EBC & EFPIA launch RETHINKING Alzheimer’s disease White Paper

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.