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

Product Information

Last year, over 10 million people trusted us to help them with some of the biggest issues in their lives. Learn more about how we help. How your support helps I have to say I didn't enjoy this book as much as Wendy Mitchell's first, Somebody I Used to Know. This one is somewhat repetitive. For enjoyment I would give it 3.5 stars but because of what I learned, and because I am amazed that she was able to write both books since her diagnosis of Alzheimers, it is a 5 star. 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.’

I think this book works well as an extension to Wendy’s first book as parts of the writing expand upon some of the strategies she uses to navigate life that she had previously written about. Do allow us to finish our sentences without finishing them for us, and don’t talk to our caregivers, instead of us, as if we weren’t there. 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. And please don’t be afraid of silence: silence is the friend of someone with dementia, it allows us to think. This is why I don’t like talking on the phone any longer and prefer Zoom - people can’t see me thinking on a phone conversation. Please never stop speaking to us, or visiting us I do travel around the country a lot going to conferences on dementia but people see me and think it is easy for me. In the UK, dementia now affects one in 14 people over the age of 65 and one in six over 80. If not directly impacted by dementia, most people know a friend or family member who has been affected. It's written in very digestible sections (I rarely read non fiction) and in a very accessible way. Not upsetting or scary as I originally feared. Not at all.

What were those methods?

I used to worry and try to fix things for everybody before, but I don’t tend to worry about anything now. I get anxious about it, but I think, “I can’t do anything about it now,” so I tend not to try and fix things for others. I had a bad accident before my dementia – I got hit by a car – and from then I learned things were out of my control. I do worry about my family, but I don’t worry about life or myself. I don’t worry about my future, whereas I used to before.” I was a very, very work-orientated person – I suppose I was a workaholic. I adored my work and the NHS. I was also very fit and active; I used to run every other day. I didn’t smoke and I didn’t drink, so I didn’t fit the profile of what you imagine from someone being diagnosed with dementia.” What did you know about dementia at that point? Wendy continues to amaze me, 6 years after her dementia diagnosis she is more active than ever, campaigning for better dementia care, educating healthcare professionals and being an amazing advocate/ambassador for dementia patients! Like Somebody I Used to Know, this is a book of hope. But there is a sense of intense labour, struggle and pain behind Mitchell’s pieces of advice and consolation. I can’t begin to imagine the how hard she has to work to be the Wendy Mitchell she has forged out of her illness – the one who has become a beacon of hope for thousands of people who live with dementia, who seeks joy in small things, takes adventures where she finds them, is open to her own vulnerability and humorous in the face of implacable decline (laughter is her best medicine). Yet she says that, in spite of the “haze” in her brain, in spite of the effort and weariness, in spite of times of confusion and distress, in spite of knowing she is edging towards the darkness, in spite of all she has lost and continues to lose, she is in many ways happier now than she has ever been, liberated from the shyer, more self-conscious and timid self of that somebody she used to know.

She criticises the diagnostic process as being “far too clinical” and makes it very clear that there is much room for improvement in professional language used around the condition – for example, terms like “challenging behaviour” – and in attitudes towards people with dementia.’ If you only look at that small part of someone - memory loss - you're missing out on supporting them in so many ways and making their life so much better and in return, your life so much better." my contentment in the moment, my ability to find the best that this disease has to offer, makes me feel guilty. I have been living with dementia for many years now, and, as I have said so many times, my glass half-full approach is one of the ways that I might appear to cope better than others.” Like many people, Mitchell knew nothing about dementia when she was first diagnosed. She and her family were overwhelmed by the negative tropes associated with the condition and long-term prognosis. At the time she wasn’t made aware of all the avenues for support open to her. In writing this book, Mitchell wanted to pass on the insight she’s gleaned from the past seven years. It’s not, as she writes, “an exhaustive list of answers to your questions, but it’s a good place to begin”.When people think of dementia, they immediately associate it with memory. Few people realise, for example, just how it changes our relationships with our senses, our emotions, our communication. Few people understand the importance of a good environment – both inside and out – after a dementia diagnosis, and the small changes that can make a big difference. Unless you tell them, or talk about it, people will never know the difference dementia makes to your relationships – and how to make them work better. And if you don’t know any of this at all, how can you be responsible for your attitude?” I don’t remember how long I had been chewing, or how much longer I needed to chew. The result was, too many times, choking on food that I had not ground down enough before attempting to swallow. It’s hard enough to concentrate on eating without the extra effort it takes to cut and chew. Meat had to go, and was replaced by fish.” Wendy has released a second book, called 'What I Wish People Knew About Dementia', which looks at the many misconceptions people have about life with dementia. Legs up,’ Mr Pink Man shouts in my ears as we come closer every second to the viewing area. I’m confused because I thought the landing spot was behind the woods. If I’m with my daughters, people will speak to them instead of me, but my daughters are very good at saying, ‘Well why don’t you ask mum?’ When people hear the word ‘dementia’ they forget there’s a beginning and automatically think of the end. There’s so much life still to be lived, albeit differently and with lots of support. I always tell people they should never dwell on what they can’t do; I can’t drive or cook or do numerous other things, but there are lots of other things I can do, so I concentrate on those.” How did the idea for writing a book come about?