What Dementia Teaches Us About Love

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Member Reviews

However upsetting this subject matter may be, this is an important book to take on board.  I read this because my lovely Grandma had senile dementia in the 60s. Then, it was a shameful and not spoken about ‘problem’.  I’m so pleased that we are now talking about this terrible disease and was particularly enlightened by Nicki Gerrard’s investigation into something that will inevitably affect us all.  A very brave and concise account.  My only slight irritation is that I wish she hadn’t shied away from the reality, dirty, mundane, cruel and downright awful moments that are a daily occurrence for dementia sufferers and their careers.
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I found this book most informative and it resonated with me on many levels as I have seen a loved ones slide into Dementia.
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CRITICAL ~ Dr Matt Morgan

NB - I reviewe both these titles in a single review for the Chesil Magazine, Dorset, as they turned up within a day or so of each other, and they seemed to offer much the same message.  In fact, I would recommend anyone who reads either of them to read the other one as well.

Nigel Melville

If there are fates most of us dread, one must be to wake up in an intensive care unit and another must be to wake up to the realisation that dementia has caught you in its terminal grip.   Not a happy thought, either of them, yet both these books are full of compassion, hope and a positive view of life and death.

Matt Morgan is a consultant in intensive care and sounds just like the sort of doctor you would like to have around in a crisis, completely on top of the 13,000 diagnoses, 6,000 drugs and 4,000 surgical procedures that make up his survival toolkit.   Chapter by chapter, he explains in simple terms what happens when things go seriously wrong with the important bits of your body.   He starts where modern intensive care started, with the 1952 Copenhagen polio outbreak (remember polio ?) - with no iron lung available, 1500 volunteer students operated a hand pump non-stop for six months to help a teenage patient breathe.   Yet he quotes Voltaire's quip that “the art of medicine consists in amusing the patient while nature cures the disease” and he insists that the boss in any  care unit is not the doctor, the nurses - “the boss is the patient”.

He concludes that “intensive care is not always about epic saves (and) life-saving wizardry.   It is also about compassion, about honesty, about making cups of tea for grieving relatives ...” which neatly introduces the second title.   Nicci Gerrard (whom you might know better as novelist Nicci French) writes a moving tribute to her late father which forms the setting for a guide to “the dementia abyss into which meaning is sucked”  She can be every bit as clinical as Matt Morgan (“someone develops dementia every three seconds”) but she is just as life-affirming, describing the way in which music, poetry and art can bring some relief from the darkness, or how deep sleep can consolidate fragile new memory traces into “more permanent forms of long-term storage.”   And it could be Matt Morgan writing that “there is a great chasm between care and 'care' “   She is fiercely defensive of carers' rights to hospital visiting, and of the need “to focus on what the person with dementia can do, not what they can't.”   Time after time, I was brought up short by a telling phrase ~ “confabulation”, people with dementia finding alibis for themselves, finding  strategies to cover up memory lapses, confusion and mistakes, or a thoughtful insight ~ “it is easy to know what it is to be young, for everyone has been and still is, somewhere inside, and it is hard for the young (and even for the old, for we see the old at a distance, through the wrong end of a telescope.”   Appealing for greater awareness of the “particularly long farewell to the self”, she remarks “When I was a teenager I noticed other teenagers.   Pregnant, I suddenly saw all the pregnant women … Now I see countless people who are frail and scared – but that's only because I saw my father so frail and scared.”

 I can't hope that I will ever be much good at coping with dementia, but at least I have no excuse not to understand a little more about it.
											Nigel Melville
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Well worth the read, it confirmed what we have experienced recently, what we are experiencing at the moment and what will happen in the future, it made me think “you are not alone” would recommend this for people to dip into/read to help them with this.
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This was an interesting and heartbreaking read. It took me a while to read it. I am really glad I did. I do not feel that I learned a lot but I felt the book was still worth reading.

Thank you to Netgalley for my copy.
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Dementia is heart breaking and a horrible disease but this book pulls something out of the darkness. #NetGalley#WhatDementiaTeachesUsAboutLove
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I found this book absolutely stunning – written from the heart, drawing on the author’s personal journey through the decline and loss of her father together with an immense amount of research, quite beautifully presented and written with the most vivid imagery, following the unremitting progress of the disease. It begins with getting old and facing up to its presence, follows the stages of deterioration (the shame of the early stages, the return to a state of innocence, together with those rare moments of joy and beauty), looks at the challenges and changing role of the carer, and then – inevitably – deals movingly with the end, saying goodbye, and death.

“In 2015, an estimated 850,000 people in the UK were living with a form of dementia: the same number was thought to be undiagnosed. As the population ages, it is estimated this figure will increase to over 1 million by 2021 and 2 million by 2051… According to the World Health Organisation, there are around 47 million people living with dementia in the world. Someone develops dementia every three seconds.”

I read much of this book at a hospital bedside, as my mother – entering the later stages of vascular dementia – fought the advance of sepsis from an unknown source, and it looked possible that she wouldn’t pull through (I’m pleased to report that she has – and her journey continues). I found it immensely uplifting, the writing quite exceptional, and the love in which each page was wrapped made my solitary hours considerably more bearable. Nicci Gerrard really understands – I marked so many passages as I read, the most perfect prose faultlessly capturing the emotion in those scattered important moments, wanting to be able to return to them later.

“He wasn’t like a landscape, ruined and the wind ripping through it; a city, bombed; a house, demolished; a deck of cards, shuffled; a glass, dropped; a manuscript torn into shreds… He was like a man, an infinitely helpless and bewildered man, at the mercy of the world.”

This book draws together facts and figures, the most moving human stories, the author’s personal experiences through her father’s decline together with searing insights into the impacts of dementia and those who love them. It draws in the importance of art and music, the creative arts – fascinating and immensely moving accounts of the way responses can be evoked when words and understanding begin to fail. Understandably perhaps, I responded at a particularly personal level to the chapter on carers, which looks at the way previous relationships are impacted, using both statistics and personal stories that broke my heart: but the book also shines an unforgiving spotlight on the many failures in support, the “great chasm between care and ‘care'”, the overwhelming need to shift focus from “them” to “us” and question our collective humanity.

“Even when memory is gone, language is splintered and lost, recognition has crumbled, and the notion of a self is hard to hold on to, there are ways to find the human being trapped in the wreckage, to hear them and to acknowledge that they are still humans, precious, and one of us.”

Glancing at the early Amazon reviews of this book, I’m appalled by a solitary one-star – the comment being “completely unrealistic… dementia is so different in real life”. I know nothing about the reviewer’s own experience, but I really couldn’t disagree more vehemently. This book is absolutely true to my own experience, so very important, presenting so many new insights and perspectives with exceptional understanding: I’d recommend it without reservation to anyone who might be looking for an unflinching look at the human impact of dementia, moving, uplifting, and beautifully captured.
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A very sensitive view of a very cruel disease and the way it affects so many people.  It is sometimes hard to read, and must have been very difficult to write, but the love does indeed shine through.
Thank you to the publisher and Netgalley for the ARC
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This is a really hard book to review, due to the subject matter and that most people who are reading it, will have their own personal reasons for doing so.

Saying that, it was beautifully and honestly written and provides another point of view to this cruel disease.
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It is heartbreaking to watch someone special to you deteriorate in front of you on a daily basis. An intelligent man become almost childlike in his behaviour and the simplest of actions now requiring the help of a carer. My father was diagnosed with dementia 2 years ago and I am learning daily the depth of this terrible illness. Successful author Nicci Gerrard, who co writes thrillers with her partner Sean French gives a great insight into Dementia for anyone who has not yet witnessed the illness first hand or for people like myself who deal with it daily on a personal level. There were many things she talks of that are very familiar to me already and others that may help me in the future caring for my father. This must have been a very difficult book to write, there is no happy ending and it is certainly not an uplifting book but for many people like me I am sure it will be not only helpful but also reassure carers.
I would like to thank Net Galley and Penguin books UK for supplying a copy of this book in exchange for an honest review.
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The author's own experience of dementia, came full circle in 2014 when her father died.  The journey that he and his family were on, the difficulties and frustrations that are encountered by everyone to a certain extent.

This frightening illness robs people of their personalities, worth and importantly, the ability to recognise those they love.

The people who care for dementia patients are endlessly patient and supportive.  It is obvious that the author has done her research into all aspects.

This is well worth reading and is an eye-opener.

I chose to read this book and all opinions in this review are all my own and completely unbiased.  My thanks to NetGalley for this opportunity.
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I saw this at Waterstones and luckily got a copy from netgalley, so thanks. 

It's every bit as beautiful and well written as I'd imagine it to be. Nicci exposes her soul and really digs deep to personhood and what it means to have dementia. I don't know anyone who has dementia, but it reads like good fiction and is philosophical. She writes so well, it's a book I took my time on. It's not a page turner, although I expect it shouldn't be.

Despite everything, as a 36 year old, I've told my husband my plan and like the idea of ending my life on my terms if dementia were to be my fate, as it sounded like people hold on to those who have dementia, because of them, not the person with dementia.

I've read nothing quite like it and if you want to contiplate your life and feelings about death, this is the book to do it. Although there are a handful of reappearing characters, I sort of remembered who was who and if I forgot, it didn't matter. What hooked me is the idyll picture of Sweden and her father that she painted in the begining. 

She (they? Nicci talks about her partner being her writing partner) has done a tremendous job on eloquently weaving a picture of both dementia, feelings towards it and those around it. Worth a read.
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Hard subject matter to read about especially if you know someone with dementia. Unfortunately for me both my grandad (no passed) and my nan (still with us) have had different forms of dementia. I didn't garner any more information than I already had from my own research but it would benefit someone only just starting out on the journey of learning the ins and outs of dementia.
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I chose this book because my mother suffers from dementia.  It is very readable but did not really provide me with the insights I was hoping for.  some of the behaviours resonated and there were moments of hope.  However, at the end of the day there is currently no cure for dementia and the fact that the first chapter is about voluntary euthanasia just highlights this.  Quite interesting if you know someone who has only just been diagnosed with dementia.
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I enjoyed this book despite the tough subject matter. I don’t know anyone who hasn’t been touched in some way by dementia and Nicci Gerrard has spent time with a number of people gathering their stories and experiences which are brought together well in this book.

I read this immediately after “Somebody I used to know” and couldn’t help comparing. I think they both give valuable insights from differing perspectives.

I would recommend this book.
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I don't think enjoy is the right word for this book due to the topic it's hard hitting and really pulls at your heart strings. Throughout the book it gives you real informant information. It's one of those books that everyone should read to educate themselves and see what dementia is really like to live with. It's written with love amazing book.
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As a person potentially approaching developing this condition I found this book really insightful.  There were comments throughout that immediately made me think 'oh!  I did find the references to other works a bit tiresome though.
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Nicci Gerrard writes beautifully in an interwoven story of her own father’s dementia and how both families and the state can care for those who succumb to this horrible disease - a disease which will only increase in numbers in the years to come. An important and challenging book, but written in a lovely and literary way. The love she has for her father shines through.
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This is an astoundingly personal account of dementia as it affects the authors family..Nicci Gerrard is an accomplished writer and she gives her own take on the journey her family took when dealing with her father’s descend into the strange world which we have labelled as dementia.Not only that she has sought out other peole’s experiences and included them in her narrative but given a very eloquent but tortured account of her personal experiences.This means that there is a wide range of experiences and personal battles included in the book..I can definitely a recommend this book to be read by everyone in the population. It does not matter whether they have encountered dementia intimately and directly in their life or it has been on the periphery of their life.The statistics included in the book are quite frightening when we consider that we will all have contact (sometimes intimately) with a person close to us suffering from this diagnosis.Therehas been a huge of research gone into this book and it could lead to a fuller understanding of dementia as well as giving pointers as to where to get further advice and information and help.
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To witness the gradual decline of someone you love is not easy. Therefore all credit must go to the author for sharing the experience of her father’s Dementia journey, together with others that face similarly challenging circumstances. 

I found a vast proportion of the narration resonated with me, which I am sure will be a view shared by many, many readers. 

Its pages are filled with empathy and honesty and highlights that a person with Dementia, in any one of its stealth-like forms, does not cease to be a person – they may forget, but we will remember them. 

The passages that show how the smallest chink of light can brighten the darkest of days are an inspiration. As a result I feel a wide range of people may find some comfort in reading this book.
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