National Aphasia Awareness Month provides an important opportunity to ‘spread the word’ about not only chronic, but also progressive, aphasia. Primary progressive aphasia (PPA), a neurogenic language impairment that can result from fronto-temporal degeneration or less typical presentation of Alzheimer’s disease,1 affects an estimated 3 - 7 per 100,000 people in the population.2, 3 Across the three variants of PPA, non-fluent, logopenic, and semantic, people can experience a range of symptoms, including a reduction in utterance length and ability to initiate speech, difficulty with word-finding and making errors in language production, difficulty understanding others, and even loss of the understanding of the meaning of words.4 This has a devastating effect on not only the person diagnosed with PPA, but also their entire family. These challenges are exacerbated by the fact that, due to lack of awareness in medical community, it can take up to several years for families to receive an accurate diagnosis and begin to receive appropriate support.5 Lack of awareness in the broader public can also have a negative impact on families, who may feel isolated from those around them due to communication breakdowns and lack of understanding.
Considering the critical need for increased awareness of PPA, those at The Aphasia Center at Jefferson Moss-Magee Rehabilitation were grateful to participate in the inaugural Primary Progressive Aphasia Awareness Day, an initiative of The International Speech and Language Therapy / Pathology Primary Progressive Aphasia Network, led by Anna Volkmer, PhD (University College London). Across the globe on April 4, 2025, live, virtual presentations were shared to provide education and resources related to PPA, to discuss the value of speech-language treatment for those living with PPA, and to highlight the voices of those living with PPA. The U.S. webinar, hosted by the National Aphasia Association, resulted from the collaboration of stakeholders across the clinical, outreach, and research communities. Moderated by Kiiya Shibata (Vanderbilt University), who provided a foundational overview of PPA, the webinar included information on evidence-based speech-language treatments (Sharon M. Antonucci, PhD, CCC-SLP, C-AAIS, Jefferson Moss Rehabilitation Research Institute), treatments and resources for multilingual individuals with PPA (Stephanie Grasso, PhD, CCC-SLP, University of Texas at Austin), the value of community support groups (Jeanne Gallee, PhD, CCC-SLP, University of Washington), and the state of the research evidence (Dr. Maya L. Henry, PhD, CCC-SLP, University of Texas at Austin). Also highlighted were the perspectives and creativity of those living with PPA, including, the YouTube channel, Peter’s Classical for Friends.
We are already looking forward to next year’s International Primary Progressive Aphasia (PPA) Awareness Day, which will be held on April 10, 2026. Mark your calendars!
References
1. Ramanan, S., Irish, M., Patterson, K., Rowe, J. B., Gorno-Tempini, M. L., & Lambon Ralph, M. A. (2022). Understanding the multidimensional cognitive deficits of logopenic variant primary progressive aphasia, Brain, 145(9), 2955-2966.
2. Bekkhus-Wetterberg, P., Brækhus, A., Müller, E. G., Norvik, M. I., Winsnes, I. E., & Wyller, T. B. (2022). Primary progressive aphasia. Primær progressiv afasi. Tidsskrift for den Norske laegeforening : tidsskrift for praktisk medicin, ny raekke, 142(17), 10.4045/tidsskr.22.0100.
3. Roytman, M., Chiang, G.C., Gordon, M.L., & Franceschi, A.M. (2022). Multimodality Imaging in Primary Progressive Aphasia. American Journal of Neuroradiology ,43 (9), 1230-1243.
4. Gorno-Tempini, M. L., Hillis, A. E., Weintraub, S., Kertesz, A., Mendez, M., Cappa, S. F., Ogar, J. M., Rohrer, J. D., Black, S., Boeve, B. F., Manes, F., Dronkers, N. F., Vandenberghe, R., Rascovsky, K., Patterson, K., Miller, B. L., Knopman, D. S., Hodges, J. R., Mesulam, M. M., & Grossman, M. (2011). Classification of primary progressive aphasia and its variants. Neurology, 76(11), 1006–1014.
5. The Association for Frontotemporal Degeneration. 2025. https://www.theaftd.org/what-is-ftd/disease-overview/