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Travellers to Unimaginable Lands: Dementia, Carers and the Hidden Workings of the Mind
A Financial Times 'Book to Read in 2023' A husband believes his wife is an imposter. A man's sudden, intense Catholic piety provokes his wife. A mother and daughter struggle to come to terms with the disease that intensifies an already dependent relationship. At their root, these existential dilemmas grow out of long-established patterns of behaviour that bind together patients and caregivers. Travellers to Unimaginable Lands explores the complex and profound psychology of caregiving, illuminating how the healthy brain's biases and intuitions make caring for people with dementia disorders so profoundly and inherently difficult. Blending neuroscience, psychology, philosophy and literature with beautifully-observed case studies, Kiper illuminates the underlying mental mechanisms behind carers' experiences, dispels the myth of the perfect caregiver and, in the process, opens the door to understanding and forgiveness.
272 pages, Hardcover
Published March 2, 2023
340 people are currently reading
4334 people want to read
About the author
Dasha Kiper
1 book18 followersDasha Kiper is the clinical consulting director of support groups at The CaringKind (formerly 'The Alzheimer's Association'). She was born in Russia, raised in San Francisco, and makes her home in New York. She first became a live-in caregiver as a graduate student at Columbia University where she received an MA in Clinical Psychology. For the past decade she has counseled caregivers, led support groups, and trained and supervised mental health professionals, as well as former caregivers, who now lead support groups.
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March 30, 2023This seems to be more about caregivers' stress to their family or clients who have Alzheimers than it does about dementia itself. There's something a bit off about the tone of the book but I can't put my finger on what, as yet.
March 31, 2023
Dasha Kiper was once on track for a Ph.D. in psychology, but she became weary of the abstract and theoretical world of academia, finding herself to be more interested in grounded, real-world work with people. During her graduate-school years, she looked after an elderly Holocaust survivor who suffered from dementia, viewing this “as an opportunity to observe how a person fights to preserve his sense of self, even as a neurological disease was eroding it.” Kiper ended up becoming the consulting clinical director of support groups for an Alzheimer’s organization. She now facilitates meetings for family members and friends who care for dementia patients. Long an admirer of neurologist Oliver Sacks’s methods of clinical observation, emotional engagement with, and affection for his patients, she has modelled her approach to working with people on his.
In her professional role, Kiper regularly hears caregivers confess to feelings of guilt over the intense frustration and anger they feel dealing with their loved ones. These people know that the brain of a dementia patient doesn’t fire on all cylinders, yet almost all get sucked into arguments and power struggles with the impaired person, feeling compelled to present “the facts” to one who seldom comprehends and almost certainly won’t remember them, even if there is the occasional flicker of understanding. Caregivers are ashamed of their lack of composure—or what Oliver Sacks identified as the indispensable “compassionate detachment” one needs to assist the neurologically handicapped. Kiper began to wonder if the frustrating caregiver-patient interactions she kept hearing about might be due to something other than mere impatience.
In this excellent book, permeated by her warm intelligence, she focuses on the psychology of dementia caregivers, the “invisible victims of the disease,” who “unwittingly become part of the madness” and even mirror the irrationality and distortions of their charges. Based on cognitive and neuroscientific research, insights from literary fiction, and her own experience, Kiper proposes that much of the difficulty caregivers face in dealing with patients is due to the default setting of the healthy brain, which operates with a number of cognitive biases and philosophical intuitions. For one thing, we humans are wired to regard others as having the ability to learn, incorporate new information, be self-reflective, and maintain a continuous, essential core self. This perspective prevails even when we know we’re dealing with those whose cognitive faculties have been drastically diminished.
Kiper effectively uses case studies of caregivers she’s worked with to explain (among other things) why
(1) we cannot remember that dementia patients forget;
(2) family members take so long to recognize the disease;
and
(3) it’s so hard to change our knee-jerk, emotional reactions to the cognitively impaired person. She also explores the defenses that the mind uses to cope with the chaos and confusion that dementia wreaks.
As might be expected, a consideration of how memory works is a major focus of the book. Kiper points out that the distinction between the impaired and normal brain is not as clear-cut as one might think. Typically, functioning memory is not a one-to-one correspondence with reality, nor is it designed for accuracy. In fact, memory doesn’t actually exist to serve “objective” reality, but rather to create meaningful narratives about who we are. None of us can retain all the details about what we experience. Normal subjects have compensatory strategies to offset the memory loss that naturally occurs, relying on the employment of concepts, categorizations, and generalizations. In short, our minds summarize. Later, when we retrieve a memory, we’re not actually “summoning” a previous event but “reconstructing” past experience based on some elements of what happened, on a general sense of what might have happened, and on our current beliefs and feelings. The way normal memory works affects how we view and interact with Alzheimer’s patients.
Another basic principle about mental function that Kiper regularly returns to is that the brain’s objective isn’t “to be wise or right or even reasonable, but to conserve energy.” So much of how we think and behave is done on automatic pilot. Citing psychologist Daniel Kahneman’s book Thinking, Fast and Slow, Kiper says our usual effortless, automatic mode of “fast” thinking, which forms immediate impressions by recruiting intuitions, biases, and assumptions, gets us into trouble with the Alzheimer’s patient for whom many of these assumptions no longer apply. It’s difficult for a harried caregiver to switch in the moment to the “slow,” more deliberative thinking mode that dealing with a dementia patient requires.
Kiper’s book is a rich and fascinating one. I’ve barely scratched the surface here. While it’s not of the self-help genre, Travelers to Unimaginable Lands is certainly a helpful, instructive, and accessible book—not only for caregivers who can’t understand their erratic and irrational behaviour (never mind forgive themselves for it), but also for those interested in the unconscious brain processes that govern the ways we think and act.
In her professional role, Kiper regularly hears caregivers confess to feelings of guilt over the intense frustration and anger they feel dealing with their loved ones. These people know that the brain of a dementia patient doesn’t fire on all cylinders, yet almost all get sucked into arguments and power struggles with the impaired person, feeling compelled to present “the facts” to one who seldom comprehends and almost certainly won’t remember them, even if there is the occasional flicker of understanding. Caregivers are ashamed of their lack of composure—or what Oliver Sacks identified as the indispensable “compassionate detachment” one needs to assist the neurologically handicapped. Kiper began to wonder if the frustrating caregiver-patient interactions she kept hearing about might be due to something other than mere impatience.
In this excellent book, permeated by her warm intelligence, she focuses on the psychology of dementia caregivers, the “invisible victims of the disease,” who “unwittingly become part of the madness” and even mirror the irrationality and distortions of their charges. Based on cognitive and neuroscientific research, insights from literary fiction, and her own experience, Kiper proposes that much of the difficulty caregivers face in dealing with patients is due to the default setting of the healthy brain, which operates with a number of cognitive biases and philosophical intuitions. For one thing, we humans are wired to regard others as having the ability to learn, incorporate new information, be self-reflective, and maintain a continuous, essential core self. This perspective prevails even when we know we’re dealing with those whose cognitive faculties have been drastically diminished.
Kiper effectively uses case studies of caregivers she’s worked with to explain (among other things) why
(1) we cannot remember that dementia patients forget;
(2) family members take so long to recognize the disease;
and
(3) it’s so hard to change our knee-jerk, emotional reactions to the cognitively impaired person. She also explores the defenses that the mind uses to cope with the chaos and confusion that dementia wreaks.
As might be expected, a consideration of how memory works is a major focus of the book. Kiper points out that the distinction between the impaired and normal brain is not as clear-cut as one might think. Typically, functioning memory is not a one-to-one correspondence with reality, nor is it designed for accuracy. In fact, memory doesn’t actually exist to serve “objective” reality, but rather to create meaningful narratives about who we are. None of us can retain all the details about what we experience. Normal subjects have compensatory strategies to offset the memory loss that naturally occurs, relying on the employment of concepts, categorizations, and generalizations. In short, our minds summarize. Later, when we retrieve a memory, we’re not actually “summoning” a previous event but “reconstructing” past experience based on some elements of what happened, on a general sense of what might have happened, and on our current beliefs and feelings. The way normal memory works affects how we view and interact with Alzheimer’s patients.
Another basic principle about mental function that Kiper regularly returns to is that the brain’s objective isn’t “to be wise or right or even reasonable, but to conserve energy.” So much of how we think and behave is done on automatic pilot. Citing psychologist Daniel Kahneman’s book Thinking, Fast and Slow, Kiper says our usual effortless, automatic mode of “fast” thinking, which forms immediate impressions by recruiting intuitions, biases, and assumptions, gets us into trouble with the Alzheimer’s patient for whom many of these assumptions no longer apply. It’s difficult for a harried caregiver to switch in the moment to the “slow,” more deliberative thinking mode that dealing with a dementia patient requires.
Kiper’s book is a rich and fascinating one. I’ve barely scratched the surface here. While it’s not of the self-help genre, Travelers to Unimaginable Lands is certainly a helpful, instructive, and accessible book—not only for caregivers who can’t understand their erratic and irrational behaviour (never mind forgive themselves for it), but also for those interested in the unconscious brain processes that govern the ways we think and act.
June 22, 2024
This book is a masterwork and a masterclass. I've been holding onto it awhile, not knowing when quite to read it~ The Brookline Public Library is now looking for $28 for me to replace it, and believe me its worth so much more. But this last month I have been reading it slowly, a chapter at a time here and there. But I am so grateful for this book and for Dasha Kiper. More than she could possibly know.
I often stay away from books where Alzheimers-Dementia is a part of the storyline, though it emerges often whether we want it to or not. I also really tend away from non-fiction, even when its excellent. But something in me knew this book would hit the right chord and it absolutely did.
So we all know something or other about the devastation of this disease, and how to best approach it. But only a certain select club understands just how hard this is on loved ones and caregivers. What I appreciated most about this book is that when a brain deteriorates and loses its memory, what is astonishingly not lost is personality and dynamics. A long wound or bond between two continues to exist. So any prior dynamical repetition, potentially even the ones that cut to the core, they are still there. The caregiver has that gift that keeps on giving (although when positive that is amazing) and yet at this point it becomes an "unwinnable fight" as if it were ever "winnable" in the first place. This book is actually about how hard these losses and personality changes or exacerbations are on the caregivers and loved ones, who are carrying longtime wounds of their own on top of the deep loss and natural frustration they are experiencing. Sounds tough. But the book is actually loving and freeing. Through the groups and consults Ms. Kiper offers, she could not be more loving, and more compassionate to the duo and families. She is gentle and forgiving, and invites us to forgive ourselves and the person we love, and truly let go, and focus on the love. And not by asking us to erase our own angers and losses. Kind of to hold them side by side on the journey. Now much of this take isn't her exact words. Its part feeling, and part Psychologist Daughter on the Journey trying to figure this out and have takeaway and a gift for others. Its truly about honoring your feelings and the person you love, but getting to truly love by compassion for self and other, and letting go. Its a more spiritual grief, and I am loving it and soaking it up.
The question I am left with, for Dasha, myself, and anyone who wants to respond, is this. I am "lucky" in a sense that I don't have to deal with my mother every day. (I call every day). I am also quite worried that she lives all the way across the country and that my poor father has this on his shoulders all the time. I was quite focused on that. I actually believed my father wouldn't be able to make it, and deal and that there will be a time where my father will just "fall away". But here we are and against every intuition I have had, usually which used to be strong and on point, he is the one there steadfast. They are still in love and having fun, and lonely in incredibly different ways, and he loves her, and she is absolutely driving him maddenly crazy. He is stronger in his steadfast love than I had imagined. But that is my Dad, and the legacy of that is a gift of which I am incredibly proud. Truth be told, I had already forgiven him for cutting out if he needed to, although that would be the hugest loss of my life. But I love him enough to give him that if he needed it. And I thank him beyond words as a gift to me, that he doesn't and won't put this in my lap until he has no choice to. Even if all of this is unconscious and just living our lives, that is my process.
My mother is Jolly, which has been a gift to me. I know there can be personality changes, and that perhaps that will come. But my loving mother has always had a critical judging negative edge, and the gift Dementia has given us, is a reprieve, there is no sign of it. She's just loving and jolly and very into the beauty of life right now. She has let go, and that is a gift to her during this challenging chapter. She is all love. And when I mess up and remind her that she is in serious trouble, she seems not to notice or just laughs or makes up some flimsy non-sensical excuse. She has made this easy. I am lucky these days on so many fronts. But I do know its a long journey.
Here is my dilemma. My brother and I bought her a red light helmet. There is absolute incredibly positive research that this can help her. This can reverse some of her symptoms, perhaps all of them, and this is medically backed. All she has to do is wear it 28 minutes every other day. And I cannot get her for the life of her to do this one thing that will improve her. I have tried to get people in who will help her with this, and they understand they need to get in another way first, and that they can't fight with her on this, and that makes sense to me. But its sitting in her house unused and she walks past it every day, and this is just something she cannot do. So many things I won't fight with her on and I can let go. But this one I have swallowed, but is hard to swallow. This can potentially to absolutely help her, and therefore help my father. But... she's also happy and jolly and ultimately this decision is her own. Its not mine to make. So I have some practice in letting go, albeit from afar. But this one irks me. My story reminds me of a story from the book. Two and a half years ago, just before her symptoms became apparent, we are having dinner with friends in Florida, and she is saying about someone's parent, there are ways to completely reverse Alzheimers. No one should have to suffer with this. We even sent her the books as a gift from Amazon the next day. Within a year I am combing those books in their home, and how many times have I confronted her since, and said, Mom you are a Holistic Health Teacher, Advocate, and Warrior your whole life. You have always stood for being a fighter, and for Alternative Medicine. Its been your whole life. You have always said no one should suffer with this. I need you to be that fighter now. I need you just to do what you have done your whole life. You can reverse this. This fight is who you are. And she seems somewhat impressed by that for the moment, but the key moment that got me, is when she said, "Suffering, I am not suffering." "Well, I am, I retorted." And that my friends, is the point of Dasha Kiper's book. Who is the one who is suffering, and who is is the one who needs to let go. I have largely let go of this. Once in a while I am back on it, but its not my life and choice, even if she has Dementia. Its still her choice and his - my Dad's. My job is to make things easier for them. I guess I have answered that question. But my question still remains in the back of my mind. Should it matter, if the one thing you are fighting about could actually help the Dementia in the first place? Perhaps we will never know. But this is the world I am living in now, so we shall see how the story goes. Keep you all posted.
I often stay away from books where Alzheimers-Dementia is a part of the storyline, though it emerges often whether we want it to or not. I also really tend away from non-fiction, even when its excellent. But something in me knew this book would hit the right chord and it absolutely did.
So we all know something or other about the devastation of this disease, and how to best approach it. But only a certain select club understands just how hard this is on loved ones and caregivers. What I appreciated most about this book is that when a brain deteriorates and loses its memory, what is astonishingly not lost is personality and dynamics. A long wound or bond between two continues to exist. So any prior dynamical repetition, potentially even the ones that cut to the core, they are still there. The caregiver has that gift that keeps on giving (although when positive that is amazing) and yet at this point it becomes an "unwinnable fight" as if it were ever "winnable" in the first place. This book is actually about how hard these losses and personality changes or exacerbations are on the caregivers and loved ones, who are carrying longtime wounds of their own on top of the deep loss and natural frustration they are experiencing. Sounds tough. But the book is actually loving and freeing. Through the groups and consults Ms. Kiper offers, she could not be more loving, and more compassionate to the duo and families. She is gentle and forgiving, and invites us to forgive ourselves and the person we love, and truly let go, and focus on the love. And not by asking us to erase our own angers and losses. Kind of to hold them side by side on the journey. Now much of this take isn't her exact words. Its part feeling, and part Psychologist Daughter on the Journey trying to figure this out and have takeaway and a gift for others. Its truly about honoring your feelings and the person you love, but getting to truly love by compassion for self and other, and letting go. Its a more spiritual grief, and I am loving it and soaking it up.
The question I am left with, for Dasha, myself, and anyone who wants to respond, is this. I am "lucky" in a sense that I don't have to deal with my mother every day. (I call every day). I am also quite worried that she lives all the way across the country and that my poor father has this on his shoulders all the time. I was quite focused on that. I actually believed my father wouldn't be able to make it, and deal and that there will be a time where my father will just "fall away". But here we are and against every intuition I have had, usually which used to be strong and on point, he is the one there steadfast. They are still in love and having fun, and lonely in incredibly different ways, and he loves her, and she is absolutely driving him maddenly crazy. He is stronger in his steadfast love than I had imagined. But that is my Dad, and the legacy of that is a gift of which I am incredibly proud. Truth be told, I had already forgiven him for cutting out if he needed to, although that would be the hugest loss of my life. But I love him enough to give him that if he needed it. And I thank him beyond words as a gift to me, that he doesn't and won't put this in my lap until he has no choice to. Even if all of this is unconscious and just living our lives, that is my process.
My mother is Jolly, which has been a gift to me. I know there can be personality changes, and that perhaps that will come. But my loving mother has always had a critical judging negative edge, and the gift Dementia has given us, is a reprieve, there is no sign of it. She's just loving and jolly and very into the beauty of life right now. She has let go, and that is a gift to her during this challenging chapter. She is all love. And when I mess up and remind her that she is in serious trouble, she seems not to notice or just laughs or makes up some flimsy non-sensical excuse. She has made this easy. I am lucky these days on so many fronts. But I do know its a long journey.
Here is my dilemma. My brother and I bought her a red light helmet. There is absolute incredibly positive research that this can help her. This can reverse some of her symptoms, perhaps all of them, and this is medically backed. All she has to do is wear it 28 minutes every other day. And I cannot get her for the life of her to do this one thing that will improve her. I have tried to get people in who will help her with this, and they understand they need to get in another way first, and that they can't fight with her on this, and that makes sense to me. But its sitting in her house unused and she walks past it every day, and this is just something she cannot do. So many things I won't fight with her on and I can let go. But this one I have swallowed, but is hard to swallow. This can potentially to absolutely help her, and therefore help my father. But... she's also happy and jolly and ultimately this decision is her own. Its not mine to make. So I have some practice in letting go, albeit from afar. But this one irks me. My story reminds me of a story from the book. Two and a half years ago, just before her symptoms became apparent, we are having dinner with friends in Florida, and she is saying about someone's parent, there are ways to completely reverse Alzheimers. No one should have to suffer with this. We even sent her the books as a gift from Amazon the next day. Within a year I am combing those books in their home, and how many times have I confronted her since, and said, Mom you are a Holistic Health Teacher, Advocate, and Warrior your whole life. You have always stood for being a fighter, and for Alternative Medicine. Its been your whole life. You have always said no one should suffer with this. I need you to be that fighter now. I need you just to do what you have done your whole life. You can reverse this. This fight is who you are. And she seems somewhat impressed by that for the moment, but the key moment that got me, is when she said, "Suffering, I am not suffering." "Well, I am, I retorted." And that my friends, is the point of Dasha Kiper's book. Who is the one who is suffering, and who is is the one who needs to let go. I have largely let go of this. Once in a while I am back on it, but its not my life and choice, even if she has Dementia. Its still her choice and his - my Dad's. My job is to make things easier for them. I guess I have answered that question. But my question still remains in the back of my mind. Should it matter, if the one thing you are fighting about could actually help the Dementia in the first place? Perhaps we will never know. But this is the world I am living in now, so we shall see how the story goes. Keep you all posted.
March 25, 2023
I would give this more stars as it was written for me, an Alzheimer's caregiver. Kiper has a collection of what I consider qualitative research combined with medical research on the brain and a touch of philosophy on how humans interact. It is truly written for those Alzheimer's caregivers needing a tribe of people to understand what they are going through as they interact with their loved ones. The only thing I was desperately reading it for that it didn't provide me were answers to how I am supposed to react. It isn't a how-to guide but rather an "I-see-your-struggles-and-they-are-real" guide. So, each night I settled in to read a chapter or two, I took comfort in the validation for something I had been feeling and the stories Kiper shared made me feel connected. I have already submitted my order for my own copy as I want to read it again and again...just to make me feel okay. Thank you, Dasha.
July 7, 2023
From the foreword by Norman Doidge: “The topic may be heavy, but the author writes with great sensitivity and a light touch.” This is very true. The author writes empathetically and provides insights into the nature of dementia disorders and how they change our relationships.
First in the preface, and then, throughout the book, Dasha Kiper acknowledges the effect on the caregiver of caring for someone with a dementia disorder. In the preface, she writes “that in long-standing relationships, acknowledging the humanity of someone with a dementia disorder complicates our feelings and makes it hard not to take their symptoms personally.” The caregiver must adapt again and again while traveling into unknown territory with their companion.
I learned that when we can’t remember something our brains find ways of making “compensatory strategies” to “offset memory loss.” The mind “gets to work, creating narratives to cover its tracks.”
Remembering an event is about reconstructing a scene from stored experiences. We are not so much remembering something as it occurred, rather our minds organize these experiences “based on some elements of what happened, on a general sense of what might have happened, and on our current beliefs and feelings.” The same event attended by a group of people may be recalled by each individual in a vastly different way.
It was interesting to note how “each person’s cognition is dependent on the cognitive faculties of those around them.” We tend to mirror what our companion is experiencing. Their impairment may become our impairment. “Not only do we expect people’s memories to work as ours do, we need to believe that memories are shared” to deepen our relationships with one another.
“Without the other person’s memory working alongside our own, collaborating with us on facts and events, we’re left shaky and unsure of what’s real, of what’s to be trusted and not trusted.” As caregivers, when our companion forgets and we can’t share our narrative with them, we can “end up feeling erased, [our] words, efforts, and sacrifices often going unacknowledged and even denied.”
Caregivers face the challenge of changing their automatic responses “to conscious responses,” or risk being continually triggered, leaving us in the mode of either always trying to fix the person, or feeling overwhelmed and like we will never be enough.
“Under duress, our brains become especially frugal and we fall back on old patterns of behavior, and the more we resort to these patterns, the deeper our neural grooves become and the harder it is to choose a different path.”
Capgras syndrome was hard to learn about. It’s “a psychiatric disorder that causes people to think their loved ones are imposters or have been replaced by identical doubles.” Their brain may recognize them visually, but the various components of the brain don’t work together to create a complete representative picture of the person, so they ‘feel’ that the person isn’t who they say they are. The person looks ‘right,’ but doesn’t feel ‘right.’
Dementia disorders may cause us to experience loss, and bring disorder to our lives, however the mind is truly creative and has defenses. “It continues to weave a meaningful narrative, even from events that threaten to diminish essential parts of our loved ones and ourselves.”
Another topic that interested me is the art of conversation. It was considered quite complex by most cognitive psychologists, as they were looking at it from the point of view of individuals. However, Simon Garrod and Martin J. Pickering state that “conversation is a collaborative activity, a co-construction, so to speak, with each person simulating the grammar, vocabulary, and tone of the other.” Each person motivates the other to keep the conversation moving forward and they may even borrow words from each other. Once started, it’s easy to continue. “Dementia or no dementia, engaging in conversation is a neural habit that is very hard to resist.”
Kiper ends by challenging us to “[strive] to understand a mind, to see it in context, to reckon with its contradictions, and simply to let that mind know it is worth knowing.”
First in the preface, and then, throughout the book, Dasha Kiper acknowledges the effect on the caregiver of caring for someone with a dementia disorder. In the preface, she writes “that in long-standing relationships, acknowledging the humanity of someone with a dementia disorder complicates our feelings and makes it hard not to take their symptoms personally.” The caregiver must adapt again and again while traveling into unknown territory with their companion.
I learned that when we can’t remember something our brains find ways of making “compensatory strategies” to “offset memory loss.” The mind “gets to work, creating narratives to cover its tracks.”
Remembering an event is about reconstructing a scene from stored experiences. We are not so much remembering something as it occurred, rather our minds organize these experiences “based on some elements of what happened, on a general sense of what might have happened, and on our current beliefs and feelings.” The same event attended by a group of people may be recalled by each individual in a vastly different way.
It was interesting to note how “each person’s cognition is dependent on the cognitive faculties of those around them.” We tend to mirror what our companion is experiencing. Their impairment may become our impairment. “Not only do we expect people’s memories to work as ours do, we need to believe that memories are shared” to deepen our relationships with one another.
“Without the other person’s memory working alongside our own, collaborating with us on facts and events, we’re left shaky and unsure of what’s real, of what’s to be trusted and not trusted.” As caregivers, when our companion forgets and we can’t share our narrative with them, we can “end up feeling erased, [our] words, efforts, and sacrifices often going unacknowledged and even denied.”
Caregivers face the challenge of changing their automatic responses “to conscious responses,” or risk being continually triggered, leaving us in the mode of either always trying to fix the person, or feeling overwhelmed and like we will never be enough.
“Under duress, our brains become especially frugal and we fall back on old patterns of behavior, and the more we resort to these patterns, the deeper our neural grooves become and the harder it is to choose a different path.”
Capgras syndrome was hard to learn about. It’s “a psychiatric disorder that causes people to think their loved ones are imposters or have been replaced by identical doubles.” Their brain may recognize them visually, but the various components of the brain don’t work together to create a complete representative picture of the person, so they ‘feel’ that the person isn’t who they say they are. The person looks ‘right,’ but doesn’t feel ‘right.’
Dementia disorders may cause us to experience loss, and bring disorder to our lives, however the mind is truly creative and has defenses. “It continues to weave a meaningful narrative, even from events that threaten to diminish essential parts of our loved ones and ourselves.”
Another topic that interested me is the art of conversation. It was considered quite complex by most cognitive psychologists, as they were looking at it from the point of view of individuals. However, Simon Garrod and Martin J. Pickering state that “conversation is a collaborative activity, a co-construction, so to speak, with each person simulating the grammar, vocabulary, and tone of the other.” Each person motivates the other to keep the conversation moving forward and they may even borrow words from each other. Once started, it’s easy to continue. “Dementia or no dementia, engaging in conversation is a neural habit that is very hard to resist.”
Kiper ends by challenging us to “[strive] to understand a mind, to see it in context, to reckon with its contradictions, and simply to let that mind know it is worth knowing.”
March 29, 2023
This book is really for caregivers, and it speaks directly to what has flummoxed me over the last year, which is just how hard it is to resist trying to reason with someone who has a fixed, strongly held delusion and is well beyond reason. I have asked myself over and over why I continue to engage my wife at those times when it is futile. The author, who began her understanding of caregiving years ago when she was the live-in caregiver for 18 months for a 98-year-old man with Alzheimer disease, answers my question on many levels, with rich clinical stories from the support groups and trainings that she has held for caregivers for years.
What the author has written is groundbreaking in her insights into the dilemma that caregivers face. I feel as if she is not only reading my mail, but translating for me the portions that are in a foreign language. Reading the book makes me feel seen and appreciated, the very gifts that my wife gave me in abundance and which are slipping away.
The author writes “… people with dementia can still find your most vulnerable part and poke at it until you feel yourself unraveled.”
And “… we must learn to understand not only the man who mistakes his wife for a hat but also the wife who must adapt to a husband who mistakes her for a hat.”
And “… the healthy brain’s ingrained biases and proclivities make it in unequipped in many ways to deal with the cognitively impaired brain.”
The dynamic between caregiver and beloved, now afflicted, spouse is at times crazy-making. I am deeply grateful to Ms. Kiper for her investment in making a bewildering and enervating path just a bit easier.
What the author has written is groundbreaking in her insights into the dilemma that caregivers face. I feel as if she is not only reading my mail, but translating for me the portions that are in a foreign language. Reading the book makes me feel seen and appreciated, the very gifts that my wife gave me in abundance and which are slipping away.
The author writes “… people with dementia can still find your most vulnerable part and poke at it until you feel yourself unraveled.”
And “… we must learn to understand not only the man who mistakes his wife for a hat but also the wife who must adapt to a husband who mistakes her for a hat.”
And “… the healthy brain’s ingrained biases and proclivities make it in unequipped in many ways to deal with the cognitively impaired brain.”
The dynamic between caregiver and beloved, now afflicted, spouse is at times crazy-making. I am deeply grateful to Ms. Kiper for her investment in making a bewildering and enervating path just a bit easier.
October 11, 2023
3.75/5 ⭐
Niesamowita, poruszająca, a zarazem pouczająca. Powinno być o niej głośniej
Niesamowita, poruszająca, a zarazem pouczająca. Powinno być o niej głośniej
April 11, 2023
First of all, I am an 86 year old caregiver for an 88 year old husband of 67 years. He is in cognitive decline and his mobility is extremely difficult. This book was a godsend for me. Each case Ms Kiper presented revealed difficulties I have been experiencing for at least the last five years although none of those cases were exactly like mine. I have tried to date the hiding time of the decline and think after reading the book that it may have been as many as ten years with reality rushing in during the last four or five. Ms Kiper brings her clients, the caregivers, to life and deals with the patients with compassion. This book greatly helped to sort out feelings of guilt, anger, confusion, desperation and just plain grief. I gave it a four as I sometimes really struggled with the psychological explanations of the brain but in retrospect realize that they were vital to seeing how the brain and the person I love so dearly is dying. Some of this book is hard reading for a lay person but it is a must read for caregivers and members of their family. It will be a benefit to the patient as it may help to keep us from devaluing the person who we see disappearing. For the caregiver it may well mean a kind of salvation.
March 29, 2023
Although this could be read as an easy-read academic treatise, there are after all 31 pages of notes, it is really a book for carers of those with dementia.
I really wish I had been able to read this book as soon as my wife started in the early stages of dementia and then I would have been able to understand and perhaps, amend my behaviour. Maybe not the latter from what Dasha Kiper says, but at least I would have understood why I was doing what I did.
I really recommend this book to anybody who is caring for a friend or rfelative with dementia.
I really wish I had been able to read this book as soon as my wife started in the early stages of dementia and then I would have been able to understand and perhaps, amend my behaviour. Maybe not the latter from what Dasha Kiper says, but at least I would have understood why I was doing what I did.
I really recommend this book to anybody who is caring for a friend or rfelative with dementia.
November 16, 2025
Cuando un ensayo científico se sale de lo científico suele ocurrir que visita la biográfico para hacer banco de niebla sobre un argumentario falible.
Dasha Kiper no solo rompe con el tópico sino que a la manera del mejor Oliver Sacks, hace de la literatura científica un catálogo de experiencias humanas de primera categoría. Y sus descripciones de situación en torno a la relación familiar/terapeuta/enfermo de Alzheimer, son híbridos de profundas referencias de neuropsicología e historias de vida al límite de lo emocional, para no caer en el pastiche melodramático.
Indispensable para cuidadores y sus familias, para nosotros que cuidaremos o seremos cuidados y finalmente para quien disfrute de la ciencia al servicio de la verdad y de las personas. tan cálida y sencillamente escrita como castañas de otoño en un cucurucho cualquiera.
Dasha Kiper no solo rompe con el tópico sino que a la manera del mejor Oliver Sacks, hace de la literatura científica un catálogo de experiencias humanas de primera categoría. Y sus descripciones de situación en torno a la relación familiar/terapeuta/enfermo de Alzheimer, son híbridos de profundas referencias de neuropsicología e historias de vida al límite de lo emocional, para no caer en el pastiche melodramático.
Indispensable para cuidadores y sus familias, para nosotros que cuidaremos o seremos cuidados y finalmente para quien disfrute de la ciencia al servicio de la verdad y de las personas. tan cálida y sencillamente escrita como castañas de otoño en un cucurucho cualquiera.
March 20, 2023
It was helpful to me in explaining thoughts/ideas on how the brain works. The focus on caregiver and actual stories made me feel I was not alone. So many factors effect the ability to interact. I wished there were strategies to help navigate this awful disease but it is so complex and every situation is different. I think it is worth a read if you are a caregiver.
June 20, 2024
Full of compassion, information, and beauty. A great book for anyone who is a caretaker. Lots of permission for yourself and for your loved ones in here, and stories that offer lots of different perspectives.
June 9, 2024
Hace 4 días mi abuelo tropezó en el baño. Lleva un año en el que ha ido perdiendo la movilidad al punto de tener pánico a levantarse de la cama (por si se vuelve a caer).
Hace 4 días la ambulancia se lo llevó para ingresarle. Entre ese caos y miedo (al que uno se acostumbra cuando anticipa que las personas se van), mi abuela vio la oportunidad de intentar escapar (otra vez) de casa. Tenía una cita con el obispo porque este no quería que se casara con mi abuelo. Ni que tuvieran hijos juntos.
Mi abuela se siente engañada. Ella no se casó nunca. Ella no se quedó embarazada. Ella es más joven que mi madre. Ella está esperando a que vuelva su padre y la saque de la casa donde (a veces) se siente secuestrada (por nosotros).
Mi madre fue a visitarla. Comieron juntas. Vieron fotos juntas. De cuando se casó. De cuando estaba embarazada. De cuando nació mi madre. De cuando nací yo. De cuando mi madre se quedó sola. De cuando veraneábamos juntos.
Mi abuela volvió a tener una familia.
Mi madre me llamó desde el coche llorando.
Mi abuelo, ya en casa, me dijo por teléfono que cuándo se le pasará esta mala racha. Pregunta con la que casi se empieza este libro.
Hace 4 días la ambulancia se lo llevó para ingresarle. Entre ese caos y miedo (al que uno se acostumbra cuando anticipa que las personas se van), mi abuela vio la oportunidad de intentar escapar (otra vez) de casa. Tenía una cita con el obispo porque este no quería que se casara con mi abuelo. Ni que tuvieran hijos juntos.
Mi abuela se siente engañada. Ella no se casó nunca. Ella no se quedó embarazada. Ella es más joven que mi madre. Ella está esperando a que vuelva su padre y la saque de la casa donde (a veces) se siente secuestrada (por nosotros).
Mi madre fue a visitarla. Comieron juntas. Vieron fotos juntas. De cuando se casó. De cuando estaba embarazada. De cuando nació mi madre. De cuando nací yo. De cuando mi madre se quedó sola. De cuando veraneábamos juntos.
Mi abuela volvió a tener una familia.
Mi madre me llamó desde el coche llorando.
Mi abuelo, ya en casa, me dijo por teléfono que cuándo se le pasará esta mala racha. Pregunta con la que casi se empieza este libro.
April 20, 2023
My mother suffered from memory loss and dementia in the last decade of her life. Though there were many moments of joy during those years, it was also incredibly painful on both sides. My brilliant, witty, mensch-of-a-mom slowly receding. The notion that the tendency to deny how far the disease had progressed, to try to argue her back to reality, is based on biological imperatives in my own brain would've been a balm then, and is now. It was undoubtedly easier for me than my brother and his wife, who cared for mom in our childhood home.
This book also raised lots of questions for me, like how this dynamic plays out in dementia care facilities. Does the difference in the emotional tie lessen the instinct to deny disease progression, to try to argue the patient back to reality? Does the stage of illness matter (thinking care facility patients likely skew toward more profound disease burden)? Does an institutional lack of understanding of this dynamic help fuel staff burnout and turnover? Is that a place we can focus to make care facilities a little better, for workers and patients?
Last, the book made me want to give a shout-out to all the caregivers, both family and professional, and a call-out to the whole community to support them. It’s heartbreaking work.
This book also raised lots of questions for me, like how this dynamic plays out in dementia care facilities. Does the difference in the emotional tie lessen the instinct to deny disease progression, to try to argue the patient back to reality? Does the stage of illness matter (thinking care facility patients likely skew toward more profound disease burden)? Does an institutional lack of understanding of this dynamic help fuel staff burnout and turnover? Is that a place we can focus to make care facilities a little better, for workers and patients?
Last, the book made me want to give a shout-out to all the caregivers, both family and professional, and a call-out to the whole community to support them. It’s heartbreaking work.
January 6, 2024
Although it has been over 10 years since my dad died, in some ways, I'm still a recovering dementia caregiver. There is much insight here about the dance between the diseased brain and the healthy brain. Highly recommended.
December 7, 2025
Very, very interesting look at the psychology and neurophysiology of the relationship between dementia patients and their caregivers. By examining the breakdown in communication between a healthy brain and a sick brain, I feel like I actually ended up learning a lot about how social connection and understanding are supposed to work. It’s not what I expected when I picked this up, but I was fascinated the entire time.
April 2, 2023
The author provides great insight into this horrible disease and how the patients’ caregivers deal with it — herself included, as she once was a caregiver. She explains how human brains work and why we all respond a certain way even when presented with the facts.
November 10, 2023
In the style of The Man Who Mistook His Wife, but about how there are no perfect caregivers when it comes to dementia.
April 27, 2024
Good book for people caring for their loved ones with dementia. Wish I had read it sooner.
May 26, 2023
A good psych-major book; it's been awhile! Focusing on caregiver experience, psychologically, was a new perspective and is well done. Some interesting things/notes below.
Ch.9 - Human beings are ultra-social animals who require other people to see the world as they do. This need for a shared reality not only creates a connection to others, but also validates feelings, judgements, and sense of self. Without such validation, we become both physically agitated and cognitively uncertain about what we know and who we are. Moreover, this need for a mutually agreed upon reality is so strong, that we naturally overestimate the degree to which others, especially loved ones, share our thoughts and perceptions. So when a spouse or parent suddenly sees the world very differently from us, we might intellectually register this as a symptom (of their dementia), but unconsciously feel that an implicit social promise has been broken.
Ch. 10 - Social pain is the same as physical pain...Our biological makeup is so intent on maintaining social connections that the source of rejection is less important than we might imagine. Biology is interested not in nuanced thinking but in survival. Perhaps this is why humans, along with other mammals, have evolved to feel isolation as painful. Rejection literally hurts. Physical pain and emotional pain might feel different, but they derive from a common neurobiological source. The same DACC that registers feelings of exclusion also registers physical pain. If social pain and physical pain are not so distinct in the brain, then perhaps Tylenol can help mend a broken heart....People who take painkillers instead of placebos over the course of a few weeks experience significantly less pain from rejection and isolation (both reported and measured via DACC brain scans)....Social pain is clearly an evolutionary tool, an adaptive signal that urges us to keep close, the better to improve our chances of survival. Just as physical pain alerts us to something that may be harmful, social pain alerts us to the danger of isolation.
Ch. 11 - Emotions necessarily factor into how we think. Without preferences and feelings, our mind would have to sift through numerous options, one seeming no better than the other. In E's case, the neural connection between cognition and emotion had somehow been severed. E could reason, but his decisions had no real life application...E's inability to respond emotionally to an experience left him unable to assign value to it. He couldn't finish or commit to anything because no one task or person was more important than another. Application: What is paramount to (the dementia patient) is less the truth than the feeling. Her family member had to learn to address the emotions beneath the patient's accusations. J had to learn to "speak Alzheimer's", which clinically means focusing on the patient's feelings rather than on the facts, which change from moment to moment.
Ch.15 - The biases and tendencies that make us fallible are also what make the mind a marvel. The intuitions that make it so hard to see and accept the disease are the same intuitions that allow us to feel connected to the person whose mind is irreparably changing. The intuitions that make us blame vulnerable patients also help us feel a deep moral accountability to them. And the intuitions that make it hard to let go of our hurt and anger also make it hard to let go of a patient's humanity.
Ch.9 - Human beings are ultra-social animals who require other people to see the world as they do. This need for a shared reality not only creates a connection to others, but also validates feelings, judgements, and sense of self. Without such validation, we become both physically agitated and cognitively uncertain about what we know and who we are. Moreover, this need for a mutually agreed upon reality is so strong, that we naturally overestimate the degree to which others, especially loved ones, share our thoughts and perceptions. So when a spouse or parent suddenly sees the world very differently from us, we might intellectually register this as a symptom (of their dementia), but unconsciously feel that an implicit social promise has been broken.
Ch. 10 - Social pain is the same as physical pain...Our biological makeup is so intent on maintaining social connections that the source of rejection is less important than we might imagine. Biology is interested not in nuanced thinking but in survival. Perhaps this is why humans, along with other mammals, have evolved to feel isolation as painful. Rejection literally hurts. Physical pain and emotional pain might feel different, but they derive from a common neurobiological source. The same DACC that registers feelings of exclusion also registers physical pain. If social pain and physical pain are not so distinct in the brain, then perhaps Tylenol can help mend a broken heart....People who take painkillers instead of placebos over the course of a few weeks experience significantly less pain from rejection and isolation (both reported and measured via DACC brain scans)....Social pain is clearly an evolutionary tool, an adaptive signal that urges us to keep close, the better to improve our chances of survival. Just as physical pain alerts us to something that may be harmful, social pain alerts us to the danger of isolation.
Ch. 11 - Emotions necessarily factor into how we think. Without preferences and feelings, our mind would have to sift through numerous options, one seeming no better than the other. In E's case, the neural connection between cognition and emotion had somehow been severed. E could reason, but his decisions had no real life application...E's inability to respond emotionally to an experience left him unable to assign value to it. He couldn't finish or commit to anything because no one task or person was more important than another. Application: What is paramount to (the dementia patient) is less the truth than the feeling. Her family member had to learn to address the emotions beneath the patient's accusations. J had to learn to "speak Alzheimer's", which clinically means focusing on the patient's feelings rather than on the facts, which change from moment to moment.
Ch.15 - The biases and tendencies that make us fallible are also what make the mind a marvel. The intuitions that make it so hard to see and accept the disease are the same intuitions that allow us to feel connected to the person whose mind is irreparably changing. The intuitions that make us blame vulnerable patients also help us feel a deep moral accountability to them. And the intuitions that make it hard to let go of our hurt and anger also make it hard to let go of a patient's humanity.
April 4, 2024
Ensayo sobre demencias y Alzheimer para leer con calma, ya que requiere un buen procesamiento de la información. Contiene mucha carga de neurociencia, por lo que, si no te motiva el tema en lo personal o en lo profesional, puede resultar denso y complejo. Aunque también es revelador e interesante. Y liberador, en parte
Me ha gustado el enfoque, nuevo hasta ahora, centrado en explicar a qué se enfrenta el cerebro de la persona cuidadora, a qué se deben sus comportamientos y emociones a lo largo del duro proceso del cuidado de su familiar.
La autora se apoya en estudios recientes y en infinidad de libros, pero mayoritariamente habla desde la experiencia de tratar el tema en primera persona a diario, supervisando a profesionales de la salud mental y dirigiendo grupos de apoyo de personas cuidadoras y familiares
**"(...) es una enfermedad terrible y no se la desearía a nadie. Pero he aprendido mucho acerca de mí misma. Tengo más paciencia de la que creía. No lo esperaba, pero he descubierto que todavía hay amor, y el amor no desaparece. El Alzheimer no puede arrebatármelo, y por eso estoy agradecida"**
Me ha gustado el enfoque, nuevo hasta ahora, centrado en explicar a qué se enfrenta el cerebro de la persona cuidadora, a qué se deben sus comportamientos y emociones a lo largo del duro proceso del cuidado de su familiar.
La autora se apoya en estudios recientes y en infinidad de libros, pero mayoritariamente habla desde la experiencia de tratar el tema en primera persona a diario, supervisando a profesionales de la salud mental y dirigiendo grupos de apoyo de personas cuidadoras y familiares
**"(...) es una enfermedad terrible y no se la desearía a nadie. Pero he aprendido mucho acerca de mí misma. Tengo más paciencia de la que creía. No lo esperaba, pero he descubierto que todavía hay amor, y el amor no desaparece. El Alzheimer no puede arrebatármelo, y por eso estoy agradecida"**
July 13, 2025
A deeply personal read ❤️ This book was helpful in understanding some of the neurological and cognitive psychological drivers behind the emotional & moral complexities that dementia caregivers face. The combination of caregiver stories + literary references + scientific studies is unique compared to other dementia reads. Kiper makes me think differently about my own behaviors / reactions and those of my family, both normalizing them and assuaging some guilt associated with them. The book’s format reminded me a bit of Lori Gottlieb’s Maybe You Should Talk to Someone but much heavier on the science; if anything, I wished for more of the patient/caregiver anecdotes here.
June 16, 2024
Nie mając doświadczenia w opiece nad osobą z altzhaimerem najbardziej ujęła mnie ciężka dola opiekuna. I tu intuicyjnie się zgadzam z autorką, że taka opieka musi być bardzo ciężka i wykańczająca. A co najgorsze jest w przypadku czegokolwiek negatywnego chory wgl nie pamięta tego, a opiekun niestety tak i nie może się tak łatwo odciąć. Natomiast schematy w które wpadają tacy opiekunowie są bardzo ciekawe ale i logiczne. Niektóre mechanizmy przedstawione w kontekście demencji sa w mojej opinii uniwersalne. Bardzo dobrze wyważone opowiadanie konkretnych historii ludzi z uzasadnieniem zachowań, wyjaśnieniem pojęć z aspektami biologicznymi czy psychologicznymi.
November 17, 2024
Interesante pero repetitivo. Es un ensayo cuasi clínico sobre cómo funciona nuestro cerebro, especialmente enfocado en la figura del cuidador de personas con demencia, Alzheimer, y otras enfermedades mentalmente degenerativas.
Al final la conclusión la resumo en esta frase del libro: “Y si algo he aprendido, es que las evidencias, por obvias o lógicas que resulten, no suelen cambiar los sentimientos de las personas, al menos no por mucho tiempo, y, desde luego, no antes de que estén preparadas para ese cambio.”
Al final la conclusión la resumo en esta frase del libro: “Y si algo he aprendido, es que las evidencias, por obvias o lógicas que resulten, no suelen cambiar los sentimientos de las personas, al menos no por mucho tiempo, y, desde luego, no antes de que estén preparadas para ese cambio.”
April 6, 2023
A beautiful tribute to caregivers of people with dementia and their struggles, as well as an open and honest assessment of why caregivers still struggle with the 'self' the dementia patient presents. Lots of stories from Kiper's history with caregiver support groups that will reinforce that no caregiver is alone in this struggle. I immediately ordered a copy for a caregiver I know who doesn't have the luxury of a support group.
December 14, 2023
The first half of this book was deeply insightful and relatable for caregivers.
November 16, 2025
This is my fourth book on dementia and it certainly is unlike the others. While the first three give basic explanations of the problems AND recommend how to deal with them, this book shows that those recommendations may not be possible to follow with success. And it IS all about discussing how and why caregivers might have unsolvable problems with care. That’s right; I expected Dasha Kiper to give advice but she doesn’t do it, probably because there is none to give. Yet learning what the patient is thinking/feeling/emoting and likewise what is going on in the caregiver, isn’t that awareness at least a partial remedy?
March 21, 2024
This book was recommended by my father who has been providing caregiving to my elderly grandmother who has experienced memory loss. He described this book as very helpful in understanding his experience as a caregiver and helping ground himself in light of the emotional exhaustion that can arise in caregiving someone with dementia.
As a clinical psychologist, I was curious to read it not only given changes with my grandmother’s cognitive capacity but also as I work with clients who provide caregiving to family members with dementia. This book was a fascinating read with the interplay of patient/caregiver stories, philosophical considerations, and brain science. While some of the topics can be quite complex, the author’s style of writing was very approachable. This is a book I’ll keep on my shelf and recommend to clients as they navigate these “unimaginable lands.”
As a clinical psychologist, I was curious to read it not only given changes with my grandmother’s cognitive capacity but also as I work with clients who provide caregiving to family members with dementia. This book was a fascinating read with the interplay of patient/caregiver stories, philosophical considerations, and brain science. While some of the topics can be quite complex, the author’s style of writing was very approachable. This is a book I’ll keep on my shelf and recommend to clients as they navigate these “unimaginable lands.”
August 28, 2023
Endless gratitude to Dasha Kiper for writing this compassionate, cathartic book about people who give care to those with Alzheimer's disease. Her "case study" profiles will go right to your heart if you live with Alzheimer's in your life, and I imagine they would also serve to educate those who do not but are genuinely curious to know more about this heartbreaking and lethal disease. One of our loyal regulars at the bookstore put it on my radar and urged me to read it. I am grateful she did.
I'd also like to say that this book provides an excellent model for writers of nonfiction wishing to honor the dignity of their subjects and engage readers in the kindest ways. A book of profound value and worth.
I'd also like to say that this book provides an excellent model for writers of nonfiction wishing to honor the dignity of their subjects and engage readers in the kindest ways. A book of profound value and worth.
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