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Alzheimer Europe hosts European Parliament Workshop on “The Alzheimer’s spectrum: Changing our understanding of Alzheimer’s disease and dementia”

Tuesday 15 June 2021

On 15 June, Alzheimer Europe hosted an online European Parliament Workshop entitled “The Alzheimer’s spectrum: Changing our understanding of Alzheimer’s disease and dementia”. Alzheimer Europe Chairperson Iva Holmerová chaired the event, which was attended by EU policymakers, representatives from national Alzheimer’s associations, national health ministries, pharmaceutical companies, researchers and members of the European Working Group of People with Dementia. MEPs Deirdre Clune (Ireland), Colm Markey (Ireland) and Roberta Metsola (Malta), were present as well as a representative from the office of Włodzimierz Cimoszewicz (Poland).

Ms Clune, MEP (Ireland), Vice-Chair of the European Alzheimer’s Alliance, welcomed everyone to the Workshop and spoke of the importance of keeping dementia as a priority in Europe, particularly in research, with a greater need to take a coordinated and collaborative approach to help improve the lives of people with dementia and of carers.

Philip Scheltens, professor of neurology and Director of the Alzheimer Centre, VU University Medical Center Amsterdam, presented on the progression in the detection of Alzheimer’s disease, explaining developments from clinical to biological diagnoses. Key to this has been the ability to use biomarkers, detecting the presence of Alzheimer’s disease years before the presence of symptoms. Prof. Scheltens further explained the difference between Alzheimer’s disease and dementia, highlighting that the former denotes the biological changes within the body, whilst dementia represents the symptoms that present at the later stages of the disease spectrum.

Frank Jessen, a professor and principal investigator at the University Clinic Cologne, introduced developments in the detection and diagnosis of dementia, making use of both clinical and biological mechanisms. As part of this, some of the challenges around the need for enhanced availability, reduced invasiveness, easily interpretable results and sensitivity to early symptomatic changes were explored. In particular, Prof. Jessen identified how blood-based biomarkers are showing excellent potential to be a less invasive, yet accurate indicator in the detection and diagnosis of Alzheimer’s disease.

Miia Kivipelto, Professor of Clinical Geriatric Epidemiology at the Department of Neurobiology, Care Sciences and Society at the Karolinska Institutet, Sweden, discussed new opportunities for prevention along the Alzheimer’s spectrum. She explained that preventive strategies have a wider impact on dementia than previously thought and shared details of the FINGER trial, of which she is the lead. This is the first randomised controlled trial showing that it is possible to prevent cognitive decline using a multi-domain lifestyle intervention among older at-risk individuals. The next steps towards successful dementia prevention should include tailoring approaches to specific risk groups in different settings, which she termed “precision prevention”. Prof. Kivipelto stressed the importance of taking a collaborative approach, internationally, in order to achieve this goal and said that initiatives such as EURO- and World-Wide- FINGERS are expected to advance multidomain prevention models focusing on lifestyle and vascular care.

The final speaker to take the (virtual) floor was Anders Gustavsson, co-founding partner at Quantify - a partner in health economics, outcomes research, real-world evidence and market access. Dr Gustavsson presented on behalf of the Project Alzheimer’s Value Europe (PAVE), which is funded by Roche and Biogen. Alzheimer’s disease, he noted, starts 20-30 years prior to the onset of dementia, but this is not taken into account in current population estimates. PAVE decided, therefore, to conduct a study to estimate the numbers of people with Alzheimer’s disease, across the entire continuum. To do this, they developed a model to estimate numbers and found a lot of evidence on different outcomes and different types of data, covering populations with biomarkers and those with clinical diagnosis. Using these estimates and combining with underlying populations, we get to they concluded that about 25% of the European population over 50 has Alzheimer’s disease. The majority of persons with Alzheimer’s disease do not have dementia, he stressed, but are in the very early stages of disease where prevention may still be possible. These early stages of disease should receive more attention from policy makers and health care planners, he urged and noted that the costs of dementia are comparable to Cancer, while the spending pot is vastly different.

Following the presentations, a lively exchange took place between participants and speakers, with discussions revolving around: communicating about Alzheimer’s disease and dementia considering the changing definitions of both, in recent years; ways to improve detection of the disease in general practice settings; the need for more public health campaigns and messages to raise awareness and reduce stigma, focusing on the fact that this is a brain disease, promoting better brain health and emphasising prevention/risk-reduction strategies; and the need to mitigate the public’s expectations around ‘miracle drugs’ for what is a hugely complex disease. The FDA approval of aducanumab was also mentioned, in this context, with Frank Jessen commenting that it is important to make sure that people understand the benefits of such a drug will not be seen overnight, nor will the benefits of other similar interventions be immediate. Representing the European Commission at the meeting, Nicoline Tamsma (DG Santé) reminded researchers and Alzheimer associations of the importance of registering any new, proven interventions - for example some of the combined prevention methods discussed - on their Best Practice Portal: which the Commission uses to support Members States in rolling out interventions.

Concluding the Workshop, Iva Holmerová thanked presenters and participants for their contributions during the meeting, whilst advising members that the next meeting would take place on 28 September 2021, with a focus on the Innovative Medicines Initiatives (IMI).

Videos from the event are available on Alzheimer Europe's YouTube Channel:

Pictured: (from top left to bottom right): Anders Gustavsson, Iva Holmerová, Philip Scheltens, Frank Jessen, Miia Kivipelto, Alzheimer Europe Executive Director Jean Georges.