Dementia: the untold story of our BME population

There is a worldwide recognition that dementia is one of the key public health issues of the 21st century. However, while the looming challenges implied by our ageing population are well known in the UK, very little is known about the impact of dementia on black and minority ethnic communities.

The number of people with dementia worldwide is expected to double by 2030 and triple by 2050. In the UK, the annual cost of dementia to the economy has been estimated to be £23bn. 

‘There is very little research into the impact of dementia on black and minority ethnic communities’

Despite a commitment from the government to double spending on research by 2025, compared with other conditions such as cancer, research into dementia remains underfunded.

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In particular, there is very little research into the impact of BME communities. While the BME population in Britain has traditionally had a younger demographic than the majority white population, in recent years there has been a steady increase in the number of older people from these communities (for example over 65s in the Indian ethnic group increased from 36,141 in the 1991 census to 115,085 in 2011). 

Greater prevalence

There is a growing body of evidence suggesting that the prevalence of dementia is greater among African-Caribbean and South Asian UK populations. African-Caribbean communities may also experience a lower age of onset due to the increased presence of risk factors for vascular dementia, such as hypertension.

This presents challenges for providers of dementia services, either if they have not previously reached these groups or if their commissioning processes are not prepared to respond to the major shifts in demographics that are occurring.

For some communities the experience of dementia may be new: most families from BME groups who migrated to the UK were of working age, meaning they did not grow up with older relatives around them. 

In many communities, life expectancy in the UK may now significantly exceed that in their country of origin, increasing the likelihood of dementia developing.

‘Policy guidance relating to BME communities has been overlooked in the rollout of the national dementia strategy’

It may also be difficult to reconcile the needs and expectations of older people with those of their families: older people may expect to be looked after by their extended family, while families may struggle to juggle caring responsibilities. 

Combined with limited awareness of mainstream services, stigma surrounding mental health issues and shame associated with asking for outside help, BME families may struggle in isolation with their caring responsibilities. 

In a new briefing paper, produced as part of the Race Equality Foundation’s Better Health collection, David Truswell used prevalence rates and population data from the Alzheimer’s Society and the 2011 census respectively to model the numbers of people from minority ethnic backgrounds who are likely to have dementia. 

Targeted approach essential

Estimating that more than 40,000 older, minority ethnic people may be living with dementia, Truswell argues that existing policy guidance relating to these communities has been overlooked in the rollout of the national dementia strategy and that a more targeted approach is essential.

‘Improved training in cultural competency among care professionals is essential to ensure individuals are better supported’

The use of “community dementia navigators” would present an innovative pathway approach to living well with dementia. Employing befrienders, individuals with dementia and their carers would receive day to day support and help finding their way around the health and social care system. 

Improved training in cultural competency among professionals across the care pathway is essential, both to reduce late diagnosis among BME communities, and to ensure that individuals are better supported throughout their treatment.

These proposals are seen as presenting an “invest to save” opportunity for the NHS, by reducing the number of costly unscheduled hospital admissions and transfers to residential care.

A breakdown and comparison of the cost of different community support models compared with residential care demonstrates that, even when taking into account the cost of training and implementing the “community dementia navigator” model, savings are likely to be made. 

Kat Clayton is information officer at the Race Equality Foundation