Advocates take to Capitol Hill to tell their stories

Anxious whispers echoed through the halls of Capitol Hill as advocates waited to talk to legislators as part of the 2024 AIM Advocacy Forum. For some, this was their first Hill Day; for others, it was part of their long-running advocacy journey.

During the Forum, advocates learned about the importance of storytelling, and many were ready to take their elected officials down the path of what it's like to live with Alzheimer's or care for someone living with the disease.

For Jeanne Caldwell of Huntington, West Virginia, this was her sixth Forum and Hill Day, and her calm demeanor demonstrated this, especially when sharing her experience with the disease. Jeanne lost four women in her family to Alzheimer's: both grandmothers, her maternal aunt and her mother. When sharing her story, Jeanne admitted that years ago she was a bit skeptical and didn't think it could make a difference.

"I was one of those people who thought my voice would never make a difference, and I could not have been more wrong," Caldwell said. "It's been very humbling. We are honored to be the voice of those West Virginians who cannot come to speak for themselves. That's why I'm here."

Thanking a champion

When Caldwell and other advocates walked into Sen. Shelley Moore Capito's (R-W.Va.) office, it was like they were catching up with a longtime friend. Capito, whose parents were affected by Alzheimer's, praised advocates for their efforts and all the strides they have made in West Virginia.

The advocates expressed their gratitude to Capito for her ongoing support for bipartisan solutions on issues impacting people living with dementia, including workforce challenges and the needs of caregivers.

"We want to thank you for your incredible support," Caldwell said. "You are truly our champion. We appreciate your dedication to not only the people who are suffering from the disease but their caregivers as well."

Facing the future

Advocates Laura Dryjanska and her husband, Roberto Giua, of Whittier, California, haven't been impacted by Alzheimer's, but they think about their young children and whether they may face this disease.

"Our hope and the reason why we're here [advocating] is for intergenerational solidarity," Dryjanska said. "We want to see the future generations, as soon as possible, not having to face what so many of our advocate friends are facing today."

Dryjanska and Giua are immigrants from Poland and Italy, respectively. They shared with a staffer from Rep. Linda Sanchez's (D-Calif.) office the stigma that exists in their communities surrounding Alzheimer's and their desire to eliminate it by raising awareness.

"There is so much we can do through awareness, promoting a healthy lifestyle and reducing stigma," Dryjanska said. "There is a lot of stigma among some immigrant communities. It seems like an issue to be ashamed of, and it's very hard for someone to talk to others about this."

Dryjanska and Giua acknowledged Sanchez's passion for this issue and thanked her for her support. They asked for her to carry on this momentum by supporting an additional $318 million for Alzheimer's and dementia research at the National Institutes of Health.

"This [investment] is very important to us as we have already seen a lot of progress," Dryjanska said. "But we have to continue as we hope to celebrate the first survivor of this disease."

Using your voice

When meeting with their elected officials, every advocate shared a unique story about their connection to Alzheimer's. They all had the same passion and asked their lawmakers to continue on a hopeful path that will allow them or their loved ones affected by this disease to have more time.

"We need everybody's voice," Caldwell said. "There are very few families out there that have not in some way been touched by Alzheimer's. This disease is not going away. We still have tons more work to do, and we need everyone's voice."

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