Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward (2021)
Chapter: Appendix B: Public Meeting Agendas
APPENDIX B
PUBLIC MEETING AGENDAS
Open Sessions: November 12–13, 2018
DAY ONE—MONDAY, NOVEMBER 12
| 10:45 am | Welcome and Introductions
Eric Larson, Kaiser Permanente Washington Health Research Institute, Committee Chair |
| 10:50 am | Delivery of Study Charge and Initial Discussion Objectives:
|
| Delivery of Charge
Richard Hodes, Director, NIA (10 minutes) |
|
| Overview of AHRQ Process
Kim Wittenberg, Health Scientist Administrator, AHRQ (5 minutes, by webcast) |
|
| Overview of EPC Progress to Date and Areas for Committee Input
Mary Butler and Joseph Gaugler, Minnesota Evidence-based Practice Center (15 minutes) |
|
| Discussion About Committee Charge and Process (30 minutes)
Speakers above, plus additional discussants from NIA: |
|
| 11:50 am | Lunch |
| 12:45 pm | Key Themes from the 2017 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers
Laura Gitlin, Dean, College of Nursing and Health Professions, Drexel University |
| 1:00 pm | Perspective of a Person Living with Dementia
Mary Radnofsky, Dementia rights advocate |
| 1:15 pm | Discussion About the Systematic Review Key Questions and Scope Objective: Discussion among NIA, EPC, and the committee about the draft systematic review key questions and scope, and about the EPC’s questions for the committee. Richard Hodes, Marie A. Bernard, John Haaga, Elena Fazio, and Melinda Kelley, NIA |
| 3:00 pm | Public Comment Period Members of the public who register will have 3 minutes to comment on any topic related to the study charge. |
| 3:15 pm | Adjourn Day One Open Session |
DAY TWO—TUESDAY, NOVEMBER 13
| 10:00 am | Introductory Remarks
Eric Larson, Committee Chair |
| 10:05 am | Continued Discussion About the Systematic Review Key Questions and Scope Objective: Discuss any remaining issues, questions, or points of clarification related to the draft systematic review key questions and scope. Richard Hodes, Marie A. Bernard, John Haaga, Elena Fazio, and Melinda Kelley, NIA |
| 11:30 am | Adjourn Day Two Open Session |
Open Session: February 4, 2019
| 4:00 pm | Welcome and Opening Remarks
Eric Larson, Committee Chair |
| 4:05 pm | Overview of EPC Draft Protocol and Questions for the Committee
Mary Butler and Joseph Gaugler, Minnesota EPC |
| 4:15 pm | Discussion moderated by Eric Larson, Committee Chair |
| 6:00 pm | Adjourn |
Public Workshop: April 15, 2020
SESSION 1: INTRODUCTION, STUDY CHARGE, AND DRAFT SYSTEMATIC REVIEW
Session Objectives:
- Receive a briefing from the study sponsor on the committee’s charge.
- Receive an overview of the draft AHRQ/EPC systematic review.
- Discuss care interventions and outcomes that are of most interest to people living with dementia and their caregivers.
| 10:00 am | Welcome and Overview of Workshop Objectives
Eric Larson, Kaiser Permanente Washington Health Research Institute, Committee Chair |
| 10:10 am | Background and Overview of the Committee’s Charge
Richard Hodes, NIA |
| 10:25 am | Overview of the Draft AHRQ/EPC Systematic Review
Mary Butler, Minnesota EPC |
| 10:45 am | Discussion with Committee Members |
| 11:30 am | Perspectives from a Caregiver: What Care Interventions and Outcomes Are Most Important?
Janet Michel, family caregiver |
| 11:40 am | Discussion with Committee Members |
| 11:50 am | Lunch |
SESSION 2: PERSPECTIVES ON “READINESS FOR DISSEMINATION AND IMPLEMENTATION”
Session Objectives:
NIA has asked the National Academies committee to make recommendations regarding which care interventions for individuals with dementia and their caregivers are “ready for dissemination and implementation on a broad scale.” To explore this concept in the specific context of the draft AHRQ/EPC systematic review, this session will engage stakeholders and decision
makers from advocacy organizations, associations, foundations, care systems, and implementation science to:
- Discuss what “ready for dissemination and implementation on a broad scale” means. How should this be assessed? What kinds of evidence do different stakeholders and decision makers look for?
- Provide input on the AHRQ/EPC draft systematic review.
| 12:30 pm | Session Objectives
Jason Karlawish, University of Pennsylvania, committee member and session moderator |
| 12:35 pm | Panel 1: Perspectives from Advocacy Organizations and Associations
Moderated discussion with: |
| 1:10 pm | Discussion with Committee Members |
| 1:30 pm | Panel II: Perspectives from Care Systems and Payers
Moderated discussion with: |
| 2:10 pm | Discussion with Committee Members |
| 2:30 pm | Panel III: Perspectives from Implementation Science
Moderated discussion with: |
| 3:00 pm | Discussion with Committee Members |
| 3:20 pm | Break |
SESSION 3: STATE OF THE EVIDENCE AND METHODOLOGICAL CONSIDERATIONS
Session Objectives:
- Continue to reflect on the draft AHRQ/EPC systematic review results, explore the current state of evidence, and discuss which care interventions for individuals with dementia and their caregivers may be ready for dissemination and implementation on a broad scale.
- Particular focus will be given to racial, ethnic, cultural, language, and socioeconomic considerations, across all aspects of the systematic review results.
- Discuss emerging data on care interventions that did not meet the evidentiary standard of the systematic review and data expected from studies under way that were not published in time for inclusion in the systematic review, and identify gaps and areas for future research.
| 3:30 pm | Session Objectives
XinQi Dong, Rutgers University, committee member and session moderator |
| 3:35 pm | Interventions for People with Dementia
Linda Teri, University of Washington |
| 3:45 pm | Interventions for Caregivers and Care Delivery Interventions
Richard Schulz, University of Pittsburgh |
| 3:55 pm | Cultural Modifications
J. Neil Henderson, University of Minnesota |
| 4:05 pm | Methodological Considerations and Treatment of Non-RCT Data
Jennifer Weuve, Boston University |
| 4:15 pm | Discussion Among Speakers and Committee Members |
| 4:50 pm | Closing Remarks
Eric Larson, Committee Chair |
| 5:00 pm | Public Session Adjourns |
Open Session: May 29, 2020
Open session objective: A group of people living with dementia and caregivers will provide perspectives on the draft AHRQ/EPC systematic review and input into the National Academies committee’s report.
Discussion questions:
- What would you like the National Academies committee to consider in drafting its report?
- The draft AHRQ/EPC systematic review identified two interventions as supported by low strength evidence (see background information below):
- How important to you are the outcomes targeted by these two interventions?
- Based on the brief descriptions below, would you be inclined to seek out these two interventions, and would you welcome them if they were offered to you?
| 2:30 pm | Welcome
Eric Larson, Committee Chair |
| 2:35 pm | Opening Remarks on the Questions Above (~3 minutes each)
Cynthia Huling Hummel, living with dementia, Elmira, New York |
| 3:00 pm | Discussion with Committee Members |
| 3:15 pm | Adjourn Open Session |
Open Session: September 16, 2020
Open meeting objective: Receive an overview from the Minnesota EPC about changes from the draft to the final AHRQ systematic review.-
| 11:00 am | Welcome and Meeting Objectives
Eric Larson, Kaiser Permanente Washington Health Research Institute, Committee Chair |
| 11:05 am | Overview of Changes from the Draft to the Final AHRQ Systematic Review
Mary Butler, Minnesota EPC |
| 11:20 am | Discussion with Committee Members |
| 12:00 pm | Adjourn Open Session |
