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Carers from minority ethnic groups

Professional and informal carers

Children and grand-children of people from minority ethnic group often feel as if they were caught between two cultures, being in a kind of mixed culture. A 'cultural mix' may offer some benefits but also lead to certain disadvantages and even dilemmas. Carers of people with dementia from minority ethnic groups may sometimes feel over-burdened and in an awkward position, having to negotiate the demands and expectations of the person with dementia and their relatives on one side with those of health and social care professionals on the other, with their own expectations sometimes being yet different.  

One potential challenge results from different cultural perspectives of health, sickness and care. The tradition within some minority ethnic groups of the family caring for the person with dementia (and looking after his or her every need) does not coincide with the current philosophy of care in many parts of Europe which increasingly seeks to promote remaining capacities and help people to live as independently as possible. This may challenge established cultural understandings of what it means to be ’sick’ and what it means to provide care. Carers may find it difficult to coordinate the family’s cultural expectations with those of the healthcare professionals. 

Many minority ethnic groups are structured around the principles and values of ‘familism’, which emphasises the family as the central unit governing personal and social life and reflects social norms, personal attitudes, and behaviours. Typically, this includes respect for elders, obedience to parents and mutual support (e.g. filial piety), overriding the interests of the individual. In many Western European countries, principles and values reflecting individualism are more common amongst majority ethnic groups. Individualism emphasises individual freedom and autonomy, and on respecting and promoting the interests of the individual.

Through the process of acculturation, some people from minority ethnic groups move on and away from the culture of their parents and grandparents, having had a different life and exposure to different experiences and opportunities compared to their older relatives. As this is a gradual process, however, they may sometimes find themselves in a difficult situation, not feeling comfortable with certain decisions and in certain interactions with members of their family and outsiders.  In Dutch society, for example, a fairly individualistic perspective of health care predominates (a so-called ‘I-culture’ as opposed to the ‘we-culture’ which predominates in many other cultures). According to Baktit Abbasi (2018) the religious duty of Muslims to visit a dying person means that a lot a relatives visit the hospital and hospital staff sometimes find this disturbing. Although cultural awareness raising may help hospital staff to be more understanding when this happens, younger generations from the Muslim community who can see the issue from both sides may feel uncomfortable and isolated, not feeling fully able to identify with either perspective. 

In some families, younger people from minority ethnic groups might be better able to access and act on information, as they are likely to have a better command of the language of the country, be able to use the latest information technology and be familiar with the national healthcare system. Whilst this know-how could be of benefit to the older generations, some cultural traditions may place greater emphasis on respect for older people and on the importance of valuing their knowledge and experience (i.e. whatever Grandpa or Grandma says, holds). This may sometimes bring them into conflict with the wider family and represents lost opportunities to support older relatives. Measures to help bridge this gap might therefore be beneficial in promoting the potential for learning and support within families, without jeopardising cultural traditions based on respect for one’s elders, which is still prevalent in many minority ethnic cultures (Parveen and Oyebode 2018).   

Some carers experience psychological problems years after the person with dementia has died even though appropriate support may have a positive impact on helping them to cope (e.g. to deal with behaviour and symptoms that they find difficult to manage) (Spijker et al. 2009). A greater ‘burden’ has been reported amongst informal carers from minority ethnic groups whose families may have high expectations related to caring for a relative and some reluctance to accept outside help (Berdai Chaouni and De Donder 2016, Parveen and Oyebode 2018). However, according to Parveen, Morrison and Robinson (2013), recent evidence suggests that familism does not always have negative consequences and may sometimes be beneficial to carers. Also, spirituality and religion may help some people to cope with caring. In the UK, spirituality and religion tends to be used more by people from minority ethnic cultures as a means of coping than by people from the majority ethnic group (Parveen and Oyebode 2018).

As mentioned earlier, care is often provided by one person and that person is often a daughter or daughter-in-law. Several key issues linked to lack of use of services were discussed in the section “Challenges related to the uptake of services and support by minority ethnic groups” (sub-sections of filial piety/responsibility and religious duty). That discussion described challenges experienced particularly by female carers. Another issue is that daughters and daughters-in-law who provide care are often younger than carers from majority ethnic groups (who are often spouses or partners). Parveen and Oyebode (2018) describe them as the ‘sandwich generation’ as they are often responsible for the care of older parents as well as children. They may find it difficult to coordinate their jobs and care responsibilities. It is often assumed that people from minority ethnic groups benefit from the support of an extended family network. In some cases, certain care responsibilities may be shared amongst different members of a family. However, there is some evidence of a tendency towards fragmentation of families from minority ethnic groups (e.g. due to changes in immigration laws, the need to move away to find employment and the gradual process of acculturation), which means that family support is increasingly lacking.

Communication with people outside the family is often already hampered by shame (Van Wezel et al 2016). Female carers often feel that they cannot communicate with other members of the family or outsiders (such as their GP) about difficulties coping and about the possible need for help (Tonkens et al. 2008, Tonkens et al. 2011). In addition, assumptions about the existence of support from the family have sometimes led to carers not being offered support (Parveen and Oyebode 2018).

 

 
 

Last Updated: Monday 08 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
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