Talking to Mercè Boada is talking with optimism, despite the fact that her Ace Alzheimer Center in Barcelona is full of patients, both in the public and private areas. This 76-year-old woman is an expert in fighting Alzheimer’s. Neurologist and co-founder and medical director of Ace Alzheimer Center, Boada has just received the gold medal for scientific merit from Barcelona City Council: “The awards surprise me. My professional and human profile is that of a normal person. I am not a born scientist, but I know where science has to go.”
Ask. Will there soon be a drug against Alzheimer’s?
Answer. Yes. The drugs we have been using until now have been the basic pillar for treating patients and for developing other drugs, but they have been reviled. Indeed, they do not cure, but they have allowed us to slow down as much as possible and learn to diagnose. Now we have new drugs that can clean the [proteína] amyloid beta in a shorter period and reduce deterioration. It is a statistical concept: if, for example, I have a slope of deterioration and these medications have reduced this slope; We have improved between 27% and 30%, I will continue to decline, but I have smoothed out this decline and I will have a better quality of life and cognitive survival for longer.
P. How does a family member understand that cognitive impairment is reduced by 30%? How does it affect in practice?
R. Very complicated because they ask you: but will I be better? Yes, above all, you will be better for longer. And that is important because life goes on and drugs change. I water my plant every day so that it makes it to next spring.
P. When will we lose the fear of Alzheimer’s?
R. Why do we now have little fear of breast cancer? Because we have treatment. I am very optimistic: when we have the experience of two years of treatment with these new drugs, society will lose its fear.
“I am very optimistic: with new drugs, society will lose fear”
P. For years, attention has been focused on trying to stop the cognitive deterioration of a person with advanced disease, but a decade or more ago, the scientific community took a turn and began to focus on trying to prevent the development of the disease. Have you been looking in the wrong place?
R. No, we weren’t looking in the wrong place. If I go back to the seventies, the world focused on knowing how many of us there were, what we would have, and big studies began. What did we want to know? When it started, how long it evolved, what predominance was there of men and women and what comorbidities were involved. And this continues to be very important. If we do global health prevention, there are 10 elements in which we can reduce the prevalence and even the incidence of deterioration: cardiovascular risk, I need a well-watered brain; I also have to control head trauma and toxic substances, such as smoking or drinking, but also environmental toxicity. The latter does not depend on me, but on state programs to reduce air pollution. So healthy living, eating well, exercising, but also social exercise: I have to talk, read, watch movies, dance and, above all, discuss my life with others. This is the best resilience. With all this, I turn to another prevention of Alzheimer’s: with education I reduce my risk because my brain has tools to make up for a deficit. All this is prevention. Why is a diagnosis of Alzheimer’s more difficult with a high-ranking academic? Because he has many resources to hide it. My ability for this brain to continue working is to know who is in front of me, what it knows how to do and how I have to maintain these abilities that it has always had, so that this helps it to live.
P. Does the patient suffer?
R. The response to loss is different. There is a patient profile that realizes what they are losing and refuses everything: I go out rarely, I don’t want to be with people, I withdraw and become ostracized. I shrink into an armchair. And then there is a symptom, difficult to correct, which is anosognosia: the brain, instead of seeing its reality, looks in the mirror and says: ‘Wow, I look like Marilyn Monroe.’ Her brain has no capacity to see her reality. How do you handle them? God and help. [Estos pacientes] They can’t understand that they can’t. These are the attitudes: one tends towards depression; The other does not realize the situation. And in the middle is the family.
P. How do you protect the family and the caregiver from Alzheimer’s?
R. With magnificent information. The most important thing is not to create uncertainty and that they learn to make early decisions. Will I end up in a residence? Yes. But the residence is not the final point, it is not where I abandon it, but where it will be better. Another example: the studies are just as satisfactory in terms of nutrition, also when people eat ice cream instead of damn soup and damn boiled chicken. An ice cream instead of the damn soup: the Alzheimer’s patient must have satisfaction. One is to give happiness to life. Why should I be punitive when all I can do is open my hand?
P. Is there a genetic predisposition to suffer from Alzheimer’s?
R. Yes, it exists. At this moment you are in a center that has the genetic bank as the only most important site in Europe. We have more than 20,000 correlated samples. In this disease we not only have a gene, but genes that are at risk. Genes related to a greater or lesser extent will allow us to find drugs that enhance the protective value or reduce the risk. But we do know that there are certain, minimal mutations. Let’s not be scared. The mutations that are inherited, which means that if I have it, my offspring will have it, do not reach 5%. These groups, above all, occur in endogamies, small and isolated cities where generation after generation the cousin has married the cousin, the transmission of the genetic mutation is very important. What is the purpose of understanding this genetic mutation? In order to know how many people have it and learn within the studies, look for mutations to obtain genetic information. What is the future? Train doctors who can provide this information, who know the functionality of genes and interpret your genetic map. This is where we are at Ace Alzheimer Center. What is our wish? Let our institution that treats patients disappear to become an institution so that there are no patients.
P. When will that happen?
R. In little.
P. Will you see it?
R. I think if. If I have the ability to at least live the age of my parents, to reach 85. These 10 future years are going to be decisive. I have a 10-year project.
P. Are your patients getting younger?
R. We have people with Alzheimer’s becoming healthier so that they do not develop it. That means my prevention will start sooner. Once society is informed, it decides. If I have blood samples in stool I can do two things: the stupidity of ignoring it or going to the oncologist. This is the pattern that we have to change in Alzheimer’s, but it is not easy: in the case of cancer, when I assume it, it gives the individual a prestige of great humanity; When I talk about Alzheimer’s, it is a deterioration, it is my weakness, it is my intellectual poverty. It’s the feeling that I stop being me and become I don’t know who and that the rest of us lose this image that I had. It is a tremendous pain.
“We must not lose Maragall’s integrity and image will”
P. Did Pasqual Maragall’s testimony in 2007 change the sensitivity of Catalan society a little?
R. I thank Maragall, I adore him. He marked a milestone with two words: “I have Alzheimer’s, but I am not insane.” At the time Pasqual Maragall said what he had, the first drugs were appearing, which failed. It has taken many years for us to have a drug that improves 30% of decline. But we must not lose Maragall’s integrity, his great desire for image.
P. From the time the patient is lost until the patient dies, a long time can pass.
R. We will also learn things here. It’s the worst. The more we learn about the illness and what a future we know well looks like, the more we will have the ability to decide when we want to stop living this way.
P. When will that happen?
R. When society also understands that saying that a society is dignified means having the option of a dignified death. That I can calmly say to my son and my grandchildren: ‘Guys, I’m going to leave and be happy. This is my final point. So far. I have been very happy. Tomorrow, celebrate with a glass of champagne and say that you have had a mother, a woman, a hilarious grandmother, who wanted to live her life intensely.’