The philosopher and professor at the University of Barcelona Norbert Bilbeny delves into the ethical aspects of Alzheimer’s disease and how the loss affects patients and their families in his latest work (‘The disease of forgetting’, Ed. Galaxia Gutenberg). of identity of those who no longer remember their name. In an illuminating but necessarily painful book given the subject it deals with, he writes that we are facing a drama in which two innocences intersect: that of the patient and that of his family. And it is a drama that grows like an oil stain. By the year 2050, he points out, in Spain there will be 1.5 million people who will suffer from senile dementia, the vast majority of whom are Alzheimer’s. That forces many questions to be asked, and not only in the medical field. They are the ones that he makes himself and with which he forces us to reflect, individually and collectively.
– Quote in the book a phrase of the German writer Jean Paul: «Memory is the only paradise from which we cannot be expelled». But it’s not like that. This disease expels us.
– That’s why losing one hundred percent memory, coming to not knowing who one is, is so dramatic.
– Somehow, memory wears out with age. Faces blur, the outlines of places we’ve been blur. Paradise is reduced to all of us.
– But Alzheimer’s patients, like those affected by other types of senile dementia, are doubly expelled. On the one hand, due to that natural wear and tear over the years; and, on the other, for accidental reasons. We begin to lose memory from the age of 30, so that what has been noticed before in it stays better. And then, furthermore, memory is selective. There are facts of childhood that we want to erase and others that we like and keep. That also evolves.
– Those around people with Alzheimer’s also lose part of their memory because they will no longer know stories from the family past.
– Many of us remember that, when we were 5 or 10 years old, our grandparents were in their 60s and we saw them active and told us things. That served us well in later life, although we were not aware of it at the time. But in recent decades the transmission of knowledge has deteriorated. Today the grandson influences the grandfather because he helps him with technology or tells him about the series that he cannot miss. Not so much the other way around.
The identity
– What kind of person is the one who has no memory? Where is your personal identity?
– The personal identity is gone. Personality is the light of identity. The Alzheimer’s patient’s personality and identity disappear, but not what I call ‘personhood’, the condition and quality of being a person. I usually compare it to a candle: the wax is consumed but the flame continues. The person is that flame, it is there until the end. He continues to be a being who, like everyone else, has an essential value: dignity, the only one that is absolute. Because not even freedom is.
– There is something that seems paradoxical: animals have memory, some human beings lose it. It is difficult to accept it.
– Animals have instinct, which always tells them without having to choose. His memory is instinctive, while ours we have acquired above all by experience. There is a difference not of nature, but of scale. We build it with our understanding and imagination, and that is something that is done over the years.
– You speak in the book about the process of individualization that our societies are experiencing. If we are less and less motivated to live as a couple and we don’t have children, who will take care of us and be our memories?
– This not only puts the patient to the test, who finds it very hard especially in the first months after diagnosis. It also and above all affects those who accompany it. In the face of Alzheimer’s, humanity is put to the test. We see who is decent and loving and who is not. Now the families are reduced, the couples have another type of coexistence and this is going to affect the way of treating the disease. The one who supports it better is the one who has a partner, a family. In Spain it is better than in other places where there is less family life. The spouse, children or siblings play a key role because the patient will live better if love is shown.
– What happens with those who do not have direct family? Soon many people will reach old age who do not have siblings, nor have they had children and have been able to lose their partner. What will become of them if they suffer from Alzheimer’s?
– We should build a society that functions as a unit of affection to replace the family. We should make up for it through a community life that creates a welcoming environment.
– And what happens when the patient can no longer be kept at home and has to go to a residence? Since nobody knows him there, his personal identity is even more erased.
– This jump begins to occur when the patient begins to be treated to a greater extent by caregivers, a group made up of people who deserve a tribute. They will have to be told who the person they care for is, what he has done in his life, what he was doing, so that it does not become something to manage. Resources will have to be allocated so that these centers have knowledge of the sick, that they do not see them as clients or patients, but as people who were and continue to be a ‘who’.
– We are already talking about families. Is the disease as devastating for them as it is for those who suffer from it?
– The patient does not suffer, he does not realize anything. He looks in the mirror and doesn’t know who he is. To cite just two famous cases, Solé Tura did not identify the Internacional when they put it on, and Suárez, when they spoke to him about her daughter Marian, asked who she was. Unfortunately, there are thousands of examples and there are going to be more because it is estimated that in Spain, in 2050, 1.5 million people will suffer from senile dementia, mostly Alzheimer’s.
Depression
– The figure is terrifying.
– And it is made up of particular cases that affect us all. Two important personalities of the life of Barcelona, close friends since childhood, who did many things together, have coincided in a center for Alzheimer’s patients and when they pass each other in the corridors they do not recognize each other. That is the reality and I know it well because from time to time I go to visit one of them, who is my friend.
– For the family that must be unbearable.
– There is a high percentage of people who care for Alzheimer’s patients, I am talking about relatives, not care professionals, who suffer from depression. It is caused by the inexorable advance of the disease, which causes discouragement to spread. That is why the provision of care and love is so meritorious, knowing that it is not very useful. It is a very human pain, that not everyone copes well, something that puts us to the test.
– And the fear of descendants to inherit evil?
– It is not proven that it is a hereditary disease but it is not ruled out that there may be such a component. It is something that many fear, even more than heart disease or cancer. The loss of the mind is something that is feared like few things. The relatives say that they are no longer the same people, because they have lost their identity.
– I guess that’s the fear, that the descendant will also lose her in the future.
– We can all end like this. I know that is a distressing thought. The difference between being mentally healthy and suffering from Alzheimer’s is not radical, but one of degree. The rest of us have also been losing things, it is something human. From our birth we are exposed to the contingency of memory. Some will memorize things better; others, worse. Memory is malleable. The drama of the sick is that this loss is total.
oblivion
– In your book, you comment that the current educational system rejects memorization and instead the drama of our lives can be losing our memory. Does that paradox make sense?
– It is so. We have been losing our ability to memorize, which many used to have. I speak to you from an intellectual point of view. We use the mind for complex operations that require intelligence, but learning requires memory. And yet this is getting shorter.
– Because?
– We have many external stimuli and that makes us soon forget things. We do not remember a series that we have seen a month ago because since then we have seen so many… At other times in history our memory was richer. Now we do not remember more than a few passwords and a few data from everyday life.
– That goes further. Before, we all had dozens of phone numbers memorized. Today we hardly remember our own number.
– Plato already complained that writing is forgetting. Look at what happens with the agendas, no matter what format they have. We write down very everyday things that we must do. There is a progressive replacement of memory by other means, in the same way that we replace mental calculation with the use of calculators.
– Mind scientists claim that we could soon carry a device connected to our brain that would serve us more or less like a GPS. What is striking is that, on the other hand, we have not made any progress against Alzheimer’s.
– And who knows if the same thing will happen with the imagination. It is a paradox, of course. But think how useful a device that guides them to their house can be for someone with Alzheimer’s.