As someone who cared for a husband with a neurological disorder for several years, a great deal of what was in this book resonated with me. Caring for someone who is mentally impaired creates lots of emotions and many behaviors that the caregiver can find very difficult to deal with. Just knowing that other people were going through similar things would have been helpful to me when I was a caregiver. ( )

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 [book:Thinking, Fast and Slow|11468377], 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. ( )