{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,3]],"date-time":"2026-11-03T11:02:18Z","timestamp":1793703738219,"version":"4.5.1"},"reference-count":21,"publisher":"American Medical Association (AMA)","issue":"12","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JAMA Neurol"],"published-print":{"date-parts":[[2023,12,1]]},"abstract":"Importance<\/jats:title>Nomenclature in the field of neurodegenerative diseases presents a challenging problem. Inconsistent use of terms such as Alzheimer disease<\/jats:italic> and dementia<\/jats:italic> has compromised progress in clinical care, research, and development of therapeutics. Dementia-associated stigma further contributes to inconsistent and imprecise language. The result is a lack of clarity that produces confusion with patients and the general public and presents communication challenges among researchers. Therefore, the Advisory Council on Research, Care, and Services of the National Plan to Address Alzheimer\u2019s Disease authorized a committee to make recommendations for improvement.<\/jats:p><\/jats:sec>Objective<\/jats:title>To establish a systematic neurodegenerative disease framework for information collection and communication to standardize language usage for research, clinical, and public health purposes.<\/jats:p><\/jats:sec>Evidence Review<\/jats:title>The Dementia Nomenclature Initiative organized into 3 major stakeholder working groups: clinicians, researchers, and the public (including individuals living with dementia and family caregivers). To inform the work, the initiative completed a narrative literature review of dementia nomenclature evolution over the last century across the PubMed, CINAHL, PsycInfo, and Scopus databases (January 1, 2000, through July 31, 2020). Initiative working groups used the results as a foundation for understanding current challenges with dementia nomenclature and implications for research, clinical practice, and public understanding. The initiative obtained additional input via focus groups with individuals living with dementia and caregivers, with separate groups for race and ethnicity (American Indian or Alaska Native, Asian or Pacific Islander, Black or African American, Hispanic or Latino, and White) as an initial assessment of the meaning of dementia-related terms to these groups.<\/jats:p><\/jats:sec>Findings<\/jats:title>From working group deliberations, the literature review, and focus group input, the initiative developed a framework clearly separating the clinical syndromic presentation experienced by affected individuals from possible underlying pathophysiologies. In the framework, domains of clinical impairment, such as cognitive, behavioral, motor, and other neurologic features, are graded by level of impairment between none and severe. Next, biomarker information describes underlying disease processes, explains the syndrome, and identifies possible disease labels: Alzheimer disease, frontotemporal degeneration, dementia with Lewy bodies, or vascular cognitive impairment dementia.<\/jats:p><\/jats:sec>Conclusions and Relevance<\/jats:title>The Dementia Nomenclature Initiative established a framework to guide communication about cognitive impairment among older adults. Wider testing and refinement of the framework will subsequently improve the information used in communicating about cognitive impairment and the way in which the information is used in clinical, research, and public settings.<\/jats:p><\/jats:sec>","DOI":"10.1001\/jamaneurol.2023.3664","type":"journal-article","created":{"date-parts":[[2023,10,16]],"date-time":"2023-10-16T15:34:26Z","timestamp":1697470466000},"page":"1364","source":"Crossref","is-referenced-by-count":47,"title":["A New Framework for Dementia Nomenclature"],"prefix":"10.1001","volume":"80","author":[{"given":"Ronald C.","family":"Petersen","sequence":"first","affiliation":[{"name":"Department of Neurology, Alzheimer\u2019s Disease Research Center, Mayo Clinic, Rochester, Minnesota"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sandra","family":"Weintraub","sequence":"additional","affiliation":[{"name":"Feinberg School of Medicine, Northwestern University, Chicago, Illinois"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marwan","family":"Sabbagh","sequence":"additional","affiliation":[{"name":"Alzheimer\u2019s and Memory Disorders Program, Barrow Neurological Institute, Phoenix, Arizona"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jason","family":"Karlawish","sequence":"additional","affiliation":[{"name":"Penn Memory Center, Departments of Medicine, Medical Ethics, and Health Policy, and Neurology, University of Pennsylvania, Philadelphia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charles H.","family":"Adler","sequence":"additional","affiliation":[{"name":"Department of Neurology, Mayo Clinic College of Medicine, Mayo Clinic Arizona, Phoenix"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Peggye","family":"Dilworth-Anderson","sequence":"additional","affiliation":[{"name":"Gillings School of Global Public Health, University of North Carolina, Chapel Hill"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lori","family":"Frank","sequence":"additional","affiliation":[{"name":"New York Academy of Medicine, New York, New York"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cynthia","family":"Huling Hummel","sequence":"additional","affiliation":[{"name":"Advisory Council on Alzheimer\u2019s Research, Care, and Services, Washington, DC"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angela","family":"Taylor","sequence":"additional","affiliation":[{"name":"Strategic Partnerships, Lewy Body Dementia Association, Lilburn, Georgia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"Dementia Nomenclature Initiative","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"10","reference":[{"issue":"2","key":"nsc230002r1","first-page":"238","article-title":"Nomenclatures in medicine.","volume":"61","author":"Kennedy","year":"1973","journal-title":"Bull Med Libr Assoc"},{"issue":"23","key":"nsc230002r3","doi-asserted-by":"publisher","first-page":"2381","DOI":"10.1212\/WNL.0000000000004717","article-title":"Alzheimer\u2019s Disease-Related Dementias Summit 2016: national research priorities.","volume":"89","author":"Corriveau","year":"2017","journal-title":"Neurology"},{"issue":"22","key":"nsc230002r5","doi-asserted-by":"publisher","first-page":"1053","DOI":"10.1212\/WNL.0000000000007583","article-title":"A brief history of \u201cAlzheimer disease\u201d: multiple meanings separated by a common name.","volume":"92","author":"Knopman","year":"2019","journal-title":"Neurology"},{"issue":"9","key":"nsc230002r6","doi-asserted-by":"publisher","first-page":"395","DOI":"10.1212\/WNL.0000000000006088","article-title":"How early can we diagnose Alzheimer disease (and is it sufficient)? 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