A woman arrives at a cozy Italian restaurant, looking for her husband. When she finds him, she sits down at the table. Together, they enjoy a gin and tonic and a lively conversation. Anyone watching from the outside might envy her… but things begin to get tense towards the end of the evening.
After finishing their drinks, the man tells her that it’s been a pleasure, but that they should go home. She stealthily switches her heels for sneakers and says goodbye to her husband, leaving the restaurant. Then — after pretending to go in another direction — she turns the corner and starts running, so that she can get to the apartment (which they’ve shared for years) before him.
It’s not much use. Once he gets home, the man has completely forgotten about the date, not to mention the life they’ve shared. He accuses the woman of sneaking into his house and asks her to leave. She — desperate — tries to reason with him: she shows him their wedding photos, the joint names on the mailbox… but nothing works. The man gets even more angry.
The nights usually end with her crying in the hallway and him locked up in his bedroom. But they always start in the same way: the woman returns to the Italian restaurant to look for her husband. She knows she can always find him there. The problem is that her husband has disappeared from almost every other place in her life.
“It sounds like something out of The Twilight Zone,” writes Dasha Kiper, a clinical psychologist, in Travellers to Unimaginable Lands (2023). This is one of the stories that the author has collected, to analyze the relationship between people with dementia and their caregivers. The book combines personal cases with scientific studies and cultural references (from Borges to the Teletubbies to Chekhov). Ultimately, it ends up raising questions that are more philosophical in nature, rather than medical.
“When someone’s memory disappears — when their personality and behavior change — who are we dealing with?” the author asks. Where does personality end and where do symptoms begin? She reflects on the idea that memory isn’t merely about remembering, nor is memory loss just about forgetting. Memory is where we keep the experiences that make us who we are… it consists of the stories we tell ourselves about who we are and who others are.
Alzheimer’s is the most common of the dementias, a family of diseases that affects more than 55 million people worldwide. It’s expected that, by 2050, this figure will nearly triple. In the United States alone, there are more than 16 million caregivers looking after these patients, many of whom are family members providing unpaid care. Kiper has spent a decade accompanying these non-professional caregivers. That’s why she focused on them in a book that analyzes the most intimate part of the disease: the personal tensions and the old family wounds that are reopened with dementia.
Kiper spoke with EL PAÍS in a video conference from her New York apartment.
Question. The title of your book is based on a phrase by Oliver Sacks, who defined patients with neuronal diseases as “travelers to unimaginable lands.” Is this an individual or a collective trip? Where do your caregivers travel?
Answer. We often forget that it’s a journey that’s accompanied: at the side of the sick person, there’s a caregiver. There are two people who go to these surreal and bizarre places. I wanted to write this book to give a neurological framework to caregivers. To say to them: you’re not a bad person. When you’re arguing with [someone suffering from dementia] when you know you shouldn’t, you’re not a bad person: you’re human.
This trip to imaginary lands is made by two people, but at the same time, it’s a lonely trip and it can be disorienting. It’s surreal, but also familiar.
Q. Many of the conflicts that you portray in the book respond to previous family dynamics. They’re stories about dementia and family relationships.
A. Yes, many of the discussions that one has with a patient are discussions that have already taken place before. On the one hand, it’s assumed that there’s a profound neurological change in the patient’s brain. But on the other hand, this person is still as loving, irritating and exhausting as the person you’ve always known. Memory loss seems like something very simple, a medical diagnosis: “the person doesn’t remember.” But if you apply it to a family dynamic, everything changes. If you apply it to a father who was too harsh on his child, other dynamics come into play. It’s easy for him to accuse his son of never visiting him, even though he does. This may be a manifestation of memory loss… but it’s also the normal behavior of a father who feels that nothing his child does is ever enough. So, in many ways, the fights you have with a family member with dementia may feel eerily familiar.
Q. And this makes it difficult to distinguish between pathology and patient. Symptoms and personalities are conflated.
A. A lot of the time, I see medical professionals make the mistake of telling caregivers, “Oh, that’s not your mother, that’s her brain.” And that’s just naively binary — it’s fake, because how the hell do you know? You’re a doctor, but you don’t know what relationship the patient has with the caregiver. Maybe your mother has said something unpleasant to you… but it’s the kind of thing your mother has always said to you.
The hardest thing is that you cannot know where the person ends and the disease begins. When a doctor tells you “it’s not your mother, it’s her brain,” what he’s really telling you is that you shouldn’t be so hard on her. But that’s not the way we’re connected. We’re not programmed to understand the brain as something like a failing body. Human beings have a very intuitive understanding of cancer, because the problem is in the body. When bodies fail, we understand. But when minds fail, we find it very difficult to get rid of concepts like free will or responsibility. It’s very hard for us to not hold our family members with dementia accountable.
Oliver Sacks refers to the pathology and the patient as a marriage: they’re intertwined. And I think it’s a very nice way to express it. But I would say that this can become a trio: the disease, the patient and their caregiver. If a father has dementia, it will manifest differently with one daughter or another, depending on the individual relationship he had with each of them before. Daughters will receive different versions of their father. This disease takes on many forms.
Q. You write that caregivers aren’t saints.
A. Not only are they not saints, but many get angry when you tell them that. Because the simplification doesn’t allow them to be human beings. It’s as if they’re expected to always be self-sacrificing, generous and kind. But that’s just not the way it goes. We expect caregivers to be rational and calm because they’re usually healthy. But there’s something called emotional contagion: when one person is angry, our brains are meant to mimic other brains. And so, it’s very hard for us not to catch this feeling and become angry as well.
Ultimately, it’s not that the healthy brain trumps the sick brain. We’re at the patient’s mercy just as much as they are at ours. And I think this is something very surprising… that this distinction between the healthy brain and the unhealthy brain isn’t as clear as we would like it to be.
Q. In your book, the majority of the caregivers you talk to are women…
A. There’s a societal expectation for women to do this. In the same way that they’re expected to take on any caregiving role, right? I think that it’s expected that this comes more naturally to women. “You’re nurturers by nature… how could you feel anger and resentment?” Of course, this is absurd. It’s absurd when mothers are told that, but I think, in some ways, it’s even more absurd [when it comes to women caring for someone] with dementia, because nobody is emotionally geared to deal with this disease.
Q. I would like to tell you about a case that happened in Spain a few weeks ago. A man died in his house, due to a domestic accident. He was the caretaker of his mother — a dependent elderly woman — who died a few days later due to starvation. The bodies weren’t found until weeks later, when neighbors alerted the authorities about the smell. We know that illness and old age can isolate a person… but do they have a contagion effect on the caregiver?
A. Old age isolates, just like dementia isolates. And, in my opinion, caregivers can become even more isolated. It’s a depressing illness. With other illnesses, people are supportive… but with dementia, caregivers often talk about how friends and family are too uncomfortable and depressed, so they leave. With cancer, you can feel sorry for the patient: you share a reality and concerns. But with dementia, you’re alone. The symptoms are extremely isolating. The patient and the caregiver live in two different realities. Biologically, we’re not programmed to experience stress alone — our instinct is to share it. Therefore, loneliness for a caregiver is actually the biggest risk.
Q. What happens when a patient dies and the caregiver must resume their life?
A. Some people really feel free because they can get back to their lives. And that’s a positive thing, it’s a good thing. But many times — since they’re no longer in a constant state of emergency, managing crises — they have time to think. And many sink into guilt. They begin to review their reactions, all the decisions they made. They may ask themselves: “Was that the right decision? Should I have done it this way or that way?”
As a caregiver, you have to make many ethical decisions. And when the person dies, you have time to reflect and punish yourself. It’s like soldiers coming back from war: we expect them to be happy to be back to normal life, but your brain and your biology are still in fight mode. I think that there’s a lot of trauma and a lot of flashbacks.
Q. You dedicate the book to your parents. Have you had to act as a caregiver for them?
A. No, no. Luckily, my parents don’t have any type of cognitive impairment. I dedicated the book to them because they supported me a lot and are interested in what I do… and I know that’s a great gift. I ran a group of caregivers for a long time and they were all about my age, millennials. And many had very difficult relationships with their parents. When they reached certain vital milestones in their adult lives — when they got married, had children, or had success at work — they couldn’t share that joy with their parents. They desperately sought that validation. While writing this book, I kept all of that in mind. It’s a gift that your parents can still share life with you, for them to be there to recognize what you’re doing…
When you work in this field, you value the little things, like having a cup of coffee and having a conversation with your mom or dad and knowing how, in that moment, you’re living in the same reality.
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