On 29 November, the members of the European Working Group of People with Dementia (EWGPWD), and some of their supporters, gathered in their first online consultation in the context of Public Involvement activities for the EPND (European Platform for Neurodegenerative Diseases) project. The consultation was facilitated by Daphné Lamirel (Project Officer), Ana Diaz (Project Officer) and Dianne Gove (Director for Projects).
Members of the EWGPWD, who constitute the EPND Patient Expert Group and provide their opinions on various topics of the EPND project, were asked to provide their perspectives on ethical and respectful communication towards people with dementia. The meetings were lively with all the members actively participating and providing valuable feedback. The ideas gathered during the consultation will inform the development of guidelines for researchers to communicate respectfully about and to people with neurodegenerative diseases in a European context.
The next steps in this work include subsequent consultations with the EWGPWD on the topic of communication. The group will discuss clear communication and Alzheimer’s terminology, reciprocity, barriers and facilitators when engaging people with dementia, and feedback on the glossary of terms used in the EPND project. A parallel group composed of Spanish-speaking people with Parkinson’s disease from Parkinson Federacion Espanola is participating in consultations on similar topics, which are also feeding into the development of the guidelines.
More information about each member of the 2022-2024 EWGPWD (EPND Patient Expert Group) can be found here: https://www.alzheimer-europe.org/about-us/european-working-group-people-dementia/members