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 and support appropriate use of language throughout the field of dementia research. To further this effort, a work group of experts has developed an Inclusive Language Guide.
Gathering feedback on the Inclusive Language Guide
The Inclusive Language Guide was made available for a public comment period, when those with relevant knowledge, background or experiences were invited to give feedback. You can continue to access and read the first version of the Inclusive Language Guide (PDF).
The comment period is now closed and the document is in phase two of development. The work group is reviewing all input and will share an updated version of the guide. If you have any questions about the Inclusive Language Guide or its development, please contact Stephen Hall at [email protected].
Project background
Health and health care disparities directly influence risks, diagnosis and treatment of Alzheimer’s disease and related dementias. While many scientists and advocates share a common goal of health equity, we do not yet have a common language to effectively communicate our work. 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 AD/ADRD scientists and experts in health disparities research, the work group developed a draft 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).