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Understanding Dementia 2019

“I am still me”

Photo credit: iStock / Getty Images Plus / DGLimages

Chris Maddocks

Alzheimer’s Society Supporter

Chris Maddocks lives with dementia and Parkinson’s. She shares her thoughts on how support from others can overcome isolation and loneliness.

I was diagnosed with young-onset vascular dementia when I was only 60 years old, in July 2016.

I didn’t really understand what was happening to me before then. I went to my GP, where I met Karen from Alzheimer’s Society, who was setting up an information stall. She offered me a leaflet on vascular dementia. I read it and thought – that’s me.

I felt scared, lonely and lost after my diagnosis. I spent three months depressed and afraid of doing anything on my own. I didn’t have anyone to talk to and I thought I had just been given a death sentence.

After my diagnosis, I was told I couldn’t work

I became a prisoner in my own home and I was told I could no longer work, due to my diagnosis. I took huge pride in my career, so it was a major blow. It was difficult to socialise with people when I didn’t know myself and when people struggled to find the right thing to say. My life had completely changed.

But over time, and with the support from loved ones and Alzheimer’s Society, I was motivated to get out into the local community to meet new people and continue living life to the full. It was then that I realised, I was and am still me.

My fighting spirit is back, and I want to help make a difference for myself and others living with dementia.

That’s why Dementia Action Week (20 – 26 May) is so important. There are small things that everyone can do to help me and others in the UK feel included in society.

I still like to play pranks on people

It only takes a single conversation with me to see that I’m still the old Chris. I still like to laugh and tell people funny stories and I still love to play pranks on people. I still express love to the people in my life, and I am always there to listen.

Of course, there are days when I just don’t want to talk, don’t want to go out and need some space to clear my head. But it’s by talking to people and feeling part of my community that I continue to live well.

People shouldn’t feel awkward when they ask me questions about dementia. They shouldn’t feel like they’re saying the wrong thing. It’s through feeling that my condition is understood that I have been able to support others with dementia and have the strength to tell people about what I’m going through. Now, I’m calling on you to join the conversation about dementia and feel you can talk to me and ask me anything.

My top three tips to create a more inclusive society for people with dementia:

  • Be kind and thoughtful

Being kind and having a smile on your face can go a long way. Having dementia doesn’t mean losing our personalities and the condition can affect people in different ways. Too many people are worried about ‘saying the wrong thing’, but ultimately, we enjoy having a chat as much as you do, and you could make someone’s day.

  • Take the time to get to know the person you’re speaking to

I’m still me. When you’re talking to a person with dementia, you need to get to know them just as you would anyone else. Always talk to and address the person with dementia and not just the person with them.

It’s true that some people may have trouble finding the right words, or that their vision or hearing may be affected – but take the time to learn what support we might need.

  • Be part of something big

By speaking to someone with dementia, you will understand how much we still have to offer and how you can easily help us. Alzheimer’s Society is on a mission to create a dementia-friendly generation, so people like me can continue living a full and active life.

Unite with me and Alzheimer’s Society and become one of an incredible 2.8 million Dementia Friends, learn about the condition and you might just change the world.

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