Participatory action research: An exploration from a Freirean perspective of research involving people with dementia

Abstract

Background: Researchers are increasingly being called upon to involve people with dementia in research that pertains to them. Participatory Action Research (PAR) has been one of the approaches that has been utilized to do this. How people understand and apply the ideas behind this approach however has often been atheoretical and diverse. This has implications for how purpose, power, voice and agency are conceived and actualized. Objectives: This paper will examine how theoretical construction of PAR can inform the process of meaningfully involving people living with dementia in research. Specifically, drawing on the work of Paulo Freire, this paper will articulate a way of conceptualizing PAR that is explicitly critical and then demonstrate how these ideas informed a PAR study focused on addressing stigma and discrimination with people living with dementia. Conclusion: The purpose of the paper is to engage researchers and people with lived expertise in critical reflection of what it actually means to involve people with dementia in research.