Wendy Mitchell has written her second book on living with dementia, ‘What I Wish People Knew About Dementia’. The book is written by Mitchell (and Anna Wharton) using a combination of her personal experiences, new research outcomes and comments of friends and family to challenge misconceptions about dementia. Mitchell’s diagnosis of early-onset dementia shook her world, but we see her optimistic and witty memoir, which presents another side to living with dementia that is rarely expressed.
Before I started this book, I reflected on my knowledge of dementia. Having a personal relationship with dementia (through my late grandad, Geoff) but also, being a PhD student studying ‘Neurodiversity & Identity’, I was ashamed to say – I didn’t know much! Mitchell writes, ‘When people think of dementia, they instantly think of memory – few realise how it changes relationships with our senses, emotions, and communications’. I confess, before I started this book, I was one of these people. I had no idea how similar Mitchell’s experiences of dementia mirrored many of my neurodivergent experiences – mainly when it came to sensory processing. To me, this highlighted how little accessible and ‘accurate’ information there is on dementia, so I will be eternally grateful to Mitchell for this book. Another dementia advocate, Peter Mittler, stated, “Everybody thinks we are just a medical problem”. Mittler advocates for dementia to be viewed through the lens of neurodiversity, as a form of neurodiversity. With ‘What I wish people knew about dementia’, I can see why. Mitchell writes, “People only know snippets through media, newspapers, television and second-hand tales from a friend”. I can say from adopting a neurodiversity paradigm and exploring the proliferation of stereotypes of autism and ADHD in the media for my PhD research how this leads to misconceptions of people’s ways of being, usually negatively. I read this book eagerly, challenging everything I thought I knew of dementia, in awe of the knowledge passed on in such an accessible, enjoyable, and personal way. At times, I felt I was sitting in Mitchell’s sunroom (as she describes) engaging in conversation, not reading this book alone in my living room. I felt connected to her and her story, which will stay with me forever. ‘What I wish I knew about dementia’ has changed my entire view of dementia.
The book is divided into six sections – Senses, Relationships, Communication, Environment, Emotion and Attitude – with each area subdivided into groups of self-reflections by Mitchell, framed by modern scientific research and her own (and others) life experiences. For me, one of the most notable areas of this book is where Mitchell discusses food and eating. She mentions a time that “made me feel foolish that I could no longer eat without shame”. Mitchell expands by describing people’s unsolicited comments on her eating habits based on her sensory changes towards meals and her ‘restricted’ and repetitive diet. Mitchell spends this section of the book describing in detail how dementia had changed how she processed the look, smell, feel and taste of food citing experiences to help the reader understand. Fantastic! She highlights how often the most uncomplicated adjustments are enough to allow that person to live with agency, independence and free from ‘shame’.
Pg. 82 stood out as Mitchell introduces one of her friends who has dementia but had also “lost the ability to speak”. She describes:
“She can still write, so eloquently and with so much emotion, yet she cannot say the words she longs for people to hear. Does that mean she should be excluded from joining in? Should her silence make others feel uncomfortable when it’s clear that inside there is still so much that she wants to say? […] Does it matter that she cannot speak when this is not the only way we go on our way through this world?”
Concerning neurodivergence, speech communication is a theme that arises (unfortunately) frequently, should a person use another method than speech to communicate. I felt her frustrations as I had done many times before…
Mitchell offers guidance in a practical sense, e.g., buying shoes without laces or a cordless vacuum cleaner but also in a human way, in which she urges all to be patient and kind. This book is superb, and I will be urging all my friends, family, and colleagues to pick up a copy. Thank you, Wendy!
Ashlea CROMBY is an early-career researcher from East London/Essex. Her research interests lie in digital culture, identity & neurodivergence and more, recently, apply identity theory to the recruitment sector for neurodiverse people. Ashlea works at both Oxford and Cambridge as a specialist autism mentor. In her spare time, Ashlea enjoys caring for her vast houseplant collection and spending time with her two Persian cats.