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

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.

Automated summary

This research note highlights the exclusion of late-stage dementia patients' perspectives in research, despite efforts like Participatory Action Research. It outlines the shortcomings in engaging this group in a PAR project at a residential aged care facility, but also demonstrates how methods from design thinking, creative, and arts-based research successfully facilitated meaningful interactions with late-stage dementia patients.