Wendy Mitchell was diagnosed with young-onset dementia in 2014 at the age of 58. In 2018 she published an honest and moving memoir which explored how the condition has changed her life in both negative and positive ways. Somebody I Used to Know became an international bestseller.
It’s reasonably rare for someone living with dementia to write their own experience, and Mitchell is now a powerful and much-loved voice within the dementia community. Her work has helped raise awareness of the illness, advocate for improved services and support, and – perhaps most importantly – ensured that people living with dementia are not just talked about, but included, consulted and listened to when it comes to considering how society approaches an illness that touches so many of us.
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.
In light of these statistics, Mitchell’s latest book is an incredibly important read. What I Wish People Knew About Dementia, blends observations and anecdotes from Mitchell’s own lived experience with statistics, scientific insight and practical information about dementia. For anyone living with a dementia diagnosis, and carers, loved ones and healthcare practitioners, it is essential.
This book raises big questions about dignity and community, autonomy, access and how we value people's contribution to society
Even if dementia has not yet impacted your life, there’s still a lot to be learned. The book raises big questions about dignity and community, autonomy, access and how we value people’s contribution to society. Mitchell’s writing, while particularly pertinent to the conversation around dementia, resonates on a universal level.
On the page, and when I’ve been fortunate enough to hear her speak, I’m always moved by the way Mitchell insists upon practising a deep respect for her fellow human beings. She is herself an embodied answer to the question which her new book raises: can people living with dementia still contribute to society in a meaningful way?
What I Wish People Knew About Dementia is also an engaging and hopeful read. Mitchell’s signature warmth and optimism shine through on almost every page. Even when she’s discussing the more difficult aspects of her life – and she does so with brutal honesty – she’s still quick to laugh, to offer hope and to point towards her support networks as an unexpected positive of the journey she’s been on these past few years. She introduces us to her two grown-up daughters along with some of her friends who are living with dementia and the loved ones who care for them. The anecdotes and advice these people share resonate beautifully with the more informative sections of the book.
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 allowing her friends to speak about their own experiences, she offers the reader practical guidance on how people with dementia actually want to be viewed and treated, alongside an important reminder that it’s better to ask a person what they’re living through than arrogantly assume you already know.
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”.
It's impossible not to be inspired, and also challenged, by this latest account of her life and what dementia has taught her
She explores in detail the six key ways in which dementia has impacted her life: senses, relationships, emotions, environment, communication and attitude. She provides practical examples of what living with dementia looks like on a daily basis – from getting lost while out for a walk, to forgetting how to boil an egg – and is also generous enough to share some of the ingenious coping mechanisms she’s learned to employ.
Wendy Mitchell is a hero to me and many others. Her books have profoundly changed perceptions of what it’s like to live with dementia. Since diagnosis she’s written two books, travelled widely, spoken at numerous festivals and conferences, and even completed a charity skydive. It’s impossible not to be inspired and challenged by this latest account of her life and what dementia has taught her.
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.
Jan Carson’s latest novel is The Raptures