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Challenges

Support and care


Challenges related to the uptake of services and support by minority ethnic groups

A diagnosis of dementia should enable people from minority ethnic groups to access care and support. However, minority ethnic groups are less likely to use dementia services and social care services in general compared to majority ethnic groups and may in addition present later to services (APPGD 2013, Segers, Benoit, Colson, Kovac, Nury and Vanderaspoilden 2013, Greenwood et al. 2015, Jutlla 2015, Mukadam et al. 2015, Hailstone et al. 2016, Pham et al. 2018). Although in some countries, many are registered with GPs, they do not necessarily access dementia services (Shah 2007). In the Nordic countries, especially in Finland, very few older people from minority ethnic groups live in care homes (Söderman and Rosendahl 2016, Stevnsborg, Jensen-Dahm, Nielsen, Gasse and Waldemar 2016, Sagbakken et al. 2018), although an increase is likely in the coming years. Several reasons have been put forward to explain the late or reduced use of dementia services amongst minority ethnic groups. Some of these are discussed below.

Lack of post-diagnostic support

Ideally, every person diagnosed with dementia should receive post-diagnostic support. In its local delivery plan (LDP), the Scottish Government (2018) declares its commitment to offering people newly diagnosed with dementia a minimum of one year's post-diagnostic support, coordinated by a named Link Worker.The aim is to enable people with dementia and their families to better understand and adjust to a diagnosis, connect better and navigate through services and plan for future care including anticipatory care planning. A systematic review carried out by Parveen (2018) revealed a complete lack of research covering post-diagnostic support of people with dementia from minority ethnic groups in the UK. Considering that there is a substantial body of work that has been carried out in the UK into intercultural care and support for people from minority ethnic groups and that the concept of post-diagnostic support exists in the UK, this is a worrying lack which is unlikely to be much better in other countries and which needs to be urgently addressed.

Lack of trust in the healthcare system

As with initial help seeking, lack of trust in the healthcare system affects the use of services (Ahmed et al. 2017). Jolley et al. (2009) found that carers from African Caribbean and South Asian communities in the UK doubted the capacity of mental health services to address language barriers and cultural differences and feared that they would be culturally stereotyped. Distrust of the healthcare system has also emerged in studies involving African Caribbeans and South Asians (Bhattacharyya and Benbow 2013) and involving members of the Chinese community in the UK (Truswell et al. 2015), as well as amongst the Norwegian-Pakistani community, perhaps according to Næss and Moen (2015), based on their earlier experience of prejudice and discrimination. Some people from traveller communities have expressed fear about being taken away to a home (‘locked away’) and being forced to curtail travelling (Dementia Action Alliance 2018, Rattigan and Sweeney 2018). Fear of help seeking resulting in institutionalisation has also been expressed by some South Asian carers in the UK (Mukadam et al. 2015).

Some degree of mistrust and perceived discrimination may be linked to cultural and linguistic issues which result in a person misinterpreting the way they are treated. They may be unfamiliar with the healthcare system and have difficulty understanding the role of different healthcare professionals and what to expect from them. For example, they may fail to understand why they cannot see a specialist directly (without having to pass through a GP, why they are left to wait for 4 or 5 hours in the emergency department of a hospital and then sent home after a brief exchange with a doctor, or why people who arrive at the GP surgery after they do, see a doctor first (possibly due to triaging systems). Such experiences may leave people feeling disempowered and alienated from the system (Cally et al. undated). Some of the negative feelings about being unfairly denied certain services and support may be linked to earlier experiences of prejudice and discrimination (Jutlla 2015).

Discrimination and prejudice against people from minority ethnic groups does nevertheless still happen (APPGD 2013). Many older Irish people with dementia, for example, experienced considerable prejudice, open hostility and discrimination following migration to the UK. Although this is fortunately less common nowadays, many still complain about stereotypes held by healthcare professionals (e.g. that regardless of the illness, alcohol is the problem) (Tilki et al. 2010).

Services not considered appropriate

Dementia services that are available are often not used by people from minority ethnic groups to the same extent as by the majority ethnic group, which means that the needs of the former may go unmet (Daker-White et al. 2002). People with dementia and carers from minority ethnic groups often complain of a lack of choice (Kenning et al. 2017) and some assume that services and support will not respect their culture and religion, and that there will be no linguistic support (Bhattacharyya and Benbow 2013). This is sometimes the case. In some communities, services are considered inappropriate because they do not respect cultural or religious norms such as it not being considered appropriate for someone of the opposite sex to provide personal care and same-sex carers not being available (Kenning et al. 2017, Golan-Shemesh and Lahav 2018). According to Rattigan and Sweeney (2018), a significant number of people from traveller communities (in the UK) would not even attempt to access support for a person with dementia based on the assumption that the support offered would not be culturally appropriate. The kinds of services that people from some minority ethnic groups would most appreciate (e.g. day and night sitting services) are often not available (Beattie et al. 2005) or do not correspond to a person’s interests and way of life.

Group discussions involving people with dementia, carers and members of the general public in the UK from Indian, African Caribbean, and Eastern and Central European communities revealed a heavy reliance on support from relatives, social workers and GPs. They also had a distinct preference for services and support provided by third sector organisations such as charities, local day centres and churches. Parveen et al. (2017), who conducted this research, suggest that such organisations might be more readily trusted and better able to meet the cultural needs of the local minority ethnic communities (Parveen and Oyebode 2018).

Language-related issues

Language-related issues for people with dementia and carers

It is sometimes difficult to navigate the healthcare system in one’s own mother tongue. Trying to do this with limited knowledge of the system and the language can be a significant barrier (Kenning et al. 2017). In some countries, materials might be available and bilingual staff or interpreters, but this is often not the case or has to be organised in advance. People from minority ethnic groups may fear or just assume that no one will speak their language (La Fontaine et al. 2007). Difficulties with language have been found to be related to limited use of home care services (Denktas et al 2009) and to a perceived lack of power to insist on one’s right to support. Jutlla (2015) provides the example of a Sikh male carer who linked failure to obtain certain support to being uneducated and illiterate, comparing his own situation to that of middle class, educated people who can obtain information (e.g. in leaflets that are available) and use it as means to obtain the same services that he is refused. 

It has already been mentioned that in some ethnic communities, there is no awareness of and sometimes even no word for dementia. The same applies to the term ‘carer’. In some languages, such as Bengali, Gujarati, Urdu and Punjabi (Greenwood et al. 2015) and Russian (Jaakson, Hemmilä and Jaakkola 2017), there is no word for carer, which may result in carers not realising that support is available for them and not being able to relate to information about available support. For some, what others would call being a carer is simply seen as an extension of an existing responsibility to care for a relative with dementia[1] (Adamson and Donovan 2005, Lawrence et al. 2008, Rauf 2011, Jaakson, Hemmilä and Jaakkola 2017, Rattigan and Sweeney 2018). Some people are reluctant to label themselves as a carer, stating that it is “a huge step and shifts the dynamic in the relationship” (Ahmed et al. 2017, p.46). They may also consider the concept inappropriate as (almost) everybody in their community acts as a carer for somebody else (Groen- van de Ven and Smits 2009).

Financial barriers

Many people from minority ethnic groups have a lower socio-economic status than people from the majority ethnic group. In countries where healthcare is free at the point of delivery or covered by health insurances, small costs linked to accessing services may sometimes be overlooked. However, for people who are on a low income and struggling to make ends meet, having to use the telephone to make appointments or to pay for public transport to get to a day care centre or for petrol and parking to attend memory clinics, may be enough to deter them from using services. People may also be afraid of having to sell their homes to pay for residential care or losing their social security benefits (Ahmed et al. 2017, Pharos 2018).

Stigma

Diagnosis may open the door to support and care but benefiting from this often means letting other people know that a person or one of his or her relatives has dementia. Stigma deters people from some minority ethnic groups from using services associated with dementia (Mackenzie 2006, Rauf 2011, APPGD 2013, Antelius and Kiwi 2015, Jutlla 2015, Kenning et al. 2017). Some feel that there would not be as much stigma in their home country (Mukadam et al. 2015), while others clearly state the opposite. In some countries, such as South Africa, for example, it is quite common for people with dementia to be considered as witches and to be excluded from society, persecuted and even killed (Mkhonto and Hanssen 2017).  Some researchers also report that dementia is considered a stigma in Arabic-speaking Eastern Mediterranean countries, where the term for dementia is ‘Kharaf’, which means ‘unravelled’ or ‘lost in his/her mind’ (Cipriani and Borin 2014, Yaghmour, Bartlett and Brannelly 2018). Stigma is a powerful and complex social phenomenon which can interfere with people seeking diagnosis, subsequent support and care, and to them hiding the person with dementia from other people out of fear of what people might think of them. In the general literature on stigma, the emphasis is very much on a personal attribute that is socially salient (Goffman 1963, Jones et al. 1984) and leads to negative labelling and stereotyping, cognitive separation (‘them’ and ‘us’), devaluation and discrimination, all within the context of unequal power relations (Link and Phelan 2001 and 2006).

Within many minority ethnic groups, the social saliency of the stigma is mainly linked to dementia being perceived as a mental disorder or a punishment from God (and hence shameful), and the stigma may sometimes be extended to other members of the family (which is known as courtesy stigma or stigma by association). In some minority ethnic groups, it may be another member of the family who is believed to be the one who is being punished by God. In their study into the experience of dementia across ethnic groups, Lawrence et al. (2011) found that some men with dementia from the South Asian community considered dementia as threatening their position within the community but not within the family where the emphasis was on a collective identity. The stigma may also be attributed to the whole family, as a unit, based on their perceived failure to fulfil their religious or cultural duties to provide care for a dependent relative (see next sub-section on filial piety/responsibility).

The issue of responsibility for the stigmatised attribute and subsequent blame is central to some theories of stigma (Jones et al. 1984, Weiner et al. 1988, Stangor and Crandall 2003), with lack of perceived responsibility being linked to lower levels of stigma (Kurzban and Leary 2001).  Perceived responsibility of people with Alzheimer’s disease[2] has been found to be low or moderate in several quantitative studies involving majority or non-specified ethnic groups (e.g. Cohen et al. 2009, Crisp 2004, Werner 2005, Werner 2008) but beliefs about personal or family responsibility for dementia may be one factor resulting in higher levels of stigma in some minority ethnic groups.

Filial piety/responsibility

Power relations and responsibility for care

In some minority ethnic groups, especially African, Middle Eastern and South Asian, male relatives are considered as the decision-makers and ‘spokesmen’ for the family and therefore decide whether and how to access support services. The actual physical/hands-on care is provided by women, usually wives, daughters-in-law and daughters (Rauf 2011, APPGD 2013). Female members of the household may make a lot of the decisions which precede the involvement of the male members of the household (Rauf 2011).

There are differences between minority ethnic groups with regard to which person (i.e. which woman in most cases) should provide care. Botsford et al. (2011) found a greater expectation amongst Greek Cypriot communities for daughters to provide care than within the African Caribbean community. In the Turkish and Moroccan ethnic groups in the Netherlands, it is usually the eldest daughter or the wife of the eldest son who provides care whereas in the Surinamese Creole group it is usually a daughter but not necessarily the oldest (van Wezel et al. 2018). Turkish or Moroccan men in the Netherlands do not generally provide physical care but when they do, it tends to be a man from their own family line such as a father or uncle.

There are several ethnic communities in Israel and differences with regard to who provides care and who makes care-related decisions (Golan-Shemesh and Lahav 2018). In the ultra-orthodox Jewish community, for example, the entire family takes responsibility for care. The primary care is mainly carried out by female members of the family, but male members of the family will often provide personal/intimate care for male relatives and take them to the synagogue. There is a strict separation between men and women within the orthodox community. In the Druze community, women also have main responsibility for care but with some gendered division of responsibilities in that daughters care for their mothers, whereas sons may provide some care to their fathers (intimate care and helping the relative to fulfil his religious duties). In the Arabic Muslim community in Israel, daughters, especially if single, care for their parents and the oldest son is responsible for healthcare decision making.

It has been noted in research carried out in Finland that intergenerational relationships are particularly important in the everyday lives of older migrants from the former Soviet Union. These relationships provide a feeling of safety and wellbeing, helping compensate to some extent for the social and emotional exclusion that some experience in their host country (Heikkinen 2011).  A similar phenomenon may also occur in relation to older people who move to another country in Europe when they retire.

Women from minority ethnic groups who have been given sole responsibility for the care of a person with dementia often struggle to cope. Some may be angry about having been given this responsibility (Ar and Karanci 2017).  They may, however, hesitate to ask for professional help for fear of criticism that they are unable to fulfil their role, of angering other members of the family or of being excluded because “only bad women complain” (Tonkens, Verplanke and De Vries 2011).  This may sometimes be balanced by the satisfaction that providing care brings in terms of recognition and praise from other members of the family (Van Wezel et al 2016). However, cultural perceptions of care responsibilities often result in women from minority ethnic groups caring for people with very advanced dementia with little or no support, and waiting until a crisis occurs or terminal care is required before seeking help (Mukadam et al. 2011 and 2015).

Religious duty

The gender-based power relations in families may also be based on or accompanied by religious beliefs about relatives having a duty to care for their dependent relatives (e.g. within Hinduism, Islam and Sikhism), especially within the South Asian communities in the UK (Rauf 2011) but also amongst Turkish and Moroccan groups in the Netherlands (van Wezel et al. 2016). Some studies have also reported Christian beliefs about caring for older dependent relatives such as in the study by van Wezel et al. (2016) of female Surinamese carers of people with dementia in the Netherlands[3].  The duty to care is in some cases accompanied by the belief that someone has done something wrong and is being punished (as mentioned in the sub-section on stigma) or that they are being tested. Turkish and Moroccan female carers, who were Muslim, interpreted providing care as a test from God, which if successfully accomplished, would pave the way to paradise (van Wezel et al. 2016). The person or family concerned may wish to show acceptance of the test (by being patient and providing the care needed) rather than evidence of failure (by accepting outside help) which would put them at risk of criticism (Rauf 2011).

Criticism and pressure on the female carer normally comes from outside the immediate family (e.g. from the in-laws, the extended family and neighbours as well as spiritual leaders). In some cases, relatives who are not responsible for providing care interpret the need for support not as being related to a person’s increased cognitive deterioration but as the carer’s inability to manage (Sagbakken et al. 2018). Spiritual leaders in some religions may play a decisive role in care decisions. In Islam, for example, Muftis (senior Muslim scholars) can be asked to provide an Islamic ruling on whether it would be acceptable to accept certain support or place a relative in residential care (Mohammed 2017).

It is often assumed that people from certain minority ethnic groups ‘look after their own’ and do not want any support (Moriarty et al. 2011, Ahmed et al. 2017). Those who do seek outside help may have negative experiences because of such assumptions (APPGD 2013). Jutlla (2015) warns against stereotyping people from minority ethnic groups as being oppressed by cultural norms and community expectations. She points out that some carers do decide to face possible criticism and disapproval in order to access support which they feel is justifiable and corresponds to their own personal situation and needs. Some carers and service providers from Chinese and Indian communities expressed the view, when asked about dementia care, that it may not always be practical in the UK for families to maintain the tradition of providing care themselves (in the absence of extended families living together in one house, older people living on their own and children moving away for employment reasons) (APPGD 2013).

Practices linked to the provision of care within the family and the use of outside support may be gradually changing as a result of changing family structures, more women taking up paid employment outside the home and different perspectives on care especially amongst second and third generation groups (Lawrence et al. 2008, Bhattacharyya and Benbow 2013, Golan-Shemesh and Lahav 2018). A Dutch study found that in Turkish and Moroccan communities, families recognised that professional support, including residential care, was sometimes necessary but would only be justifiable in extreme cases (van Wezel et al. 2016). Surinamese Creole carers in the same study considered family care to be better than professional care. They were more inclined to see their role as directing the provision of care, which would ideally be provided at home but if necessary and in the interests of their relative, could include residential care. They did not fear criticism from the family or community for using services and support.

Changing attitudes towards the use of services may sometimes lead to conflict within families, especially between younger and older generations and between male and female relatives. It may, however, also lead to sharing of care responsibilities within the family (e.g. moving the person with dementia between different relatives’ houses due to health problems or work commitments) (Sagbakken et al. 2018).  In the study by Sagbakken et al. (2018), the difficulties managing work and care commitments, within the context of a deep-rooted commitment to provide care at home and a smaller or scattered circle of relatives, were emphasised. Whilst beliefs about religious duty often influence decisions about the organisation of care within families, spirituality and religion are also often experienced by carers as a source of strength and support (van Wezel et al. 2016, Parveen and Oyebode 2018).

The perspectives of people with dementia

The views of people with dementia themselves are often overlooked. Lawrence et al. (2010) found, in the context of a qualitative study involving Black Caribbean, South Asian and White British people with dementia, awareness of the need for support. Some felt that outside support was necessary but undesirable. Some were not sure that support from the family was available or likely to be sufficient over time. Whereas some South Asian and Black Caribbean people with dementia described the provision of care by relatives in terms of reciprocity (their children simply returning the care they had previously received from their parents), most of the White British participants were concerned that they were burdening their relatives and both they and some Black Caribbean people with dementia felt that there were constraints affecting the level of care their children could provide (see subsequent section on reciprocity).

Pride, honour and shame

Religious beliefs about filial responsibility are linked to the concepts of pride, honour and shame, which are themselves interrelated.  A person may, for example, feel a sense of pride, in being able to provide the care and support needed. It brings honour upon the family. Failing to provide care, by contrast brings shame on the family. In South Asian communities, it is often the actions of women that are considered to result in honour or shame on the family (Rauf 2011). Within some minority ethnic groups, honour and shame have far-reaching consequences. As mentioned earlier, knowledge that family has a person with dementia (often perceived as a hereditary mental condition) may affect marriage prospects of younger relatives and even the standing of the wider family which might be living thousands of kilometres away. 

The flip side of the coin is that managing to fulfil care obligations may result in a sense of accomplishment and pride, which can be personally rewarding. Helping others, including people outside of the immediate family, is often highly valued and considered as a means to ensure respect, especially within Christian, Sikh and ultra-orthodox Jewish communities (Lawrence et al. 2011, Golan-Shemesh and Lahav 2018) or to obtain blessings from God (Mackenzie 2006). In Israel, this has led to successful projects involving female volunteers helping provide care in the homes of people with dementia (Golan-Shemesh and Lahav 2018).

Similarly, Black Caribbean and South Asian people in the UK often consider the provision of care as a sign of virtuousness in contrast to many native English carers who consider it restrictive and requiring them to put their lives on hold (Institute of Psychiatry cited in Rauf 2011). In the Netherlands, Turkish and Moroccan carers also saw providing care as a means to acquire respect with the family and community (e.g. from the parents but also from brothers and sisters and the wider community), whereas for the Surinamese Creole carers, such recognition was just from the close family, not the wider community (van Wezel et al. 2016).

Reciprocity

A recurring theme in the literature on care giving traditions is that of reciprocity, namely providing care in recognition of acts of kindness and out of gratitude for having been cared for oneself (e.g. as a child). Mackenzie (2006) found that some Sikh and Hindu carers in her study saw care as a way to repay parents for their previous acts of kindness. In two studies carried out in Norway involving carers having migrated to Norway from Pakistan, Afghanistan, China, Vietnam, Turkey, Lebanon, Sri Lanka and Chile (Næss and Moen 2015, Sagbakken et al. 2018), carers described the provision of care to parents as a moral question and a matter of reciprocating the care they had received as children throughout their upbringing. Female Turkish, Moroccan and Creole Surinamese in the Netherlands expressed similar views (van Wezel et al. 2016). In one of the Norwegian studies, the participants linked the issue of reciprocity to beliefs about normal ageing and the need for tolerance, coupled with hope and some degree of worry about whether their children would do likewise.

“The day will come when also we will be shuffling aimlessly around the house, banging the walls and slamming the doors. I hope that then our children will not be so tired of us that they send us off to a nursing home. I have been brought up to put up with behaviour like this. It is natural that people do these kinds of things when they get old” (Næss and Moen 2015, p1723).

The perceived superiority of family care

Alongside beliefs about the duty to care and paying back older relatives for the care they once provided is the belief that relatives would not be as well cared for by outsiders (e.g. they would not be understood, would not receive individualised care, would not receive enough food and exercise and might even be sexually abused) (Sagbakken et al. 2018).  Reasons for the perceived superiority of family care include claims that it is more loving, offers more security and recognises who the person with dementia is. This is contrasted against negative images of residential care in the media, summarised by a Moroccan carer as being places where people are left suffering, with no contact, just waiting to die (van Wezel et al. 2016). Carers from the Turkish, Moroccan and Surinamese Creole communities in the Netherlands also mentioned family care as providing a familiar and trusted environment amongst people who speak the same language.

Responding to religious, cultural and gendered roles and responsibilities

On the one hand, it is important to respect cultural traditions with regard to power relations and gendered care roles. On the other hand, it is important to consider the physical and mental wellbeing of relatives providing care without any support. One possible approach, suggested by Mukadam et al. (2015), is to reframe outside support as living up to cultural expectations to enable the person with dementia to live as fulfilling a life as possible rather than as relinquishing care. It may also be beneficial to gain the support of spiritual leaders and male members of the communities in which filial piety is a tradition.

Healthcare providers need to be aware of the cultural traditions within some minority ethnic communities to provide care within the family but also to avoid stereotyping and considering this as reflecting the wishes of all members of the community (Turner et al. 2005, Brooke et al. 2018). Moreover, the acceptance of help is not necessarily all or nothing and there may be differences in the kinds of services that individuals and groups consider acceptable. It is also important to avoid assuming that people from minority ethnic groups all have the support of a family. There are also people with dementia, within groups which typically do not use outside support, whose relatives are not willing or able to provide support, who do not have children or whose families were divided when they migrated (Parveen, Morrison and Robinson 2013, Næss and Moen 2015, Sagbakken et al. 2018). Also in the context of working with rather than against traditions, it is important to support women in their role and offer them the possibility to enjoy the same rights and opportunities as other women without challenging their perceptions of duty or of virtue and pride linked to their caregiving activities.

Finally, Næss and Moen (2015) report an interesting practice in the Norwegian-Pakistani community regarding the financial burden on the principal carer, which may arise due to loss of income and the absence of state subsidies. This consists of pooling the pensions of the parents requiring care and support into the family economy. Næss and Moen (2015) point out that all Norwegian citizens are entitled to a standard minimum pension even if they have never been in paid employment. In other countries, where a minimum standard pension does not exist and where this practice is not common, carers may be financially disadvantaged by providing care, through potential loss of income, the costs of any outside help used and lost pension contributions. However, in some countries such as the Netherlands where it is possible to obtain a ‘personal budget’, some minority groups are increasingly using this option as a means to compensate family members for the costs incurred as a result of providing care even though, as mentioned earlier, it can often be difficult to navigate the personal budget system. 

In her evaluation of the impact of religion on dementia care service uptake amongst people from some minority ethnic groups, Regan (2014) suggests looking at how religion could be used to help promote service use.  She describes a two-phase approach: first, to use scriptures and teachings of faith to promote care-giving within members of the community; second, for religious leaders to increase understanding of dementia as a biomedical condition to reduce stigma and promote access to health and social care services.

[1] See sub-section below on filial piety/responsibility.

[2] The studies are about Alzheimer’s disease but bearing in mind the dates of the articles, it is most probable that they are about dementia caused by Alzheimer’s disease (as opposed to preclinical or prodromal Alzheimer’s disease).

[3] These carers were all from the Creole ethnic group. There are also Surinamese ethnic groups in the Netherlands from Hindustani and Chinese communities. They might have different views.


Key points

  • People from minority ethnic groups do not use support and services to the same extent as people from majority ethnic groups.
  • People from minority ethnic groups sometimes assume that available support will not be suited to their cultural needs and preferences.
  • Some fear that nobody will speak their language and they or their relatives would not be able to cope.  
  • In many cases, intercultural care and support services are not available. Where they exist, people do not necessarily know about them or think that they would not be entitled to them.
  • Difficulties with language and lack of knowledge about how the healthcare system works may result in some people not being able or being hesitant to ask about services and support.
  • Many people from minority ethnic groups have limited financial resources and struggle to make ends meet. Even a small cost, such as a bus fare, parking fee or the cost of a phone call (especially if kept on hold for several minutes), may be enough to deter a person from using a service.
  • The stigma of dementia, of mental disorders and/or of the family not providing care may result in people hiding the fact that they or a member of their family has dementia and in not using services and support which they might otherwise find helpful.
  • In some minority ethnic groups, people with dementia are usually cared for by female relatives. In the context of religious beliefs and traditions, it is often considered their duty to care. They may be reluctant to seek outside help as this might be interpreted as a rejection of that duty or as failure to fulfil it, which could be considered as bringing shame on the family.
  • The concepts of pride, honour and shame are interrelated. Fulfilling care obligations can also bring recognition and a sense of accomplishment or pride.
  • Sometimes the tradition of providing care is not directly linked to religion but to values and traditions which reflect the principle of reciprocity (i.e. providing care as a means to repay kindness, love and care previously received oneself).
  • Although women often provide informal care, male relatives may be the official spokesperson for the family. Consequently, women are often not asked or do not have the opportunity to discuss their possible need for support with health and social care professionals or service providers, and their physical and mental health may sometimes suffer.
  • Some people believe that care provided by the family is superior and that provided by professional carers.

Recommendations

  • People from minority ethnic groups should be offered culturally sensitive post-diagnostic support, if at all possible from a person who speaks the language they are most proficient in.  
  • Awareness raising materials should challenge negative stereotypes and address fears that people from minority ethnic groups might have about services and support.
  • Services and support should be presented in the context of ways to provide better care and support rather than as involving handing over or relinquishing care. 
  • Health and social care professionals should seek to establish a relationship of trust and mutual respect with members of minority ethnic groups through the acquisition of cultural awareness and the development of cultural competence. They should be provided with training in providing intercultural care and support.
  • GPs should be provided with the necessary means and support to enable them to take a more active role in ensuring access to intercultural care and support for their patients from minority ethnic groups.
  • Religious duties and traditions may influence attitudes towards the use of services and support but it should not be assumed that people with dementia and families from particular minority ethnic groups do not wish to receive appropriate services and support. 
  • Commissioners (those who are responsible for assessing needs, planning and purchasing health and social care services) should consult and where appropriate work in partnership with organisations which have been successful in meeting the care and support needs of people from minority ethnic groups.
  • Where and when possible, prominent people from the community who have had personal experience with dementia could be encouraged to be spokespeople to help dispel stigma.

 

 
 

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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