The Dementia Nomenclature Initiative, a committee of the Advisory Council on Research, Care, and Services of the National Plan to Address Alzheimer’s Disease, has developed a new framework to address inconsistent terminology used for neurodegenerative diseases. The framework aims to improve communication among clinicians, researchers, and the public.

The initiative reviewed dementia literature published over the last century to determine the current challenges and implications of inconsistent dementia nomenclature. Input from focus groups, including people living with dementia and their caregivers, provided additional recommendations across different racial and ethnic communities.

The new framework proposed by the investigators separates the clinical presentation of dementia (cognitive, behavioral/psychiatric, motor, and other neurological symptoms) from the possible underlying pathophysiologies determined by available biomarkers (amyloid, tau, a-synuclein, TDP-43, and vascular features). This information can then be used to identify disease labels: Alzheimer disease (AD), frontotemporal degeneration (FTD), dementia with Lewy bodies (DLB), or vascular cognitive impairment dementia (VCID).

The initiative's next steps include testing the framework in practice, refining it based on feedback, and developing strategies for widespread dissemination.

Source:Petersen RC, Weintraub S, Sabbagh M, et al.; for the Dementia Nomenclature Initiative. A new framework for dementia nomenclature. JAMA Neurol. 2023;80(12):1364–1370. doi:10.1001/jamaneurol.2023.3664