As Alzheimer's Society's Dementia Action Week approaches (May 19th-25th), the focus is on early diagnosis—encouraging individuals with dementia concerns to seek professional help and begin meaningful conversations with their GPs.
In the lead-up to this crucial week, Asian Voice had the privilege of speaking to Kamel Hothi OBE, an Alzheimer’s Society Ambassador, and one of the most influential voices within the South Asian community when it comes to raising awareness about dementia. Kamel, who knows firsthand the devastating effects of dementia has pledged to help break down the stigma surrounding the disease in her community, a task that has become deeply personal.
Kamel shared her experiences, insights, and the need for more open dialogue within the community.
The impact of dementia on Kamel's family
Kamel's journey with dementia began in an unexpected way. Working with Alzheimer’s Society as a corporate partner, Kamel’s own family was dealing with the diagnosis of her uncle. Initially, Kamel’s family kept the struggles private, not fully understanding the nature of her uncle’s condition.
Kamel recalls, “When my uncle had a heart attack and he was a very fit man, this was the beginning of his dementia journey. His confusion started with small things—complaining he hadn’t been fed, even though he had meals. We didn’t know it was dementia at the time. It caused a lot of tension, and no one knew how to handle it.”
Her uncle’s situation worsened rapidly, leading to a distressing incident where he wandered away from the hospital and was found by a neighbour. Sadly, his condition deteriorated quickly, and he died soon after. That experience, although painful, was Kamel's first real introduction to dementia.
Now, years later, dementia has affected multiple members of Kamel’s extended family, who are at different stages of the disease. She describes the variety of symptoms: “I have loved ones who now are living with dementia. Two of them are very placid—they don’t recognise me but are able to have simple conversations and enjoy some basic daily life routines. The other has become more aggressive and suspicious. The difference in how the disease manifests shows just how complex it is.”
The role of carers in the South Asian community
Kamel strongly believes that supporting caregivers is a key aspect of raising awareness. Carers, especially those in South Asian families, often face challenges that can be overlooked. As dementia takes its toll on individuals, it can be the daughters, daughters-in-law, and other women in the family who often bear the brunt of care responsibilities. These women often find themselves isolated, underappreciated, and burdened with societal judgments.
“Caregiving is not just about providing physical support,” says Kamel. “It’s deeply emotional. In our community, there’s often a lot of scrutiny. My mother-in-law, who lived with me for over 38 years and was a key matriarch in our family, became housebound due to several complicated health conditions. As her mobility declined, she grew increasingly frustrated. Not being able to do the things she once loved—like cooking or socialising—often led to stubbornness and aggression, which she sometimes directed at me or our carers.
“She would frequently refuse simple tasks, such as changing her clothes or doing basic exercises. Meanwhile, I had to manage the criticism. People who visited while I was at work would call me, questioning why she was still in a stained nightdress. But they didn’t see the reality behind those moments. The truth is, we can be a caring community—but we can also be incredibly judgmental.”
She emphasised the importance of starting conversations early. “When you notice signs like forgetfulness, repetition, or suspicion; it’s crucial to talk about it, even though it can be difficult. It’s important to help loved ones understand what’s happening, and to encourage early diagnosis.”
She suggests, “If we notice something in a friend’s family, we can gently ask, ‘I’ve noticed something, and I just want to know if you’ve seen the same things?’ Then offer to help in any way you can—whether it’s going to the doctor or just providing a listening ear.
“It’s about showing empathy and offering support in a way that doesn’t overstep boundaries.”
It is clear that the caring duties tend to fall on the shoulders of women who also are juggling the family home, work and children. For Kamel, this is where the community must step up and support caregivers who are often overwhelmed by their responsibilities.
Early diagnosis, she says, is a crucial step in managing the disease and providing the support needed by and to caregivers and creating road maps on how to collectively support those living with dementia. .
Breaking the silence on dementia
A core challenge Kamel addresses is the cultural stigma surrounding dementia within the South Asian community. In many households, there is a deep-rooted cultural tendency to maintain privacy—especially regarding mental health or cognitive decline. “In our culture, we are taught to protect the ‘honour’ of the family, and that often means keeping issues like dementia hidden,” she explains. “But dementia isn’t a shameful thing. It’s a medical condition that needs our understanding and support.”
She calls for a change in how the community views mental health and dementia. “We need more open dialogue. We need to redefine what ‘honour’ means, and to understand that caring for a family member with dementia should not be seen as a burden or something to hide. We need to embrace these conversations and educate ourselves.”
One-way Kamel envisions raising awareness is through community platforms that people already engage with, like sports or cultural events. “Why not use cricket, which is a religion for many of us, to talk about dementia? Why not use weddings or religious gatherings, like at temples or gurdwaras, to share information and raise awareness?”
As the conversation surrounding dementia becomes more visible in the South Asian community, Kamel hopes to see even more representation and resources tailored to their needs. As we enter Dementia Action Week, Kamel’s message is clear: break the silence, seek help early, and offer support to both those affected and their caregivers.
If you’re worried about yourself, or someone close to you, then check your symptoms today using Alzheimer’s Society’s symptom checklist. Visit alzheimers.org.uk/checklist or call their Dementia Support Line on 0333 150 3456.
