A view from a Canadian

A view from a Canadian

Sometimes it’s hard to see the wood for the trees, to realise how much dementia activism has already achieved in the UK. But Sheila Novek, a visiting PhD student from Canada, was bowled over  when she took part in a DEEP event which took place in London this March. “The passion, creativity and energy of the people I met were an inspiration” she says – and she will take this experience back to her colleagues in Canada. Read more in her blog…


I recently had the opportunity to attend a workshop in London involving some members of Dementia Engagement and Empowerment Project (DEEP), the network which connects and supports independent organizations around the UK that are led by, or actively involve, people with dementia. Members from three of these groups attended the workshop to identify new ways to collaborate with DEEP to support the efforts of local groups engaged in dementia activism. The workshop was part of the IDA (Impact of Dementia Activism) project, which is funded by an ESRC impact accelerator award held at E-CRED, Edinburgh Centre for Research on the Experience of Dementia.

Over two days, I had the privilege of getting to know dementia activists and their allies and learning about the landscape of dementia activism in the UK.  I was moved by their passion and dedication and inspired by the impacts of their collective efforts. I learned about the many contributions they are making to their communities and to society more broadly.  From helping local businesses become dementia friendly, lobbying for better services and supports, and campaigning to end the stigma of dementia, it was clear to me that people living with dementia are effecting positive change.

The workshop was the first time I came to know people living with dementia who were open about their illness and candid about their experiences and aspirations.  What struck me were their unique perspectives and the insights that come from first-hand experience of living with their condition.  I also began to understand what it means to live well with dementia and some of the challenges that entails.  At the end of the workshop, I had a much better appreciation of the value of these perspectives, and their potential to change public perceptions and shape more effective policies and services.

In Canada there are currently no similar organizations led by people with dementia advocating for change.  The passion, creativity and energy of the people I met were an inspiration. When I return, I plan spread the word about the innovative work happening across the UK and I hope it takes off in Canada soon!


Sheila is a PhD student from Canada - currently a visiting post-graduate student with the E-CRED.

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