Global telemedicine therapy for dementia shows benefit in clinical trial

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 have 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.

The findings are published in the journal Alzheimer’s & Dementia.

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, Ph.D., the Rosalind Franklin Ph.D. 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 to 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.

Evidence for tailored speech therapy intervention

Over the course of a year, someone with a neurodegenerative disease would normally expect to experience a decline in their quality of life as their disease continued to progress. But CB2 participants on average showed significant improvement in the communication goals they set with clinicians at the start.

Both intervention groups showed some benefits—a positive indication for the field that speech therapy is generally helpful—but the more personalized intervention proved to be more effective.

“This trial offers the next-level, gold-standard evidence for a pragmatic intervention to improve quality of life for people affected by PPA,” said Penny Dacks, Ph.D., Senior Director of Scientific Initiatives at the Association for Frontotemporal Degeneration (AFTD).

“Seeing people with FTD experience quantifiable gains towards goals that matter to them is a real source of hope, and a reminder to us all that some of the most important treatments can be non-pharmacological.”

Many of the goals people were able to achieve were deeply personal. Someone whose stated trial goal was “public speaking” was able to give a speech at their child’s wedding; others achieved “participating in conversations in group settings” in time to celebrate treasured family holidays or resume going to their friends’ dinner parties.

“These benefits can help extend independence in activities of daily living, whether that means supporting relationships with friends and family, participation in community activities, or daily tasks,” Rogalski said. “It’s meaningful no matter which way you look at it.”

Moving toward implementation with Communication Bridge 3

Even as they continue analyzing troves of data from CB2, Rogalski and her collaborators are enrolling participants in the next trial. Communication Bridge 3 is a step further in the direction of real-world implementation.

“We want clinicians and the public to know that this intervention has proven useful and accessible at the appropriate level of evidence,” Rogalski said.

“As we work towards robust pharmacologic options, this trial suggests there are actions we can take now to maximize quality of life for those living with PPA. Such opportunities should not be overlooked, as they can have a meaningful impact.”