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This World Alzheimer's Day, It's Time To Shine A Light On Dementia Stigma In The Asian Community

HuffPost UK logo HuffPost UK 21/09/2018 Kamel Hothi
a person posing for the camera © Getty Images/Blend Images Dementia is a global health crisis and one of the leading causes of death. 50 million people live with dementia worldwide, with someone developing the condition every three seconds.

Globally, diagnosis rates are low, research is underfunded and people are receiving sub-standard or no care, with stigma in many communities remaining rife. In some countries, there’s not even a word for dementia.

The rural farming community in Northern India where I’m from is a prime example of this – dementia is misunderstood and education about the condition is limited. With increased life expectancy there are more people than ever in India living with dementia.

Despite this, attitudes towards the condition have not changed. People view memory loss as a normal part of ageing, and there can be a sense of embarrassment when a loved one displays symptoms.

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There is very little support available and people with dementia are often locked in rooms for whole days at a time and kept away from the wider community. As a result they become lonely, depressed and isolated. In India, some people with dementia are even accused of witchcraft and we know that in other developing countries, people are at risk of violence and attack if they have dementia. This shows how vital it is for us to raise awareness and understanding of the condition.

My uncle had dementia and I saw first-hand the impact it had on him and his family. I have such fond memories of him as a fit and active man who loved watching his grandchildren play football. He would walk to the sports ground to watch them play and he had an incredible knowledge about the game, which was rare for someone of his generation. He also spoke a bit of English, which I envied because my parents and in-laws couldn’t speak English with my children. He was such an intelligent, active member of the community and dementia completely transformed his life.

The first signs of memory loss and confusion were pointed out by my uncle’s daughter-in-law, who was his main carer. In hindsight, she said she should have spoken out sooner and louder because she knew something wasn’t quite right. However, the fear of upsetting her family or being labelled as someone who was finding excuses not to care for her father-in-law held her back.

In my experience, when a woman living in a South Asian community marries and leaves her own family, one of the most important asks from her parents is to be ‘a good daughter-in-law’. It’s not surprising that this sense of overwhelming responsibility prevented her from asking questions or flagging concerns to the rest of the family. The pressure on my uncle’s daughter-in-law only increased as his dementia progressed. We know that women are disproportionately affected by dementia and contribute 58 billion informal care hours (care provided by loved ones). This isn’t sustainable.

© Provided by Getty Families like my own, who moved to the UK from India, brought these attitudes towards dementia with them. Misinformation prevents people with the condition and their carers seeking help or receiving a diagnosis. So much needs to happen to tackle the stigma and isolation of people living with dementia in South Asian communities in the UK and abroad.

In the UK we have made great strides in becoming dementia friendly – there are over 2.5 million Alzheimer’s Society Dementia Friends and over 330 Dementia Friendly Communities taking action to ensure people with dementia can live a life they want in their community. But action doesn’t stop on our doorstep – Alzheimer’s Society is growing this movement globally and more needs to be done. We urgently need to continue to tackle stigma and injustice – every country in the world needs to become dementia friendly and roll-out Alzheimer’s Society’s Dementia Friends programme, so no one with dementia is left behind.

I recently had the privilege of becoming an ambassador for Alzheimer’s Society, and am also proud to be a Dementia Friends Champion. This World Alzheimer’s Day, I’m calling on global governments and individuals to tackle stigma and uphold the rights of people living with dementia.

I urge everyone to speak out and raise awareness to improve the lives of people living with dementia not just in South Asian communities, but right across the globe. Together we can and will unite against dementia. 

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