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What I Wish People Knew About Dementia: From Someone Who Knows

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After you hang up on this call, I will forget our conversation,” says Wendy Mitchell. “In fact, I will forget you altogether. But I won’t forget the way you made me feel. That’s what people don’t realise about a person with dementia. The emotions are still there.” Wendy emphasises that everyone is different,’ says Caroline, ‘just as they all were before dementia. In this book, she includes other people’s experiences as well as her own.’ When b Fear and anxiety might seem intertwined in some way – perhaps we get anxious about the things we fear the most. But without that fear, there seems to be less to be anxious about. Now what my friends and I worry about is having control taken away from us. We fear being taken out of our own homes and put into a care home. We fear falling over the edge. But it’s a very human thing to worry about the loss of self. ”

It is said that only 7 per cent of our communication is verbal. Fifty-five per cent of it is body language and 38 per cent is tone of voice. I know that as I sat with my dying mother, there was no need for any words at all. The touch of my hand on hers in that moment said everything there was left to say. She just needed to know that I was close, and that she wouldn’t be alone when death finally came to claim her.Wendy says that although she's always been "glass half-full" in outlook, her personality has been changed for the better by dementia - she is now more open and more relaxed with herself.

No one should underestimate the psychological effect that words have. Wendy Mitchell Having experienced symptoms for some time, how did you feel when you were diagnosed? So little is known about the lived experience of people with dementia,” says Mitchell. “Even though healthcare professionals are starting to understand the workings of the brain, the experience of those with the condition can be so different from the ‘tragedy’ of diagnosis and treatment”. After 18 months of different memory tests, there was a SPECT scan which showed a slowness in my brain.” What people with dementia need is help and support to continue with the things we love – in my case, walking in the countryside. My main message to the family of someone with dementia is: don’t give up on us! Don’t ‘disable’ us before time What I Wish People Knew About Dementia seeks to help readers both understand the science and empathise with the real-life implications of the disease. Occasionally heart-breaking, sometimes hilarious, Mitchell’s little snippets from her friends are always grounded in reality. Many will be instantly familiar to those who’ve experienced a dementia diagnosis personally.

In the book, you discuss leaving recordings for your daughters. How important do you think this process of leaving something behind is for those with dementia?

Wendy is an ambassador for the charity, which campaigns and funds research to find a cure for dementia and supports people living with it today. Why? Because so much of what we read about dementia is written by observers not those living with it. And understanding what dementia might be (there are many different forms) and how it might manifest (not the same for everyone) is not the same as reading about how it impacts on the individuals living with it.

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