The 30th Alzheimer Europe Conference (#30AEC) “Dementia in a changing world” was held online from 20-22 October 2020. Almost 800 participants, from 43 countries, attended the conference, which boasted 260 speakers and 72 poster presentations, sharing their research, projects and experiences in an atmosphere of collaboration and solidarity, against the backdrop of the global COVID-19 pandemic.
Iva Holmerová, Chairperson of Alzheimer Europe opened the conference, extending a special welcome to the 39 people with dementia who were among the delegates, as well as their supporters. Following Iva Holmerová’s opening speech, delegates were also welcomed by Helen Rochford-Brennan, outgoing Chairperson of the European Working Group of People with Dementia (EWGPWD) and Myrra Vernooij-Dassen, Chairperson of INTERDEM.
Helen Rochford-Brennan addressed delegates from her perspective as a person living with dementia and as the outgoing Chairperson of the EWGPWD. She reflected on how much her life has changed during the pandemic, but also noted that many things remain the same: “People living with dementia continue to have their human rights denied and their voices unheard. We know this pandemic has affected people living with dementia in a disproportionate manner.” She asked those present to consider what could concretely be done to avoid such a situation happening again in the future, and she implored everyone not to allow the pandemic to stop their important work, particularly in the areas of research and of evidence-based strategies, both for dementia and to put an end to the COVID pandemic. In closing, she thanked Alzheimer Europe, The Alzheimer Society of Ireland, her travel supporter Carmel Geoghan, and her family, without whom the last six years in the EWGPWD (two as Vice-Chairperson and four as Chairperson) would not have been possible. She said that it had been a privilege and a pleasure, expressing particular gratitude to the Board of Alzheimer Europe for accepting a person living with dementia to serve on the Board, and for “sharing power in a meaningful way”, rather than the “all-too-often tokenistic” approach.
Myrra Vernooij-Dassen spoke on behalf of the INTERDEM network (Early detection and timely INTERvention in DEMentia). She emphasised that social distancing, which is the key measure used to protect against the coronavirus, has had deleterious effects on older individuals and people living with dementia. Measures to protect against the virus were denied to nursing homes and general practices. She emphasised that, during this public health crisis, we need to combat more than just the virus. INTERDEM calls for a more balanced approach, stressing the importance of taking the risk of social, mental, cognitive and physical breakdown into consideration, alongside the risk of infection.
As part of this year’s new conference format, Alzheimer Europe organised two plenary roundtable sessions, in lieu of keynote lectures. The first of these, “Dementia in a changing world”, saw a panel discussion including Adelina Comas Herrera, co-lead of the Strengthening Responses to Dementia in Developing Countries (STRiDE) project; Mario Possenti, general secretary of Federazione Alzheimer Italia; Helen Rochford-Brennan and Lennert Steukers, Associate Director, Janssen Neuroscience Team. All plenary sessions at the conference were co-moderated by Jean Georges, Executive Director of Alzheimer Europe and Kim Coppes from Live Online Events.
Adelina Comas-Herrera referred to an updated report she co-authored, for which data was collected regarding the impact and mortality of COVID-19 in people living with dementia in nine countries. The percentage of people with dementia in care homes, whose deaths were linked to COVID-19, ranged from 29% to 75% across those countries. The ban on visits to care homes across the world has kept people with dementia detached from essential affective bonds and from the provision of family care, for many months. There is a pressing need, and also an opportunity for innovation.
Mario Possenti noted that the work of associations in Italy and beyond may have changed in terms of methods, but not in terms of commitment. Associations have found strength they did not know they had, and have come up with a multitude of innovative initiatives to meet the new needs of the COVID era. One challenge, however, has yet to be fully met: Creating a contactless community, supportive of the needs of people with dementia.
Helen Rochford-Brennan asked her fellow panellists and all delegates to reach out to people living with dementia in their countries and in their local communities; to support them in making sure their voices are heard and listened to; and to ensure they have the opportunity to participate in dementia research.
Lennert Steukers emphasised that a number of stages of research have been impacted: Discovery/preclinical work has suffered due to lab closures and technical unemployment of researchers; clinical trials have been suspended or severely delayed, which may impact data quality; and patient involvement has been difficult due to restrictions. The clinical trial landscape has dramatically changed and there has been a huge impact on the research community, with a whole generation of researchers being affected.
On 21 October, the second plenary session, on “Diagnosis and post-diagnostic support” opened with a presentation on “Improving the diagnosis of neurocognitive disorders: implementing the recommendations of the 2nd European Joint Action on Dementia”, given by Pierre Krolak-Salmon, President of the French Federation of Memory Centres. The next presentation saw clinical neurologist Edo Richard discussing ethical issues linked to the disclosure of diagnosis. In the third presentation, Simon Lovestone, Vice-President, Disease Area Leader, Neurodegeneration, Janssen, looked at the pharmacological treatment of Alzheimer’s disease and at what we have learned in recent years; and the final presentation was delivered by Gunhild Waldemar, Professor of Neurology and Chair of the Danish Dementia Research Centre at Rigshospitalet, University of Copenhagen. She was one of the leading forces in the establishment of the new European Academy of Neurology (EAN) and her presentation, on medical management issues in dementia, shared the new recommendations from the EAN.
The third plenary of the conference, which took place later the same day, explored “Building dementia-inclusive societies”. Dianne Gove, Director for Projects at Alzheimer Europe, opened with a presentation on “Patient and public involvement approaches in dementia research: the experiences and contributions of the European Working Group of People with Dementia” (EWGPWD). Sabine Jansen, Executive Director, Deutsche Alzheimer Gesellschaft (DAlzG) shared some of the experiences of her organisation, with regards to promoting dementia-inclusive hospitals. The third presentation was given by Jacqueline Hoogendam, who is the co-ordinator for dementia policy and international affairs on Long-Term Care at the Ministry of Health, Welfare and Sport in the Netherlands. She listed some of the learnings from the Dutch dementia strategy - the “Deltaplan Dementie” – with regards to making Dutch society more dementia-friendly. The final presentation of plenary three was given by John Keady, who leads the inter-disciplinary Dementia and Ageing Research Team at the Division of Nursing, Midwifery and Social Work. He was the Chief Investigator on the multi-site ESRC/NIHR Neighbourhoods and Dementia Study and it was this study and the outcomes of the project which were the main focus of his talk.
The fourth plenary session took place on the morning of 22 October. 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. 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”. 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; while Carlos Diaz, 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.
The fifth and final plenary session was held that afternoon, and took the form of a second roundtable. 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.
Maria Carrillo said 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.” That being said, she also stressed that her association's first priority is the health and safety of study participants and study staff. The Association is also working hard to ensure that, even during the pandemic, people living with dementia have access to high quality, person-centred care.
Dan Chisholm 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 Government 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 implementation 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.
Charles Scerri said 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 added, 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. Since 2014, EU funds targeted to brain research have totalled EUR 3.17 billion, including EUR 683 million for research into neurodegenerative diseases, the majority 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. Finally, 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.
The three-day conference also featured 24 parallel sessions and 6 special symposia on diverse topics for delegates to choose from.
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.
