Book - Travelers to Unimaginable Lands by Dasha Kiper
This book hits a sweet spot for two audiences: people who have found themselves in a caretaking role for a loved one with dementia and for clinicians working with those caregivers. As our population ages, the number of people in caregiver roles is rapidly growing, and many people are finding themselves wrestling with a diagnosis they vaguely understand. Anchored in poignant stories from her career as a clinician, Dasha Kiper unpacks dementia’s impact on those who love people with dementia.
I take recommendations from my clients seriously.
When a person tells me they’ve really connected with a book (... or to be honest, almost anything: a podcast, an article, a piece of music) my ears perk up and so many questions run through my mind: What spoke to them in that book? Is it one my other clients might benefit from? Frankly, is it the kind of book I agree with as a clinician? Just because a book was a good read, is it in line with the work we are doing? Is it rooted in current research - or is something else that can help me understand my client better?
Hearing that a book has strongly passed the critical review of one client means there’s something there. But when two clients strongly recommend the same book, I know I need to do some reading.
This was the case with Travelers to Unimaginable Lands. It is a powerful book, particularly for people entering the new world of caring for a loved one with dementia. While this audience seems pretty narrow, the reality is that each day more and more people are finding themselves in this role, especially as medical technologies continue to extend lifespan. But the book has a larger audience as well - it is also for people fascinated by the human brain and big ideas like how we construct meaning, the role of emotions in reason, and the concepts of self and agency.
Dasha Kiper is an author and a clinician. In her role as a therapist she has worked with many people who have found themselves in the caregiving role for a loved one with dementia. She has also been a caregiver herself and writes about her own experiences caring for an elderly man. This book tells stories of these people and uses their stories to explore questions that come up for people in this role. Questions including: why do we get stuck in arguments with people with dementia, why is it so hard to see the disease, why do we hold on to people having self-awareness when we know they don’t, why do we take their words and actions personally, why do we dispute the patient’s reality, and why is it so hard to let go of blame? Her answers to these questions are rooted in current research both of dementia and neuroscience. Ultimately she makes the point that the healthy brain’s natural processes make it uniquely difficult to deal with the cognitively impaired brain - it’s not just character flaws in the caregiver that make the task more complicated, but the caregiver’s brain doing what it is naturally inclined to do.
She also engages a tension many of us experience when we think about dementia: something in us wants to believe that our neural networks don’t define us - that we’re in charge of our actions - but are we? We do not want to accept the idea that moral decisions (and moral missteps) may have a neurological source. It’s because of this we have trouble forgiving loved ones for their behavior despite our awareness of their brain’s deficits.
Through these chapters she demonstrates the power of these natural brain biases and intuitions and shows how it is these biases and intuitions allow us to feel connected to the person whose mind is quickly and one-directionally changing, to blame the patient (despite their neurological disease), and to feel a deep moral accountability to them. It is also these fundamental aspects of our brain that make it hard to let go of our hurt and helps us hold on to a patient’s humanity.
“In order for caregivers to resist old habits when reacting to their patient’s demands, they need to switch from unconscious to conscious responses.” “The brain makes this difficult. The brain’s objective, after all, is not to be wise or right or even reasonable, but to conserve energy. Why spend energy on expensive “conscious” activities when “cheaper” unconscious processes are handy. 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 the neural groove becomes and the harder it is to choose a different path.” Chapter 2: Why it is so hard to change Our responses
“Imposing order on random events is such a powerful instinct that psychologists have found that when people experience a loss of control, they are more likely to see patterns where none exist…The mind always bends what is unpredictable into what feels familiar.” Chapter 3 - Why it takes so long to see the disease
“Consciousness in human beings is accompanied by the intuition that we have volition and free will. This intuition is continually reinforced by the story consciousness invents, the one in which consciousness is responsible for all of our actions.” Chapter 5: Why we feel patients are still capable of self-awareness
“Human beings are ultra-social animals who require other people to see the world as we do - this need for a shared reality creates connection and validates feelings, judgments, and a sense of self. Without this validation we become physically agitated and cognitively uncertain about what we know and who we are. We naturally over-estimate the degree to which others, especially loved ones share our thoughts and perceptions. When a spouse or a loved one sees the world differently from us, we might intellectually register this as a symptom but unconsciously feel that an implicit social promise has been broken.” Chapter 6: Why we dispute a patient’s reality
“Even when we know our decisions are for the best, denying a person’s right to choose still feels like a moral violation as long as we continue to see an essential moral self.” Chapter 10: When the right thing is the wrong thing
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