Co-researching with people living with dementia: A co-operative inquiry

Abstract

There is a growing body of research that involves people in research beyond that of being participants, particularly in areas such as mental health and cancer research. Most research in the dementia care sphere involves people living with dementia as participants but fails to involve them in the research process beyond that. The involvement of people living with dementia as partners in the research process or as co-researchers is an emerging field in dementia research but is still limited in application. To date, there are no research studies that seek to explore the facilitation of co-research with people living with dementia. This thesis utilised the broad methodology of co-operative inquiry to explore the initiating, establishing and facilitating of an inquiry group with people living with dementia. The inquiry group had its foundation in the concept of research with people rather than on them and aimed to develop an action-based output based on a topic that had meaning to the group. The inquiry group was made up of six individuals including two people living with a diagnosis of dementia, three care partners and a facilitator. The inquiry group worked collaboratively through phases of action and reflection over 12 meetings. This thesis explored the week-by-week meetings of the inquiry group and how this was facilitated. An action output of an animation was produced which was narrated by members of the inquiry group and was based on their own experiences of living with dementia and the stigma that they encountered. Three broad themes were identified by the inquiry group: Positive Experiences, Negative Experiences and a Core Message (Education). These themes were adopted into a script which involved the narration of the lived experiences of the members of the inquiry group. Based on the observations of the facilitator and an external partner, a new and dynamic model of group facilitation was presented to support the facilitation of co-researching with people living with dementia. This study contributes to the emerging sphere of co-research with people living with dementia by exploring the facilitation of such research and presenting a new model that looks to address the gaps in current group facilitation theory by specifically considering people living with dementia. This model places emphasis on working collaboratively but also acknowledges when to step back and step away from the research process.

Date of Award	1 Aug 2020
Original language	English
Awarding Institution	The University of Manchester
Supervisor	Caroline Swarbrick (Supervisor), John Keady (Supervisor) & Penny Bee (Supervisor)