Traditionally it has been accepted that due to the concept of ‘familism
’ – the view that the extended family care for older relatives – ethnic minority caregivers were more likely to take on the responsibility of care-giving without external support [11
]. Studies of African-American, Latino and White families found differences in caregiving and family dynamics that would account for this view. An example is a study by Haley et al. who found that white caregivers were more likely to be spouses than other groups, report depression, and view caregiving as stressful compared with African-American caregivers [12
]. Latino carers are more likely to be daughters, whereas amongst the White population spouses provide care [13
]. There is an underlying implication that as care is provided by family members other than spouses in minority groups, there is a greater desire from younger members to help their relatives. This was identified by a UK study by Lawrence et al. who found that participants from South East Asia and Black Caribbean who had traditional views were more likely to view caregiving a positive light [14
]. This study found that service usage was influenced by whether the participants had a traditional versus a non-traditional view of caregiving rather than ethnicity. This was highlighted by the fact that participants from the latter group were more likely to give up their role as caregivers and demand more from services, whereas the former group were likely to be happy with services but overall depended on them less than the former group [14
Taken together, these studies show that there are diverse responses to caregiving are based on the individual traits of caregivers even within the large cultural context and hence a homogenous perspective of caregiving cannot be attributed to ethnic minority groups. Arguably, the invisibility of ethnic minorities and the misperception of ethnic minorities ‘looking after their own’ has contributed to services not tailoring to the needs of ethnic minority service users and may have influenced these carers to carry out caregiving in the community in addition to cultural expectations. It may be that most of the care is carried out in the community, as minority groups also face difficulties when giving care, especially caregivers who do not hold traditional views but have the cultural expectation of providing care.
It is apparent that there are myths surrounding dementia in both minority and majority groups that may hinder service utilisation. This was seen in a focus group of Pacific Islander Americans and Asian participants who viewed dementia as a normal part of ageing which could not be treated or managed and hence people with dementia and their carers did not look for services to help with their needs [15
]. This attitude is also evident in the indigenous populations in the UK where some people refer to dementia euphemistically as having ‘memory problems’ and therefore did not view dementia as a syndrome affecting behaviour and cognition in a progressive and pathological manner [16
]. A study of Chinese and Vietnamese elders revealed that some dementia patients viewed their symptoms as a consequence of migration and cultural shock, which illustrates that whilst dementia is not seen as a normal part of aging there are misconceptions associated with it that may prevent people from seeking medical help [17
]. Furthermore, due to the stigma associated with mental health
services in most communities, people may choose not to access services even after diagnosis of dementia. This was revealed by a report by the House of Commons, which found that the attitude about dementia in UK is extremely negative and akin to the view of cancer
in the 1950’s viewed as untreatable and unmanageable [16
]. The report urges for an open and honest discussion of dementia on a national level [16
]. The studies discussed above also demonstrate that there needs to be more awareness about the symptoms and management options available to people with dementia on a local level which addresses issues or misunderstandings held by ethnic minority groups.
Religious beliefs, which form the basis of cultural views, may impact the perception of disease
, and hence influence whether people access services. As BME groups are heterogeneous there are many religious practices within this population and a systematic review found that most ethnic minority populations in the UK followed non- Christian faiths, namely Islam, Buddhism and Sikhism, although those following the Christian faith were also influenced by their religion in how they approached services [18
]. The review found that religion influenced most of the decision making related to accessing services, in particular religious women were less likely to use in home services compared to non- religious women, this was in part due to the sense that carers had a religious obligation to their care recipient [18
]. Intriguingly the review concluded that religious organisation did not provide support for those struggling to cope due to the stigma attached to metal health, although religiosity was helpful for carers in aiding acceptance of their difficult experiences [18
]. Other factors which impacted service access include the notion that dementia was part of a karmic consequence, punishment or a test from God [18
]. It is important to highlight that whilst these are barriers which could explain why BME patients accessed services later, participants also experienced prejudice from service providers due to their religious beliefs and activities such as praying; therefore, the personal barriers to service utilisation were exacerbated by organisational barriers [18
]. Finally, religion plays a role in the low service use of ethnic minority carers and care recipient; however it is also beneficial for individuals in coping with their struggles. Due to the strong influence of religion there may be a role for religious leaders to be part of the discourse of dementia healthcare.