Creating Innovations Together: Co-designing technology with people living with dementia and their care partners Jacki Liddle, Peter Worthy, Dan Angus, Anthony Angwin, Andrew Back, Janet Wiles and the Florence Lived Experience Expert Reference Group @jacki_liddle

Why technology? Potential to improve performance and participation Part of the environment Access to assistive technology (that you can use) is a human rights issue Creating Innovations Together: Alzheimers NZ | Thursday 25th Oct, 2018 #AlzNZConference CRICOS code 00025B

Why isn’t technology meeting its promise? Technology is good at: Memory, Prompts Connection Personalisation BUT Poor uptake, high abandonment Limited human involvement, limited evaluation Creating Innovations Together: Alzheimers NZ | Thursday 25th Oct, 2018 #AlzNZConference CRICOS code 00025B

The Florence Project Aims to develop technology WITH people living with dementia and their care partners to support communication Design team involves technology people, health professionals, and lived experience experts. Uses a process of co-design Creating Innovations Together: Alzheimers NZ | Thursday 25th Oct, 2018 #AlzNZConference CRICOS code 00025B

What is co-design? How are people involved? Creating Innovations Together: Alzheimers NZ | Thursday 25th Oct, 2018 #AlzNZConference CRICOS code 00025B

Technology experiences – an investigation Interpretive Description exploration: What are your current experiences of communication? What are your experiences with technology? Tell us about things that work well, and things that do not If anything at all was possible, what would you want made? What do you think of these options? Creating Innovations Together: Alzheimers NZ | Thursday 25th Oct, 2018 #AlzNZConference CRICOS code 00025B

Who we spoke with 9 people living with dementia 7 men, 2 women Age range: 60-80+ 12 care partners of someone living with dementia 9 women, 3 men Age range 30-80+ Range of different types of dementia Creating Innovations Together: Alzheimers NZ | Thursday 25th Oct, 2018 #AlzNZConference CRICOS code 00025B

What can technology offer?: Happy, safe and connected Support existing and new roles, connections Enhance independence Means of using skills, working on new skills Making the day go better Creating Innovations Together: Alzheimers NZ | Thursday 25th Oct, 2018 #AlzNZConference CRICOS code 00025B

Technology for caregiving A distinct and different purpose Safety Organising and communicating routines, events, reminders Connecting with person and staff/family/friends Seeking and sharing knowledge Being able to contribute to care when not physically present #AlzNZConference

The trouble with tech: Usability She’s probably had about 15 mobile phones, but yeah, they’ve all been unsuccessful, in terms of her figuring them out. And a definite no to a smartphone. The trouble with tech: Usability Barriers Not knowing about or knowing how to find and use helpful technology Gatekeepers Mainstream technology: Hard to use “I am bad with technology” Instead consider this “bad design” Michelle, Care partner He seems to, technology-wise - I don’t know what he does, but he breaks things, not physically, but his computer is not working at the moment Creating Innovations Together: Alzheimers NZ | Thursday 25th Oct, 2018

The trouble with tech: Ethical decision making Trade-offs How does it work? Who gets to choose? Creating Innovations Together: Alzheimers NZ | Thursday 25th Oct, 2018 CRICOS code 00025B

My own innovations: Finding and using technology I’ve put LED sensor lights in, so that if she wakes up in the middle of the night, a bit of a path will light up. Solving problems Identifying new opportunities Sharing solutions with others I …would print out paper calendars and writing bits and pieces and I found it was a good idea but it just didn’t work….I bought a Windows phone which synchs with my Outlook calendar and I now use that all the time…But I find that, now, a much easier way of managing time. When he was getting stressed, I could start playing Spotify music…where just Frank Sinatra or something like that would start playing and he would just relax, you know, and sit back. Michelle, care partner Richard, care partner David, living with dementia Creating Innovations Together: Alzheimers NZ | Thursday 25th Oct, 2018

Technology wishlists Gordon, living with dementia Joyce, living with dementia Michelle, care partner

Some other findings Technology identity Universal design Creating Innovations Together: Alzheimers NZ | Thursday 25th Oct, 2018 #AlzNZConference CRICOS code 00025B

Next steps Making personalised technology Goals How should technology work? What should and shouldn’t it do? Exploring values, ethical considerations Creating Innovations Together: Alzheimers NZ | Thursday 25th Oct, 2018 #AlzNZConference CRICOS code 00025B

What else have we learned? Value of low-tech and no-tech options Choice is individual to a person and their networks The complexity of context Danger of “gatekeeping” Some people need to be convinced of their valuable contribution Creating Innovations Together: Alzheimers NZ | Thursday 25th Oct, 2018 #AlzNZConference CRICOS code 00025B

Barriers to co-design Institutional barriers Time and energy Understanding the process Need to allocate time and resources, be persistent and communicate successes! Creating Innovations Together: Alzheimers NZ | Thursday 25th Oct, 2018 #AlzNZConference CRICOS code 00025B

Join Lived Experience Experts Want to get involved? Join Lived Experience Experts Some studies can involve online participation Face to face participation in SE Queensland Creating Innovations Together: Alzheimers NZ | Thursday 25th Oct, 2018 #AlzNZConference CRICOS code 00025B

Thank you – Any questions? Dr Jacki Liddle Researcher and Occupational Therapist School of Information Technology and Electrical Engineering j.liddle@uq.edu.au https://www.facebook.com/jacki.liddle.7 @jacki_liddle https://www.itee.uq.edu.au/research/projects/florence