There is an urgent need to advance Alzheimer’s disease and related dementia (AD/ADRD) research and reduce health disparities among underrepresented, disproportionately affected and understudied populations. In parallel with scientific and training programs that support diversity, equity and inclusion, the Alzheimer’s Association recognizes the need for recommendations that can guide inclusive communication practices throughout the field of dementia research. To further this effort, a work group of experts has developed the Alzheimer’s Association’s Inclusive Language Guide (PDF).
Health and health care disparities shape disease risk/resilience, diagnosis, treatment and experiences with Alzheimer’s disease and related dementias (AD/ADRD). While many scientists and advocates share a common goal of health equity, we often lack a shared language to effectively communicate about these differences and the individuals and groups they affect. To address this need, the Alzheimer's Association convened a work group of experts to provide recommendations on inclusive terminology. Work group members represent diverse disciplines including epidemiology, neurology, neurosciences, geriatrics, neuropsychology, public health, occupational therapy, and nursing — with focused expertise in health disparities and health equity research.
With input and critical feedback from the broader AD/ADRD scientific community, health disparities research and aging experts, and AD/ADRD patient and advocacy organizations, the work group developed and refined the Alzheimer’s Association Inclusive Language Guide. This document outlines minimum standards and guidance for labeling and communicating about social identities, characteristics of individuals and populations, and health disparities. The language guide addresses various domains including race/ethnicity, geographic/environmental factors, sex/gender identity and expression, and sexual orientation identity. Because of the complex and rapidly evolving nature of this field, these recommendations are flexible and will undergo regular review and revision.
Overview of topics
The Inclusive Language Guide includes the following topic areas:
- Communication standards for describing racial and ethnic identity.
- Suggested approaches to communicating about health disparities in inclusive and non-discriminatory ways.
- Recommendations for collecting information about racial/ethnic identity and communicating about how this information is collected and managed.
- Considerations for communicating with community members about social identities and health disparities.
- Language and communication surrounding situational or contextual descriptors or disparities, including geographic region, disadvantage, deprivation, socioeconomic status, and socioeconomic context.
- Considerations specific to diverse global contexts and settings that may modify meaning or approach to communication style or standards.
View the full Inclusive Language Guide (PDF).
Work group members
Andrea Gilmore-Bykovskyi, Ph.D., R.N.
BerbeeWalsh Department of Emergency Medicine, School of Medicine & Public Health, University of Wisconsin-Madison
Megan Zuelsdorff, Ph.D.
School of Nursing, University of Wisconsin-Madison
Jennifer Manly, Ph.D., MPH
Department of Neurology, Columbia University Irving Medical Center
Shana Stites, Psy.D., M.A., M.S.
Department of Psychiatry, University of Pennsylvania
Jason Flatt, Ph.D.
School of Public Health, University of Nevada, Las Vegas
Catherine García, Ph.D.
Department of Human Development and Family Science, Syracuse University
Ganesh Babulal, Ph.D., O.T.D.
Department of Neurology, Washington University in St. Louis School of Medicine
Kathleen Hayden, Ph.D.
Social Sciences and Health Policy, Wake Forest University School of Medicine
William Hu, Ph.D., M.D.
Department of Neurology, Rutgers Biomedical and Health Sciences
Lauren W. Yowelunh McLester-Davis, Ph.D.
Tulane Brain Institute, Tulane University
Ethan Cicero, Ph.D., RN
Nell Hodgson Woodruff School of Nursing, Emory University
Luis Medina, Ph.D.
Department of Psychology, University of Houston
We would like to thank the following individuals for their review of this guideline which served to provide important peer review and input on the Inclusive Language Guide. While these individuals provided feedback, they were not asked to endorse or approve the draft language guide.
Bryan D. James, Ph.D.
Associate Professor Rush Alzheimer’s Disease Center, Rush University Medical Center
Fred Ketchum, M.D., Ph.D.
Assistant Professor, Department of Neurology, School of Medicine & Public Health, University of Wisconsin-Madison
Gilbert C. Gee, Ph.D.
Professor and Chair, Department of Community Health Sciences Fielding School of Public Health, UCLA
Amy Kind, M.D., Ph.D.
Professor and Associate Dean for Social Health Sciences and Programs School of Medicine & Public Health, University of Wisconsin Madison
Joel G. Anderson, Ph.D., C.H.T.P., F.G.S.A.
Associate Professor University of Tennessee-Knoxville
Jennifer Weuve, MPH, Sc.D.
Associate Professor of Epidemiology Boston University School of Public Health
Lisa L. Barnes, Ph.D.
Alla V. and Solomon Jesmer Professor of Gerontology and Geriatric Medicine Rush Alzheimer’s Disease Center, Rush University Medical Center
Maria Glymour, Sc.D.
Professor, Department of Epidemiology and Biostatistics University of California, San Francisco
We would also like to thank staff who provided review and formatting support:
Kayla Dillon, B.A.; Dalton Lee, B.S.; Laura Block, B.S., B.S.N., R.N.; Meghan Haas, M.S.W.
Department of Emergency Medicine, University of Wisconsin-Madison School of Medicine & Public Health