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2023 National Research Summit on Care, Services, and Supports for Persons Living with Dementia and Their Care Partners/Caregivers

Human silhouettes with icons indicating health and caregiving "2023 National Research Summit on Care, Services, and Supports for Persons Living with Dementia and Their Care Partners/Caregivers"

Identifying Research Gaps and Opportunities to Improve the Care, Services, and Support of Persons with Dementia and Their Caregivers

The 2023 Dementia Care and Caregiving Research Summit will build on progress of the previous 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 stakeholders. The summit will be held virtually on March 20-22, 2023.

About the Dementia Care and Caregiving Research Summit

The National Research Summit on Care, Services, and Supports for Persons Living with Dementia and their Care Partners/Caregivers (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.

Steering Committee

Steering Committee Co-Chairs

Steering Committee Members

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Sessions

Session 1: What Matters Framework and Living Well With AD/ADRD

Session Co-Chairs: Antonia Bennett and Basil Eldadah

This session will include considerations of outcomes that matter most to persons living with dementia and their care partners (e.g., Jessen et al., 2022) and models for living well with dementia (e.g., UK national strategy, dementia friendly communities). Research presentations may consider lessons learned from international settings that can be applied to the U.S. context and implications for future research. The session can include international exemplars, approaches to measuring outcomes in care and caregiving research, data or other research infrastructure needs, and the importance of including positive outcome measures in research. Presenters include Siobhan Reilly, Sheila Molony, and Lee Jennings.

Session 2: Impact of Detection and Diagnosis on Individuals and Care Partners

Session Co-Chairs: Luis Medina and Luke Stoeckel

This session will address approaches to early and equitable detection of dementia as an entry point into dementia care and considers the social, economic, and institutional barriers to and facilitators of detection and diagnosis within care settings, including in primary care and in the context of the Medicare annual wellness visit. Research presentations may consider the impact of detection and diagnosis on individuals and families across diverse contexts and backgrounds. Presentations may also address issues of communicating a diagnosis and ethics of disclosure. Presenters include Raj Shah, Emmanuel Fulgence Drabo, and Ellen McCreedy.

Session 3: Dementia Care Models and Coordination of Care

Session Co-Chairs: Katherine Possin and Marcel Salive

Dementia care models and coordination of care are complex and involve a multilevel framework that includes individual and family, community, policy, and societal levels. Care is provided and received in a variety of health and community-based care settings with varying levels and types of resources at differing stages of disease, including end-of-life. This session will explore community- and health system-based dementia care model exemplars as well as the inherent challenges in developing and disseminating evidence-based models of integrated care in real-world settings to meet the diverse needs of persons living with dementia. Research presentations may address care models, transitions in care, considerations that operate across the continuum of care needs from diagnosis to end of life, and/or payment models that facilitate comprehensive, collaborative dementia care. Presenters include David Reuben, Eric Larson, and Ula Hwang.

Session 4: Disparities in Health Care Access, Utilization, and Quality

Session Co-Chairs: Chanee Fabius and Emerald Nguyen

This session will consider the policies, health care structures and practices, neighborhood, and social, and economic factors that impact health equity in care access, use, care transitions and quality of care. It may consider both health care services and specific medical treatment and management approaches. Research presentations may include notable changes in policy (e.g., telehealth) affecting care and consider priority research and infrastructure needs to address structural racism and other drivers of disparities among minoritized populations, including attention to indigenous populations and approaches to research. Presenters include Shekinah Fashaw-Walters, Norma Coe, and Jie Chen.

Session 5: Support for Care Partners and Caregivers

Session Co-Chairs: Ken Hepburn and Liz Necka

This session will explore caregiving needs, supports, and sources of strength and resilience, which can vary by culture, caregiving networks, stage of disease, and living situation (e.g., kinlessness, PLWD living alone). Topics may also include factors that facilitate or impede the uptake of caregiver-friendly policies and practices in healthcare and workplace settings. Presentations may address cultural considerations in appraisal of caregiving roles and supports at individual, familial, and system levels. Presentations highlighting innovative caregiver focused behavioral interventions should identify the targets and mechanisms of action of the intervention. Presenters include Courtney Van Houtven, Joe Gaugler, and Karen Roberto.

Session 6: Dementia Care Workforce

Session Co-Chairs: Joanne Spetz and Elena Fazio

This session will explore research innovations and challenges pertaining to the paid dementia care workforce across a range of settings, including clinical care, nursing homes, assisted living, and home- and community-based services settings. Findings relevant to the dementia care workforce from the 2022 NASEM consensus study report The National Imperative to Improve Nursing Home Quality and implications for future research as well as workforce needs to support innovations for PLWD and care partners in the community will be explored. Presenters include Jasmine Travers, Bianca Frogner, and Jennifer Reckrey.

Session 7: Economic Impacts, Implications, and Approaches

Session Co-Chairs: Pei-Jung Lin and Priscilla Novak

This session will discuss the economic impact of dementia on families and the health care system and opportunities to alleviate economic burden. Presentations will consider financial incentives in the health care system to improve dementia care coordination and patient outcomes and to reduce costs. They will also address novel approaches to measuring the value of innovations in dementia care and treatment, and the impact of dementia on health care and economic decision making. Presenters include Mireille Jacobson, Peter Neumann, and Duke Han.

Session 8: Approaches to Participatory Research and Diverse Recruitment and Retention in Dementia Care Research

Session Co-Chairs: Crystal M. Glover and Cerise Elliott

This session will explore a range of topics related to the practice of scientific inclusion in dementia care/caregiving research across diverse contexts and populations. Presentations will highlight participant-centered and community-based approaches to equitable study design with a focus on outreach, engagement, recruitment, and sustainability. Presenters will explore diversity within diversity as it pertains to addressing challenges and amplifying facilitators of equitable study design and emergent practices for promoting inclusion in the context of caregivers and care recipients that have been under-included in research. Presenters include Jordan Lewis, Fayron Epps, and Van Ta Park.

Plenary Talk: Challenges and Best Practices for Dissemination and Implementation of Interventions for Persons Living with Dementia and their Care Partners

Recent key reports (e.g., AHRQ systematic review and NASEM care interventions report) have noted that behavioral interventions for persons living with dementia and/or their caregivers for which research evidence demonstrates the integral components that drive behavior change and make the intervention successful are lacking. This can be a roadblock to building a cumulative science and widespread dissemination in practice. This plenary talk will highlight opportunities for improving the rigor, reproducibility, and dissemination potential of intervention research. The plenary presentation will be given by Linda Collins.

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Meeting Materials and Recordings

Day 1: March 20, 2023

The first day of the Dementia Care and Caregiving Research Summit covered the Welcome, Advances in NIA Dementia Care and Caregiving research, What Matters Framework and Living Well with AD/ADRD (Session 1), Impact of Detection and diagnosis on Individuals and Care Partners (Session 2), and the plenary talk on Challenges and Best Practices for Development and Evaluation of Interventions for Persons Living with Dementia and their Care Partners.

Day 2: March 21, 2023

The second day of the Dementia Care and Caregiving Research Summit covered Dementia Care Models and Coordination of Care (Session 3), Disparities in Health Care Access, Utilization, and Quality (Session 4), and Support for Care Partners and Caregivers (Session 5). There was also an Early Career Development Informational and Networking Event that provided an overview of NIA research and training resources with breakout sessions to engage and ask questions with NIA staff.

Day 3: March 22, 2023

The third day of the Dementia Care and Caregiving Research Summit covered the Dementia Care Workforce (Session 6); Economic Impacts, Implications, and Approaches (Session 7); and Approaches to Participatory Research and Diverse Recruitment and Retention in Dementia Care Research (Session 8). There was also a listening session that allowed participants to provide input and asking questions to NIA and the Summit planners.

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Agenda & Program

The 2023 Summit Program Book, with background, session themes, meeting agenda, speaker biographies, and information on the Lived Experience Panel and Stakeholder Engagement Panel, is now available.

Day 1: March 20, 2023

11:00 a.m. – 12:00 p.m. ET: Setting the Stage

12:00 p.m.- 1:05 p.m. ET: Session 1 | What Matters Framework and Living Well with AD/ADRD

Session Co-chairs: Antonia Bennett and Basil Eldadah

  • What matters to people living with dementia living at home? Developing outcomes and the evidence base when evaluating interventions, Siobhan Reilly
  • Observable Expressions of Positive and Negative Emotion: Affect-Balance, Sheila Molony
  • Personalized Health Outcome Measurement in Dementia Care and Services Research, Lee Jennings
  • Presentation Title TBD, Sheila Molony
  • Session 1 Research Gaps and Opportunities
  • Panelist Remarks, Sam Fazio, Emmanuelle Belanger, Jim Mangi
  • Moderated Q&A and Discussion

1:05 p.m.-1:45 p.m. ET: Lunch Break

1:45 p.m.-2:50 p.m. ET: Session 2 | Impact of Detection and Diagnosis on Individuals and Care Partners

Session Co-Chairs: Luis Medina and Luke Stoeckel

  • Risk Prediction of Alzheimer’s Disease and Related Dementias in Primary Care Settings, Raj Shah
  • Challenges to Equitable Identification of People Living with Dementia for Pragmatic Clinical Trials, Ellen McCreedy
  • Disparities and Challenges in Dementia Care after Diagnosis, Emmanuel Fulgence Drabo
  • Session 2 Research Gaps and Opportunities
  • Panelist Remarks, Nate Chin, Emily Largent, and Deborah Jobe
  • Moderated Q&A and Discussion

2:50 p.m. – 3:50 p.m. ET: Plenary Talk

Moderator: Lisa Onken

3:50 p.m. – 4:00 p.m. ET: Day 1 Closing Remarks

4:00 p.m. ET: Day 1 Adjourn

 

Day 2: March 21, 2023

11:00 a.m. – 11:20 a.m. ET: Welcome

11:20 a.m.- 12:25 p.m. ET: Session 3 | Dementia Care Models and Coordination of Care

Session Co-chairs: Katherine Possin and Marcel Salive

  • The NASEM Report: Rationale, Illustrative Findings and Expectations of a Way Forward, Eric Larson
  • The Vanguard of Comprehensive Dementia Care: Much Done, Much More to Do, David Reuben
  • Dementia in the Acute Setting: Expanding and Improving Care, Ula Hwang
  • Session 3 Research Gaps and Opportunities
  • Panelist Remarks, Carolyn Clevenger, Shari Ling, and Roberta Cruz
  • Moderated Q&A and Discussion

12:25 p.m.-1:00 p.m. ET: Lunch Break

1:00 p.m.-2:05 p.m. ET: Session 4 | Disparities in Health Care Access, Utilization, and Quality

Session Co-Chairs: Chanee Fabius and Emerald Nguyen

2:05 p.m. – 2:15 p.m. ET: Break

2:15 p.m. – 3:20 p.m. ET: Session 5 | Support for Care Partners and Caregivers

Session Co-Chairs: Ken Hepburn and Liz Necka

  • Informal Dementia Care: Context Matters, Karen Roberto
  • The Sooner the Better: Implementation Considerations When Initiating Intervention Development, Joseph Gaugler
  • Expanding Policy Supports to Promote Caregiver Resilience and Well-Being, Courtney Van Houtven
  • Session 5 Research Gaps and Opportunities
  • Panelist Remarks, Rita Choula, Cassandra Thomas, and Jason Resendez
  • Moderated Q&A and Discussion

3:20 p.m. – 3:30 p.m. ET: Day 2 Closing Remarks

3:30 p.m. ET: Day 2 Adjourn

 

Day 3: March 22, 2023

11:00 a.m. – 11:20 a.m. ET: Welcome

11:20 a.m.- 12:25 p.m. ET: Session 6 | Dementia Care Workforce

Session Co-chairs: Joanne Spetz and Elena Fazio

  • Setting the Stage: What We Know and Don’t Know About the Dementia Care Workforce, Bianca Frogner
  • Challenges for the Nursing Home Direct Care Workforce and the Way Forward, Jasmine Travers
  • The Direct Care Workforce in Home-Based Dementia Care: Opportunities to Improve Care, Jennifer Reckrey
  • Session 6 Research Gaps and Opportunities
  • Panelist Remarks, Dave Grabowski and Melissa Myers-Bristol
  • Moderated Q&A and Discussion

12:25 p.m.-1:00 p.m. ET: Lunch Break

1:00 p.m.-2:05 p.m. ET: Session 7 | Economic Impacts, Implications, and Approaches

Session Co-Chairs: Pei-Jung Lin and Priscilla Novak

  • Financial Decision Making, Cognitive Decline, and Alzheimer’s Disease, Duke Han
  • Health Care Utilization Before and After a Dementia Diagnosis in Medicare Advantage and Traditional Medicare, Mireille Jacobson
  • Costs and Cost-Effectiveness in Dementia Care, Peter Neumann
  • Session 7 Research Gaps and Opportunities
  • Panelist Remarks, Helen Lamont, Rachel Werner, and Darius Lakdawalla
  • Moderated Q&A and Discussion

2:05 p.m. – 2:20 p.m. ET: Break

2:20 p.m. – 3:25 p.m. ET: Session 8 | Approaches to Participatory Research and Diverse Recruitment and Retention in Dementia Care Research

Session Co-Chairs: Crystal Glover and Cerise Elliott

  • Unique Identity Challenges for the Recruitment of AI/AN caregivers into Dementia Care Research, Jordan Lewis
  • Insights to Engaging and Recruiting Vietnamese Americans in Dementia Caregiving Research, Van Ta Park
  • Community Relationships are Critical for the Recruitment of African American Families in Dementia Care Research, Fayron Epps
  • Session 8 Research Gaps and Opportunities
  • Panelist Remarks, Martha Williams, Christine Nguyen, and Robert Reid
  • Moderated Q&A and Discussion

3:25 p.m. – 3:45 p.m. ET: Summit Closing Remarks

3:45 p.m. ET: Summit Adjourn

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Listening Session

2023 Dementia Care and Caregiving Research Summit Listening Session

March 22, 2023 | 4:00 - 5:00 p.m. ET

If you have questions that you were not able to ask during the Summit or have input to share with Summit planners and NIA, please join us at 4:00 p.m. on March 22 for a post Summit listening session.  We look forward to hearing your questions and comments and ideas.  We particularly encourage those living with cognitive symptoms and care partners to join!  

Join us using Zoom

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Lived Experience & Stakeholder Panels

NIA convened a Lived Experience Panel to solicit feedback from individuals living with dementia and care partners/caregivers of persons living with dementia. Furthermore, the Stakeholder Engagement Panel provided input from a variety of formal dementia care and caregiving stakeholders, including direct care workers, health services providers, patient advocates, payer representatives, and researchers. The overarching purpose of each panel was to further a key goal of the Summit: to 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 stakeholders. Each panel participated in two 90-minute virtual feedback sessions. Read the Lived Experience Panel and Stakeholder Engagement Panel Summaries for more information.

Lived Experience Panel Members

Facilitators  
Gary Epstein-Lubow, Brown University
Monica Moreno, Alzheimer’s Association
 
Panelists 
Dave Arnold  
Willetha Barnette  
Leslie Burger  
Roberta Cruz  
LuPita Gutierrez-Parker  
Reda Harrison  
Priscilla Jean-Louis  
Deborah Jobe  
Jim Mangi  

Stakeholder Engagement Panel Members

Facilitator 
Heidi Gil, LiveWell; Stakeholder Engagement Team, NIA IMPACT Collaboratory

Stakeholders
Rajiv Ahuja, Milken Institute Center for the Future of Aging
Alicia I. Arbaje, Johns Hopkins University School of Medicine
Malaz A. Boustani, Richard M. Fairbanks Professor of Aging Research
Ian N. Kremer, LEAD Coalition (Leaders Engaged on Alzheimer’s Disease)
Dawn Lambert, Connecticut Department of Social Services
Melissa Myers-Bristol, Clayton County Senior Services Department
Jason Resendez, National Alliance for Caregiving
Petra Niles, Alzheimer’s Los Angeles
Susan Peschin, Alliance for Aging Research
Sarah Sjöström, Hebrew Rehabilitation Center, Dedham
Alicia Villegas, Alzheimer’s Los Angeles
 

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Request for Information

NIH published a Request for Information (RFI) to seek input from stakeholders representing various interested communities, including people living with dementia and care partners, researchers, health care providers, and advocacy organizations to inform planning of the 2023 Dementia Care and Caregiving Research Summit. The period for collecting RFI input is now closed.

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Media Inquiries

Media inquiries surrounding the Summit should be directed to the NIA Office of Communications and Public Liaison or call (301) 496-1752.

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nia.nih.gov

An official website of the National Institutes of Health