Choosing Words – The Lexicon of Neurodegenerative Diseases
Yesterday, we attended Preserving the Brain: A Call to Action—a compelling roundtable on neurodegenerative diseases held at Fondazione Prada. This particular session delved into Choosing Words – The Lexicon of Neurodegenerative Diseases, highlighting the profound impact of language in the discourse surrounding these conditions.
The latest edition of Preserving the Brain, a crucial part of the Human Brains project—Fondazione Prada’s ongoing commitment to neuroscience since 2018—focuses on the prevention of widespread yet still incurable neurodegenerative diseases, including Alzheimer’s, Huntington’s, Parkinson’s, Amyotrophic Lateral Sclerosis, and Multiple Sclerosis.
In collaboration with fifteen leading neuroscience institutes from international universities and six Italian patient organisations, Preserving the Brain: A Call to Action features a scientific conference (16–17 October 2024), an exhibition (16 October 2024–7 April 2025), and a series of meetings (November 2024–April 2025), all hosted at Fondazione Prada in Milan.
The power of words in the context of disease
This edition of Preserving the Brain examines how language shapes our understanding of neurodegenerative diseases. It addresses communication at multiple levels: from the intimate realm of the family to broader societal concerns, including patient rights, diagnosis disclosure, and the promotion of preventive measures.
A commendable initiative by Miuccia Prada ensures that Cinema Godard remains freely accessible for discussions on these critical topics, reinforcing the foundation’s role in bridging culture and scientific discourse.
Words matter: rethinking communication in medicine
“Cultural transformations arise from the words and ideas they conceal,” remarked Paola Zaratin, opening a dialogue with virologist Professor Roberto Burioni (Vita e Salute University, San Raffaele, Milan) and Professor Alessandro Padovani (University of Brescia), President of the Italian Society of Neurology. Their discussion centred on the communication of prevention and the urgency of preserving brain health before the onset of disease.
A particularly striking moment was the quasi-mea culpa of medical professionals regarding their use of language when addressing patients. Professor Burioni highlighted an unsettling reality: the words used today are often careless and imprecise. “Today, sloppiness prevails” – Burioni said.
“The first word that matters is beauty. Even in the most serious conversations about health, words must be beautiful. If they are not, they alienate. The second crucial word is utility—words are not mere breath; they have consequences, shaping lives. This is why they must be chosen carefully, without negligence.”
Another pressing issue raised by Burioni was the erosion of trust in scientific communication. He pointed out the necessity of distinguishing between facts and opinions, cautioning against the human tendency to believe what aligns with personal desires rather than objective reality.
“Despite overwhelming scientific evidence, many still believe vaccines cause autism. Even in the case of the HPV vaccine, which drastically reduces the risk of cervical cancer, nearly 60% of parents refuse it. Our responsibility is not only to use comprehensible language but also to ensure that our words convince—reinforcing the undeniable truths of science and medicine.”
A new lexicon for neurodegenerative diseases
Professor Padovani proposed four essential words in the context of neurodegenerative diseases:
Creativity – connecting science, art, and fashion, disciplines that find common ground, as seen in this round table at Fondazione Prada.
Contamination – interdisciplinary learning: neurologists learning from virologists, both relying on engineers to decode the vast data patients generate through modern diagnostic tools.
Sociality – recognising that the brain is inherently social, and global health hinges on fostering social bonds.
Social Capital – acknowledging that brain health is a collective responsibility, one that must be preserved for the benefit of all.
“One brain, one health.”
The role of cultural institutions in scientific communication
In an era where social media dictates the narrative of science and medicine, institutions like Fondazione Prada play an essential role as trusted mediators, ensuring that scientific knowledge is effectively communicated to the public. As Paola Zaratin, Director of Scientific Research at FISM, noted:
“Cultural institutions can act as guarantors of scientific communication, fostering a dialogue that connects citizens with the realities of contemporary medicine.”
The lexicon as an advocacy tool
The second roundtable of the event explored the lexicon of neurodegenerative diseases as a tool for advocacy. Discussions centred on the role of language in private and family settings and its function in public communication, particularly concerning the transmission of diagnoses.
We deeply appreciated the insights of Graziella Sirabian, Psychotherapist and Neuropsychologist at ACeSM onlus Friends of the Multiple Sclerosis Centers, on the psychologist’s role as a mediator between doctor and patient in delivering life-changing diagnoses.
“When it is necessary to communicate a diagnosis that will change people’s lives, it is important that the doctor draws not only on his certainties, on what science says, on what he knows for sure, but also that he is not ashamed to draw on his own fears, his own fragilities, because this allows him to empathize with frightened and scared people and to truly help them understand what the diagnosis entails and to understand that life does not end at that moment, but can continue in an authentic way”.
Specifically, she emphasized that doctors should not rely solely on scientific certainties but also embrace their own fears and vulnerabilities. This, she explained, fosters empathy, helping patients understand their diagnosis and see that life continues in a meaningful way.
However, all the speakers paid tribute to Professor Giancarlo Comi, a visionary in the field who recently passed away. In fact, his pioneering work in emphasising the importance of preserving brain function has left an enduring legacy. As Graziella Sirabian noted, he believed in the role of psychologists at a time when psychology was still the ‘Cinderella of medicine.’
By the way, on the theme of fashion and disability, you can read our personal story here.
Our takeaways
• Care – In its etymological sense: an attentive and engaged interest that involves both the intellect and the soul.
• Person – Before being a patient, an individual remains a person. No diagnosis should erase their humanity.
Final thoughts
This event reaffirmed an essential truth: the words we use in the context of disease are not neutral. They have the power to alienate or to heal, to obscure or to enlighten. As we move forward, a conscious effort to refine our lexicon is not just a linguistic exercise—it is a moral imperative.
Moreover, Preserving the Brain at Fondazione Prada demonstrates how fashion itself can serve as a powerful cultural vehicle, fostering meaningful discussions on critical issues such as neurodegenerative diseases.