Black and minority ethnic (BME) communities and dementia

More than 40,000 older black and minority ethnic (BME) people live with dementia in the UK (1), in part due to vascular risk factors such as hypertension often found in African-Caribbean and South Asian UK populations. In other ethnic groups such as Irish and Jewish, there is a demographically-older population so with the link between age and dementia, prevalence is likely to be higher. What additional awareness do those working in social care need to have to meet the particular needs of these older people?

For some people, the experience of what it means to live with dementia will be unfamiliar. They may not have seen or cared for someone with dementia in their family if they left their country of origin for work when young, for example. Knowledge of dementia and dementia services is limited in other BME groups (2). For example, in one Chinese community, negative perceptions of dementia resulted from poorly-translated terms which give dementia the meaning of ‘lost intelligence disease’. A perceived or actual cultural bias in assessment tests and diagnosis may limit their value or appropriateness for some BME older people (3). 

Engagement with social and health care services may be resisted by some BME communities because they fear discrimination or they find services are difficult to access. Chinese older people said they feared a relative in care would be the only person from that community and thus be isolated. A delay in seeking support may mean the person is not in contact with services until disease is advanced or the person or family is in ‘crisis’.

There is evidence that minority ethnic carers are more likely to be isolated from mainstream services. Some may view using a service as a source of shame (4). In Islam, Hinduism and Sikhism the duty of care is apparent or is regarded as a ‘test from God’ (4). There is stigma around dementia is some cultures; it may be regarded as a punishment for past misdemeanours or a family member with dementia may damage the marriage prospects of a young relative.

There’s evidence that people from BME communities are not sure where or how to find information about dementia. This is exacerbated by language barriers or when people have lost cognitive skills, or if online information is not available in community languages. People may confuse the symptoms of dementia with ‘normal ageing’ and not seek the support that is available. That is why access to sector organisations which can support navigation of the system is so important.

Community navigators can support staff who lack specific cultural knowledge as well as individuals and families from that community. Establishing links with culturally-appropriate voluntary and community groups as well as interpreters who can support communication with families will provide the opportunity to discuss diagnosis and treatment options. There are examples of good practice in dementia care for those from BME communities but expertise needs to be shared more widely across the provider sectors (5).