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

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Despite spending 20 years working for the NHS, where she would train nurses on how to roster staff, Wendy Mitchell admits the word ‘dementia’ had never entered her vocabulary.

When I visit her in my black coat, black scarf and black trousers, I look like a floating head, half of which is covered by a mask. But, at the end of the day, if I had been stood by her side, wrapping her in cotton wool, she would not have had any joy in that walk. If you’re talking to me, don’t ask lots of questions in a row, because I’ll only remember the last one, and that’s the one I will answer.

The book is divided into six sections – Senses, Relationships, Communication, Environment, Emotion and Attitude – with each section subdivided into easily assimilable packages of guidance. Things just weren’t right, and then when I was out running, my legs and my brain weren’t talking to one another and I’d end up falling flat on my face.

If [a person with dementia] is saying 'I can smell fire over there… the place is going to burn down', the person with them will look round and not see fire, but by telling us, 'no, no, you're being stupid, there's no fire' it just makes us more anxious because its the reality for us that we can smell fire. I was so pleased to read that Wendy began to see her condition as a gift, a chance to experience the world with fresh eyes and embraced her new way of living, devoting her time to educating doctors, caregivers, and other people living with dementia, helping to reduce the stigma surrounding disease, and paving the way for those who are following to have an easier ride. I now understand that dementia isn't just about memory loss and confusion, but includes hallucination, delusion, depression, paranoia and disorientation.There is a really interesting section on moods which I could resonate with, as with experience, I worked with many individuals that often had low moods, that sometimes turned extremely aggressive. Este livro não é um manual de diagnóstico, é uma fonte útil de informação baseada na experiência pessoal e na evidência científica.

I’ve learnt a lot from reading it and feel I will better be able to understand some of the changes which may affect our friend. And that must be so frustrating, as someone who is disabled, with various contraptions that shows my disabledness, I have had people ignore me like I wasn't there, to talk to the person I was with. But there is a sense of intense labour, struggle and pain behind Mitchell’s pieces of advice and consolation. When Wendy was diagnosed with Dementia in July 2014, she had no idea where to start gathering information about her disease.The biggest take away I got from this is that people with dementia are still capable of doing much more than we might realise, and by supporting "positive risk taking" we can contribute to a higher quality of life.

Wendy acknowledges this early in the book and she includes short interview responses from some of her friends with dementia alongside her own, which helps remind us that what she feels will not necessarily be the same for everyone - different people with dementia still have as diverse a range of personalities as anyone, after all. I’m hoping to show the reality of trying to cope on a day-to-day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. I used to worry and try to fix things for everybody before, but I don’t tend to worry about anything now. Touch becomes more important than ever: a ten-minute massage makes all the difference to someone who is feeling disengaged from their world. I used to be renowned for having a brilliant, encyclopaedic memory – I’d never forget anything – and suddenly it began to let me down very badly.She hopes her new book What I Wish People Knew About Dementia will help people understand and be less fearful of the condition.