33rd Alzheimer Europe Conference brings people with dementia to the fore at its first plenary session organised and presented entirely by members of the European Working Group of People with Dementia
Helsinki, 17 October 2023 – The 33rd Alzheimer Europe Conference (#33AEC) “New opportunities in dementia care, policy and research” was formally opened yesterday afternoon. The conference is taking place as a hybrid event, with delegates and presenters able to join either on site at the Messukeskus Helsinki Expo and Convention Centre or online, with the aim of ensuring the event is as accessible, inclusive and interactive as possible. A record number of over 1,100 participants (1,000 of these in person) from 48 countries are attending the conference, which is taking place from 16 to 18 October 2023.
Rosário Zincke dos Reis, Chairperson of Alzheimer Europe, opened the conference. She extended a special welcome to the 56 people with dementia among the delegates, as well as to the 66 carers/supporters in attendance. “I am delighted to note that we have a record number of participants at this year’s conference, with over 1,100 people joining us today, in person and online”, she said. She also thanked Alzheimer Europe’s sponsors, including Gold sponsors, Lilly and Roche and Bronze sponsors, BioArctic, Eisai, MSD and Prothena.
To make a better world for people with dementia, all our efforts must be focused in three main areas, she stressed. Firstly, we need to focus on finding and implementing better practices when providing care, along the disease pathway. All the while, we need to invest in research into better pharmacological and non-pharmacological treatments. Finally, we must also fight to ensure that dementia is recognised as a public health priority, both at European and national level and that specific policies are put in place, accordingly.
On the morning of 16 October, prior to the start of the conference, the Annual Meeting of Alzheimer Europe adopted the “Helsinki Manifesto”, which contains a comprehensive range of measures and actions across the key areas that have the greatest impact on the lives of people with dementia, their families and carers. “It is proof”, said Rosário Zincke dos Reis, “of our commitment to achieve our goals, always with the involvement of people with dementia, ensuring their voice is listened to in everything we do.” In closing, she commented that she felt sure that this Manifesto would be another highly meaningful milestone for the European Dementia Movement.
Following these opening words, delegates were addressed by Jenni Kulmala, Chairperson of Muistiliitto and Associate Professor of Gerontology, Tampere University, Finland, who noted that 26 years had passed since Alzheimer Europe first held an Annual Conference in Helsinki. While dementia still poses one of the biggest health challenges we face in an ageing society, she said, it is important that we should also take note of the steps forward that we have taken together over the last decades:
• Advances in science have provided better understanding of biological origins of dementia, its types, symptoms, diagnosis and care.
• We also know how we can promote brain health during the whole life course and possibly delay the onset of dementia.
• In addition, the voices and views of people living with dementia are better heard.
“The Alzheimer Europe conference is a place where we can take new steps forward. We will have dialogue between dementia researchers, healthcare professionals, policymakers and non-governmental organisations. Ultimately, multi-professional collaboration is the key to a more dementia-friendly world”, she said and stated that “Finland is paving the way in dementia prevention research, and we also want to be a country where research meets practice”.
Kaisa Juuso, Minister of Social Affairs and Health, Finland, was next up to the lectern, addressing delegates on the topics of early detection of memory problems, research work and respect for people with memory disorders. In order for us to be able to meet the growing demand for services and the rising costs, we need action to promote brain health, prevent memory disorders and detect memory problems as early as possible, she stated, noting that there are currently 200,000 people with memory disorders in Finland.
The Minister also commented that the Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER) had shown that it is possible to prevent memory disorders by managing the risk factors associated with them, when people follow a multidomain lifestyle programme. This can improve cognitive functions in older people, she insisted, and can also prevent memory decline. The FINGER model will be implemented as a preventive measure throughout Finland.
She stressed that the most important thing is to ensure we treat older people with respect for their right to self-determination, and that we provide them with services that meet their needs, support their inclusion and make their lives as good as possible. “We need to learn how to engage with people with memory disorders and treat them with respect for their human dignity”, she said. She also noted that the Conference would be a great opportunity to engage in extensive networking and that the event was an important step towards showing a stronger respect and appreciation for the views of people with memory disorders. “By working together, we have better opportunities to raise memory disorders as an important societal issue”, she said, before giving the floor to the next speaker.
Marjolein de Vugt, Professor of psychosocial innovations in dementia at the Alzheimer Center Limburg, Maastricht UMC+ addressed delegates in her capacity as Chairperson of INTERDEM (Early detection and timely INTERvention in DEMentia). “Focusing on everyday transformations to improve the lives of people living with dementia has the potential to reshape the landscape of dementia care, influence policy development, and cutting-edge research, emphasising the importance of psychosocial innovations”, she said.
She also noted that, as the search for major breakthroughs continues, it is important to recognise the positive impact of psychosocial research and innovations in dementia:
"In our pursuit of major breakthroughs, let's not underestimate the profound transformative impact of psychosocial research. Alzheimer Europe and the INTERDEM network play a crucial role in fostering shared purpose, offering unique platforms for collaboration, learning, and inspiration to reshape the landscape of dementia care, influence policy development, and cutting-edge research”, she concluded.
Sirpa Pietikäinen, Member of the European Parliament (Finland) and Chairperson of the European Alzheimer’s Alliance welcomed everyone warmly to the conference and to Finland. During her speech, she stressed that dementia care needs to be more and more person-centred, integrative and transformative. She also emphasised the need to take technology and its opportunities into account. “These are the new avenues for better care for memory-disabled persons in Europe”, she said.
Petri Lampinen was the final speaker at the Opening Ceremony and spoke on behalf of the European Working Group of People with Dementia (EWGPWD). Petri is from Finland and has been a member of the EWGPWD since 2017. Chris Roberts, Chairperson of the EWGPWD translated Petri’s words into English.
In his speech, Petri Lampinen pointed out that we all participate in the conference in many roles, but that what unites us all is our desire to advance dementia issues and the many future solutions related to it. In the coming years, times will be challenging, he said, because of the increasing numbers of people with dementia. It is worthwhile, therefore, to conduct active research and to invest in citizens' brain health and make people aware of its importance.
We also need to educate decision-makers about the importance of these issues in society. “We who are diagnosed with dementia, want to make a difference with our loved ones in these matters. Because we can raise the issues, to the best of our ability. We can speak up for our rights. We have already been genuinely listened to and our opinions have also been valued. This has felt very good!”
He expressed his gratitude to Alzheimer Europe, its member associations and to dementia organisations the world over, for supporting people living with dementia. “Through them, we get to experience many activities. Without their existence, we wouldn't know where we are going. They pave our way and show us the right direction to go.”
He was delighted to share that, together with his colleagues in the EWGPWD, he has been involved in a lot of projects and surveys. “Year after year”, he said, “we feel more part of society”.
In closing he reminded delegates that together, we can change perceptions of living with dementia and reduce the stigma they cause. He was particularly keen to point out that a dementia diagnosis need not mean the end of life: “My advice is not to give up. It is worth going through the emotions, even the difficult ones.”
Welcome words from European Commissioners for Equality and for Health and Food Safety
Alzheimer Europe was delighted to have the support of EU Commissioners Helena Dalli and Stella Kyriakides, who each recorded a welcome video, addressing conference delegates during the Opening Ceremony.
In her address, EU Commissioner for Equality Helena Dalli particularly highlighted the European Commission's Strategy for the rights of persons with disabilities, which aims to ensure full participation of persons with disabilities in society and to prevent any discrimination based on the grounds of disability.
"To ensure that persons with disabilities can fully enjoy their rights, the Strategy sets out seven flagship initiatives, one of which is the recently-proposed European Disability Card, which aims to facilitate the right of free movement for persons with disabilities in the EU", she said. She also pointed out that when persons with disabilities travel to other Member States for short-term stays, card holders would benefit from the same preferential conditions when accessing services as are granted to residents of the Member States due to their disability.
Finally, Commissioner Dalli reminded delegates that in June 2023, the Commission had adopted a Communication on a Comprehensive Approach to Mental Health. “This is a starting point for a more holistic and ambitious approach, that goes beyond the health sector and identifies numerous funding opportunities. Its 20 flagship initiatives and key actions, backed by over EUR 1.2 billion in funding, cover areas in health policy and beyond”, she said.
You can watch Commissioner Dalli’s video, here: https://youtu.be/_bUKC8rvdMnA
EU Commissioner for Health and Food Safety Stella Kyriakides began by thanking Alzheimer Europe and its members, for their dedication in tackling dementia and in supporting people living with dementia, their families and carers.
“I assure you, that you are not alone in your efforts and we stand ready to support you in practical and concrete ways”, she said. “This is the solidarity that characterises the strong European Health Union that we are building and the priority to build better health for all citizens, regardless of their health challenges.”
Echoing Helena Dalli, she also highlighted the Commission’s Communication on a Comprehensive Approach to Mental Health, an initiative which aims to put mental health on par with physical health and to ensure a new, cross-sectoral approach to mental health issues. The funding for this initiative covers the areas of prevention, early detection, strengthened research on brain health and breaking down stigma, prejudice and discrimination. Commissioner Kyriakides also mentioned the “Healthier Together” initiative launched in June 2022, which has one specific strand focused on neurological disorders and emphasises the need to make societies and communities more dementia friendly.
Commissioner Kyriakides noted, too, the EU Best Practice Portal and some of the best practices on health promotion, all of which are publicly available on the portal. Financial support is being provided by the EU4Health programme, she noted.
In closing, she said that governments and public health authorities alone cannot tackle the mental health burden on society and that the views of people with dementia and their families must be included in policies and research on treatment and care. A joint effort is vital, she reminded delegates, in order to deliver new opportunities in dementia care, policy and research.
You can watch Commissioner Kyriakides’ video, here: https://youtu.be/_JHiqgcuj7M
Transforming personal experiences into political advocacy and Public Involvement in dementia research
The opening ceremony was followed by the first plenary session of the conference, which showcased the work conducted by the European Working Group of People with Dementia (EWGPWD) in relation to Public Involvement (PI) in dementia research and advocacy. Speakers drew on their personal experiences, both at national and European level.
This session was the first plenary session of its kind, organised, chaired and presented entirely by people living with dementia and Alzheimer Europe is extremely proud to be able to include this special and important plenary in its 2023 conference programme. The work of the EWGPWD and the collective voice of its members are vital to the organisation’s work and this long-standing collaboration continues to flourish.
This plenary session was chaired by Chris Roberts (Wales, United Kingdom), Chairperson of the EWGPWD, who presented the group and some of its main achievements over the years. “I’m very honoured to be the current Chairperson of the European Working Group of People with Dementia and am so proud to welcome you to the first Alzheimer Europe Conference plenary session entirely organised and presented by our group”, he began.
The EWGPWD was launched by Alzheimer Europe and its member associations in 2012 and the group celebrated its 10-year anniversary last year, he noted. Members of the group work to ensure that the activities, projects and meetings of Alzheimer Europe duly reflect the priorities and views of people living with dementia and as part of this, they do a lot of PI work with researchers across many different projects, sharing their vital insights, as experts by experience.
As well as actively participating in Alzheimer Europe's Annual Conferences, he informed the audience that the group, which is composed entirely of people living with dementia, with different backgrounds, different diagnoses and of various ages, also gives presentations and participates in other events and meetings, both in the members’ own countries and internationally.
Members are nominated to the group by their national Alzheimer associations. There are currently 15 members, four of whom are the keynote speakers at this first plenary of the Alzheimer Europe Conference in Helsinki, he said and introduced the first of the four pspeakers, Kevin Quaid.
Kevin Quaid (Ireland), Vice-Chair of the EWGPWD, focused on his experience of PI in Ireland and the impact of such involvement on dementia research and on his personal life. “I am not an expert in too many things, but I am an expert in what it’s like to have Lewy Body Dementia. No matter what you are doing in life, you need to listen to the experts and here in the EWGPWD there is a world of expertise on what it’s like to live with different types of dementia”, he said and insisted that when it comes to PI, the people with the lived experience must be front and centre, in research.
Being an advocate for the past seven years, Kevin Quaid has seen a major change in the way research is done and in how people like him are viewed when it comes to research. Not so long ago, he pointed out that “good PI work meant that a researcher would ask us a question or two and that was considered enough”. Involving someone with dementia was nothing more than a ‘tick-box’ exercise, but he was pleased to say that researchers have now realised how much people with dementia have to offer. He used to think it was “nice” and “kind” for people to involve him and others with dementia in research - “and it is!” he noted - but now he has realised what he brings to the table: Experience, motivation, insight, novel ideas and the willingness to share information.
In conclusion, he implored researchers:
“Invite us into the research space, listen to our insights and we will help you keep your focus on the real-world impact your work can have on someone. It’s not to put pressure on you, we are just invested in your work and your research in a different way to you. We have insights that can help. We can help you consider things you maybe hadn’t thought of before. And if we don’t understand something, we’ll let you know. PI improves research and therefore it can improve lives.”
Pia Knudsen (Denmark) was up next. She introduced herself and after sharing that she has two children, loved her job as a teacher for many years and is a keen and talented artist she also mentioned, “by the way, I am here today because I was diagnosed with Alzheimer’s disease back in 2020.”
Something that has been particularly important to her since she was diagnosed is getting involved in a lot of different political, cultural, and informational contexts. As one of the newest members of the EWGPWD, she is delighted to have already been involved in several projects. and believes it is incredibly important to involve people with dementia in everything that has an impact on them.
“It gives me SO much energy and purpose to use my voice and raise awareness”, she enthused and highlighted that it was a complete misconception that people with dementia are all living in nursing homes and cannot hold a conversation:
“Here I am, in flesh and blood. I am just a human being struggling with a difficult life situation. Otherwise, I am fully functioning. Almost. After losing my beloved job as a teacher when I was diagnosed, I now have a new job as a spokesperson for people with dementia – but I must emphasise that it has only been possible because of people believing in me and helping me to get involved.”
Based on her experience, she noted three important points about involving people with dementia:
• Listen to people with dementia. They are the ones experiencing dementia from within.
• Create the framework and foundation that gives people with dementia the possiblity to get involved. A practical coordinator/facilitator who understands the challenges and is keen on listening is important.
• Take action, move beyond the talking stage. Make the words matter and implement the opinions and experiences shared, so they impact on real lives.
In closing, she said:
“I know that there is a long way to go and that it takes time. We are not even close to making voices of people with dementia matter all over the world. But if we all start to whisper, eventually it will become a loud roar.”
The next speaker, Věra Ryšavá (Czech Republic) talked about her experience contributing to the work of the Czech Alzheimer Society to raise awareness and tackle the stigma of dementia in her country, as well as their efforts to ensure that issues of relevance to the lives of people with dementia are taken on board by policymakers. She opened by sharing her personal experience following her diagnosis:
“After my diagnosis, I didn't live, I just survived, crying at night, thinking about the information about Alzheimer's disease that I had known from the press and TV up to that point - unfortunately, it was mostly information about the last stages of the disease. It wasn’t until I discovered the Czech Alzheimer Society and then Alzheimer Europe, that I began bounce back. Now I'm kind of internally reconciled with my illness and thanks to a timely diagnosis, I have the opportunity to organise my future.”
Through the EWGPWD, she now feels able to understand her diagnosis better, to get answers to her questions but also to contribute, sharing her knowledge and feelings. Through the Czech Alzheimer Society, she also contributes to the National Action Plan for Alzheimer's and Similar Diseases, in the Czech Republic.
She thanked the audience, saying that she greatly respects and appreciates people who are trying to change the current (but in her eyes, still insufficient) situation in care and who provide help for people with dementia so they can live their lives with dignity.
The last speaker was Nigel Hullah (Wales, United Kingdom), who reflected on the relevance of PI for local and national initiatives and how such involvement can give people with dementia a purpose, a sense of belonging and hope. PI, he said, is significant when making decisions that affect a community. It is vital that everyone has their voice heard. An active and well-supported PI approach allows people to engage in meaningful and genuine co-production and allows everyone involved to share responsibility and power in a reciprocal and supportive manner. The outcomes, he stressed, can be hugely empowering for all concerned, helping create a more inclusive and supportive society.
“I always feel better after participating in a PI event because I've been focusing on my sense of worth. It's a complex process, but it's worth it. When I feel good about myself, I'm much more confident and capable of achieving my goals. To be listened to, really listened to, is a transformative experience in a world where the deficit agenda of dementia looms large. Dementia can be challenging for anyone to deal with and particularly difficult for individuals who struggle with self-worth. It's essential for people affected by dementia to remember that their dementia does not define their self-worth and that they are still valuable and crucial members of their community.”
Addressing the audience and especially the researchers in the room, he said, “please ask us not what you can do for us but how we can work together by engaging with us and recognising us as contributing members of society.”
The plenary session ended with a standing ovation for the speakers.
Poster presentations, parallel sessions and a Welcome Reception at City Hall
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 eight parallel sessions. After a short break, a further eight parallel sessions were held.
To close day one of the conference, a Welcome Reception was held at Helsinki City Hall, hosted by the Mayor of Helsinki.
Prior to the conference, Alzheimer Europe also hosted a networking event and information session, plus a tour of the conference venue for delegates with dementia.
Alzheimer Europe Annual Meeting adopts “Helsinki Manifesto”
Prior to the opening ceremony, a number of ancillary meetings took place at the conference centre in Helsinki. Alzheimer Europe organised its Annual General Meeting (AGM) with representatives of its national member organisations. 33 out of 36 full members were in attendance or were represented. During the AGM, the “Helsinki Manifesto” was adopted. The Helsinki Manifesto sets out the current position of dementia in Europe as well as calling for actions in four main areas: health, research, disability and social rights, and informal carers. The document will be officially launched along with a public call for action and our 2024 European Parliament election campaign (Dementia Pledge 2024), at our next European Parliament lunch debate in Brussels, taking place in December 2023.
The Alzheimer Europe AGM also celebrated the organisation’s achievements in 2022 and shared its plans for 2024 and its 2022-2023 finances with meeting participants and observers.
Both the Chairperson of the EWGPWD, Chris Roberts and the Chairperson of the European Dementia Carers Working Group (EDCWG), Sonata Mačiulskytė (Lithuania) then addressed the attendees of the meeting and following their speeches, the meeting closed with the AGM unanimously adopting Alzheimer Europe’s 2024 Work Plan and Budget.
INTERDEM network hosts its Annual Meeting in Helsinki
INTERDEM is a network of researchers interested in psychosocial interventions. It is made up of 229 researchers and academics with different professional disciplines, spread across 21 countries (19 of which are in Europe). The INTERDEM network held its Annual Meeting at the conference centre in Helsinki on 15 and 16 October 2023, just prior to #33AEC.
The meeting kicked off with a welcome from INTERDEM Chairperson Marjolein de Vugt to all researchers present. Then there was an introduction to new members and a keynote presentation delivered by Justine Schneider in a session chaired by Myrra Vernooij-Dassen. The keynote discussed “Working with artist to communicate research findings: examples from film, theatre, cartoons and opera”. The AGM also looked back at some highlights from the past year, as well as giving an update on projects and on the task force initiative.
Alzheimer Europe is proud to be a key partner of INTERDEM.
The European Working Group of People with Dementia (EWGPWD) and the European Dementia Carers Working Group (EDCWG) held meetings on 15 and 16 October in Helsinki
On Sunday 15 October, members of EWGPWD conducted a final practice session for their plenary session, titled "Turning Personal Experiences into Political Advocacy and Public Involvement in Dementia Research," scheduled for the 33rd Alzheimer Europe conference. They also provided input on the recommendations for the 2023 Alzheimer Europe Yearbook presented by Owen Miller (Alzheimer Europe) focused on legal capacity and supported decision-making. The following day, Monday 16 October, prior to the opening of the conference Angela Bradshaw (Alzheimer Europe) discussed Alzheimer Europe's position paper on anti-amyloid treatments. EWGPWD members worked on creating an easy-to-understand version of this document. Subsequently, Ana Diaz (Alzheimer Europe) moderated a conversation regarding inclusive travel for people with dementia, and members worked on developing some recommendations targeted at people with dementia.
On Sunday, members of EDCWG offered feedback on the Alzheimer Yearbook recommendations on legal capacity and supported decision-making. Clarissa Giebel, leader of the INTERDEM Taskforce "Inequalities in Dementia Care," then joined the meeting to present some of her research and gather input from group members. The EDCWG then made final preparations for their workshop session titled “When Care Homes Stop Caring”, held as part of the 33rd Alzheimer Europe Conference.
On Monday, Soraya Moradi Bachiller shared some of the work conducted as part of the Pattern-Cog project, for which the EDCWG serves as advisory group members. EDCWG expressed their perspectives on issues related to disclosing dementia risk and raising awareness about brain health. In the final part of the meeting, the EDCWG provided ideas on how to ensure that meetings and travel arrangements for people with dementia are inclusive.
Alzheimer Europe would like to extend a warm welcome to all delegates and remind everyone to use the hashtag #33AEC to join/follow the conversation on Twitter.
Alzheimer Europe gratefully acknowledges the support of all conference sponsors, with particular thanks to our Gold sponsors, Lilly and Roche and Bronze sponsors, BioArctic, Eisai, MSD and Prothena.