A New Framework for Dementia Nomenclature.

Area of Science:

• Neuroscience
• Medical Terminology
• Public Health

Background:

• Inconsistent nomenclature for neurodegenerative diseases like Alzheimer disease and dementia hinders clinical care, research, and therapeutic development.
• Dementia-associated stigma exacerbates imprecise language, causing confusion among patients, the public, and researchers.
• The National Plan to Address Alzheimer's Disease initiated efforts to improve nomenclature standards.

Approach:

• The Dementia Nomenclature Initiative convened stakeholder working groups (clinicians, researchers, public) and conducted a comprehensive literature review (2000-2020).
• Focus groups with individuals living with dementia and diverse ethnic caregivers provided input on the meaning of dementia-related terms.
• A narrative literature review examined nomenclature evolution over the past century across major databases.

Key Points:

• A novel framework was developed, distinguishing clinical presentation (domains of impairment) from underlying pathophysiology.
• Clinical impairment is graded (none to severe) across cognitive, behavioral, motor, and other neurologic features.
• Biomarker information is used to explain the syndrome and identify potential disease labels (e.g., Alzheimer disease, frontotemporal degeneration).

Conclusions:

• The Dementia Nomenclature Initiative established a framework to standardize communication regarding cognitive impairment in older adults.
• Further testing and refinement of this framework are essential for improving information use in clinical, research, and public health settings.
• This initiative aims to enhance clarity and reduce confusion in dementia-related terminology.