A Seat Around the Table: Participatory Data Analysis With People Living With Dementia

Abstract

The involvement of “people with experience” in research has developed considerably in the last decade. However, involvement as co-analysts at the point of data analysis and synthesis has received very little attention—in particular, there is very little work that involves people living with dementia as co-analysts. In this qualitative secondary data analysis project, we (a) analyzed data through two theoretical lenses: Douglas’s cultural theory of risk and Tronto’s Ethic of Care, and (b) analyzed data in workshops with people living with dementia. The design involved cycles of presenting, interpreting, representing and reinterpreting the data, and findings between multiple stakeholders. We explore ways of involving people with experience as co-analysts and explore the role of reflexivity, multiple voicing, literary styling, and performance in participatory data analysis.