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. That changed on 31 July 2014, the day Wendy was told she had early-onset Alzheimer’s, aged 58. Dementia camouflages itself until the neurological damage is well underway. There is no cure. Unlike with cancer, the diagnosis comes without aftercare. Despite the fact that it afflicts one in Dementia is described as early onset or young onsetwhen the person displays symptoms before the age of 65.

I kept shaking my head at all these effects that would never have occurred to me. You tend not to think beyond memory. Food is a major issue for Mitchell: she has to set iPad reminders to eat, and chooses the same simple meals every time. Pasta bowls work best for people with dementia as they can get confused trying to push food around a plate. She is extra sensitive to noises and may have visual and olfactory hallucinations. Sometimes she is asked to comment on dementia-friendly building design. For instance, a marble floor in a lobby looks like water and scares her, whereas clear signage and bright colours cheer up a hospital trip. Wendy has found peer support from other people living with dementia to be hugely beneficial, saying: “We share solutions all the time and we listen to each other. We are non-judgmental and we are all going through the same thing. If one of us forgets who the prime minister is, it really doesn’t matter.” But Mitchell tells us that there is a bright side, and she teaches us how to get to that side. She explains the problems caused by the inability of a dementia patient to find her co-ordinates or recognise landmarks when out walking; but that does not stop her from her long walks in the countryside. Another 2019 French study found that when using odour to enhance recall, people living with Alzheimer’s were able to retrieve a higher number and more specific recent memories, as well as those relating to their childhoods and adult lives.”

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I now also understand that her taste buds will have changed: her beloved cup of tea probably tastes like swede. When she’s eating with other people, all she hears is the deafening clang of cutlery. Revelatory . . . There are many books about dementia that focus on its biology, its clinical subtypes, its social dimension, its effect on carers and loved ones. But there are few memoirs written by the people with dementia themselves. Mitchell's joins a burgeoning literature of medical memoirs that, like the finest travel writing or reportage, transport the reader to another world that they may or may not visit one day

Now in her mid-sixties, she is holding on to her independence, still living alone in her village and taking regular country walks with her camera (in northern Europe, a third to half of those living with dementia live alone). 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. For cost savings, you can change your plan at any time online in the “Settings & Account” section. If you’d like to retain your premium access and save 20%, you can opt to pay annually at the end of the trial. When Wendy Mitchell was diagnosed with Young Onset Dementia at the age of fifty-eight, her brain was overwhelmed with images of the last stages of the disease — those familiar tropes, shortcuts and clichés that we are fed by the media, or even our own health professionals.But I know my job as her daughter is to enable her to remain independent, and to do this, I have to let go of fear of what could happen. I used to constantly worry what would happen if she breaks a bone, hits her head, or worse. 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. So now, I just think, whatever is going to happen, will happen. As long as there is joy, it’s worth doing. I must admit, though, that sometimes I do walk in front of her so I can’t see all her little stumbles.” People with dementia (and people who live with and care for them) know that much of the suffering and havoc that the illness can bring comes not from the condition itself, but from the way the world treats people who live with it. Mitchell learned this the hard way: her life, and her sense of who she was in that life, was demolished when she first got the diagnosis of early onset dementia and it took her many years to work out strategies that enabled her to “live well with dementia” (though she dislikes that phrase for its implication that some people fail to live well). Peter says, ‘I thought I knew quite a lot about dementia having had it thrust into my life in 1990, but I have learned an amazing amount from this book on many simple aspects of a person’s daily life with dementia. ‘I only wish it had been available to me all those years ago when dealing with my father’s dementia. If it had, I would not have made so many mistakes. I hope others discover it in time to help their present situations.’ I have taken her advice and created a room where I can feels calm and happy, with family photos, a warm blanket, and a cup of tea, especially on days when my legs don't want to work as they should. 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

Change the plan you will roll onto at any time during your trial by visiting the “Settings & Account” section. What happens at the end of my trial? She also writes about the role that family members play in a dementia patient’s life. It is important for both patient and his/her carer to know what dementia is, and the toll it inflicts on the patient and those who care for them. Mitchell also gives hope that dementia patients are still capable of living alone. But one needs to take precautions; and also maintain connections to the world. Her biggest piece of advice to carers and loved ones is 'Live in our moment because we can't live in yours'. Personally, I don't think we will ever fully understand what an individual with dementia is contending with, and we will always be learning new aspects about the disease. This is the disease that claims many, and it is truly devastating to witness, whether you are a relative to that person, or a health professional. I worked in specialist dementia settings for over ten years, and I don't regret any of it, in fact, it sometimes crosses my mind whether I could have done more.

What were those methods?

Let’s start with the bad day… I describe it as a fog descending on the brain. On those days little makes sense in the world around you and you can quite easily just curl up and wait for that fog to lift. Good days are days like this; all this travelling and talking to people [about the book] is like doing Sudoku because it exposes my brain to different environments, different people, different conversations – so it exercises my brain, even though it’s exhausting.” What are you biggest frustrations with the way people interact with you as someone with dementia? Like Mitchell, What I Wish People Knew About Dementia is both informative and full of heart. Those who read it will learn more about dementia. I suspect, they’ll also learn about themselves. Wow. This is a must read, especially if you have experience with dementia. It will twist your thinking about dementia. It will attempt to make you stop treating it as pure doom. It also very easy to treat people with dementia liken they are incompetent children and that isn't right. Like I've seen people talk about their loved one with dementia as if they are silent, not all there dolls. Talking to them the same way you would talk to a baby under one or a toddler. It is very easy to stop treating them as an adult with respect as soon as the diagnosis is given. 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. It can easily drive you mental. And I can't imagine how hard it is to have that daily and from your closest loved ones. It's a hard balance to do due to the effects of the disease, but I think there is something in focusing on what the person can do vs can't do. As no one wants to focus on the can't do too much. It's depressing and upsetting, it makes you feel utterly hopeless. I mean, I even a similar thing with my pets, for every no, they get an acceptable yes option, which works fabulously e.g "You can't scratch this, but you can scratch this." Not that I'm comparing humans and pets. But focusing on the positive, rather than all the negative, seems to be key. It was obviously very devastating, but it was also, bizarrely, a relief because it finally gave me a name for what was happening to me – ending all the ifs, buts and maybes. I knew what I was dealing with and could plan my life around finding out as much as I could.” What surprised you the most about the way in which clinicians deal with those with dementia? Wendy used to work as a manager for the NHS at a hospital in Leeds and reveals “I used to be renowned for having a brilliant memory but it started letting me down badly. I came out of my office and I forgot where I was.

It’s not unusual for carers to feel disconnected from the person they are supporting, unsure of how to demonstrate the bond between them, but a hand massage is a way of showing this. It says something more meaningful than words, perhaps: it shows that someone is taking their time to relax with you, and that the recipient is worthy of that time. It actually speaks a thousand words.”Notes on Reading The author has early onset (60s) dementia. It has robbed her of a lot of her ability to do things - she can't speak with fluency, can't eat with a knife and fork, can't remember what she's put in the microwave, can't remember she put anything in at all. But her ability to type has not been affected at all, the tangles and plaques have not reached that part of her brain, so she communicates as well as she ever did. That experience] could be very frightening but if you embrace that moment, as I did, and I was just in the presence of my father for a few seconds, I saw it as a wonderful moment rather than something to be feared." My community] make me feel safe enough to go walking wherever I want to. If I get disorientated, I can just ask the next smiley face coming towards me and say I'm having a bit of a bad day. Would you point me in the direction of my home, please?'" Dementia isn't a consequence of growing old, but the risk of dementia increases with age. Most people who are affected by dementia are over 65, but there are many, like Wendy, who show symptoms when younger.