Meeting with EWGPWD and EDCWG
In December 2024, the DCs had the opportunity to meet the European Working Group of People with Dementia (EWGPWD) and the European Dementia Carers Working Group (EDCWG) in October 2024, where they engaged in discussions on how to ensure their research methodologies are relevant and impactful for people living with dementia and their caregivers.
Some key insights emerged: Marine Markaryan, Ajda Flisar, and Sunny Tan found that their respective research topics— maintaining couplehood, nighttime agitation, social needs,—were highly relevant, as confirmed by both working groups.
Another recurring theme was the importance of flexibility in research methods. DCs who tested interview questions and interactive tools—such as visuals (Marine), scents (Natsumi Wada), and artifacts (Alicia Valencia)—received valuable input on how to make their approaches more engaging and reflective of lived experiences.
Additionally, discussions reinforced the value of co-creation and public involvement in dementia research. Andrea Nakakawa and Rising Lai, for instance, highlighted how direct feedback helped refine their research on home care services and mealtime experiences, ensuring they remain practical and meaningful for participants.
Here are the impressions the chairs of the groups shared after the event:
“I found them [the DCs] to be very invested in the lived experience and I mean from the carers point of view as well as the people who have dementia, I felt that they have an eagerness to learn as much as possible about the lives of those affected by dementia and when I see that happening I am always delighted to work with such passionate researchers.
To live at home is the aim of everyone who has got a diagnosis and their carer as long as possible and they can clearly see that, they also have shown that they understand that the relationship dynamic can change in the family, with this in mind it can only be beneficial to research projects in the future and they also have a clear understanding that home is not necessarily the place where a person lives but where a person is most content and happy”. Kevin Quaid, Chair of the European Working Group of People with Dementia
“I found the PhD candidates were well prepared but more importantly were enthusiastic about the topics they brought to the table to discuss with us. They made the conversations interactive and relevant, allowing everyone to contribute
By ensuring their projects were grounded in practical needs and experiences, they empowered us to help refine their agendas. Hopefully this will ensure that their research is relevant and impactful, and will lead to real-world benefits”. Trevor Salomon, Chair of the European Dementia Carers Working Group
Rising used dementia-friendly visual cards during the meeting.
Moving forward, DCs will integrate these insights into their research. The HOMEDEM network remains committed to PPI research, ensuring that findings translate into meaningful, person-centered outcomes.
