Family history and professional experiences encouraged an Oregonian to volunteer for the AHEAD clinical trial
Volunteering for the AHEAD clinical trial has given Jennifer Weiss more than one way to give back to her community. Jennifer works with older adults and their families in The Dalles, Oregon, as part of her job with the Department of Human Services. Participating in the nationwide clinical trial has not only expanded her knowledge of dementia, but it has also shown her more ways to help the people she works with.
“I see the effects cognitive decline, dementia and Alzheimer’s on the individuals and their families on a daily basis,” says Jennifer. “It’s a horrible disease process.
Once a month she travels to the Layton Aging and Alzheimer’s Disease Center at OHSU to receive infusions of a new investigational treatment. The AHEAD clinical trial is testing whether this treatment, the antibody lecanemab, can prevent Alzheimer’s disease before symptoms develop. Brain changes related to Alzheimer’s can begin up to twenty years before a person notices any cognitive symptoms.
The study is testing people as young as 55 who have a higher risk of developing symptoms of Alzheimer’s later in life.
“If the research team can learn something from my genetics, then I’ve done something good.”
During each visit, she gets an infusion, but does not know if she is receiving the drug or a placebo. Neither Jennifer nor the study team, led by Aimee Pierce, MD know whether participants receive lecanemab or a placebo until after the study concludes in four years. Sponsored by the National Institutes of Health (NIH) and Eisai Inc., the clinical trial is recruiting 1,400 people across the United States and the world.
Her mother passed away in 2003, ten years after she first started showing symptoms.
“I felt like we lost our mom bit by bit,” says Jennifer. “She was a strong woman, a social and curious person, so it was a painful and frightening process for her to go through as well.”
Jennifer has children and grandchildren. When she thinks about her family’s history with the disease, she’s thinking about them too.
“I don’t want to put my family through that grief,” she says.
During her monthly visits, she knits, reads, and chats with the nurses. She’s learned a lot about brain health and genetics through her involvement in the study.
In addition to monthly infusions, study participants also undergo cognitive testing as well as brain scans that capture images of amyloid and tau. The clinical trial 1team will compare the scans to the results of the cognitive tests, which might help them better understand how Alzheimer’s disease begins to develop.
Those cognitive tests are the same ones that she gives her clients at work, although it is a new learning experience being on the receiving end. The knowledge and insights she has gained from the study have weaved their way into conversations with coworkers and clients.
“Having been in this study, and having gone through what I did with my mother, I can offer insights and help people better understand what their family members might be going through,” says Jennifer.”
A year after enrolling into the study, the experience has given her peace of mind. She encourages others to volunteer, so that researchers can have a better chance at detecting and treating Alzheimer’s earlier.
“It’s so important for people to step up and do what they can to better our society and contribute to research,” says Jennifer. “Without people willing to step up, we really can’t treat Alzheimer’s.”
Learn more about research at the OHSU Layton Aging and Alzheimer’s Disease Center by contacting our team at 503-494-7647 or emailing adresearch@ohsu.edu.
We have information about:
- The AHEAD Study
- Aging and dementia research
- Family caregiver research and support
