Primary Progressive Aphasia and Non-Medical Factors Related to Health Outcomes: A Retrospective Study




Primary Progressive Aphasia, diversity, equity, inclusion, and justice, Care access, communication sciences and disorders, Neurodegenerative Disease


Primary progressive aphasia (PPA) is a neurodegenerative disease involving insidious onset language loss in the context of relatively spared cognitive function, where language is the initial and dominant factor impacting activities of daily living (Mesulam, 2001).  Detection and identification of PPA requires a level of interdisciplinary expertise and resources that are not uniformly available across healthcare settings at the local and global levels (Bahia, 2007; Duran-Aniotz et al., 2021; Guimarães et al., 2013; Hogan et al., 2016; Knopman & Roberts, 2011; Onyike et al., 2020; Pijnenburg et al., 2004). This potential inequity raises concerns for increased risk of underdiagnosis, misdiagnosis, and/or delayed diagnosis of PPA, in turn impacting access to the required specialty care. The current study sought to characterize the PPA population at a Southeastern United States academic medical center, and to examine potential delays in PPA diagnosis and access to speech-language pathology services related to social determinants of health. We hypothesized that individuals from minoritized and otherwise disenfranchised groups would have longer duration of time between first reported symptom, and PPA diagnosis. Further, we hypothesized that these groups would be less likely to be referred to speech-language pathology services. Our results revealed a significant lack of sample diversity in terms of race, ethnicity, language practices, and queer identity. Within our overwhelmingly White, non-queer-identifying sample, factors related to rurality and economic status did not predict time to diagnosis or referral to speech pathology. A discussion of PPA and related disorders as they relate to social determinants of health follows.


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Author Biographies

Nickolas Simpson, Vanderbilt University

Nickolas Simpson is a Master of Science in Speech-Language Pathology student in Vanderbilt’s Department of Hearing and Speech Sciences. He received a Bachelor of Arts in Bible & Ministry and French from Harding University. His current research interests include the way in which culture and identity mediate experiences of the healthcare system and the field of Speech-Language Pathology.

Jerica Reeder, Vanderbilt University Medical Center

Jerica Reeder is a Clinical Translational Research Coordinator III in the Department of Neurology at Vanderbilt University Medical Center. She earned her Bachelor of Science in psychology with a minor in biology and sociology from Tennessee Technological University. Jerica is the lead coordinator for ALLFTD working with various dementia-related disorders such as Frontotemporal Dementia, Primary Progressive Aphasia, Progressive Supranuclear Palsy, Corticobasal Syndrome, FTD-Motor Neuron Disease and Alzheimer's Disease. In addition, she coordinators the clinical drug trial, Alector, enrolling GRN positive Frontotemporal Dementia Patient. Jerica co-facilitates the FTD support group and FTD community events. 

Ryan Darby, Vanderbilt University Medical Center & Vanderbilt University

Ryan Darby is an assistant professor of neurology at Vanderbilt University Medical Center. He currently sees patients as the director of the Frontotemporal Dementia Clinic in the Department of Neurology at VUMC. He received his undergraduate degree from Princeton University in psychology and neuroscience, and his medical degree from Vanderbilt University. He trained in neurology at Massachusetts General Hospital and Brigham and Women's Hospital as part of the Partners Neurology/Harvard Medical School program. He then received the Sidney R. Baer, Jr. Research Fellowship in Clinical Neurosciences at the Beth Israel Deaconess Medical Center. He simultaneously completed a clinical fellowship in behavioral neurology and neuropsychiatry at Beth Israel Deaconess Medical Center, Massachusetts General Hospital, and McLean Psychiatric Hospital in Boston. Dr. Darby is the principal investigator of The Darby Lab, which investigates the neural mechanisms underlying the most complex human behaviors at the interface of neurology, psychiatry, and philosophy. Impairment in belief, morality, and free will perception are common in neurological patients, but the neuroanatomy or cognitive processes associated with these impairments remain unknown.  The Darby Lab’s overarching hypothesis is that these behaviors will not localize to a single brain region, but rather to common networks of connected brain regions that work together to bring about complex human behaviors. 

Michael de Riesthal, Vanderbilt University Medical Center & Vanderbilt University

Michael de Riesthal, Ph.D., CCC-SLP is an Associate Professor in the Department of Hearing and Speech Sciences at Vanderbilt University Medical Center (VUMC), and Director of the Pi Beta Phi Rehabilitation Institute. Prior to returning to Vanderbilt University, he was a Senior Speech-Language Pathologist at the Department of Veterans Affairs Medical Center and an affiliate of the VA RR&D Brain Rehabilitation Research Center in Gainesville, FL.

Dr. de Riesthal’s clinical and research interests include the management of neurologic speech, language, and cognitive disorders. In addition to directing Pi Beta Phi Rehabilitation Institute, he is a founding member of the interdisciplinary traumatic brain injury clinic at VUMC and provides services in the interdisciplinary Huntington’s disease clinic. He teaches courses on the management of aphasia, motor speech disorders and traumatic brain injury, and mentors doctoral student research in these clinical areas. He has published papers and book chapters on the topics of traumatic brain injury, motor speech disorders, aphasia, and progressive language disorders, and has presented many scholarly papers in the area of neurologic communication disorders throughout the United States.




How to Cite

Shibata, K., Simpson, N., Reeder, J., Darby, R., & de Riesthal, M. (2024). Primary Progressive Aphasia and Non-Medical Factors Related to Health Outcomes: A Retrospective Study. Journal of Critical Study of Communication and Disability, 2(1), 32–45.