One bright afternoon not long ago, Wendy Mitchell saw her father in her garden. She was inside with a mug of tea and he was standing on the lawn in his baggy green cardigan, smiling at her. She saw the yellow of his nicotine-stained fingers and the shine of his black, Brylcreemed hair. They stared at each other, happy to be together again. Then, in the blink of an eye, he was gone and the sunlit lawn was empty.
Her father had been dead for more than 20 years and the sighting of him through the glass door was simply one of the many visual hallucinations that ambush Mitchell: the escalator turns into a waterfall; a marble floor is a swimming pool; a patterned carpet writhes with creatures; a person dressed in black becomes a disembodied head floating on air. Seeing her dead father could have been scary, confusing or painfully distressing, but instead Mitchell accepted the trick that dementia was playing on her as a gift, a moment of grace.
What I Wish People Knew About Dementia is chock-full of such optimistic reversals, in which something that most of us would experience as upsetting or frustrating is turned towards the light: a problem has a solution, a loss can bring unexpected gains, the diagnosis of dementia does not need to be a death sentence, but can instead herald the start of a whole new adventure in being human. Like her bestselling account of living with dementia, Somebody I Used to Know, this is a book whose purpose is to convert despair into hope.
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).
Her book, which she wrote with the help of Anna Wharton and which includes the comments of friends who also live with dementia, is a compilation of these strategies: a kind of how-to manual for people with the condition and those who support them. It proceeds by a practical and calming formula: take a difficulty and find a way to overcome it. The book is divided into six sections – Senses, Relationships, Communication, Environment, Emotion and Attitude – with each section subdivided into easily assimilable packages of guidance. Writing things down, not worrying about getting lost (a “walker” becomes a “wanderer”), buying shoes without laces or a cordless vacuum cleaner, turning a space into a memory room, finding other people with dementia to talk to, refusing to let her two adored daughters become her carers, understanding that “behavioural problems” are actually expressions of the desire to be understood and “challenging behaviour” a symptom of unmet needs, taking joy in the moment, meditating, finding the right apps, acknowledging confusion, recognising that dementia is a neurological condition… Running under all the commonsense pieces of advice is a deeper and more existential message, one for all of us, young and old, in health or frailty: be kind, be attentive, be resilient, bend with change rather than be broken by it, connect, forgive, accept, embrace. Live.
Like Somebody I Used to Know, this is a book of hope. But there is a sense of intense labour, struggle and pain behind Mitchell’s pieces of advice and consolation. I can’t begin to imagine the how hard she has to work to be the Wendy Mitchell she has forged out of her illness – the one who has become a beacon of hope for thousands of people who live with dementia, who seeks joy in small things, takes adventures where she finds them, is open to her own vulnerability and humorous in the face of implacable decline (laughter is her best medicine). Yet she says that, in spite of the “haze” in her brain, in spite of the effort and weariness, in spite of times of confusion and distress, in spite of knowing she is edging towards the darkness, in spite of all she has lost and continues to lose, she is in many ways happier now than she has ever been, liberated from the shyer, more self-conscious and timid self of that somebody she used to know.
I interviewed Mitchell when her first book came out and have met her several times since (she can never remember me, as she delightedly tells me each time): a small woman, grey-haired and smiling, who wears bright clothes and walks with a lopsided gait. She reminds me of a frail boat in a storm, battered and tossed about but still afloat and forging into the unknown, ripped sails unfurled. In the final pages of What I Wish People Knew About Dementia, when she recounts her experience of skydiving for charity, she draws on this sense of openness and joy. Strapped to a giant of a man dressed in pink, she plummets towards the ground smiling wider than she had ever smiled before: “Up here, there is no dementia… I am flying, free from all that binds me to the earth.” And why, she wonders when she is once more on solid ground, should the adventures ever end? She is a gallant soul.
• What I Wish People Knew About Dementia, From Someone Who Knows by Wendy Mitchell (with Anna Wharton) is published by Bloomsbury (£14.99). To support the Guardian and the Observer order your copy at guardianbookshop.com. Delivery charges may apply
