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.

A Perspective Paper, a collaborative effort between the European Federation of Pharmaceutical Industries and Associations (EFPIA) and the European Brain Council (EBC), has been 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 – and thereby motivates 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.

RETHINK Alzheimer Perspective Paper_DEF_HD_pages

The event kicked off with a warm welcome by host MEP Tsvetelina Penkova (S&D, Bulgaria), who emphasised the importance of such efforts and highlighted that much work is still necessary regarding the Alzheimer’s Disease diagnosis and care pathway. These efforts should not remain in the walls of the European Parliament, but also trickle down all the way to all EU member states. For this reason, MEP Penkova invited Kristiya Ivanova, a volunteer expert from the Alzheimer Bulgaria Association, to join and speak at this event.

Helen Rochford-Brennan, a patient advocate, shared her experience of living with Alzheimer’s Disease during her keynote speech titled ‘Embracing Life Amidst Alzheimer’s: Finding Purpose, Joy and Connection’. Helen is a Global Dementia Ambassador and vice-chair of the Irish Dementia Working Group, as well as a member of the European Working Group of People with Dementia. She guided us through her journey from the moment she was first diagnosed, how her family and friends reacted to the news, to how she now successfully copes and finds joy in each day, despite her diagnosis. Her keynote speech illuminated the journey of living with the disease: ‘For me, peace came when I stopped fighting the disease and learned how to live with it’.

A brief presentation on the key takeaways of the Perspective Paper by Frédéric Destrebecq, EBC Executive Director, then followed. Dementia costs global economies 1.2 trillion euros in 2019 – with 50% of this considerable sum attributed to informal caregiving. These numbers indicate that change is urgent, as early and effective treatments could help reduce these costs and alleviate burdens on families and caregivers. Key priorities include well-defined post-diagnostic pathways, funding, timely access to treatments, and high-quality care – prompting the need for a shift from late-stage care to early-stage active treatment and management. Society must rethink its approach to Alzheimer’s Disease, ensuring scientific progress translates into improved lives for patients and families.

Keeping these key priorities in mind, an Expert Panel Discussion brought to light the perspective of patient, caregiver, researchers and neurologists on how Alzheimer’s affects everyone involved, at a personal and societal level. The experts shared examples of successful support systems and impactful interventions. Moderated by Laura Campo, Executive Director International Corporate Affairs at Eli Lilly and Company, this panel included:

  • Ron Handels, Assistant Professor, Alzheimer Centre Limburg Maastricht University
  • Argonde van Harten, Medical Specialist in Neurodegeneration, Amsterdam UMC
  • Hassan Fadli, Founder of 5 Ironmans Beat Alzheimer’s Initiative
  • Helen Rochford-Brennan, Vice Chair, Irish Dementia Working Group

Next, the policy panel provided insights from policymakers, a neurologist and a patient representative on the need to prioritise holistic care and integrating therapies to Alzheimer’s Disease. Moderated by Katerina Valkova, Associate Director European Public Policy at Bristol Myers Squibb, this Policy Panel included:

  • MEP Tomislav Sokol (EPP, Croatia)
  • MEP Tomáš Zdechovský (EPP, Czech Republic)
  • MEP Maria Walsh (EPP, Ireland)
  • Sebastiaan Engelborghs, Full professor of neurology and neurosciences at Vrije Universiteit Brussel
  • Kristiya Ivanova, Volunteer Expert, Alzheimer Bulgaria Association

Prof. Sebastiaan Engelborghs highlights a significant disparity in funding between dementia care and research, noting that expenditures on dementia care often exceed those for research by more than four times. This imbalance is astounding and further emphasises the economic impact and burden of dementia on society. When compared to other diseases such as cancer, dementia research receives disproportionately less funding relative to its societal impact. Despite its growing prevalence and cost to society, dementia is not receiving the attention it so urgently needs. MEP Tomislav Sokol outlined the scope and limitations that Members of the European Parliament (MEP) can have. For instance, while MEPs cannot directly implement healthcare laws in individual member states, they can advocate for expedited market access for certain pharmaceuticals. This insight is particularly relevant for rapidly developing dementia treatments, highlighting the need for ongoing efforts to improve patient access to innovative therapies.

The successful event concluded with an interactive networking lunch, connecting speakers and attendees in the room. Discussions across sectors are critical in order to keep Alzheimer’s Disease high on the policy agenda. By facilitating the interaction between key stakeholders, scientists, and society as a whole this event in the European Parliament added immensurable value to the Rethinking Alzheimer’s disease project.

All Photographs were taken by Sylvain Crasset, more pictures can be found here!

Call to Action From the Perspective Paper: Policy Recommendations

  • National level: Implement and support the development of national AD/dementia strategies based on clearly defined KPIs following WHO’s guidelines, Sustainable Development Goals (SDGs) and recommendations from people living with AD, clinicians, health professionals, researchers, carers and civil society. 
  • European Commission (EC) level: Coordinate the AD/Dementia national strategies under an overarching EU policy framework with dedicated funding. 
  • EC level: Create a subgroup on Dementia within the EU’s Expert Group on Public Health to define clear guidelines, establish a roadmap and identify best practices. 
  • EC & European Parliament (EP) level: Ensure that AD and dementia are considered in all aspects of policymaking, by involving all relevant parties in the design and monitoring of policies and expanding the cooperation between units of the EC. 
  • EP level: Support transversal approaches aiming to tackle (or better address) AD/dementia in the broader context of neurological and mental disorders through holistic and coordinated policy efforts. 
  • EP level: Increase political leadership on AD/dementia by designating Brain Health Ambassadors within the EP. 
  • International level: Continue the work made in the context of the WHO (World Health Organization) Global Action Plan on Dementia to seek its full implementation at the national level (Alzheimer’s Disease International, 2024) and prioritise the extension of this global instrument, due to expiration in 2025, and enshrine diagnostics, treatment and care at the heart of all National Dementia Plans (Alzheimer’s Disease International, 2024). 

  • Raise awareness about AD at national and EU level to reduce stigma. 
  • Foster and support educational and awareness campaigns in society and among HCPs at national and EU level about early detection of AD, access to diagnostic centres, and the benefits of the post-diagnostic care across the EU through existing funding and educational mechanisms. 
  • Provide ongoing training for healthcare professionals on the latest AD findings including early detection and treatment options. 
  • Increase available training and educational programming for primary care providers to support them in taking a greater role in monitoring treatment effect and detecting and addressing adverse events, like Amyloid-related imaging abnormalities (ARIA).  
  • Increase awareness and education in the society and among HCPs alike (on topics such as the difference between AD and normal ageing, AD and dementia, etc.) to tackle barriers in access to both diagnostic, treatment, and care.  
  • Expand possible training offered to other members of Public Administration (i.e., 1st responders, volunteers, police & fire services, etc.).  
  • Ensure that a module on dementia care is included in clinical and research curricula.  

  • Support a precision medicine approach based on biomarkers and predictive algorithms for treatment response (that consider both efficacy and safety). 
  • Facilitate exchange of best practices among member states in order to develop initiatives such as: EU Joint Actions on AD, EU AD registry, and monitoring based on a standardised set of statistics to regularly report for each country as an epidemiological surveillance of AD. 
  • Implement electronic health records (EHR) to streamline person living with AD data sharing and improve coordination of care. 
  • Initiate registries of family members and people diagnosed with AD. 
  • Develop and implement standardised protocols for the administration of DMTs (Disease Modifying Treatments) and monitoring of ARIA across excellence centres. 
  • Utilise big data and artificial intelligence (AI) to predict patient needs and optimise resource allocation for MRI units and infusion centres. 
  • Implement EHR to streamline patient data sharing and improve coordination of care (e.g., Involve clinicians, researchers, patients and carers in the implementation of the EHDS). 

  • Ensure the pathway model is flexible enough to give people living with AD equitable access to innovation and dedicated funding to reimburse the treatment and care pathway (e.g., through the implementation of policies that ensure all people living with AD, regardless of socioeconomic status, have access to innovative AD treatments).  
  • Provide reimbursement for people who cannot afford expensive treatments and MRI scans. 
  • Support the implementation of a structured and sustainable care pathways supported by clear guidelines and taking stock of innovative tools and therapeutic innovation. 
  • Optimisation of the innovative treatment delivery (i.e., increase the number and/or potentiate existing AD centres for the optimal care pathway in the post-diagnostic journey of AD patients). 
  • Increase infusion capacity for treatment delivery. 
  • Increase capacity for treatments monitoring. 

  • Ensure that Member States, the EC and private sector allocate sufficient funding to make the most of a coordinated efforts and approach to accelerate the development and distribution of innovative treatments (e.g., Innovative Health Initiative, European Partnership on Brain Health, Healthier Together initiative). 
  • Ensure that funding adequately matches the health, economic, social, and research challenges posed by AD and dementia (e.g., increase the funding for AD clinical trials, which are currently mostly run in the USA, not European context). 
  • Collaborative AD health system and implementation-focused research effort (e.g., Davos Alzheimer’s Collaborative (DAC) looking inter alia at health systems preparedness and building on the findings of the DAC Learning Laboratory, World Dementia Council (WDC), World Health Organization (WHO) Global Action Plan on the public health response to dementia 2017-2025, Global Dementia Observatory, Intersectoral global action plan on epilepsy and other neurological disorders 2022-2031Renew the EU4H-2023-PJ-04 call with increased funding to further ensure that recommendations trickle down at national level and are implemented). 
  • Advocate for the increase in funding from governmental and non-governmental organizations to support AD research and infrastructure development. 

  • Involve people living with AD, their carers, and their healthcare professionals to work alongside ministries of health, social affairs, education, research, industry to develop and allocate relevant funding to the plan. 
  • Involving people living with AD and their carers in the design and development of new clinical pathways, to ensure they are accessible, inclusive and patient-centered. 
  • Educate and raise awareness of patients and caregivers about the importance of regular monitoring and adherence to treatment plans.  
  • Integrate the voice of patients in the design of trial and especially endpoints. 

  • Form multidisciplinary teams including neurologists, radiologists, nurses, psychiatrists, geriatricians, nutritionists and primary care physicians to provide comprehensive care (Gauthier et al., 2022).  
  • Call for the introduction of a skilled navigator designed to keep the person living with dementia at the heart of decision making by this multidisciplinary teams (Gauthier et al., 2022).  
  • Potentiate psychosocial care for AD patients. 
  • Use telemedicine to facilitate regular consultations and follow-ups, especially for people living with AD in remote locations. 
  • Support a shift from care to active treatment, increasing the use of large multi-specialty practices. 

  • Fund and support the implementation of information-sharing mechanisms at all levels of the care pathways, from the caring team to the decision-making level. This will improve alignment and harmonisation of the pathways across countries.