When Helen Rochford-Brennan was diagnosed with Alzheimer’s, at the young age of 57, her first thought was how she was going to tell her family.
“Breaking the news to loved ones is the hardest part,” she recalls. “I remember sitting across the table, my heart pounding, wondering how I was going to tell my kids. How do you tell your loved ones that you may not recognise them or remember the wonderful memories you’ve shared?”
A packed room in the European Parliament’s Spinelli building is listening intently as Helen shares a moving account of her 12-year journey with Alzheimer’s.
“For many people, a diagnosis feels like closing the door. A moment when the future seems uncertain and fears of isolation, loss and dependency creep in,” she explains. “The fear of a stigma or embarrassment led me to withdraw initially. I stigmatised myself. I didn't want anybody to know.”
Now, more than a decade on, Helen is a Global Dementia Ambassador, campaigning to fight the stigma around the condition, and to help others to come to terms with their diagnoses. “While a diagnosis brings undeniable challenges, it also offers an opportunity to redefine what it means to live,” she says. “I have found peace, acceptance and connection, and a commitment to living fully, to be an inspiring purpose.”
At the heart of report is a call for a patient-centred approach that prioritises the needs and experiences of people living with Alzheimer’s and their families
More than 55 million people worldwide are living with dementia, the most common form being Alzheimer's disease, which accounts for 60–70% of cases. In the EU, an estimated 8 million people live with dementia – a figure expected to double by 2050. But while Alzheimer’s has long been considered an untreatable consequence of aging, a new perspective is emerging. Thanks to advances in scientific research, diagnostic tools, and treatment approaches, Alzheimer’s disease is now increasingly viewed as a manageable condition.
The challenge, and opportunity, facing European healthcare systems, and those establishing regulatory and policy frameworks, is how to adapt to this changing landscape, to design policies that enhance outcomes and improve quality of life, for patients and their families.
Helen was speaking at an event organised by the European Brain Council (EBC), in collaboration with the European Federation of Pharmaceutical Industries and Associations (EFPIA), to launch their new paper: “Rethinking Alzheimer’s Disease Pathway: From Diagnosis to Care”.
The report aims to challenge the status quo on Alzheimer’s, advocating for a radical rethink in how the condition is treated and managed. It comprehensively reviews current practices, identifies barriers, and proposes actionable policy recommendations to reshape care pathways.
“We want to raise awareness that the landscape for Alzheimer’s is changing, at a European level and globally,” Frédéric Destrebecq, Executive Director at the European Brain Council, told attendees. “We are more and more confident and hopeful that this disease can be treated and managed.”
Read the full report
‘Rethinking Alzheimer’s Disease Pathway: From Diagnosis to Care’
At the heart of report is a call for a patient-centred approach that prioritises the needs, values and experiences of people living with Alzheimer’s and their families. This entails early and accurate detection and diagnosis, using a personalised care model – offering the right treatment for the right person at the right time.
The report underscores the importance of extending Alzheimer’s care beyond medical treatment to include psychological, social, and societal support. Tailored care, considering factors such as age, lifestyle, and comorbidities, is essential for improving outcomes. Achieving this requires interdisciplinary collaboration among neurologists, primary care physicians, mental health professionals, and caregivers.
Holistic care must also address the burden placed on families and informal caregivers, who often bear a significant share of the responsibility. Informal care accounts for nearly half of the global economic cost of dementia, estimated at €1.2 trillion in 2019. The report calls for policies that provide financial and psychological support to caregivers, helping to alleviate this imbalance.
MEP Tsvetelina Penkova, the host for the event, said the report was “not just a document, but a roadmap” that offers “the real solutions we need to implement”. “Of course, we need early and more accurate diagnosis, and we need advanced treatments. But sometimes they also need to be tailored for the individuals and we need a holistic care strategy,” Penkova said, echoing this call for a patient-centred approach.
Penkova also called for more “collaboration, cooperation and coordination” between member states. “Different member states still don't have unified policies and processes when it comes to treatment, when it comes to the opportunities that patients have to voice their problems and express their needs,” she said. “In the member state I'm coming from, in Bulgaria, there is still a lot to be done, and we can take a lot from the expertise across the EU.”
This was echoed by MEP Tomislav Sokol, who said more could be done to facilitate cross-border heath treatment. “All the administration and bureaucracy that you need to go through as a patient to get treatment abroad is extremely problematic and complex, and there is no real information provided for the patients,” he said. “Having clearer, easier, simplified rules on getting treatment outside of your home state is something that the EU can do a lot on.”
Early diagnosis
Central to the ongoing transformation in Alzheimer’s diagnosis is the role of biomarkers. Biomarkers are biological indicators that enable early and accurate diagnosis, before symptoms manifest. They provide clinicians with a clearer understanding of disease progression and pave the way for timely interventions. This shift to early diagnosis marks a profound opportunity to slow disease progression and improve quality of life.
However, these advancements necessitate robust healthcare systems equipped to implement such tools. Currently, significant disparities exist in access to biomarker diagnostics across Europe, with many healthcare systems underprepared to integrate these technologies.
The report emphasises the potential of big data analytics and artificial intelligence (AI) to revolutionise Alzheimer’s care. By analysing vast datasets, researchers can uncover patterns in disease progression, identify new therapeutic targets, and improve diagnostic accuracy. Creating centralised databases that integrate patient records, biomarker results, and treatment outcomes could enable more coordinated care and accelerate research. These systems would empower clinicians to make data-driven decisions, tailoring treatments to individual patient needs.
Despite these advancements, significant gaps remain in post-diagnostic care. Access to innovative treatments varies widely across member states, hindered by fragmented healthcare systems, insufficient funding, and regulatory challenges. Additionally, societal stigma and low public awareness about Alzheimer’s often deter people from seeking early diagnosis and care.
To address these challenges, the report outlines several key recommendations:
- Public awareness: Promote training, education and awareness campaigns to combat stigma and promote understanding of Alzheimer’s disease as a treatable condition.
- Leverage data and information sharing: Develop centralised databases and utilise big data analytics to advance research and improve patient care.
- Technological integration: Leverage digital health platforms and assistive technologies to enhance diagnosis, care coordination, and patient support.
- Interdisciplinary collaboration: Foster cooperation among healthcare providers, researchers, and policymakers to create comprehensive care frameworks.
- Equitable Access: Ensure all patients, regardless of European member state, region or socioeconomic status, have access to innovative treatments and support systems.
- Streamlined pathways: Establish clear, well-funded post-diagnostic pathways to ensure timely access to care.
The advancements highlighted in the report and during the meeting represent a pivotal moment in the fight against Alzheimer’s. By embracing early diagnosis, innovative treatments, and patient-centred holistic care, the report’s authors believe we can transform Alzheimer’s disease from a devastating diagnosis to a manageable condition. Achieving this vision requires collective action from industry, policymakers, healthcare providers, and society at large.