The first consultation held in 14 November gathered 17 members of the EU-FINGERS, LETHE and Multi-MeMo Advisory Boards who met for the very first time in person. Members came from nine European countries (Austria, Finland, Hungary, Italy, Luxembourg, Netherlands, Spain, Sweden, UK) to discuss topics around multidomain interventions to reduce dementia risk and communication tools for discussing risk of dementia with patients.

During this collaborative event, Alzheimer Europe took the opportunity to produce a series of video interviews. These interviews are with members of the Advisory Board members of the EU projects attending the meeting, researchers working on the project, the FNR programme manager and members of the European Working Group of People with Dementia (EWGPWD). They all shared their experiences working on the various projects and the vital contributions of the Advisory Boards ensuring that research accurately reflects the preferences, needs and priorities of members of the public and their perspectives in different aspects of research processes and outputs/results.

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The first consultation held in 14 November gathered 17 members of the EU-FINGERS, LETHE and Multi-MeMo Advisory Boards who met for the very first time in person. Members came from nine European countries (Austria, Finland, Hungary, Italy, Luxembourg, Netherlands, Spain, Sweden, UK) to discuss topics around multidomain interventions to reduce dementia risk and communication tools for discussing risk of dementia with patients. AE Project Officer Ana Diaz extended a warm welcome to all delegates, emphasised the importance of their presence and the pleasant spirit driving the meeting. Then, Sean Sapcariu provided valuable insights into the Luxembourg National Research Fund (FNR), the main funder of research activities in Luxembourg. Next, Francesca Mangialasche and Anna Rosenberg took the floor to provide a comprehensive update on the EU-FINGERS and LETHE projects. They reminded the aims and mission of each project and both emphasised the pivotal role of the Advisory Board members as essential partners to guide and influence relevant decisions on how the research activities are conducted.

The heart of the consultation unfolded through four workshops in small groups, facilitated by Anna Rosenberg, Leonie Visser, Tanja de Rijke and Heleen Hendriksen and co-facilitated by Francesca Mangialasche, Ana Diaz, Cindy Birck and Mariagnese Barbera. Members were engaged in dynamic discussions, exchanging thoughts and ideas on: 1) social activities in digital multi-domain interventions; 2) information needs on future Alzheimer’s disease medication; 3) a new tool to help patients and supporters to share personal information and 4) the implementation of tools to support preparation for memory clinic consultations.

Mariagnese Barbera concluded the event by presenting the overarching goals of the Multi-MeMo project and highlighting the continuity of Public Involvement work from EU-FINGERS to Multi-MeMo. The project partners would like to extend their heartfelt gratitude to all members of the Advisory Boards for their engagement, commitment and invaluable contributions.

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At this unprecedented event, taking place from 14 to 16 November, 44 members of the Advisory Boards of six EU-funded projects (EU-FINGERS, LETHE, Multi-MeMo, eBRAIN-Health, EPND and ADIS) all of which are working on different aspects of brain health and dementia research, will collaborate in a series of multi-project consultations. Members of these Advisory Boards, which are convened and moderated by Public Involvement leads at Alzheimer Europe, are people at a higher risk of, or living with, dementia, carers and supporters of people with dementia and other lay people with an interest in brain health and dementia prevention.

This will be the first collaborative meeting of this type and scale, uniting projects working on different aspects of brain health and dementia research, funded through the three largest research and innovation programmes in Europe: The Joint Programme on Neurodegenerative Diseases, Innovative Medicines Initiative, and Horizon Europe. The event will promote a collaborative approach to research and Public Involvement and will be an important opportunity for all of the projects represented, to share knowledge, experience, insights and ideas, with the aim of helping to move research forward, together.

The European Working Group of People with Dementia (EWGPWD) is involved in a number of projects through its work with Alzheimer Europe. Several members of the EWGPWD will travel to Luxembourg to participate in next week’s event. Some of them are also members of the Advisory Boards of these projects.

What is Public Involvement?
To ensure that research accurately reflects the preferences, needs and priorities of members of the public, their perspectives – including experiences and concerns – need to be included in different aspects of research processes and outputs/results. Public Involvement has been shown to improve the quality of research by enabling researchers to benefit from the lived experience of people with dementia but also other lay people (for example, people with Mild Cognitive Impairment (MCI), people at risk of developing MCI or dementia, carers/supporters of people with dementia). Public Involvement work helps ensure that research is ethical, transparent and gives people with dementia and other stakeholders with an interest in dementia research a voice, reflecting the principle of “nothing about us without us”.

What are Advisory Boards?
Advisory Boards are made up of lay people including, for example, people with Alzheimer’s disease or dementia, people with MCI, carers, and people at risk of developing MCI or dementia. These groups meet regularly to provide feedback and advice to researchers about various topics and issues linked to the research activities conducted by the project consortium.

Jean Georges, Executive Director, Alzheimer Europe, said:
“Alzheimer Europe is delighted and proud to host this important event, the first of its kind, and to champion the vital contributions that Advisory Boards are making to dementia and brain health research. Our organisation has been doing work in the area of Public Involvement, largely through our close collaboration with the European Working Group of People with Dementia, for many years (and, since 2022, with its new sister group, the European Dementia Carers Working Group). This work has made Alzheimer Europe a stronger organisation and has helped to steer our work in the right direction, by ensuring that people living with dementia and their carers/supporters have a voice. In recent years, we have extended our work in EU-funded research projects and it is truly fantastic to see the same principles applied and the same rewards reaped by researchers. Public Involvement helps shape better, more meaningful research outcomes and we hope this event will contribute towards moving research forwards but also highlight the importance of Public Involvement in research.”

Chris Roberts, Chairperson of the European Working Group of People with Dementia (EWGPWD), said:
“The EWGPWD is involved in several projects in which Alzheimer Europe is a partner. We receive lots of information and are extremely well supported about all projects, we are able to provide our perspectives and opinions to help ensure that the topics discussed are relevant to people with dementia. We also help to ensure that the way the research is conducted is appropriate and respectful to the participants who are living with dementia. It not only increases understanding, but helps enable researchers to adapt and revise their projects when new learning has taken place. Patient involvement can save time and money, as well as bringing valuable insight and advice to help guide the researchers in their work. Overall, the experience is very positive and mutually beneficial, it is really exciting to take part in this large-scale Public Involvement event in Luxembourg where we will at once contribute to multiple European research projects with our lived experiences.”

Francesca Mangialasche, Assistant Professor at Karolinska Institute (Stockholm, Sweden), coordinating centre for the EU-FINGERS project and a clinical partner of the LETHE project, said:
“The participation of Advisory Boards has been greatly beneficial for brain health research projects on many levels. This is also thanks to the ability of Alzheimer Europe to bring together clinicians, researchers and members of the public, facilitating meaningful involvement and communication.”

What will happen at this event?
On 14 November, members of the Advisory Boards from the EU-FINGERS, LETHE and Multi-MeMo projects will hold a consultation, discussing topics around multidomain interventions to reduce dementia risk and communication tools for discussing risk of dementia with patients.

On 15 November, members of the EWGPWD will be providing advice to the ADIS and EPND projects on matters related to consent and data-sharing in dementia research. The same topics will be addressed in Spanish with members of the ADIS Advisory Board on 16 November.

On 15 November, members of the eBRAIN-Health Advisory Boards will meet to test and provide their feedback on an app developed as part of the project and used for cognitive training and rehabilitation. They will also share their perspectives on the use of virtual reality tools in the context of brain health and dementia.

The event is funded by the Luxembourg National Research Fund (FNR) under the aegis of the EU Joint Programme – Neurodegenerative Disease Research (JPND), the European Union’s Horizon 2020 research and Innovation and the Innovative Medicines Initiative 2 Joint Undertaking (JU). The JU receives support from the European Union’s Horizon2020 research and innovation programme and the European Federation of Pharmaceutical Industries and Associations (EFPIA).

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A session entitled ““Precision prevention of Alzheimer´s disease and dementia: advancing multidomain interventions” was dedicated to the EU-FINGERS project. Miia Kivipelto (Karolinska Institutet, Sweden) project coordinator of EU-FINGERS moderated the session. First, Francesca Mangialasche (Karolinska Institutet, Sweden) gave an overview of the JPND-supported project, aiming at developing a novel methodology for precision prevention of Alzheimer´s disease and dementia, based on the successful experience of the multidomain, lifestyle-based Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER). Next, Mariagnese Barbera, (University of Eastern Finland, Finland) gave an update on MET-FINGER, which is the first trial combining a multimodal lifestyle intervention with a putative disease-modifying drug for cognitive decline prevention, named Metformin. Alara Abaci (Karolinska Institutet, Sweden) then presented the results of a study investigating the perspectives of memory clinic patients regarding research participation. Findings showed considerable variation in memory clinic patient perspectives regarding research participation, and identified facilitators and barriers for intervention trials. To close the session, Ana Diaz (Alzheimer Europe, Luxembourg) pointed out the importance of exploring and involving members of the public in brain health research and described the approach used to set up the EU-FINGERS Advisory Board as well as its impact on the project. Finally, Anna Rosenberg (Finnish Institute for Health and Welfare) and Petri Lampinen (Finnish EU-FINGERS Advisory Board member) shared both their views on the EU-FINGERS Advisory Board, which provides feedback and advice to the EU-FINGERS researchers about various topics and issues linked to the research activities conducted by the consortium.

In addition to the EU-FINGERS session, Miia Kivipelto was the first speaker of the second plenary of the conference on “Brain health and prevention”, discussing “Building the evidence base for multi-modal interventions through European and International collaborations”.  She said that risk reduction of cognitive impairment and dementia is possible and indeed is already happening. Brain health, she stressed, should be a priority for society.  With an increasing body of evidence from clinical trials to show that multidomain interventions targeting several risk factors are effective and feasible, the EU-FINGERS and World-Wide FINGERS networks are now working on further developing and adapting these interventions to different target populations and settings.

We were glad that several members of the EU-FINGERS Advisory Board were in attendance and were able to join on-site and online.

More information about EU-FINGERS’s work can be found in the recently supplement published with new Dementia in Europe magazine at 33rd Alzheimer Europe Conference here.

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After 1997 with its successful Conference “Alzheimer’s, the blind hunter”, it will be the second time that an Alzheimer Europe Conference is organised in Helsinki and the conference motto this year will be “New opportunities in dementia care, policy and research”.

We are pleased to hold an EU-FINGERS session on 16 October (17-18:15 local time): “Precision prevention of Alzheimer´s disease and dementia: advancing multidomain interventions”

Moderator:  Miia Kivipelto
– Francesca Mangialasche: EU-FINGERS project: establishing the next generation of trials for dementia in Alzheimer’s disease
– Mari Barbera: A new precision-prevention approach combining lifestyle changes and metformin repurposing for the prevention of cognitive decline: MET-FINGER trial protocol and update
– Alara Abaci: Perspectives of memory clinic patients on participation in (dementia prevention) research
– Ana Diaz: Involving members of the public in brain health research: the EU-FINGERS example

You can register and find more information about the conference here: https://www.alzheimer-europe.org/Conferences/2023-Helsinki

We look forward to seeing you in Helsinki!

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Francesca Mangialasche (Karolinska Institutet, Sweden) presented a quick-oral presentation entitled “EU-FINGERS project: multimodal precision prevention for dementia in Alzheimer’s disease”. The presentation provided an overview of the EU-FINGERS project including its aims, partners and main results. She also presented the EU-FINGERS Advisory Board and the outcomes of the consultations that took place from the beginning of the project. Finally, she ended by pointing out that the WW-FINGERS Network is now composed of more than 45 participating countries.

We were glad that several members of the EU-FINGERS Advisory Board were in attendance and were able to join online.

If you were unable to participate in the 32nd Alzheimer Europe Conference #32AEC in October last year, you can now access some of the on-demand content from the event, free of charge. Videos of plenary and parallel presentations, as well as quick oral presentations are now available online. You can view further details and videos on the Alzheimer Europe webpage. You can also watch the videos in a specially-created playlist, on Alzheimer Europe YouTube channel. Francesca’s video can be viewed here.

Mark the dates of the next Alzheimer Europe Conference (#33AEC) in your calendars; “New opportunities in dementia care, policy and research” is organised from 16 to 18 October 2023 in Helsinki, Finland, where we will organise an EU-FINGERS session. You can find more information on the conference on the Alzheimer Europe website.

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Over two days, several sessions dedicated to the different work packages were held to discuss progress, ongoing activities and next steps. The General Assembly Meeting was a great occasion to exchange ideas and discuss important areas of collaboration moving forward.

The EU-FINGERS project has made huge progress thanks to the great commitment of the project partners. We would like to thank Karolinska Institutet for hosting the event, the EU-FINGERS coordination team, speakers and all participants who made the EU-FINGERS General Assembly Meeting an enjoyable and engagement event with interesting presentations and meaningful discussions.

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Leading researchers from 30 JPND supported projects gathered for a one-day international scientific meeting to liaise, network and facilitate knowledge exchange and best practices in the field of neurodegenerative disease research. Presented project topics ranged from Alzheimer’s to Parkinson’s diseases to rarer diseases such as Huntington’s disease, Amyotrophic Lateral Sclerosis, Prion disease, Spinal Muscular Atrophy and Spinocerebellar Ataxia.

This event was an opportunity to showcase the EU-FINGERS project and its progress. Professor Miia Kivipelto, Scientific Coordinator of EU-FINGERS, presented an overview of the project, emphasising the contribution provided by the EU-FINGERS Advisory Board. In addition, Anna Rosenberg presented a poster on the project including its workplan, methods and key achievements.

 “The aim of this symposium is to facilitate knowledge sharing and communication between the different research groups and to disseminate up-to-date research achievements from all completed JPND supported projects to relevant stakeholders. Networking and knowledge exchange between JPco-fuND projects and other JPND-supported projects, as well as among other conference attendees is key and help to create an international powerful community of researchers involved in neurodegenerative research. Tackling this global challenge is clearly beyond the scope and resources of any one country.”, said Professor Philippe Amouyel, JPND Chair.

Photos and slides can be viewed on the JPND website: https://www.neurodegenerationresearch.eu/supported-projects/jpnd-symposium-2022/

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The call for abstracts is now open and covers a broad range of topics to promote a multi-disciplinary and multi-professional approach to dementia. Alzheimer Europe is calling for abstracts for oral and poster presentations on the following subjects:

• (Inter)National dementia strategies
• Arts and culture
• Brain health and dementia prevention
• Carer training and support
• COVID-19 and dementia
• Cross border dementia initiatives
• Dementia-friendly initiatives
• Gender, sex and sexuality in dementia
• Home care and support
• Intellectual disability and dementia
• Minority ethnic groups
• Needs and experiences of people with dementia
• Non-Alzheimer’s dementias
• Psychosocial interventions
• Residential care
• Technology
• Timely diagnosis
• Young onset dementia

The deadline for submissions is the 15^th of May.  Registrations are also open, with an Early Bird fee available until 15 July.

We are pleased that the EU-FINGERS project will have a virtual exhibitor’s space on the conference platform! We are looking forward to meet you!

Please click here for more information about the conference:  https://www.alzheimer-europe.org/Conferences/2022-Bucharest

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During the second day of the conference, Prof Miia Kivipelto gave a plenary lecture and discussed multimodal prevention studies and lifestyle changes during the pandemic. As the coordinator of the global World-Wide FINGERS network and the EU-FINGERS project, she noted that the pandemic has had significant effects on many modifiable risk factors for dementia and Alzheimer´s disease, and on ongoing randomised clinical trials for dementia risk reduction and prevention.

Ana Diaz presented a quick-oral presentation entitled “Facilitating the involvement of people with and at risk of Alzheimer’s dementia in prevention research: The EU-FINGERS example”. The presentation provided an overview of the EU-FINGERS Advisory Board, and the outcomes of the discussions that took place during the first nine months of board´s activities. We were glad that several members of the EU-FINGERS Advisory Board were in attendance during the three-day event.

The EU-FINGERS Consortium also had the opportunity to hold a virtual booth, in which Francesca Mangialasche, Myroslava Protsiv and Cindy Birck represented the consortium.

Mark the dates of the next Alzheimer Europe Conference (#33AEC) in your calendars. “Building bridges” will take place in Bucharest, Romania from 5 to 7 December 2022.

You can find more information on the conference on the Alzheimer Europe website: https://www.alzheimer-europe.org/

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