Table 4 Learning point 3 – using existing groups

Attaching the workshop to an existing group meeting facilitated set up and meant that those attending were happy to talk as they already knew each other. It did limit the control a researcher had in terms of time devoted to discussing research concerns or in setting up activities. Nevertheless, it is important to consider whether meeting in a venue arranged by researchers may mean that the needs of the team overshadow those whose views are seldom listened to, if individuals feel more comfortable talking in a familiar setting at a familiar time. This may have been the case especially for those with young onset dementia. This highlights the issue of power relations in PPI. There is sometimes an expectation that PPI contributors will ‘come to researchers’, whereby we ask individuals to fit with the setting, communication, approaches with which we, as researchers, are familiar. This is likely to exclude certain people. Democratising and distributing spaces in which we interact as part of PPI is, therefore, important. This may be encountered as inconvenient to researchers’ norms. However, overall, it can be productive and positive, enabling new and diverse groups to participate.