About the PAB

How was the PAB created?

In March 2019, all members of an existing working group of people with dementia (the European Working Group of People with Dementia, EWGPWD) were invited to participate in the PAB. In addition, some of the members of the EWGPWD and some of their supporters/carers expressed a special interest in the topic and became members of the PAB on an individual basis. We refer to this smaller group as the “core PAB group”. In November 2019, a person with Mild Cognitive Impairment and his wife (from the Netherlands) and a small group of people with Mild Cognitive Impairment were also invited to join the PAB.

Alzheimer Europe is leading the work of the PAB in collaboration with KCL, Lygature and relevant projects partners leading the different areas of work in the project.

Why is the PAB important?

RADAR-AD is looking at existing technological devices which are widely used nowadays. This work can be key to understanding and measuring how people with Alzheimer’s disease (AD) function and how AD can impact on this. It is therefore important that the perspectives, expectations and concerns of people with AD, who could eventually be asked to use these devices, are considered from the very beginning of the project. They are “experts by experience” as they have themselves experienced these changes and many use and may have experienced challenges whilst using different devices or technologies.

The RADAR AD PAB was set up at the beginning of the project and will be involved throughout the life of the project. The input provided by the PAB will, for example, help researchers to better understand and make decisions about the areas of functioning which are more meaningful to people affected by AD and which should be prioritised, about how to ensure that technology is adequate or adapted to the needs of this diverse group, about any possible concerns about using the technology in this way etc.

Listening to the voices of the people affected by AD is therefore essential.