People from underrepresented and minority ethnic groups are more likely to develop dementia than the general UK population.

It is not fully understood why this is, but certain cultural and social factors, as well as a higher risk of other health conditions like heart disease and stroke may play a role.

Recent reports have highlighted delays in seeking and receiving a dementia diagnosis for people from South Asian backgrounds, as well as worse long-term health outcomes.

There is also under-representation of people from South Asian backgrounds in medical research studies, meaning the research findings are not representative.

Introduction to the project

Dementia Community Champions is a new volunteer initiative piloted in 2022-23 by Alzheimer’s Research UK (ARUK).

Working in partnership with local Leicester charity South Asian Health Action (SAHA) The aim of the first-year pilot was to recruit and train 15 people from South Asian communities in Leicester to become Dementia Community Champions.

Volunteer training

14 volunteers were recruited and trained over 1.5 days covering the following three pillars of learning:

  1. What is dementia.
  2. Dementia risk and brain health
  3. Taking part in research

Following the training, volunteers were tasked with running two events over six months.

Volunteer events

Eleven champions held 11 events with 1051 attendees.

Our volunteers delivered presentations in English, Gujarati and Hindi to make them more inclusive and used their local knowledge and networks to attract attendees from Gujarati, Bengali, Punjabi and Middle Eastern communities to attend, with participant ages ranging from 20 – 93 years old.

Snippets of feedback from session attendees:

“I've got a diagnosis of dementia. It took years for me to talk to my husband and my children and tell them something's not right”

 "I have a sister who has dementia; this information will help me support her."

I lost my partner two years ago during COVID. I could see the dementia signs you talked about, but my children did not want to listen to me or talk about it. I am trying to be healthier now.’

A focus of the initiative was to increase knowledge and understanding of brain health and risk factors for dementia.

Volunteers used creative and engaging methods to deliver messaging from our Think Brain Health campaign, including encouraging attendees to get up and active during their events. Volunteers linked everyday activities, such as playing with their children, cooking, and cleaning, to the three campaign pillars (‘Love your heart’, ‘Stay sharp’ and ‘Keep connected’) to make the risk reduction information widely accessible and relatable.

What's next

Building on insights from a successful 12-month pilot phase in Leicester. The second year pilot phase, funded by our corporate partner TP ICAP will continue to focus on South Asian communities. We will recruit two new volunteer groups in Nottingham and Derby and continue to support existing and new volunteers in Leicester.

How to become a Dementia Community Champion

If you would like to become a Dementia Community Champion, we are looking for volunteers from South Asian communities in the Nottingham area to join our network of Dementia Community Champions.

Find out more about the role and register your interest here