THE BLOG

Dementia Isn't A Dirty Word

07/05/2017 21:22 BST | Updated 07/05/2017 21:22 BST
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Dementia is set to be the 21st Century's biggest killer. In the UK, someone develops dementia every three minutes and too many people are facing it alone. It's a huge health challenge and one that will affect all of us. It certainly affects me every day of my life.

As Alzheimer's Society launches its biggest ever awareness campaign, United Against Dementia, I want to speak honestly and openly about the problems experienced in my life and in my community when it comes to dementia. My Mum is Somalian, and was diagnosed with Alzheimer's in 2016.

Mum was living independently but in 2015 things came to a head. She was acting erratically and out of character.

She kept saying someone had broken into her house and was trying to kill her. Her behaviour became stranger and stranger, so she moved in with us. She started talking to characters on the television. If the person on the screen was happy and smiling mum would wave to them. No-one understood what was causing her behaviour as she looked fine physically.

Her health declined very rapidly, the disease took hold very quickly and soon she couldn't do anything for herself. I have to wash her, dress her and get her to eat. I took her to the doctor where they referred her to the mental health team who diagnosed Alzheimer's.

One of the biggest issues we faced from the outset was the language barrier. My mum, who only speaks a little English, needed the information in Somali, but there was no appropriate language to explain to mum that she had dementia. I told mum her brain was getting older. My mum's generation don't tend to speak much English and don't get it. They brushed it under the carpet. It felt so isolating for me. 

In my experience, people often don't understand dementia and there's a stigma attached to it.  There is no acceptable word to describe 'dementia' in Somali. It translates as someone who is 'crazy'. You can't rewrite a language - so it's important we raise awareness in a sensitive way.

Traditionally in my culture, we're brought up to be very private people. That means that generally we don't talk about our health - and often we don't want to be seen as vulnerable. That's precisely why Alzheimer's Society's United Against Dementia is so important. We desperately need to improve public understanding; to remind people that this is a condition for which there is no cure; to encourage open discussion and debate. Dementia isn't a dirty word, yet in so many communities the world over it's sadly seen as such.

I was so isolated and felt I had nowhere to turn as Mum's dementia progressed. I was desperate for answers. Eventually, I found Alzheimer's Society who were incredibly helpful.  

Yet more education and an improved understanding is desperately needed. There is still a misconception within our community that we don't get the condition. That affects others - not us. But people need to understand that dementia knows no boundaries. It can affect anyone anywhere. 

Now, I get through it by laughing each day and I am determined that other families shouldn't be afraid of the stigma. This is my personal experience and I want people to understand.

The hardest thing is to be faced with stigma, scepticism and people avoiding uncomfortable conversations. The more people speak out - the more others might be brave enough to open up and get help and support.

I hope by sharing my story I can unite people from the Somali community and try to improve the situation for other families.

Khadra is speaking out as part of Alzheimer's Society's United Against Dementia campaign. Find out more at Alzheimers.org.uk