Nahuel Magrath-Guimet, Florentina Morello-Garcia, Loana De Los Santos, Carolina Ardohain-Cristalli, Eugenia Tabernero, Hernán Chaves, Pablo Bagnati, Ricardo Francisco Allegri, Joaquin Migeot, Juliana Acosta-Uribe, Isabel Elaine Allen, David Aguillon, Jose Alberto Avila-Funes, Maria Isabel Behrens, Martin Bruno, Luis Ignacio Brusco, Nilton Custodio, Elisa de Paula França Resende, Claudia Duran Aniotz, Marilu Gorno-Tempini, Agustin Ibanez, Kenneth S Kosik, Marcelo Adrian Maito, Diana Matallana, Bruce Miller, Mike Nalls, Stefanie D Piña-Escudero, Kate Possin, Guido Rocatti, Hernando Santamaria-Garcia, Andrea Slachevsky, Ana Luisa Sosa, Leonel Takada, Jared W Taylor, Lina M Zapata-Restrepo, Jennifer S Yokoyama, Victor Valcour
Mean time to diagnosis was 3.33 years using T-Reported and 2.97 years using T-Criteria. Times were longest in behavioral variant frontotemporal dementia and primary progressive aphasia variants. Younger age at onset was associated with longer time to diagnosis. Genetic carriers showed earlier onset but similar time to diagnosis.
INTRODUCTION: Frontotemporal lobar degeneration (FTLD) often affects younger patients, making time to diagnosis especially consequential. Most evidence comes from high-income countries, with limited data from Latin America.
METHODS: We studied 415 individuals with FTLD-associated syndromes from 12 sites in six Latin American countries in the Multi-Partner Consortium to Expand Dementia Research in Latin America (ReDLat) cohort. Time to diagnosis was calculated using clinician-reported symptom onset (T-Reported) and criteria-based onset (T-Criteria). Associations with phenotype, social determinants of health, education, age at onset, sex, symptom presentation, and genetic status were examined.
RESULTS: Mean time to diagnosis was 3.33 years using T-Reported and 2.97 years using T-Criteria. Times were longest in behavioral variant frontotemporal dementia and primary progressive aphasia variants. Younger age at onset was associated with longer time to diagnosis. Genetic carriers showed earlier onset but similar time to diagnosis.
DISCUSSION: Time to diagnosis remains substantial, particularly in younger patients and canonical frontotemporal dementia phenotypes.
UNLABELLED: Mean time to diagnosis remains high across frontotemporal lobar degeneration (FTLD) syndromes.Diagnostic delay in FTLD in Latin America averages ≈3 years.Younger onset is linked to longer time to diagnosis.Canonical frontotemporal dementia phenotypes show the longest diagnostic delays.