Intercultural Dementia Care: What are the different cultural approaches and intercultural care and support to dementia care?

The term “ethnic group” consists of individuals who have things in common—culture, language, religion, society, traditions, values—which make them feel part of a community. These individuals do not necessarily need to live close to one another or even know each other personally. For many of us, ethnicity is a fundamental aspect of our identity—of who we are, what we are, and how we are. It is important to note that ethnic groups are not biologically determined and not everyone who identifies with a particular ethnic group agrees with all of its principles and practices.

As societies become more multi-cultural, individuals gradually adapt to one another’s diverse cultures, traditions, and values, and some examples of this can be seen with fashion, food, language, and music. This demonstrates that ethnic groups are, therefore, formed through an ongoing and flexible process where both individuals and groups adapt to each other without there being a threat to any personal culture, identity, or sense of belonging to a particular group.

The term “ethnic minority group” emphasises that everyone is from an ethnic group and that some of these ethnic groups are smaller or more misunderstood than others. It is more appropriate to use this term as opposed to “immigrant” or “migrant”, not only because these mean different things depending on the country, but also because many individuals from ethnic minority groups have no direct personal experience of migration.

It is a common view in many European countries, including England, that individuals from ethnic minority groups tend to look after their own and do not want support. This opinion, however, might result in healthcare services and healthcare professionals not making as much of an effort to ensure that individuals from ethnic minority groups are aware about services available and how they might access these. This can make it difficult for individuals from ethnic minority groups to seek help.

Cultural traditions of ethnic minority groups surrounding healthcare may sometimes clash with your own expectations and values, and you may find it difficult to understand certain attitudes, behaviours, beliefs, and needs that are common in some minority ethnic groups. You may also find it difficult to accept divisions, such as in gender, or feel frustrated when support and services are not taken up. This might seem to reinforce the belief that individuals from ethnic minority groups look after their own and do not want or need outside help. However, it is more likely that such support and services are not culturally appropriate or sensitive, or that individuals from ethnic minority groups do not know about these services, or that they are entitled to them, or how to access them. Another reason could be that individuals from ethnic minority groups do not want to be seen as incapable or unwilling to care for their loved ones.

One different cultural approach healthcare services and healthcare professionals need to be mindful of is religious and cultural beliefs about duty. Religious beliefs and cultural traditions often play the basis on who makes decisions and who provides care. In some ethnic minority groups, families are considered obliged to take care of an individual who is living with a disability, is ill, or otherwise vulnerable. Sometimes this is linked to the belief that disability and illness happen to those who have done wrong or that they are being punished, and this could be the person living with dementia or one of their relatives. Another belief is that this is a test from God. While this belief is not universal, it may be found within certain religious or cultural interpretations. Either way, the relatives providing care, in which most cases are women, may want to show that they can pass this test or accept the punishment without complaining, and that accepting any outside help may be interpreted as failure or rejection of the test or punishment.

Another different cultural approach healthcare services and healthcare professionals need to be mindful of is the concepts of honour, pride, and shame. The religious beliefs about children’s respect and responsibility for their parents and their care can be sometimes linked to the concepts of honour, pride, and shame. One example of this is that someone who does not provide care when needed may be thought of as bringing shame on the family. There are some cases in which honour and shame have far-reaching consequences on the direct and extended family, irrespective of how close or far away they may live. However, some individuals feel a sense of pride and satisfaction from providing care and fulfilling their obligations.

There are also many from ethnic minority groups who have concerns about the quality of care, and that good quality care can only be provided at home by the family. Those living with dementia and their loved ones from some ethnic minority groups may also worry about the person with dementia not being understood or that the care may not be culturally appropriate. Whereas, living in a safe environment, surrounded by familiar people who speak the same language may be a more solid basis for good care. However, of course, this is not a guarantee of good care, especially if loved ones are struggling without outside support if and when they need it.

It is important to also be mindful that, regardless of religious and cultural beliefs and the concepts of honour, pride, and shame, there are many who consider caring for a loved one, particularly a parent, as an opportunity to repay them for the care they received when they were younger. It is an expression of gratitude, and for some, it is a moral duty. This differs from the attitude that may be more commonly seen amongst majority ethnic groups where people have a right to professional care and that the government has a responsibility to provide it.

In some ethnic minority groups, there is a male relative who may be considered as the spokesperson and the decision maker for the family, and in such cases, he is the key contact person when it comes to asking for help and support. The actual care is often provided by women, though there are a few exceptions, such as providing intimate care of a male relative and reading prayers. This is often linked to traditional gender roles and patriarchal values that are sometimes reinforced by religious doctrines. It is important to ask about the well-being of family members—the care-burden can result in increased isolation which can lead to carers suffering from depression and other conditions—and refer them for support when and where appropriate as the spokesperson may have little idea of the difficulties faced with the hands-on responsibility for the provision of care. Some healthcare professionals may find these practices difficult to accept but the focus must be on providing support and services that are acceptable and culturally appropriate to all concerned and not on trying to change people’s beliefs.

It is also important to be mindful that some women providing care may be reluctant to seek support out of fear of being criticised for not being seen as able or willing to provide care and of letting the family down. There are many who find it rewarding to provide care and to receive recognition and praise from their relatives and other members of the community. Some even see this role as a sign of moral superiority. The challenge is to ensure that carers receive support if and when they need it and that they do not wait until a crisis occurs and they can no longer cope.

There will be different attitudes towards caring within each family—between generations to between men and women—people can find themselves caught between seemingly contradictory values, traditions, and responsibilities. Some have found solutions, such as sharing care whereby the person with dementia lives with a different family member on a rotational basis, but you may need to adapt the support and care you offer to these different ways of organising informal care.

Most individuals living with dementia will need or would benefit from professional care and support at some point, and it is widely accepted this should be person-centred. This means providing services adapted to the needs and wishes of each person with dementia, and these will usually be linked, to some extent, to their cultural, linguistic, and religious backgrounds. A person-centred approach means that every person is considered unique and treated with dignity and respect. Person-centred care and support for people from all ethnic groups requires a proactive and intercultural approach in which cultural diversity is not only accepted but also promoted. This can be achieved through the development of:

• Cultural awareness. This is the knowledge and understanding of differences in culture between oneself and people from other countries and backgrounds.

• Cultural sensitivity. This is the acknowledgment of cultural differences and similarities, and the ability to understand and react appropriately to this without implicit bias, micro-aggressions, and stereotypes.

• Cultural competence. This combines the knowledge of cultural awareness and cultural sensitivity with appropriate attitudes and skills.

Of course, there are so many different cultures and sub-cultures within the United Kingdom that you could not possibly be expected to know about them all—about their beliefs, shared history, traditions, languages, religions, values, and so on—but it is important to make the effort in acknowledging that there are differences and how these may impact a person. Communication is fundamental to creating relationships and providing a sense of security, and to obtain information on key events in a person’s life, however conversations about events from the past can sometimes bring back traumatic memories and emotions, so healthcare professionals need to be sensitive to signs of distress. The aim is for healthcare professionals to get to know those within their care and to ensure that the care or support you provide is in keeping with their needs and expectations.

Additional Notes

• Language barriers and literacy: Language barriers and differences in literacy levels can significantly hinder people from ethnic minority groups in understanding their rights, navigating services, or feeling confident to ask for help. This is particularly important when materials are not translated or culturally tailored.
• Good practice examples: Initiatives such as bilingual dementia navigators, culturally specific day centres, and Dementia Friends sessions tailored for different ethnic communities are examples of culturally responsive approaches in practice.
• The Equality Act 2010: Under this legislation, care providers have a legal duty to eliminate discrimination and promote equality. Ensuring culturally appropriate dementia care supports compliance with this legal framework and enhances outcomes.