Thinking through participatory action research with people with late-stage dementia: research note on mistakes, creative methods and partnerships

ABSTRACT

The perspective of people with dementia, particularly late-stage dementia, is often excluded from research, even from methods like Participatory Action Research (PAR), which aim to democratise research. This research note outlines how a PAR project engaged with the perspective of people with late-stage dementia in a residential aged care facility. Firstly, we focus on our mistakes: methods which did not appropriately include or engage this group. Secondly, we explore how methods drawn from design thinking, creative and arts-based research were used to encourage staff and families to think about the perspective of people with dementia. Finally, we explain how only after this extensive creative consultation and through a partnership with a social enterprise was the PAR project able to engage people with late-stage dementia in meaningful ways.

KEYWORDS:

• Dementia
• participatory action research
• arts-based methods
• aged care
• social enterprise

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

University of Wollongong Global Challenges Keystone Funding

Notes on contributors

Louisa Smith

Louisa’s research interests centre on the relationship between experiences of disability across the life course, complexity, social policy and social change. Her research works across the disciplines of sociology, disability studies and policy studies. She approaches all research and teaching as means of fostering social inclusion and belonging, through co-production, arts-based methods and knowledge translation at all stages of the process.

Lyn Phillipson

Lyn Phillipson is a public health academic who engages in research and action to promote aged and dementia-friendly communities. She is known for her community engaged approach to undertaking research with impact. She uses qualitative and participatory methods to work with older people to promote understanding and change in the social, physical and service environments that contribute to their wellbeing. She has particular expertise in working with people with dementia and their care partners.