Stephen Hume pictured his life as a room full of open windows and doors. Outside, the sun was shining, illuminating the path his life could take as he stepped through one of the countless thresholds.
But when his doctor diagnosed him with Alzheimer’s disease, “all those doors and windows shut, and I was in the dark.”
The House of Alzheimer’s Disease, where Hume found himself after that moment, has but one entrance through a door called dementia, Penn Memory Center Co-Director Dr. Jason Karlawish said.
Speaking at “The Changing Face of Alzheimer’s, Revisited,” a February symposium hosted by Drexel University, Karlawish explained that what he calls the House of Alzheimer’s Disease is slated for substantial reconstruction.
“To enter the House of Alzheimer’s Disease, an Alzheimer’s doctor like myself has to diagnose and label you with dementia. Until now,” he said.
In the new House of Alzheimer’s Disease, clinicians are leaving behind traditional bedside methods — “a backwards-looking narrative exercise to make sense of someone’s story of suffering” — in favor of studying biomarkers and “correlating the actuarial to the clinical,” Karlawish said.
The National Alzheimer’s Project Act, signed by President Barack Obama in 2011, aims to use precision medicine to “prevent or effectively treat Alzheimer’s disease by 2025, and Congress has steadily increased funding to help support this research.
“In a sense, Alzheimer’s is about to have a business model,” Karlawish said.
With biomarker data, researchers are able to quantitate the risk of developing Alzheimer’s disease dementia before there are visible signs of dementia in a patient. Karlawish explained how researchers at the Penn Memory Center are studying why patients want to learn their risk, and if they do, the impacts of knowing this information.
PMC’s SOKRATES (Study Of Knowledge and Reactions to Amyloid Testing) study interviews participants one month and one year after they learn the result of a PET scan that measures brain amyloid as part of their participation in the Anti-Amyloid Treatment in Asymptomatic Alzheimer’s study (A4 for short).
One SOKRATES participant said during her interview that she had not told her children of her result showing elevated amyloid.
“I think my children might start building that into the way they interact with me. I don’t want that,” Karlawish quoted the participant as saying. “They’re my kids, and I don’t want them to filter my interactions with the possibility that I’m demented.”
And Steven Hume also underwent an amyloid PET scan. His result was life transforming as well. He learned he did not have amyloid plaques. He was “undiagnosed” with Alzheimer’s disease.
“Biomarkers — not signs and symptoms, not suffering — will decide who gains entry into the House of Alzheimer’s Disease,” and that, Karlawish said, is the new world of living in the House of Alzheimer’s Disease.