A new campaign called 'The Dementia Friends Programme' by Public Health England and The Alzheimer's Society recently launched to increase awareness about dementia in black and minority ethnic communities.
Dementia is becoming progressively more common in the UK with around 800, 000 members of the population diagnosed with the disease, according to statistics recorded by The Alzheimer's Society. This surprisingly large number also encompasses the increasing number of BAME people developing dementia and it is estimated that nearly 25, 000 people with the disease come from ethnic minority groups in the UK.
Dementia Friends Programme
While dementia affects a large proportion of people, a significant percentage of which are unfortunately Asian and quite surprisingly, the uptake of mainstream dementia services is very limited amongst South Asians. Evidence suggests that there are a myriad of reasons for this, all of which stem from one foundational issue: taboo. A reluctance to discuss the disease, which is often perceived as just plain 'madness' prevents many South Asian sufferers from seeking the help that they need. As a result of the initial dismissal, in many cases, Asian people seek help from dementia services much later than their white counterparts, when their dementia has become more severe.
South Asian families quickly dismiss dementia attributing it to old age
Dementia is caused when the brain is damaged by diseases, such as Alzheimer's diseases or a series of strokes. Symptoms vary depending on which parts of the brain have suffered damage but include: impairment to memory, visuospatial skills, concentration and conversational skills. The cause of dementia has been linked to various diseases including high blood pressure, diabetes and heart disease. Therefore, research suggests that it is likely that dementia is more common among South Asians because of their susceptibility to these specific risk factors.
Considering their vulnerability to the disease, the lack of dementia awareness amongst South Asians is pressing. Misdiagnosis by family members is further detrimental to dementia sufferers' health - without correct support and treatment, it becomes impossible for them to experience any kind of normality. Often South Asian families quickly dismiss dementia attributing it to old age and instead keep suffering family members at home to provide support for what is considered simply 'memory loss.'
Dementia Awareness Amongst South Asians
Dr. Bhajneek Grewal attendee of Ramgarhia Gurdwara in Bradford, introduced a dementia friendly scheme to the local place of worship. She tells us: 'There are a number of reasons why dementia is not addressed in the Asian community. One of these is cultural - many Asians are keen to keep their elders at home to look after them - which is of course, noble and honourable and should be encouraged, but it gets in the way of them accessing the support of a medical professional. This involves opening up to an outside party which just isn't done in the Asian culture.'
There is a distinct lack of literature in different languages available to the Asian community about dementia, which also contributes to the lack of awareness about the disease. There is no direct translation in Hindu, Urdu or Punjabi for dementia which is also a contributing factor to the confusion surrounding it - how can it be explained?
There is a distinct lack of literature... available to the Asian community about dementia
Dr. Grewal continues: 'Fear of the unknown creates a taboo. For the taboo to be removed, there needs to be an increase in knowledge about the disease. The response from my scheme has been really encouraging. Sometimes, it just takes one person to make a difference. Once the conversation gets going, the rest falls into place. I've had Gurdwara's across the UK contacting me, asking me to help introduce the dementia friendly scheme in their place of worship. What we're doing is bridging the gap between having trouble with memory and visiting the GP - that's the bit Asians struggle with - making that initial step. Once that's done, the rest gets easier.'
The number of people with dementia from ethnic minority groups is expected to rise significantly to nearly 50,000 by 2026 and over 172,000 people by 2051; which is nearly a seven-fold increase in 40 years. Therefore, conversation about dementia need to take place now, in order to help both current and future sufferers. The Dementia Friends Programme does just that through a unique scheme to train people to become a Dementia Friend through information sessions in person or online. The initiative targets South Asian communities specifically, so they can spot the signs of dementia early.