Journal
INTERNATIONAL JOURNAL OF SOCIAL RESEARCH METHODOLOGY
Volume 24, Issue 6, Pages 775-780Publisher
ROUTLEDGE JOURNALS, TAYLOR & FRANCIS LTD
DOI: 10.1080/13645579.2020.1810997
Keywords
Dementia; participatory action research; arts-based methods; aged care; social enterprise
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Funding
- University of Wollongong Global Challenges Keystone Funding
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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.
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.
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