Luxembourg, 23 October 2020
The 30th Alzheimer Europe Conference (#30AEC) “Dementia in a changing world”, came to a close yesterday evening, 22 October 2020. The focus of the final day of this virtual event was on moving from research and innovation to clinical and care practice, and on dementia as a European priority.
From research and innovation to clinical and care practice
The fourth plenary session took place at 8.45am CET. Carol Brayne, Professor of Public Health Medicine and Co-Chair of the Cambridge Public Health Interdisciplinary Research Centre in the University of Cambridge, opened with a talk on the latest trends in the prevalence of dementia and discussed whether prevention messages are having an effect.
Dementia is changing across generations and within populations, she said. The evidence on prevention clearly points to the fact that primary prevention for dementia risk profiles for whole populations, combined with effective management of existing risk conditions in individuals, is the most effective strategy. On the other hand, she stressed that “there is no evidence that screening and early detection will be effective at present”.
Up next, Alexander Kurz, senior scientist at the Department of Psychiatry, Klinikum rechts der Isar, Technical University of Munich and Director of the university’s memory clinic, shared some of the findings of “INDEED, an interprofessional intervention in dementia education for South-Eastern European countries”. Dementia is a complex disorder that can only be tackled by several health and social care professionals working together, he said. He also stressed that inter-professional shared education is key for collaboration and networking, and can take advantage of modern digital learning formats. The INDEED project provides an online e-learning programme, addressing multiple professions simultaneously and conveys a person-centred, holistic concept of dementia care, he summarised.
In the third presentation, Dympna Casey, Professor and Head of School in the School of Nursing & Midwifery NUI Galway looked at assistive technologies and explored what the role of social robotics could be in dementia.
Carlos Dìaz, CEO of Synapse Research Management Partners and Coordinator of the IMI NEURONET project, was the final speaker in plenary four. He discussed the neurodegeneration portfolio of the Innovative Medicines Initiative (IMI), and looked at ways to ensure project results are converted to sustainable assets.
Globally, society is facing several highly complex, urgent challenges, and to be able to respond, he said, scientific research may need a paradigm change in how it is organised. A systems leadership approach is being explored in the IMI neurodegeneration portfolio and it is hoped this will help to propel scientific efforts towards the much-needed actionable results.
Following this session, delegates were again given the option to join one of four possible parallel sessions, covering national dementia strategies; acute hospital care; the ethical, legal and social implications of using AI in dementia research (session organised by the VirtualBrainCloud project); and the blood-based diagnosis of Alzheimer’s disease (session organised by BBDiag).
Following this were two symposia, hosted by Biogen and the European Academy of Neurology (EAN) respectively, and four further parallel sessions, on risk factors and prevention; involving people with dementia; a Neuronet session on public-private-partnerships in the post-COVID era; and finally an INTERDEM session looking at the “Impact of COVID on dementia services and staff: inspiration for novel research”.
Maintaining dementia as a European priority
The fifth and final plenary session was held at 4pm CET on Thursday 22 October, and took the form of a second roundtable discussion (the first roundtable took place in plenary one, on Tuesday) as part of this year’s interactive virtual conference format. The discussion revolved around “Maintaining dementia as a European priority” and the panellists were Maria Carrillo, Chief Science Officer, Alzheimer’s Association (US) global research program; Dan Chisholm, Programme Manager for Mental Health at the WHO Regional Office for Europe, Nils Dahl, Senior Policy Advisor at Germany’s Federal Ministry of Health; Charles Scerri, Chairperson of the Malta Dementia Society, Vice-Chairperson of Alzheimer Europe and National Focal Point on Dementia in Malta; and Nicoline Tamsma, Policy Officer at the European Commission’s DG for Health and Food Safety, Unit Health Promotion, Disease Prevention, Financial Instruments.
Panellist Maria Carrillo shared the perspective of the Alzheimer’s Association (US) during the conversation, stating that “even now – especially now – Alzheimer’s and all other dementias must be maintained as a global priority. Even during the pandemic, at any given moment, discovery is happening and must not be delayed. As the world’s largest non-profit funder of Alzheimer’s and dementia research, the Association’s commitment to advancing the critical work of the scientific community is unwavering. We are committed to funding researchers directly, as we also relentlessly pursue additional resources on all fronts, including through our federal advocacy efforts.”
She went on to stress the significant impact that the COVID-19 global pandemic is having on Alzheimer’s and dementia research. That being said, she qualified that some trials – as they are able – are exploring innovative approaches to keep the momentum of their study, and that it is rewarding to see the research community keep this important work going, all the while bearing in mind that “the Alzheimer’s Association’s first priority is the health and safety of study participants and study staff, especially vulnerable elders and people with dementia and their families.” With the COVID-19 pandemic creating multiple challenges for people living with dementia; and with nursing homes, assisted living communities and the families and caregivers of people with dementia all being at the frontline of this crisis; Maria Carrillo also said that the Alzheimer’s Association is working with national, state and local agencies to ensure people living with dementia have access to high quality, person-centred care.
During the discussion, Dan Chisholm emphasised that dementia represents a public health challenge of international concern, especially in the context of rapidly ageing populations and drew attention to the fact that COVID-19 has served to expose the shortcomings of most countries’ preparedness and response capabilities, not only with respect to viral disease outbreaks but also to healthy ageing, dementia and long-term care.
“The WHO continues to work through the crisis with its Member States and partners to develop and make available tools and other measures to support implementation of its global action plan on the public health response to dementia, including a dementia-friendly and inclusion toolkit as well as risk-reduction guidelines for cognitive decline and dementia”, he said, and he pointed out that the WHO has also rapidly stepped up its work to provide guidance to countries on COVID-19, including clinical management, psychosocial support needs and maintenance of essential care and services.
Nils Dahl assured delegates that, during the past decade, Germany’s Federal Gov-ernment has initiated numerous programmes and measures to support people with dementia and their relatives, culminating in the development of the country’s national dementia strategy and its adoption by the Federal Cabinet in July 2020. Amid the pandemic, the implementation of the dementia strategy remains a priority for the government, he stressed. He also emphasised that all actors involved in the process of the strategy’s imple-mentation would take into account that persons with dementia might not only be at high risk of falling seriously ill if infected with COVID-19, but that they can be adversely affected by COVID-19-related restrictions as well.
Speaking about the current pandemic and its impact on people with dementia and carers, Charles Scerri stated that “times like these have taught us the importance of coming together, as European nations, in supporting individuals living with dementia” and that this could be achieved through innovative resources directed towards maintaining their wellbeing. We have also learned that individuals living with dementia, and those who care for them can become particularly vulnerable during such a crisis, he continued, insisting that “Europe must do more by investing in more research, putting dementia as a top priority in its health and social programmes.”
Nicoline Tamsma drew attention to some of the Commission’s efforts to see dementia recognised as a priority, such as supporting initiatives via the EU Health Programme, including two Joint Actions, the second of which helped advance work on diagnosis and post-diagnostic support, crisis and care coordination, residential care, and dementia-friendly communities. Since 2014, via Horizon-2020, EU funds targeted to brain research totalled EUR 3.17 billion, which included EUR 683 million for research into neurodegenerative diseases, the majority of which, she noted, had been dedicated to Alzheimer’s disease and dementia. The Commission also continues to support the work of Alzheimer Europe.
With regards to how the pandemic has affected progress in the area of dementia research, the Commission is working with Member-States and international partners to tackle COVID and its consequences, she said. Together with WHO Europe and the European Observatory on Health Systems and Policies, the Commission monitors how national health systems respond to the pandemic, including a focus on measures taken to protect care homes.
Addressing the mental health impact , she pointed to a specific network space on the EU Health Policy Platform, set up by the Commission to support stakeholders and to facilitate practice and knowledge exchange, also with regard to vulnerable groups such as people with pre-existing conditions. Alzheimer Europe is among more than 65 participants.
Answering the question, “how can we ensure that dementia remains a priority at national, European and global level and what should priority actions be?”, Nicoline Tasmsma highlighted the Commission’s mandate in the field of public health centres on providing support to Member States and shared that DG SANTE had set up a mechanism to identify and implement good practices and implementable research results. Through the Steering Group on Health Promotion, Disease Prevention and Management of NCDs, Member States select priorities and practices of most relevance to them and the Commission then supports their implementation through EU financial instruments, such as the Health Programme.
All plenary sessions at the conference were co-moderated by Jean Georges, Executive Director of Alzheimer Europe and Kim Coppes from Live Online Events.
Goodbye, virtual world. Hello, Bucharest!
The three-day virtual conference was formally closed by Alzheimer Europe Chairperson Iva Holmerová who thanked speakers and poster presenters for sharing their research, projects and experiences. She also said a special thank you to the various sponsors of the conference:
The European Union Health Programme (2014-2020), Roche, Biogen, the European Federation of Pharmaceutical Industries and Associations (EFPIA) and BBDiag.
All delegates were invited to mark the dates of the next Alzheimer Europe Conference (#31AEC) in their calendars. “Building bridges” will take place in Bucharest, Romania from 29 November to 1 December 2021.
Showcasing EU projects – Neuronet and VirtualBrainCloud at #30AEC
Neuronet has been designed to boost synergy and collaboration across the projects of the Innovative Medicines Initiative (IMI) Neurodegenerative Disorders (ND) portfolio. With a total funding budget of EUR 386 million, and addressing the whole R&D spectrum from preclinical science to real-world data, the IMI ND portfolio brings together 18 consortium projects and over 230 partnering organisations. Since its launch in 2019, Neuronet’s support activities have focused on key areas identified by projects as challenging, including data sharing and accessibility, working with Regulators, and ensuring patient privacy. The Neuronet parallel sessions held as part of the conference were designed to showcase the work of IMI ND projects in this key areas, stimulating discussion on major issues and how to address them.
The first session, chaired by Carlos Dìaz (SYNAPSE Research Management Partners), was entitled “Efficient data sharing: a must for science to respond to societal needs”. During this session, Nigel Hughes, Rodrigo Barnes and Colin Veal from the EHDEN and EPAD IMI projects discussed technical solutions that are being developed by IMI projects to overcome key obstacles to effective sharing of health data, including data harmonisation, federated networks, digital data discovery tools and research environments. The second Neuronet session, entitled “Ensuring ethics and patient privacy whilst boosting research”, was chaired by our very own Jean Georges and included presentations from Nathan Lea, Pilar Cañabate and Sébastien Libert of the EMIF, MOPEAD and RADAR-AD projects, showcasing how they have addressed ethical and legal concerns around the use of remote monitoring technologies, autonomy and information governance for big data research. The next topic to be addressed was Regulatory & HTA assessment, in a session chaired by Diana O’Rourke of NICE. Presentations from Gill Farrar, Jacoline Bouvy and Marco Viceconti illustrated how the AMYPAD, ROADMAP and Mobilise-D IMI projects are actively engaging with European regulators, to identify pathways for approval of neuroimaging and digital biomarkers. Neuronet project leader Lennert Steukers closed off the 2020 Neuronet Sessions, moderating a discussion on how COVID-19 has affected large public-private partnership projects. In this roundtable session, IMI project leaders who are experts on mobility disorders, digital biomarkers, stratified medicine and dementia prevention discussed the research challenges caused by the ongoing pandemic, and how to ensure that neurodegenerative disease research remains a priority in the post-COVID period.
Elsewhere at #30AEC, the Horizon 2020-funded VirtualBrainCloud (TVB_Cloud) project held two sessions on the use of artificial intelligence (AI) in dementia research. In the first session, chaired by Katarina Stevanovic of TP21, project leader Petra Ritter (Charité Medical University Berlin) presented the TVB_Cloud approach to develop a cloud-based platform for personalized diagnosis and treatment of dementia. Martin Hofmann-Apitius of Fraunhofer SCAI outlined their knowledge graph approach to increase our mechanistic understanding of neurodegenerative disease, and to identify potentially druggable pathways. Viktor Jirsa (Aix-Marseille University) rounded off the session, illustrating how algorithms developed to analyse complex systems could help us understand brain networks in health and in disease.
The second TVB_Cloud session addressed the ethical, legal and social issues raised by the use of AI in dementia research. Bernd Stahl, Ethics Director of the Human Brain Project, outlined how some of the ethical issues raised by the use of AI in healthcare research could be mitigated at policy, organizational and project levels, to ensure that the benefits of AI do not outweigh the risks. Data protection is a major concern for big data research using AI, and Michael Cepic (University of Vienna) guided the audience through the General Data Protection Regulation, showing how it protects patient privacy whilst enabling health and care research. Rounding off the session, Richard Milne of the Wellcome Sanger Centre addressed the benefits and harms of risk disclosure when risk is detected using algorithm-based approaches, describing a potential route to mitigate harms whilst maximising benefit.
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