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

Sanne Franzen, Department of Neurology and Alzheimer Center, Erasmus MC University Medical Center, Rotterdam, the Netherlands.
Karen Nuytemans, John P. Hussman Institute for Human Genomics and Dr. John T. Macdonald Department of Human Genetics, University of Miami, Miller School of Medicine, Miami, Florida, USA.
Renelle Bourdage, Department of Neurology and Alzheimer Center, Erasmus MC University Medical Center, Rotterdam, the Netherlands.
Paulo Caramelli, Behavioral and Cognitive Neurology Research Group, Faculdade de Medicina, Universidade Federal de Minas Gerais, Belo Horizonte (MG), Brazil.
Ratnavalli Ellajosyula, Manipal Hospitals, Bangalore and Annasawmy Mudaliar Hospital, Bangalore, India.
Elizabeth Finger, Parkwood Institute Research, London, Ontario, Canada.
Ignacio Illán-Gala, Sant Pau Memory Unit, Department of Neurology, Hospital de la Santa Creu i Sant Pau, Biomedical Research Institute Sant Pau, Universitat Autònoma de Barcelona, Barcelona, Spain.
Samantha M. Loi, Neuropsychiatry, Royal Melbourne Hospital, Parkville, Victoria, Australia.
Darby Morhardt, Mesulam Center for Cognitive Neurology and Alzheimer's Disease and Department of Preventive Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Yolande Pijnenburg, Alzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, Amsterdam, the Netherlands.
Katya Rascovsky, Department of Neurology and Penn Frontotemporal Degeneration Center, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.
Monique M. Williams, St. Louis Oak Street Health, St. Louis, Missouri, USA.
Jennifer S. Yokoyama, Memory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, California, USA.
Suvarna Alladi, National Institute of Mental Health and Neurosciences, Bangalore, India.
Yavuz Ayhan, Faculty of Medicine, Department of Psychiatry, Hacettepe University, Ankara, Turkey.
Iris Broce, Memory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, California, USA.
Sheila Castro-Suarez, CBI en Demencias y Enfermedades Desmielinizantes del Sistema Nervioso, Instituto Nacional de Ciencias Neurológicas, Lima, Peru.
Kristy Coleman, Parkwood Institute Research, London, Ontario, Canada.
Leonardo Cruz de Souza, Department of Internal Medicine, Faculdade de Medicina, Universidade Federal de Minas Gerais, Belo Horizonte, Brazil.
Penny A. Dacks, The Association for Frontotemporal Degeneration, King of Prussia, Pennsylvania, USA.
Sterre C. de Boer, Alzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, Amsterdam, the Netherlands.
Jessica de Leon, Memory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, California, USA.
Shana Dodge, The Association for Frontotemporal Degeneration, King of Prussia, Pennsylvania, USA.
Stephanie Grasso, Speech, Language and Hearing Sciences, The University of Texas at Austin, Austin, Texas, USA.
Veer Gupta, IMPACT-The Institute for Mental and Physical Health and Clinical Translation, School of Medicine, Deakin University, Geelong, Victoria, Australia.
Vivek Gupta, Macquarie Medical School, Faculty of Medicine, Health and Human Sciences, Macquarie University, Sydney, New South Wales, Australia.
Nupur Ghoshal, Departments of Neurology and Psychiatry, Knight Alzheimer Disease Research Center, Washington University School of Medicine, St. Louis, Missouri, USA.
Vidyulata Kamath, Department of Psychiatry and Behavioral Sciences, The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Fiona Kumfor, Brain & Mind Centre and the School of Psychology, The University of Sydney, Sydney, New South Wales, Australia.
Jordi A. Matias-Guiu, Department of Neurology, Hospital Clinico San Carlos, San Carlos Institute for Health Research (IdiSSC), Universidad Complutense, Madrid, Spain.
Pauline Narme, Laboratoire Mémoire Cerveau et Cognition (UR 7536), Institut de Psychologie, Université Paris Cité, Boulogne-Billancourt, France.
T Rune Nielsen, Danish Dementia Research Center, Department of Neurology, Copenhagen University Hospital - Rigshospitalet, Copenhagen, Denmark.

Document Type

Journal Article

Publication Date

6-3-2023

Journal

Alzheimer's & dementia : the journal of the Alzheimer's Association

DOI

10.1002/alz.13129

Keywords

cultural diversity; diagnosis; ethnicity; frontotemporal dementia; language; literacy; neuropsychological tests; primary progressive aphasia

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.

Department

Clinical Research and Leadership

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