the minority ethnic group is sufficiently high and there is sufficient demand within that group, it might make sense to develop specialised services. For example, in the Northwest of England, there are several residential homes for people from the Jewish community (Ahmed et al. 2017). This approach is sometimes called ‘ethnic matching’ or ‘linguistic matching’. Plejert et al. (2017) draw attention to earlier studies carried out by Jansson (2014) and Ekman et al. (1993 and 1994) which further support the conclusion that linguistic (as well as cultural) competence of professional carers is essential for creating a trusting relationship and promoting well-being amongst people from minority ethnic groups in residential care.

Whilst it may often be beneficial to match staff from the same cultural background with service users, some families would prefer to have someone from outside their community because of stigma (APPGD 2013). Looking at this from an ethical perspective, a typical Western European response, based on a focus on individual autonomy, might be that the decision should be based on the wishes of the person with dementia, if known. This could be interpreted as failing to respect the role of the family within that person’s culture with regard to healthcare decision-making. At the same time, care must be taken to avoid making assumptions about care arrangements based on stereotypes about people from certain minority ethnic groups and failing to seek the views of the person with dementia.

In cases where linguistic matching is not desired or feasible, other approaches are possible to try to ensure that people are understood and feel valued in their interactions with professional carers and, in the residential or day care setting, with other residents. Plejert et al. (2018) report strategies observed by Jansson (2012ab, 2014) which involve learning frequently-used words, repeating words just used by the resident and singing phrases in the person’s mother tongue. This playful use of language helps establish social relations with residents and can be helpful in gaining their cooperation when carrying out care tasks that the residents do not particularly like. It might also sometimes be helpful, as a form of distraction, to defuse difficult situations or manage anxiety.

Technical communication aids, may, to some extent help. Free online translation tools, for example, could, if used with some caution, aid and support communication, as could some other low-tech solutions such as communication boards with pictures. Applications for iPads are also currently being developed for mono- as well as multilingual communication support in Europe, but research on their usefulness is still primarily based on the monolingual setting.

Bhattacharyya and Benbow (2013) suggest that professional carers could be encouraged to learn languages or at least key words to show families and residents that they are making an effort and are interested in them as people. The ability to learn some of the basic words and gain a basic understanding of languages used by residents and service users can be enhanced with the help of bilingual colleagues (as happened in the study by Söderman and Rosendahl) or visiting relatives or interpreters (Bhattacharyya and Benbow 2013).

However, communication is more than mere verbal exchanges. Small et al. (2015 cited in Plejert et al. 2017) emphasise the importance of ‘embodied conduct’ (e.g. pointing, the use of gaze, touch, body-contact, helping a person stand up, walking with them etc.) in developing positive affective relationships and in promoting independence. There are, however, limits in the sense that professional carers may be aware of the importance of verbal and non-verbal communication but still have difficulty managing some situations because they perhaps pronounced a word wrong or did not understand something that was said. This is similar to the problem sometimes experienced by migrant care workers. In many cases, it is not as important what is said but rather how it is said or how a person is received and this can again be communicated through non-verbal means such as gaze, turn-taking and facial expression (Plejert et al. 2017). Non-verbal communication is also particularly important in view of the fact that some people lose the ability to speak and understand their mother tongue.

Food and drink

Food and drink can be seen as having practical functions (i.e. to nourish the body and sustain life) but also as being linked to certain religious requirements, having a social purpose and affecting wellbeing. Religious requirements differ considerably from one religion to the next and also within certain minority ethnic groups (which sometimes consist of groups of people from different religions). With regard to such requirements amongst members of the South Asian community in the UK, for example, Rauf (2011) explains:

“Muslims for example eat only Halal meat, with the prohibition of pork in any form. They will also not drink alcohol. Sikhs on the other hand may well choose to eat meat, but not Halal meat. Hindus are almost always vegetarian, with a large majority being vegan. Not only will Hindus not eat meat, but cows are sacred in their religion” (Rauf 2011, p.12).

Aside from their religious justification and significance, the key differences between dietary requirements in different religions are about which foods are allowed, which are not and how animals should be slaughtered (the Islamic requirements are called Halal and the Jewish requirements are called Kosher)[1]. In some religions there are periods of religious fasting, the most well-known perhaps being Ramadan. However, Ramadan is not just about fasting. It involves strict fasting from dawn to sunset but also a period of prayer and reflection, self-control and thinking about others. To prepare for the fast, Muslims eat a pre-dawn meal of power foods to get them through the day.

Religious dietary requirements may differ geographically and change over time. In the Eastern Orthodox, Roman Catholic, Anglican and Methodist traditions, there is a tradition of Friday fasting. This consists of fasting or not eating meat on Fridays, often resulting in people eating fish on Friday. In the last few decades, Friday fasting has become less common, often being restricted to the period of Lent. In England and Wales, however, in 2011 the Bishops’ Conference sought to revive this tradition (Oddie 2011), which emphasises the possibility of religious traditions fluctuating over time.  

To respect cultural and religious dietary requirements, it is therefore important to make an effort to understand everything involved so that they can be practiced in a meaningful way. People with dementia themselves may at some point forget certain requirements but, in keeping with what has always been important to them throughout their lives, might appreciate support to be able to continue to practice them. This is in keeping with Dworkin’s ‘integrity’ view of autonomy which emphasises the importance of critical interests (Alzheimer Europe 2009). These, in contrast to experiential interests which are things that people do just because they like doing them, are about interests which are deeply meaningful. They reflect critical judgements that were made and are the kinds of things that make people think, had it not been so, their life would have been worse or wasted (e.g. having a close relationship, accomplishing a particular task or fulfilling a duty). Most religions are quite tolerant towards people who are unable rather than unwilling to fulfil their religious obligations. Nevertheless, professional carers can play an important role in helping people with dementia to keep up their religious practices (e.g. regarding food and drink) if they so wish. It may be necessary to consult families, if available, and local religious leaders to clarify certain issues if information is not readily available.

Professional carers should also try to understand traditions surrounding the way that food is served, how it is offered as a display of hospitality and whether it is customary for families to prepare and eat food together. Rauf (2011) comments on the way that older South Asian people can sometimes be quite pushy in offering refreshments and explains that this is a sign of hospitality. People with dementia from a wide range of ethnic groups may have traditions surrounding food and hospitality and few opportunities to engage in them (e.g. towards visiting relatives and friends), especially in residential care settings where access to food and drink may be controlled by staff. There may be certain constraints affecting what professional carers can do but staff need to have an understanding of the social or relational function of food amongst people from different minority ethnic groups and try to support them to maintain their customs and traditions surrounding food.

Finally, food can be enjoyable and contribute towards quality of life. People from minority ethnic groups in residential or day care should have the same right to good food as those from the majority ethnic group. In a qualitative study of people with dementia from the Sami community in Norway (Hanssen 2013), nurses commented on the positive impact on residents when traditional Sami food was served and regretted that this only occasionally happened. In the Swedish study mentioned earlier for Finnish-speaking residents, the Swedish-speaking/bilingual home only served traditional food on special occasions and managed this through a large-scale catering company, whereas in the home with Finnish-speaking staff, several traditional meals were cooked and served by the staff every week and staff felt that residents ate more when given a traditional meal. Yet another approach is to regularly order in food for residents from minority ethnic groups (e.g. a Chinese or Indian take away) (APPGD 2013). There are some good examples of care providers being creative in finding solutions to provide people from minority ethnic groups with traditional food that they enjoy, but when it comes to religious requirements, this is perhaps not sufficient. Talking about different specialised homes for Jewish people in the UK, a Jewish carer stated:

“Because if you don't fit into Beenstock and you don't fit into Heathlands, you have to go to one of the other homes which… It's difficult to organise Kosher food and prayers and… So, that is a big hole” (Ahmed et al. 2017, p.35).

Appearance and dress

Some people from minority ethnic groups wear traditional clothing on a regular basis. Others choose to dress in the same way as people from the majority ethnic group. There are many forms of traditional dress worn by people from minority ethnic groups in everyday life. Examples include the traditional long heavy dresses worn by Roma women in Finland and the salwar karmeez (worn by Sikh and Pakistani Muslim women), saris (worn by Bangladeshi, Hindu and Muslim women) and turbans (worn by Muslim and Sikh men). Some of these garments, and the way they are worn, are linked to religious requirements whereas others reflect geographical or historical norms (Rauf 2011). For some women, it is important that the clothes they wear cover their head or body. Many Muslim women, for example, wear Niqab, Burka and Chador, in keeping with Hijab, an Arabic term which means to put on, to cover or a curtain, veil or covering, symbolising a modest dress code. Doing so is often an assertion of religious and cultural identity (Soni 2013).  

It is important that people with dementia from minority ethnic groups are given the opportunity to dress in a way that reflects their religious and cultural identity as well as their personality. Professional carers should be familiar with and respect each person’s preferences, and when necessary help the person to dress appropriately. They should also be aware of religious and cultural traditions linked to personal grooming and washing, and of personal, symbolic items that people may wish to have on them at all times (e.g. certain items carried by some Sikh men).

Twigg (2010) is critical of the emphasis on physical comfort in many residential homes, on clothing restrictions linked to laundry requirements and on the frequent problem of residents ending up wearing other people’s clothes. As Twigg points out, comfort in dress is a complex and socially determined concept but all too often, it is more about convenience for staff than the wellbeing of residents. There is a certain comfort derived from feeling socially presentable. Sitting around in ‘comfortable’ loose fitting clothes does not necessarily provide that comfort. The Roma women in Finland, for example, still wear traditional heavy velvet skirts, which are known to be damaging to their health (leaving traces on their hips and internal organs). They are probably far from comfortable but the skirts are a big part of the Roma women’s identity (Jaakson 2018).

Twigg (2010, p.6) argues in favour of the continuing relevance of clothing for people with dementia. Speaking about clothes, she states:

“They represent a continuation of cultural and personal traditions; they are located in social relations that respond to and acknowledge the clothed self, and in which the person is directly embedded, in the sense of being the wearer and bearer of clothing; and they form part of the continuing narrative of self through which the people express their position within particular social worlds.”

This may be particularly important for people from ethnic groups with very different dress codes for whom not being able (and not being assisted when necessary) to dress as they wish may be particularly disturbing for them (e.g. when clothes get mixed up or people don’t have the chance to choose what to wear and end up wearing clothes they find embarrassing or out of character). Encountering one’s relative with dementia in someone else’s clothes can be disjunctive and distressing, threatening the sense of continuity of self (Twigg 2010).

Religious obligations

Many people with dementia from minority ethnic groups will wish to continue practicing their religion by praying, attending a place of worship or taking part in various religious festivals. Consequently, there may be certain times and dates when it would not be convenient to receive care services (Rauf 2011) and others when culturally appropriate support would be particularly welcome (i.e. to promote social inclusion). In some minority ethnic communities, it may be problematic for people with dementia to continue attending their place of worship. Depending on the level and nature of their dementia, there is a risk that they might disrupt the service, not be able to join in communal prayer and perhaps fail to respect certain religious requirements.  Sometimes their families will try to stop them attending in order to save face, preserve their dignity or protect their standing within the community. The extent to which a person with dementia is encouraged and assisted to continue attending public places of worship and engaging in communal prayer may be partly influenced by the family but also the spiritual leaders of a particular place of worship.

Cognitive abilities tend to be highly valued by members of the ultra-orthodox Jewish community and cognitive decline likely to result in loss of family honour. However, the Alzheimer’s Society of Israel was successful, together with ultra-orthodox care services and rabbis from the community, in changing attitudes and improving awareness and knowledge about dementia. As a result, men with dementia now often continue to go to the synagogue and engage in communal prayer (a capacity which is often retained when others have already been lost) (Golan-Shemesh and Lahav 2018). Respected people may still be hidden though in order to protect their honour, so attitudes have not completely changed. Nevertheless, this emphasises the importance of creating links with spiritual leaders as a means to gradually change perceptions of dementia and promote social inclusion.

In the case of services and care provided in the person’s home, health and social care professionals should understand that they might be asked to respect certain traditions such as taking off their shoes on entering a person’s home. This is because in some religions, it is common to have a place of worship in the home. Walking around a person’s home with outdoor shoes on would make it unclean. Professional carers who provide services in a person’s home should also consider the way they dress and whether this might be considered offensive to service users from some minority ethnic groups (Rauf 2011). Continence problems may also result in the home being considered as unclean and interfering with home prayer (Bowes and Wilkinson 2003), which might also disrupt family life and lead to embarrassment.

A safe and stable environment

Intercultural care and support should provide people with dementia from minority ethnic groups with a feeling that they are in a safe and stable environment. Being amongst people who speak and understand a person’s language is likely to be important. At the most basic level, people need to feel able to summon assistance in case of perceived danger and to understand what is being said around them. This applies to people with dementia (whose possible difficulties with language and communication would be exacerbated by being in a situation in which they were not proficient in the language) but also to carers trying to make sense of various care situations and options, and needing to communicate with care staff. To some extent, the perception of being in a safe place or in a trusted environment is based on a subjective feeling, to some extent it may be more tangible. The ability of professional carers to establish a good relationship with their clients from minority ethnic groups is important. Söderman and Rosendahl (2016) emphasise the importance of language in creating a good relationship between professional carers and people with dementia, pointing out how the lack of a common language can lead to misunderstandings and minor issues being blown out of all proportion resulting in anger, frustration and aggression. Such incidents may be unpleasant for those involved but also create unease amongst fellow residents.

A lack of traveller sites with adequate facilities may result in people with dementia and carers from those communities having difficulties with laundry, bathing, toileting and continence care (DAA 2018). Services aimed at providing assistance in these areas for the majority ethnic group are likely to be wholly unsuited to the traveller community and require more than a minor adaptation to make them culturally appropriate. Another problem for traveller communities is that people with dementia may be at greater risk of getting lost in unfamiliar surroundings, sometimes in areas where metal is being recycled. The perceived or real prejudice of nearby inhabitants may result in travellers not seeking outside help in such cases. It seems likely that various assistive technology devices might be useful in this context and there are various systems in place in some areas of Europe to facilitate the work of the police in finding people with dementia rapidly when they get lost. However, it is not known whether people from traveller communities would be informed about or entitled to AT devices and some travellers may be hesitant to initiate contact with the police or the local authorities (e.g. based on a past negative experience or anticipated discrimination).

Reminiscence and possible trauma

Reminiscence work is often considered helpful as a means to understand a person with dementia. However, according to Ahmed et al. (2017) national historical and cultural reference points tend to be used which may make it inappropriate for people from minority ethnic groups unless suitably adapted. It has been suggested that the use of life stories and family biography workshops may help healthcare professionals to learn about the unique individual in the context of that person’s experience within a particular minority ethnic group (Jutlla 2015), to see “the person beyond the dementia” and to consider people “as part of a family history” (Grøndahl et al. 2017, p.9).  

Some researchers emphasise the importance of understanding a person’s individual experience of migration and where appropriate of settling into a different culture, particularly as this may be relevant to that person’s expectations and attitudes towards receiving care and support. The issue of possible trauma needs to be considered though. There are many refugees in Europe who have recently experienced trauma as well as people from minority ethnic groups who experienced trauma when they were younger (e.g. survivors of the Holocaust, people who lived through the India-Pakistan Partition and people who experienced childhood sexual abuse) (Birchard 2009, Herz 2017, Doshi and Mehdi 2017). The experience of trauma is not limited to people from minority ethnic groups but it may be more common amongst older people who originate from certain countries and have lived through periods of conflict. 

Dementia will hopefully be diagnosed at an earlier stage amongst people from minority ethnic groups as progress is made developing culturally-appropriate assessment and diagnostic tools. Consequently, in the next few decades, there may be increasing numbers of people living with dementia with a history of trauma which professional carers will need to deal with. It might not always be necessary to know all the facts about what happened. It may sometimes be sufficient for professional carers to realise that they are not necessarily doing something wrong, to understand what is going on and why somebody might be behaving in a particular way, to be empathic and to be willing to listen if a person wishes to talk about their experience

End-of-life care

Very little research has been carried out into the needs and wishes of people with dementia (and their families) from minority ethnic groups living in Europe regarding end-of-life care, and of their knowledge and awareness of palliative care services at the end of life (Koffman 2018). Research has been conducted in non-European countries, particularly in North America, which provides valuable insight into certain issues, but the findings are not necessarily representative of the situation experienced by people from minority ethnic groups in Europe. A few general findings which might nevertheless be worth considering when developing and delivering end-of-life care include the need to pay attention to equity in referrals for palliative care, to awareness about and the use of advance directives, to issues related to the assessment of pain, including communication issues and cultural attitudes towards the experience of pain, to cultural variation in attitudes towards autonomy in end-of-life decision making and to understanding attitudes and decisions related to the use of life-sustaining treatments (Koffman 2018).  People may also have concerns about the period after their death. Some older people from the former Soviet Union, now living in Finland, who are reliant on their families in the former Soviet Union for support, worry about where they will be buried, who will look after their graves and how to avoid this task becoming a burden to their relatives (Heikkinen and Lumme-Sandt 2013). (Heikkinen and Lumme-Sandt 2013).

Some information is available about religious practices and beliefs, as well as traditions, which are common amongst different minority ethnic groups in Europe but these are not directly linked or limited to the situation of people with dementia. They may nevertheless contribute towards increasing awareness and cultural sensitivity amongst health and social care providers.  For example, information was provided, in the context of a project called “Demenz und Migration”[2], which highlighted several rituals and practices commonly followed by Turkish Muslims living in Germany. Examples include relatives deciding whether to contact an Imam[3], praying together for the dying person, watching over the person’s body after death, communicating the death by word of mouth, sometimes followed by an announcement in the newspaper, and organising a big prayer ceremony 40 days after the person’s death. Details are also provided about various rituals surrounding the preparation of the body of the deceased.

In a UK project, cultural beliefs and taboos surrounding death and dying were reported amongst people from African and South Asian (mostly Punjabi Sikh) ethnic communities (Smith, Moreno-Leguizamon and Grohmann 2015). Some members of the African community were reluctant to talk about death. It was a taboo subject linked to fears about “inviting” death. The same reluctance was noted in relation to discussions about making a will amongst some members of the South Asian community. Many from both communities declared that they would want to return home to die or to be buried in the country of their birth. Differences between people from the Sikh and Muslim faith were described surrounding the ritual bathing of the body, including the respective roles of men and women. Members of both communities seemed to have a limited knowledge about what palliative care is. 

It is common amongst some minority ethnic groups (e.g. within some traveller communities and some Muslim communities) for large numbers of the close and extended family, including children, as well as members of the wider community, to call or visit the dying person in hospital as a sign of respect or as part of a religious duty[4] (Smith, Moreno-Leguizamon and Grohmann 2015, Baktit Abbasi 2018). Within some traveller communities it is also common to cover mirrors when a person is dying and to light a fire outside when the person has died (Smith, Moreno-Leguizamon and Grohmann 2015). Rules and regulations often interfere with members of these communities respecting their customs and this may sometimes lead to situations of conflict with professional carers and with other residents in the hospital.

In some minority ethnic groups, there may also be cultural differences linked to beliefs about the purpose of end-of-life care. De Graaf et al. (2012) found that Turkish and Moroccan minority groups in the Netherlands considered disease and dying as family issues and that relatives often expect doctors to try to cure patients until death, which may clash with doctors’ aims to promote quality of life.

It is beyond the scope of this report to cover the customs and practices of all the minority ethnic communities and the rituals and beliefs associated with all religions. At the same time, even if it were possible to do so, this would not guarantee intercultural end-of-life care and support. Such information can be extremely helpful as a means to improve intercultural awareness and as a broad guide for health and social care professionals. However, the needs and wishes of the individual are paramount. The period surrounding death calls for great sensitivity to religious practices and rituals. However, as pointed out by Koffman (2018),

“Formal religion is a means of expressing an underlying spirituality, but spiritual belief, concerned with the search for existential or the ultimate meaning in life, is a broader concept and may not always be expressed in a religious way.”

Koffman warns against approaches which more or less focus on facts or ‘recipes’ for the experience of death and dying across different faiths, pointing out that there are significant differences between different branches of most religions (e.g. between Orthodox and Liberal Judaism or between Anglican and Pentecostal Christianity). A broad knowledge and understanding of different religious and spiritual beliefs and practices would nevertheless provide a solid basis for such a personal enquiry.

[1] A table providing a brief overview of religious dietary restrictions is available at: https://www.chapman.edu/campus-life/fish-interfaith-center/_files/religious-dietary-restrictions.pdf

[2] For more information (in German) please see: http://www.demenz-und-migration.de/kulturelle-besonderheiten/islam-und-tuerkei/

[3] The imam is a leadership position in some branches of Islam. A person is hired or selected by members of the community. Sometimes this person has had special training, but this is not required.

[4] See also section on Carers from minority ethnic groups.


Key points

  • Intercultural care and support promotes awareness of and respect for cultural difference. However, people from different ethnic groups also have a lot in common and are individuals in their own right. Culture needs to be recognised but should not overshadow recognition of people’s individuality.
  • It is important, especially in the context of dementia care, for people to be able to communicate in their own language. However, non-verbal communication (e.g. touch, tone of voice, body language etc.) is also important.
  • People from minority ethnic groups may have dietary requirements which are sometimes influenced by religious beliefs and traditions. Food can also be a source of pleasure and serve a social function. Not having access to familiar food may have a negative impact on people’s perceived quality of life.
  • Appearance/dress often reflects a person’s personality as well as their cultural and religious identity.
  •  The importance of clothing is often underestimated (e.g. in residential care homes where the main concern is sometimes linked to ease of dressing, assumed ‘comfort’ and washing of clothes). For people from some minority ethnic groups and their families not being able to dress in a culturally appropriate manner may be disturbing.
  • For many people from minority ethnic groups, religion is an important part of their lives. They may wish to practice their religion by praying alone or with others and to take part in religious festivals.  They may eventually need support to do so and support from religious leaders may vary.
  • People from minority ethnic groups may appreciate/expect others to observe or respect certain religious practices and traditions (e.g. taking off shoes when entering their home and greeting members of the opposite sex in the appropriate manner).
  • Like anyone else, people from minority ethnic groups receiving care and support for dementia need to feel that they are in a safe and stable environment. Being able to speak and be understood in one’s own language can be helpful in this respect. As dementia progresses, some people revert to the language of their childhood.
  • Sometimes, the physical environment is unsafe and ill-suited for the provision of good quality dementia care (e.g. for people with dementia from traveller and other nomadic communities).
  • Reminiscence work (e.g. involving life stories) may help professional carers to understand people from different ethnic groups as unique individuals and as members of a particular culture. There is a risk, however, of sometimes reviving memories of traumatic experiences which may be difficult to manage.
  • Cultural awareness about traditions and practices linked to end-of-life care within different communities is important but only as a basic framework within which to enquire about the wishes, needs and preferences of individuals, their families and close friends.

Recommendations

  • Intercultural care and support should be developed in cooperation with people from the specific communities who currently or may eventually use it.  Basic issues should be addressed such as how to enable people to practice their religion and enjoy culturally appropriate food and activities and how to ensure respect for cultural traditions and customs. The best way to address these issues is likely to differ from one minority ethnic group to the next.
  • People from minority ethnic groups should, to the extent that it is practically possible, have access to health and social care professionals who can speak their mother tongue.
  • Where bilingual professional carers are not available, efforts should be made to learn some of the most commonly used words and to involve visiting relatives, bilingual colleagues and interpreters, both for practical reasons and to communicate an interest in the person receiving care or support. The use of technical communication aids should also be considered.
  • Interpreters should be more readily available and budgeted into the cost of providing intercultural care and support.
  • Key professional carers working with minority ethnic groups should have some training in managing trauma in the context of dementia care (in the sense of protecting the wellbeing of their clients as well as staff).
  • All professional carers (including auxiliary/support staff) should be aware of significant historical conflicts and issues which may have led to trauma amongst people with dementia from minority ethnic groups.
  • Professional carers should try to understand the spiritual and religious needs and wishes of people with dementia from minority ethnic groups who are approaching the end of their lives (and of their families and close friends), and to ask rather than make assumptions about beliefs and practices to which they may or may not adhere.
  • Professional carers and service providers/commissioners should seek feedback from people with dementia and carers from minority ethnic groups about services and support, and how these do or do not correspond to their needs and expectations.
  • Professionals should be provided with the tools and abilities to support people with dementia and their families at times when the person might no longer wish to adhere to their previous traditions.

 

 
 

Last Updated: Wednesday 08 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
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