On the occasion of the Brain Awareness Week, the European Brain Council (EBC) and the European Federation of Pharmaceutical Industries and Associations (EFPIA) launch the RETHINKING Alzheimer’s disease White Paper, calling for change in the detection and diagnosis of Alzheimer’s disease.

Alzheimer’s disease (AD), the most common form of dementia, is a progressive and debilitating neurodegenerative condition which robs people of their memory, their independence, their relationships and, ultimately, their lives. It affects close to 7 million people in the European Union (EU) alone. AD is a growing public health issue with a huge burden for European economies, national healthcare and social care systems and a concern for the future.

Currently, the detection and diagnosis of AD relies on a system that remains focused on the late stage of the disease, despite a better understanding of the disease progression. Clinical practice and healthcare systems’ readiness to detect, diagnose and treat the disease effectively are still lagging. While biomarkers are central to a diagnostic assessment for people with AD symptoms, the available detection and diagnostic tools such as cerebrospinal fluid tests (CSF) and positron emission tomography scans (PET), as well as relevant facilities are under-utilised.  

To remove the barriers to early detection (at a pre-clinical stage, where it is believed that a therapeutic intervention could potentially halt or slow disease progression overall), the most urgent actions required are to foster an increased general awareness of the population about AD, improve professional education, and reduce stigma. This must be accompanied by a healthcare systems transformation, where the primary care professionals will play a greater role. The infrastructure for detection and diagnosis should also be improved by matching healthcare workforce and services, by greater adoption, availability and access to biomarkers and by an increase in the number of specialists. The promising results of moving towards a more coordinated care management approach involving all strands of disciplines relevant to AD must also be considered.   

In addition, and in light of emerging detection and diagnosis modalities, as well as disease-modifying treatments (DMTs), more research on how biomarkers should be used for diagnosing AD in a clinical setting should be considered. Disclosing biomarkers results and related risk to people living with AD should also be improved. 

Lastly, instruments to enhance access to early diagnosis are patient registries and databases as well as national dementia plans. The former are key elements to better understand the disease and develop clinical research. They also improve the lives of people living with AD and their healthcare planning. The latter must be developed in concertation with all stakeholders to ensure they cover all priorities, including awareness raising, education, flexibility to take stock of innovation and dedicated funding for implementation.  

The policy recommendations gathered in this White Paper provide solid directions on how to rethink the detection and diagnosis of AD to help overcome the current challenges and be prepared to embrace innovation. 

The launch event of the RETHINKING Alzheimer’s disease White Paper, calling for change in Alzheimer’s care, will take place virtually on 24 January 2023 at 12:30 – 14:00.

About Alzheimer’s disease

Alzheimer’s disease (AD) is a neurodegenerative disease that progresses in stages, beginning with a long silent phase before symptoms occur. It is the underlying cause in 70% of people with dementia. Dementia, which is not a specific disease but an overall term that describes a group of symptoms, is characterised by a decline in memory, thinking, behaviour and the ability to perform everyday activities.

It is estimated that 9.7 million people in Europe alone already live with Alzheimer’s disease and dementia. With a rapidly ageing population, it is a growing public health concern worldwide as this number is projected to rise to a staggering 14 million by 2030.

RETHINKING Alzheimer’s disease: Detection and diagnosis

The European Brain Council (EBC), in collaboration with the European Federation of Pharmaceutical Industries and Associations (EFPIA), will present its White Paper “RETHINKING Alzheimer’s disease: Detection and diagnosis“. This paper is the first of EBC’s “RETHINKING Alzheimer’s disease” project, looking at how to improve the detection, diagnosis, care and monitoring of AD.

The White Paper is particularly looking at how to detect and diagnose the disease at an earlier stage (at mild cognitive impairment – MCI  – stage) and what new care pathways would need to be implemented to reach out to patients at that stage. With disease modifying treatments targeting patients with MCI potentially coming to market in the near future, it is also important to see how prepared healthcare systems are to provide these new treatments.  

You can look forward to a keynote speech on the value of an early diagnosis, a panel discussion featuring experts involved in the RETHINKING Alzheimer’s disease project, a policy panel with key stakeholders at the European Parliament and the European Commission and much more. Follow the EBC social media channels (Twitter, LinkedIn) and dedicated newsletter for all the latest updates – more information coming soon!

The launch event of the RETHINKING Alzheimer’s disease White Paper, calling for change in Alzheimer’s care, will take place virtually on 24 January 2023 at 12:30 – 14:00.

The European Brain Council (EBC), in collaboration with the European Federation of Pharmaceutical Industries and Associations (EFPIA), will present its White Paper “RETHINKING Alzheimer’s disease: Detection and diagnosis“. This paper is the first of EBC’s “RETHINKING Alzheimer’s disease” project, looking at how to improve the detection, diagnosis, care and monitoring of Alzheimer’s disease.

Moving Towards a new Alzheimer’s Disease diagnostic pathway in Europe

Our understanding of the progression of Alzheimer’s disease has improved significantly, leading to the development of advanced diagnostics and treatment approaches. To keep people living with Alzheimer’s disease in better health for longer, healthcare systems must be equipped to accurately diagnose the disease earlier and enable earlier access to treatment and support. 

We’re at a crossroads in the management of Alzheimer’s disease, with new potential treatments on the horizon. Current healthcare systems are not set up to diagnose and treat the condition early enough to realise the value of upcoming advanced therapeutics, and the benefits they could deliver for broader society.  

This must change now, with the support of clear policies that enable timely detection and timely clinical and accurate pathological diagnosis of Alzheimer’s disease. 

Rethinking the detection and diagnosis of Alzheimer’s disease

Join the discussion and learn why an accurate and timely diagnosis is so crucial to advancing the science and our understanding of Alzheimer’s. You can look forward to opening remarks from MEP Sirpa Pietikäinen (EPP, Finland) and a keynote speech highlighting the value of an early diagnosis from a patient perspective.

The keynote will be followed by a panel discussion, moderated by Laura Campo (Eli Lilly and Company), featuring experts involved in the RETHINKING Alzheimer’s disease project, Kristian Steen Frederiksen (European Academy of Neurology), Maria Teresa Ferretti (Women’s Brain Project) and Linus Jönsson (Karolinska Institutet). The panel will emphasise a clear need for new clinical pathways building bridges between all stakeholders to improve the current situation and prepare for the future.

The event will conclude with a high-level policy panel, moderated by Frédéric Destrebecq (European Brain Council), with MEP Tomislav Sokol (EPP, Croatia), MEP Deirdre Clune (EPP, Ireland), Andrzej Rys (Directorate-General for Health and Food Safety – DG SANTE, European Commission) and Dr. Neerja Chowdhary (World Health Organization).

Have your say on how to improve Alzheimer’s care

Practical information

Date: Tuesday, 24 January 2023
Time: 12:30 – 14:00 (Brussels time)
Location: livestream
Registration: Please register here

All participants must register before attending this event. Once registered, Zoom instructions will be sent via email closer to the date.