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Suggested Citation:"Appendix B: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
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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:
  • Receive study background and charge from the National Institute on Aging (NIA), discuss task with the sponsor, and determine scope of committee’s work.
  • Receive an overview of the Agency for Healthcare Research and Quality (AHRQ) process for systematic reviews.
  • Receive an update from the Evidence-based Practice Center (EPC) on progress to date and questions for the committee.
  • Clarify issues identified by the committee and seek answers to questions.
  • Discuss report audience.
Suggested Citation:"Appendix B: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×
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:
Marie A. Bernard,
Deputy Director
John Haaga, Director, Division of Behavioral and Social Research
Elena Fazio, Health Scientist Administrator, Division of Behavioral and Social Research
Melinda Kelley, Director, Office of Legislation, Policy, and International Activities

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
Mary Butler and Joseph Gaugler, Minnesota EPC

Suggested Citation:"Appendix B: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×
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
Mary Butler and Joseph Gaugler, Minnesota EPC

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
Suggested Citation:"Appendix B: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×

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
Joseph Gaugler, 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

Suggested Citation:"Appendix B: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×

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:
Lynn Feinberg,
AARP
Kathleen Kelly, Family Caregiving Alliance
Douglas Pace, Alzheimer’s Association

1:10 pm Discussion with Committee Members
1:30 pm Panel II: Perspectives from Care Systems and Payers

Moderated discussion with:
Patrick Courneya,
HealthPartners
David Gifford, American Health Care Association
Shari Ling, Centers for Medicare & Medicaid Services
Lewis Sandy, UnitedHealth Group

2:10 pm Discussion with Committee Members
2:30 pm Panel III: Perspectives from Implementation Science

Moderated discussion with:
Laura Gitlin,
Drexel University
Melissa Simon, Northwestern University

3:00 pm Discussion with Committee Members
3:20 pm Break
Suggested Citation:"Appendix B: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×

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
Suggested Citation:"Appendix B: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×

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
Karen Love, Dementia Action Alliance
Maria Martinez Israelite, care partner, Washington, DC
John Richard (JR) Pagan, living with dementia, Woodbridge, Virginia
Brian Van Buren, living with dementia, Charlotte, North Carolina
Geraldine Woolfolk, care partner, Oakland, California

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.-

Suggested Citation:"Appendix B: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×

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
Joseph Gaugler, Minnesota EPC

11:20 am Discussion with Committee Members
12:00 pm Adjourn Open Session
Suggested Citation:"Appendix B: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×
Page 187
Suggested Citation:"Appendix B: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×
Page 188
Suggested Citation:"Appendix B: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×
Page 189
Suggested Citation:"Appendix B: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×
Page 190
Suggested Citation:"Appendix B: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×
Page 191
Suggested Citation:"Appendix B: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×
Page 192
Suggested Citation:"Appendix B: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×
Page 193
Suggested Citation:"Appendix B: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×
Page 194
Next: Appendix C: Biographical Sketches of Committee Members and Staff »
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Millions of people are living with dementia in the United States and globally. To live well with dementia, people need care, services, and supports that reflect their values and preferences, build on their strengths and abilities, promote well-being, and address needs that evolve as cognitive impairment deepens.

Persons living with dementia co-manage their care with or rely on the support of a wide range of care partners and caregivers, including spouses, other family members and friends, and direct care workers in homes or residential care settings. While dementia care has improved since the 1970s, many individuals still lack access to high-quality care and are not living as well as they might. Disadvantaged groups, especially racial and ethnic minorities, still face challenges in access to care, services, and supports, due to deep and persistent inequities.

Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward examines the complex body of evidence on dementia care and informs decision making about which interventions are ready to be broadly disseminated and implemented. It also offers a blueprint to guide future research using rigorous, cutting-edge methods that are inclusive, equitable, and yield critical information for real-world implementation, toward the ultimate goal of better supporting persons living with dementia and their care partners and caregivers in living as well as possible.

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