The last meeting of the EWGPWD in 2019 was held in Brussels from 10-12 December. Prior to the meeting, members of the group and their supporters attended the AE Lunch Debate on the topic of improving the diagnosis of dementia. On the first day of the meeting, members provided feedback about their involvement at the AE conference and various other events where some members of the group had participated on behalf of the EWGPWD. Different researchers from European projects (MinD, SPAN+, RADAR-AD, PARADIGM) actively participated in the meeting. From the MinD project, two of the researchers presented the outcomes of this project which had focused on the topic of design and mindfulness in dementia and the group was invited to provide feedback on the ‘reflective booklet with mindful exercises: Living the Life’. On the second day of the meeting, the group worked on the topic of empowerment and initiatives that can promote the empowerment of people affected by dementia. The session was co-moderated by three researchers from the SPAN+ project (Radboud umc) and AE staff. This was followed by a consultation about the RADAR-AD project on the topics of recruitment and retention in the trial that will begin in early 2020. Members of the EWGPWD and their supporters, as members of the RADAR-AD Patient Advisory Board, provided input on these topics. The consultation was co-moderated by AE staff and researchers from the VUmc, King’s College and Lygature. After the meeting, a few PAB members also tested one of the apps which will be used for the study. During the last session of the day, the group discussed the value and impact of patient involvement, and created “trees of impact” which reflected what they hoped to get in return for their contributions to research. This session was led by researchers from the PARADIGM project from VU-Athena and AE staff. During the last day of the meeting, the group worked on the topics of ethical issues related to dementia research and dementia-friendly communities. They also contributed to work on language use in relation to changes in behaviour associated with dementia (which is being led by the University of Hull). During the meeting, the group and Alzheimer Europe staff bid a fond farewell to Miha Kastelic from the Czech Republic who had been a member of the group since 2018. The members of the EWGPWD as well as everyone at Alzheimer Europe thank Miha for his contributions during his time with the group and also thank his wife Alena for her support and involvement.
