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The science has moved on. People with Alzheimer’s are now waiting for health systems to catch up before it’s too late

Alzheimer’s disease is entering a new era of diagnosis and care, yet European health systems are still moving as if patients have time to spare. They don’t. Professor Soeren Mattke outlines why Europe urgently needs the clinical pathways, capacity, and political will to turn scientific progress into equitable patient access.

Alzheimer’s disease is still too often treated by health systems as something that can wait. Yet the underlying biology tells a very different story. For someone in the early stages of Alzheimer's disease, the losses start small: a favourite hobby quietly dropped, a trip to the shops that feels harder than it should. To others, these changes may seem fine and part of normal aging. Inside the brain, the disease is already well underway biologically.1

“Alzheimer’s disease is still often regarded as a non-urgent problem by health systems,” says Professor Soeren Mattke, Research Professor of Economics at the University of Southern California and Director of the USC Brain Health Observatory. “But by the time patients reach mild cognitive impairment (MCI), their brain biology is already substantially altered.” 2,3

MCI may sound like a mild or manageable stage, but biologically, it isn’t. Inflammation in the brain is active, the brain’s ability to adapt is declining, and the irreversible spread of tau protein may already have begun.3

“The window during which we can still make a meaningful difference with current intervention options is narrowing fast,” Mattke warns.

Yet diagnosis continues to come far too late. Globally, up to three-quarters of people living with dementia may never receive a formal diagnosis.4 Even among those who do, the diagnostic journey can involve significant delays. In a progressive disease, such delays carry permanent consequences.5

Aligning Alzheimer’s disease with other chronic diseases

This reality demands a fundamental shift in how health systems evaluate both diagnosis and treatment.5

Mattke argues that Alzheimer’s disease is assessed against a different standard from other serious chronic conditions. In cardiovascular prevention, the value of an intervention lies in reducing the risk of a future event. Similarly, oncology treatments are routinely evaluated for their impact on overall prognosis, even when they do not provide immediate symptom relief.

The same principle should apply to Alzheimer’s disease, where innovations are too often dismissed because they do not produce instant symptomatic improvement. “Much of chronic care is about improving prognosis, not symptoms,” he notes.

Why should Alzheimer’s disease be held to a different standard than cancer or heart disease?

The infrastructure gap

The scientific landscape has shifted dramatically. Today, blood biomarkers and advanced biological diagnostics enable earlier detection than ever before.6

“The science has moved,” Mattke says. “The standards applied to it have not.”

This is the core policy challenge. In oncology, European health systems proactively built diagnostic pathways, referral networks, and delivery infrastructure while the science was still evolving. Decision-makers understood that standing still was not an option. Alzheimer’s now requires that exact same structural urgency.6,7

“We have scalable blood tests and approved management options,” Mattke explains. “What we still lack are the clinical pathways and coverage needed to give patients equitable access.” 5,7

The primary barrier is no longer scientific - it is systemic.

This challenge is underscored by Alzheimer Europe’s findings on the significant disparities across European countries regarding diagnosis rates, specialist availability, and access to disease-modifying therapies.8

To bridge this gap, health systems must establish clear routes from initial cognitive concern to specialist management. This requires a targeted policy framework centered on six key pillars: establishing early diagnostic pathways in primary care, expanding specialist capacity to eliminate bottlenecks, and creating integrated referral networks across all care levels. Furthermore, Europe must broaden diagnostic access for scalable tools like blood biomarkers, develop sustainable reimbursement mechanisms for long-term prognosis management, and enforce equitable delivery regardless of geography or socioeconomic status.6-9

Overcoming the evidence paradox

Some decision-makers remain hesitant, requesting more long-term outcomes data before committing resources or redesigning care pathways. While the desire for robust evidence is understandable, waiting creates a dangerous paradox.

“Some ask for more long-term evidence before committing,” Mattke says. “I respond: how will we generate it if we don’t provide care?”

Health systems cannot wait for real-world evidence while simultaneously withholding the care necessary to generate it. The solution is not to lower the clinical standards bar, but to build adaptive systems that learn as care evolves.7,9

Canada’s Drug Agency (CDA), the country’s health technology assessment body, offers a signal of what that adaptive approach can look like in practice. Rather than waiting indefinitely for additional long-term data, it moved to a positive evaluation of disease-modifying therapies based on the clinical evidence already available — precisely the kind of pragmatic, evolving assessment Europe now needs. Just as importantly, it listened to the people living with the disease.10 Patients described how Alzheimer's disease had taken away their independence, disrupted their plans, and robbed them of time, while caregivers spoke of exhaustion and strain. CDA recognized the unmet need that help people hold on to their daily lives for longer.

Mattke emphasizes that this gap is not a scientific problem, but a policy problem—and that policy problems require policy solutions. In his view, the knowledge and tools are already available; what is needed now is the political will to ensure equitable patient access.

Every year of delay means another patient missing their window of opportunity. For Alzheimer’s disease, the time to act is now.


References

  1. Cohen, S., Cummings, J., Knox, S. et al.Clinical Trial Endpoints and Their Clinical Meaningfulness in Early Stages of Alzheimer’s Disease. J Prev Alzheimers Dis 9, 507–522 (2022).
  2. Jack CR Jr, Andrews JS, Beach TG, et al. Revised criteria for diagnosis and staging of Alzheimer’s disease: Alzheimer’s Association Workgroup. Alzheimer’s & Dementia. 2024;20(8):5143–5169.
  3. Therriault J, Pascoal TA, Lussier FZ, et al. Staging of Alzheimer’s disease with tau PET. Nature Reviews Neurology. 2024;20:232.
  4. Gauthier S, Rosa-Neto P, Morais JA, Webster C. World Alzheimer Report 2021: Journey through the diagnosis of dementia. London: Alzheimer’s Disease International; 2021.
  5. Alzheimer’s Disease International, McGill University. World Alzheimer Report 2021: Journey through the diagnosis of dementia. London: Alzheimer’s Disease International; 2021.
  6. Hampel H, Au R, Mattke S, et al. Designing the next-generation clinical care pathway for Alzheimer’s disease. Nature Aging. 2022;2(8):692–703. doi:10.1038/s43587-022-00269-x.
  7. Ball DE, Mattke S, Frank L, et al. A framework for addressing Alzheimer’s disease: Without a frame, the work has no aim. Alzheimer’s & Dementia. 2023;19(4):1568–1578. doi:10.1002/alz.12869.
  8. Alzheimer Europe. Alzheimer Europe calls for equitable access to new Alzheimer's disease treatments across Europe. Position Statement, June 2026. https://www.alzheimer-europe.org/news/alzheimer-europe-calls-equitable-access-new-alzheimers-disease-treatments-across-europe.
  9. Weninger S, et al. Restrictive clinical pathways are preventing eligible patients from receiving approved DMTs. Alzheimer’s & Dementia: Translational Research & Clinical Interventions. 2024;10(4):e70015.
  10. https://www.cda-amc.ca/sites/default/files/DRR/2026/SR0929_Kisunla_Draft_Recommendation.pdf

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