Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain by Dasha Kiper; Random House, 272 pp., $28
In 2010, when she was 25 years old, Dasha Kiper abandoned her pursuit of a PhD in clinical psychology to move in with a man she calls Mr. Kessler, a 98-year-old Holocaust survivor who was succumbing to Alzheimer’s. Kiper did this, she writes, not only because she felt alienated by academia, but because she was inspired by the work of the physician-writer Oliver Sacks. Her new book, Travelers to Unimaginable Lands, is an homage to Sacks, one that self-consciously emulates his blending of clinical case study with medical and literary-philosophical meditations in an attempt to explain why the human brain is so ill-equipped to care for patients with dementia.
Kiper doesn’t have the vast storehouse of clinical experience that Sacks did (few do), but she evinces a capaciousness of sympathy and understanding for Alzheimer’s patients and (especially) their caregivers that infuses her portrayals of their struggles with Sacksian humanity. She found caring for Mr. Kessler to be fascinating, rewarding—and maddening. The experience launched her into a career of providing psychological support and training to people caring for Alzheimer’s patients. This book contains her accumulated wisdom from more than a decade in that work.
The scale of the Alzheimer’s crisis makes Kiper’s book urgent. Some 55 million people worldwide are afflicted with a dementia disorder, and more than six million Americans have Alzheimer’s, a number that will grow rapidly as the baby boomers age and as medical advances reduce the mortality burden of other diseases. The economic and psychological costs of the growing wave of dementia will be enormous. Despite decades of research, and billions of dollars on drug development, no cure or even any proven treatment for Alzheimer’s yet exists. Even the basic models of the disease’s etiology that have prevailed for years—for instance, that it is caused by the buildup of “amyloid plaque” in the brain—are now being called into question.
Kiper’s focus is on what dementia does to the patient’s behavior and sense of self—and on the psychological torments that those changes, in turn, unleash on caregiving family members. Evolution has left the properly functioning human brain poorly equipped to understand or interact with someone who lacks a short-term memory or a continuous sense of self. The default position of the human mind is to see coherent and continuous selves in other minds—even when such a self is no longer there. This helps produce what Kiper calls “dementia blindness”: the inability to accept, or even to perceive, that a loved one has descended into dementia, despite clear evidence of it. The Alzheimer’s patient and the caregiver unwittingly “collaborate” to perpetuate the illusion that dementia has not set in, or that it has not become severe.
People with Alzheimer’s do not readily yield their sense of self-awareness or desire for control, even when the hippocampus has shrunk and the ability to form new memories has faded; they will instinctively try to cover up their cognitive deficits and memory failures, cruising on a kind of inertial autopilot in which their old personality traits can mask the inner crumbling of sense or coherence. And because moments of true lucidity can at times still flicker back on, Kiper writes, a caregiver can easily get “pulled into a patient’s illusion of self-awareness.”
Kiper identifies a number of specific mental phenomena that contribute to dementia blindness, and that deepen the pain of dealing with Alzheimer’s patients. Prominent among them is the social nature of memory and cognition. “When one person’s memory is impaired, those close to him or her also become disoriented,” she writes; caregivers will sometimes unconsciously start to mimic the behavior of their patients. Research on the medial prefrontal cortex suggests that brains infect one another with their perceptions—a problematic phenomenon when one of the brains in a relationship has become untethered from reality. If you are a caregiver, life can feel like a horror-show funhouse, full of distorting mirrors that make it hard to determine where your loved ones end and their illnesses begin. You may feel your own grip on reality slipping.
Worse, aspects of a patient’s personality can actually become more pronounced in dementia, even as others fade. When those attributes are negative, that can exacerbate the unhappy dynamics that often inflect familial relationships. Those personality quirks of your spouse or parent that have always driven you crazy can get magnified when the self of that person meaningfully diminishes. You end up recapitulating bad dynamics that long predated the illness, and you lash out angrily—and then excoriate yourself because you know your loved one is not fully there. All this can give the caregiving experience a torturous and repetitive awfulness. (It is for good reason that Kiper makes reference to the work of Beckett and Kafka to illustrate aspects of caring for dementia patients.)
Kiper offers various examples of what it’s like for an Alzheimer’s caregiver to watch a life partner be reduced to hapless dependency and even virulent hostility—or perhaps worse, what it’s like when patients no longer recognize their loving caregivers. For Elizabeth, life with her husband, Mitch, becomes a Sisyphean battle to convince him that she is indeed his spouse and not, as he insists, an imposter. Henry has to watch as his wife, Ida, converses with the author photos on the books in their apartment while refusing to talk to him, fighting him “like a fierce, cornered animal” when he tries to dress her. Peter, crushed by the stress and frustration of trying to bathe his recalcitrant mother, falls to his knees in anguish and crushes his eyeglasses in his hands, covering his palms in blood—which has the effect of snapping his mother briefly back to her old self. “Peter,” she says with appropriate maternal concern, “have you lost your mind?”
The deterioration of mind and splintering of personality in dementia are blunt reminders that the self—the thinking “I” of the ego that Descartes and others have said was the essence of our being and was (as Descartes wrongly believed) largely independent of the body—is ultimately rooted in biological mechanics; when those decay, the self erodes.
Even as their patients are victims of their diseased minds, the caregivers are victims of their healthy ones. Kiper is at pains to reassure caregivers that lashing out at their dementia-addled loved ones is a powerfully conditioned, evolutionarily determined reaction. Moreover, responding in this way has the effect of according patients the respect of continuing to treat them as the people they used to be, instead of focusing on the degenerative neurological condition that has taken them over. For the frustrated caregiver, trapped in a vicious psychodynamic that is dehumanizing to both parties, this may provide some valuable solace.
