Action based on knowledge – Reflections on Day 2 IDC 2015

The International Dementia Conference 2015 is over and I had a night to sleep over it.

The most interesting session for me has been the one about ‘Technology’ which got me in touch with two researchers working on the same topic as me – Home alterations made by people living with dementia – but come from completely different directions. I hope to stay in touch and exchange ideas and methods to further my work.

The concluding panel discussion really surprised me in its openness and directness and I want to reflect on two points that have been mentioned and add two more observations. One was the notion that existing practices need to be questioned. As Chair June Andrews called it: Not destructive, but disruptive. And I think this is an area in which academic researchers could make a difference. Coming from outside, they will question practices nearly automatically when trying to make sense. But they may also have capacities to try out things and explore new ideas, which is always hard to do in an already existing system, because of existing power structures as well as time issues.

Which links to the other notion from the panel discussion I want to pick up. A call for action – and for activism has been issued. The International Dementia Conference has been part of the ‘Festival of Ideas’ and it has been mentioned that we next might need a ‘Festival of Actions’. I see a link there with the idea of disruptive questions and again think that academic researchers and designers should respond to this call. I think we need further exploration what living with dementia means and a more empathic response to the needs that may come up. Disruptive design ideas that challenge persceptions could be a way to enable this discussion and involve people not formerly interested.

One of my observations has been that even though the call to get firsthand experiences, to get a better understanding of what living with dementia is like, little has been done in this regards. Knowledge transfer came mostly from people working in dementia care or little from close partners. Even though many words disempowering people with dementia have been thrown out, there is still a prevailing culture of helplessness in naming people with dementia ‘patients’ and those close to them ‘caregivers’.  It his is one topic our team picked up during the Create4Dementia Hackathon and I still think this needs further observation. One of the thesis I want to test is whether people with dementia initiate alterations and if this more active view can be conveyed to others.

I want to further highlight the observation from the first day, that there is still a strong disconnect between academic researchers, designer or generally commercial interests and people involved in care. Which seems to be even further disconnected from the experience of people living with dementia, which seems to be taken little into account. New ways of engagement need to be found, both with people living with dementia, but also within the other groups.

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