The 2023 Alzheimer’s Association International Conference (AAIC) took place from 16th-20th July as a hybrid event (online and in Amsterdam, Netherlands). A key session of the event was dedicated to Patient and Public Involvement (PPI) in dementia research. Several members of the EU-FINGERS team were in attendance to present the EU-FINGERS approach. First, Anna Rosenberg (Finnish Institute for Health and Welfare) and Cindy Birck (Alzheimer Europe) described the main principles, challenges and approach used to set up the Advisory Board, led by Alzheimer Europe. “For the very first time, we set up a group composed of people at different stages across the AD continuum. The EU-FINGERS Advisory Board is a successful example of involvement of several people willing to share their views, consisting of 14 members from 7 EU countries. We built an environment where people feel safe and confident to share opinions.”, said Cindy Birck Next, Heleen M.A. Hendriksen (Alzheimer Center Amsterdam) presented some of the work developed with the Advisory Board, specifically on the important topic of communication in this complex field.
This includes reflections on the terminology to discuss the topic of risk reduction and dementia prevention in different contexts, as well as the more specific topic of dementia risk communication in the context of the memory clinic. The latter is an example of one of the tools which the consortium is developing. To close the talk, Nick Montague (Luxembourg) shared his experience as a member of the EU-FINGERS Advisory Board. He mentioned his diagnosis and his daily routine. He also addressed the value of the Advisory Board and this type of work. “For me this is a very trusted and safe environment where I can say honestly, what I think. I find that being part of this group discussing various parts of dementia is very worthwhile challenging and hopefully helpful to the researchers.”, said Nick Montague. The EU-FINGERS project is supported by the Luxembourg National Research Fund (INTER/JPND/19/14012609) under the aegis of the EU Joint Programme - Neurodegenerative Disease Research (JPND).
