Optimising Alzheimer's disease health care pathways across Europe

Despite the challenges and barriers across European health systems in the timely detection and accurate diagnosis of Alzheimer's disease, policymakers have a unique opportunity to be remembered for improving the AD care pathway and transforming the way the disease is managed.

When her colleagues noticed something was not quite right with Marguerite Keating, their concern spurred her to visit the memory clinic. There, Marguerite was told she most likely had dementia and was advised to give up work and the things that gave her life purpose. When Marguerite most needed it, the healthcare system failed to support her.

We were fortunate to hear first-hand from Marguerite, who is a member of Alzheimer Europe's European Working Group of People with Dementia, during the Eli Lilly-sponsored symposium, "Optimizing Alzheimer's disease health care pathways today: best practices in action" at the recent Alzheimer Europe Conference in Helsinki, which also featured symposia run by EFPIA and PAVE. Events such as this allow us to hear from people like Marguerite and explore how our health systems can prepare for an ageing population where Alzheimer's disease (AD) will continue to be a prominent issue.

With the 2025 deadline for the World Health Organization's (WHO) global action plan on the public health response to dementia looming, it is more critical than ever for policymakers to take action to improve outcomes for AD patients by increasing awareness, addressing gaps in diagnosis and care, and reducing the burden of AD. Collectively, we have the opportunity to be remembered for making meaningful change in AD care.

Awareness and activation

Fear of AD can act as a barrier to early diagnosis by preventing people from seeking help when they first see signs of the disease. Considering that early diagnosis impacts a patient's eligibility for timely therapies that could help slow the decline of memory, there is a real need to change this narrative. Patients should be empowered to pursue a diagnosis without fear or shame, while healthcare professionals should be equipped with the knowledge and tools to provide one.

During the symposium, we heard insights from Jane Mahakian, founder and president of Alzheimer's Care Armenia. Jane and her team started a programme called the Brain Health Project, a mobile memory screening and training programme that addresses the stigma associated with AD.

Over the span of a year, Jane's team successfully screened 4,300+ patients as part of their efforts to shift the mindset around the disease. Through creating a popular radio show about brain health, they began to redefine what it means to be an older person in Armenia and increase awareness about brain health and AD. The team was also able to build relationships with clinics, hospitals, and primary care physicians to train them on the basics of AD and screening, helping to reduce the stigma and build diagnostic capacity in Armenia.

Timely and accurate diagnosis

Once a patient presents with cognitive symptoms, it can take months to receive an AD diagnosis, and often requires invasive tests such as a lumbar puncture and brain scans. We have the opportunity to utilise advances in technology to support our health systems in enabling more timely and accurate diagnosis so that patients have a better chance of benefiting from therapies.

An area of increasing interest in the diagnostic space is the use of AI. Ira Haraldsen, project coordinator of AI-Mind, discussed her team's intelligent AI-based tool that will help predict dementia risk. The tool aims to support primary care physicians in determining whether a patient will progress to AD based on the input of available data such as blood samples, digital cognitive tests, and electroencephalograms (EEGs).

AI-Mind is currently undergoing clinical studies to determine the accuracy of its algorithm; however, the technology promises to support earlier diagnosis, alongside the development of other tests such as blood-based biomarkers. Armed with technology, doctors can better diagnose AD and ultimately improve the care pathway for patients.

Health management and delivery

Once a person enters the health system with AD, they should be supported through a clearly defined pathway with a patient-centred care plan that delivers medical and social services. Embedding clarity in healthcare pathways at the national level is critical.

Scottish Brain Sciences is an organisation that is working towards a more holistic AD care pathway by moving from reactive to proactive clinical practice, which founder and CEO, Craig Ritchie, discussed at the symposium. The idea is to build a foundation of awareness by encouraging patients to care for their brain health throughout their whole lives, just as they do with any other physical health condition, rather than wait until they show signs of cognitive decline. The health system can then use the widespread patient participation to "generate and continuously update risk prediction algorithms, providing feedback to support clinical decision making and implementation of personalised prevention plans."

A critical factor driving the programme's potential is the partnership between the Scottish government and Alzheimer Scotland, which has allowed the integration of clinical services into regular public health programming.

It's time to take action on Alzheimer's disease

An AD diagnosis can certainly be life shattering but, as Marguerite proves, it is far from life ending. The case studies from the symposium demonstrate how there is hope for people following an AD diagnosis.

With the advent of innovations in medicines and technologies, we find ourselves at a crossroads in AD care. The once-in-a-lifetime revision of the EU general pharmaceuticals legislation presents an opportunity to develop a patient-centric approach to unmet medical needs. Through simplifying, speeding, and future proofing regulatory procedures, we can ensure new innovations in company pipelines reach patients faster. Yet, as we have recently noted, the proposed streamlining and shortening of the EMA decision-making process is positive but could be more ambitious to support faster patient access.

To address existing challenges and barriers across regulatory, diagnostic and treatment pathways, it is to all stakeholders' benefit to unify efforts across Europe that support disease awareness, improve access and capacity of diagnostic tools, and support individuals with personalised care plans in order to make a positive change for everyone impacted by AD, as well as the health of our health systems.