Who cares for carers of people with dementia? “Your mind is falling apart”

About 55 million people worldwide suffer from some type of dementia. 800,000 in Spain, according to estimates by the Spanish Society of Neurology (SEN), and this figure is expected to triple in 2050, motivating research and our attention to those who suffer from these disorders. But next to every patient there is a nurse, a shadow figure whom the clinical psychologist Dasha Kiper put it in the center Travel to unimaginable countries (Asteroid Books), a compassionate and surprising essay in which, inspired by what her admirer Oliver Sacks called “romantic science,” she tries to show caregivers how their reactions (to anger, frustration, disbelief, isolation, great sadness) are not only understandable, but also dictated by your own brain.

“Brain healthy has been unable to adapt to dementia and the caregivers’ minds are falling apart. It is not easy to live with a person who grossly disregards the rules of time, order and continuity.. So rather than offering redemptive lessons, my intention is to normalize the caregiver’s denial, anger, frustration and helplessness by explaining why these communication failures occur,” he explains to EL MUNDO.

There are no clear answers

Drawing on her own (and frustrating) experience as a caregiver and after many years as a director of clinical consultations for patient support groups, the author creates a case-based guide that combines literature, psychology, philosophy and neuroscience – Borges, Antonio Damasio, Chekhov, David Egelman, Kant and Daniel Kahneman move through its pages with equal ease – to answer what makes caregivers lose patience, why it is so difficult to “let go” of a loved one or Where does anger, guilt and disappointment come from?.

As Kiper explains, the key to our misunderstanding of this “unimaginable” disease lies in “ambiguity, a concept that psychology and neuroscience have barely addressed,” he laments. “We tend to think that a healthy brain is one thing and a sick brain is another, but Those with dementia are much more capable than we think. In fact, it may still be as provoking and annoying to the caregiver as before. “Sick people have talent, resources, a sense of humor, and can push the buttons that activate all of our emotions.”

But the fact is that personality, character and tastes, everything that makes us up, is not something that is located at some specific point in our consciousness that can be immediately erased. “Many times we say that a creature Idisappears. If it disappeared completely, this disease would still be devastating, but we would be less crazy.it would be more manageable,” says Kiper. “But this I it doesn’t disappear. I’m not a philosopher, so I can’t say how much is left or not, but I know for sure that the guardian sees traces of his father, husband, friend, sister. Part of the challenge is knowing what to actually expect from the patient. Everyone wants an answer, but This is the problem with this disease: there is nothing, absolutely nothing, that is certain.“.

This reality leads to one of the greatest problems of dementia—denial, which, like many of the imbalances of the disease, relies on the evolutionary abilities that our brains have developed. “In normal context When we don’t remember something, we create a narrative.. This is what our memory is based on, constantly reconstructing what we do not remember. For this reason, many patients are initially unaware of their condition,” explains the psychologist. However, “dementia blindness“, as Keeper calls it, “also has a profound effect on caregivers because our minds fill what we don’t know, or what we don’t know, with expectations or with another plausible narrative.”

Learn to “talk about Alzheimer’s”

For example, Kiper tells the story of a father and son who never got along well. “From a young age, the father despised his son, considering him not good enough.who didn’t know how to do anything. And when he got sick and his son confronted him with incoherent actions such as putting the kettle in the oven, the father became defensive and the old vision of his son remained in his mind,” he explains. “But the most amazing thing is that what his son, even knowing that his father suffered from Alzheimer’s diseaseI, too, still thought that my father was the same idiot he had been all his life, I forgot about the disease“.

Again, thanks to biological adaptation, “our cognitive being depends largely on the minds and feelings of others, our nervous system literally imitates other people’s nervous systems“, notes the psychologist. “Carers have a responsibility to be calm, rational and flexible. And in theory this sounds great, but there is a very intuitive part of us, and if your mother or your husband is very anxious, paranoid, or angry with you during many days of their marriage, those feelings will rub off on you. That is We are at the mercy of other minds, even if those minds fade away.“.

Another case. A grandmother with dementia always reproaches her granddaughter for never coming to visit her, for abandoning her. She combines work and gives up social life in order to visit her every day, despite unfounded reproaches. “His grandmother does not remember the visits, she only has a feeling of abandonment. because the disease is chaotic. And when people experience this chaos and lack of temporality, they cling to their feelings.” Keeper suggested that his granddaughter learn to “speak Alzheimer’s” so that she would always tell her grandmother how happy she was visiting her and how much she loved her. , instead of talking about how often he visited her, because she was not going to accept information and facts.”You have to attack the emotional because it doesn’t matter whether you talk to him about tomorrow or about yesterday, there is no time for a sick person.. It’s hard, but necessary, because otherwise it’s impossible to lead a life other than being a caregiver.”

Destigmatize the caregiver

A social problem, a low-profile one, which, based on progress rates for this type of disease, should be a priority. “We live in mass denial of this reality, it is not something society invests in.. They seem to be telling us that if someone in your family gets sick, you should take care of them. But no one realizes how much it costs, not only on a financial level, but also on a family and personal level, and how it affects the brains of caregivers,” Keeper lamented. “In our culture, love is often associated with the idea of ​​sacrifice. There are many caregivers who have even sacrificed their entire lives, and it is unfair that they feel anger and resentment. and that this leads to guilt and shame.”

“For a long time we said that people with dementia were crazy or morally problematic and that the stigma no longer existed. I want carers to show them the compassion we give to people living with dementia. and create that neurological structure that explains their behavior as something normal in the brain that they don’t even decide or control.”that caregivers can forgive themselves and that we can all understand the complexity of the human mind a little better.

Keeper ends his book with an emotional epilogue in which he explores what happens next when the caregiver must once again adapt to life without a patient as demanding as a person with dementia. “There are different emotions, but mostly people feel relieved stop living in a kind of permanent crisis. But they also miss the person and feel guilty for feeling relieved.. It’s difficult,” he explains. “Obviously, when you have experience as a carer, your life changes. I I compare this to soldiers who also have to adapt to an emotionally extreme environment. and when they return home, their brains should switch from maximum stress survival mode to a more natural one. “It takes time to readjust.”