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BOOK REVIEW 2024 : What Dementia Teaches Us about Love by Nicci Gerrrard

Dementia

Nicci Gerrard is a journalist, writer and novelist, who is probably most well known for her best-selling psychological thrillers. These now number 25 and are written in partnership with her husband, Sean French, under the name Nicci French, and include Blue Monday, The Safe House and What To Do When Someone Dies.  

She wrote this book about dementia care following the death of her father, whom she describes as her guide, “vigorous at first and then frail, sometimes disappearing from view, but always my ghost.” One of her motives in writing the book, she confesses somewhat surprisingly, was to ask her father for forgiveness, although it comes across that she was devoted to him and did her best to ensure that, as his illness progressed, he received the best possible dementia care. As befits a good investigative journalist she undertook a vast amount of research before starting the book, including visiting many hospitals and care homes and interviewing dozens of people, both in the UK and abroad.

In 14 beautifully written chapters Nicci takes us on an absorbing journey from the early signs of dementia, right through to death and its effect on those left behind. As well as possessing the gifted writer’s flair for language, Nicci also reveals great insight into the complexities of human life and writes with both humanity and wisdom. Despite dementia care being a sober subject, the book is a fascinating read, full of reflections about the nature of human existence, for example: “Life has meaning precisely because it a process. It begins and it ends – for everything that has a beginning has to have an ending. We can only have a sense of self if we know the self will age and the self will die,”

What makes the book so special, though, is its deep sense of humanity, highlighted by the  many real-life stories of people touched by dementia. As Nicci herself says: “It contains the stories of nurses, doctors, scientists, therapists, philosophers, artists – but above all, of people who are living with this disease and those who are accompanying them, bearing the unbearable, becoming the gatekeeper, the memory, and the voice.”

The book is also full of interesting facts: Nicci notes, for example, that 40% of people over age 75 say that television is their main companion, that 1 in 8 people over 80 in the UK is living with dementia and that only 8% of dementia patients die at home.

Apart from some rare exceptions, Nicci is highly critical of the state of dementia care in the UK. With so many dementia sufferers requiring in-patient care at some point, hospitals come under intense scrutiny and Nicci has some harsh things to say about them. She describes in stark terms the misery of the ward where her daughter stayed following a riding accident: “The air felt thick with distress, helplessness and fear.”  She also believes strongly that hospitals make a very poor job of providing dementia care, commenting: Hospital everywhere is hazardous for people who are old, frail and confused.” A clinical psychologist tells her of a conversation he once had on a ward with an old woman who kept standing up and screaming and when asked why she was so angry, replied: “I’m frightened, fucked up and far from home.

Nicci seizes on this cry for help and writes: “I think of all the men and women I’ve seen lying in their hospital beds, crying out, moaning, obviously frightened but without the words to say of what. Wanting, but not able to say what they want, need, hope for, must have. “Maybe we have to listen harder and learn it better.”

One of the most serious consequences of dementia, she notes, is that people gradually lose their memory and “Life without memory is no life at all.” As dementia sufferers lose their ability to communicate through speech, it is important they continue to have a voice and are heard.  Nicci strongly believes in the positive impact the arts can have on the health and wellbeing of everyone and especially those with dementia and quotes Alex Coulter of South West Arts South West | Arts Council England who confirms: “the power of the arts to take us both into our self and into the world.” Or, as Nicci herself puts it: Music, words, pictures have the power to take you to a different place, like a kind of magic carpet.”

So what does dementia teach us about love? For whatever reason, the writer avoids spelling out a definitive answer, although the suggestion is that caring for someone with dementia is in itself a supreme act of love, requiring infinite patience and selflessness bordering on saintliness. Nicci tells us that when her children left home, she trained as a humanist celebrant, conducting funeral services for those who have no faith.  

Her considerable experience in helping people come to terms with the death of a loved one leads her to reach an optimistic conclusion “Death can restore a person, especially when that person had been un-made by dementia. Once they die, they are no longer only old and frail and ill, they are no longer only confused and forgetful, no longer a wrecked body and a failing mind, no longer not themselves. Because they have gone from us, they can come back to us and be all the selves they have ever been. Young, old, everything in between. Robust, Vulnerable, Everything in between...” As the famous broadcaster, Andrew Marr, wrote in his review when her book first came out:  “Nobody has written on dementia as well as Nicci Gerrard.”

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