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
   

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2. Design Research with
   Dementia in Mind
   Ali de Kruiff and Bridgette Engeler
   DR2022
   Thursday 17 March
   

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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.)
   

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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)
   

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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)
   

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6. Ethics, ethics, ethics
   (National Statement on Ethical Conduct in Human Research 2007, 2018)
   

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7. Challenge myths and
   assumptions about people
   living with dementia
   

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8. Key findings
   

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9. Lessons learned
   

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10. Tips for future
    research
    

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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).
    

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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.
    

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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.
    

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