Partnering with people living with dementia and care partners in technology research and design: Reflections and recommendations.
Jacki Liddle, Peter Worthy, Dennis Frost and 2 others
PMID 36203322WHAT IT FOUND
A small research team reflected on partnering with people living with dementia to design technology.
They recommend agreeing on the value of lived experience, engaging partners from the start, asking rather than assuming how to work, and challenging rigid research and design cultures.
Key findings
01The team synthesised their reflections into four core recommendations for partnering: agreeing on the value of lived experience, starting partnership as early as possible, asking rather than assuming how to engage, and pushing back against traditional ways of working.
02Barriers to effective partnering included organisational risk management concerns, the 'in-between' status of living experience experts who are neither employees nor participants, and rigid research and technology cultures.
03Occupational therapists are positioned to support these partnerships because skills in facilitating participation and adapting to changing needs are foundational to the discipline, though they may need to challenge existing institutional expectations.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The reflection comes from a very small group (5 people) who were most interested in developing ways of working, excluding those with more peripheral involvement. All authors are based in Australia, which may limit the applicability of the findings to other healthcare or research systems. The paper does not formally investigate how team experiences changed over time, relying instead on retrospective reflection. The strategies described are specific to technology co-design with people living with dementia and may not transfer directly to other clinical or research contexts.
Declared interests
One co-author (Jacki Liddle) is a member of the Australian Occupational Therapy Journal Editorial Board. The work was funded by the Australian Research Council.
The easy way to misread this
Do not interpret this as evidence that partnering with people with dementia improves clinical outcomes or technology efficacy. This is a reflection on the process of research collaboration, not a study of patient results. The recommendations are based on the experiences of five individuals and may not apply to every team or institutional setting.