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Different approaches

Support and care


Different approaches of relevance to the provision of intercultural care and support

Person/relationship-centred support and care

From the 1990s onwards, based on Kitwood’s work, a person-centred approach to care and support came to be recognised as the gold standard in the field of dementia care, gradually becoming more of a basic requirement for good care. In some care settings, the philosophy of ‘person-centred dementia care’ has now become a stated norm for many services, even when it is not entirely clear what standard that implies. Within this approach, the focus is on supporting the wellbeing, dignity and autonomy of the whole, unique person regardless of the extent of cognitive impairment rather than on a collection of symptoms or behaviours to be controlled and rather than assuming that one service will suit everyone.  A person-centred approach therefore benefits people with dementia by respecting their human rights and individuality, and by contributing towards quality of life and wellbeing. However, whilst there is general consensus on the need for a person-centred approach, the actual practice of person-centred care varies considerably (Alzheimer Europe 2015). Many people from minority ethnic groups do not receive timely and appropriate support and care. Attempts to provide person-centred care all too often occur within a framework which reflects the cultural traditions, norms and awareness of the majority ethnic group.

In 2010, the Swedish National Board of Health and Welfare (SBHW) produced guidelines in which it is specifically stated that person-centred care should involve consideration of the different cultural or linguistic backgrounds and needs of people with dementia (Antelius and Plejert 2016). It is further stipulated that respecting cultural needs should be interpreted as “giving persons with dementia disease the opportunity to practice their religion, being served culturally appropriate food, keeping their cultural traditions and customs, and having access to nursing staff that communicate in the same native tongue as the person with dementia”. Linguistic needs were described as being linked to being cared for by nursing staff who communicate in the person’s native language and who also have cultural competence to give people with dementia with a different ethnic background a sense of security, increased well-being and a sense of feeling ‘at home’ (SBHW, 2010:21, based on translation by Antelius and Plejert).     

The term ‘person-centred’ is increasingly being extended to take into consideration everyone involved in the act of giving and receiving care and support. Nolan et al. (2004), have proposed a shift from individualistic notions of person-centredness to relationship-centredness, which is particularly relevant in minority ethnic groups in which the focus is often more on the family unit than the individual[1]. A relationship-centred approach reflects the interdependence between carer and care receiver and the importance of interpersonal interactions in creating a basis for care and support (Walsh and Shutes 2013).

The ability to communicate with others in meaningful ways is part of any person/relationship-centred approach to care. It contributes towards the promotion of autonomy and towards maintaining a person’s sense of self, identity and well-being. Much has been written on the topic of communication in the context of dementia but Plejert, Lindholm and Schrauf (2017) point out that very little research has been done in the area of multilingual[2] interaction and dementia despite the fact that multilingualism is more the norm than the exception in many countries.

Communication should also involve asking people with dementia and their carers themselves about their preferences and involving them in creating culturally appropriate care and support. This should occur on a one-to-one basis but also at the level of small groups in order to help healthcare professionals and service providers develop intercultural care and support that is also appealing to people who are not yet using it. In the Netherlands, for example, Smits et al. (2018) set up a working group of Turkish carers, most them who were daughters of a person with dementia.  Together with the researchers, the carers developed their own criteria for culture sensitive care through co-creation. They then used this successfully to lobby for culture sensitive dementia care in their town. A similar approach could also be used with people with dementia from minority ethnic groups, albeit with some adaptation and appropriate support.

Mainstream or separate/specialised services

Recognising dementia as a potential disability[3] and the importance of a person/relationship-centred approach to care and support should help ensure that everyone with dementia is treated on an equal basis with respect for their individuality and rights. Providing such care and support within the context of interculturalism requires attention to certain challenges but can be achieved in different ways. There is an ongoing debate about whether intercultural care and support for people with dementia from minority ethnic communities should be part of the mainstream provision or separate. The provision of person/relationship-centred care and support should be possible within mainstream care where respect for each person’s language, religion and other cultural needs should be possible.

The issue as to whether services should be mainstream or specific depends on what is considered as sufficient versus merely symbolic or inadequate add-on measures within mainstream care and also whether or not people from specific minority ethnic groups prefer specialised services. In terms of the principle of either approach, Johl et al. (2016) raise the issue of some service providers having concerns, when proposing specialised services for certain minority ethnic groups, about singling out a particular group and of appearing ‘racist’. There may also be differences between first and second or third generation members of minority ethnic communities with regard to the extent to which they are comfortable with the local culture and generic health services (Bhattacharrya and Benbow 2013).

It is sometimes assumed that people from the same ethnic group prefer to use services where they can have social contact with people of a similar age, class, background and ethnicity (covering language, food, music and games) (Beattie et al. 2005). It is important to avoid making assumptions about interactions between people from the same minority ethnic group. Bhattacharyya and Benbow (2013) point out that there are hierarchies and caste systems in some minority ethnic groups. The example given is the South Asian community in the Bradford area of the UK, which is described as being culturally and socially fragmented with divisions based on caste, status, gender and generational hierarchies. Such divisions can be traced back to the place of origin of the first migrants and are reproduced in the current setting.

Some services such as day care centres come to be used predominantly either by members of minority ethnic groups or by members of the majority ethnic group on the basis of living in the proximity. Even when they have been set up primarily for people from a particular ethnic group, people from other groups sometimes attend and fit in well (Beattie et al. 2005). For people who wish to go to a centre where there are more people from their own culture, the overall lack of dementia-specific services, especially in rural areas, may sometimes make this impossible as it would be too far away, making it impractical to get there and for relatives and friends to visit. In the UK, where there is a large ethnic minority voluntary sector, people sometimes prefer to use services provided by such groups, which are not specifically for dementia but which are tailored to their ethnic group (APPGD 2013).

Most probably, the response to the question “should care and support for minority ethnic groups be mainstream or specialised?” is that it depends. As with the development of intercultural care and support in general, it is essential that people from the different minority ethnic groups are involved in discussions about the development of new services and whether existing services are acceptable. There seems, nevertheless, to be a slight emphasis in the literature on adapting mainstream services to make them more appropriate for people from a wide range of ethnic groups. Kenning et al. (2017), for example, point out that the usual approach is to try to tailor existing services to specific ethnic groups (i.e. making mainstream services more inclusive). However, a study by Söderman and Rosendahl (2016), which involved the comparison of two care homes in Sweden with native Finnish-speaking residents, describes the one with native Finnish speaking staff as being superior to the one with native Swedish-speaking and bilingual staff in terms of the perceived impact on residents’ wellbeing. 

[1] Please see sub-section on ‘filial piety/responsibility’ in the section on challenges in Support and Care

[2] The use of more than one language in a given context

[3] Please see the Introduction for more details.


Key points

  • A person-centred approach to care and support is often considered a basic requirement for good care.
  • The emphasis with person-centred care is on the individual and his/her relationship to other people. By definition, this should respect the cultural and linguistic needs of each person (as well as his/her family or network).
  • There is, however, a risk of person-centred care occurring within a framework which reflects the cultural traditions, norms and awareness of the majority ethnic group.
  • Good communication is essential when providing person-centred care but there has been surprisingly little research in the area of multilingual interaction and dementia.
  • The provision of person/relationship-centred care and support should be possible within mainstream care or a specialised separate service.
  • Specialised services might sometimes be preferred because of practicalities (e.g. being able to cater more fully for the dietary requirements/preferences of people from one or two specific ethnic groups and having staff who are fluent in a particular language).
  • On the other hand, many people are used to and enjoying living in multicultural communities and would therefore prefer mainstream services. 
  • There are arguments for and against each approach both from the perspective of service providers and service users. Preferences may also differ depending on the type of support needed, the stage of dementia and the individual concerned.

Recommendations

  • People with dementia and their carers from minority ethnic groups should be directly involved in the development of person/relationship-centred intercultural care and support.
  • Mainstream and specialised intercultural care and support should be developed taking into consideration a range of factors (e.g. the availability of suitable staff, the needs of people from minority ethnic groups, proximity to potential service users and costs).
  • Local, voluntary sector organisations providing generic culturally-sensitive services should have access to training from specialist dementia staff so as to be able to better support people with dementia.
  • Intercultural care and support should be widely available, not just in cities and urban areas but also in rural areas.

 

 
 

Last Updated: Wednesday 10 April 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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