“Voices That Matter”: Living with Alzheimer’s Disease and Other Neurodegenerative Conditions

There are still diseases that leave us with far more questions than answers.

Alzheimer’s disease and other neurodegenerative conditions are among them. We need research. A great deal of it. Outstanding professionals are dedicating their lives to understanding what happens in our brains, why we become ill, and how we might prevent, slow down, or perhaps one day avoid certain diseases altogether. Every advance matters.

But there is one aspect of these diseases that no scientific paper can ever fully explain.

What it is like to live with them.

Only those who are experiencing it can tell us that.

On September 21, World Alzheimer’s Day, the Fundació Catalunya La Pedrera presented “Veus que compten” (Voices That Matter), an audiovisual series featuring the stories of eight people connected to its Memory Support Programme (REMS), all of whom are living with neurodegenerative diseases.

Eight people. Eight lives. Eight different ways of facing a reality that none of us would choose.

The first voice to open the series is that of Domènec Reixach, actor, director, and cultural manager, one of the founders of Barcelona’s Teatre Lliure, who is currently living with Alzheimer’s disease. He speaks of memory as something we carry with us, and of what we lose of ourselves when it disappears. It is an idea that captures the true meaning of memory loss.

I have had the privilege of getting close to these stories and hearing them first-hand. And that is probably what has impressed me most: when the figures, diagnoses, and disease names disappear, what remains before you is simply a person telling you about their life. Their memories. Their fears. Their loved ones. What they still want to do. What they do not want to lose.

Some of these people know that their memory may change over time. They know there may come a moment when certain memories become blurred or disappear altogether. And yet they speak about it with a sense of naturalness, courage and, in some cases, even humour that is deeply moving. They do not hide what is happening to them. They integrate it into their lives and accept it.

And as you listen to them, something happens: for a few moments, you stop thinking about their illness and start thinking about yourself. About your life. The people you love. The conversations you have yet to have. All those moments we take for granted because we believe we will always be able to return to them.

That is why we need science to keep moving forward. We need researchers, neurologists, geneticists, and many other professionals working to understand these extraordinarily complex diseases, whose risk increases with age but which are not exclusive to old age.

In Spain, it is estimated that between 700,000 and 800,000 people are living with Alzheimer’s disease, according to data published in 2026 in the Revista Española de Geriatría y Gerontología. Published data:
https://www.sciencedirect.com/science/article/pii/S0211139X26000466

One of the voices working on the front line of this research is neurologist Dr Mercè Boada, co-founder and Medical Director of Ace Alzheimer Center Barcelona, and a member of the Board of Trustees of the Fundació Catalunya La Pedrera. After decades devoted to Alzheimer’s disease, Dr Boada believes that we are living through a particularly hopeful moment for research:

“Research is no longer a promise for the future; it is a clinical reality that compels us to act today.”

It is a statement that can also be read the other way around: science is advancing, but while it does, lives are being lived right now, and they need more than promises for the future.

Because the people who can best explain what it means to live with a neurodegenerative disease are those who wake up every morning and live with it. And also those who stand beside them. As Marta Torras, Director of the Dignified Ageing Area at the Fundació Catalunya La Pedrera, reminds us, a diagnosis does not erase a person’s abilities, interests, or plans. That is why it is so important that people can continue to do, decide, and share, especially during the early stages of the disease.

Perhaps that is one of the greatest lessons this project has taught me: behind a diagnosis there is never just a patient. There is a story, a family, a way of loving, and a whole life that continues unfolding. Even when some memories begin to fade, the bonds remain, as do the gestures, emotions, and everything that has been shared.

Because memory is extraordinarily important, of course. But perhaps we are not only our memories. We are also the mark we leave on others, the way we continue to love, and everything we still have left to live, say, and feel.

Link to the project “Veus que compten” (“Voices That Matter”) by the Fundació Catalunya La Pedrera:
https://www.fundaciocatalunya-lapedrera.com/es/noticias/dia-mundial-del-alzheimer-ponemos-personas-delante-del-diagnostico