B.C. senior taking part in dementia clinical trial hopes children, grandchildren will have better access to treatment
A report last month said fewer patients are taking part in clinical trials, even as more than 55 million people worldwide live with dementia
Last updated 13 hours ago
Pierre and Vivianne Seguin, a Port Moody couple, worry about whether dementia will affect their two adult sons and two granddaughters.
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While most cases of dementia are not hereditary, Pierre was diagnosed with young-onset dementia in 2022 at age 62. Early-onset dementia is sometimes linked to genetics.
And the disease has affected many members of Pierre’s family. His mother had dementia and died last year. He lost his sister, who had MS and dementia, in 2021, and three of his brothers are living with different stages of dementia.
“Watching dementia affect so many members of one family is heartbreaking,” said Vivianne Seguin. “We worry about our children and grandchildren and what our family history might mean for them.”
That is why when Pierre Seguin’s physician asked him to join a clinical trial at UBC two years ago, he decided he wanted to contribute to the science — and provide hope for the family.
A report last month from Alzheimer’s Disease International said fewer patients are taking part in clinical trials, even as more than 55 million people worldwide live with dementia, a figure projected to surpass 139 million by 2050 as populations age.
Dementia is an umbrella term for a decline in mental ability, while Alzheimer’s disease is a specific brain disease that is the most common cause of dementia.
The report says 158 potential dementia therapies are being evaluated across 192 trials worldwide, with eight Phase 3 trials wrapping up this year. Phase 3 trials allow researchers to evaluate whether a treatment works consistently across diverse populations and involves hundreds or thousands of participants across many countries.
But an estimated 350,000 volunteers are still needed to participate in clinical trials to meet recruitment needs.
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The authors say many potential participants never make it to trials because of stringent screening criteria, and warn that any progress risks stalling due to a shortage of trial participants.
Other barriers to recruitment, the report notes, are delayed diagnosis, limited access to specialist testing, travel costs, language barriers, and the potential need for a care partner to be present.
“Participation requires a considerable commitment,” said Vivianne Seguin, who was speaking for her husband of 43 years because he finds it difficult to talk due to the illness.
He receives injections every 12 weeks, with follow-up appointments halfway between injections. The trial also involves medical assessments, blood tests, ECGs, MRI scans and cognitive testing.
She said they are under no illusions that the trial will improve his health, although they remain hopeful.
He experienced mixed emotions when he learned of his diagnosis. Although he had known he could be affected by the disease, he was still deeply upset.
For several months, he struggled to acknowledge and accept the diagnosis, she said. But he has always been a strong advocate for science, so participating in the clinical trial felt like a natural decision.
“Taking part in the treatment has given Pierre a sense of contributing to the search for a cure, or at least to finding ways to delay the progression of the disease. This has been meaningful to him.”
He hasn’t suffered from any severe side effects. He did have a headache and nausea after the first injection, but Vivianne said even that improved with subsequent injections.
Dr. Serge Gauthier, a clinical neurologist and director of the Alzheimer’s disease and related disorders research at McGill University, said geography is a major barrier to taking part in dementia clinical trials in Canada.
“People living with dementia and their care partners may need to travel long distances to reach specialist centres and participate in studies that can continue for several years,” he said.
Gauthier says clearer communication is also needed to ensure people understand the research opportunities available to them.
“We understood that participating in early-stage research involved risks and uncertainty. Participation is voluntary, and we know we can withdraw at any time. We have chosen to continue because we believe the research matters,” said Vivianne Seguin.
She said it hasn’t been easy, but she’s grateful for so much support from her husband’s UBC medical team, led by Dr. Robin Hsiung.
“Caregiving brings constant responsibility and uncertainty,” she said.
“What has made such a difference is knowing that I am seen and supported, too. The team recognizes that behind the research participant is a spouse who is also navigating this illness.”
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