From the 20th of October to the 22nd of October the 30th Alzheimer Europe Conference ‘Dementia in a changing world’ took place as a virtual event due to the coronavirus restrictions. Almost 800 participants from 42 countries attended Alzheimer Europe’s first ever virtual conference with 260 speakers and 100 poster presentations on the agenda, sharing research, good practices and work in progress. Apart from some very interesting special sessions dedicated to the impact of the coronavirus, it was also good to see that lots of speakers included their lessons learned from the first COVID 19-wave in the different areas of dementia care, policy and research. The coronavirus pandemic has highlighted many challenges, but we must also embrace the opportunities in different fields like communication, technology and telemedicine.
Day 1: Finding the right balance between security and wellbeing
During the opening session, Helen Rochford-Brennan addressed the delegates from her perspective as a person living with dementia and as the outgoing Chairperson of the European Working Group of People with Dementia. Helen stressed the need to adjust our healthcare and support systems now more than ever for vulnerable people and people living with dementia. I fully endorse Helen’s strong call to action for a rights-based approach, because advocacy led by the experts by experience is the way forward. We need to stay close to people with dementia instead of isolating them in these times of the coronavirus pandemic. Human connection is the heart and soul of everything.
As part of this year’s new conference format, Alzheimer Europe organized plenary roundtable sessions instead of keynote lectures. The varied background of the panelists and the smooth interaction with the conference attendees gave this new format the necessary dynamic that is needed in an online format. The message of panelist Adelina Comas-Herrera especially aligned with the current challenges around the round table topic:
“The ban on visits to care homes across the world has kept people with dementia detached from affective bonds and the provision of family care. 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 urgently needed.”
It is not enough to ensure that long-term care workers receive tailored training to achieve the necessary level of specific skills that are crucial during a pandemic like this. We must also scale up the opportunities of accessible remote care and support. Many people living with dementia and family caregivers were able to start using technology to stay in touch and stay involved during the COVID-19 lockdown. If implemented well, these developments could remain as part of the norm. The first parallel session on assistive technologies gave food for thought on the current challenges. The recommendations from INDUCT, Interdisciplinary Network for Dementia Using Current Technology, offered hands-on guidelines for a more person-centered technology approach. The different talks in this session also stressed one of the biggest challenges in the field of eHealth and care technology: how we involve people with dementia in all stages of technology design and implementation.
My first virtual conference day concluded with the special session on COVID-19, social distancing and its impact on social health in various settings and phases of life. Finding the right balance between security and wellbeing is the key challenge for the future. When we broaden the perspective, I believe this is a universal call to action for dementia care and policy in general. We need a multi-perspective approach that involves different stakeholders with a shared perspective: the rights and needs of the person with dementia in all stages of the condition. We need to focus less on our own protective view as a society where we often consider only a person’s inabilities and instead shift our perspectives to the capacities of people with dementia.
Day 2 – Valuing and respecting the involvement of each person
The second day of the Alzheimer Europe Conference started with an interesting plenary session on timely diagnosis. This is a key area where much more collaboration between the biomedical and the psychosocial field is needed, as in so many other challenges. Edo Richard gave a clear overview on the ethical and moral considerations of diagnosis disclosure. Timely diagnosis is not synonymous with early diagnosis and there is a widening gap between research and clinical practice concerning the diagnosis of dementia. The highlight of this second plenary session was the presentation by Simon Lovestone who shared his lessons learned from three decades of experience in research and development with a clear call to action:
“We need speed for Alzheimer’s disease drug development. The rapid progression, unseen investments and worldwide collaboration in COVID-19 research has shown us this can be achieved.”
It’s also good to see that this year’s conference offered two dedicated sessions to cultural diversity. The parallel session on ethnic minorities touched on some key topics in this growing field of attention like (post-)diagnostic support and residential care for older migrant populations, targeted policy initiatives and involvement of key stakeholders to reach out more proactively. Inclusion was the key word on this second conference day, with a truly inspiring session by the colleagues of the ‘European Working Group of People with Dementia’ talking about their experiences during the COVID 19-lockdown. As in the previous years, the session of the working group was one of the conference highlights. Geert, one of the members, is also a driving force behind our ‘Flemish working group of people with dementia’ in Belgium.
The following parallel session on awareness raising campaigns offered some ambitious examples from France, Denmark and The Netherlands, but the standout presentation was held by Lisa Gernon from The Alzheimer Society of Ireland. Lisa talked about the impact dementia advocates can have for everyone affected by dementia. Awareness through personal stories of people with dementia can generate political support and structural budget as shown by Ireland’s Pre-Budget Submission campaign. Their simple but powerful campaign is definitely an inspiration for other countries.
My journey on the second conference day ended at the third plenary session on ‘Building dementia-inclusive societies’. This general topic was explored through some interesting talks, notably the first presentation by Dianne Gove on patient and public involvement approaches in dementia research and the lecture by John Keady on the key findings of the ‘Neighbourhoods and Dementia Study’. The knowledge of people with dementia in clinical and psychosocial research is crucial and we should adapt the research process to their needs and wishes. Therefore we need to involve them throughout the whole research process. It’s about carrying out research together with people, rather than only about them. Or to sum up this second day with a quote from Dianne’s presentation: “Inclusion is not a matter of power but of collaboration and valuing and respecting the involvement of each person.”
Day 3 – Practice what you preach
The focus of the final day of this virtual event was moving from research and innovation to clinical and care practice and maintaining dementia as a European policy priority. Carol Brayne opened the fourth plenary session with a well-received talk on the latest trends in the prevalence of dementia and discussed the impact of prevention messages. Dympna Casey explored the various possibilities of assistive technologies with a special focus on the role of social robotics in dementia care. Social robotics can never be a replacement for human care and kindness, but they could have a complementary role in daily care and enhancing wellbeing.
The topics of the fourth plenary were also high on the agenda during the following parallel session on national dementia strategies. It kicked off with an overview of the new dementia strategy of Germany as a good example of an integrated approach in the field. Another standout presentation for me was the talk by Louise Hopper on the Irish Dementia Registry including identification of outcomes and data that matter most. This sets a clear standard to improve quality of life for people with dementia. The presentations from working group members during the conference and the next parallel session on involving people with dementia taught me a lesson I learn time and time again: there is no greater wisdom than the daily reality of people with dementia. Each country should have a working group of people with dementia and involve them structurally. That’s being truly dementia-inclusive.
To turn this ambition into practice, we need to convince policy makers around the globe of the sense of urgency. This was the focus of the concluding panel discussion. More than ever dementia should be a high priority as a public health challenge at a local, regional, national and international level. The COVID-19 pandemic should serve as an accelerator to move forward in this ambition. But being dementia-inclusive is and will always be work in progress. It’s a process, and people with dementia should always be the quality check in the actions that are being developed.
Following this last stage of my journey through three days of virtual Alzheimer Europe conferencing, I would like to conclude with my five ‘take away’-messages:
- Online conferences can never replace the live atmosphere, but definitely offer some fresh ingredients. The digital availability of all the poster presentations on the conference platform does much more credit to the presenters and all the great work going on in the research, care and policy field. Something to keep for the future!
- It was good to see that during the conference the importance of talking about the person with dementia instead of the patient was stressed. Words matter.
- The COVID 19-pandemic has taught us many lessons and looking into the growing field of eHealth and telemedicine it surely is that people with dementia can still learn, in all stages of the condition.
- There is still lots of work to be done to establish the idea that people with dementia are the experts of their own life into the minds (and hearts) of all stakeholders involved in dementia care and policy.
- Apart from the need for structural funding for a national dementia strategy, one of the big challenges is still the involvement of people with dementia in the realization of the strategies, from the start until the quality measurement. Or as the saying goes: practice what you preach.
Looking forward to see everybody next year ‘live’ in Budapest on the 31st Alzheimer Europe Conference from the 29th of November tot the 1st of December 2021!
For more updates on the 30th Alzheimer Europe Conference, check out #30AEC on Twitter.
Olivier Constant -Communications Officer – Flanders Centre of Expertise on Dementia
Olivier Constant holds a Master Degree in ‘Social Sciences’ with a specialization in ‘Medical Sociology’ and a Master Degree in ‘Film Studies & Visual Culture’. For eight years now, he’s responsible for the communication policy of the Flanders Centre of Expertise on Dementia. Based in Antwerp, the Expertise Centre operates as an official partner organization of the Flemish Government (Belgium) that works to spread research, good practices and clear communication tools about care for people with any type of dementia. As a communication officer his key missions are:
– Coordination of internal and external communication
– Editorial and content management
– Implementation and coordination of the campaign ‘Forget dementia, remember the person’, that strives for empowerment of people with dementia and wants to spread a more realistic image of dementia
– Support and promotion of inclusive community projects
– International networking and project development on awareness raising and dementia-friendly policy around the world
– Coordination of the international project ‘Dementia in Cultural Mediation’ (DCUM), a European collaboration between partners from Belgium, The Netherlands, Spain and Denmark that explores the value of arts and culture to enhance quality of life for people with dementia and their caregivers
Olivier Constant has been active as a speaker in different conferences and meetings on dementia in countries as Belgium, the UK, Denmark, Germany, Canada, Slovenia, Malta, Hungary, Luxembourg, Austria, The Netherlands, the USA and Japan. He is also a member and Belgian representative of WYLD (World Young Leaders in Dementia), an international network of passionate, young professionals working across disciplines and borders to develop innovative dementia solutions. Since 2012 he is active as a coordinating member of the ‘Interregional Working Group on Dementia Friendly Communities’ between Flanders & The Netherlands. Recently he started the first ever ‘Working group for people with dementia’ in Flanders to build further on a true inclusive society for people with dementia and their caregivers.