At the age of 56 Wendy Mitchell was working as a non-clinical team leader in the NHS, known by colleagues as “the guru” for her ability to manage fiendishly complex duty rosters, proud of her quick intellect and reliable memory. Then, through 2012, she began to feel her life become “a little less sharp”. The process was incremental: Mitchell had long been a keen runner but began occasionally to fall; shortly after one of her falls it was found that she had had a stroke. Numerous GP appointments, A&E visits and brain scans led her to an outpatient clinic, where the course of her life was derailed with a single word: “dementia”.
In my work as a GP I rarely have to reveal to someone that they have dementia — the diagnosis is usually given by specialists in hospital clinics. On the few occasions I have, I hope I’ve done it sensitively. Mitchell’s diagnosis was delivered by a stern neurologist, who made her feel as if her future was in ashes. Her book Somebody I Used to Know (written with co-writer Anna Wharton) proved otherwise, and was a bestseller in 2018.
With Wharton’s assistance again Mitchell, now 65, has written a follow-up to that memoir. It’s similarly celebratory, and she takes pride in refuting the naysayers and cynics who dismissed her in the early years, and who still occasionally attack her on social media. “Who knew that six years later I would be writing my second book on the subject; that I would have spent the last few years travelling up and down the country to conferences and book festivals; that I would be giving talks to student nurses and experts in the field.”
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. To read Melanie Reid on spinal cord injury, Havi Carel on lung disease, or Harry Parker on prosthetic limbs is to expand our understanding of what it is like to live with a chronic illness or disability. These memoirs are particularly powerful for those of us in medicine, who need to better understand our patients’ difficulties, but they make valuable reading for anyone.
Mitchell grants the reader a marvellous tour of insights into the effects of her dementia: from distortions in her vision, to difficulties preparing food, to hallucinations of strong odours. She experiences occasional (welcome) visual hallucinations of her father, and carries an iPad or phone with her to take a snap of anything she’s not sure about, because “if it’s in the picture, it’s most likely there in real life”.
Dementia has made her hypersensitive to noise, and an auditory physiologist explains how everyone has a gate between the ears and the brain to prevent sensory overload, but hers is permanently open; for Mitchell “a loud noise feels like a raging bull crashing through my head”. Music and smells are best for reigniting her memories, and the installation of smart speakers around her home has transformed her life.
She’s fiercely independent and makes a persuasive case for the advantages of living alone with dementia, despite the risks. With friends from a group called Minds and Voices she wrote and designed a course for people newly diagnosed, to reassure them and inform them that life goes on. She wanted “to help them understand what it was really like to live with the disease. We wanted to give them some hope.” She emphasises that for people with an incurable condition, “recovery” is still possible in the sense of building towards a life of greater dignity and autonomy.
Mitchell describes one of the few consolations of her condition, in that as her dementia has advanced, she has felt less and less materialistic. Her emotional repertoire has shrunk, she says, to happiness, sadness and contentment. She now takes each day as it comes and enjoys those aspects of life she can — an attitude she summarises as: “Shouldn’t all of us live in the moment more?”
Carers and clinicians often stumble over how much assistance to offer someone with dementia, caught between the wish to honour independence and the wish to protect and support. My view is that the best doctors and nurses are those capable of intuiting within the first few seconds of an encounter the kind of approach each patient needs. Mitchell takes offence at several clinicians who get the balance wrong and assume her incapable of something she manages with ease (unaware that she still lives independently, and even goes skydiving for charity).
However, it’s a difficult balance to get right: a friend of hers felt it was insensitive to be asked, at hospital, whether she’d had breakfast or not — that such questions should be directed to carers. “What a stupid question,” the friend said. “They shouldn’t ask the question because they can’t rely on the answer.”
Wharton’s voice as co-author is absent, and I would have liked to know more about the process of writing this revelatory book. But perhaps her perspective is better silenced and Mitchell’s amplified, given how muted the voices of people with dementia have traditionally been, and how much she has to tell us. “The good news is that every new day offers us a chance to start again, to change the language we use, the tone, the way we approach a progressive disease,” she writes. “It is never too late to make a change. You can start the moment you put down this book.”
Gavin Francis is a GP in Edinburgh. His latest book, Recovery: The Lost Art of Convalescence (Wellcome/Profile), is out this month
What I Wish People Knew About Dementia: From Someone Who Knows by Wendy Mitchell, Bloomsbury, 230pp; £14.99
This article originally appeared on https://www.thetimes.co.uk/article/c2f07bf2-6d5f-11ec-a1b8-3009dadbed4f?shareToken=e30f9ce0afed59292aa46101ac65530a
