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

STRUCTURE
MILESTONES
TIMELINE
RESOURCES

Structure

STEERING COMMITTEE
- 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

Sponsorship Opportunities Available

CONTACT:
Angela Taylor
ataylor@LBDA.org
814-826-4150