As part of the REBALANCE project, the consortium has developed a new set of accessible informative materials designed for people living with dementia, their supporters, and wider audiences interested in understanding how neurodegenerative research is conducted, what ethical considerations it involves, and how emerging technologies are being explored. The materials were developed through a collaborative and iterative process, made possible by the active participation and support of Alzheimer Europe, as well as people living with dementia and their supporters. Sarah Campill (Alzheimer Europe) shared valuable insights and best practices on public involvement across Europe, helping to ground the materials in existing experience and standards. Chris Roberts, a former member of the European Working Group of People with Dementia (EWGPWD), and his partner and supporter Jayne Goodrick (Wales, UK) contributed their lived experiences of collaboration with researchers, ensuring that the materials address real concerns and expectations. Without these contributions, this work would not have been possible. Particular attention was paid to clarity and transparency.
Ethical aspects of preclinical research
The first set of materials focuses on research ethics, with particular attention to animal research in the field of neurodegenerative diseases. It explains why ethical considerations are central to scientific work, how animal welfare is protected, and what rules and oversight mechanisms researchers must follow. The materials also address common questions about why animals are still used in some areas of brain research, while highlighting ongoing efforts to develop and use alternative methods wherever possible.
Preclinical and translational research
The second set focuses on preclinical and translational research as the early stages of developing new treatments. It explains how laboratory studies, animal models, and other methods help researchers understand disease mechanisms and assess safety before treatments can be tested in humans. Importantly, the materials also highlight the role that people with lived experience of neurodegenerative diseases and their caregivers can play in shaping research priorities: identifying unmet needs and supporting more relevant and responsible research.
Focused ultrasound (FUS)
The third set of materials introduces focused ultrasound (FUS) – an innovative, non-invasive technology that is already used in some areas of medicine and is currently being explored for neurodegenerative diseases. The materials explain how FUS works, what stage the research is at, and why it is considered a promising but still early-stage approach for Alzheimer’s disease and other neurodegenerative diseases. They also address safety considerations and the need for further research before wider clinical research and use. All informative materials are freely available online and can be accessed via the REBALANCE website under the “Additional materials” section: https://uefconnect.uef.fi/en/rebalance/
By making these materials openly available, the REBALANCE project aims to support informed dialogue, realistic expectations, and more inclusive engagement with early-stage research among people living with dementia and their supporters. 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 is being carried out between 01.04.2023 – 31.12.2026.