Shobna Gulati has spoken out about her own family’s experience of dementia to encourage more open discussion of the condition in South Asian communities. The actress has shared her story to launch a new campaign from Alzheimer’s Research UK, which aims to help people understand what dementia is and how it affects someone. The campaign, ‘Talk Dementia’, features a film in English, Hindi and Urdu that will be shared across social media through June and July.

850,000 people in the UK are living with dementia today and estimates suggest there will be a seven-fold increase in the number of people from black, Asian and minority ethnic (BAME) communities who develop dementia in the next 40 years.

Dementia is caused by physical brain diseases, most commonly Alzheimer’s disease, and is now the leading cause of death in the UK. Despite that, results from Alzheimer’s Research UK’s Dementia Attitudes Monitor*, show 1 in 3 people (33%) from BAME background still believes dementia is an inevitable part of getting older.

People from BAME communities are also less likely than those from white ethnic backgrounds to:

• Recognise that dementia causes death (40% vs 53%).
• Appreciate that dementia affects physical aspects of a person’s health (63% vs 75%).
• Consider getting involved in medical research for dementia in the future (44% vs 51%).

Actress Shobna Gulati has written a blog for the charity to reveal the impact this has had on her own experience of caring for her mother, who is living with vascular dementia. Shobna said: “There is still a real taboo around dementia, especially in South Asian communities where the condition is often brushed under the carpet. My mum speaks English, Punjabi and Hindi and the confusing words describing dementia across languages only exacerbates out-of-date and unhelpful attitudes towards the condition.

“Dementia is not ‘madness’ and it’s not something to be ashamed of – we are all human beings and dementia is caused by physical diseases. I’ve experienced the isolation when communities aren’t able to open up, share experiences and support each other. If we can help people talk about dementia, we create support networks and enable people to find information that can be a real lifeline. This campaign from Alzheimer’s Research UK is a great way to start an open conversation and end the stigma around dementia.”

Alzheimer’s Research UK and the Community Health and Learning Foundation worked with South Asian community groups in the Midlands to explore perceptions of dementia. The project revealed real opportunities to help people understand what dementia is, how it affects someone and how people can control their risk, including keeping their heart healthy.

The ‘Talk Dementia’ film sees members of the Sahil Project, a positive well-being support service for South Asian women and men in Coventry, talk openly about their own experiences of dementia and simple ways people can keep their brain healthy. It provides a way for people to access high-quality information about dementia from Alzheimer’s Research UK in a range of non-English languages.

Urvashi Desai, 55, lives in Finchley and cares for her husband Bhupendra, who was diagnosed with frontotemporal dementia at the age of 56. She said: “Bhupendra’s dementia doesn’t really affect his memory, it’s more his behaviour and communication – he doesn’t speak English anymore. It’s still a very taboo subject in South Asian communities but it shouldn’t be. Talking about dementia, and helping people understand what it is, is so important for breaking down stigma. The more we can talk about it in everyday life and involve those affected, we can better support families experiencing dementia and encourage those who are worried to seek help earlier. I wish we’d have known more about dementia when Bhupendra started showing symptoms, it would been a great help for talking with the family about it and keeping him as involved as possible in the community.”

Hilary Evans, Chief Executive of Alzheimer’s Research UK, said: “Stigma and misunderstanding about dementia still exists in all communities up and down the UK, but people within BAME communities often face particular challenges. Dementia is not a normal part of ageing, it’s caused by physical diseases and not something to be ashamed of.

“We know that people in South Asian communities may face a higher risk of dementia due to risk factors such as high blood pressure and diabetes, yet they may also be less likely to seek support or access opportunities to get involved in research. While dementia is caused by a complex mix of age, genetics and lifestyle factors, keeping a healthy heart throughout life can also help look after the brain.

“One way to help improve understanding of dementia, is to encourage open discussion and provide people with high quality information and that’s what this campaign from Alzheimer’s Research UK aims to do. We are so grateful to Shobna for sharing her family’s story and all the groups we worked with to develop the film. We hope it acts as a helpful way to encourage discussion about dementia and empower people to find out the facts.”

The campaign will run from 25 June -9 July across Facebook and Instagram.

Watch the film at alzres.uk/talk

The film was developed in partnership with the Sahil Project and supported by the Morrisons Foundation.

* The Dementia Attitudes Monitor, includes data from 2,361 interviews, of which 543 were from BAME backgrounds, conducted by Ipsos MORI between 15 June and 5 July 2018.