Research
Involving more people from South Asian communities in dementia research
Dementia research needs to involve all kinds of people in studies, including people from South Asian communities.
‘I’ve learnt the hard way about Alzheimer’s and vascular dementia,’ says Jagdish in Manchester.
‘I gave up my career to care and advocate for my dear mum across all the fragmented services.
‘Ensuring that Mum remained in her own home – safe – nearly broke me.’
Jagdish felt completely failed by services, from not having carers who could provide the right level and type of support, to her mum not receiving end of life care.
‘I am channelling my grief and trauma into raising awareness of inequities and lack of inclusivity in dementia care for South Asian and other marginalised communities,’ she says.
Promoting dementia research
Research has a vital role to play in this.
‘Our lived experiences are central to research that informs policy and services,’ says Jagdish.
‘It’s vital that our communities engage with research to improve services.
‘Organisations also need to reach out to marginalised communities to raise awareness of the importance and impact of research.’
Researchers need a range of people to take part in studies, otherwise we can’t be sure their findings apply to everyone. But people from South Asian communities – among others – are underrepresented as participants.
Diversity in dementia research
Jaheeda Gangannagaripalli, Research Fellow at the University of Manchester, has been bridging this gap in her work.
While adapting an app that prevents falls for people with dementia – KOKU-LITE – Jaheeda reached out to local South Asian communities to involve them, she explains.
Unless we get input from them, we can’t make the changes that take their preferences into account.
That means making sure research is done in the right languages and in culturally appropriate ways.
It also means building trust, so people know it’s worthwhile and safe to take part. Jaheeda underlines the importance of consistent contact in this, to share findings and more.
‘We need to make that consistent, and researchers need the right training so that we’re confident and approachable.’
Volunteering for dementia research
At first, Dipali Das felt hesitant about taking part in research.
However, her family’s experiences of dementia – and wondering about her own risk of developing it – motivated her to volunteer.

Dipali’s mother has young-onset dementia and her father, who died in 2023, had vascular dementia.
Dipali has gained a lot from taking part in dementia studies, and she’s optimistic about how people will respond when they understand the benefits.
‘It made me think more about my own health,’ she says.
It felt good to contribute to work that may hopefully help future generations.
‘When people see opportunities to talk about it or get involved in research, I think it’s welcomed and embraced.
‘It’s very worthwhile.’
Dementia research needs you
Call 0333 150 3456 and ask for the Research Participation team, or email joindementiaresearch@alzheimers.org.uk