What do you think?
Rate this book
What Dementia Teaches Us About Love
A SUNDAY TIMES, NEW STATESMAN AND FINANCIAL TIMES BOOK OF THE YEAR
'Immensely powerful . . . her investigation of this terrible illness is sensitive and compelling' Sunday Times
After her own father's death from dementia, the writer and campaigner Nicci Gerrard set out to explore the illness that now touches millions of us, yet which we still struggle to speak about. What does dementia mean, for those who live with it, and those who care for them?
This truthful, humane book is an attempt to understand. It is filled with stories, both moving and optimistic: from those living with dementia to those planning the end of life, from the scientists unlocking the mysteries of the brain to the therapists using art and music to enrich the lives of sufferers, from the campaigners battling for greater compassion in care to the families trying to make sense of this 'incomprehensible de-creation of the self'.
'Immensely powerful . . . her investigation of this terrible illness is sensitive and compelling' Sunday Times
After her own father's death from dementia, the writer and campaigner Nicci Gerrard set out to explore the illness that now touches millions of us, yet which we still struggle to speak about. What does dementia mean, for those who live with it, and those who care for them?
This truthful, humane book is an attempt to understand. It is filled with stories, both moving and optimistic: from those living with dementia to those planning the end of life, from the scientists unlocking the mysteries of the brain to the therapists using art and music to enrich the lives of sufferers, from the campaigners battling for greater compassion in care to the families trying to make sense of this 'incomprehensible de-creation of the self'.
272 pages, Paperback
First published August 13, 2019
About the author
Nicci Gerrard
21 books185 followersHalf of the writing team known as Nicci French . Nicci Gerrard & Sean French also write separately.
Gerard still works as a journalist for the Observer, covering high-profile trials.
Novels include Things We Knew Were True (2003), Solace (2005) and The Moment You Were Gone (2007), The Winter House (2009) and Missing Persons (2011).
Gerard still works as a journalist for the Observer, covering high-profile trials.
Novels include Things We Knew Were True (2003), Solace (2005) and The Moment You Were Gone (2007), The Winter House (2009) and Missing Persons (2011).
Ratings & Reviews
Friends & Following
Create a free account to discover what your friends think of this book!
Community Reviews
Displaying 1 - 30 of 142 reviews
January 7, 2020
Nicci Gerrard’s book about Alzheimer’s Disease is a combination of memoir and journalism. She tells about the last years of her father’s life, beautifully capturing him as a person both before and after Alzheimer’s struck. Gerrard manages to do what psychiatrist Arthur Kleinman tried (unsuccessfully) to accomplish in his recent book The Soul of Care: provide a sense of the personhood of a loved one stricken with a condition that seeks to erase the self. (In Kleinman’s case, it was his wife, Joan.)
Gerrard has also done considerable research, speaking with experts in the field (both academic and frontline clinicians), Alzheimer’s patients, and care givers. Her findings are rich and informative. She discusses the biological aspects of the disease, noting that while imaging and post-mortem studies of brain tissue often reveal obvious abnormalities in the appearance of cells and structures, these do not always correspond with the way patients may have presented clinically. A dissected brain may look very abnormal, yet in life the patient may have shown no signs of cognitive impairment. Conversely, brain slices from a patient who had been diagnosed with the disease may show no visible markers of dementia. What appears to be true, however, is that the characteristic amyloid plaques that are considered the hallmark of Alzheimer’s Disease may be the “ashes” after the damaging “fire”, rather than the cause of the impairment.
Gerrard notes that while we generally think of dementia as a disease that impairs memory, there are actually multiple indicators—a “bewildering number of cognitive impairments” that, according to one book, may number as high as 256. There are also multiple varieties of the disease itself. While Alzheimer’s, the most common form (accounting for one half of all dementia cases), typically presents with the loss of episodic memory (long-term memory of personal experience), there is a form of Alzheimer’s in which memory is preserved but visual processing is damaged: colours can extend beyond boundaries, objects can appear upside down or on a tilt, and the sufferer may have difficulty locating a door.
According to Gerrard, if we now seem to be in an Alzheimer’s epidemic, this is because the disease has come out of hiding. The statistics she cites give one pause. In 2015, an estimated 850,000 people in the UK were living with dementia, but it is believed that an equal number were undiagnosed. The number (in the UK) is expected to rise to over one million by 2021. According to the World Health Organization, an estimated 47 million worldwide have the disease; 5.5 million of them are in the US. Familiar with these numbers as Gerrard is, it is no wonder that she feels a sense of urgency about the need for society to address the many issues around humane and respectful care of the afflicted. (She and a friend began a campaign, named after her father, to push for this.) Our awareness, she says, brings social, political, and moral responsibility.
Gerrard doesn’t just write about dementia; she also illuminates a number of other related subjects: aging, including a sense of the normal cognitive changes experienced as we get older; advance directives; assisted dying; care giving; old age “homes” which almost never feel like “home”—because they are not physical extensions of the self in the way a real home is; death; grief; and the ways in which we later take our departed loved ones into our own psyches. I found one of her remarks about aging particularly striking: “We identify ourselves as young, because in one sense we still are. The older, current self is a newcomer, still something of a stranger, who we have to live with but who we don’t feel entirely comfortable with and may sometimes be distressed by.”
Like consultant neurologist Jules Montague, author of Lost and Found: Why Losing Our Memories Doesn’t Mean Losing Ourselves, Gerrard is interested in the question of personal identity in individuals who lose the narrative of their lives, the sense of the continuity of themselves and their stories over time: “I used to say that we are made of our memories, but what happens when our memories are lost? Who are we then? If we are out of our mind, where have we gone? If we have lost the plot, what happens to the story we are in?”
Gerrard’s book echoes a point that Dr. Montague makes about how alterations in moral capacity in patients with neurological disease can affect the way those patients are perceived by family members. If they remain kind and cooperative, patients are likely to be viewed as “essentially themselves” by those close to them. When Gerrard asked neurologist Dr. Martin Rossor, the National Director for Dementia Research at the National Institute for Health Research, if he believed that a self is ever wholly lost to the disease, his judgement was similar to that of Jules Montague. Perhaps a self is lost, he said, “when all empathy goes”.
Another of the author’s interests is the way in which the arts may be used to aid those with dementia. Since she is a patron of the Creative Dementia Arts Network, it is not surprising that Gerrard should devote some of the pages of her book to visual-arts and music programs that seem to be helping patients stay connected to the external world. She also highlights the work of painter William Utermohlen, whose self-portraits, completed as his disease claimed him, provide viewers with a window into the interior experience of the condition. Some of these paintings can be seen online. I am providing one link here that highlights the progression of his illness through his art. Utermohlen’s work shows us that not only is memory erased in Alzheimer’s, but a person’s spatial sense and perceptual capacities can be eroded as well: https://www.boredpanda.com/alzheimers...
The Last Ocean is a valuable work, which addresses some matters I haven’t seen discussed elsewhere. It is an honest and affecting piece. I do have a couple of relatively minor reservations about the book, however. At one point, Gerrard comments that animals “perish”, while humans “die”. I’m not sure I understand her distinction. If anything, our mortality links us with the other animals on earth. It seems to me Gerrard is insinuating that the death of nonhuman animals is a lesser thing than the death of humans—perhaps because animals lack the mental faculties, self awareness, consciousness, and sophisticated culture of humans. Having been with my own companion animals as their lives drew to a close, I believe that animals can certainly be aware that they are dying, and sometimes humans would be wise to take instruction from them. My second reservation about the book relates to some of Gerrard’s writing, especially towards the end: it is occasionally too self-consciously literary. Overly lyrical phrasing sometimes draws too much attention to itself and distracts from the content.
Gerrard has also done considerable research, speaking with experts in the field (both academic and frontline clinicians), Alzheimer’s patients, and care givers. Her findings are rich and informative. She discusses the biological aspects of the disease, noting that while imaging and post-mortem studies of brain tissue often reveal obvious abnormalities in the appearance of cells and structures, these do not always correspond with the way patients may have presented clinically. A dissected brain may look very abnormal, yet in life the patient may have shown no signs of cognitive impairment. Conversely, brain slices from a patient who had been diagnosed with the disease may show no visible markers of dementia. What appears to be true, however, is that the characteristic amyloid plaques that are considered the hallmark of Alzheimer’s Disease may be the “ashes” after the damaging “fire”, rather than the cause of the impairment.
Gerrard notes that while we generally think of dementia as a disease that impairs memory, there are actually multiple indicators—a “bewildering number of cognitive impairments” that, according to one book, may number as high as 256. There are also multiple varieties of the disease itself. While Alzheimer’s, the most common form (accounting for one half of all dementia cases), typically presents with the loss of episodic memory (long-term memory of personal experience), there is a form of Alzheimer’s in which memory is preserved but visual processing is damaged: colours can extend beyond boundaries, objects can appear upside down or on a tilt, and the sufferer may have difficulty locating a door.
According to Gerrard, if we now seem to be in an Alzheimer’s epidemic, this is because the disease has come out of hiding. The statistics she cites give one pause. In 2015, an estimated 850,000 people in the UK were living with dementia, but it is believed that an equal number were undiagnosed. The number (in the UK) is expected to rise to over one million by 2021. According to the World Health Organization, an estimated 47 million worldwide have the disease; 5.5 million of them are in the US. Familiar with these numbers as Gerrard is, it is no wonder that she feels a sense of urgency about the need for society to address the many issues around humane and respectful care of the afflicted. (She and a friend began a campaign, named after her father, to push for this.) Our awareness, she says, brings social, political, and moral responsibility.
Gerrard doesn’t just write about dementia; she also illuminates a number of other related subjects: aging, including a sense of the normal cognitive changes experienced as we get older; advance directives; assisted dying; care giving; old age “homes” which almost never feel like “home”—because they are not physical extensions of the self in the way a real home is; death; grief; and the ways in which we later take our departed loved ones into our own psyches. I found one of her remarks about aging particularly striking: “We identify ourselves as young, because in one sense we still are. The older, current self is a newcomer, still something of a stranger, who we have to live with but who we don’t feel entirely comfortable with and may sometimes be distressed by.”
Like consultant neurologist Jules Montague, author of Lost and Found: Why Losing Our Memories Doesn’t Mean Losing Ourselves, Gerrard is interested in the question of personal identity in individuals who lose the narrative of their lives, the sense of the continuity of themselves and their stories over time: “I used to say that we are made of our memories, but what happens when our memories are lost? Who are we then? If we are out of our mind, where have we gone? If we have lost the plot, what happens to the story we are in?”
Gerrard’s book echoes a point that Dr. Montague makes about how alterations in moral capacity in patients with neurological disease can affect the way those patients are perceived by family members. If they remain kind and cooperative, patients are likely to be viewed as “essentially themselves” by those close to them. When Gerrard asked neurologist Dr. Martin Rossor, the National Director for Dementia Research at the National Institute for Health Research, if he believed that a self is ever wholly lost to the disease, his judgement was similar to that of Jules Montague. Perhaps a self is lost, he said, “when all empathy goes”.
Another of the author’s interests is the way in which the arts may be used to aid those with dementia. Since she is a patron of the Creative Dementia Arts Network, it is not surprising that Gerrard should devote some of the pages of her book to visual-arts and music programs that seem to be helping patients stay connected to the external world. She also highlights the work of painter William Utermohlen, whose self-portraits, completed as his disease claimed him, provide viewers with a window into the interior experience of the condition. Some of these paintings can be seen online. I am providing one link here that highlights the progression of his illness through his art. Utermohlen’s work shows us that not only is memory erased in Alzheimer’s, but a person’s spatial sense and perceptual capacities can be eroded as well: https://www.boredpanda.com/alzheimers...
The Last Ocean is a valuable work, which addresses some matters I haven’t seen discussed elsewhere. It is an honest and affecting piece. I do have a couple of relatively minor reservations about the book, however. At one point, Gerrard comments that animals “perish”, while humans “die”. I’m not sure I understand her distinction. If anything, our mortality links us with the other animals on earth. It seems to me Gerrard is insinuating that the death of nonhuman animals is a lesser thing than the death of humans—perhaps because animals lack the mental faculties, self awareness, consciousness, and sophisticated culture of humans. Having been with my own companion animals as their lives drew to a close, I believe that animals can certainly be aware that they are dying, and sometimes humans would be wise to take instruction from them. My second reservation about the book relates to some of Gerrard’s writing, especially towards the end: it is occasionally too self-consciously literary. Overly lyrical phrasing sometimes draws too much attention to itself and distracts from the content.
May 2, 2019
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.
I would like to thank Net Galley and Penguin books UK for supplying a copy of this book in exchange for an honest review.
August 29, 2019
My dear mother is beginning to fade. This wonderful book feels as if someone is holding my hand, helping me to help her as her light dims. I know I’ll be dipping into its pages for nourishment as the process of saying goodbye begins. Thank you ever so much Nicci Gerard.
April 9, 2019
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.
(My thanks to the publisher for providing a digital copy of this title via Netgalley, which I chose to voluntarily read and review.)
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.
(My thanks to the publisher for providing a digital copy of this title via Netgalley, which I chose to voluntarily read and review.)
Read
January 19, 2021while the first chapter seemed a bit meander-y, once her narrative begins, Gerrard articulates the multiple perspectives, dilemmas and challenges we face as carers, patients, families, communities in trying to understand and support people with dementias.
at times absolutely gutting, other times a bit dispassionate, but always with respect for the multilayered and differently experienced and understood lives affected by that awful thief and pillager
at times absolutely gutting, other times a bit dispassionate, but always with respect for the multilayered and differently experienced and understood lives affected by that awful thief and pillager
August 29, 2019
”People talk of dementia as if it were a time bomb. In truth, the bomb went off long ago, but quietly, privately, out of sight: a hidden demolition job. Men and women who live with dementia are often missing people - forgotten and denied by a society that values independence, prosperity, youth and success and turns away from vulnerability. They are the reminders that we get old, we decay; death comes to us all in the end. Of all the illnesses, it is the one we now most fear. It is ‘the story of suffering ‘ - and like suffering, it lasts.”
I love when books challenge me...force me to open my eyes to things I’d rather not. Or when they push me to shift my perspective and the way I think about things. The Last Ocean did all of that. Nicci Gerrard takes us through what dementia does to both the person living with it and the caregivers. She talks about what her father went through (and her family), but also other people living with this diagnosis. It’s raw, real, helpful, and heartbreaking. Dementia has a deep, tremendous impact on not only the individual, but also on those who care for them.
I checked this book out from the library because I know (family and friends) who are living with dementia and I wanted to gain a better insight into the disease. Gerrard writes from an obvious place of experience and passion - I found the mix of her own personal experience with her father and those she interviewed to be incredibly helpful. It made me realize just how lonely and confusing it must be for the individual and the toll it takes on the caregivers. Her writing is beautiful and poetic - had it not been a library book, I would have highlighted and/dog-eared several excerpts and pages.
I had no idea just how prevalent dementia is and to know that ”someone develops dementia every three seconds” is incredibly scary. This book is powerful and I appreciate how Gerrard forces you to face that fear and leave with better insight and empathy.
I love when books challenge me...force me to open my eyes to things I’d rather not. Or when they push me to shift my perspective and the way I think about things. The Last Ocean did all of that. Nicci Gerrard takes us through what dementia does to both the person living with it and the caregivers. She talks about what her father went through (and her family), but also other people living with this diagnosis. It’s raw, real, helpful, and heartbreaking. Dementia has a deep, tremendous impact on not only the individual, but also on those who care for them.
I checked this book out from the library because I know (family and friends) who are living with dementia and I wanted to gain a better insight into the disease. Gerrard writes from an obvious place of experience and passion - I found the mix of her own personal experience with her father and those she interviewed to be incredibly helpful. It made me realize just how lonely and confusing it must be for the individual and the toll it takes on the caregivers. Her writing is beautiful and poetic - had it not been a library book, I would have highlighted and/dog-eared several excerpts and pages.
I had no idea just how prevalent dementia is and to know that ”someone develops dementia every three seconds” is incredibly scary. This book is powerful and I appreciate how Gerrard forces you to face that fear and leave with better insight and empathy.
August 31, 2019
Ik had verwacht dat het vooral ging over haar ervaringen met haar demente vader, maar het is daarnaast een informatief boek over ouder worden, dementie, zorg voor elkaar, dood en rouw. Een boeiend document!
February 20, 2021
4.5 stars. A very compassionate look at dementia and death with an emphasis on caregivers and loved ones.
February 28, 2021
Warmth for those who know the pain of dementia.
August 18, 2021
This book is perfection and I will scream into the ether about it forever. Please please please read it, whether you know or have known someone with dementia or not.
October 3, 2022
My mother is at the end stages of dementia so I found this a raw and painful book to read, but I also found it helpful with so much in it that resonated with me.
She writes about what Aged and Dementia Care could and should be like, and what (in my experience) it is mostly like:
“In the US, there are apparently more than 2 million cases of elder abuse each year in nursing homes; one in ten old people will experience some form of abuse. People with dementia are much more likely to be abused than those without it. What's more, elder abuse is probably the most under-reported form of violence in the country.
It's the same depressing story in the UK, where the care system is under severe pressure, with many experts saying it is disintegrating; home-care workers are paid paltry amounts of money to spend tiny amounts of time in the homes of the old and vulnerable. There have been over 23,000 allegations of home-care abuse in the last three years - which means there must be more, because often the people who are being abused can't tell tales (which, of course, is partly why they are being abused). Many care homes are understaffed and operating within a punitive, impossible budget; the tens of thousands of allegations of abuse over the last three years include, neglect, physical abuse, psychological abuse and sexual abuse.
All over the world, in poor countries and rich ones, hundreds and thousands of old and vulnerable people live the last part of their life in fear and distress, in loneliness and in sorrow.”
I am also a professional carer working in Aged Care in Australia, and the depressing UK story could have been written about here.
For the parts that resonated with me particularly as a daughter, the quotes from Pauline could have been from me;
“It's like she's the living dead,' says Pauline. 'A long time ago, I lost her. I talk, and there's no reaction. Sometimes, when she laughs, or something in the tone of her voice - then I recognise the way we were twenty years ago. You fill in the gaps and the memories. Then she leaves again. You say goodbye all the time.”
“I feel guilty for my mother's state,' she says. 'She is not dignified. She has lost everything she was. She is in this beautiful home. But every time I leave her I leave her alone. I feel guilty: I have left her there, knowing that she wanted to prevent living this way. She is helpless in every way and I am guilty all the time. And in some ways, it isn't good that she is round the corner, because she's too near me to distance myself from this feeling, which is overwhelming. And of course,' she adds, always scrupulously honest, 'it will be a relief to one day not have this feeling that I am leaving her there, in this beautiful place, in this awful situation.”
And then this from Nicci; “To mourn someone who is still alive brings a particular, complicated pain. And often it brings guilt; to mourn someone who has not yet died is to consign them to a kind of death.”
This book was written before Covid, and Nicci Gerrard is co-founder of John's Campaign which has campaigned to give carers of those with dementia the same rights as parents of children to accompany them in hospital. I would be interested to know how this fared through Covid, here in Victoria, Australia, the elderly in care have been cut off from family and friends for much of 2020 and 2021 with many dying completely alone. My own experience was that I couldn't visit my mother for much of 2020 and 2021 which meant I had no contact as she can no longer use a phone or any internet communication. Nothing was done to enable contact, and all enquiries from me were answered with "She's fine". Surprisingly she did still know me when I could go back in, and she even survived having Covid herself, but I hate to think of all the time she was there alone in her room and completely unvisited, and of course we lost a lot of important time. This has been a cruel time for the elderly and their families, particularly the elderly with dementia, and I hope protection will be put in place to prevent governments from imposing such inhumane restrictions again.
She writes about what Aged and Dementia Care could and should be like, and what (in my experience) it is mostly like:
“In the US, there are apparently more than 2 million cases of elder abuse each year in nursing homes; one in ten old people will experience some form of abuse. People with dementia are much more likely to be abused than those without it. What's more, elder abuse is probably the most under-reported form of violence in the country.
It's the same depressing story in the UK, where the care system is under severe pressure, with many experts saying it is disintegrating; home-care workers are paid paltry amounts of money to spend tiny amounts of time in the homes of the old and vulnerable. There have been over 23,000 allegations of home-care abuse in the last three years - which means there must be more, because often the people who are being abused can't tell tales (which, of course, is partly why they are being abused). Many care homes are understaffed and operating within a punitive, impossible budget; the tens of thousands of allegations of abuse over the last three years include, neglect, physical abuse, psychological abuse and sexual abuse.
All over the world, in poor countries and rich ones, hundreds and thousands of old and vulnerable people live the last part of their life in fear and distress, in loneliness and in sorrow.”
I am also a professional carer working in Aged Care in Australia, and the depressing UK story could have been written about here.
For the parts that resonated with me particularly as a daughter, the quotes from Pauline could have been from me;
“It's like she's the living dead,' says Pauline. 'A long time ago, I lost her. I talk, and there's no reaction. Sometimes, when she laughs, or something in the tone of her voice - then I recognise the way we were twenty years ago. You fill in the gaps and the memories. Then she leaves again. You say goodbye all the time.”
“I feel guilty for my mother's state,' she says. 'She is not dignified. She has lost everything she was. She is in this beautiful home. But every time I leave her I leave her alone. I feel guilty: I have left her there, knowing that she wanted to prevent living this way. She is helpless in every way and I am guilty all the time. And in some ways, it isn't good that she is round the corner, because she's too near me to distance myself from this feeling, which is overwhelming. And of course,' she adds, always scrupulously honest, 'it will be a relief to one day not have this feeling that I am leaving her there, in this beautiful place, in this awful situation.”
And then this from Nicci; “To mourn someone who is still alive brings a particular, complicated pain. And often it brings guilt; to mourn someone who has not yet died is to consign them to a kind of death.”
This book was written before Covid, and Nicci Gerrard is co-founder of John's Campaign which has campaigned to give carers of those with dementia the same rights as parents of children to accompany them in hospital. I would be interested to know how this fared through Covid, here in Victoria, Australia, the elderly in care have been cut off from family and friends for much of 2020 and 2021 with many dying completely alone. My own experience was that I couldn't visit my mother for much of 2020 and 2021 which meant I had no contact as she can no longer use a phone or any internet communication. Nothing was done to enable contact, and all enquiries from me were answered with "She's fine". Surprisingly she did still know me when I could go back in, and she even survived having Covid herself, but I hate to think of all the time she was there alone in her room and completely unvisited, and of course we lost a lot of important time. This has been a cruel time for the elderly and their families, particularly the elderly with dementia, and I hope protection will be put in place to prevent governments from imposing such inhumane restrictions again.
August 2, 2019
Behold, my first read of August.
I decided to broaden my horizon in my choice of Non-Fiction books. Since I have never read anything regarding Dementia, I thought that this book would be a perfect start. First and foremost, this book was difficult to read due to the intricate and heavy subject matter. However, I managed to finish it in 2 days! I'm proud of myself, to say the least.
Although the first few chapters were rather slow, I got used to the style of writing rather quickly.
I must say that I wholeheartedly enjoyed the last half of the book. It was so beautifully written and incredibly moving. What's more, it was insightful and eye-opening. I was awe-struck by the author's ability to write a sensitive matter with such poise and empathy. This hidden and dark world of dementia was unveiled in a different light.
Kudos to Nicci Gerrard.
I decided to broaden my horizon in my choice of Non-Fiction books. Since I have never read anything regarding Dementia, I thought that this book would be a perfect start. First and foremost, this book was difficult to read due to the intricate and heavy subject matter. However, I managed to finish it in 2 days! I'm proud of myself, to say the least.
Although the first few chapters were rather slow, I got used to the style of writing rather quickly.
I must say that I wholeheartedly enjoyed the last half of the book. It was so beautifully written and incredibly moving. What's more, it was insightful and eye-opening. I was awe-struck by the author's ability to write a sensitive matter with such poise and empathy. This hidden and dark world of dementia was unveiled in a different light.
Kudos to Nicci Gerrard.
June 29, 2025
Written by one half of the Nicci French writing duo, What Dementia Teaches Us About Love takes a look at how the diagnosis of dementia can rock a family's world and and how invisible both the sufferer and those who care for them can be in society, and how much better we need to become at talking and helping people going through it.
Nicci Gerrard speaks from both a personal and an research background throughout this book, referencing her own family's experience caring for her father with dementia as well as talking to doctors and experts about the multifaceted ways in which the diseases presents itself, other carers and their experiences with looking after loved ones and campaigners looking to bring compassion and understanding into hospital and end of life care for those with dementia.
I thought this was both emotional and well-researched and I feel like a majority of people will feel touched by this book or indeed see themselves represented in its pages as I don't know many people whose lives haven't been touched by dementia in some way whether it be a grandparent, elderly relative or parent.
Nicci Gerrard speaks from both a personal and an research background throughout this book, referencing her own family's experience caring for her father with dementia as well as talking to doctors and experts about the multifaceted ways in which the diseases presents itself, other carers and their experiences with looking after loved ones and campaigners looking to bring compassion and understanding into hospital and end of life care for those with dementia.
I thought this was both emotional and well-researched and I feel like a majority of people will feel touched by this book or indeed see themselves represented in its pages as I don't know many people whose lives haven't been touched by dementia in some way whether it be a grandparent, elderly relative or parent.
June 12, 2024
As someone who has a mother in the late stages of Alzheimer's, this was a challenging, heartbreaking yet affirming read. So many areas discussed resonated with what myself and my family have gone through and I'm glad I found this book.
Many parts brought me to tears, especially the last few chapters, as I witness many of the things written about first-hand.
"There's an anticipated, ambiguous grief - a premature mourning of the self or the beloved other"
"To mourn someone who is still alive brings a particular complicated pain and often it brings guilt"
"To mourn is to know what one has lost, but to mourn what one has not yet quite lost is to be in a kind of limbo"
Many parts brought me to tears, especially the last few chapters, as I witness many of the things written about first-hand.
"There's an anticipated, ambiguous grief - a premature mourning of the self or the beloved other"
"To mourn someone who is still alive brings a particular complicated pain and often it brings guilt"
"To mourn is to know what one has lost, but to mourn what one has not yet quite lost is to be in a kind of limbo"
December 6, 2023
When my father was diagnosed with Alzheimer's disease at the age of sixty, I ordered a great deal of books pertaining to the subject. Fiction, like the well-known "Still Alice", and non-fiction, that ought to give me more of an idea about dementia in general: how Alzheimer's works, what you should or should not do; practical. I started out reading the hands-on guides first. That seemed most important in the daily life that was now forever changed and yet somehow still quite the same. I read Kader Abdolah's account of his mother, who also had the disease. I read many, and too few. I still have a whole pile waiting in the wings. All of the reads were very interesting, you could take away something from each. But none feel so deeply personal and intimate as this book by Nicci Gerrard, who sat down with a great variety of people to actually talk about the disease and the impact it has on people's lives: those who live with it and those who have to watch from the sidelines as their loved one slowly fades away. Could it be that the book leaves a greater mark on me, now that my own father has passed away from the disease before the age of sixty-five and could rightfully be called a pensioner? It could, I will never know. But the fact remains that the portraits Gerrard paints feel terribly tangible, different from my own experience, yet the emotions behind them so very relatable I was often gasping for breath to contain the flood that was building within (and not succeeding to keep it there). So thank you, Nicci, for having written this book.
May 21, 2019
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.
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.
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 reviews of this book on Amazon, 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.
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.
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 reviews of this book on Amazon, 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.
November 10, 2019
This book basically says that watching someone be swallowed by dementia and caring for that person is pretty miserable. I knew that so I guess this was not the book for me. Maybe I have read too many books on aging since I realized that my mother's memory was failing. She has since died. Now my father is living in a memory care unit. Am I next?
May 14, 2020
This is quite a philosophical book, that made me think about society's views on Dementia and Old Age in general.
It raised some good questions on what it is that makes us human and how Dementia is having to make us reassess the definitions we set.
Memory and our ability to interact socially are such a huge part on what we perceive makes up a person and when this goes it can sometimes feel like the person themselves has left, and yet they are still them in so many ways, so what does this say about everything we use to define ourselves.
I appreciated how honest Nicci was in her experience and fear, as I feel many people would be lieing if they said they did not fear such an awful disease. Many things she said touched a nerve with me personally, and I liked that she also tried to place some emphasis on how awful it is for the career as well as the suffer.
My only criticism would be that she focuses on a very middle class artistic group of people. They were all professionals, who had quite a positive experience with disease. Or at least as positive as you can. She talks about the importance of music and art and poetry, which is all great and all very valid, but not once did I feel she mentioned people who were difficult.
I have lost two grandparents two dementia, one who has now sadly passed, and another who is still alive but is not the grandparent I knew, and both of them were and are incredibly difficult. I know it is not a nice way to look talk about people suffering and I know she was trying to create sympathy throughout, but I don't think displaying difficulties would have made me any less sympathetic. What if you are not from a professional class where you can become an inspiration?
I have witnessed how soul destroying dementia can be, and not just because you see the person dissappear, any person, but also because a person looses all humanity, when they become abusive and rude and socially inept. It is not always channeled through art or music or speech making. It is not always placid, sometimes the person fights even though they no longer understand they are fighting.
I would highly recommend this book, especially to a younger person who dementia might still seem like a distant problem. As it provides and insight and understanding, and is deeply moving. I just wish the case studies reflected a wider variety of people, not just those who became an inspiration. As I know dementia has a brutal side, and although this was alluded to, it was not explored.
It raised some good questions on what it is that makes us human and how Dementia is having to make us reassess the definitions we set.
Memory and our ability to interact socially are such a huge part on what we perceive makes up a person and when this goes it can sometimes feel like the person themselves has left, and yet they are still them in so many ways, so what does this say about everything we use to define ourselves.
I appreciated how honest Nicci was in her experience and fear, as I feel many people would be lieing if they said they did not fear such an awful disease. Many things she said touched a nerve with me personally, and I liked that she also tried to place some emphasis on how awful it is for the career as well as the suffer.
My only criticism would be that she focuses on a very middle class artistic group of people. They were all professionals, who had quite a positive experience with disease. Or at least as positive as you can. She talks about the importance of music and art and poetry, which is all great and all very valid, but not once did I feel she mentioned people who were difficult.
I have lost two grandparents two dementia, one who has now sadly passed, and another who is still alive but is not the grandparent I knew, and both of them were and are incredibly difficult. I know it is not a nice way to look talk about people suffering and I know she was trying to create sympathy throughout, but I don't think displaying difficulties would have made me any less sympathetic. What if you are not from a professional class where you can become an inspiration?
I have witnessed how soul destroying dementia can be, and not just because you see the person dissappear, any person, but also because a person looses all humanity, when they become abusive and rude and socially inept. It is not always channeled through art or music or speech making. It is not always placid, sometimes the person fights even though they no longer understand they are fighting.
I would highly recommend this book, especially to a younger person who dementia might still seem like a distant problem. As it provides and insight and understanding, and is deeply moving. I just wish the case studies reflected a wider variety of people, not just those who became an inspiration. As I know dementia has a brutal side, and although this was alluded to, it was not explored.
August 16, 2020
This was a heartbreaking journey. The first couple of chapters were slow and I was ready to give up (if I allowed myself to abandon books once I've started them) but soon the momentum picked up.
I learnt a lot. Not just about the science, the diagnosis, and the health and care system, but about different ways of thinking. This is a philosophical book in that it explores the relationship between the I, the self, the brain, and memory. It explores relationships and what makes us us.
I reminisced, reflected, and realised. The writing is compassionate without being smothering, uplifting without being saturated in positivity. The more devastating effects of dementia were touched upon but not explored in-depth.
As with the start of the book, I don't feel the final chapters were as strong as the central portion. They were, it's easy to imagine, incredibly difficult to write.
I recommend this book to young and old. We are all, it seems, terrified of dementia. This book was a step towards understanding that fear, and acknowledging that progress has been made but we (society and healthcare) still have a long way to go.
Their version of reality is denied - but reality is not a rigid structure; it's impermanent, multiple and subjective. There are many ways of seeing.
I learnt a lot. Not just about the science, the diagnosis, and the health and care system, but about different ways of thinking. This is a philosophical book in that it explores the relationship between the I, the self, the brain, and memory. It explores relationships and what makes us us.
I reminisced, reflected, and realised. The writing is compassionate without being smothering, uplifting without being saturated in positivity. The more devastating effects of dementia were touched upon but not explored in-depth.
To think about the final stages of dementia is to think about what it is to be human, and it is to acknowledge the essential loneliness and separation of the human mind.
As with the start of the book, I don't feel the final chapters were as strong as the central portion. They were, it's easy to imagine, incredibly difficult to write.
I recommend this book to young and old. We are all, it seems, terrified of dementia. This book was a step towards understanding that fear, and acknowledging that progress has been made but we (society and healthcare) still have a long way to go.
December 23, 2020
3.8
This book was very thought-provoking and made me question my thoughts on what I would want or what my family would do. I think this is obviously a very different read if you know someone who is or has suffered from dementia so I didn't get that extremely emotional feeling that a lot of other reviews have commented upon. But it did make me want to have conversations with my family in more detail about what we would want to do in these circumstances which I'm glad about it.
I've always been on the fence about assisted suicide but with a lean towards you having the right to death. This book sorted of solidified that lean (obviously only if the decision was made when the person was still able to make that decision and had written it out in their will etc). Gerrard touches upon the fact that in the West we now live long comfortable lives for the most part but we don't die well and are very uncomfortable by death. Most people don't want to die in hospital and yet so many of us do because making the choice to stop trying feels horrible. Listening to these testimonials was really insightful about different people's experiences and desires.
It was not all about the death and Gerrard does focus on people who have completely different views which I thought was a good way of exploring all elements of the debate. The book touches upon a lot of important issues like allowing carers to be in the hospital room, carers lives in general and how dementia sufferers need to be involved in the conversation of dementia.
Overall very insightful.
This book was very thought-provoking and made me question my thoughts on what I would want or what my family would do. I think this is obviously a very different read if you know someone who is or has suffered from dementia so I didn't get that extremely emotional feeling that a lot of other reviews have commented upon. But it did make me want to have conversations with my family in more detail about what we would want to do in these circumstances which I'm glad about it.
I've always been on the fence about assisted suicide but with a lean towards you having the right to death. This book sorted of solidified that lean (obviously only if the decision was made when the person was still able to make that decision and had written it out in their will etc). Gerrard touches upon the fact that in the West we now live long comfortable lives for the most part but we don't die well and are very uncomfortable by death. Most people don't want to die in hospital and yet so many of us do because making the choice to stop trying feels horrible. Listening to these testimonials was really insightful about different people's experiences and desires.
It was not all about the death and Gerrard does focus on people who have completely different views which I thought was a good way of exploring all elements of the debate. The book touches upon a lot of important issues like allowing carers to be in the hospital room, carers lives in general and how dementia sufferers need to be involved in the conversation of dementia.
Overall very insightful.
April 26, 2019
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.
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.
June 30, 2023
Dementia is a cruel disease. But it can be managed and “can contain hope and kindness and adventure as well as fear and sorrow and heart-wrenching loss”.
Gerrard’s account of her father’s dementia and eventual death is thoughtful and touching. She balances the horrors of it with the beautiful moments, and there are a few, even with this type of demise. She also touched on aging in general, carers and care homes, and the excruciating pain of making the right decisions in impossible situations.
Anyone with aging parents should read this. Dementia or not, everyone’s minds start to deteriorate as we age, and we must be forgiving and supportive when it does. “We have to focus on what a person with dementia can do, not what they can’t do.” I just wish I read this book earlier, when my mom was first diagnosed, rather than at the end of her life, but it was so helpful and insightful nonetheless.
Gerrard’s account of her father’s dementia and eventual death is thoughtful and touching. She balances the horrors of it with the beautiful moments, and there are a few, even with this type of demise. She also touched on aging in general, carers and care homes, and the excruciating pain of making the right decisions in impossible situations.
Anyone with aging parents should read this. Dementia or not, everyone’s minds start to deteriorate as we age, and we must be forgiving and supportive when it does. “We have to focus on what a person with dementia can do, not what they can’t do.” I just wish I read this book earlier, when my mom was first diagnosed, rather than at the end of her life, but it was so helpful and insightful nonetheless.
June 20, 2022
A thoroughly humane, beautifully written account of dementia. Gerrard begins and ends the book with stories of her own father, a last moonlit swim and funeral at which the sharing of memory makes him seem present. The book is composed most of interviews, people wrestling with their own diagnosis, doctors, and the carers. I had to put it down often because this disease that eats the lives of the sufferers and carers is grim. However, Gerrard offers some hopeful, transformative perspectives, particularly how art and music can reach the human being who is still there, how people try to
March 2, 2021
What a beautiful book taking the reader through all the stages of dementia – from diagnosis to eventual death – and the impact it has on carers, friends, life and of course the person diagnosed with dementia themselves. It's part memoir, part philosophical musing, and I enjoyed every part of it.
Nicci wrote that 'to think about the final stages of dementia is to think about what it is to be human,' and this book was a beautiful musing on what it really does mean to be human.
Nicci wrote that 'to think about the final stages of dementia is to think about what it is to be human,' and this book was a beautiful musing on what it really does mean to be human.
November 27, 2025
This could have been so much better. She obviously couldn’t decide if she wanted to write as a daughter or a a journalist, and the veering onto unrelated issues is just distracting. I have a close family member with this disease, before anyone tells me I don’t understand, but this is half unedited tragedy porn and half over-written journalistic spin.
December 16, 2019
mooi persoonlijk geschreven verhaal n.a.v. haar persoonlijke ervaring met het overlijden van haar vader en hoe goede zorg te faciliteren
January 18, 2021
Heart wrenching at times, but ultimately beautiful portrayal of the different sides of dementia, as experienced by the individual suffering from dementia and the often overlooked carer.
February 7, 2023
This book was very interesting…. Very heavy….
July 14, 2025
i didn't really emotionally connect with this book but the writing was poignant and the content landed so still 4*s
August 19, 2025
Dementia, in its brutal assault on memory, behaviour, personality and comprehension seems to unravel the very essence of self.
Nicci Gerrard’s honest, moving and at times profound book tackles the taboos and fears of this cruelest of diseases. The spine and the impetus for the book is the story of Gerrard’s own father’s decade long decline into dementia, including his precipitous final year. However, the narrative draws extensively on a wide variety of interviews with health care professionals, dementia sufferers and carers (both those still caring, and those who’s relative has died) that Gerrard undertook in the years following her father’s death.
Having seen my father-in-law’s dementia progress to its end state, and with my mother-in-law currently in a home with her dementia, this book naturally drew my eye in Waterstones.
Gerrad’s well-judged chapters give insights, both anecdotal and scientifically evidenced, into different stages of the disease’s progression and highlight the significant differences in presentation and development of what is more properly termed a syndrome than a universally identical experience of illness.
I have dog-eared many of the pages and scribbled pencil strokes to highlight a plethora of passages that resonated, or shone a bright light of illumination.
The prose is elegant, the narrative honest, the insights revealing.
There is Gerrard’s own anxiety as – like the rest of us – she sees herself in perpetual middle age, old age always a decade away, and can be undone by realizing the frazzled hassled woman approaching her along the aisle of a clothes shop is actually her own reflection in a mirror. Like the rest of us she fears those moments of disordered or truculently unco-operative memory that might be the harbinger of her own descent into dementia. (Should I myself be worried that I had to google “the word that means something it is forbidden to speak of” because I couldn’t summon “taboo” unaided from my memory). I remember my mother-in-law and my father-in-law being tested for dementia – the same test that President Trump was so proud of having ‘aced’ – with its sequences of words, addresses and clockface pictures. Gerrard puts herself through the same ordeal and is relieved to be given a clean bill of health.
There is always that strange sense of being both who we are now and every person we have been before. As Gerrard puts it,
We suffer from temporal vertigo, absorbing all the ages we have ever been. The old woman I saw lying in a hospital bed beside the photograph of herself joyful on a beach long ago housed both the old and the young self and everything inbetween.
Josiah Bancroft in The Arm of The Sphinx elegantly expressed this palimpsest of self with the elegant line
“We are, each of us, a multitude. I am not the man I was this morning, nor the man of yesterday. I am a throng of myself queued through time. We are, gentle reader, each a crowd within a crowd.”
It appears I share a common conception of ‘self’ that we are essentially the sum of all our memories. The point where making and retaining new memories becomes impossible represents some ‘event horizon’ of personality beyond which further growth has become impossible. As Gerrard puts it
‘To have and to make memories enables us to be the (often inaccurate, self-deceiving or misinformed) narrator of our own lives.’
Consequently dementia, in dismantling the structure of remembrance is a death delivered in installments, rather than a single event. A remorseless process that - at its end - leaves an empty shell of a body, little more than a living tombstone to the person that once inhabited it.
Gerrard poignantly writes about how
‘My father, in his years of forgetting, would gather stories about him in an act of self-protection. He had revisited them so often they were safe places for him.’
For dementia – in its early ‘knowing’ stages – is an anxious time for the sufferer who may take comfort in clinging to the familiar certainties – like taking shelter beneath the staircase (the strongest part of the house) in a blitz air raid as my mother used to tell me.
But our memories are not libraries of fixed volumes or files we peruse, but living things that are rewritten, possibly falsified, every time we go over them. Gerrard quotes Virginia Woolf saying
memory is like ‘a seamstress, and a capricious one at that,’ running her needle ‘in and out, up and down, hither and thither’, so that a whole ragbag of experiences is delicately and intricately joined together. And memories are no older than the last time they are thought of.
Indeed, the act of remembering potentially changes/over-writes the memory.
At one point Gerrard asks Professor Martin Rossor
…if he believes that a self is ever wholly lost to the disease, and he pondered. ‘Perhaps when all empathy goes,’ he replied eventually. ‘Perhaps then.’
It is an interesting observation that our ‘self’ is defined and extolled through our connections to and appreciation of others. A corollary of this that the book returns to, is that holding on to those connections – continuing to live them – is a vital element of dementia care. Gerrard’s father suffered an abrupt and irreversible decline through a five-week hospital stay when a noravirus outbreak prevented any visitors. Starved of interaction beyond the perfunctory necessities of medical care, he withdrew into himself. In a similar way, deafness too, is another accelerator of dementia decline. Anything that limits external connectivity will hasten the degradation of those internal neural networks that store not just our memories but our sense of self.
It makes sense that one of the major risk factors for dementia is loss of hearing, because that cuts a person off from their world. They retreat into themselves. As Alex Coulter says, ‘What we need most of al is connection.’
However, as Gerrard notes – at the point of initial diagnosis, sufferers and carers can feel a self-induced pressure to withdraw into themselves, to eschew social contact. This comes from a sense of shame from the dementia sufferer who knows they are not well, and fears behaving ‘badly’ in public. The whole dignity of adulthood is founded on understanding the world and how to interact with it. The dementia sufferer has the same uncertainty of a child in a new environment, or of me – a heathen in a catholic church service forever mistiming the points where one stands, sits or kneels – always out of the phase with the rest of the assured congregation.
Gerrard devotes a chapter to connectivity through the arts, emphasizing how music, dance, art and even creative writing have the power to kindle dormant connections. I am (very slowly) reading a book on The Singing Neanderthals and the idea that speech and music as means of communication were born from a single root – but music may be the elder sibling of the two. As dementia sufferers slip into familiar foxtrots or rhythms Gerrard poignantly observes the conflicting emotions that such ‘resurrection’ can inspire.
I don’t know if this was happy or sad. It makes me want to howl. But I do know that art can seem magical on the way it can find a person who had seemed quite lost. A golden thread weaving its way through the razed civilization, the rubble and chaos and shattered meanings, and a light glimmers in the darkness and a voice speaks. I am here. I am here. I was always here.
In my fiction writing – imagining fantastic worlds – I like playing with the idea that the personality, the soul, can somehow be disembodied and transplanted into a different host, that the soul, the mind and the body are discrete separable entities. I know colleagues who describe their frustratingly unco-operative bodies as a meat cage in which their mind is confined – as though the mind were like a dalek operating the pepper-pot personalized tanks that have fascinated fans of Dr Who for almost as long as I have been alive. However, reality (and biology) are more complex than that. For a start, memories are not stored in some neat library shelving system, but are retained in neural networks. Each memory is a web of interconnections that can be strengthened by repeated firings, or that can be accessed by a circuitous route (if the name of an actor on the screen eluded you – or your ‘mind’ keeps throwing up the wrong answer – then you can maybe access the information through remembering other films they were in, or other co-stars to fire up a different net of association). There is a kind of deep muscle memory, for example where music can re-ignite the skills of dancing, or where hands presented with a piano keyboard may once again skip with speed and accuracy across the ivories. I wonder too, if there is a kind of physiological memory – of chemical stimuli. When my father-in-law was distressed by events we comforted ourselves with the thought that in an hour’s time he would have no memory of what had just happened – but I wondered if the distress lingered in elevated cortisol levels. Do other hormonal memories recreate feelings of memories that have died? So I ask myself is there a level below memory at which the self still exists?
As one carer interviewee says
Her husband is still there and will always be there. Somewhere. ‘The personhood of a person persists past coherence and past logic. It is our frame; inside of ourselves.’
As Gerrard observes.
Our minds, which have power over our bodies, are in our bodies and are our bodies: we cannot separate the two. Words, self-expression can tangibly help pain and suffering. Art can be medicine, for body and soul.
Gerrard also examines the care for dementia patients, in homes that are not Home where safety is prioritized more than connectivity, and hospitals that are places of urgent intervention to get people better but patients like her father can end up in an effective solitary confinement.
Throughout the book that theme of connectivity recurs and is epitomized in nurse Naomi Fell’s validation therapy to support people at the end stages of dementia.
‘Their desperate need for connection is all inside now… If the person is all alone, even if they’re very, very deteriorated, there is a longing for this kind of closeness.’
I could write more about this thought provoking book, but should probably stop. My key takeaway is that even as dementia attacks those internal connections, the neural networks that embody who we are, it is imperative to foster and bolster those failing synapses with the stimulation and reassurance of external connection, and to see the levels at which connection can be made beyond mere words and through art.
Nicci Gerrard’s honest, moving and at times profound book tackles the taboos and fears of this cruelest of diseases. The spine and the impetus for the book is the story of Gerrard’s own father’s decade long decline into dementia, including his precipitous final year. However, the narrative draws extensively on a wide variety of interviews with health care professionals, dementia sufferers and carers (both those still caring, and those who’s relative has died) that Gerrard undertook in the years following her father’s death.
Having seen my father-in-law’s dementia progress to its end state, and with my mother-in-law currently in a home with her dementia, this book naturally drew my eye in Waterstones.
Gerrad’s well-judged chapters give insights, both anecdotal and scientifically evidenced, into different stages of the disease’s progression and highlight the significant differences in presentation and development of what is more properly termed a syndrome than a universally identical experience of illness.
I have dog-eared many of the pages and scribbled pencil strokes to highlight a plethora of passages that resonated, or shone a bright light of illumination.
The prose is elegant, the narrative honest, the insights revealing.
There is Gerrard’s own anxiety as – like the rest of us – she sees herself in perpetual middle age, old age always a decade away, and can be undone by realizing the frazzled hassled woman approaching her along the aisle of a clothes shop is actually her own reflection in a mirror. Like the rest of us she fears those moments of disordered or truculently unco-operative memory that might be the harbinger of her own descent into dementia. (Should I myself be worried that I had to google “the word that means something it is forbidden to speak of” because I couldn’t summon “taboo” unaided from my memory). I remember my mother-in-law and my father-in-law being tested for dementia – the same test that President Trump was so proud of having ‘aced’ – with its sequences of words, addresses and clockface pictures. Gerrard puts herself through the same ordeal and is relieved to be given a clean bill of health.
There is always that strange sense of being both who we are now and every person we have been before. As Gerrard puts it,
We suffer from temporal vertigo, absorbing all the ages we have ever been. The old woman I saw lying in a hospital bed beside the photograph of herself joyful on a beach long ago housed both the old and the young self and everything inbetween.
Josiah Bancroft in The Arm of The Sphinx elegantly expressed this palimpsest of self with the elegant line
“We are, each of us, a multitude. I am not the man I was this morning, nor the man of yesterday. I am a throng of myself queued through time. We are, gentle reader, each a crowd within a crowd.”
It appears I share a common conception of ‘self’ that we are essentially the sum of all our memories. The point where making and retaining new memories becomes impossible represents some ‘event horizon’ of personality beyond which further growth has become impossible. As Gerrard puts it
‘To have and to make memories enables us to be the (often inaccurate, self-deceiving or misinformed) narrator of our own lives.’
Consequently dementia, in dismantling the structure of remembrance is a death delivered in installments, rather than a single event. A remorseless process that - at its end - leaves an empty shell of a body, little more than a living tombstone to the person that once inhabited it.
Gerrard poignantly writes about how
‘My father, in his years of forgetting, would gather stories about him in an act of self-protection. He had revisited them so often they were safe places for him.’
For dementia – in its early ‘knowing’ stages – is an anxious time for the sufferer who may take comfort in clinging to the familiar certainties – like taking shelter beneath the staircase (the strongest part of the house) in a blitz air raid as my mother used to tell me.
But our memories are not libraries of fixed volumes or files we peruse, but living things that are rewritten, possibly falsified, every time we go over them. Gerrard quotes Virginia Woolf saying
memory is like ‘a seamstress, and a capricious one at that,’ running her needle ‘in and out, up and down, hither and thither’, so that a whole ragbag of experiences is delicately and intricately joined together. And memories are no older than the last time they are thought of.
Indeed, the act of remembering potentially changes/over-writes the memory.
At one point Gerrard asks Professor Martin Rossor
…if he believes that a self is ever wholly lost to the disease, and he pondered. ‘Perhaps when all empathy goes,’ he replied eventually. ‘Perhaps then.’
It is an interesting observation that our ‘self’ is defined and extolled through our connections to and appreciation of others. A corollary of this that the book returns to, is that holding on to those connections – continuing to live them – is a vital element of dementia care. Gerrard’s father suffered an abrupt and irreversible decline through a five-week hospital stay when a noravirus outbreak prevented any visitors. Starved of interaction beyond the perfunctory necessities of medical care, he withdrew into himself. In a similar way, deafness too, is another accelerator of dementia decline. Anything that limits external connectivity will hasten the degradation of those internal neural networks that store not just our memories but our sense of self.
It makes sense that one of the major risk factors for dementia is loss of hearing, because that cuts a person off from their world. They retreat into themselves. As Alex Coulter says, ‘What we need most of al is connection.’
However, as Gerrard notes – at the point of initial diagnosis, sufferers and carers can feel a self-induced pressure to withdraw into themselves, to eschew social contact. This comes from a sense of shame from the dementia sufferer who knows they are not well, and fears behaving ‘badly’ in public. The whole dignity of adulthood is founded on understanding the world and how to interact with it. The dementia sufferer has the same uncertainty of a child in a new environment, or of me – a heathen in a catholic church service forever mistiming the points where one stands, sits or kneels – always out of the phase with the rest of the assured congregation.
Gerrard devotes a chapter to connectivity through the arts, emphasizing how music, dance, art and even creative writing have the power to kindle dormant connections. I am (very slowly) reading a book on The Singing Neanderthals and the idea that speech and music as means of communication were born from a single root – but music may be the elder sibling of the two. As dementia sufferers slip into familiar foxtrots or rhythms Gerrard poignantly observes the conflicting emotions that such ‘resurrection’ can inspire.
I don’t know if this was happy or sad. It makes me want to howl. But I do know that art can seem magical on the way it can find a person who had seemed quite lost. A golden thread weaving its way through the razed civilization, the rubble and chaos and shattered meanings, and a light glimmers in the darkness and a voice speaks. I am here. I am here. I was always here.
In my fiction writing – imagining fantastic worlds – I like playing with the idea that the personality, the soul, can somehow be disembodied and transplanted into a different host, that the soul, the mind and the body are discrete separable entities. I know colleagues who describe their frustratingly unco-operative bodies as a meat cage in which their mind is confined – as though the mind were like a dalek operating the pepper-pot personalized tanks that have fascinated fans of Dr Who for almost as long as I have been alive. However, reality (and biology) are more complex than that. For a start, memories are not stored in some neat library shelving system, but are retained in neural networks. Each memory is a web of interconnections that can be strengthened by repeated firings, or that can be accessed by a circuitous route (if the name of an actor on the screen eluded you – or your ‘mind’ keeps throwing up the wrong answer – then you can maybe access the information through remembering other films they were in, or other co-stars to fire up a different net of association). There is a kind of deep muscle memory, for example where music can re-ignite the skills of dancing, or where hands presented with a piano keyboard may once again skip with speed and accuracy across the ivories. I wonder too, if there is a kind of physiological memory – of chemical stimuli. When my father-in-law was distressed by events we comforted ourselves with the thought that in an hour’s time he would have no memory of what had just happened – but I wondered if the distress lingered in elevated cortisol levels. Do other hormonal memories recreate feelings of memories that have died? So I ask myself is there a level below memory at which the self still exists?
As one carer interviewee says
Her husband is still there and will always be there. Somewhere. ‘The personhood of a person persists past coherence and past logic. It is our frame; inside of ourselves.’
As Gerrard observes.
Our minds, which have power over our bodies, are in our bodies and are our bodies: we cannot separate the two. Words, self-expression can tangibly help pain and suffering. Art can be medicine, for body and soul.
Gerrard also examines the care for dementia patients, in homes that are not Home where safety is prioritized more than connectivity, and hospitals that are places of urgent intervention to get people better but patients like her father can end up in an effective solitary confinement.
Throughout the book that theme of connectivity recurs and is epitomized in nurse Naomi Fell’s validation therapy to support people at the end stages of dementia.
‘Their desperate need for connection is all inside now… If the person is all alone, even if they’re very, very deteriorated, there is a longing for this kind of closeness.’
I could write more about this thought provoking book, but should probably stop. My key takeaway is that even as dementia attacks those internal connections, the neural networks that embody who we are, it is imperative to foster and bolster those failing synapses with the stimulation and reassurance of external connection, and to see the levels at which connection can be made beyond mere words and through art.
Displaying 1 - 30 of 142 reviews