On 19-20 March 2024, Alzheimer Europe (AE) was delighted to welcome representatives from 21 member organisations to our Public Affairs meeting, a forum which enables sharing of updates, experiences, challenges and good practices in policy developments and campaign activities at both a national and European level. The meeting started on 19 March with a warm welcome from Maria do Rosário Zincke dos Reis, Chairperson of Alzheimer Europe (Portugal) and a tour de table of introductions. This was followed by presentations from AE staff and many member organisations. Topics included:
• National Policy and Campaigning activities: Country representatives from Portugal, France, Ireland, Poland, Lithuania and Germany shared their updates and developments, which followed with fruitful discussions, sharing and questions from participants looking at how to integrate strategies that work into their own countries and how to apply lessons learned in other countries to own strategies.
• Expectations of the general public and experiences of people with dementia in research participation, views on data sharing and consent policies: Angela Bradshaw (AE Director for Research) shared the scope of the Gates Ventures II project to identify key barriers and facilitators in research with people with dementia, and asked for recommendations on how the researchers can engage the national organisations in research. This prompted a great discussion amongst the participants on various barriers and facilitators that they recognise in their countries. Continuing on this topic, Lukas Duffner (AE Project Officer) presented AE’s primary systematic literature review of studies assessing barriers and facilitators in research involving people with dementia that he worked on. He shared the three main themes that were identified, and this was followed by further discussion and idea sharing amongst the attendees on various issues affecting research participation and how to improve engagement.
The following day, Jean Georges (AE Executive Director) opened the meeting and presented the topics:
• National Policy and Campaign activities: Member organisations from Italy, Hungary, Finland, Belgium, Greece, Turkey and Iceland presented their national policy campaign activities which was followed by questions and idea sharing.
• 2024 Yearbook on Independent Living: Owen Miller (AE Policy Officer) introduced the topic and scope of the 2024 Yearbook on Independent Living and requested feedback from participants on the proposed questions. Many participants responded with their feedback and information on their country’s current situations, pointing out the need for more clear definition of terms and suggesting related topics to consider adding to the questions. This was followed by presentations from members organisations from Finland, Greece, Netherlands and the United Kingdom (England) on their country’s strategies and targets for independent living.
• European Parliament elections - update on AE activities: Owen Miller opened the afternoon session with an overview of AE’s election campaign and communication activities, followed by an overview of activities related to the Helsinki Manifesto. Chris Bintener (AE Project Communications Officer) continued with a presentation on the Public Call for Action campaign and communication activities. Kate Boor Ellis (AE Director for Communications and Policy) then discussed the campaign and communications activities around the Dementia Pledge 2024, advising the member organisations how to engage their MEPs and candidates. Owen then presented the AE plan for post-election activities leading up to the European Parliament Dementia Day on 12 December 2024.
• National Policy and campaigning activities: Representatives from member organisations in Slovenia, France, Bulgaria, Montenegro, Netherlands, United Kingdom (England), Ukraine, Italy and North Macedonia then presented their updates, which followed with questions and idea sharing amongst the participants.
Jean Georges closed the meeting with thanks for the great engagement and contributions of participants and then gave an update on the upcoming Annual General Meeting that will take place in June in Luxembourg.
