British Asia News Network
Zahra Ali & Sushma Lobo
London: ‘Your health is your wealth’ is a popular saying - one that particularly resonates with us when an illness touches our life or the life of a loved one. A lesser known fact is that every three minutes, somebody in the world develops dementia. Right now, that means 850,000 people in the UK and almost 50 million people globally are living with some form of the disease.
‘RISE.IQ’ is a care-based company that believes personalised guidance should be available to everyone touched by dementia. Set up by cofounders, Lena Chauhan and Cassandra Lee-Chiang, it aims to manage the symptoms and challenges of the disease by personalising the caring practice.
The Co-founder Lena noticed just how little the Indian community spoke about dementia - or any mental health issue for that matter. She felt impassioned to start the conversation and make a change, especially since some of her own family members have been affected by the illness. And she started a movement of speaking to the Asian community, moving from community to community to bring light to caring for people and carers touched by Dementia.
Speaking at a local community centre, The Shishukunj Bhavan , Lena cleared up some common misconceptions with her audience and started with a sheet of dementia questions for her audience to answer, the most common being that dementia and Alzheimer’s are one and the same. In reality, Alzheimer’s is a form of dementia. It affects 62% of those diagnosed which explains its prevalence in the news and why we might have heard of it over any other type. She clarified that “dementia itself isn’t one single disease, it is a whole series of symptoms and it can manifest itself in multiple different ways. There are over a hundred types of dementia that exist, you may have heard of vascular dementia, Lewy bodies, frontotemporal dementia and Alzheimer’s” – the four most common forms.
She informed her audience that dementia is progressive, which means symptoms increasingly get worse over time. While every type of dementia is progressive, they can each manifest and develop in different ways. Alzheimer’s for example, is a step by step process and usually starts by affecting one’s short term memory. Vascular can be very rapid at times and a person can change suddenly overnight. Knowing which type of dementia someone has is important, not only for diagnosis but for the long-term management of the disorder. For reference, symptoms of the terminal condition include memory loss, confusion and problems with speech and understanding.
Lena emphasised that dementia is “by no way a natural part of aging. Cognitive decline may occur because the way we process things and move, get slower as we get older, but not everyone who has dementia is old”. In fact, there are over 40,000 people under 65 with dementia in the UK and while quite rare, people can get it in their 20s and 30s.
She interacted with the audience throughout her talk and asked what she felt the two biggest reasons within the Asian community are preventing them from getting help. Like mental health, fear and stigma are the two biggest reasons preventing people from seeking help shouted out the members of the crowd! Lena explained how for many, the biggest barrier is admitting something is wrong in fear of the reaction from everyone around them. This is especially problematic for dementia because it is a progressive disease. There is no pause button for symptoms and without intervention they will continue to deteriorate at a rapid rate. Avoiding or delaying help is also a set back because you restrict yourself from accessing preventative measures that can make a significant difference she told her crowd.
Lena emphasised that it is important to not only consider the people living with dementia but the carers too. It is a life changing condition with profound impacts on the individual and their surrounding network. It could happen to any one of us which is why we need to be mindful of the signs and symptoms.
At one of her talks, Lena shared that “the world has become really disassociated and disconnected even though we’re more connected than ever. I feel we need to turn back the clock and start really looking after one another”. With the willingness to seek help and a supportive network, ‘Rise.IQ’ are showing people it is possible to live well with dementia.
Be sure to stay up to date with British Asia News as we will be speaking to Lena Chauhan in more depth, learning more about her background and expertise in health and following her around educating the Asian Community and reaching out to many more Asians.