Gaps in clinical research in frontotemporal dementia: A call for diversity and disparities–focused research
Sanne Franzen, Karen Nuytemans, Renelle Bourdage, Paulo Caramelli, Ratnavalli Ellajosyula, Elizabeth Finger, Ignacio Illán‐Gala, Samantha M. Loi, Darby Morhardt, Yolande A.L. Pijnenburg, Katya Rascovsky, Monique Williams, Jennifer S. Yokoyama, Suvarna Alladi, Yavuz Ayhan, Iris Broce, Sheila Castro‐Suárez, Kristy Coleman, Leonardo Cruz de Souza, Penny A. Dacks, Sterre C.M. de Boer, Jessica de Leon, Shana Dodge, Stephanie M. Grasso, Veer Bala Gupta, Vivek Gupta, Nupur Ghoshal, Vidyulata Kamath, Fiona Kumfor, Jordi A. Matías‐Guiu, Pauline Narme, T. Rune Nielsen, Daniel Okhuevbie, Stefanie Danielle Piña‐Escudero, Ramiro Ruiz‐Garcia, Marta Scarioni, Andrea Slachevsky, Aida Suárez‐González, Boon Lead Tee, Elena Tsoy, Hülya Ulugut, Ganesh M. Babulal, Chiadi U. Onyike, for the ISTAART FTD PIA and ISTAART Diversity and Disparities PIA
Abstract
Frontotemporal dementia (FTD) is one of the leading causes of dementia before age 65 and often manifests as abnormal behavior (in behavioral variant FTD) or language impairment (in primary progressive aphasia). FTD's exact clinical presentation varies by culture, language, education, social norms, and other socioeconomic factors; current research and clinical practice, however, is mainly based on studies conducted in North America and Western Europe. Changes in diagnostic criteria and procedures as well as new or adapted cognitive tests are likely needed to take into consideration global diversity. This perspective paper by two professional interest areas of the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment examines how increasing global diversity impacts the clinical presentation, screening, assessment, and diagnosis of FTD and its treatment and care. It subsequently provides recommendations to address immediate needs to advance global FTD research and clinical practice.