As the sixth participant in Rhode Island's START study, David Hayes and his wife of 57 years, CarolAnne, have spent nearly two years helping advance research that could change the future of Alzheimer’s treatment. This is their story.
Finding Purpose in Uncertainty
Sitting outside his home in Charlestown, Rhode Island, just a mile from the beach, David Hayes reflects on the experience. What started with concern has turned into a mission.
“The whole program has been a blessing for me,” David says. “We can only say good things have come out of the program for us.”
David’s motivation is personal. His mother spent the last five years of her life in a nursing home, unable to recognize her own name or his. Genetic testing later revealed that David carries a gene linked to a higher risk of Alzheimer’s.
When traditional medications weren’t possible due to his medical history with blood thinners, the newly launched START study opened a door.
“If this can help somebody else, then it’s worth doing,” CarolAnne explains. “In addition to helping yourself, if you’re helping somebody else, that’s a very worthwhile thing.”
Helping others has always been part of the Hayes’ life. For more than 15 years, they volunteered at the Charlestown Animal Shelter. Today, they serve their community through the church and deliver meals to homebound neighbors every Wednesday.
Joining the START study fit naturally with that commitment to service. The trial is testing CT1812, an investigational drug designed to target the buildup of plaque in the brain – working differently than medications that only manage symptoms.
For nearly two years, David has taken two capsules every morning as part of the double-blind, placebo-controlled trial. Neither he nor the research team knows whether he’s receiving CT1812 or a placebo.
“That was a concern at first,” CarolAnne admits. “But we really don’t know, and we’ll only know after September if there’s been any positive effect.”
The monthly trips to Butler Hospital quickly became more than medical appointments. “Even if it’s just for blood work and 15 minutes, the people we see there make it a very supportive, positive environment,” she says.
As David nears the end of his two-year commitment, one challenge looms large: participants can’t continue with the medication after the study ends. Unlike some previous trials, there won’t be an extension due to funding limitations.
“That’s been disappointing,” CarolAnne shares. “In the past, there were usually some options after the study. Right now, that’s not possible.”
They won’t know the study results until all 540 participants across 50–60 centers complete their two years, and the FDA analyzes the data. Until then, their connection with the Memory and Aging Program continues to provide support and updates.
Through Butler Hospital, the couple also connected with CareLink – a now-discontinued program offering resources for caregivers. For CarolAnne, the group sessions were a lifeline.
“I started as the new person, learning what I needed to do,” she says. “Now, when new people come in, I can share the things that helped me.”
David has also found meaning in the process. “I feel much more positive. Whatever degree we can help as individuals, it’s benefiting people who need it.”
The Hayes family is determined to keep pushing Alzheimer’s research forward. Their advice to others is clear: don’t wait.
“There are enough people who’ve been impacted by this disease that it needs to be a higher priority,” David says. “Eventually, it’s going to touch everybody’s life in some way. To sit back and wait might not be the wisest choice.”
CarolAnne agrees. “Just in the last five years, there’ve been a lot of advances. If you can do something as an individual to keep that progress going—that’s what we want.”
Despite the uncertainty of what comes next, the Hayes family remains hopeful.
“I have a distinct feeling that in big ways and small ways, progress is happening,” David says. “I think we may be on the cutting edge of some solutions that could benefit a lot of people.”
Their story is a reminder that behind every clinical trial are real people making real sacrifices – not just for themselves, but for countless others.
As CarolAnne puts it: “Life is simpler now. We take things one day at a time and appreciate what’s happening.”
The START study continues to enroll participants ages 50–80 with mild Alzheimer’s disease or mild cognitive impairment. To learn more, contact the Memory and Aging Program at Butler Hospital at (401) 455-6402 or memory@butler.org.