Alison De Kruiff & Bridgette Engeler - Design Research with Dementia in Mind

With approximately 472,000 Australians living with dementia and 1.6 million people are involved in their care in 2021, it’s not surprising that it’s perceived – and even feared - as ‘part of getting older’ but also not very well-understood. Many people living with dementia wish to continue living at home, so research is needed to find out how best to support them. This presentation discusses the practicalities of conducting design research with people living with dementia in the context of an 18-month in-home study. We’ll share some of the challenges, successes and insights showing how design researchers can make a positive impact on the lives of participants.

Transcript

1. Acknowledgement of Country
2. Design Research with Dementia in Mind Ali de Kruiff and Bridgette Engeler DR2022 Thursday 17 March
3. Dementia affects millions of people 472,000 Australians are living with dementia 1.6 million people involved in care 70% in the community People want to stay in their home for longer (Dementia Australia, n.d.)
4. Our research project Partnered with Dementia Australia (Victoria) Duration: 18 months 28 participants (13 men, 15 women) 24 support people 12 researchers (Tandori, Beh & Pedell, 2019)
5. Why can't we take the same approach as with other research participants? Doing research with people living with dementia is complicated No ‘one size fits all’ Even the brief had to be adjusted (Prince et al., 2015; Sachdev et al., 2014)
6. Ethics, ethics, ethics (National Statement on Ethical Conduct in Human Research 2007, 2018)
7. Challenge myths and assumptions about people living with dementia
8. Key findings
9. Lessons learned
10. Tips for future research
11. Reference List Welcome to Dementia Australia. Home | Dementia Australia. (n.d.). Retrieved March 14, 2022, from https://www.dementia.org.au/ Tandori, E., Beh, J., & Pedell, S. (2019, December). It's on the Cards: Designing Technology Instructions for People Living with Dementia. In Proceedings of the 31st Australian Conference on Human-Computer-Interaction (pp. 402-406).
12. Reference List National Statement on Ethical Conduct in Human Research 2007 (Updated 2018). The National Health and Medical Research Council, the Australian Research Council and Universities Australia. Commonwealth of Australia, Canberra.
13. Reference List Prince, M., Wimo, A., Guerchet, M., Gemma-Claire, A., Wu, Y.-T., & Prina, M., 2015. World Alzheimer Report 2015: The Global Impact of Dementia - An analysis of prevalence, incidence, cost and trends. Alzheimer’s Disease International, 84. https://doi.org/10.1111/j.0963-7214.2004.0029 3 Sachdev, P. S., Blacker, D., Blazer, D. G., Ganguli, M, Jeste, D. V., Paulsen, J. S., Petersen, R. C., 2014. Classifying neurocognitive disorders: the DSM-5 approach. Neurology, Nature Reviews, vol.10, pp.634-642.