Luxembourg, 21 October 2020
The 30th Alzheimer Europe Conference (#30AEC) “Dementia in a changing world” was formally opened on the afternoon of 20 October 2020. Almost 800 participants from 42 countries are attending the event, which is Alzheimer Europe’s first ever virtual conference, from 20 to 22 October 2020. On the agenda are 260 speakers and 100 poster presentations, sharing 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 35 people with dementia who are among the delegates, as well as their supporters. She noted the importance of collaboration in general and highlighted that it is vital to work together, for and with people with dementia, to help them get through this difficult period. Alzheimer Europe and its members are working hard to ensure these principals of collaboration and mutual support are upheld.
The COVID pandemic has highlighted many things that are already known, but which are not yet well respected, she said. Modern technologies are becoming more and more necessary, even and especially in older age and for people with dementia. There is also a need to better attune our healthcare systems to vulnerable people and people living with dementia, and to ensure that long-term care workers receive further training to achieve the necessary level of specific skills that are crucial during a pandemic like this. Life brings different risks, one of which is a variety of infections, but, she stressed “it is necessary to go on and live. Be careful, but live.”
Finally, Iva Holmerová reminded delegates of the importance of thinking of our health as part of a bigger picture – as “one health”. We can be healthy only if our planet, our environment, and the animals we live alongside, remain healthy too. We should keep this uppermost in our minds, she concluded.
Following this 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 welcomed everyone to the conference and 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. We are isolated at home, dying in care homes and unable to spend time with family and friends.”
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.
“I hope this conference motivates you to organise things in your country, find the people living with dementia who are isolated and support them to be involved in research and policy. Become a robust ally. Be someone who asks ‘how can I make it better?’ and then takes action.”
In closing, Helen Rochford-Brennan thanked Alzheimer Europe, The Alzheimer Society of Ireland, her travel supporter Carmel Goeoghan, 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 INTERDEM (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.
Dementia in a changing world
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. This and indeed all plenary sessions at the conference are being co-moderated by Jean Georges, Executive Director of Alzheimer Europe and Kim Coppes from Live Online Events (pictured, right).
Panellist Adelina Comas-Herrera, Care Policy and Evaluation Centre, London School of Economics and Political Science, 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. Guidelines and tools to support institutions and practitioners to respond better to the needs of people with dementia during the pandemic are needed as a matter of urgency, she stressed.
During the discussion, 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. “Never before has it been so important to support people with dementia and to commit ourselves to ensure that their rights, health and quality of life are respected”, he said.
Associations in Italy 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. Technology can solve many of the communication problems that the pandemic has caused, but, he noted, we must not forget that communication is not only made up of words but also of looks and physical contact. Speaking can be difficult for some people, especially behind a computer screen, as it makes everything more distant. “Nothing can replace the warmth of a hug and of physical presence, for a person with dementia”, he said.
Helen Rochford-Brennan focused on how the COVID-19 pandemic has made the need for research and for listening to the voices of people with dementia even more important. She 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 during the ongoing pandemic: Discovery/preclinical work has suffered due to lab closures and technical unemployment of researchers; clinical work has been hit, with clinical trials being suspended or severely delayed, which may have an impact on data quality; and patient involvement has also been difficult due to travel restrictions and only limited face-to-face contact being possible.
The clinical trial landscape has dramatically changed in terms of how these trials are being conducted and will continue to be conducted. He gave the examples of decentralised, remote and virtual trials, and pointed out some of the challenges this presents in the field of neurodegeneration. There has been a huge impact on the research community, he said, with a whole generation of researchers being affected, for instance due to fellowship schemes/research programmes being stopped.
Following the opening ceremony and the first plenary session, delegates had the chance to join one of four parallel sessions. There was one on the topic of assistive technologies and another on carers of people with dementia. The NEURONET initiative (Efficiently Networking European Neurodegeneration Research) organised the third session, and the fourth parallel session was an interactive INTERDEM Academy seminar looking at ethical dilemmas in research practice.
A further four parallel sessions followed this, until the close of day one of the conference, at 18.00 CET. Two of these covered the areas of post-diagnostic support, minority ethnic groups and the other two, again, were organised by Neuronet and INTERDEM. The latter picked up on the topic of COVID-19 social distancing and its challenges, already touched on by Myrra Vernooij-Dassen during the opening ceremony.
Prior to the conference, Alzheimer Europe Director for Projects Dianne Gove and Project Officer Ana Diaz hosted two online information sessions for delegates living with dementia, to show them around the conference platform and how to use it.