“Life without memory is no life at all,” wrote Luis Buñuel on the plight of his mother, who by the end of her life had no memory left. Woven together over time, memories shape who we are, forming the unique narrative that is our identity.
According to the novelist and journalist Nicci Gerrard, dementia – which “feeds upon the stuff of the past” – is the illness we now fear the most: “The terror of losing memories is the terror of losing the active self.” There are many forms of dementia but more than half of people affected have the neuro-degenerative disease Alzheimer’s. In 2015 some 850,000 people in the UK had dementia and a similar number were undiagnosed. It affects one in six people over 80: “If it’s not you or me, it’s someone we love.” Globally there are 47 million people living with dementia and the cost of treating it is more than the cost of cancer, stroke and heart disease combined.
For 10 years, Gerrard’s father struggled with it and she watched the person she loved “gradually disappearing, memories falling away, words going, recognition fading, in the great unravelling”. He died in 2014 after a period in hospital when he declined rapidly after being separated from his family. Gerrard was so angered by the inadequacy of the treatment he received that she co-founded John’s Campaign to fight for more compassionate hospital care: “A sense of the preciousness of every life should be designed into a system, a society.”
Her powerful and beautifully written book takes the reader on a poignant voyage through the stages of the illness, from diagnosis (one person tells her: “I felt cold water running down my spine”) through the terrible later stages that seem “like a ferocious de-creation of the self and an apocalypse of meaning”, to the final days: “Death can be a friend. Enough is enough.”
On this journey Gerrard investigates the nature of memories and what it means to lose them: “Dementia makes us ask what is it to be a self, to be human.” She meets the artist, Jenni Dutton, whose series of tapestries, “Dementia Darnings”, explores her mother’s illness. “We mustn’t shy away from decline and decay”, says Dutton. She also talks to Patricia Utermohlen, whose husband William painted a series of self-portraits that charted the gradual, pitiless stripping away of selfhood, until all that remained was “a scribbled death-head”. Indeed, one of the inspiring aspects of her book is “the healing and transformative power of art”: painting, poetry, music or dance can offer dementia sufferers solace and reassurance amidst the existential loneliness of the condition.
Gerrard encounters a couple in Holland, where assisted dying is legal, who have written living wills, appointing their partners to decide when they should “die in dignity” should they develop dementia. “My life is the life of a thinking person,” one of them tells her. “That is me. If that ends, my body should also end.” Impressed by their calm rationality, she admits that “we should be better able to choose when to take our leave”.
Yet she also meets many other people and their carers who live with the illness, people such as Theresa Clarke whose “courage and determination” in the face of despair astonishes Gerrard. As the rich experiences of her varied life fade from memory, Clarke lives in the moment: “I’m still resonating, in the present. Now.”
Gerrard raises important questions about how we look after those who have dementia. One in eight adults in the UK is a carer and the toll it takes on their lives is largely unrecognised. A friend who cares for her husband with dementia tells her: “It’s a killer. It’s savage.” Afraid to confront the reality of a disease that dismantles our sense of selfhood, “we turn away … society turns away”.
• What Dementia Teaches Us About Love is published by Allen Lane (£16.99). To order a copy go to guardianbookshop.com. Free UK p&p on all online orders over £15.
