Primary progressive aphasia (PPA) is a cluster of neurodegenerative disorders characterized by insidious loss of speech and language, which over time severely impairs the ability to articulate, remember words, understand others, and in some cases even comprehend the use for common objects, like a spoon or a key. There are several variants of PPA, which are associated either with Frontotemporal Degeneration, the most common form of dementia for people under the age of 60 (theaftd.org), or, in some cases, Alzheimer’s Disease pathology. While knowledge of PPA has begun to increase in the healthcare community, it can still take more than three years for families to receive an accurate diagnosis, delaying access to treatment. Due to the young-onset of PPA, difficulty accessing resources is further exacerbated by the fact that many caregivers are still working full time to support families that may include young children.

To assist in bridging this critical gap in services within the greater Philadelphia community and beyond, the MossRehab Aphasia Center developed a program called the Strategy Training and Education Program for People Living with Primary Progressive Aphasia (STEP-LPPA). This pilot program, funded by the Albert Einstein Society, provides communication, psychosocial, and educational support to individuals with PPA and their primary care/communication partners. Participants receive individualized training and information regarding support services in a service-delivery model designed to maximize building friendships and a community for long-term support. Direct programming occurred over the course of approximately one month in the late spring of 2022, with follow-up support sessions planned through November 2022.  Participants with a diagnosis of PPA and their communication partners provided feedback throughout the course of the month-long program and will continue to have the opportunity to share their thoughts and advice.

People with PPA

“I think this is what we have to have. When we started, it [PPA] was weird, now it is not.”

“I have taken so much. I didn’t know what it [PPA] was, but now … It is very comforting.”

Communication Partners

“I feel like I’ve become a better caregiver”

“There are things I have never said to anyone else that I have said in this group.”

“We’re so grateful to each of the pilot participants for their dedication to the program and their willingness to provide us with such informative feedback. It was a true pleasure getting to know each of them.” says Sharon M. Antonucci, PhD, CCC-SLP, Director of the MossRehab Aphasia Center.

This article was adapted from an article originally published in the 2022 MRRI Letters annual newsletter.