The Brainwell Institute is a new dementia-focused think tank co-founded by neuroscientist Dr. Saskia Sivananthan, the former Chief Research Officer of the Alzheimer Society of Canada, and research scientist Alexandra Whate, a specialist in evaluation and knowledge translation. 

Dementia Connections caught up with Saskia and Alexandra in the midst of strategic planning to learn more about the Brainwell Institute’s mission to engage in hard but important conversations that will lead to positive change for people living with dementia and their families, and within the Canadian dementia community.

Why did you create the Brainwell Institute?

For both of us, it's a very personal journey. We’ve both had personal experience of dementia with loved ones and experienced the frustration of that journey in the health system, and professionally of course we've both been in the dementia and aging space for many years.

We're both researchers at heart and created the Brainwell Institute to focus in a very practical sense, on advocating and supporting the implementation of evidence-based policy that improves dementia care. This does mean hard but important conversations about everything from long-term care, social care support, MAiD to caregiver benefits.

We see a gap between the research and getting the evidence and the research out to the public and to policymakers. Did you know it takes on average 17 years for research evidence to move into practice?  We want the public to be actively engaged in change for dementia care and to have constructive conversations.  And for policymakers to pay attention to key policy changes that need to happen in dementia.

This evidence to policy push has happened in other diseases. So clearly there's the ability to do it, but the push to make change based on research evidence has not yet reached policymakers in terms of the urgency that surrounds dementia.

The Brainwell Institute’s mission is to cut through the noise to promote dementia research without compromise and to deliver current, evidence-based recommendations that demand attention.

– Alexandra Whate

What is a think tank?

Together with dementia researchers, Dr. Larry Chambers, Dr. Catherine Tong, Dr. Sarah Main, Dr. Rose Joudi and others, we formed the Brainwell Institute as a think tank with a very specific focus on dementia and brain health. Most think tanks tend to take a very economic analysis driven approach, and they might look at all sorts of healthcare areas. Brainwell’s focus is only on dementia and brain health policy and research. And because it is designed as a social enterprise and a nonprofit, it remains completely independent, which means that it allows us to have certain conversations and to take certain approaches that other organizations cannot.

There are many other organizations that are engaged in the dementia space that are doing good work, but there is a significant gap when it comes to advocacy and public engagement with research. For example, as a think tank we will not engage in program service delivery. The Brainwell Institute is an advocacy evidence-based policy think tank focused on dementia – a first in Canada.

We think of our approach as constructive criticism. Criticism does not have to be negative, and it doesn't necessarily have to be oppositional. Criticism can be constructive if you are taking an accurate lens to the work. The work of our team has always been to have more of a collaborative, constructive conversation with others in the dementia community that begins by recognizing our shared intentions and then we build from there. We are absolutely open to collaboration and partnership as long as we are working towards a constructive, actionable and implementable recommendation or policy.

DEMENTIA IN CANADA

• 7 million Canadians will be living with dementia by 2050 - for every person with dementia, there is at least one caregiver, and the makeup of those faces will change over time
• 63% worry about developing dementia (up from 49% in 2019), and many are afraid to discuss the prospect with physicians or their families, overwhelmingly out of fear of what lies ahead
• Canada has 1 geriatrician for every 17,500-population 65+ (target should be 1 per 8,000 65+)
• It takes on average 17 years for research to move into practice
• Multiple studies highlight a majority of Gen Z (ranging from 52-62%) and millennials (ranging from 26-62%) turn to social media as their first source for health-related news rather than traditional medical sources
• Misinformation is rampant – A recent physician evaluation of popular social media posts found frequent health misinformation and almost a third (31%) of such posts could lead to individuals delaying standard treatment or engaging in potentially toxic, expensive, and futile therapies.

How will the Brainwell Institute engage the public and get them involved in conversations about dementia?

Currently, we have three short-term goals to begin public engagement.

The first is policy analysis.  We will start by focusing on the National Dementia Strategy as a key lever for implementing change with appropriate measures and goals. The National Dementia Strategy, while a fantastic strategy, has not been implemented, not truly. There's no real implementation plan, there are no goals and milestones, so we really don’t know what change we are working toward.  The initial funding that was committed for five years also ends this year.

The National Dementia Strategy is an example of a really tangible lever that could be moved forward if the public and policymakers are engaged. Our intention as a think tank is to analyze the strategy and look at recommendations that could enable keeping that strategy moving forward into implementation in a way that can concretely support people living with dementia through the health system.

Our second goal is, unlike I think what most think tanks would do where the audience might be decision makers and policy makers first, we are really looking to engage with a young and diverse audience, primarily through social media. We've started creating articles and publications that use plain langauge to explain important research and evidence pieces related to dementia. We're looking at risk reduction and factors even after you're diagnosed with dementia that could be important and valuable in terms of thinking through how to support good quality of life.

While there's a huge amount of misinformation on social media, it is also the primary source of information and health information. A couple of recent public opinion studies found something like 50 to 62% of millennials and Gen Zs use social media as their first source for health. And so, we wanted to really recognize where people go for information and engage them in that process.  This engagement will also help us to start exploring the intersectionality of dementia - thinking about it in terms of gender, socioeconomic status and cultural background.

Our third goal is to create a platform for grassroots organizations and diverse community organizations to advocate with in a unified voice. Brainwell will engage with more diverse communities whose voices have not necessarily been reflected or engaged at a national or provincial level. We're working at the grassroots level with communities to raise awareness and push forward policy that is implementable for supporting people living with dementia.

The platform is also for researchers and journalists who want to engage in constructive conversations that move the field forward.

Why did you set up the Brainwell Institute as a social enterprise?

We spent a lot of time going back and forth and landed on a social enterprise model because we recognize that in the charity sector, even though it might be unintended, some types of donations and grants can come with expectations that can prevent important conversations from happening. It is essential for us that the Brainwell Institute is independent and that we are transparent about where our funding comes from.

We designed Brainwell as a social enterprise and intend to have revenue from a consulting arm in research and evaluation that will operate on a cost-recovery basis.  One hundred percent of any surplus from the consulting arm will be used to fund the think tank.  The consulting and think tank arms function separately ensuring no conflicts of interest with the analysis and engagement work of the think tank. The Brainwell Institute will accept donations from foundations and individuals, but no funding will be accepted from government or from corporations so that we can maintain our independence and transparency.

The Brainwell Institute’s approach is to work strategically to challenge the status quo with bold research on current issues, pointing to the evidence and speaking up for action to redefine how society perceives and addresses dementia.

– Dr. Saskia Sivananthan

How will the Brainwell Institute involve people living with dementia and care partners directly in your work?

We’ve both had a lot of fantastic experiences working with people living with dementia and really co-designing almost all our projects with them.  I built this approach while at the Alzheimer's Society. We had an advisory committee of people with lived experience who really worked closely with us as we built out recommendations around the research and education work.  Co-design was invaluable to really understand and center lived experience within the organization, as it will be for the Brainwell Institute.

Brainwell’s Advisory Committee will have people with lived experience of dementia, both care partners and those living with dementia from diverse communities. The advisory committee will help guide us in the priority areas, the approach, recommendations and the language of what gets produced through the think tank.

How would you describe the Brainwell Institute in one sentence?

We’re a passionate team of people with deep expertise in dementia and brain health, who believe positive change is needed and are willing to speaking up for action to redefine how society perceives and addresses dementia.