Couple together
Leonard Howe was diagnosed with Lewy body dementia in 2016. He and his wife, Naome, want to share their story to help others (Photo: Courtesy Leonard and Naome Howe)

Naome and Leonard Howe are making lunch in their suburban townhouse, just outside of Toronto. Married for more than 35 years, their easy rapport and warmth toward each other is infectious.

"Leonard is my true love, my poet," says Naome, smiling. "We've been through a lot together."

A few years ago, Naome started noticing subtle changes in Leonard's behaviour. He would forget plans they had made, act out his dreams, sometimes fall out of bed.

"There were a lot of things that didn't seem connected, but they started to add up," Naome recalls.

In late 2016, Leonard was diagnosed with Lewy body dementia, the second most common form of dementia (after Alzheimer's disease), which can often lead to a decline in thinking, independent function and mobility.

"I felt a sort of relief at first, at least I wasn't imagining things," Leonard says. "But then I thought, 'Now what?'"

Leonard and Naome shared their experience as part of a virtual event called "The Future of Alzheimer's and Dementia" on Sept. 21, which was World Alzheimer's Day. Watch the full event

They joined a panel of top experts, including Dr. Donald Weaver, a neurologist, chemist and Co-Director, Krembil Brain Institute at UHN, Dr. Saskia Sivananthan, Chief Research & KTE Officer, Alzheimer Society of Canada, and Dr. Andrea Iaboni, a Geriatric Psychiatrist and clinician-scientist, KITE Research Institute at UHN. Award-winning science broadcaster and best-selling author Jay Ingram hosted and gave a short keynote address PDF Icon, followed by a panel discussion and Q-and-A.

Dr. Kevin Smith, President & CEO of UHN, gave opening remarks.

"This event is meant to engage, educate and inspire all of you," he said. "We want to break down barriers between science and the public.

"We want you to know that you are not alone. We are here for you, as doctors, as nurses, as researchers and as institutions. We want to find a cure, but until then, we want to help you live fuller and healthier lives."

Dr. Weaver said, "With more than half a million Canadians currently living with dementia and that number set to rise exponentially in the coming decades, it's our duty to speak out now, to sound the alarm, and to work to find a solution.

"Dementia, and Alzheimer's disease in particular, is quickly becoming a global health threat that we cannot afford to ignore."

Don Weaver
Dr. Donald Weaver's laboratory at Krembil is dedicated to designing, developing and hopefully discovering a cure for Alzheimer’s disease. "This would be life-changing for people living with the disease," he says. (Photo: UHN)

More than 500,000 Canadians are living with dementia, a number that is expected to double by 2035. Globally, 10 million people are diagnosed with dementia every year.

Dr. Iaboni weighed in on the challenges of dealing with COVID-19 for those living with dementia.

"While many of us have adapted to life with this pandemic, people living with cognitive impairments due to dementia have even more challenges adapting, so we have to help them," she told the other panelists.

"Dementia doesn't have a protocol, it crosses all boundaries – health, housing, your ability to work," said Dr. Sivananthan. "That's what makes it so challenging."

Yet, despite the scale of the disease, funding for research has not kept pace.

"We are currently funding about five dollars per person diagnosed with dementia," said Dr. Sivananthan. "That is the lowest funding for a disease, period, in Canada.

"The next closest disease funds more than double per person and has half the impact economically," she says, adding, "Just a few generations ago, we had hospitals filled with people who were living with polio, who had no other options. Within a few decades, we have been able to eradicate that because we recognized the crisis and we funded the research to do it.

"I believe dementia is at that tipping point right now."

At Krembil, Dr. Weaver's laboratory is dedicated to designing, developing and hopefully discovering a cure for Alzheimer's disease.

"A breakthrough to me would be what's called a disease-modifying drug, a drug which, when you take it, stops the disease in its tracks," he says. "For people living with Alzheimer's disease or dementia, this would absolutely be life-changing."

For those living with dementia, such as Leonard and Naome Howe, a breakthrough cannot come soon enough. Until then, they have committed to helping others by sharing their story, for as long as they can.

"Leonard is in early stage dementia and he's very self-reflective, and so what a great opportunity to be able to communicate to people what that experience is like," says Naome. "We hope it might matter to somebody."

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