A Blueprint for Better Care

Rebuilding Canada’s Dementia Care System.

A man named Vince showed Dr. Saskia Sivananthan how Canada is falling short for people with dementia. At the time, she was a graduate student at McGill University and a researcher with a lifelong interest in the brain and Alzheimer’s disease (AD). 

“But a lot of the work I was doing was bench research, basic science. I realized I was not really seeing people living with the disease. What did it feel like? What were their experiences?”

Dr. Sivananthan started volunteering at the Memory Clinic in Montreal’s Jewish General Hospital, where she came face to face with people dealing with dementia. And she began helping her neighbour Vince, a man in his 60s with mild cognitive impairment that was getting progressively worse. 

Vince had no family, no supports and with a variety of health issues was constantly calling ambulances and going to emergency rooms. She helped him get fresh groceries, picked up his prescriptions and would visit him in ERs across the city.

“In hindsight, I realized I basically became his proxy caregiver. You know, I started just doing things that a good neighbour would do, but it became more than that.”

Vince reciprocated when he could, ordering food for her after she had worked a 12-hour day and would call to check in on her, knowing that she was struggling alone in a new city.

One Christmas, while visiting family in Vancouver she became concerned when Vince was not answering her calls. When she returned to Montreal, he was not in his apartment. Vince had called an ambulance one more time and it was the last time.

He passed away alone in an ER room somewhere. So I think that was the reason why I felt so strongly about wanting to make sure that that does not happen. It should not continue to happen if we can start building the kind of infrastructure that connects that journey.

Dr. Sivananthan spent more than five years as the Chief Research Officer for the Alzheimer Society of Canada while also serving on an advisory board on dementia for the Public Health Agency of Canada. She saw the value of the community programs provided by the Alzheimer Society, along with research and education initiatives lead by organizations like Women’s Brain Health Initiative (WBHI). 

But in attending many conferences over those years, she found a common theme kept arising.

“There was really a void when it came to taking so much of the research and evidence that has been funded and making a really concentrated effort to moving that into policy and system change. And there were all these programs being provided that were not connected. I was hearing over and over again how important co-ordination was, how useful navigation is, where the gaps were in the pathway, and that none of those things existed.”

In an effort to fill those gaps, she and co-founder Alexandra Whate, a research scientist, launched the Brainwell Institute in 2024.

It describes itself as “an independent dementia-focused think tank committed to elevating evidence and igniting change for issues that matter. Now.”

In its short existence, Brainwell has made its voice heard, notably with its report “Mind the Gap, Closing the Care Divide for Canadians with Dementia.” It delivered a stern analysis:

While Canada has the potential to be a leader in innovative solutions, we were the last G7 country to release a national dementia strategy. And compared to our peers, we’re lagging behind in turning strategy into action.

The report pointed out that since the national strategy on dementia was launched in 2019, Canada has supported more than 70 pilot projects in dementia care, but: “without national coordination, pathways, or scale-up plans, these successes remain scattered and short-lived. We are innovating without integrating, which means life-changing solutions remain stuck at the local level with small-scale impacts.”

“Mind the Gap” noted that it takes on average two years for dementia to be diagnosed, that services remain “fragmented,” all while caregivers face crushing burdens and rates of AD are predicted to skyrocket.

Dr. Sivananthan says such other nations as Denmark, Germany, and Austria have done much better, and that we have Canadian models that offer helpful lessons in co-ordination. The Canadian Partnership Against Cancer (CPAC) and the Canadian Stroke Network have both made significant strides in improving care. She saw it in the experience of her aunt, who was diagnosed with cancer during the pandemic. 

“A whole support system wrapped around her, lead by her daughter who was her primary caregiver. She was linked up with home and community care within days. And that was when our system was extraordinarily stretched in the pandemic. That was what really helped me see that it is possible to do.”

To improve care, “Mind the Gap” recommended a national implementation plan for the dementia strategy, along with the creation of a co-ordinating body, modelled on CPAC.  It called for measurable goals and ongoing monitoring, supported by sustainable funding to make it happen. But Dr. Sivananthan stresses that the real work is at the provincial level, which delivers the care.

To that end, Brainwell has organized provincial task forces, starting with Ontario, Quebec, New Brunswick, and Alberta. Their job is to develop a roadmap that would lead to better co-ordination of dementia services.

Dr. Sivananthan acknowledges that it is challenging to win support from government in the current economic climate, but argues that better dementia care is not only desirable on a human level, it can be a cost-saving, given how many people with AD end up in emergency rooms.

“I’m not naive to how difficult it is going to be right now. But it is nation building.”

It’s infrastructure that provinces already have and just hasn’t been co-ordinated for dementia.

“People still very strongly identify with the public health system and are proud of it. It’s an investment.”

Brainwell is winning admirers from other leaders in the field.

“Saskia and her colleagues have identified an important gap in Canadian dementia care,” said WBHI Founder and President Lynn Posluns. “She has become a champion in advocating for a better, more co-ordinated system that we desperately need.”

Brainwell is also using its platform to promote the spread of innovations in care, particularly the concept of dementia rehabilitation, which was highlighted in the recent “World Alzheimer Report 2025.” Although there is no cure for dementia, the report highlighted that occupational therapy, speech therapy, and physical therapy can help people better cope with the progression of the disease. 

Working with a physical therapist, for example, means access to strengthening exercises that reduce the risk of falls. Occupational therapy can be the key to maintaining reading and writing skills, which can erode with cognitive impairment.

There’s a lot around rehab that is untapped and not even offered with dementia care.

“You want to be realistic about the goals that you’re trying to achieve. This is not going to reverse or cure. But there’s very good evidence for improved quality of life and maintenance of skills, which can decline much more rapidly if those skills are not reinforced through rehab. It’s taking a positive approach focusing on achievable goals, not loss,” continued Dr. Sivananthan.

Brainwell is a young organization that has already made an impact. Dr. Sivananthan does not intend for it to grow old. It has a singularly focused goal of creating a more co-ordinated approach to dementia care in Canada. Once that is done, so is Brainwell.

“We see it as about a seven-year mission. It needs to fulfil this mandate and then retire itself after achieving its objectives.”

Source: Mind Over Matter 22