18 Sep 2025
"Dementia never travels alone," says Dr Kumud Kantilal, one of ARC North Thames’ four Dementia Fellows. "Up to 80% of people with dementia also live with other long-term conditions as well”.
Kumud is focusing her research on personalised care for people living with dementia and multiple long-term conditions, particularly within South Asian communities.
But Kumud’s work is showing that not travelling alone is sometimes a good thing – at least when it comes to dementia research. She might have led the research, but she certainly hasn’t done it by herself.
That is because researching such a complex illness – especially its connections with other conditions – needs the involvement of many voices and stories of lived experience. Doing so helps researchers capture the nuance of what living with dementia is really like.
Public contributors Nira, Sudhir, Joan, Manoj and Nazia all shared their experiences in different and dynamic ways with Kumud to help inform her findings and bring the work to life.
1. Shaping the focus of research through understanding experiences
It was working with patients and the public that shaped Kumud’s research focus on South Asian communities in the first place.
Through her engagement with people who know what it is like living with dementia, she learnt that carers from South Asian backgrounds were unlikely to reach out for help beyond their family unit, due to a lack of understanding about the condition.
“Often dementia is not even recognised because there actually isn’t a word for dementia in South Asian communities. And often, memory loss is seen as a normal part of aging, so there isn’t even the understanding to go and seek help”.
Being from a South Asian background herself, Kumud understands some of the cultural nuances but aims to develop broader understanding of the community’s experiences with dementia to inform how services need to change to be tailored appropriately.
2. Guiding the research as it progresses
Research Advisory Panels bring together people with lived experience and other stakeholders to guide research and help ensure it stays relevant to the people it aims to serve.
When seeking members for her project’s advisory panel, Kumud met Manoj, who cares for a sister living with dementia and multiple other health conditions.
Manoj has supported Kumud’s research by reviewing her study materials, including protocols, interview questions, and the information sheet shared with participants. He will also support Kumud in the analysis of interview results.
Kumud also approached Nazia, who writes about her experiences of caring for her mum on her blog “Dementia Sphere”. The two met at an Equalities in Dementia Network Plus (EquaDem) Meeting, and Kumud asked her to join her Research Advisory Panel. Nazia also joined Kumud on her stand at the Seeing Dementia Differently event, sharing her experiences with the public.
Kumud values Manoj and Nazia's inputs and plans to continue to work with her research advisory panel to get further insights into the complexities of managing dementia in the context of other health conditions and to guide her research.
3. Coproducing accessible materials
Long-time NIHR ARC North Thames patient and public involvement and engagement research advisory panel member Sudhir has described his family’s experiences of caring for a relative living with dementia as “chaos theory”.
Sudhir has written movingly about the challenges of caring responsibilities with other family members, which he shares here.
Read Sudhir's pamphlet: Caring for a relative with Dementia (Downloads PDF)
Sudhir’s booklet was shared at our public engagement event Seeing Dementia Differently, and it supported Kumud to engage visitors to the event in conversations about the complexities of caring for people with dementia alongside other health conditions.
Many people related to Sudhir’s experiences and felt less isolated and more able to share their own experiences.
4. Listening and learning through stories
In addition to Sudhir, Manoj, and Nazia’s generous sharing of experience and time, Nira and Joan gave Kumud insight into their journeys supporting loved ones with dementia:
“Nira shared her experiences about the ups and downs of caring for her sister. She told me beautiful stories of their childhood in Africa and how her sister ‘lights up’ when she hears old Bollywood songs or watches old movies. Nira’s stories have shaped my understanding of the cultural influences on dementia care and management.”
"Joan shared a very moving poem with me, called The Carer. The poem describes Joan’s loneliness when caring for her late husband who had dementia and cancer. Joan shared her poem with people attending the ARC North Thames event on 22 May 2025.”
The Carer
A poem by Joan Manning
Help me, help me. Nobody hears.
My voice is silent. Invisible my tears.
My smile is benign, my hands are both worn,
My back is aching. My heart, it is torn.
Help me, help me. Nobody sees.
When I’m here on my own, and I sink to my knees.
I pray to the Lord in his heaven above,
He should give me the strength, as well as his love.
To meet every day with both patience and grace.
I should greet every morning with love on my face.
Help me, help me. An occasional hug
Would be nice, instead of the shrug.
You offer your time, or your help or advice.
But at your convenience. And although that’s quite nice
We can’t always fit in, and I don’t want to complain.
But I’ll ask only once, and then never again.
Help me, help me. Can you not hear?
I’m all on my own, with this terrible fear.
That I may lose control. That I may not cope.
I’m losing my love and I’m losing all hope.
This carer is willing to bear with the pain.
There will be no thanks. There will be no gain.
The path is so lonely. No one can share.
Sometimes it feels it is too much to bear.
And then, when you say ‘It’s great how you cope’,
I shrivel inside and I know there’s no hope
That you’ll hear my cries, or you’ll feel my tears.
Until you take my place in some future years.
And you’ll cry for help - and shed silent tears.
And you too will ask why nobody hears.
Throughout Kumud’s research, she has been committed to collecting and considering the stories of those she engages with. Collectively, this support has given Kumud the opportunity to create research insights which are rich and human.
Going Forward
As Kumud reflects: "I think it's vital that researchers involve members of the public in their research, because it is the member of the public or people with lived experience that know what it's like living with the disease. I don't know what it's like living with dementia, but the people that I'm talking to do."
This collaborative approach has fundamentally shaped her research direction. Kumud's findings will identify what dementia care should look like for people from South Asian backgrounds and make recommendations to providers on how to personalise care to be culturally appropriate.
Kumud recognises that when dementia research travels with lived experience, it becomes more relevant, more human, and ultimately more useful to the communities it aims to serve.