The 2023 Alzheimer’s Association International Conference (AAIC) took place from 16th-20th July as a hybrid event (online and in Amsterdam, Netherlands). It is the world’s largest meeting dedicated to advancing dementia science. This year, the conference attracted over 11,000 attendees including researchers, clinicians and dementia professionals to share breaking research discoveries that will lead to methods of prevention and treatment and improvements in diagnosis for Alzheimer’s disease.
A key session of the event was dedicated to Patient and Public Involvement (PPI) in dementia research. We were glad that 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. The EU-FINGERS Advisory Board is a successful example of involvement of several people willing to share their views, consisting of 14 members with an interest in/ affected by dementia from 7 European countries. They provide feedback and advice to the EU-FINGERS researchers about various topics and issues linked to the research activities conducted by the consortium.
“In the Alzheimer and dementia field, prevention is a relatively new area. When planning EU-FINGERS, we felt that this research would benefit from input of people in the at-risk spectrum.”, said Anna Rosenberg.
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 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.
Mark the dates of the next Alzheimer’s Association International Conference (#AAIC24) in your calendars: 28th July to 1st August 2024 in Philadelphia (US) and online.