By Grace Niewijk
Imagine gradually losing the ability to express yourself — not because you've forgotten the words, but because they simply won't come out. This is the reality for individuals living with primary progressive aphasia (PPA), a rare form of dementia that usually begins in middle age and increasingly impairs language abilities over time.
Researchers at the University of Chicago Medicine are working to illuminate the struggles of those living with this condition and pioneer accessible treatment models. They recently published new studies that measure PPA’s significant impact on quality of life and demonstrate the feasibility of international telemedicine interventions — research that could reshape care delivery and inform policy decisions.
Understanding PPA
PPA is a unique neurological condition that primarily affects language skills, setting it apart from more common and well-known forms of dementia like Alzheimer's dementia that primarily impacts memory in the earliest stages.
“PPA is a relatively rare dementia,” said Emily Rogalski, PhD, the Rosalind Franklin PhD Professor of Neurology at UChicago and a leading researcher in the field. “It's often overlooked in the literature because it can be difficult to assemble large groups of people to survey lived experiences.”
She said it’s frequently overlooked by medical professionals as well, going undiagnosed particularly among those with lower socioeconomic status.
“Lack of diagnosis can be such a barrier to care for anyone not living next to a specialized medical center,” she said.
A feature that makes PPA especially challenging is its early onset.
“These individuals are at a different life stage from late-onset Alzheimer’s dementia patients,” Rogalski said. “They're often still in the prime of their working career; they may have young children in the home.”
This can mean PPA not only affects the patients but also has significant implications for their families, family relationships and economic stability.