This week is Dementia Awareness Week. In the last few years, there has been significant progress in terms of raising awareness, a crucial step towards tackling stigma around dementia. And according to Alzheimer’s Society, there are approximately 800,000 people living with dementia in the UK. 25,000 of these people are from BAME (Black, Asian and Minority Ethnic) communities.
I am Ripaljeet Kaur, BME Dementia Worker, at the Touchstone Support Centre. In my personal capacity as a Dementia Champion, I deliver dementia friends sessions to my local community, aiming to make our communities dementia friendly.
In Leeds, there is a constant push for making the city dementia friendly. All of us can play a role in creating dementia friendly communities.
Perceptions of dementia
My work is to break the stigma attached to dementia and show people that you can ‘live well with dementia’ because ‘life doesn’t stop at dementia’.
There are various perceptions of what Dementia is amongst the various BAME communities. Within some ethnic groups there is very little knowledge of dementia and some having no understanding at all. It all comes down to lack of awareness and support available for people from ethnic backgrounds. We need to educate people around dementia and its impacts on everyone touched by it.
BAME populations probably have higher prevalence than the existing statistics. Some of the reasons are as follows:
- Stigma within community regarding dementia
- Not many are aware of where to go to seek help
- Not many people would go to GP with early symptoms as they see it as age related issue
- Language is a barrier, of those that do go to their GP, they struggle to explain their worries
- Family dynamics have changed within ethnic communities, many elderly people are living on their own with little or no support from their family members
- Some feel ashamed talking about any mental health issues including dementia.
It is notable that two thirds of people with dementia live in the community while one third live in a care home. So, post diagnostic support plays very significant role in lives of people living with dementia and their carers. In Leeds, we have dementia cafes, carer support groups, singing for brain groups, dementia advisers, dementia support workers and many more services. The times have changed now, rather than waiting for people to access services, services need to be more proactive in reaching out to the communities.
Here is some of the work I do within BAME communities around dementia:
- awareness raising talks within community groups, reaching out to different groups based in different parts of Leeds.
- Supporting people on the pathway to get diagnosis and help them access services to support them live well with dementia.
- Running the South Asian dementia café ‘Hamari Yaadain’ first Thursday of every month.
- BME dementia workers forum, attended by different organisations.
There is great work happening in the Leeds, but there is still a long way to go for us. Not many people from BAME communities are getting timely diagnosis and lack of culturally appropriate post diagnostic services is a big hurdle for people from ethnic communities.
Find out more
Below are some of the links to get more information on dementia and services available in Leeds, which you might want to access to get more information:
- Touchstone: https://www.touchstonesupport.org.uk/services/bme-dementia-service/
- Alzheimer’s Society: http://www.alzheimers.org.uk/
- Carers Leeds: http://www.carersleeds.org.uk/