Navigating the diagnosis and treatment of primary progressive aphasia: Lived experience of a rural patient.

Frontotemporal dementias (FTD) are a group of early-onset neurodegenerative disorders that primarily affect the frontal and temporal lobes, leading to changes in behavior, motor abilities, communication, and executive functions. Primary progressive aphasias (PPA), the language variant of FTD, specifically impair speech and language abilities. The heterogeneous presentation of FTD, particularly PPA, complicates differential diagnosis and treatment selection for healthcare professionals. These challenges are further exacerbated for patients in rural areas due to limited access to specialized healthcare services. This cross-sectional, descriptive case study examines a 76-year-old male patient diagnosed with agrammatic primary progressive aphasia (nfvPPA) living in a rural area in the U.S. We conducted a semi-structured interview with his caregiver to explore the lived experience of being diagnosed and treated for PPA in a rural setting and to identify challenges encountered during the diagnostic and therapeutic processes. Several critical barriers were identified, including poor interprofessional communication, inadequate practitioner-patient and caregiver communication, limited access to educational resources, inconsistent intervention and follow-ups, and restricted healthcare services. To improve the patient and caregiver experience, we propose a collaborative management model centered around speech-language pathologists with expertise in FTD/PPA. This model aims to facilitate smoother navigation of the healthcare system and improve patient outcomes. Effective care management requires clear and continuous communication among providers, patients, caregivers, and other professionals. Additionally, educating and supporting FTD/PPA patients and their families is essential. Research gaps in rural areas regarding diagnosis and treatment outcomes further hinder care, underscoring the need for targeted studies to enhance clinical practices and improve the quality of life for both patients and caregivers.