32nd Alzheimer Europe Conference happend last week in Bucharest and online under the banner “Building bridges”, bringing together 544 participants from 42 countries.
On the agenda are over 250 presenters (187 oral presentations, 38 quick oral presentations and 63 poster presentations), sharing their research, knowledge and experience in an atmosphere of true collaboration and solidarity.
Iva Holmerová, Chairperson of Alzheimer Europe, opened the conference. She extended a special welcome to the 22 people with dementia among the delegates, as well as their supporters. Echoing the theme of the conference, she said, “we hope to ‘build bridges’ across European borders, to ensure that good practices in dementia care and innovations in diagnosis and treatment are made equally available across the whole European continent.”
As our countries are slowly emerging and recovering from the impact of the COVID-19 pandemic, our continent has unfortunately seen the return of war. However disheartening, she stressed that she was encouraged by neighbouring countries welcoming Ukrainians fleeing the conflict and by organisations doing their best to support refugees with dementia and their carers.
She highlighted the vital work of the European Working Group of People with Dementia (EWGPWD), noting the 10th anniversary of the group this year, singled out the fantastic collaboration that Alzheimer Europe has developed with the INTERDEM network, and expressed the organisation’s gratitude to its corporate conference sponsors, Biogen, Lilly, PAVE and Roche.
In closing, she informed delegates of her decision to step down from the position of Chairperson on Alzheimer Europe. “The organisation has grown a lot in my time here and I am very proud of our achievements, not least of which is our success in truly giving a voice to and integrating people with dementia in all our work”, she stated. She also warmly congratulated her successor, Rosário Zincke dos Reis from Portugal, who was elected at our Annual Meeting today, as her successor. “I am sure that the association will continue to grow and flourish under the new leadership and I wish all of you a very successful and interactive conference”, she concluded, and gave the floor to the next speaker.
Following these opening words, delegates were also welcomed by Diana-Loreta Păun, Presidential Advisor, Romania, who noted that we are currently in the UN Decade of Healthy Ageing, but that dementia is a leading cause of death as well as of disability. She stressed the importance, therefore, of working together, to improve the delivery of care for people with dementia, stating that “this is the opportune time for us to build bridges, to ensure good international collaboration”. She also said that “it is vital that we ensure the medical community is provided with the most up to date information available”, in order to achieve this goal of better care delivery.
Chris Roberts was next up to the lectern, addressing delegates in his capacity as a person living with dementia and as the Chairperson of the EWGPWD. He urged those present not to make assumptions about him and other people with dementia. “Speak to me, ask me, and understand me! I still have a voice and opinions of my own”, he emphasised. “I am still a person even though I am living with dementia”. He also highlighted the importance of working together and of involving people with dementia in all our work, calling to mind the slogan “Nothing about us without ALL of us!” He continued by giving thanks to everyone present, for the assistance, support, services, information, research and understanding afforded to people living with these “cruel and life changing brain diseases”.
Marjolein de Vugtspoke on behalf of INTERDEM (Early detection and timely INTERvention in DEMentia). “Building strong bridges between research and practice is key to sustainable implementation of innovations, and there is much to gain for both researchers and society”, she said. She also stressed that “strengthening intergenerational connections in dementia research and society will help to build a better future for people with dementia”.
Cătălina Tudose, Chairperson of Societatea Română Alzheimer welcomed everyone warmly to the conference and to Romania. She also thanked Alzheimer Europe for the guidance and support over the years since her association joined, in 1994. “Many things have changed throughout these years”, she said, but one of the things she wanted to draw particular attention to, in terms of evolution, was that she felt Alzheimer Europe has been able to provide a “unique structure” and an example, due to its involvement of people with dementia in all of its work.
Building bridges – Promoting good dementia care through pan-European collaboration
The opening ceremony was followed by a keynote presentation delivered by Alexander Kurz (Klinikum rechts der Isar, Technical University of Munich, Germany). He began by pointing out that many national health and social systems in South Eastern Europe are not prepared to meet the challenge of the rapidly rising number of persons living with dementia which is predicted over the coming decades. He also noted their limited ability to provide a good standard of care, due to a lack of public awareness of dementia, outward migration of skilled health workers, insufficient knowledge and cooperation among professional groups, and weakening traditional familial support.
He then said that European collaboration can make significant contributions to improving dementia care in the region, and mentioned several examples of EU-supported collaborative projects. He went into further detail, noting that “transnational collaboration can help to overcome gaps and barriers in dementia by sharing a person-centred model of care, promoting comprehensive and proactive forms of management, developing novel tools and services, taking steps to put dementia higher on political agendas, and advocating for national dementia strategies and plans.”
He pointed out, however, that while there is a wealth of excellent ongoing collaborative projects, these projects do not, in themselves, automatically improve dementia care. Indeed, most do not survive the end of funding, he said, and insisted that “more attention needs to be given to knowledge translation from projects to practice, to dissemination, implementation and sustainability. This requires careful planning, smart delivery and intensive networking.” Bridges need to be built from projects to peers, policy makers and other stakeholders, he concluded.
Poster presentations, parallel sessions and welcome reception
Following the opening ceremony and the keynote lecture, delegates were able to view poster presentations, exhibited in the conference centre and to speak to poster presenters about their research. They also had the chance to join one of five parallel sessions. There was one on technology, one on timely diagnosis and one on arts and culture. A fourth was on the topic of “Smart Bear European Big Data Ecosystem, related innovative technologies for Aging in place – SHAFE – Living Active Strategies”, organised by Ana Aslan International Foundation, while the fifth parallel session was organised by INTERDEM and looked at “Applying an intersectional lens in dementia care research”.
After a short break, a further five parallel sessions were held. One of these looked at dementia-friendly initiatives, while another explored psychosocial interventions and a third delved into carer training and support. The fourth was organised by Societatea Română Alzheimer and was about “Developing educational resources for interprofessional collaboration in the area of dementia”, while the final session was an opportunity for delegates to hear a series of 14 Quick Oral Presentations. To close day one of the conference, a welcome reception was held in the foyer, with musical entertainment provided by Cvartet ANIMA.
Moving beyond the COVID-19 pandemic
The second plenary of the conference was on “Moving beyond the COVID-19 pandemic” and was chaired by Alzheimer Europe Vice-Chairperson Charles Scerri.
Bernd Heise, Vice-Chairperson of the European Working Group of People with Dementia (EWGPWD) shared his lived experience of adapting to the COVID-19 pandemic as a person with dementia. He was keen to emphasise that people with dementia are still individuals and have valuable knowledge to share. Despite the difficulties and hurdles encountered due to the pandemic, he continues to stay as active and as healthy as possible, and intends to do so for as long as possible. “I will not give up!” he concluded.
Clarissa Giebel from the University of Liverpool was next to take the floor, with her presentation “Who cares for the carers? The long-term impacts of the pandemic on dementia carers”. She highlighted the extent to which carers have been neglected, not only during the pandemic but also before it and since. Most are without any respite or support, she pointed out, and insisted that “now, more than ever, we need to put support systems in place that support the carer in their own right, as an individual with their own needs, to live well and support the person they care for to continue to live well.”
The final speaker in this plenary session was Brigitte Juraszovich, Senior Health Expert at the Austrian Public Health Institute, who spoke about implementing the Austrian dementia strategy during the COVID-19 pandemic. She began by saying that, during the pandemic, most of the support and communication with people with dementia took place online, and that participation of people affected by dementia in the implementation of the dementia strategy worked quite well, via online discussions and video conferences. Indeed, she and her colleagues found that “involving people affected by dementia in strategic processes leads to targeted and needs-based planning and implementation of measures” and that “their involvement was especially valuable during the pandemic, where it was crucial to develop solutions tailored to the needs of different target groups in a constantly changing and uncertain environment.” It came to light that one of the most important issues for persons with dementia and their carers was, that ‘health’ needed to be viewed and discussed in a comprehensive way (bio-psycho-social-approach), with any impact of measures and interventions on social relationships and connectedness being vital to take into account (e.g. avoiding loneliness and social isolation).
After the plenary, delegates were able to view poster presentations, exhibited in the conference centre and to speak to poster presenters about their research. They also had the chance to join one of five parallel sessions. There was one on brain health and dementia prevention, one on residential care and one on young onset dementia. Another, was organised by the RECage project (REspectful CAring for the AGitated Elderly), in which the project conclusions were shared, while the final session was an opportunity for delegates to hear a series of 12 Quick Oral Presentations.
Brain health and prevention
The third plenary of the conference covered topics related to brain health and prevention, and was chaired by Marjolein de Vugt from Alzheimer Center Limburg, Netherlands. A presentation on “Increasing awareness of dementia prevention through public campaigns” was delivered by Jan Steyaert, Scientific Officer at the Flemish centre of expertise on dementia and Professor in the department of social sciences at the University of Antwerp, Belgium. He explained that research over the past decade has clearly shown that there are modifiable risk factors for dementia and that “We can slow down the future increase of dementia by focusing on these.” He pointed out that this adds a third challenge to the work being done in this area, because, in addition to developing good dementia care and looking for pharmaceutical solutions, it is also clear that it is necessary to work on primary prevention, on promotion of a brain healthy lifestyle. “As dementia care organisations, we need to outreach and build strategic alliances with public health organisations on a local and (inter)national level”, he said.
Primary prevention of dementia was the focus of the next speaker, Edo Richard from the Radboud University Medical Centre, Nijmegen, Netherlands. In answer to the question “What is the way forward, in primary prevention?” his presentation showed that, where dementia risk factors are concerned, lower may not always be better and that “we need to rethink the design and evaluation of individual dementia risk reduction strategies.”
The final presentation in Plenary was called “From assessing risk to communicating risk” and was given by Wiesje van der Flier, Scientific Director of the Alzheimer Center Amsterdam. She emphasised that “risk and probabilities can be difficult for patients to understand, and equally difficult for clinicians to explain. Yet, patients increasingly want information and clinicians need tools and training to support them in communicating risk.” She also noted the importance of learning from other fields that have experience with communicating risk and the inherent uncertainty that comes with it, such as oncology or cardiology. Best practice examples include use of plain language, precise numerical risks, and graphical representation, she noted. She also said that the “teach-back” method helps to check understanding. Finally, she stressed that “in the debate about communicating risk based on biomarker information, we often tend to forget that there is particular value in negative biomarkers giving a powerful message that risk of progression is low.”
The conference programme for day two ended with a special symposium on “Rethinking the early detection and diagnosis of Alzheimer’s disease”, organised by the European Brain Council and the European Federation of Pharmaceutical Industries and Associations (EFPIA) and featuring Kevin Quaid, Vice-Chairperson of the EWGPWD.
Building bridges across Europe
Plenary four opened the conference programme on this final day, and comprised four presentations revolving around the theme “Building bridges across Europe”. The session was chaired by Alzheimer Europe Chairperson Iva Holmerová.
Cătălina Tudose, President of Societatea Română Alzheimer (Romanian Alzheimer Society), discussed “Progress of Dementia Care System in Romania as a Consequence of European Integration and Support”. She gave an overview of the history of the Romanian Alzheimer Society, which was set up in 1992, and joined Alzheimer Europe as a full member in 1994. Initially, she said that her organisation’s main goal was to focus on practical things, because there was so much to do. She expressed her gratitude to alzheimer Europe and other European and international organisations for their guidance and support over the years, and especially in the early days, helping to re-focus some of their efforts on policy, as well as practical support, as the latter should be provided and funded by governments. Their focus has also shifted from supporting older people in general, to people with dementia and towards promoting earlier diagnosis, reducing stigma and ensuring the national dementia strategy is carried out.
Up next, Iryna Shevchenko, Founder and Director of Nezabutni charitable foundation, Ukraine, spoke about the impact that the ongoing war in her country is having on people with dementia and their families. “It is important to minimise the factors that influence the symptoms and psycho-emotional state of people with dementia”, she stressed, listing three main factors, which were: a person’s understanding about the ongoing war; changes in their usual environment; and changes in their routine. She gave details about the incredible ongoing efforts that her organisation, other organisations, and individuals are making, to try to ensure that people have access to medicine, to information, and to online care, at a time when face-to-face care is not possible.
Adrianna Senczyszyn from Wroclaw Medical University, Poland, took the floor next, to share her presentation with delegates, which was called “Between frozen dementia care in Ukraine and building bridges in Europe: the experience of Poland”. She began by saying that her organisation is “still at the beginning of the road. A lot has been done but we still have so many things to do.” Despite this statement, the work that she presented, which was being done in international projects, for example, was considerable, until 24 February 2022, when Russia waged war on Ukraine. Since that time, “normal operations” have halted, for the most part, and vast humanitarian aid efforts are being made in Poland, and in other countries in Central and Easter Europe, to support Ukraine and Ukrainian refugees fleeing the conflict. She hopes that this war will end very soon and that their focus can return to supporting people living with dementia.
Cassie Redlich, Technical Officer, Mental Health Flagship, WHO Regional Office for Europe (Denmark) was the final speaker in this plenary, and discussed “Opportunities for improving dementia care and support through the Pan-European Mental Health Coalition”. The WHO pan-European Mental Health Coalition, she explained, “harnesses the collective wisdom and expertise of our diverse members to accelerate implementation of the WHO European Framework for Action on Mental Health 2022-25.” The Coalition mobilises key stakeholders – including those living with dementia and their carers – to “drive momentum for reducing stigma and ageism, improving care and increasing investment”, she said.
Afterwards, attendees were invited to take their coffee break as an opportunity to view the many and varied poster presentations exhibited in the conference centre. They then had the choice of five parallel sessions, including one on home care and support, one on non-Alzheimer’s dementias, and one on public involvement in dementia research. Another, organized by Societatea Română Alzheimer, was titled “Increasing support for people with dementia and their caregivers through four international projects”, and the fifth session, organised by INTERDEM, was billed as an “Early career researcher seminar by INTERDEM Academy and ISTAART PEERs: Sharing best practices to support early career dementia researchers: A World Café”.
During the lunch break, two special symposia took place. “Warm Technology in the ECDT” was held by Alzheimer Nederland, while the symposium “Community matters: Developing Alzheimer’s clinical trials together” was organised by Roche. During Roche’s symposium, the company launched a new report on “Integrating the perspectives of people living with Alzheimer’s disease and their study partners into clinical trial development. Alzheimer Europe is pleased to have collaborated on the development of this report.
The afternoon programme began with another opportunity for delegates to choose from a further five parallel sessions. One examined the topic of intellectual disability, while another delved into the needs and experiences of people living with dementia. A third session looked at cross-border dementia initiatives, and a fourth was another INTERDEM-organised session, this time on “Social health: explorations of its potential to prevent cognitive decline and dementia”. The final parallel session was an opportunity for delegates to hear a series of 10 Quick Oral Presentations.
Reprioritising dementia as a care, policy and research priority
The fifth and final plenary session at the conference, took the form of a roundtable discussion, chaired by Alzheimer Europe’s Executive Director Jean Georges. The discussion revolved around “Reprioritising dementia as a care, policy and research priority” and panellists were: Charles Scerri, Chairperson of the Malta Dementia Society, Vice-Chairperson of Alzheimer Europe and National Focal Point on Dementia in Malta; Katrin Seeher, Mental Health Specialist (Brain Health), World Health Organization; Cătălina Tudose, President, Societatea Română Alzheimer; Myrra Vernooij-Dassen, professor at the Radboud University Medical Center; and Gunhild Waldemar, professor of clinical neurology at the Faculty of Medicine and Health Sciences, University of Copenhagen and chair of the Danish Dementia Research Centre (DDRC) at Rigshospitalet in Copenhagen, Denmark.
As part of his contributions to the discussions, Charles Scerri stressed that “it is our duty, as policy makers, to ensure that dementia remains at the very top of our health and social care priorities”. He also stated that “the future, and hope for all those living with dementia, lies in our research efforts and the money we’ll put into this.”
Panellist Katrin Seeher noted that only one in four countries have national dementia plans. Governments need to accelerate efforts to develop, fund and implement comprehensive national policies and re-commit to making dementia a public health priority, she said. She also emphasised that dementia policies and services continue to fall short, especially in low- and middle-income countries, and that, in order for our global response to be successful and equitable, “multisectoral actions must be coordinated within and across WHO Member States and Regions.”
Myrra Vernooij-Dassen stressed the importance of implementing psychosocial interventions, based on the needs of people with dementia and their carers. She also highlighted the importance of focusing on new priorities, which, she suggested might include the recognition of social health as a specific area of epidemiological and intervention research. Research into biopsychosocial mechanisms of interventions was another point of focus in her contributions to the discussion, which she felt could help us to learn more about why and how interventions work.
Gunhild Waldemar’s contribution to the roundtable discussion revolved around what has been learned from the COVID-19 pandemic. Infections, she underlined, are associated with a much higher mortality rate in people with dementia, as compared to people without dementia. She also noted that social interaction is of key importance for people with dementia. Finally, she also pointed out that “with delayed diagnosis, many people with dementia and their carers risk unnecessary decline in function and will not get sufficient support”.
Cătălina Tudose spoke about how dementia services in Romania changed during the pandemic and noted that there were some positive changes, such as the development and normalisation of online interactions with clinicians. When asked whether there were things that might be beneficial to keep in place after the pandemic, she said: “For me, the hybrid way of working. It strengthens relations. It’s a bridge. The theme of the conference is ‘Building bridges’, and I think we should keep that one in place”.
La revedere, București. Hei, Helsinki!
The closing ceremony of the conference included the announcement of the winners of the Anti-Stigma Award. Congratulations to the winning initiative, “Adoptieproject: Jong adopteert Oud” and to the other two short-listed entries “Non ti scordare di volermi bene” and “Changing perceptions of dementia in the Punjabi community”, which placed second and third, respectively. The trophy and prizes were awarded by Alzheimer Europe Chairperson, Iva Holmerová. She also announced the winners of the poster competition, which are awarded each year by the Alzheimer Europe Foundation. This year, the top two virtual poster presentations, as voted by conference participants, were:
- First place: VPOS-02 “Computer Technology: What do people with lived experience of dementia think?” Main Author: Abigail Rebecca Lee, University of Nottingham, United Kingdom.
- Runner up: VPOS-10 “The Experiences of Post Diagnostic Support for people who have Dementia with Lewy Bodies and their unpaid carers: A Qualitative Systematic Review using meta-ethnography” Main Author: Claire Rischmiller, Norfolk and Suffolk NHS Foundation Trust, United Kingdom.
The top two posters at the conference venue in Bucharest, as voted by conference participants, were:
- First place: POS1-03 “Staying socially connected through the design of a bespoke virtual environment for older adults living with dementia” Main Author: Aisling Flynn, NUI Galway, Ireland.
- Runner up: POS3-16 “Towards a dementia friendly hospital” Main Author: Alain Bérard, Fondation Médéric Alzheimer, France.
The winners will be awarded EUR 750 each and the runners-up EUR 250 each.
Closing comments were made by Cătălina Tudose, President, Societatea Română Alzheimer (pictured, left) and Rosário Zincke dos Reis, Chairperson-elect, Alzheimer Europe (pictured, right) who then invited Katariina Suomu, Executive Director of Muistiliitto, the Alzheimer Society of Finland, who welcomed attendees to the 33rd Alzheimer Europe Conference in Helsinki, in October 2023.
Alzheimer Europe would like to thank to all delegates who joined us at #32AEC, and we hope to see you next year for #33AEC in Helsinki!
For more information on the conference visit www.alzheimer-europe.org
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