A new voice for dementia advocacy

Editor’s note: Dr. Saskia Sivananthan and Alexandra Whate discuss the formation of the Brainwell Institute and its mission to advocate for people living with dementia, their families and their care partners.

Why did you create the Brainwell Institute?

For both of us, it’s a very personal journey. We’ve both experienced 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 means hard but important conversations about everything from long-term care, social care support, medical assistance in dying (MAiD) and caregiver benefits.

We see a gap between the research occurring and getting that evidence out to the public and to policymakers. We want the public to be actively engaged in change for dementia care and to have constructive conversations. We want policymakers to start paying attention to dementia, to caregivers of people living with dementia and the key policy changes that need to happen in dementia.

Why a think tank?

Together with dementia researchers Larry Chambers, Sarah Main, 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 health-care areas. Brainwell’s focus is only on dementia and brain health policy and research. It’s designed as a social enterprise and a nonprofit that is completely independent, which means we can have certain conversations and to take certain approaches that other organizations cannot.

We think of our approach as constructive criticism. The work of our team has always been to have 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 toward a constructive, actionable and implementable recommendation or policy.

How will the Brainwell Institute engage the public and to 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 truly been implemented. There’s no real implementation plan, there are no targets or 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. Our intention as a think tank is to analyze the strategy and look at recommendations that could move it forward in a way that can concretely support people living with dementia through the health system.

Our second goal is to find new ways to engage with a young and diverse audience, primarily through social media. 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 per cent to 62 per cent of millennials and Gen Zs use social media as their first source for health. We’ve started creating articles that use plain language to explain important research and evidence related to dementia. We’re looking at lifestyle factors that are important to good quality of life before and after a dementia diagnosis.

Our third goal is to create a platform for grassroots organizations and diverse community organizations to advocate with in a unified voice. Brainwell is working with diverse communities whose voices have not necessarily been reflected or engaged at a national or provincial level. The platform is also for researchers and journalists who want to be involved 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 exploring this concept 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 with all the surplus going to fund the think tank. The Brainwell Institute will accept funding from foundations and individuals, but no funding will be accepted from government or from corporations so that we can maintain our independence and transparency.

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 co-designing almost all our projects in that way. We will create an advisory committee of people with lived experience who will work closely with us as we build out recommendations around dementia research and advocacy work. It’s really valuable to understand and center the needs of people with lived experience within the organization, particularly those from underrepresented or underserved communities, who need dementia care that respects their cultural and linguistic traditions.

How would you describe Brainwell in one sentence?

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