Exploring the Added Value of Inclusive Dementia Research Throughout (and Beyond) the Research Process

Abstract

The need for the ‘voice’ of people living with dementia to be present in research has been gaining prominence in recent years. This has been realised through the rise of ‘inclusive research’, seeking to redress unequal power dynamics that have long dominated research. However, the impact and merit of inclusive research have been questioned, with questions around what value the involvement of disabled people as co-researchers adds to the research process and impact. With reference to an inclusive photovoice project on dementia post-diagnosis experiences, we address these debates through exploring the arc of the research project in three phases. In Phase 1 project notes and reflective conversations between the research team are drawn on to examine how the lived experience of researchers living with dementia shaped the focus and the methods employed. In Phase 2 conversation analysis is used to examine the interactional delivery of the focus group, showing that the researchers living with dementia used a mix of facilitation techniques to encourage and support talk, drawing on their own expertise by experience as an interactional tool to encourage participants to talk. In Phase 3 thematic analysis of participant follow up interviews is employed to examine experiences of taking part in the research. Participants reported improved positive self-image, benefits from peer support, and increased motivation to engage in future activities because of participation. We argue that the value the researchers with dementia added was not just confined to the focus of the research, but was ‘baked into’ project design delivery, and impact upon participants living with dementia. We show that the ‘added value’ of inclusive research shaped the research methods and delivery to fit participants, supported increased participation and agency from participants during the research, and enabled participants to contest deficit framing(s) of dementia after leaving the research project.