The European Brain Council (EBC), in collaboration with the European Federation of Pharmaceutical Industries and Associations (EFPIA), is very pleased to launch the “Rethinking Alzheimer’s Disease Pathway: From Diagnosis to Care” Perspective Paper on the occasion of the World Alzheimer’s Month. The aim of this report is not merely to document the status quo, but to challenge it—to rethink how we approach Alzheimer’s treatment, care and management. By offering a comprehensive review of current practices, identifying challenges, 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 reduce the impact on society.

About Alzheimer’s Disease 

Millions of Europeans will develop Alzheimer’s disease in the next decades. Already more than 55 million people (of which two thirds are women) currently live with dementia worldwide, whereof Alzheimer’s is the most common form (60–70% of cases). While Alzheimer’s disease is often considered a devastating disease against which nothing can be done, society is now entering an era where we start to rethink Alzheimer’s as a treatable and manageable condition.  

Alzheimer’s disease is characterised by slow and progressive loss of nerve cells in the brain resulting in the impaired formation of new memories, difficulties with language and processing of images, and decline in executive function –the capacity of going through a series of steps, like following a recipe to cook a meal or booking a flight online. Alzheimer’s symptoms also include behavioural alterations such as apathy, irritability or even aggressive behaviour. 

Rethinking Alzheimer’s Disease Pathway: From Diagnosis to Care

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. Yet, the current healthcare system and regulatory and policy frameworks do not easily allow the implementation of such innovations, even for the subset of people living with Alzheimer’s who would be eligible.   

Now is the time to make sure that the post-diagnostic care pathway is optimised to the person needs and that the healthcare systems in each country are properly harnessed and informed to provide the most appropriate treatments to the right patient at the right time.   

For this reason, we call on policymakers to drive regional, national, EU, and international policies that can help to improve the lives of people living with the disease, define a post diagnostic pathway through sufficient guidelines and funds allocated for optimal implementation, which will also improve alignment and harmonisation of the pathways across the countries. We need to ensure that health systems are better prepared to support the post-diagnostic pathway now, and when innovative tools and therapies become available.  

RETHINK Alzheimer Perspective Paper_DEF_HD_pages

Call to Action: 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.