What I Wish People Knew About Dementia

by Wendy Mitchell

THE SUNDAY TIMES BESTSELLER'Essential reading' SUNDAY TIMES MAGAZINE'A book of hope' OBSERVER'A marvellous tour of insights' THE TIMES'A must-read . . . I couldn't recommend it higher' MICHAEL BALL'Wendy Mitchell is a life-saver' FRANCES WILSON, AUTHOR OF BURNING MANWhat can a diseased brain tell us about being human, living our own lives better and helping those with dementia get the best from theirs?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 her diagnosis far from represented the end of her life. Instead, it was the start of a very different one. Wise, practical and life affirming, What I Wish People Knew About Dementia combines anecdotes, research and Wendy Mitchell's own brilliant wit and wisdom to tell readers exactly what she wishes they knew about dementia.

Genres: Nonfiction, Health, Psychology, Memoir, Science, Medicine, Mental Health

241 pages, Kindle Edition

First published January 20, 2022

About the author

Wendy Mitchell spent twenty years as a non-clinical team leader in the NHS before being diagnosed with Young Onset Dementia in July 2014 at the age of fifty-eight. Shocked by the lack of awareness about the disease, both in the community and in hospitals, she vowed to spend her time raising awareness about dementia and encouraging others to see there is life after a diagnosis. She is now an ambassador for the Alzheimer's Society. She has two daughters and lives in Yorkshire.

Reviews

[Petra X · Rating 5 out of 5]

Review The most interesting thing I learned from this book is that Alzheimer's may badly affect a person's ability to do many practical things - the author found a knife and fork impossible, and that how they seem to other people, for example the author's poor speech, might be of a person quite far along the road of dementia, it isn't like a water level where everything deteriorates at the same rate.

The author's ability to write at a professional level was not affected in any way, she could type out her thoughts perfectly and wrote two books, this the second. She could travel around the country, taking pictures everywhere so she could see visually where she was, where she should be and where she had to return to and then give a speech. She couldn't speak off the cuff, but could read what she had typed out. Hence her miraculous-seeming ability to write this book and read it for the audio edition which I had.

Therefore it is important not to treat the person with dementia as though all of them was affected (although it might be). There is much in this book that gives advice and tips on how to be with, treat and make allowances for those with a brain degenerative disease. She discusses not just the practical, but also respect for the afflicted, mood, philosophy and the adjustment all connected to the person will have to make, themselves included. Even when they seem to be in denial.

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.
I wish Wendy Mitchell many years of health, and look forward to her third book.
__________

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.

The book is quite enlightening, I had never thought of how the senses might be affected, noises, hallucinations of smell, all kind of things. So it is interesting, but repetitive and although not in any way 'poor me' it is very much 'see things our way' and although that is the purpose of the book, it is hammered in continually.

My aunty wrote to me yesterday. She is 84. My uncle's sight has almost gone and although he is more or less ok in the day - although the living room is now his bedroom - at night he is completely possessed by the demons of dementia and has to have a carer rom 10-7. My aunty who has been married for 61 years is so worried about how long she can keep him at home, how long before he will have to go into a home.

Her mother - my grandmother - and her brother (world famous in anaesthetics) both died of or with dementia, my uncle was only in his 60s. And I've just heard one of my godfather's who hasn't been seen in public for many years now, has just died from Alzheimer's. It's like cancer, it's like six degrees, everyone is touched by one or the other or both.

[Jo · Rating 4 out of 5]

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.

Dementia is different for every individual, so they must never be put in one basket, like a one-size-fits-all approach, because that isn't how it works. I have met some wonderful people over those years, the youngest person being just aged 41 at diagnosis. I often wonder how that person is doing now. I also knew a lovely lady that had lost the ability to form words, and in order to coax her down to enjoy breakfast, I had to walk her down whilst singing her favourite song and dancing, because music is all she really remembered.

Wendy Mitchell is an inspiration, especially to educate others whilst living with dementia herself. I love the way she separated the chapters to speak of everyday things like smells, taste, touch, things that we sometimes take for granted. 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.

I enjoyed hearing things from Mitchell's perspective, and how people changed towards her once she had a diagnosis. It's funny how some people back off the moment a person says 'Dementia'. I give praise to Wendy Mitchell for writing this fascinating book about a disease that most of us don't know enough about.

[Tomasz · Rating 4 out of 5]

Autorka odwołując się do doświadczeń własnych oraz znajomych jej ludzi rozwiewa mity dotyczące osób żyjących z demencją. Dużo się z tej książki dowiedziałem, zwłaszcza w kontekście języka włączającego, ale również na temat codziennego funkcjonowania lub sposobu odbierania zmysłów przez takie osoby. Jest tu kilka odwołań do badań i innych źródeł naukowych, jednak podstawą jest perspektywa autorki, wraz z radami i wskazówkami dla rodziny i otoczenia.

[Jennifer (JC-S) · Rating 5 out of 5]

‘When you’ve met one person with dementia, you’ve simply met one person with dementia. We’re as different as we all we before dementia.’

A chance conversation led me to Wendy Mitchell’s first book (thanks, Jill) and to Wendy’s blog https://whichmeamitoday.wordpress.com/ . I follow Wendy’s blog partly to read about her work as an advocate for dementia sufferers and partly to enjoy the magnificent photographs she takes on her (almost) daily trundles around the village where she lives in Yorkshire, UK. I find Wendy inspirational and have been eagerly awaiting the publication of this book. Wendy was diagnosed with dementia in 2014.

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.

‘I hope this book will at least give people a start.’

The book is divided into six sections: Senses; Relationships; Communication; Environment; Emotion and Attitude. Each of those sections has subdivisions on different aspects. Wendy writes about what works for her including writing things down, setting alarms as reminders, substituting no-tie shoelaces when she was unable to tie her own. Wendy also writes about visual and olfactory hallucinations. As Wendy explains, dementia plays tricks on her brain. One of her tips with visual hallucinations is to take a photograph of what you think you can see ‘and it it’s in the picture, it’s most likely there in real life.’ Another tip is to walk away for thirty minutes and returning to see if what she saw is still there. One of the instances Wendy recounts is of seeing her father on the lawn. He had been dead for twenty years, but the vision returned some fond memories to Wendy.

This is an uplifting and inspiring book. Wendy lives with her dementia (she lives alone) and can find joy in small things, as well as tackling some big adventures. I loved her recounting of her skydiving adventure (which I first read on her blog).

‘Up here, there is no dementia… I am flying, free from all that binds me to the earth.’

Wendy also writes of others she knows who live with dementia, of devices that can help, of finding joy in the present. Dementia may be an irreversible neurological condition, of relentless decline but there can still be enjoyment in life. Wendy is proof of that.

Highly recommended.

Jennifer Cameron-Smith

[Joana · Rating 5 out of 5]

Nunca dou estrelas a memoirs mas este foi excecional.

Wendy Mitchell, aos 58 anos, foi diagnosticada com demência vascular precoce e Alzheimer. Com medo do seu diagnóstico, foi pesquisar e eis que ficou estupefacta com a falta de informação que havia sobre o tema. Por isso, fundou um blog sobre toda a sua experiência desde então, e escreveu 3 livros, sendo este o segundo.

"O que eu quero que todos saibam sobre Demência" não podia ser um título mais transparente: é literalmente toda a experiência de Wendy explicado a todos os que não a têm e a quem foi diagnosticado recentemente. Wendy escreve sobre como as suas emoções mudaram (desde a perda do medo e da raiva à intensa ansiedade continuamente presente), à relação consigo própria, com as filhas, com os sentidos (aprendi TANTO nesta secção, não fazia ideia) e como a sua vida deu a volta depois do seu diagnóstico.

Essencial para quem quer conhecer mais sobre esta doença e não sabe por onde começar a pesquisar, ou para quem conhece alguém que tem demência e gostaria de perceber por que tempestades o outro está a passar.

Wendy é um mulherão. Levou o seu diagnóstico como algo positivo (depois do choque inicial) e conseguiu aceitá-la, transmitindo essa positividade e esperança neste livro, o que eu agradeço mesmo de coração ❤️

Infelizmente, Wendy faleceu em Fevereiro deste ano.

[Julie · Rating 4 out of 5]

Wendy writes of learning the hard way, through first-hand experience of the sensory changes that occur as part of the disease of dementia. She wished someone had made her aware of these potential changes, as foreknowledge would have made the experience less frightening.

The diagnosis of dementia “will not change one life: it will change all of those around us.” It requires aftercare and continuing support. “Dementia adds another dimension to that melting pot of character.” The person is first, the disease second. Dementia changes relationships. Wendy advises: “Keep talking.”

Some of Wendy’s practical suggestions:

“Colour and contrast matter for people with dementia.” An example is signage. Wendy noted that in one hospital, “many signs were in a silver colour pinned to a pale background, which all blends into one for someone with dementia.” A much better choice is “bright blue signs with bold white writing.”

“Swap cups and saucers for mugs; swap plates for bowls with rims that won’t let food escape.” Cups and saucers are fiddly, as you must be able to balance the cup on the saucer without spilling the tea. My favourite plates are the kind used for pasts as their edges are curved to keep pasta from sliding into your lap!

“Offer a choice of no more than two or three things.” Too much choice can be overwhelming and put a roadblock in the way of decision making.

“Keep disturbing noise and clatter to a minimum.” Peace and quiet fosters an environment of calm.

I loved reading about Wendy’s “memory room” where she kept her treasures; it was “a sanctuary where happy memories captured on film fill spaces on every wall.” It was a place where Wendy would go when she needed to “sit and feel calm, surrounded by the people and places that made [her] so happy.”

A true observation - “Retrieving a memory through olfactory stimulus can be more effective than through conversation alone.”

Wendy writes of not being a very tactile person until dementia changed her life. Suddenly, she wanted to hug everyone she met, at least people she instinctively liked. She especially wanted to hug people in gratitude who showed her kindness. “Touch remains more vital to all of us than we are perhaps willing to admit.”

“During my fogs, if I feel someone’s hand reaching for mine, guiding me if I’m confused, disorientated, lost or out of my depth in a new place or among new people, it can be such a relief.”

A gentle touch says, ‘I’m here.’

[Rebecca · Rating 4 out of 5]

(3.5) I loved Mitchell’s first book, Somebody I Used to Know. She was diagnosed with early-onset Alzheimer’s at age 58 in 2014. This follow-up, too, was co-written with Anna Wharton (they have each written interesting articles on their collaboration process, here and here). Whereas her previous work was a straightforward memoir, this has more of a teaching focus, going point by point through the major changes dementia causes to the senses, relationships, communication, one’s reaction to one’s environment, emotions, and attitudes.

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.

The text also includes anonymous input from her friends with dementia, and excerpts from recent academic research on what can help. Mitchell and others with Alzheimer’s often feel written off by their doctors – her diagnosis appointment was especially pessimistic – but her position is that the focus should be on what people can still do and adaptations that will improve their everyday lives. Mitchell lives alone in a small Yorkshire village and loves documenting the turning of the seasons through photographs she shares on social media. She notes that it’s important for people to live in the moment and continue finding activities that promote a flow state, a contrast to some days that pass in a brain haze.

This achieves just what it sets out to: give a picture of dementia from the inside. As it’s not a narrative, it’s probably best read in small doses, but there are some great stories along the way, like the epilogue’s account of her skydive to raise money for Young Dementia UK.

Originally published on my blog, Bookish Beck.

[Cliff M · Rating 5 out of 5]

How could I give a book less than five stars when it is about the lived experience of someone with dementia? To say ‘the book could be better’ would be like saying ‘you could be leading your life better’. Impossible. For someone with dementia to apply themselves with such determination to produce any book let alone this fantastic book, is incredible. Though it is sad that the author, Wendy Mitchell has the condition, it is in having the condition and how she has responded to it that Wendy has produced her life’s work. Wendy’s life has been more than worthwhile because of the way she has helped others understand dementia.

In particular, this book helped me understand how people with dementia FEEL when being patronised, diminished, and ignored by people who should know better (doctors, nurses, medical receptionists, volunteers, family and friends etc). And also how they feel when treated with respect and kindness. Just because someone has become non-verbal doesn’t mean they can’t hear and understand everything you say, both explicit and implicit…

Though it is not the point of the book, I was struck by how an inverse pyramid of arrogance towards those with dementia seems to exist amount those who they meet regularly. By that I mean the pyramid of status we hold in the West with hospital consultants and professors at the top, other healthcare professional in the middle, unqualified people who work in healthcare further down and so on, seems to get inverted when it comes to treating people with dementia in an arrogant and uncaring manner. Reading stories of medical receptionists bringing dementia patients to tears with their arrogance and belittling behaviours contrasts with the caring attitudes of many highly qualified and experienced hospital consultants. Of course, there are arrogant consultants as there are caring receptionists, but too often in these stories of the chronically ill we read about people who are paid to do the admin using their tiny bits of power to make people feel bad about themselves. I wish the behaviour of such individuals was monitored better and there were consequences for them.

Highly recommended.

[Judith Johnson · Rating 5 out of 5]

A friend of ours has recently begun to show signs of dementia, and I saw this book in our local library as part of a selection of books on display for Dementia Awareness Action week. 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. Added to this, I am very grateful to Wendy Mitchell, who lives with dementia herself, for amending my preconceptions about the condition - now feel less fearful about the possibility of being there myself one day.

[David Johnston · Rating 4 out of 5]

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.

I learned a few new things from this book about some of the hallucinations that may occur beyond a visual level and found it really accessible and clearly sectioned into different aspects that the reader can review. I would definitely recommend this to people living with dementia or to their friends and family as it is really helpful in informing the reader of what they may expect and how different actions may be perceived as helpful or unhelpful. In addition to Wendy’s experiences as anecdotes to support the topics, there are brief passages including the comments of her friends also living with dementia that inspire a positive, though not unrealistic, prognostication.

[Bi · Rating 5 out of 5]

De leitura obrigatória para quem tem alguém próximo diagnosticado com demência

[Paula Corker · Rating 2 out of 5]

2.5. This book was totally different to its predecessor. There’s an anger in this that I didn’t feel before. The first book was joyful even liberating, but that thread hasn’t continued.

[Emilie · Rating 4 out of 5]

Very enlightening, it's so much more than being forgetful, the way you process the world around you is completely different. A very well written step into their mind.

[Sally Tyrer · Rating 4 out of 5]

I read Wendy’s other book someone I used to know and was blown away by her courage and tenacity so was thrilled to be asked to read What I wish people knew about dementia, particularly as dementia is very pertinent to myself, my father had lewy body dementia and as a nurse I regularly look after dementia patients!
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!
Wendy doesn’t conform to the stereotypical idea of a dementia patient that many people have, she totally bucks the trend, living independently, travelling alone and speaking at conferences all aided and abetted by her trusty strategies that work for her, totally inspiring and a must read for anyone diagnosed with dementia, their families/Carers and health care professionals!
Thank you netgalley for this early read.

[averosalin · Rating 5 out of 5]

Five years before passing away, my grandma was diagnosed with Alzheimer's. Although our family has genetics of dementia, we often denied that it will be passed down through the family.
Reading this book felt like walking down on memory lane of remembering my grandma. I now understand that dementia isn't just about memory loss and confusion, but includes hallucination, delusion, depression, paranoia and disorientation. This would impact one's emotion, what they see and listen, as well as how they eat, walk and make friends (basically any activity on daily basis).
This book offers a positive approach to deal with people with dementia from a fresh perspective. That we shouldn't demand 'em to give up on themselves, and treat 'em differently by defining them by their disease.
A very recommended book to read for those who deal with dementia, or are interested to learn it.

[April Tsang · Rating 5 out of 5]

Changed my whole perspective on dementia. In mainstream media, we are often told what it is like to be a carer for dementia and all negative connotations towards the brain disease but never hearing stories about the person experiencing dementia. In this book, Wendy tells us her struggles with dementia and how it has affected her both positively and negatively. The book has made me empathise and respect people with dementia. It’s upsetting to hear when people are diagnosed with dementia they are projected to a death sentence when the disease itself is like any other disease and the symptoms are simply aging.

[Georgia Swadling · Rating 5 out of 5]

this WAY surpassed my expectations. the title caught my eye in my library ebook list and i thought i’d give it a try and i am so SO glad i did. as someone who works with children that seem to share a lot in common with people with dementia (difficulty communicating, intense anxiety caused or exacerbated by confusion, sensory processing difficulties, ‘challenging behaviours’ that tend to be their way of taking control of their lives the only way they know how) the respectful, compassionate, empathetic approach this book takes has a lot in common with my favourite resources about children with additional learning needs and difficulties. wendy is in the perfect position to educate people, those dealing with dementia, those who love people who are, medical professionals, service providers, the list goes on. dementia is likely to be a reality for the majority of us, whether it’s us ourselves or those we hold dear, if not now then down the road, so it’s in all of our best interests to grab the invaluable insights offered by someone like wendy with both hands. people with dementia deserve better and the only way to provide it is through understanding and effort.

below is a heartwarming excerpt that made me ugly cry to myself in a nice way, i hope you enjoy it too:

‘Dementia can be cruel in so many ways, yet every so often it hands us a gift in a most unexpected form. It was a bright day in the garden, and the sun was starting its descent, streaking long shadows of the fence across the lawn. I was pottering inside, shuffling from one room to another with a cup of tea in hand, trying to decide where to sit. Suddenly, through the glass of the double doors, something caught my eye. It took a while for the silhouette to make a recognisable figure, but it was then that I saw the unmistakable shape of him: a man, standing in the middle of my lawn - my father.
By then he must have been dead twenty years; should I have been frightened to see him in all his incredible, yet very ordinary detail? He was wearing his familiar baggy green cardigan, his happy, casual clothes that he wore to potter in his own garden shed, and on his face was the same relaxed smile. A tip of mine for visual hallucinations is to take a photograph on your phone or iPad of what you think you can see, and if it's in the picture, it's most likely there in real life. But in that moment, I did not want to break the spell. He stood, just looking at me, his hands hanging by his side, even the yellow of his nicotine-stained fingers visible from this distance. His hair was styled with Brylcreem, as it always was, black and shiny, the last of the sun reflected back from the black quiff that never went grey. I was reminded, as we stood looking back at one another, of the times I would climb into his lap as a small child and he would pay me a penny per grey hair that I could find and pull from his scalp. The memory of that moment returned me to the warmth of his touch, the sweet sugary scent of his Brylcreem and its bright red pot.
I don't know how long we stood looking at each other. It could have been minutes or hours - dementia has a funny relationship with time.
The logical part of my brain knew that what I
was seeing what was not real. I know the disease has a habit of playing tricks on my brain, and normally I would use my thirty-minute rule - walking away and returning half an hour later to know for sure whether what I saw was still there. But this time I simply stopped and stared, determined to enjoy this gift that dementia had granted me, because they are so few and far between. I felt not fear but an emotional pull to stay and spend some time in the company of my dear old dad again.
I play this cat-and-mouse game with dementia on a daily basis, and all too often it beats me. But that day, I knew that dementia had got it wrong. Instead of frightening me, it had blessed me with a visit from someone long gone and much missed. I knew Dad was content by the clothes he was wearing, and so was I, on that sunny afternoon, my cup of tea cooling in my hand. I looked down at it, and when I looked up again, he was gone.’

[Eleanor]

Diagnosed in her late fifties with young-onset dementia, Mitchell—a former NHS nurse and administrator—became determined to stand up for better treatment for other people with the disease. She’s written one previous memoir and is often to be found speaking at conferences, as well as posting online about her life with dementia. This book is less a second volume of memoir and more a practical, action-based guide for those who love people with dementia, giving suggestions as to why particular behaviours or confusions might arise, and ideas for how to adapt, listen, offer alternatives, and continue to show respect and love. I read it because my grandmother, now (I think) eighty-eight, has dementia and lives in a care home. Her condition is quite different to Mitchell’s, partly because the course of her illness is more advanced but also because she’s significantly older and was much less mobile even before she moved into care. Some of Mitchell’s ideas and coping strategies, therefore—supporting your loved one in continuing to get out into the world, allowing them to go to the shops themselves and so on—simply aren’t practical for my grandmother’s level of need. Sometimes that made me sad and frustrated, but I don’t think the book is written with the intention that everything in it will be applicable to everyone, so it’s hardly Mitchell’s fault. Perhaps less defensibly, nowhere in the book is Covid-19 mentioned, though it was published in 2022. The lockdowns and quarantines were reported as causing real and significant distress to people with dementia and I’m sure the social isolation contributed to the rapid progression of my grandmother’s illness.

What struck me most were passages dealing with food and scent. Mealtimes are a common source of struggle for people with dementia. Mitchell suggests hacks like using brightly coloured tableware (dementia affects visual processing, so white plates can be hard to differentiate from the food, especially if the food is pale, like fish or potatoes), bowls instead of plates (coordination trouble can mean that food gets knocked off the edge of a plate, after which it’s instantly forgotten about), and bite-sized pieces of food placed in ramekins (big plates and big portions can be intimidating, especially as many people with dementia—something like sixty percent—develop trouble swallowing). Scent, meanwhile, has been proved to be more efficacious than mere conversation in stimulating memory retrieval. Also, it’s a pretty quick and easy way to keep luxury in someone’s life. When we visited my grandmother, there were about five bouquets of flowers, but all were across the room from her; I lifted one or two and brought them closer so she could smell the lilies and white roses, and it seemed to cheer her. I found this a really useful and informative book, and Mitchell is clearly so passionate about improving quality of life and tackling stigma; well worth your time if this situation applies to you. (And even if it doesn’t, since dementia is nowhere near as well understood, and its research nowhere near as well-funded, as, e.g., cancer.) Source: local public library system #loveyourlibrary

[Jéssica | Chuvadeletras__ · Rating 5 out of 5]

O Que Eu Quero Que Todos Saibam Sobre Demência é um livro autobiográfico de Wendy Mitchell.
Queria muito ler este livro pela temática principal que aborda, mas não esperava gostar e aprender tanto com ele. Na verdade, foi só quando iniciei a leitura que me apercebi do quanto precisava de o fazer. Não sou muito de fazer anotações nos livros, mas perdi a conta às que fiz neste. É verdadeiramente bom!

Este é, no fundo, um relato que tem como objetivo desmistificar os estereótipos e mitos sobre a demência, e, a meu ver, Wendy faz isso de forma brilhante. Sem romantizar a problemática, a autora transmite de forma clara e precisa muita informação sobre a demência, sempre numa ótica de experiência pessoal.

Não sei se se deve ao meu interesse pela temática, mas sinto que ler esta obra é um verdadeiro privilégio. Através da sua própria experiência, Wendy ajuda-nos a compreender o dia a dia de alguém que vive com esta doença, abordando alguns desafios com que se depara e apresentando soluções práticas para os mesmos.

Este livro não é um manual de diagnóstico, é uma fonte útil de informação baseada na experiência pessoal e na evidência científica. Se se interessam por esta temática, não deixem de ler este livro. Prometo que não se vão arrepender, que vão aprender imenso e abrir horizontes. Não podia recomendar mais esta leitura.

Para concluir, deixo um excerto das imensas passagens que me marcaram neste livro:
“(…) Não deveríamos, todos nós, viver mais no momento presente? (…) Mais do que tudo, a demência ensinou-me que todos precisamos de voltar ao momento presente.”



Agradeço imenso à Editorial Presença pela cedência de um exemplar para leitura e partilha da minha opinião honesta.

[Donny · Rating 5 out of 5]

This is a book that probably everyone should read. My Mum had Alzheimer's and this book still taught me a lot about the way people with this disease are affected. With dementia due to affect one in two of us, we all need to understand this disease from the point of view of those living with it. Wendy is such a courageous lady. How devasting to be told at 58 that you have early onset dementia. Luckily for her and us the part of her brain that allows her to type her blog and write books has not been affected. People have queried her diagnosis because of this, but she is affected by the disease in so many other ways. She is simply determined to live her life, her way. She is Wendy, a lady who refuses to be defined and labelled by the disease she lives with. If you think you know about dementia or don't know anything at all, please read this book and Wendy's previous book too. The last chapter in particular left me with a big smile on my face. What an inspiration she is 😍.

[Mary Crawford · Rating 4 out of 5]

The author is living with dementia and shared useful insights of how she and others maintain their relationships, health and well-being. She explains how sensory aspects can impact on how the world is perceived and offers suggestions as to how any of us could be more aware in our dealings with relatives who are also living with dementia.

[Rebecca · Rating 5 out of 5]

A must-read book for anyone wanting to understand more about dementia.
Wendy's own dementia hasn't stopped her writing her second book and it is a huge insight into some of the many ways dementia affects daily life and relationships.

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.

Thank you Wendy.

[Irni Farid · Rating 5 out of 5]

Reading for information and understanding. It's never easy to be empathy. This requires understanding. Putting yourself into someone else's shoes. I appreciate this book. The author wrote based on experience and own research. Managing a stigma or taboo such as dementia is both challenging for the patient and family as caretaker. It's nice to know there are options for the patient.

[Lucy · Rating 5 out of 5]

Very insightful. As a befriender for a service user that lives with dementia, this book has been on my tbr for a while, and I am very glad I picked it up. Dementia is so much more than losing your memory. I can only hope that there continues to be more support services available to individuals and carers alike.

[Emma Nicholson · Rating 5 out of 5]

A very helpful and positive look at dementia. I learnt an awful lot about how to be with my mum and what life is like for her.

[Bibliophile · Rating 5 out of 5]

Wonderful to finally have an insight of what actually people with Dementia going through is a wonder🥹 To finally get to understand them, i think this book is deserve a huge Thank You from everyone for even exist. I can’t believe i even tear up while reading it especially the ending😭 it just show how raw the story is… at first I thought it will be about facts & studies but nope the author poured her feelings, thought and actual experience of dealing with Dementia itself🥺 i just love the writing style & even the information in it because truly as the author say only the one experience it can actually describe how it felt like…& till this day how oblivious we are on Dementia, the symptom, the struggle they face & even the support they need. I think this book help us all open our eyes & hearts reading its topic. I would like to thank the author herself for writing & sharing her experience because if not with book contains information like this, i think till this day we would not truly get a glimpse of what they actually experience & what we can do to help❤️

“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?”
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“Eating is such a sensory experience, not just in terms of taste and smell, but also touch, sound and sight. A black tablecloth left me confused about whether the table it covered was a giant sinkhole in the middle of the dining room, and once my eyes had adjusted or my brain had caught up and I realised it was indeed a tablecloth, I had no idea where the table started or ended underneath it.”
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“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.”
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“A 2018 Japanese study found that as a cue for recollection in the elderly population, retrieving a memory through olfactory stimulus can be more effective than through conversation alone, and that this could improve mental health more generally. The report said: ‘It is easier for elderly people to recall past memories and emotions during intervention when practising reminiscence using olfactory stimuli compared with when practising reminiscence using conversation. Such intervention results in emotional stability and, consequently, may affect the tendency to decrease depression during intervention in the short term.’ No wonder I love my rose-lined pathway so much.
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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“It’s easy to see why these hallucinations might be distressing to people who experience them without understanding that they can be a normal part of the disease. It’s important, as with all these tricks of the brain, that those supporting people living with dementia understand this too. If we tell you we can smell something, in that moment it smells completely real to us. Knowing these things means a better relationship with the disease for everyone.

‘Some people believe dementia creates hallucinations from nowhere, but it does not do this. Dementia isn’t “making up” the hallucination, it just “releases” stored memories from the past, and unfortunately usually the unpleasant ones.”
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“The best kind of treads are those where the edges are clearly marked, particularly in yellow, as is often the case with outdoor staircases. I decided this is why I so often fall up and down my stairs at home, as they are carpeted with no clear edge. Now I have two stair banisters, one on each side, to hold on to to make it less likely.

Patterned carpets are completely disorientating because all the shapes just seem to come alive, moving around in front of my eyes. It can be very disconcerting to be asked to walk across a carpet that looks as though it’s covered with wriggling creatures, and because many of us with dementia have a wobbly gait, we tend to spend a lot of time looking at the floor to make sure we don’t fall over.”

“Black is generally a very bad colour for some of us. Now if I see someone dressed in black, it looks like their head is floating in thin air.”
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“The logical part of my brain knew that what I was seeing what was not real. I know the disease has a habit of playing tricks on my brain, and normally I would use my thirty-minute rule – walking away and returning half an hour later to know for sure whether what I saw was still there. But this time I simply stopped and stared, determined to enjoy this gift that dementia had granted me, because they are so few and far between. I felt not fear but an emotional pull to stay and spend some time in the company of my dear old dad again.”
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“ I was never a very tactile person. Dementia changed that: suddenly I found myself wanting to hug everyone that I met, or at least the people who I knew by instinct that I liked. I see people as kind or not kind, and for those who show kindness, in return I wanted to hug them to show my gratitude. Their kindness means much more than they can imagine. I suddenly found myself hanging on to my daughters for longer and harder. Was it lost inhibitions that were to blame? A new neediness I hadn’t been brave enough to admit to? Or perhaps a hug represents an inner emotional reserve: maybe touch cuts through moments when words grow complicated or hard to find, instantly communicating that someone cares.”
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“ 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.”
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“There is no follow-up, no coping strategies for me or anybody else. If I had been diagnosed with cancer, or a stroke, or diabetes, would the consultant have discharged me? So why is there no aftercare following diagnosis of a brain disease, and no continuing support?
There was no social support available – ironically, even less so for those with young-onset dementia. But there are so many husbands, wives, sons and daughters who are thrown into the new role of ‘carer’, the weight and expectation of society imposed immediately on them with no preparation, no planning, no warnings handed out alongside this life-changing diagnosis. ”
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“My daughters both know that I don’t want them to be my carers. I asserted that from the day I was diagnosed and I haven’t changed my mind. I want my daughters to come and see me, to have a cup of tea, take me out for the day so that we can enjoy something together. But I don’t want them coming to mine after a hard day’s work and then having to sort my washing, or do my cleaning, or worse still, wash me. I want them to have their lives, and I don’t want that life to be intruded on in any way that labels them as carers. I want to always be their mum, in whatever way that is possible. It’s important to me to still feel useful to them, to care for them, even in a reduced capacity.”
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“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.”

“As Sarah said herself, where would the joy in life be if you were constantly being watched and told not to do something, or had others taking over and doing everything for you? It’s so difficult for people to imagine – especially people who love us, like my daughters do. But by doing that, it gives us our life back. For me there is no greater gift than that.”
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“I don’t have anyone correcting me when I say the wrong word, date, or name. I’m forever hearing partners correcting their loved ones when a name is wrong. In the grand scheme of things, does it really matter? If you eavesdrop on a group of people with dementia, you will rarely hear corrections. Instead you will witness acceptance: people going with the flow. Putting someone right just leads to faltering, to hesitation while you double-check yourself, and then of course the flow of thoughts is lost.”
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“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.
In the animal world, words aren’t necessary: there are purrs and licks, and a nose from a new mum is often enough to keep her new brood in line. Why do humans, then, place so much stock in words, when most of the time there are never enough of them to say what we really feel inside?”
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“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. ”
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“I can change the world” stuff into a bin somewhere. That’s the past now; that ain’t going to happen. It’s difficult to accept that, but I think it’s an important part of why our feelings settle a bit when we have dementia. We no longer have that pressure of a future on us. I care less about what I should care about; if it’s not in my heart or head, it’s not happening. So I’m not going to put myself out to pretend it is.’
‘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.”
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“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.”
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“But how many of us can say we stay the same throughout our lives? The only difference with dementia is that these scars are more physical, more permanent, on the whole unmendable – yet not insurmountable.
But that all depends on how you look at things.
Attitude is half the battle when it comes to a disease like dementia. The way that we address these fogs, these short-circuits – call them what you like – can minimise or maximise what’s happening to us.”
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“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.
‘Legs up,’ he says again.
But I am exhausted, from the thrill of it more than anything. I feel the smile still plastered to my face, as if the wind has left it there, but there is no energy left in me. Then I hear people shouting from the ground.
‘Legs up, Wendy!’
Mr Pink Man must realise this and he lands us both like ducks on water, and I collapse in a heap at his feet.
‘Did we miss the landing spot because of me?’ I ask.
‘No,’ he says. ‘We had to show everyone you could do it.’
He hugs me and undoes all the clips and fasteners. Two other men come and help me stagger back to the hangar to the sound of claps and cheers, and there I take off my jumpsuit.”


“Had he been one of the doubters as I took to the air? Who knows? In that moment I hardly care.
If I listened to what everyone else says, I would never have jumped out of an aeroplane. I would never have done half the things that others say are not possible for people living with dementia.”

Excerpt From
What I Wish People Knew about Dementia
Mitchell, Wendy;
https://itunes.apple.com/WebObjects/M...
This material may be protected by copyright.

[Lynne · Rating 4 out of 5]

It's inspiring to read more about how positively Wendy Mitchell approaches living well with dementia, informative to hear directly from people with dementia and this book shows how much there is for those of us who don't have dementia to learn so that we change our damaging attitudes - not that Wendy expresses this last point as angrily as me!

[Alexandra Carey · Rating 5 out of 5]

Vital reading

I believe this is a book that everyone over 50 should read. It explains why so many of the stereotypical views of dementia are misconceived. But most importantly it shows why a greater understanding of dementia is needed throughout society.

[Heather · Rating 5 out of 5]

written literally from the heart, the author has dementia and has written a wonderful insight into her brain. How it works, what to do to alert it to reminders and how to survive on a daily basis. Its a book of hope not gloom and doom, I have learnt so much from this book and has made me fully understand what happens to someone with even mild dementia and steps i can take without the other person noticing, to be open and kind. Everyone should read this book. Thank you #NetGalley for the copy to review.

[Bloody Byssche · Rating 4 out of 5]

"We each have our own individual tactic for facing life with this disease, but when those around us disable us, it changes the way we go about our lives."