Blog:‘Breaking the Barrier!’ Dementia and Stigma in BAME Communities

What Do the Stats Say?

Since 2015 estimates have varied between 15,000 and 25,000 people from Black, Asian and minority ethnic communities being diagnosed and living with dementia in the UK. Compared with the total estimate of 850,000 in the UK, this represents between 1.76% and 3% of the estimated total nationally.

As the demography of Barking and Dagenham has changed, currently we can only guess at the number of people from those communities, who are living with dementia. Why is that? Why don’t we know more?

For a number of years local authority commissioners and the specialists clinicians providing the services have sought to support the needs of individuals, within their cultural and religious belief structures. How successful has that been? What barriers have emerged?

Communication lets us down...

Highly stigmatised - historically dementia is misunderstood in many BAME communities. It isolates individuals living with it and those who maybe caring for them.

Communicating what dementia is to BAME groups has presented a challenge to service providers. Within the BAME community, fewer referrals from GPs reach a psychiatrist or neurologist, according to Alzheimers UK. It can result in misdiagnosis and poor treatment.

For some people, the experience of what it means to live with dementia is 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 they were young.

Knowledge about dementia is negatively perceived - in one Chinese community, dementia was a poorly-translated term interpreting the meaning as ‘lost intelligence disease’.

Differences in Culture and reducing Stigma

Engaging with local health and care services might be resisted by some BME communities. Perhaps they fear discrimination or find services difficult to access.

Minority ethnic carers may be more likely to be isolated from mainstream services; some may view using a service as a source of shame.

In Islam, Hinduism and Sikhism, caring duties might be seen as a ‘test from God’ as punishment for past misdemeanours. Another reason might be that a family member with dementia could damage the marriage prospects of a young relative.

Research by the Social Care Institute for Excellence has found that people from BME communities are not sure where or how to find information about dementia. It is made worse by language barriers or when people lose their cognitive skills. Confusing symptoms of dementia with ‘normal ageing’ could lead people down a pathway to not seeking the support that is available to them.

Finding help and support

An opportunity presents itself where individuals from BAME communities can support staff who provide services, with specific cultural knowledge. They could cultivate links to individuals and their families from that community.  Establishing links with culturally-appropriate voluntary and community groups, as well as interpreters who can support communication with families, would provide the opportunity to discuss diagnosis and treatment. Sharing expertise across the provider sectors, could bring about greater awareness and shared knowledge.