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Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain

A new book examines the complex relationship between the mind of someone with dementia and the mind of the person caring for them

Norman Doidge
May 19, 2023
Alain Jocard/AFP via Getty Images
A caregiver speaks with an elderly resident—one of three Alzheimer’s sufferers in the establishment—in a house at L’Hay-les-Roses on the outskirts of Paris that is run as an alternative to the traditional home-care modelAlain Jocard/AFP via Getty Images
Alain Jocard/AFP via Getty Images
A caregiver speaks with an elderly resident—one of three Alzheimer’s sufferers in the establishment—in a house at L’Hay-les-Roses on the outskirts of Paris that is run as an alternative to the traditional home-care modelAlain Jocard/AFP via Getty Images

Travelers to Unimaginable Lands is that rarity: true biblio-therapy. Lucid, mature, wise, with hardly a wasted word, it not only deepens our understanding of what transpires as we care for a loved one with Alzheimer’s, it also has the potential to be powerfully therapeutic, offering the kind of support and reorientation so essential to the millions of people struggling with the long, often agonizing leave-taking of loved ones stricken with the dreaded disease. The book is based on a profound insight: the concept of “dementia blindness,” which identifies a singular problem of caring for people with dementia disorders—one that has generally escaped notice but, once understood, may make a significant difference for many caregivers.

Elegantly written and accessible, Travelers is full of frank, lively, and illuminating conversations between the author, Dasha Kiper, and caregivers, which explore the ways caregivers get stuck in patterns hard to escape. These conversations—each of which come from actual clinical encounters—are buttressed by the relevant brain science and interspersed with apt observations drawn from great literature (Borges, Kafka, Chekhov, Melville, Sartre, Beckett) that illuminate the conundrums the disease presents. The topic may be heavy, but the author writes with great sensitivity and a light touch.

Travelers is sorely needed, for several reasons. As of this moment, none of the mainstream drugs for dementia disorders does much to reverse cognitive decline, except to offer a few months of lessening symptoms. When it comes to the treatment of people with Alzheimer’s, all the promissory notes of medical science, and the monthly hype about a single magic bullet that will cure this disease, clash with real-world medicine. Indeed, it is becoming increasingly clear that the amyloid hypothesis upon which so many of these claims have been based—the idea that Alzheimer’s is caused by nothing but the buildup of plaque in the brain—is woefully inadequate to explain the disease.

In the meantime, it is up to family members and friends, where possible, to take care of their loved ones for much of the duration of their cognitive and physical decline. And yet there has been far too little clinical attention paid to the caregivers themselves. How can we help them through a process that is profoundly difficult, if not traumatic? Remember, alongside the rigors of providing day-to-day care, the caregivers often suffer from what might best be called “anticipatory grief,” as familiar aspects of their loved ones slip away. And this may be compounded by a fear, in family members, that they might inherit the disease unfolding in front of them.

Kiper’s core insight concerns a counterintuitive dynamic that often occurs between patients and caregivers—a dynamic that has eluded so many, probably because it requires the right person immersing herself in a situation most people wish to avoid. Kiper herself is one of a small cadre who have made it their vocation to help care for the caregivers. She is also a writer with the keenest of minds, combining therapeutic tact and brutal honesty, not only about the process of caregiving but also about her own errors, from which she steadily learns.

Alzheimer’s has different presentations and takes a different course in each patient, depending, in part, on where the process begins in the brain. That said, it’s often noted that Alzheimer’s interferes with short-term memory, leads to other deficits, includes a lot of denial, and, ultimately, leads many victims to gradually “lose their minds.”

The genius of this book is to show more precisely the process of resisting such losses as it unfolds between patient and caregiver, affecting not just one but both. To learn about this process is surprisingly helpful—not curative, but helpful.

There has been far too little clinical attention paid to the caregivers themselves.

Travelers to Unimaginable Lands clarifies why we, the caregivers, often behave like Sisyphus of the Greek myth, doomed eternally to roll a boulder up a hill, only to watch it roll down again. In similar fashion, we find ourselves repeating the same errors, making the same requests, and getting pulled into the same power struggles, pointless quarrels, and seething ambivalences as we care for our patients. This is partly because Alzheimer’s patients seem unable to learn from their mistakes. But it is also because, weirdly enough, caregivers experience the same problem. In an uncanny mirroring, we get pulled into a parallel process with our charges, forgetting what happened yesterday, repeating what didn’t work last time, becoming ever more prone to agitation and impatience, even as we’re engaged in a trial of devotion that pushes love to its limit.

Why does this happen? Precisely because, as Kiper shows, the healthy brain has evolved to automatically attribute to other people the existence of a self that is sustained over time, has self-reflective capacities, and is capable of learning and absorbing new information. This attribution is the brain’s unconscious default position, or cognitive-emotional bias, and does not simply disappear when we become caregivers for people whose own brains begin to falter. It is the invisible projection upon which each human encounter begins, a projection that is implicit in our every conversation and even in the structure of human language itself.

When we say “you,” we believe we’re talking to another “self,” an essence, or perhaps process, that somehow persists over time. But this self—and the continuity it implies— depends on having the memory capacity to knit together our different mental states. This same capacity contributes to the ability to self-reflect, which is a key component of human consciousness. Alzheimer’s and related dementia disorders silently strip their victims of the cognitive infrastructure that helps construct this self.

The “loss of self” described in the Alzheimer’s literature can happen slowly—over a decade in some cases—and may be stealthy enough that neither the victim (and this is the key point) nor the caregiver appreciates its full extent. Alzhei­mer’s notwithstanding, the person remains in front of us, in their usual form and appearance, exhibiting the same expres­sions, carrying the same music in their voices, evoking in us thousands of familiar memories and emotional associations. There are better and worse days, and sometimes the old self seems to return, with strong will intact—a viable simulacrum of who they once were. Clearly, there is a person there.

Yet as the disease advances, we may come to see just the shell or the husk of the self we once knew. But this new understanding does not stop us from projecting a continu­ous self, because, as Kiper explains, it is the brain’s default position—that is, we cannot help but see what was once there. This brilliant insight is the entry point into the hitherto difficult-to-imagine land she goes on to describe.

We often say of people caught in this bind—knowing the loved one’s self is diminished but continuing to see it as whole—that they are “in denial,” as if this was only a defense mechanism at work. But that is a misapplication of the valuable term “denial.” Yes, there can be denial, and Kiper describes some of it. But those caught in the Sisyphean entanglement are not simply denying that their loved ones are ill—after all, they’re the ones accepting infirmity and trying to help. Though it may accompany denial or even reinforce it, dementia blindness isn’t simply the defense mechanism of a stressed mind; it is, as Kiper shows, a product of how the healthy mind normally works. This is one reason why the discovery of the concept has been so elusive, and why this book is so helpful.

We cannot help but see what was once there.

Until now, we have been forced to cobble together our picture of what it is like to have Alzheimer’s subjectively. We have had no perfect guide. After all, there has never been a case of someone reversing the process in its very advanced stage (after the self has been radically diminished) and returning to share what it was like and how best to relate to people in extremis. So there has always been something imprecise and necessarily provisional when we use such haunting phrases as “loss of self.” At the same time, there has also been a tendency to not take seriously enough what might be the second-best form of guidance: the firsthand observations of professional caregivers. This is because they are all too often relegated to the lower rungs of the healthcare hierarchy by a medical system, and a zeitgeist, that often only looks up to and listens to those who promise “cures,” thinking nothing less will do.

Dasha Kiper is a perceptive observer who stays close to her material. But as sometimes happens when an observer is meticulous in describing a particular experience, a more general insight can emerge. Although Kiper makes no such claims, it is entirely possible that her approach, which shows how the cognitive biases of both the patient and the caregiver interlock, may be of assistance in thinking about other kinds of brain-based problems that affect aspects of the self and its continuity over time.

To take one example: schizophrenia. When it was first diagnosed in 1883, it was called “dementia praecox,” because doctors believed that a patient’s brain was prematurely deteriorating. When most of us think of schizophrenia, however, we tend to associate the illness with its more prominent symptoms, like hallucinations and delusions. But, in fact, there are often other less prominent or “noisy” symptoms, like cognitive decline; hence the original name. As with dementia disorders, such changes to the infrastructure of the self may not be detected by the patient themselves or seen clearly by the caregiver.

People caring for those afflicted with schizophrenia may have trouble seeing the extent to which the disease has altered their loved ones. Again, this is usually written off as denial. But while denial may be operative, we have to wonder, given Kiper’s insights, if this particular blind spot is not also a product of the workings of the caregiver’s mind projecting onto their loved one, by default, the same experience of self they had before the onset of the illness. This is not to say schizophrenia is the same as Alzheimer’s. Of course it’s not, and, thankfully it has a better prognosis and better treatment. But Kiper’s insight into the causes of dementia blindness may be relevant, in modified form, to this and other neurological and psychiatric conditions.

For practical purposes, an awareness of dementia blindness may help caregivers bypass some cognitive roadblocks, allowing them to better empathize with the person suffering from the disease and even disengage from unproductive entanglements.

I have used the word “person” here, as distinguished from “self,” because, as I read it, the thrust of this book is to be respectful of the dignity of the person. Far from using the insight into loss of self as a way to dehumanize the patient, Travelers to Unimaginable Lands aspires to a more humane approach to the patient’s cognitive state, in which the diminishment of self may be disguised by the caregiver’s own biases and intuitions.

If I seem to be struggling with what term (“person,” “self,” “patient”) best describes people with serious cognitive decline, it’s because Kiper’s work opens up new territory for which we don’t yet have proper vocabulary or concepts—be they psychological, neurological, legal, or colloquial—that can help us to think about people who progressively evince a lack of continuity of self. No doubt, this absence of vocabulary has made it hard to think through the implications of dementia blindness in society at large. But, in the meantime, more important than finding the right word is finding the right guide, a person willing and able to take us into (if not completely through) this often unimaginable land—someone who knows its strangeness and its pitfalls.

A wise old medical adage, apt for real-world medicine, is this: “To cure sometimes, to relieve often, to comfort always.” I believe this book may well relieve and comfort, by clarifying the caregiver-patient relationship for many a tormented, confused, guilt-laden, self-attacking caregiver. Alzheimer’s, like any other kind of serious disease, reminds us of our own mortality, while also stirring up many unresolved issues with the person we are caring for. Kiper’s psychologically astute observations deepen our understanding of why so many difficult encounters occur between caregiver and patient, why they cause us pain, and what might beneficially be gleaned from them.

Which brings me to one last counterintuitive point. The experience of reading Dasha Kiper’s book may not be quite what one expects. Perusing its pages is not only grounding and often touching, it is sometimes even uplifting, as we meet people facing head-on something that looms large for so many of us. Kiper lets us accompany caregivers as they struggle to accept, acknowledge, cope with, and ultimately survive the loss of someone they love. Filled with insights and clinical jewels from start to finish, this book has much to teach us about the brain, our emotions, and the self. It is a treasure.

Excerpted from Travelers to Unimaginable Lands by Dasha Kiper. Forward copyright Norman Doidge, 2023. Reprinted with permission of the publisher and author.

Norman Doidge, a contributing writer for Tablet, is a psychiatrist, psychoanalyst, and author of The Brain That Changes Itself and The Brain’s Way of Healing.