WASHINGTON — Sophia Sawaya reflected on the 17 years since she said her mother Kallie was diagnosed with early-onset Alzheimer’s disease at 50 years old.

“It’s been heartbreaking watching her suffer through this,” Sawaya said. “At first, it was the cognitive decline and then the numerous behavior changes, and now I’m watching my vibrant, active, incredible Greek mom struggle to walk on her own.”

Sawaya moved back to her hometown of Lexington to join her father in caring for her mother, she said.

They are among 150,000 caregivers in the commonwealth, according to the latest available information from the Alzheimer’s Association.  

This week, Sawaya is joining other families from Kentucky and around the country to ask Congress to support legislation focused on the disease.

Rep. Brett Guthrie, R-Bowling Green, has sponsored the BOLD Infrastructure for Alzheimer’s Reauthorization Act.

The legislation supports programs to research the disease and provides services and educational resources for caregivers.

“Getting the opportunity to sit with members of Congress and their staff gives them the face and the name of what these statistics are,” Sawaya said. “It's not just a statistic. It's not just numbers. It is real people, real stories.”

The Alzheimer’s Association estimates the number of people 65 and older with the disease will rise to 86,000 next year, an increase of nearly 15% since 2020.

The BOLD Infrastructure for Alzheimer’s Reauthorization Act has passed out of committee, and Guthrie said he is working to get it through the full House.