To mark World Alzheimer’s Month, we have created a new video to encourage people of South Asian heritage to take part in dementia research. 

In this video, researchers and members of the public speak about their experiences with dementia and why taking part in research is so important. 

Sania

For Sania Rehman, Local Services Manager for Team Sahara at Alzheimer’s Society, taking part in dementia research was a personal choice when both of her grandfathers were diagnosed with dementia.

Her maternal grandfather lived with Alzheimer’s for nearly 16 years. He was able to live well with the condition after receiving an early diagnosis. At the age of 13, she also became a carer for her paternal grandfather who developed vascular dementia after suffering from a stroke.

Sania says: “I want my children to have the tools and the resources to be able to live through that or support someone through that.”

Now, Sania has become a research participant through Join Dementia Research. She signed up to the service and has taken part in different studies to help support potential treatments, diagnose and care for people living with dementia.

She said: “When we are looking at dementia there are huge barriers in our community.

“The main reason is that there is no word for dementia in most South Asian languages. So, if there is no word for a condition, how can we expect people to understand it?

“We need more representation in dementia research. We cannot expect treatments, diagnosis and support to be inclusive if we don’t have the right people taking part in research.”

Masood

Masood A. Qureshi was diagnosed with frontotemporal dementia during a routine heart operation. With no prior symptoms and little knowledge of the condition, the news came as a shock. 

For more than a year, Masood lived in silence. He was fearful of what the diagnosis meant and unsure how to share it with his family. 

Now, he is living well with the condition. He is taking part in research to help future generations and encouraging others to do the same. 

He said: “When I was told that I’ve got dementia, I was scared. Now I’ve educated myself and I’ve come to terms with it. And I believe that there is life with dementia. It’s just slightly different.

“I’m sure in fact that I won’t get the benefit from what I’m doing but I believe that my grandchildren will. Making sure that I learn, they learn and together maybe we can find a solution.”

Jitendra

About 7 years ago, Jitendra Kaumar Gupta found that he was regularly forgetting things such as why he had walked into a room. 

Having spoken about his symptoms with his family, Jitendra was encouraged to visit his GP. Following several visits, he received his diagnosis of vascular dementia.

If the opportunity arises, Jitendra believes that everyone should take part in research. Through Join Dementia Research, you can take part in studies whether you have dementia or not. 

He said: “The more we learn, the more people we can help. Join Dementia Research to help other members of the public, and your family and friends.”

Watch the video to find out how you can sign up to Join Dementia Research today to register your interest in taking part in research: