New campaign to break dementia ‘taboo’ in South Asian groups

Shobna Gulati, who is best known for her roles in soaps Coronation Street and dinnerladies, has spoken out about her own family’s experience of dementia as part of the awareness raising project by Alzheimer’s Research UK.

“There is still a real taboo around dementia, especially in South Asian communities”

Shobna Gulati

The campaign, called ‘Talk Dementia’, features an informative film in English, Hindi and Urdu that will be shared across social media throughout June and July. 

Ahead of the launch, the charity worked with South Asian community groups in the Midlands area of England to explore their perceptions of dementia.

This programme revealed opportunities to help people from these backgrounds better understand dementia and how people can control their risk, including keeping their heart healthy.

As part of the campaign launch, Ms Gulati has written a blog for the charity about her own experience of caring for her mother who is living with vascular dementia.

Ms Gulati 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“My mum speaks English, Punjabi and Hindi and the confusing words describing dementia across languages only exacerbates out-of-date and unhelpful attitudes towards the condition,” she said.

“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,” she added.

“I’ve experienced the isolation when communities aren’t able to open up, share experiences and support each other,” said Ms Gulati.

“If we can help people talk about dementia, we create support networks and enable people to find information that can be a real lifeline,” she added.

Ms Gulati said the campaign was a great way to “start an open conversation and end the stigma around dementia”.

 “We hope it acts as a helpful way to encourage discussion about dementia”

Hilary Evans

According to research by the charity, one in three people from a black, Asian or minority ethnic (BAME) background still believe dementia is an inevitable part of getting older.

In addition, people from BAME communities are also less likely than their white counterparts to recognise that dementia causes death (40% vs 53%), noted the charity.

The charity also found that 63% of BAME people recognise that dementia affects physical aspects of a person’s health, while 75% do from a white ethnic background.

Meanwhile, 44% of people from BAME communities consider getting involved in medical research for dementia in the future, whereas 51% do from a white ethnic background.

Chief executive of Alzheimer’s Research UK, Hilary Evans, said: “Stigma and misunderstanding about dementia still exist 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,” she said.

“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,” noted Ms Evans.

She said Alzheimer’s Research UK was attempting to improve understanding of dementia by distributing high quality information about the condition to encourage open discussion among the public. 

“We are so grateful to Shobna for sharing her family’s story and all the groups we worked with to develop the film,” she added. “We hope it acts as a helpful way to encourage discussion about dementia and empower people to find out the facts.”