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Advisory Council July 2020 Meeting Presentation: Dementia Nomenclature Initiative

Monday, July 20, 2020

Printer Friendly Version in PDF Format (6 PDF pages)


Dementia Nomenclature Initiative(DeNomI)


Introduction: Today’s Terms are Confusing

  • Researchers and clinicians use different terms in different ways, e.g.
    • Alzheimer’s disease
      • E.g. syndrome or etiology?
    • DSM-5
      • Mild and major neurocognitive disorder
  • For the general public
    • Stigma from the term dementia
    • Dementia = Alzheimer’s disease?
    • Finding services and supports
  • Changing terms could have implications for healthcare reimbursement, regulatory decisions, training and more.

Building Momentum for Change

  • 2016 ADRD Summit
  • 2017 Care and Services Summit
  • Recurring Recommendations by Advisory Council
  • 2019 ADRD Summit: Process Rec’s on Dementia Nomenclature

Dementia Nomenclature Initiative

"A cross-cutting stakeholder discussion on barriers, opportunities and strategies to develop consistent, accurate, and meaningful language for cognitive impairment and dementia, that is useable or at minimum interoperable among scientists, care providers and the public."

Today’s DeNoml Update



    • Strategy, Deliverables, Funding, Workshops
  • Co-chairs:
    • Ronald C. Petersen, MD, PhD, Mayo Clinic
    • Angela Taylor, Lewy Body Dementia Association
  • Members:
    • Charles Adler, ME, PhD, Mayo Clinic
    • Peggye Dillworth- Anderson, PhD, University of North Carolina
    • Cynthia Huling-Hummel, Dmin, person living with dementia
    • Jason Karlawish, MD, University of Pennsylvania
    • Marwan Sabbagh, MD, Cleveland Clinic
    • Sandra Weintraub, PhD, Northwestern University

Working Groups

  • Research
    • Sandy Weintraub, Northwestern (chair)
    • Brian Appleby, Case Western
    • Lisa Barnes, Rush U.
    • Michael Belleville, PwD
    • Maria Carillo, Alz. Assoc.
    • Rod Corriveau, NINDS
    • Sharon Denny, AFTD
    • Brad Dickerson, Harvard
    • Elena Fazio, NIA
    • Elizabeth Gould, RTI Int’l
    • Dave Knopman, Mayo Clinic
    • Oscar Lopez, University of Pittsburgh
    • Lisa McGuire, CDC
    • Julie Schneider, Rush U.
    • Dom Sisti, U of Pennsylvania
  • Clinical Care
    • Marwan Sabbagh, Cleveland Clinic (chair)
    • Cindy Cordell, Global Alz. Platform
    • Judit Illes, Geron. Society of America
    • Eran Klein, Oregon Health & Science U
    • Jim Leverenz, Cleveland Clinic
    • Darby Morhardt, Northwestern
    • Darina Petrovsky, U of Pennsylvania
    • Maria Reyez, Salt Lake City VA
    • Luke Stoekel, NIA
    • Eric Tangalos, Mayo Clinic (ret’d)
  • Public Stakeholders
    • Jason Karlawish, Upenn, (chair)
    • Angela Arnott, Livonia Senior Center
    • Rodney Blough, PwD
    • Sam Crowe, caregiver
    • Christian Elliott, My Brain Test
    • Cara Fallon, U of Pennsylvania
    • Matt Janicki, U of IL at Chicago
    • Sara Locke, AARP
    • Jason Resendez, Latinos Against Alz
    • Matt Sharp, AFTD

RAND Corporation

  • Facilitate communication and coordinate meetings for the Steering Committee and Working Groups
  • Data collection, information synthesis, report preparation
  • Meeting planning
  • Summarize results in final project report
  • Disseminate results

Early Milestones

  • 2019
    • Steering Committee
    • Strategy and timeline
    • Working Groups (3)
  • 2020
    • Research Working Group
    • Budget and Sponsorships
    • RAND Corporation

More Milestones

  • 2020: RAND, Working Groups
  • Early 2021: Virtual meeting with NIH
  • Late 2021: In-person workshop
  • 2022: ADRD Summit


  • AARP
  • Lewy Body Dementia Association
  • Alzheimer's Association
  • Association for Frontotemporal Degeneration
  • Bluefield Project

Sponsorship Opportunities Available

Angela Taylor