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Nursing Blog

Nursing Blog

Stories about Nursing at Edinburgh straight from our staff and students

My Canadian Adventure Part One: International Consortium for Dementia and Wayfinding

About a year ago, when I was just getting my head around using Twitter (any followers who have been with me from the beginning will remember that I didn’t like the platform at first), I was contacted by Ron Balerno (@rb33) who saw my research profile and shared his experiences of caring for his father who had dementia. Ron linked me up with a University of Alberta PhD student, Noellanah Neubauer and we arranged a conference call (little did we know, that was the beginning of something special)!

Noellanah and I are researching similar topics and she shared my frustrations that there are pockets of research around the world about people with dementia who get lost or go ‘missing’ but that there seemed to be no platform for knowledge exchange.  We investigated and found that the International Consortium for Dementia Related Wandering used to exist but that terminology had aged out, funding was lost and key players in the field had retired. Noellanah made the most of several conference visits to network and get approval to ‘rebirth’ the network under new leadership and a new name. Fast forward a few months, Noellanah and her supervisor obtained funding from AGEWELL to get this research group up and running and to come to Edinburgh for a knowledge exchange visit!

Then, in December, my supervisor, Prof Charlotte Clarke and I were awarded a Knowledge Exchange and Impact Grant from University of Edinburgh so we could put on a symposium for our guests and to attend their symposium in Calgary this February!

So I need to take a moment to encourage all early career researchers to make the most of Twitter as a networking platform…. you never know what opportunities might come from it!

Right, now that you’re all caught up on the past year, two weeks ago, Charlotte and I set off for Calgary and attended a day and a half long planning event!

What are our aims?

Ultimately, our aspiration is to address ways of supporting people living with dementia to go out and about in their communities without fear of stigma or detriment. How are we going to achieve this? Well, that’s something we’re still hashing out. I believe that what makes us unique as a consortium is that we are a multi-agency group. We don’t want just researchers at the table. In Calgary, attendees ranged from community partners, local police agencies, people with lived experience of dementia, home care agencies and the local Alzheimer’s Society.

My key takeaways:

  1. What resources do we have and how we can share them? Can we use our website to share resources better? There is no point in repeating work that has already been done elsewhere.
  2. Charlotte highlighted that we cannot consider ‘missing’ incidents in isolation. What lead to the missing episode? Could it have been prevented? And afterwards, how can we deescalate the risk and encourage independence?
  3. There are challenges with terminology in this field. wandering, missing, lost, eloping, exit seeking, walking, wander-walking, wayfinding etc. These differing terms make it difficult to collate all the evidence. Will we ever settle on an agreed term?
  4. Improve public awareness. A person with lived experience and keen dementia advocate; Roger Marple praised this work but challenged us to work harder and translating this to the ‘end user’. Very few people who live with dementia are aware of the breadth of research that existed to try to help them. That’s on us as researchers to communicate better with people outside of academia.
  5. How do we engage with low and middle income countries? This is a global issue and if we call ourselves an international group then we should strive to include as many countries as possible.

What next?

I’m working hard to plan the symposium in Edinburgh (I’ll update you all on how that goes) at the end of March and a computer science student at University of Alberta is developing a website platform for us. After the second day of the symposium in Calgary, we brainstormed our ‘who, what, where, when, why and how’ and are working on moulding that into our mission statement. Further in the future, we’re looking for opportunities to promote the network at conferences and for funding opportunities to keep the network thriving and growing. It’s been very exciting to be a part of developing an international network like this with multi-agency partners who have the common goal of supporting people with dementia to live in a safe and supportive environment, as independently as possible.

Finally, I’ll leave you with a beautiful sentiment that was said by someone at the symposium that captures our approach to setting up this group perfectly:


“We must move at the speed of trust”


This post was written by PhD student Katie Gambier-Ross, check it out on her own blog: or follow her twitter for more great content: @kgambierross 



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