On 14 and 15 June, the European Working Group of People with Dementia (EWGPWD) and their supporters met in Brussels. This was the second face-to-face meeting since the beginning of the pandemic. The meeting started with a farewell to two members of the previous working group (Carol Hargreaves and Nina Baláčková) and a member of the current working group (Geert Van Laer). Chris Roberts (Chair of the EWGPWD) and Iva Holmerová (Chair of Alzheimer Europe) thanked them for their very valuable contributions to the EWGPWD and Alzheimer Europe’s work. They were presented with their awards by Iva Holmerová. The first session focused on gathering input on a set of guidelines on perceptions and the portrayal of dementia and people with dementia that were developed in 2013 by Alzheimer Europe’s ethics working group. The discussions were facilitated by Dianne Gove (Director for Projects), Ana Diaz (Project Officer), Soraya Moradi-Bachiller (Project Officer) and Daphné Lamirel (Project Officer). All members and supporters provided a range of valuable ideas, perspectives and comments to help revise the guidelines.
The second day of the EWGPWD meeting revolved around the RADAR-AD project. Members of the EWGPWD are part of the RADAR-AD Patient Advisory Board (PAB). Larry Gardiner and his wife, Ildikó Pósta, who are also members of the PAB joined the discussions. Four researchers from RADAR-AD delivered a series of presentations on different aspects of the research project, including a recap of the project, work on functional domains, plans for the analysis of the data, and ethical and regulatory issues. Each presentation was followed by lively interaction with the members of the RADAR-AD PAB, who provided feedback and raised questions about the various points that had been presented. Finally, Chris Roberts (Chair of the EWGPWD) moderated a discussion about the EWGPWD special symposium, which will be held in Bucharest during the annual conference. There was plenty of enthusiasm from the members of the EWGPWD and those present discussed what they would like to present. Alzheimer Europe and the EWGPWD would like to thank Nina, Carol and Geert for their great work, enthusiasm and dedication. They will be sadly missed but always remembered. We wish them all the best and hope to keep in touch!
