Random House Author Dasha Kiper on Dementia & the Role of the Caregiver
What led you to the subject matter of dementia and Alzheimer’s?
I fell into this field more or less by accident. On my way to getting a PhD in clinical psychology, I mentioned to a friend that my studies were beginning to feel unfulfilling. I was doing empirical research and I was yearning for a more interactive experience, dealing with people rather than data. He said that he knew a man who needed someone to look after his father who had Alzheimer’s. When I met with this man, he asked if I would consider living with his father until he could work out a more permanent solution. It was uncharacteristically rash, especially considering how determined I was to stay on an academic path, but once I met the man’s father and began to research this disease, I saw that I could be useful and also learn a great deal. To witness someone trying to preserve a sense of self despite a disease that is stealing it away was fascinating, moving, and more of an education than I was getting in academia.
Tell us about one thing you learned while writing this book.
Well, naturally, I learned more than just one thing. In general terms, however, I suppose I learned that the “healthy mind” has as much to teach us as the afflicted mind. Because the caregiver’s mind is “healthy,” we tend to think that it can adapt to dementia disorders. We expect caregivers to be rational, and understanding, and to accommodate the new reality the disease presents. Unfortunately, many caregivers, despite knowing better, end up mirroring the symptoms of the people they’re trying to help. They become as irrational, as emotionally volatile, and as inflexible as the person with the disease. And because of this, much of their heartbreak consists not just in losing a loved one, but in the knowledge that they’re behaving in ways they know are unfair and counterproductive. This comes with a great deal of shame.
Alzheimer’s doesn’t just pose an emotional challenge to caregivers; it presents a cognitive challenge as well. When someone close to us loses memory and begin to behave irrationally, it upends our brain’s built-in expectations, biases, needs, and assumptions. Dementia disorders create a world where a caregiver’s natural adaptive instincts, particularly social instincts, actually work against their best intentions—and this is why they struggle. It’s not because they’re unfeeling or insensitive, but because this disease in it’s own way is as disorienting for the caregiver as it is for the person afflicted.
In your experience, what do loved ones find most difficult in their role as caregivers?
There are so many issues that it’s hard to choose. One of the great struggles is making decisions on behalf of someone else. In ordinary circumstances, it goes without saying that adults get to make decisions for themselves, no matter how ill-conceived they might be. But when we have to override such decisions or simply make them for other people, it puts us in an untenable moral position. This is especially true when our decisions go against someone’s self-image. Imagine taking away a parent’s driver’s license when he or she still feels capable of driving. Or what about when hiring someone to care for parents or spouses who are convinced, they can manage by themselves? It’s why so many caregivers feel that they’re betraying their loved ones.
Caregivers must also determine the right time to make such decisions. This is both ethically troubling and deeply draining. Our mind abhors ambiguity, and making important decisions when feeling alone is cognitively more difficult when no one else is involved. And, sadly, many caregivers find themselves making important decisions in isolation. So dealing with this illness and its symptoms is often a relentless reminder that it’s all on us, the individual caregiver.
If you could give one encouraging suggestion to caregivers everywhere, what would it be?
Even though my book addresses the healthy brain’s vulnerability and cognitive limitations, I don’t want caregivers to come away feeling dispirited. On the contrary, by providing a neurological framework for how the caregiver’s brain is challenged by dementia disorders, I want them to feel the same urgency to care for themselves as they do for the people they’re looking after. I want caregivers to extend compassion to themselves, which means recognizing that they need and deserve time away. I would encourage caregivers to allow themselves a reprieve, a chance to get out of the house in order to replenish and nourish their minds. What’s good for them also happens to be good for the people they’re caring for.
What do you look forward to exploring further in your studies?
Neurological disorders present us with many fascinating philosophical questions and ethical dilemmas. I hope to continue studying how these big, heady questions make their way into everyday life, showcasing the very real conflicts and problems that caregivers often contend with.