My dementia won’t hold me back. Not Today.

Speaking for those who can't 

When Paul Lea had a massive stroke in his late 50s and was diagnosed with vascular dementia, he pretty much gave up on life for a while.

“It was depressing.  I got angry a lot of the time.  I sort of crawled into a shell and stayed there.  For the first six years my life was hell because I didn’t go outside unless my daughter could be with me. My daughter had to basically retrain me how to live. ”

Part of what got him back to being a full participant in daily life was a decision he made about five years ago to become an advocate for people with dementia through the Alzheimer’s Society of Canada.

“They were very happy about that because first of all, I have dementia, second of all I’m willing to talk about, and third I am able to talk about it. There are a lot of people in the world who are embarrassed and ashamed. I speak for those who can’t.”

That commitment to advocacy continues at CAMH, where Paul is a member of the patient advisory committee.

“Getting involved in dementia research is very important for me because with my journey and experience I can help the direction researchers are going in because of my life experience.”

Anyone who has seen the spark of life slowly fade from the eyes of a loved one knows the heartbreak of dementia.

And they know there is no cure for that heartbreak. Despite all that we have learned about the brain in recent decades, there is currently no effective treatment for dementia and other neurodegenerative diseases like Alzheimer’s. Nothing to stop it. Until then, all we can do is manage the symptoms of disease the best we can with medications and non-pharmacological interventions, or participate in various studies.

All of this makes hope the rarest of commodities for people with dementia and those who love them. But there is real hope in regards to the dementia research taking place at CAMH.

We have learned more about the aging brain in the last 20 years than in the entire history of modern medicine that preceded it. Not so long ago, it was believed that we got the brain we were born with and as it gets older, the only changes that take place in the brain are for the worst. But with modern advances in brain imaging, we can now look inside the brain with unprecedented clarity.

We know through the relatively recent discoveries of cognitive reserve and neuroplasticity that the aging brain is far more flexible and adaptable that we ever thought before. We also now know that proteins called Tau and amyloid plaques, along with brain inflammation play key roles in the early progression of dementia. The more of these deposits that are found in the brain, the more severe the dementia.

Discovering how and why those proteins form in the brain, and what can be done to slow down, stop, prevent or even reverse the damage done to the brain by dementia, is one of the core missions for CAMH neuroscientists who believe that we may be in a golden age of brain research that could see real breakthroughs in dementia research in the years ahead.

“We are not the walking dead,” says Paul. “I think people should support CAMH research because look at all the research that is being done with cancer and heart and stroke. The more people that get involved, the more support there is for these programs, the more research opportunities there will be looking for cures for this disease.”