In July, Sarah Campill (Public Involvement Officer, Alzheimer Europe) travelled with Jan Runar Eliassen (member of the European Working Group of People with Dementia, from Norway) and his wife Marion Tur Eliassen to Toronto (Canada) to speak at and participate in the Alzheimer’s Association International Conference 2025 (AAIC25). The event brought together nearly 19,000 attendees from around the world, with over 6,400 scientific submissions, highlighting the latest advances in dementia research and care. Jean Georges (Executive Director, Alzheimer Europe) also attended the conference.
26 July: Spotlight on lived experience at AAIC pre-conference immersive session
On 26 July, Jan Runar, Marion and Sarah co-presented during the immersive pre-conference session, “Building Capacity for Collaborations Among Researchers and People with Lived Experience of Dementia: Global Perspectives.” The trio shared Alzheimer Europe’s approach to involving people with dementia and carers in its activities and European research projects, offering insights from their respective perspectives. The session was co-organised by the Canadian Consortium on Neurodegeneration in Aging (CCNA), the Engagement of People with Lived Experience of Dementia (EPLED) and Knowledge Mobilization (KM) programmes, the International Society to Advance Alzheimer’s Research and Treatment (ISTAART) through its Partnering with Research Participants Professional Interest Area (PIA), and the Global Brain Health Institute (GBHI). Each organisation shared its approach to involving people with lived experience in dementia research, illustrating the diversity of methods, interpretations of terminology and levels of involvement used across different regions and contexts. While the terminology and practices varied, the session highlighted a shared commitment to inclusive research, the importance of listening to diverse perspectives and that there is a lot to learn from one another. The messages shared by speakers with lived experience resonated deeply, not only with the audience but also among fellow presenters, reinforcing a collective sense of purpose and solidarity in advancing meaningful involvement in dementia research. “Take the time to create a safe and respectful environment where people with dementia feel valued and heard. Use simple, clear language, be patient and adapt interactions to their needs and pace. Actively listen to their perspectives and acknowledge their contributions as equal partners in the research. This fosters meaningful participation and ensures their voices are authentically represented”, said Marion, addressing young researchers “Being part of AE’s work provides us with a lot of information and knowledge, which is very valuable and meaningful. It feels good to connect with others living with the same disease and to have the opportunity to learn from and support each other. With a disease for which there is still no cure, it is especially meaningful to contribute to research to ensure that those who come after us are met in a better way and one day can receive a cure for this disease”, Jan Runar said in his closing statement.
27–28 July: Poster presentations on Public Involvement and participation pathways
On 27 July, Sarah presented a poster on behalf of Lukas Duffner (Project Officer, Alzheimer Europe) titled “Pathways to Participation: Understanding Barriers and Enablers to Participation in Dementia Research,” which focused on recent findings from a publication exploring inclusive research practices. On 28 July, Sarah presented her poster on “Informed Choices and Early Dementia Risk Disclosure in Home-Based Assessments in the PREDICTOM Study: A Public Involvement Approach,” highlighting our recent work on Public Involvement in the IHI PREDICTOM project.
29 July: ISTAART Skills Workshop
On 29 July, Jan Runar, Marion and Sarah contributed to the ISTAART Skills Workshop, “Collaborating with People with Lived Experience in Dementia Research.” The session, designed for early career researchers, facilitated small group discussions with people with dementia and care partners. Participants explored enablers and barriers to research participation and shared promising practices for inclusive research. The moment was documented by Michelle Memran (Documentary Filmmaker and Atlantic Fellow for Equity in Brain Health, GBHI), who expertly captured the special atmosphere in the room. A Participant summarised the event later: “Ask the Experts wasn’t just the name; it was the message. People with lived experience are the experts.” Both sessions and the posters were well received and sparked meaningful conversations around inclusive research practices. The conference also provided valuable opportunities to strengthen international collaborations and explore emerging trends in dementia research.