“Not having to wait years before it is too late.”
That is how one person living with Alzheimer’s disease expressed what scientific progress means to them. It is a request for time, for a diagnosis early enough to plan, to act, and to choose.
For decades, the story of Alzheimer’s disease was one of clinical research disappointment. Today, that has changed.
Their words, and many others like them, came from a guestbook left open at the 37th Global Conference of Alzheimer’s Disease International (ADI) in Lyon this April. People living with the disease, and those who love them, were invited to write anonymously. Freed from the weight of identity, they revealed something the data alone cannot: what is at stake when a health system moves too slowly.
Before Time Runs out: Voices from Lyon
Beyond the data and policy frameworks, the human perspective brought through the voice of the AD community underscores why time is of the essence. What emerged was not a list of complaints but a chorus of hopes and expectations for a future of dignity and equity, and for the right to choose before time runs out.
One participant wrote about what early diagnosis would mean to them personally:
“The ability to take control and be in the driver’s seat – decide what my path looks like“.
Another framed it in collective terms:
“Knowledge is power – early diagnosis means more time to gain resources and build community“.
And running through nearly every entry was a question of fairness.
“Scientific progress should be for every affected patient, in the same way and with equal care“.
“It would be wonderful if innovation regarding diagnosis and access to treatment and care were equitable… we all require the right to live with dignity and respect“.
These are not abstract policy positions.
They are the lived priorities of the nearly 86 million1 people worldwide living with Alzheimer’s disease1 — for whom science is finally moving, and for whom the system, too often, is not.
The voice of people with Alzheimer’s disease and their loved ones must be heard, as a comment left by a participant underlines:
“I hope that voices of those living with dementia are heard”.
That journey − from early recognition to loss, and back again − is at the heart of “TODAY”, a short poem told in reverse, tracing one patient’s story from loss back to possibility. Early diagnosis is not merely a clinical milestone. It is the difference between a story that ends in silence and one that still has chapters to write.
“What we heard from our global community at ADI Lyon was unambiguous: people living with Alzheimer’s disease are not asking for miracles. They are asking for access to what already exists and transparent advice on options. That is a policy and a health system readiness question, not a scientific one − and the answer must come from governments and health systems, now.” − Chris Lynch, Acting CEO, Alzheimer’s Disease International.
From Dialogue to Policy Action
These voices reached Lyon at a moment of critical trajectory. New diagnostic tools and disease-modifying therapies are, for the first time, making earlier and more accurate diagnosis a clinical reality. Yet, across Europe, fragmented diagnostic pathways and rigid reimbursement schemes mean that scientific success in the lab does not yet translate into benefit for the people who need it most.
The Lilly-hosted symposium drew on the AD Atlas, a first-of-its-kind platform that brings together country-level insights on diagnosis, care pathways, policy frameworks, research and support systems from around the world. Its value lies in comparability. ADI CEO Paola Barbarino and experts from Brazil, Japan, and France used its evidence to show where healthcare systems lag behind international peers and where policy action is most urgent.
The session spotlighted a shared necessity: the need to evolve diagnostic and access pathways, ensuring that disease-modifying treatments are fully recognised and reimbursed by payers and health authorities. Equally urgent is addressing the stigma that still delays diagnosis, and ensuring that early diagnosis becomes a real and achievable option − enabling people to access care sooner − through structured, continuous care pathways that are coordinated, equitable and patient-centred, from the first consultation through to long-term support.
A Call to Action: early diagnosis, reimbursement and access
Stakeholders from Brazil, Japan and Europe united in a shared vision, to bridge the gap between scientific possibility and lived reality that requires immediate action across three interconnected priorities. The time is now to:
Invest in early diagnosis: the window of opportunity is narrow
Early diagnosis is the gateway to disease management. Systems must move toward identifying biomarkers (such as amyloid buildup) in the earliest stages of the disease, when intervention can still preserve the autonomy that patients themselves describe as “being in the driver’s seat.”
Modernise reimbursement schemes
In Alzheimer’s disease, late-stage care is far more expensive than early intervention2. Enabling people to access treatment earlier in the course of the disease − supported by reimbursement models that recognise the long-term socio-economic value of slowing decline − can ease pressure on health systems while delivering better outcomes for patients.
Close the access gap: innovation that does not reach all patients is not innovation
Access must not be a matter of geography or wealth. People living with Alzheimer’s disease are at risk of being left behind, creating strong inequalities across the globe. Investments are required to ensure that innovation reaches those who can benefit most from it and adds meaningful time to their lives.
Science is advancing. The voices are clear. The path is mapped. All that remains is the political will to ensure that every person living with Alzheimer’s disease can be diagnosed early, treated equitably, and supported fully wherever they live, whoever they are.
The time to act is not in the future. It is now.
The quotes featured in this article were collected anonymously by Lilly during the 37th Global Conference of Alzheimer’s Disease International (ADI), held in Lyon, France, April 14–16, 2026.
References:
[1] Gustavsson A, et al. (2023). Global estimates on the number of persons across the Alzheimer’s disease continuum. Alzheimers Demen
[2] Rasmussen J, et al. (2019). Why We Need Early Diagnosis. Degener Neurol Neuromuscul Dis.
Source:
www.euractiv.com