Next week in Luxembourg, at the first event of its kind, six European research projects will join together in a series of consultations focusing on Public Involvement in dementia and brain health research, organised by Alzheimer Europe.
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).