By Grace Niewijk / UChicago Medicine
For people living with primary progressive aphasia (PPA), a rare, early-onset neurodegenerative dementia that predominantly affects language abilities, something as simple as ordering their favorite meal at a drive-thru can be a deeply meaningful marker of independence.
Led by experts at the University of Chicago’s Healthy Aging & Alzheimer’s Research Care (HAARC) Center, researchers recently published positive results from a clinical trial testing a telehealth intervention designed to help people with PPA maintain their independence for as long as possible.
Designing a rigorous non-drug trial
The Communication Bridge 2 (CB2) trial, which involved 95 “dyads” consisting of individuals with PPA and their primary communication partners, is the first randomized controlled trial for PPA speech language intervention. Most previous studies were very small, studying as few as one to three individuals — much too small of samples to draw firm conclusions.
“Those studies have been instrumental in helping us pinpoint promising approaches, but they’re insufficient for changing the field of practice,” said first author Emily Rogalski, PhD, the Rosalind Franklin PhD Professor of Neurology at UChicago and Director of the HAARC center. “We ran this trial with the same rigor you’d see in a drug trial, combating the common belief that non-pharmacological interventions are unsophisticated ‘soft science.’”
Dyads were randomly assigned to one of two intervention groups. Rather than comparing “treatment” to “no treatment,” the CB2 trial compared two different approaches of telemedicine speech therapy to determine if one was more efficacious than the other.
“Unfortunately, intervention options for people living with PPA have been limited. This trial and related research aims to change that landscape,” Rogalski noted. “The video chat approach allowed for enrollment globally across four countries and multiple states in the U.S.”
One intervention focused on “impairment-based” interventions: activities focused directly on trying to regain what the individual with PPA had lost, such as retraining words that had been forgotten. The other intervention was more personalized, guided by goals set both by the individual with PPA and their communication partners. In addition to maximizing communication, the clinicians also helped people develop strategies and plans that could help them reduce barriers to communication now and in the future.