Talking about dementia in South Asian communities

Back in 2013, the All-party Parliamentary Group (APPG) on Dementia published a report called ‘Dementia does not discriminate’. Drawing on the experiences of people from black, Asian and minority ethnic (BAME) communities, the APPG identified a number of aspects of dementia that hit these communities particularly hard.

People from BAME communities may be more likely to develop dementia than those from other ethnic backgrounds. This may be due to their higher risk of heart disease, stroke and diabetes. These are all risk factors for dementia.

Awareness and understanding of dementia in BAME communities is also lower than in the UK population as a whole. Some South Asian languages don’t have a word for dementia, and this can lead to myths about what causes it.

Sadly, these myths about dementia can make it less likely for someone to talk to their family and friends, get help or go to the doctor if they’re worried they might have dementia. So it’s really important that we do all we can to raise awareness and banish myth and misunderstanding.

In 2016, Alzheimer’s Research UK started working with with South Asian and Arabic communities in the East Midlands to find out more about how people in these communities viewed dementia, and what further information people needed and wanted.

While the groups we worked with had some very basic understanding of the condition, there was little awareness of symptoms other than memory loss, or that different diseases cause dementia. But there was a real desire to know more!

Through booklets, films and radio, people wanted to learn about dementia and importantly, they wanted to do it in their own language.

We’re pleased to say these discussions sparked the development of our handy pocket-sized leaflet ‘A quick guide to dementia’, now available in the following languages:

The leaflet has been extremely popular. A mailing promoting it to all GP surgeries in the UK resulted in orders for over 50,000 leaflets – a stunning response!

This gave us an appetite to go further and look at other ways to get people talking about dementia. We were delighted to be welcomed back into the South Asian communities in the West and East Midlands.

We were very lucky to be introduced to the Sahil Project in Coventry, whose members could not have been more helpful. We held a workshop with them, discussing how we could get people talking about dementia through film in a genuine, open and encouraging way.

Not only did we have a really productive workshop, some of the attendees also set aside their inhibitions and starred in the film itself – not to mention letting us take part in their very energetic seated yoga session!

The film features our Sahil Project stars sharing some delicious Indian food while chatting about dementia and how it has affected their relatives. They also deliver some really important messages:

• Dementia is not something to be ashamed of.
• It is not an inevitable part of ageing but is caused by diseases.
• Memory loss is just one of many possible symptoms.
• There are lifestyle changes we can make to reduce our risk of dementia.

All those who took part in the film have personal experience of dementia and we are particularly grateful to them for talking so openly about their experiences to camera.

They clearly believe, as we do, in the importance of talking about dementia within their communities, and that creating this film will take us one step closer to breaking down those barriers.

We’d also like to thank actress Shobna Gulati who has spoken out about her mum’s experience of vascular dementia and how vital information has been to her family.

You can watch the film here.

Please share it, especially if you can help us to reach those people it can help the most.

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Our grateful thanks go to Morrisons Foundation and the Sahil Project in Coventry for their generous help in making this film.

We’d also like to thank Magneto Films and Community Health and Learning Foundation for working with us to create the film.