Public Involvement: the EURO‐FINGERS approach

Abstract

AbstractBackgroundThe JPND‐funded project EURO‐FINGERS (2019‐2023) is part of the World‐Wide FINGERS network of multidomain trials for dementia risk reduction and prevention. It aims to develop relevant and standardised tools and methods for future trials or multidomain interventions to reduce dementia risk.MethodSince its beginning, EURO‐FINGERS has involved people from the general public in the project by means of an Advisory Board (AB). The AB is composed of 14 people from seven different European countries, who 1) have participated in prevention trials, 2) have a diagnosis/label of Subjective Cognitive Decline, Mild Cognitive Impairment, or dementia, and/or 3) take care of someone with dementia.ResultThe AB has worked closely with the researchers in the consortium and provided input to the different tools and methods developed in the project. Due to the COVID pandemic, all this work has been online.ConclusionIn the session, we will describe the main principles, challenges and approach used to set up the AB and meaningfully involve people with an interest in/ affected by dementia in the project. Next, we will present some of the work developed with the AB, specifically on the important topic of communication in this complex field. This will include reflections on the terminology to discuss the topic of risk reduction and dementia prevention in different contexts, as well as the more specific topic of dementia risk communication in the context of the memory clinic. The latter is an example of one of the tools which the consortium is developing. To close the session, the project coordinator and a member of the AB will address the topic of impact and value of this type of work for researchers and for members of the public.