Dr. Sharon Cohen, the medical director of Toronto Memory Program, has made a career of being a purveyor of hope, but she stands firmly by her patients’ sides, even when there’s none left.
On the hope side, she’s learned a lot over the past 15 years: advances in understanding Alzheimer’s disease have been furthered through the active development of new approaches to treatment and prevention that are being tested through clinical trials at the Toronto Memory Program. This puts Cohen’s clinic in a position to convert its research facility into a treatment centre, when a compound that can be used in the treatment of dementia is finally approved. It’s already the go-to place for clinical trials, manifesting Cohen’s vision of “one-stop shopping” for people who have memory concerns.
“Let’s take people who are worried about their memory and see what’s there, make it a less scary. There are many myths, well-meaning but not scientific advice. We’re happy to see healthy people, keep them healthy and give good news. And if there’s a problem, let’s deal with it through best standard of care plus clinical trial opportunities,” said Cohen.
The shy, curious person that Cohen describes herself as is evident in the thoughtful way she approaches her patients. While meetings often include the patients’ families, Cohen is careful to always direct the conversation toward the patient, regardless of what stage that person’s dementia is at. Cohen holds a graduate degree in speech-language pathology, noting that how people string words together can reveal how the brain is misfiring. She embraces the humour therein.
“We laugh a lot with our patients. There are funny moments and there’s no point pretending they’re not. So when somebody says, ‘Can you pass my testicles?’ instead (of) ‘my spectacles,’ rather than pretend I didn’t hear, I’ll say, ‘Did you really mean testicles?’ and we’ll laugh about it.”
Cohen’s undergraduate degree in art history shows up in the art that graces the clinic’s walls. Rembrandt is Cohen’s favourite for “introspective portraits that seem to peer into the soul.”
The clinic employs a team of 30 doctors, nurses, clinicians and researchers, but there’s not a lab coat in sight. Cohen sets the tone – stylish yet casual, her demeanour warm, down to the soft resonance of her voice. Empathy is everywhere, from the care when drawing blood from seniors’ shrunken veins, to the fact that blood work is done on site. Sending patients to a lab and expecting them to report back may seem straightforward, but when patients struggle with memory, it can cause anxiety, confusion and delays. Cohen abhors delays.
“It doesn’t appeal to my nature to drag health care out, especially where delays have consequences. In a disease like Alzheimer’s, brain cells are dying. Playing catch-up doesn’t work well,” she said.
Sometimes it’s hopeless. One of Cohen’s patients, who was still mentally competent, requested physician-assisted dying. Cohen helped orchestrate it, advocating for him from a human rights perspective.
“This gentleman, whom I feel so fondly towards, really we were saying goodbye. He’d been my patient for many years and I thought, this is the last time I’ll see him, then I’ll read his obituary. It was very poignant,” she said.
“I asked if he had any regrets. He told me his only regret was that he couldn’t do something about Donald Trump, and we laughed. His son-in-law said, ‘You know, dad, maybe you can do something from the other side. Maybe Trump will slip on a banana peel and we’ll know it’s you.’ Imagine having a good laugh together, knowing that the next day, he’ll have medications administered to end his life.
“I feel privileged to enter people’s world in such a personal way. I don’t take it for granted and I don’t block the emotions because we can relate to each other if we embrace it all.”
Cohen played an influential role in a court case that led to the legalization of assisted dying, writing affidavits on behalf of herself and one of her patients, Nagui Morcos, who took his own life before the law was changed.
“I was part of that process and now, in my practice, I use it to my patients’ advantage. It’s not up to me what constitutes quality of life for any individual, but when a patient tells me they’ve had enough, and they meet the criteria of being mentally competent despite advanced Alzheimer’s, I can help with medical options. The majority of patients with advanced Alzheimer’s will have lost the capacity to direct end-of-life decisions, which is really a tragedy. Canada’s assisted-dying law applies more easily to ALS and cancer, when people are more likely to be mentally competent,” she said.
Cohen has a personal connection to Alzheimer’s disease, but didn’t choose the field because of it.
“I’ve been fascinated by the brain since the age of 10 and destined to go into neurology. I was interested in psychology and psychiatry before I knew the terms. I liked talking to people, knowing what makes people tick,” she said.
“When I was a teenager, both my grandmothers developed Alzheimer’s. The diagnosis wasn’t readily forthcoming, but I figured it out over time. I wish I could have been more helpful to my parents. Now I understand the doc talk, but back then, I don’t think anybody was giving very clear direction. I found it intellectually interesting to see how memory was failing. Much later, my father developed Alzheimer’s. By then, I was a practicing neurologist and understood much more profoundly what was happening to him, to the family. He passed away, somebody I love to this day … a mathematician, a very smart guy, a musician. It had a big impact on me. And now we’re looking after my mom, who has Alzheimer’s. I feel sometimes I’m a walking time bomb. Who knew? Mom, dad, both grandmothers.
“I feel that I have special insight, that I’m privileged to observe this disease, that I know it inside out, personally and professionally, because beyond my own family, I’ve seen thousands of individuals and their families deal with this disease over the past 25 years. There’s definitely a blending of experience: what it means to look after someone you love, but also, how do you bring this scientific information together, provide clear, helpful information to patients and families and give hope? How do you speak to your kids about it and ensure the future is better for them?
“It’s ironic, a heavy load in my family. I’ve actually had APO-E testing. I’m all about prevention. I’m not scared about the future. I think about it for me, for my family. It just makes me want to work harder. It reminds me that ya, there’s a real need here and there’s a lot we can do together.”