Rethinking Alzheimer’s disease (AD) is a research-driven project offering policy recommendations to make tangible changes with the aim to improve the lives of people living with Alzheimer’s disease across Europe.

Alzheimer’s disease 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 7 million people in Europe alone already live with Alzheimer’s disease. 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.

The societal and economic cost of dementia in Europe is also very high and estimated to increase over EUR 250 billion by 2030 (with over 50% of this due to informal care costs), the equivalent of the whole GDP of Finland. AD is thus not only a debilitating and progressive disease affecting the daily lives of people, their families and carers, but also a huge burden for our economy and European nations’ healthcare and social care systems. Healthcare systems in Europe currently lack the capacity to detect, diagnose and treat AD effectively.

EBC and EFPIA collaborate with experts from different European countries to build an interdisciplinary consensus around practical and sustainable policy responses to Alzheimer’s disease that aim to improve the lives of countless people affected.

Now is the time to rethink Alzheimer’s disease to improve Alzheimer’s disease care pathway and the lives of people living with it.

On the occasion of the Brain Awareness Week 2023, the European Brain Council (EBC) and the European Federation of Pharmaceutical Industries and Associations (EFPIA) launched the Rethinking Alzheimer’s disease White Paper, calling for change in the detection and diagnosis of Alzheimer’s disease. 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. 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 objective of the technical report ‘Economic evaluation of the implementation of Blood-based biomarker (BBBM) tests for the early diagnosis of Alzheimer’s disease at primary care level in the Swedish healthcare setting‘ was to assess the health economic impact of some of the solutions identified during the consultations with the expert working groups which are described in the White Paper.

We are at a historical crossroads in the management of Alzheimer’s disease, with new treatments becoming available in various countries. For the first time in history, science is delivering new, potentially disease-modifying treatments for devastating diseases such as Alzheimer’s disease. However, the current healthcare system and regulatory frameworks do not easily allow the implementation of such innovations, even for the subset of people living with Alzheimer’s who would be eligible.

The ‘Rethinking Alzheimer’s Disease: From Diagnosis to Care’ Perspective Paper was launched in September 2024 on the occasion of World Alzheimer’s month. This Perspective Paper does not merely document the status quo but challenges it – motivating the reader to rethink how Alzheimer’s Disease is addressed. By offering a comprehensive review of current practices, identifying gaps and barriers, and proposing policy recommendations, this report seeks to reshape the Alzheimer’s disease healthcare pathway in ways that enhance outcomes and quality of life for all involved, and thereby reduce the impact on society.

In order to bring to life this ‘Rethinking Alzheimer’s Perspective Paper’, EFPIA and EBC organised an event at the European Parliament on 3rd of December 2024. The aim of this event was to convene key stakeholders in the field of Alzheimer’s Disease and to rethink how we approach Alzheimer’s Disease treatment, care and management and shape the future of brain health in Europe.

The European Brain Council (EBC) is a network of key players in the “Brain Area”, with a membership encompassing scientific societies, patient organisations, professional societies and industry partners. A non-profit organisation based in Brussels, its main mission is to promote brain research with the ultimate goal of improving the lives of the estimated 179 million Europeans living with brain conditions, mental and neurological alike.

The European Federation of Pharmaceutical Industries and Associations (EFPIA) represents the biopharmaceutical industry operating in Europe. Through its direct membership of 37 national associations, 38 leading pharmaceutical companies and a growing number of small and medium-sized enterprises (SMEs), EFPIA’s mission is to create a collaborative environment that enables our members to innovate, discover, develop and deliver new therapies and vaccines for people across Europe, as well as contribute to the European economy.

To help improve the quality of life and care for people living with AD in Europe, the following organisations endorse the RETHINKING Alzheimer’s disease White Paper, including the call to action and policy recommendations.

The project “RETHINKING Alzheimer’s disease” is supported by the European Federation of Pharmaceutical Industries and Associations (EFPIA). All outputs are non-promotional and not specific to any particular treatment or therapy.