Gaps in clinical research in frontotemporal dementia: A call for diversity and disparities–focused research

Sanne Franzen*, Karen Nuytemans, for the ISTAART FTD PIA and ISTAART Diversity and Disparities PIA, Renelle Bourdage, Paulo Caramelli, Ratnavalli Ellajosyula, Elizabeth Finger, Ignacio Illán-Gala, Samantha M. Loi, Darby Morhardt, Yolande Pijnenburg, Katya Rascovsky, Monique M. Williams, Jennifer S. Yokoyama, Suvarna Alladi, Yavuz Ayhan, Iris Broce, Sheila Castro-Suarez, Kristy Coleman, Leonardo Cruz de SouzaPenny A. Dacks, Sterre C.M. de Boer, Jessica de Leon, Shana Dodge, Stephanie Grasso, Veer Gupta, Vivek Gupta, Nupur Ghoshal, Vidyulata Kamath, Fiona Kumfor, Jordi A. Matias-Guiu, Pauline Narme, T. Rune Nielsen, Daniel Okhuevbie, Stefanie D. Piña-Escudero, Ramiro Ruiz Garcia, Marta Scarioni, Andrea Slachevsky, Aida Suarez-Gonzalez, Boon Lead Tee, Elena Tsoy, Hülya Ulugut, Ganesh M. Babulal, Chiadi U. Onyike

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

5 Citations (Scopus)
45 Downloads (Pure)


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.

Original languageEnglish
Pages (from-to)5817-5836
Number of pages20
JournalAlzheimer's and Dementia
Issue number12
Early online date3 Jun 2023
Publication statusPublished - Dec 2023

Bibliographical note

Funding information: ZonMW, Grant/Award Number: 73305095007; Health Holland, Topsector Life Sciences & Health, Grant/Award Number: LSHM20106; GBHI, Alzheimer’s Association, and Alzheimer’s Society, Grant/Award Numbers: UK-21-720973, AACSF-21-850193; Instituto de Salud Carlos III, Grant/Award Numbers: JR20/0018, PI21/00791; NIH-NIA, Grant/Award Numbers: R01 AG062588, R01 AG057234, P30 AG062422, R01AG068183, R01AG056466, R01AG067428, R01AG074302; NIH-NINDS, Grant/Award Number: U54 NS123985; Rainwater Charitable Foundation; Global Brain Health Institute; Mary Oakley Foundation; NIDCD, Grant/Award Number: K23 DC018021; National Health and Medical Research Council Career Development Fellowship, Grant/Award Number: GNT1158762; ANID/FONDAP/ID15150012; ANID/FONDEF/ID22I10251; ANID/Fondecyt Regular/1210195 & 1191726; ANID/PIA/Anillos, Grant/Award Number: ACT210096; National Institutes of Health, National Institutes of Aging, Grant/Award Number: R01 AG057234; Alzheimer’s Association, Grant/Award Number: SG-20-725707; Tau Consortium; Alzheimer’s Association GBHI ALZ, Grant/Award Number: UK-20-639295; UKRI Healthy Ageing Challenge Catalyst Award, Grant/Award Number: ES/W006405/1; National Institute for Health Research, Grant/Award Numbers: COV-LT2-0014, ES/S010467/1; Economic and Social Research Council (UK); Alzheimer’s Association Clinician Scientist Fellowship (AACSF), Grant/Award Number: AACSF-22-849085; BrightFocus Foundation, Grant/Award Number: A2021142S

Publisher Copyright:
© 2023 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.


Dive into the research topics of 'Gaps in clinical research in frontotemporal dementia: A call for diversity and disparities–focused research'. Together they form a unique fingerprint.

Cite this