Brain Health Research: Canada and the UK

With this being both mine and the two university’s first Visiting Scholar event experience since COVID-19 I noticed two main things. Firstly, countries are experiencing the ‘return to normal’ at different rates. While the pandemic may seem to be nearly over here in the UK, in Canada masks were still mandatory in several settings and the rules of distancing needed to be respected. Also, hybrid lectures, meaning both an audience online and an audience in person, proved to be a learning curve for everyone involved. Both of these items are to be expected and almost a welcome obstacle showing the end of the pandemic.

Before every lecture at the two centres, staff members read a statement of reflection of being on unseeded territory of the appropriate First Nation who the land was stolen from. This is an exercise in reflection and reconciliation to the Indigenous populations in Canada.

At the University of Victoria’s Institute for Aging and Lifelong Health, I presented my work building inclusive methods into research design. Widening the diversity of participants and members of the public in community engagement in research is both an international and local priority but is historically difficult to achieve and maintain. The emphasis of this talk was on some of the common pitfalls researchers make in their design that inhibit often marginalised populations from participating in academic ventures. I drew on learnings from several communities that I have worked with including people with lived experience of homelessness, care aides in long-term residential care, and older adults in the LGBTQIA+ community. The importance of public-patient involvement (PPI) and co-design methods was also discussed.

I also presented a lecture to the public on ‘Brain Health and Healthy Aging’. Maintaining brain health is one of the greatest challenges of the 21st century, as few other issues will have a similar level of effect on human longevity. Current evidence suggests that early detection and management of modifiable risk factors can reduce, or partially prevent, incidence of dementia. This lecture proved widely popular with over 60 people attending from both British Columbia, and the neighbouring province of Alberta, proving that the public’s appetite for information surrounding healthy aging and the brain is substantial. This lecture is now posted on the Institute for Aging and Lifelong Health’s YouTube page.

After my time at the University of Victoria, I took a ferry over to Vancouver, Canada. Here I worked at the Centre for Research in Personhood and Dementia at the University of British Columbia. I collaborated with Professor Deborah O’Connor and Dr Jim Mann, who is living with dementia, to deliver a workshop on understanding the experiences of living with dementia to field instructors in social work. Here, we drew on research around person-centred and human-rights approaches to propose a more holistic, inclusive and hopeful method for understanding and working with people with dementia.

I delivered a colloquium to the Centre for Research in Personhood and dementia, titled ‘Peer Support and Dementia: Possibilities for Post-Diagnostic Support’. Both in the UK and in Canada, post-diagnostic support and dementia is often under-resourced and fragmented. Peer support between people living with dementia has the potential to reap extremely positive effects for both the people living with dementia, and their care partners. I discussed the developments of my project, funded by a UK Research and Innovation Catalyst Award, to co-develop a peer mentorship program with people living with Lewy Body Disease.

Alongside my lectures in Vancouver, I met with the Flipping Stigma Action Group, a collection of people across British Columbia who are living with dementia and advising a nationally funded project on taking action against stigma and discrimination associated with dementia. They are co-developing a toolkit with the research team to recognise and respond to stigma and discrimination. I met with staff members from the Alzheimer’s Society of British Columbia to both share about the work being conducted at the Centre for Dementia research and to learn more about the work being conducted in the community, and especially with people living with, and caring for, people with Lewy Body Disease.

At both locations, I chaired meetings with their student and graduate student communities. Leading conversations about career progression and research independence, I shared my own story and answered queries from students regarding their own education and career paths. I am especially thankful to have met Dr Mariko Sakamoto, a post-doc on the Flipping Stigma Project and recent recipient of the prestigious Alzheimer’s Canada post-doctoral funding, as well as Karen Wong, a brilliant doctoral student looking at issues related to supporting Chinese Canadian’s living with dementia.

I am very thankful for this experience and already see how this trip has and will continue to positively influence my work at the Centre for Dementia Research at Leeds Beckett University. I look forward to more opportunities opening to other scholars where they may travel and collaborate to share learnings with institutes abroad.