THOUSANDS OF people in the UK could be living with dementia in secret because of shame surrounding the disease, a leading expert has revealed.
Official figures on how many people from the black, Asian and minority ethnic communities have dementia in the UK could be vastly underestimated, according to Mohammed Rauf MBE, a leading voice in the BAME dementia space.
While around 25,000 people from BAME backgrounds are accepted to have the disease in the UK , the stigma attached across a number of cultures means there are growing numbers who are having to cope with dementia in silence and undiagnosed, though this is perhaps likely to be in the thousands.
Ethnicity has only very recently started to be captured in dementia healthcare provision.
Mohammed Rauf MBE, a leading voice in the BAME dementia space
Rauf, a leading voice in the BAME dementia space, says even many of those who have been diagnosed are missing out on vital care which could significantly alleviate symptoms of dementia, including music therapy.
Rauf is joining charity Music for Dementia in calling for more awareness and a more culturally inclusive approach to care to cater for the BAME communities, so the health and social care system is more understanding of the cultural impact on the condition.
Rauf – who has written about the issue in a blog post for Music for Dementia – said: “Ethnicity has only very recently started to be captured in dementia healthcare provision.
“As a result, the BAME dementia communities are underrepresented in data and there is a lot of guesswork involved. As the number of BAME older people increases in the UK, there is to be an expected 7 to 8 fold increase in dementia amongst these communities in the next few decades, meaning we could reach numbers in the region of 150,000 very quickly.
“There is a stigma around dementia in some cultures leading to the BAME dementia communities not actively seeking support, and cultural shame associated with the condition means that many communities don’t have a word for ‘dementia’.
“Not having a word for dementia in the five main South Asian languages (Urdu, Punjabi, Hindi, Gujarati and Bangla) creates a difficulty when you attempt to have conversations about a subject that has no identifiable term in those communities.
“The stigma around dementia is due to a lack of understanding. Dementia is thought about in a derogatory way by many people in the BAME communities. Some think it is madness, possession by jinns or witchcraft, others think it may be a punishment from God.
The stigma around dementia is due to a lack of understanding.
“So, the family carers and the person with dementia hides it and do not easily seek help or assessment. This means they miss out on vital support, such as music therapy, until they reach the point of crisis and more intensive support is needed.
“It’s a vicious cycle. When intensive support is needed, there is then stigma on top of that. Some BAME families won’t ask for additional help due to fear of prejudice from services and are reluctant to move relatives to a care home due to concerns about how that will be perceived in their community.
“Many families quietly try to get on with caring at home which leads to service providers thinking the BAME communities are happy to look after their own because their numbers are very low at the point of seeking help and support.”
He added: “Whilst BAME communities are seen to have English as a barrier to accessing services or support, it is important to recognise other social and economic barriers that exist which hinder access to the right support. Existing services are often not equipped to provide cultural competency in their support as they don’t always think there’s a need for diversity in their provision.
“BAME carers are more likely to be isolated from mainstream services and often people from BAME communities are not sure where or how to find information about dementia. There must be more education and training for family carers and staff working in dementia services on how to give culturally acceptable care and support people with dementia.”
Music for Dementia has republished its Covid-19 Musical Guide to include a cultural differences and music statement – providing guidance to carers within the BAME communities on how to effectively use music, rhythm or recitation to help people living with dementia find comfort and respite from symptoms.
Having access to personalised music, in the right way and at the right time, has been shown to be more impactful and meaningful in helping to counter the symptoms.
Grace Meadows, Programme Director of Music for Dementia
Grace Meadows, Programme Director of Music for Dementia, said: “We want to make sure everyone living with dementia – no matter what their background is – has access to the care that is right for them and takes the whole person into account. This is why personalised care is so important.
“Having access to personalised music, in the right way and at the right time, has been shown to be more impactful and meaningful in helping to counter the symptoms of dementia, such as anxiety and agitation.
In addition, it facilitates communication, creativity and importantly enables you to see the person for who they are, through the music that matters to them. We want to ensure everyone has equal access to music as part of their dementia care.”