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The 2026 Dementia Care and Caregiving Research Summit built on progress of the previous Care Summits to review research progress, highlight innovative and promising research, and identify remaining unmet research needs with input from the research community, persons living with dementia (PLWD) and their care partners, those who provide healthcare or services and supports to persons living with dementia, and other interest holders. The Summit was held virtually on March 17-19, 2026.
2026 Dementia Care and Caregiving Research Summit Recordings and Report
Recordings from the 2026 Dementia Care & Caregiving Research Summit are now available on NIH Videocast:
The report summarizing the Summit is forthcoming.
About the Dementia Care and Caregiving Research Summit
The Dementia Care and Caregiving Research Summit, the Alzheimer’s Research Summits , and the Alzheimer’s Disease-Related Dementia Summits provide coordinated planning efforts that respond to the National Plan to Address Alzheimer’s Disease . Each Summit provides an opportunity for individuals to share perspectives about critical scientific gaps and opportunities that reflect critical scientific priorities for Alzheimer’s disease and Alzheimer’s disease related dementias (AD/ADRD) research. The Summits can inform updates to the NIH AD+ADRD Research Implementation Milestones that address the National Plan.
The first National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers was held on the NIH campus on October 16-17, 2017, the second care-focused Summit was held virtually in the summer of 2020, and the third care-focused Summit , now known as the Dementia Care and Caregiving Research Summit was held virtually on March 20-22, 2023.
2026 Care Summit Steering Committee
Summit & Steering Committee Co-Chairs
- Julie Bynum, MD, MPH, University of Michigan
- Joseph Gaugler, PhD, University of Minnesota
Steering Committee
- Karina Davidson, PhD, Northwell Health
- Fayron Epps, PhD, RN, UT Health San Antonio
- Lee Jennings, MD, MSHS, University of Oklahoma
- Jinkook Lee, PhD, University of Southern California
- Courtney Van Houtven, PhD, Duke University
Sessions
Session 1: Economic Impacts of Dementia: Focus on Dementia Care & Caregiving
Session Chair: Courtney Van Houtven
This session highlighted recent research progress on understanding the costs of dementia, lessons learned, the challenges people continue to face, and the research needed to address them. Topics included the intersection of health services research and care quality for persons living with dementia, as well as health services and economics research that provide the necessary data to inform payor coverage. This session considered the costs of dementia to both patients and care partners, health systems, payors, and society. Often hidden, the session considered the evidence on the economic consequences to family members of persons living with dementia, including those who provide unpaid care and support along the full spectrum of disease: at home and continuing in the nursing home setting, including what costs are likely missing in the data.
Session 2: The Role of Community in Dementia Care Research
Session Chair: Fayron Epps
This session focused on academic and community partnerships to advance dementia care research. In this session, researchers, community organizations, and families shared their experiences: a) co-designing or participating in dementia-focused studies/trials, b) implementing and disseminating evidence-based caregiving programs in the community, c) using technology to increase the accessibility of dementia care, and d) navigating care systems. Guest speakers shared their perspectives on the current research needs to improve the lives of persons living with dementia and their care partners.
Session 3: Rigorous Dementia Care & Caregiving Intervention Development
Session Chair: Karina Davidson
This session discussed the opportunities, challenges, lessons learned, and what is still needed for dementia care and caregiving intervention research, with the overarching goal to develop interventions that are maximally potent and efficacious, and maximally implementable in real-world settings. Topics focused on scientific methods, including the mechanisms and governing principles of dementia care intervention research across the NIH Stage Model (focused on Stages 3-5); the types of interventions that are demonstrating promise; and what is needed for successful adoption and implementation in health systems.
Session 4: Advances in AD/ADRD Data Infrastructure to Support Dementia Care & Caregiving Research
Session Chair: Jinkook Lee
This session emphasized scientific advances that have been made leveraging existing data infrastructure in dementia care and caregiving research and identified current gaps and future opportunities for the data infrastructure. Topics discussed include highlighting how data users are leveraging current infrastructure and what data is needed to move forward in their research, discussing the opportunity to advance dementia care and caregiving research, and identifying potential approaches to further innovate in building and analyzing data in home and community-based settings.
Session 5: Dementia Care Models and Care Coordination Strategies for Dementia Across Systems and States
Session Chair: Lee Jennings
This session focused on dementia care coordination research and how it informs the policy to practice pipeline. Topics will address what evidence is still needed for policymakers and payors to invest in care coordination and dementia care models.
2026 Dementia Care and Caregiving Research Summit Agenda
The
Day 1 Agenda – March 17, 2026
12:30 – 1:40 p.m. ET: Setting the Stage
- Welcome and Meeting Charge
- Drs. Joe Gaugler and Julie Bynum
- NIA Opening Remarks
- Dr. Richard Hodes
- Lived Experience Remarks
- Pat and Dave Krebs
- State of the Science: Dementia Care and Caregiving Research – NIA Updates
- Dr. Elena Fazio
1:40 – 1:50 p.m. ET: Break
1:50 – 3:40 p.m. ET: Session 1: Economic Impacts of Dementia: Focus on Dementia Care & Caregiving
- Introduction
- Dr. Courtney Van Houtven
- Fireside Chat: A Conversation on the Costs of Dementia to Persons Living with Dementia, Care Partners, Health Systems, Payors, and Society
- Moderator: Dr. Courtney Van Houtven
- Panelists: Drs. Jon Skinner, Norma Coe, Julie Zissimopoulos and Paige Lin
- Lived Experience Interview Panel
- Moderator: Dr. Sam Fazio
- Panelists: Dr. Brent Beasley, Cindy Beasley, Andrea Lucas, Leyda Paz
- Presentation of Gaps and Opportunities/Moderated Q&A
3:40 – 3:50 p.m. ET: Break
3:50 – 5:10 p.m. ET: Session 2: The Role of Community in Dementia Care Research
- Introduction
- Dr. Fayron Epps
- Scientific Presentations
- Adapting Caregiver Interventions for Responsiveness: Centering Community Knowledge & Values
- Dr. Lexie Jackson and Ms. Puni Kekauoha
- People Power: Advancing the Translational Potential of Dementia Research
- Dr. Sara Masoud and Dr. Howaida Werfelli
- From Evidence to Infrastructure: Leveraging Adult Day Services Partnerships to Support People Living With Dementia and Their Families
- Dr. Gina Green-Harris and Mr. Holland
- Community at the Core: Dementia Care Research with Purpose and Partnership
- Dr. Lauren Parker and Mr. Bill Zargorski
- Adapting Caregiver Interventions for Responsiveness: Centering Community Knowledge & Values
- Presentation of Gaps and Opportunities/Moderated Q&A
- Closing Remarks for Day 1
- Drs. Joe Gaugler and Julie Bynum
Day 2 Agenda – March 18, 2026
1:00 – 1:20 p.m. ET: Welcome and Lived Experience Remarks
- Welcome to Day 2
- Drs. Joe Gaugler and Julie Bynum
- Lived Experience Remarks
- Mr. Kevin Rhodes
1:20 – 2:45 p.m. ET: Session 3: Rigorous Dementia Care & Caregiving Intervention Development
- Introduction
- Dr. Karina Davidson
- Scientific Presentations
- Framing the Future: The NIH Stage Model and Advancing Dementia Care Interventions
- Dr. Melissa Riddle
- From the Front Lines: Leveraging Formal Caregiver Lived Experience for Intervention Development
- Ms. Kaitlin Tangredi
- From Trial to Translation: Building Implementation Ready Dementia Interventions through Rigorous Efficacy Testing
- Dr. Nancy Hodgson
- Bridging Efficacy to Everyday: Considerations in Scaling and Testing Interventions for Patients Living with Dementia and Their caregivers in Routine Settings
- Dr. Julie Lauffenburger
- Making a Policy Impact
- Dr. Jason Doctor
- Framing the Future: The NIH Stage Model and Advancing Dementia Care Interventions
- Moderated Panel Discussion with Presenters
- Presentation of Gaps and Opportunities/Moderated Q&A
2:45 – 2:55 p.m. ET: Break
2:55 – 5:10 p.m. ET: Session 4: Advances in AD/ADRD Data Infrastructure to Support Dementia Care & Caregiving Research
- Introduction
- Dr. Jinkook Lee
- Scientific Presentations
- Insight on AD/ADRD from the National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC)
- Dr. Jennifer Wolff
- Understanding the Daily Lives of Caregivers: The UAS-CLEAR Study
- Dr. Kira Birditt
- Linking Survey and Medicare Data: A Leap Forward in Dementia Research
- Dr. Kenneth Covinsky
- Opportunities for Longitudinal Interventions, Risks, and Outcomes Analyses with Real World Data (RWD)
- Dr. Christopher Chute
- LTC Data Cooperative: Clinical EHR Data from Skilled Nursing Facilities and Assisted Living Communities
- Ms. Stephanie Kissam
- Gateway to Global Aging Data: LTC Policy and Understanding the Care Journey
- Dr. Dave Knapp
- Using State Data Infrastructure to Improve Dementia Care – Initial Lessons from State Alzheimer's Research Support Center (StARS)
- Dr. Eric Jutkowitz
- Strategically Aligning Research Initiatives to Catalyze Real-World Change
- Dr. Amy Kind
- Insight on AD/ADRD from the National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC)
- Presentation of Gaps and Opportunities/Moderated Discussion with Presenters
- Audience Q&A
- Closing Remarks for Day 2
- Drs. Joe Gaugler and Julie Bynum
Day 3 Agenda – March 19, 2026
11:00 a.m. – 12:30 p.m. ET: Early Career Investigator Event
- Introduction
- Dr. Laura Major
- Training and Research Opportunities for Early to Midcareer Investigators
- Dr. Laura Major and Ms. Allison Walker
- Moderated Q&A with Audience
- Dementia Care & Caregiving Research Overview, Intervention Development, and Data Resources
- Dr. Melissa Riddle and Ms. Jessica Boten
- Moderated Q&A with Audience
- Closing Remarks
- Dr. Laura Major, Ms. Allison Walker, Dr. Melissa Riddle, and Ms Jessica Boten
1:00 – 2:50 p.m. ET: Session 5: Dementia Care Coordination Models and Strategies Across Systems and States
- Welcome to Day 3
- Drs. Joe Gaugler and Julie Bynum
- Lived Experience Remarks
- Ms. Tenny Tsai
- Introduction
- Dr. Lee Jennings
- Scientific Presentations
- Ideal Care Map: Overview of the Complexity of the Dementia Care Ecosystem
- Dr. Wen Dombrowski
- Progress in Early Detection of Dementia in Older Adults Across Care Settings
- Dr. Anna Chodos
- Home-based Clinical and Long-term Care for People Living with Dementia: Opportunities to Improve Coordination
- Dr. Jennifer Reckrey
- Updated on the GUIDE Model in Clinics and Communities
- Dr. Hillary Lum
- Dementia Care Navigation Implementation: Barriers, Facilitators, and Evidence Gaps
- Dr. Kristin Lees Haggarty
- Ideal Care Map: Overview of the Complexity of the Dementia Care Ecosystem
- Presentation of Gaps and Opportunities
- Dr. Lee Jennings
- Policy and Practice Perspectives Panel
- Ms. Wendy Fox-Grage
- Dr. Shari Ling
- Ms. Erin Long
- Moderated Q&A
- Closing Remarks
- Drs. Joe Gaugler and Julie Bynum
3:15 – 4:15 p.m. ET: Post-Care Summit Public Listening Session
- Introduction
- Drs. Elena Fazio, Julie Bynum, and Joe Gaugler
- Public Remarks
- Closing Remarks
- Drs. Elena Fazio, Julie Bynum, and Joe Gaugler
2026 Dementia Care and Caregiving Research Summit Early Career Investigator Event
In collaboration with the NIA Training Office, NIA staff hosted an Early Career Event to provide an overview of available training opportunities and resources for early to midcareer investigators, as well as a dementia care and caregiving research overview and data resources that investigators can leverage. There was a moderated discussion to address early career researchers' questions.
The Early Career Investigator Event was held virtually on March 19, 2026, from 11:00 a.m. - 12:30 p.m. ET.
2026 Dementia Care and Caregiving Research Summit Post-Care Summit Listening Session
NIA hosted a listening session to hear questions/comments on presentations that participants were not able to provide during the Summit or any additional input on the Research Gaps and Opportunities (G&Os) that participants wanted to share with Care Summit planners and NIA. We particularly encouraged those living with cognitive symptoms or dementia and care partners to join.
The Post-Summit Listening Session took place following the conclusion of Day 3 of the 2026 Dementia Care and Caregiving Research Summit on March 19, 2026, at 3:15 p.m. ET.
Contact Information
For general inquiries regarding the 2026 Dementia Care Summit, please contact NIADementiaCareSummit@mail.nih.gov .
Reasonable Accommodation: If you need reasonable accommodation to participate in this event, please contact the above organizers within 24 hours of registering, and no later than March 2.
Pre-Summit Listening Session
The National Institutes of Health’s National Institute on Aging (NIA) hosted a virtual Pre-Summit Listening Session on Wednesday, December 10, 2025, at 1:00 – 2:00 p.m. ET. Persons living with dementia, care partners, researchers, and interest holders shared their ideas for consideration at the 2026 Dementia Care and Caregiving Research Summit. We appreciate everyone’s input to inform the Care Summit.
