Frank, Lori

ImportanceNomenclature in the field of neurodegenerative diseases presents a challenging problem. Inconsistent use of terms such as Alzheimer disease and dementia 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’s Disease authorized a committee to make recommendations for improvement.ObjectiveTo establish a systematic neurodegenerative disease framework for information collection and communication to standardize language usage for research, clinical, and public health purposes.Evidence ReviewThe 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.FindingsFrom 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.Conclusions and RelevanceThe 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.

Abstract Background The National Institute on Aging, in conjunction with the Department of Health and Human Services as part of the National Alzheimer's Project Act, convened a 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers . This review article addresses research participation by persons living with dementia (PLWD) and their care partners in two different ways: as research participants with input on outcomes studied and as engaged research partners. Results This article summarizes each of the topics presented at this Summit session, followed by reflection from the session panelists. Lee Jennings examined collection of outcomes directly from PLWD and the potential for individualized outcomes to enhance measurement in intervention trials. Ron Petersen discussed the impact of nomenclature on research and clinical care, and how and why investigators should be mindful of the connection between dementia nomenclature and the conduct of dementia research. Tabassum Majid examined strategies for engagement in research, including specific examples of involving PLWD and their care partners (including staff in assisted living and skilled nursing facilities), and the potential for this research engagement to improve our understanding of interventions in dementia. Conclusions Research participation by PLWD and their care partners is evolving. This review summarizes three areas of opportunity and steps for researchers to work with PLWD and their care partners to design and conduct research that enhances knowledge based on what we learn from PLWD and their care partners, and creates knowledge with them.