Dasha Kiper, psychologist specializing in dementia: “The most difficult thing is not knowing where a person ends and the disease begins” | Health and wellness
A woman comes to a cozy Italian restaurant looking for her husband. Having found it, he sits down at the table and they enjoy it together gin and tonic and lively conversation. Anyone watching from the outside might envy their complicity, but by the end of the evening things start to heat up. After finishing his drink, the man tells him that it was nice, but it’s time for everyone to go home. She secretly changes her shoes to sneakers. She says goodbye to her husband and pretends to go in a different direction, but when she turns the corner, she starts running to catch up with him to the apartment they shared for many years. It’s useless. Returning home, the man completely forgot about the date and the life they shared. He accuses the woman of breaking into his house and asks her to leave. In desperation, she tries to reason: she shows him her wedding photographs, joint names in the mailbox, but to no avail. The man gets even angrier. Nights usually end with her crying in the hallway and him locking himself in the room. But it always starts the same way: a woman returns to an Italian restaurant to look for her husband. You know you can always find him there. The problem is that her husband has disappeared almost everywhere in their lives.
“It looks like something from Unknown dimension– clinical psychologist Dasha Kiper writes in her book. Travel to unimaginable countries (Books about asteroids). This is one of the stories the author collected to explore the relationships between people with dementia and their carers. The book combines personal anecdotes with scientific research and cultural references (from Borges to the Teletubbies to Chekhov), ultimately raising philosophical rather than medical questions. “When someone loses their memory, when their personality and behavior changes, who are we dealing with?” — the author asks. Where does personality end and symptoms begin? “Memory is not just remembering, and memory loss is not just forgetting,” he reflects. Well, that’s where we store the experiences that make us who we are. The stories we tell ourselves about who we are and who others are.
Alzheimer’s disease is the most common dementia, a family of diseases that affects more than 55 million people worldwide. This figure is expected to almost triple by 2050. In the United States alone, these patients are cared for by more than 16 million people, many of whom are family members who provide unpaid care. Keeper dedicated himself to accompanying these lay caregivers for ten years. That’s why he focuses on them in a book that examines the most intimate parts of the disease, the personal struggles and old family wounds that reopen in dementia. He answers questions from EL PAÍS via videoconference from his apartment in New York.
Ask. The title of his book is based on a phrase by Oliver Sacks, who defined patients with neuronal diseases as “travellers traveling to unimaginable lands.” Is this an individual or group trip? Where do your caregivers travel?
Reply. Often we forget that this is a journey that is accompanied, that there is a caregiver next to the sick person. There are two people who go to these surreal, strange and bizarre places. I wanted to write this book to give caregivers a neurological foundation. Tell them: you are not a bad person, that’s why it’s hard for you, that’s why you quarrel, that’s why it’s hard for you to see the disease and not your mother. And that doesn’t make you bad, it makes you human. This journey to imaginary lands is made by two people, but at the same time it is a solo journey and can be disorienting. It’s surreal but familiar at the same time.
TO. Many of the conflicts described in the book are responses to previous family dynamics. These are stories about dementia and family relationships.
R. Yes, many of the discussions you have with your patient are discussions you’ve already had before. On the one hand, it is assumed that profound neurological changes occur in the patient’s brain. But on the other hand, this person is still just as loving, annoying and tiring as the person you always knew. Memory loss seems like something very simple, a medical diagnosis: “Okay, the person doesn’t remember.” But if you apply this to family dynamics, everything changes. If you apply this to a parent who has been too harsh with their child, other dynamics come into play. In this case, it is easy for him to despise his son, to reproach him for never visiting him. This may be a manifestation of memory loss, but the normal behavior of a parent to whom his child does nothing is sufficient. So in many ways, your arguments with a family member with dementia feel eerily familiar.
Memory loss seems like a very simple thing, but when you apply it to family dynamics, everything changes.
TO. And this makes it difficult to distinguish between the pathology and the patient. Symptoms and personality are confused…
R. Many times I have seen healthcare professionals make the mistake of telling caregivers, “It’s not your mother, it’s her brain,” and that’s not just naive and binary. This is fake because how do you know? You are a doctor, but you don’t know what the patient’s relationship is with their caregiver. Your mother may have said something unpleasant to you, but that’s the kind of thing your mother always told you. The hardest thing is that you cannot know where a person ends and the disease begins. When a doctor tells you that “it’s her brain, not your mother’s,” she’s really telling you that you shouldn’t be so hard on her. But this is not the way we are connected. We are not programmed to perceive the brain as something innocent, like a weakening body. People understand cancer very intuitively because the problem is in the body. When bodies fail, we understand. But when reason fails, we find it very difficult to let go of concepts like free will or responsibility. It is very difficult for us not to demand responsibility.
Oliver Sacks treats the pathology and the patient as a marriage, they are intertwined. And I think that’s a very good way to put it. But I would say that they can become a trio: the disease, the patient and the caregiver. If a father has dementia, it will manifest itself differently in a given daughter depending on the individual relationship he previously had with them. Daughters will get different versions of their father. This disease takes many forms.
TO. You say that educators are not saints.
R. Not only is this not true, many people get angry when they are told about it. Because this is a simplification that does not allow them to be human. It’s as if they are expected to always be selfless, generous and kind. All wrong. We expect caregivers to be rational and calm because they are healthy, but our brains are programmed to imitate other brains. Therefore, if someone is angry, it is very difficult for us not to catch this feeling and not get angry too. Ultimately, it is not that a healthy brain is superior to a diseased brain. We are in their power just as they are in ours. And I think it’s very surprising that the distinction between a healthy brain and an unhealthy brain is not as clear as we would like.
When bodies fail, we understand. But when reason fails, it is very difficult for us not to demand responsibility.
TO. In her book, most of the caregivers she interacts with are women…
R. In society, women are expected to take care of this just like any other caregiving role. It is even expected that this is natural for us, because it is clear that we are breeders by nature, and this is absurd. It’s absurd when mothers are told this, but it’s even more absurd with dementia because no one is emotionally equipped to cope with this disease. This is contrary to our nature. There is a societal expectation that this should come naturally to women. “Of course they should bring their mother to live at home with them.” “Of course they should quit their jobs.” “Of course they should give up public life.” “And they must accept all this without any resentment.” This means that dementia is understood as their individual problem, rather than our social problem.
TO. I would like to explain an incident that happened in Spain a few weeks ago. The man died at home as a result of a domestic accident. He was the guardian of his mother, an elderly female dependent, who died a few days later from starvation. The bodies were not found until weeks later after neighbors alerted them to the smell. We know that illness and old age can isolate a person, but do they have a contagious effect on the caregiver?
R. Isolates old age, isolates dementia. And in my opinion, caregivers may find themselves even more isolated. This is a depressive illness. In other illnesses people are supportive, but in dementia carers see friends and family feeling too uncomfortable and overwhelmed, so they leave. With cancer, you can feel sorry for the patient; you share reality and experiences. But with dementia you are alone, its symptoms extremely isolating. The patient and caregiver live in two different realities. Biologically, we are not programmed to experience stress alone; our instinct is to share it. So loneliness for the caregiver is actually the biggest risk…
Society expects this (dementia care) to come naturally to women. Of course, they should bring their mother with them to live at home with them. Of course they should quit their jobs. Of course they should give up public life.
TO. What happens when a patient dies and the caregiver has to resume their life?
R. Some people really feel free, they can get back to their lives. And this is a positive thing, it’s good that this is happening. But in many cases, since they are no longer in a constant state of emergency and no longer need to manage crises, they have time to think. And many are plunged into feelings of guilt. They begin to reconsider their reactions, all the decisions they have made and ask themselves: “Was this the right decision?”, “Should I have done this or that way?” As a caregiver, you have many ethical decisions to make. And when everything happens, you have time to come to your senses and punish yourself. They are like soldiers returning from war. Getting back to normal is all well and good, but your brain and biology are still in battle mode. They learned to cope with strange and incongruous environments. And when they return to normal life, a lot of trauma awaits them and a lot of memories. It’s like living with one foot in each reality.
TO. You dedicate the book to your parents, did you have to take care of them?
R. No no. Fortunately, my parents do not have any cognitive impairments. I dedicated the book to them because they were very supportive and interested in what I do, and I know it is a great gift. I managed 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 adulthood, when they got married, had children, or achieved success at work… They could not share this joy with their parents and desperately sought this confirmation. I kept all of this in mind while writing this book. The gift that your parents can still share your life with you. Let them be around and understand what you do… When you work in this field, you appreciate the little things… grab a cup of coffee and enjoy the conversation. Know that you live in the same reality.
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