Evidence, research and community-building - my Swiss Dementia Forum experience

We say in stroke that every minute counts. But in neurodegeneration, time is just as essential.

A few weeks ago I had the honor of attending the Swiss Dementia Forum, the first of its kind, an event that reunited researchers, clinicians, patient representatives, pharma, and private companies to map the ecosystem of dementia research, with a focus on Switzerland.

My intention was to get a clearer sense of current dementia care, strengthen my understanding of the condition, and consider needs from a Romanian perspective.

I’ll be sharing here some of my personal insights and take-ons from the conference.

Early implementation of amyloid-targeting therapies in clinical practice: the UCSF experience

During the first day, I had the chance to hear Dr. Gil Rabinovici from UCSF share from their experience in implementing amyloid-targeting therapies in clinical practice.

As a reminder, he United States FDA granted accelerated approval of Lecanemab for early Alzheimer’s disease in January 2023. Lecanemab is on-market (for the indicated population) with evolving dosing/formulation options.

The regulatory path in the EU was more protracted, with initial reservations. The European Medicines Agency (EMA) Committee for Medicinal Products for Human Use (CHMP) initially recommended against approval in July 2024 (citing low benefit vs. risks) but after re-examination recommended approval in November 2024.

On 15 April 2025 the European Commission granted marketing authorization in the EU (for early Alzheimer’s disease, mild cognitive impairment, or mild dementia due to Alzheimer’s) under strict conditions, specifically, for patients with confirmed amyloid β-plaque pathology and who are either non-carriers or heterozygous carriers of the ApoE ε4 gene because of risk mitigation. The first EU countries (Austria and Germany) began the rollout in August/September 2025.

Although the UCSF has made progress on advancing amyloid targeting therapies, trial criteria and appropriate use recommendations cannot really anticipate the complexity of real-world patients.

ARIA risk factors still remain and mitigating them is an important safety consideration, through careful patient selection and monitoring and multi-specialty collaboration is key.

(📖: 1, 2, 3)

Blood-Based Biomarkers: The HbA1c of Dementia Diagnosis?

Dr. med. Ansgar Felbecker, from Inselspital Bern and Neuro im Zentrum St. Gallen, walked us through the dementia diagnostic pathway at the Memory Clinic in Bern, the biomarkers used in clinical routine, the AD biomarkers that will be implemented in the close future, and current investigations in blood biomarkers that are being tested.

Amyloid can quietly build up in the brain for as long as 20 years before you notice any symptoms - one reason early testing and blood biomarkers really matter. (📖: 1, 2)

Today, the most certain tests for Alzheimer’s involve:

• Lumbar punctures (spinal taps)

• PET scans that look for amyloid or tau in the brain

  
  

These tests work well, but they are invasive, costly, and not easy to offer to everyone.

New blood tests are changing this. They aim to become the “HbA1c of dementia” - a simple blood draw that gives powerful information about what’s happening in the brain. Many studies show that these blood tests can detect Alzheimer’s-related changes almost as accurately as spinal taps or PET scans. A couple of them already have FDA clearance as tools that can help doctors with diagnosis. (📖: 1, 2, 3)

However, they are not yet used as routine screening in primary care, and they don’t fully replace spinal taps or PET scans when a diagnosis is unclear or complicated. (📖: 1)

In both the US and Europe, blood-based biomarkers - especially Aβ42/40, phosphorylated tau (like p-tau181, p-tau217, p-tau231), and neurofilament light chain (NfL) - are developing quickly. They are widely used in research and are slowly beginning to appear in clinical care, mostly in the US.

(📖: 1, 2, 3)

My highlights from the poster exhibition

One of the posters that drew my attention was this one: “Slow wave–spindle coupling during deep sleep is selectively linked to Plasma Amyloid-β levels in Older Adults,” authored by Marina Wunderlin, Korian Wicki, Charlotte Elisabeth Teunissen, and Marc Alain Züst.

This study explored how deep sleep patterns relate to amyloid-β, a protein linked to Alzheimer’s disease, in older adults.

During deep sleep, the brain produces slow waves and sleep spindles - two important types of activity. Slow waves happen in the deepest stage of sleep. They help the brain flush out waste, including amyloid-β, and support memory. Sleep spindles are quick bursts of activity that help the brain store new memories. They normally occur at just the right moment within a slow wave. (📖: 1, 2, 3)

As we age, these rhythms become less coordinated. The timing between slow waves and spindles can shift, and this misalignment is linked to memory problems, brain aging, and higher risk of cognitive decline.

A key finding of the study is that the quality and coordination of deep-sleep brain rhythms can predict future dementia risk better than age, total sleep time, or cognitive tests.

It’s not just how much you sleep, but how well your brain rhythms are synchronized during deep sleep.

Because these sleep changes can appear years before symptoms, tracking sleep patterns may offer an early, noninvasive way to detect brain health problems.

The study also tested acoustic stimulation -gentle sounds played during deep sleep. This treatment strengthened slow waves, improved the timing between slow waves and spindles, and was linked to better amyloid-β responses, especially in people with cognitive impairment.

This suggests that improving deep sleep through safe, drug-free methods could become a promising tool for prevention and brain support.

My poster contribution

For my poster, I chose to approach dementia not only through the lens of science, but through sociology and language - and revealing how deeply words shape our understanding of illness, identity, and possibility.

Coming from a background in communication and social science, I have long believed that language constructs reality. We speak things into imagination long before they exist in practice. So I asked this simple question:

How do people newly diagnosed with dementia - and their care partners - experience the word “dementia” itself?

The term “dementia” has roots in Latin meaning “away from mind,” and it carries centuries of stigma, fear, and assumptions of irreversible decline. (📖: 1)

Even today, this linguistic legacy influences how society responds to dementia, how clinicians frame treatment, and how individuals imagine their own futures. It even affects adherence to treatment and willingness to seek care early.

The word “dementia” can really be frightening for patients and care partners, especially when symptoms aren’t yet visible or when the person has always been highly cognitively active. It can create an immediate sense that nothing can be done.

But medical science has progressed since 1906, when Alois Alzheimer identified amyloid plaques (📖: 1) - we now understand spectrums, subtypes, biomarkers, and even modifiable risk factors - but our terminology has not evolved with it. We are still using a word shaped by an outdated worldview.

My poster explores the psychological, social, and cultural consequences of this mismatch. Drawing on neurolinguistics, health psychology, and patient-centered care, I examined how terminology shapes treatment engagement, caregiver expectations, research funding decisions, and public health messaging.

In my poster, I have also presented case studies from other fields where updated terminology led to meaningful shifts in policy, research, and dignity - such as replacing “mental retardation” with “intellectual disability” through Rosa’s Law (📖: 1), or reframing “Asperger’s Syndrome” within Autism Spectrum Disorder (📖: 1).

Potential alternatives might include “neurocognitive condition,” “cognitive health challenge,” or pathology-specific terms that describe what is happening in the brain rather than implying a loss and a sense of inevitability.

While I do understand that the terminology isn’t meant to stigmatize - especially in clinical and research settings - and it is just a more practical, easy use of words for clinicians than saying something longer like “cognitive health challenge”, sometimes I wish we could use language that better reflects what we now know.

That cognitive decline exists on a spectrum (📖: 1, 2)., that some aspects are modifiable, and that people deserve terminology that doesn’t strip away hope. A shift in language wouldn’t erase the medical reality, but maybe it could soften the emotional burden and open the door to earlier engagement, more empowering care and understanding of brain health.

My poster invited attendees to reflect on what the word “dementia” evokes for them - its emotions, connotations, and lived meaning - and to participate in an ongoing study exploring these perceptions. Anyone who has walked alongside someone with dementia knows the weight carried by a single word. I am looking to further learning from the readers of this post if this resonates.

Developing Patient-Centered and Ethical Dementia Research

Dr. Kelly Ormond from ETH Zurich emphasized the importance of supporting people’s autonomy in decision-making and involving them directly in dementia clinical trials whenever possible. She highlighted that caregivers should understand the person’s wishes as fully as they can, because honoring those preferences is an essential ethical responsibility. I fully agree with that - I think we all want our decisions to be honored and our viewpoints considered, whenever possible and for as long as we are able.

Forgetting as a Form of Learning

Professor Tomas Ryan, from Trinity College Dublin, Ireland, brought an interesting perspective rooted in neuroscience.

He started his speech with a provoking question:

What do we know about memory, memory formation, and forgetting?

His speech was based on new research he carried out with his team around memory engram competition. The research argues that forgetting isn’t a failure of memory but a smart, adaptive process. The brain keeps memories, but they may temporarily become harder to access because other memories compete with them.

It suggests that memory drift may represent competing engrams gradually shifting which one gets chosen for recall; and this is normal, and helps with learning updated information. This framework helps explain why forgotten memories can sometimes be recovered, but also suggests new avenues for treating diseases like Alzheimer’s. And most importantly, it highlights the importance of memory flexibility in a changing world.

One interesting (and also emotional) point Prof. Tomas Ryan made was the parallel between East and West Berlin: that even though the borders have faded over time, what we choose to forget still leaves traces. Some things remain encoded in us, even when we think they’re gone.

I went on further this line of research and asked myself a question at the intersection of psychiatry and neurology:

If some memories’ retrieval can be blocked or distorted, for example, by affective load, trauma-associated networks, then shouldn’t trauma-focused work be prioritized before (or alongside) memory-based interventions?

The speech was so interesting, but also emotional, because it reminded me of what science can do and what its true role is: hope-making. Even when we think we fully understand a condition, science continues to reveal new insights, new paths forward, and new possibilities.

And it was interesting from another point of view: that when we unite different disciplines: neurology, neuroscience, computational science, social and cultural perspectives, we expand what we understand and what we imagine possible.

I left the conference smiling, because, even if treatments are not quite there, there are still so many reasons to feel encouraged. The science is advancing, early detection is improving, the momentum, collaboration, and the different lens looking at this field make the future feel hopeful.

I left hopeful that I will be able to put into practice what I’ve learned, help connect the diverse ccosystems I am involved in, and promote research and prevention through meaningful translational and cross-region collaboration.