At a hybrid-format workshop held in Riga (Latvia) on 25 February 2025, researchers, representatives from Alzheimer Europe, and people with lived experience came together to share insights and challenges around Public Involvement in preclinical and translational research. The event featured presentations, open discussions, and a co-creative session focused on developing informative materials about preclinical and translational research for people with dementia and their supporters. Prof. Signe Mežinska and Anna Žabicka from the University of Latvia, a REBALANCE consortium partner leading this phase of the project, presented initial findings from focus groups conducted with researchers, people living with dementia, and caregivers. Researchers in focus groups highlighted that engagement with people affected by the disease can bring motivation, clarify research goals, and improve the relevance of studies. At the same time, many acknowledged feeling underprepared to involve the public meaningfully, stressing the need for training and resources.
At the same time, people with dementia and their carers involved in focus groups voiced strong support for early involvement in the research process. They emphasised the importance of every-day knowledge gained through lived experience, which, ac-cording to them, is a valuable yet often overlooked perspective in early research. A common concern raised by both groups was the balance between hope and hype: while hope is vital, participants stressed the need for transparency and realistic communication about the outcomes and limitations of ongoing research. The workshop also featured a presentation by Prof. Tarja Malm (University of Eastern Finland), REBALANCE consortium coordinator, who provided an overview of the project’s aims and progress. Sarah Campill (Public Involvement Officer, Alzheimer Europe) shared valuable insights and best practices on Public Involvement across Europe. Chris Roberts, a member of the European Working Group of People with Dementia (EWGPWD), and his wife and supporter Jayne Goodrick (Wales, UK) shared their experiences of collaboration with researchers. In the afternoon, participants turned their attention to the practical development of informational materials.
Contributions from Sarah Campill, Chris Roberts, Jayne Goodrick, and Baiba Ziemele, a Latvian advocate for patients' rights, were particularly valuable in shaping these materials to be clear, relevant, and respectful of the needs of people with dementia and their families. The second half of the day was dedicated to discussing the practical needs for developing informative materials on pre-clinical and translational research. The insights of Sarah Campill, Chris Roberts, Jayne Goodrick, and Baiba Ziemele again gave irreplaceable contributions to this work. The feed-back gathered at the workshop will inform the next steps of the REBALANCE project, including the refinement of materials to better support people with dementia and their supporters.
You can find more information about the REBALANCE project here: https://uefconnect.uef.fi/en/group/rebalance/
The REBALANCE project is funded under the 2022 JPND Call for “Understanding the Mechanisms for Non-Pharmacological Interventions”. The project is supported through the following national funding organizations: Academy of Finland, Finland; Brain Canada Foundation; Luxembourg National Research Fund; The Netherlands Organization for Health Research; French National Research Agency and the Latvian Council of Science. The project will be carried out during 1 April 2023-31 December 2026.