Involving people living with dementia in systematic reviews

In health and social care, the involvement of people who use services is an essential part of making sure the services are relevant and useful. Yet there is little evidence that people with a diagnosis of dementia have been involved in helping to shape policy and practice.This project reports a small step along this road. There are now over 200 studies of the views of people with dementia and we need to examine the messages from this work. At the same time, it is vital to involve people with dementia in the review. With funding from the Averil Osborn Memorial Fund, we undertook the pilot stage of a systematic review of the views of people with dementia, and tested ways of involving people with dementia as partners in the research. Our findings were that people enjoyed participating in the group. All members of the group voiced opinions and experiences and there were high levels of positive mood and engagement. Participants welcomed being asked their opinions and often had strong views about how they wanted other people to treat them. Group members were respectful and supportive towards each other even when they did not share the same point of view. The group demonstrated that people with dementia could offer clear opinions with direct relevance to the conduct of a systematic review. Participants had strong views about what should be included, what counts as quality and whether the key themes made sense. In preparing for a full systematic review, their views provide a key starting point that would not have been possible without the contribution of people living with dementia.