Brain Patient stories Research

Clinical trials provide hope for people living with early-stage Alzheimer’s: Janice’s story

Written by Samantha Sexton

*Only first name is being used for patient privacy.

When Janice* began to have trouble with her short-term memory, she and her husband became concerned.

“My dad had been diagnosed with Alzheimer’s disease in his early 60’s, so I had a pretty good view of what it looked like,” says Janice. “I spoke to my family doctor and was later referred to Sunnybrook.”

Janice, who is now in her mid-seventies, was then assessed by Dr. Sandra Black, renowned cognitive neurologist and Scientific Director of the Dr. Sandra Black Centre for Brain Resilience and Recovery at Sunnybrook Research Institute.

After a series of tests, Janice was diagnosed with Mild Cognitive Impairment. The condition is defined when there is a memory problem or other cognitive complaints by the person or their family, but the person is still able to carry out all activities of daily living. MCI can include problems with memory, word finding or way finding, concentration, problem solving insight and judgment.

Dr. Black’s team, which embeds research into care, offered Janice participation in an observational study called the Brain Eye Amyloid Memory (BEAM) study, which provided a detailed eye exam, cognitive testing, mood and daily function questionnaires, and a quantitative brain scan using Magnetic Resonance Imaging (MRI) and Positron Emission Tomography (PET). After participating in BEAM, Janice was found to have amyloid deposits in her brain, and diagnosed with MCI due to early-stage Alzheimer’s disease.

Living with early-stage Alzheimer’s disease

For Janice, living with early-stage Alzheimer’s disease means she now relies more heavily on her husband for support, and spends a lot of her time doing whatever she can to slow down the disease.

“We eat a Mediterranean diet, have switched to non-alcoholic wine, and spend time walking outdoors and exercising in our home gym,” says Janice. Previous research suggests that physical activity and exercise have the potential to lessen amyloid buildup in the brain, while also decreasing inflammation. “We also aim to get 7-8 hours of sleep each night.”

Janice knows the importance of staying engaged with friends and keeping her brain stimulated, using apps like Duolingo and Wordle regularly.

“We’re planning a trip to Paris shortly, so I’ve been practicing my French every day.”

Joining a clinical trial

Janice and her husband with Dr. Sandra Black, cognitive neurologist and Scientific Director of the Dr. Sandra Black Centre for Brain Resilience and Recovery at Sunnybrook Research Institute.

As part of her efforts to potentially slow down the disease, Janice enrolled in a pharmaceutical clinical trial at Sunnybrook investigating a potential new antibody therapy aimed at blocking the tau tangle formation that co-occurs with amyloid plaques in Alzheimer’s disease. At the Dr. Sandra Black Centre for Brain Resilience and Recovery, researchers are actively involved in several trials testing biomarkers (including in the blood and eyes), as well as new potentially disease-modifying treatments for Alzheimer’s disease and other dementias.

The trial Janice is participating in is a double-blinded randomized control trial, meaning that she and the research team are unaware if she is receiving a placebo or the experimental therapy, which is currently being tested for efficacy and safety.

“My hope is potential therapies like these will slow down the disease for me or others. You can’t be unrealistic, but you can be hopeful.”

She visits Sunnybrook with her husband each month for an infusion, and is closely monitored by the clinical trials team, which sometimes includes assessments like cognitive testing, brain imaging, EKGs, and blood work as well.

Although she doesn’t know if the infusions are helping her, she remains positive. “If things don’t get too much worse, we could handle it. We’re doing everything we can.”

Janice’s advice for other people facing a similar situation?

“As soon as you notice something is off, try to save yourself and your family by doing everything you can. Don’t try to hide it. [This disease] is not going to go easy on you, but there is a lot you can do — don’t give up.”

About the author

Samantha Sexton

Samantha is a Communications Advisor at Sunnybrook Research Institute.

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