African-Caribbean and South Asian UK communities are at greater risk of developing dementia than the indigenous white population, but there is a lack of specialist care
As her mother swaps childhood stories with her peers at a social club, Amina Begum sees another side to her 65-year-old parent. Her mother, Jahanara, is at ease and animated instead of being confused and frustrated.
Amina, 33, is a full-time carer for Jahanara, who was diagnosed with vascular dementia two years ago. The pair, from Tower Hamlets, east London, are among around 200 regulars at a monthly “dementia cafe” for the area’s Bengali community run by the Alzheimer’s Society. Based at the East London Mosque, the innovative two-year-old Sylheti-speaking group supports people with dementia, their families and carers. Participants receive information, advice and take part in activities.
Amina’s father had Alzheimer’s and died seven years ago. Then, the family felt isolated, with friends and family not understanding the condition. Today, caring for her mother with a similar condition, Amina has more support thanks to the dementia cafe.
She says: “We laugh a lot there. My mum swaps stories from back home and remembers stuff from her past. It makes me see that I’m not the only one going through this. It is important that it’s specifically for the Bengali community – everyone lives locally and my mum feels comfortable.”
The cost and human impact of dementia are well known and the issue is prominent on the political and public agenda – September 21 is World Alzheimer’s Day – but black and minority ethnic (BME) communities are underrepresented in dementia services, and specialist services are not widespread. Yet, according to a Race Equality Foundation paper last year, there is growing evidence that African-Caribbean and South Asian UK communities are at greater risk of developing dementia than the indigenous white population. Estimates suggest there are almost 25,000 people with dementia from such communities in England and Wales, a figure predicted to grow to 50,000 by 2026 and 172,000 by 2051. It is thought that the BME population more commonly develops vascular dementia (linked to problems with the supply of blood to the brain) because individuals are more prone to risk factors such as cardiovascular disease, hypertension, and diabetes.
Philly Hare, programme manager with the Joseph Rowntree Foundation ageing society team, adds that the relative “invisibility” of BME communities partly stems from language and literacy difficulties. She says lack of local knowledge and unfamiliarity with systems are to blame, as well as people shunning services found insensitive to their needs – for example, in relation to diet. In addition, as research by the foundation shows, younger women feel criticised for using support services for their parents.
Hare adds: “In 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.” According to a briefing from the Social Care Institute for Excellence, people tend to present later to dementia services – mistaking the symptoms as part of “normal ageing”.
In Tower Hamlets, support includes help for the Somali community. Separate monthly dementia cafe groups for women and men meet in different venues. There is also a project to increase awareness among Chinese residents.
Mohammed Muhith, BME services development officer with Alzheimer’s Society Tower Hamlets, explains why culturally specific meetings are vital: “People can be reluctant to talk, they don’t feel comfortable, there can be a language barrier. People want to reminisce with others like them, with the same culture and language.”
Muhith says referrals come from health and social care authorities or other charities, but there is stigma involved in asking for help beyond the family. “We had one referral to see an older lady – her son had bought her wheelchair, without any assessment from therapy or health support. He thought he was doing the right thing, but hadn’t got any advice.” The family will come to the next dementia cafe.
At the Bengali group, participants meet for two hours, with visits from organisations such as Age UK or health or carers’ groups offering a kind of one-stop shop for advice. Muhith adds that “reminiscing activities” are important: “People chat about things like the independence of Bangladesh, we share old films, or slide presentations about life back home; it triggers memories.”
The dementia cafe work complements the memory clinic run by the local authority and health agencies. This offers early assessment for people with memory problems and is helping boost diagnosis rates.
Good practice elsewhere includes the City Bridge Trust Dementia Project from Crossroads Care Bexley. This identifies gaps in support for families in south-east London – particularly among ethnic communities. As well as enabling carers to have a break, project workers visit local associations to deliver bilingual presentations.
There are other groups outside the south east but BME-specific services are the exception, not the rule.
Hare suggests that all sectors need to invest in training in “cultural competence”, avoiding and challenging ageist attitudes and assumptions about ethnic communities. Along with offering information in different languages and employing outreach workers from the same cultural group, Hare says, services could try to present dementia as a medical condition, thereby giving “permission” to people to access health treatment. Commissioners must also “respond to the major shifts in demographics” and create a more developed structure to share good practice, he says.
Amina Begum and her family in Tower Hamlets agree: “We definitely need more of these sorts of services for ethnic [minority] communities – they should not suffer in silence.”
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