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

Authors

Louisa Smith, University of Wollongong
Lyn Phillipson, University of Wollongong

Publication Name

International Journal of Social Research Methodology

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.

Open Access Status

This publication is not available as open access

Volume

24

Issue

6

First Page

775

Last Page

780