Co-research with people living with dementia for change

Abstract

Research about patients with dementia in the context of acute care has been traditionally designed and carried out by researchers with little or no involvement of people with dementia. Moving away from the traditional way of conducting research on people with dementia, this study involved people with dementia as experts of lived experiences to co-develop knowledge for change. The paper presents our shared experiences (a person with dementia and a researcher) gained from an action research, titled Co-creating Person-Centred Care in Acute Care. We highlight our successes and possibilities for making real impacts on hospital care for patients with dementia by using an appreciative inquiry approach. The project was informed by the core principles of appreciative inquiry. The research involved seven patients with dementia together with a team of 50 interdisciplinary staff to inquire and take actions for improving dementia care in a medical unit. This article draws attention to a range of ethical responsibilities and challenges, which go beyond the traditional principles in University Research Ethics. The strengths and challenges of conducting action research with people living with dementia are discussed. We conclude by offering our learnings and practical tips to encourage more collaboration between researchers and people with dementia in undertaking action research to make social change.