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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 was built 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 was 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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Reports and Recordings

The Summit Report provides a scientific summary of each session and shares the finalized 2023 Research Gaps and Opportunities.

Read the final Summit report (PDF, 858K).

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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Research Gaps and Opportunities

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

G&O 1.1: Create core outcome measure sets that effectively evaluate outcomes of central importance to diverse persons living with dementia and their care partners that are standardized methods and harmonizable across studies.

  • Ensure suitability for clinical trials and allow for progression and type of dementia. Research should identify the extent to which core outcome measure sets need to vary by dementia type, stage of life (e.g., working age vs. retired), or other major characteristics.
  • Facilitate collaborative research among investigators worldwide involved in person-centered measurement and evaluation.

G&O 1.2: Develop and refine approaches to measuring meaningful outcomes for persons living with dementia and their care partners.

  • Consider such important aspects as well-being, affect, positive/negative emotions experienced or exhibited by persons living with dementia, meaningfulness, a sense of purposefulness, and safety.
  • Understand the potential differences in values, priorities, and measurement considerations for meaningful outcomes between individuals’ living with dementia and their care partner(s).
  • Incorporate strategies for validating self-reported and/or observer-reported instruments, for defining thresholds for meaningful and clinically significant improvement and maintenance of outcomes in the context of disease progression.

G&O 1.3: Develop and refine approaches for individual goal setting and assessment of goal attainment that are suitable for use in dementia care and caregiving research, including pragmatic trials. This includes developing instruments/toolkits and processes for clinical implementation.

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

G&O 2.1: Conduct NIH Stage I and II Model for Behavioral Intervention Development research in diverse populations, geographic settings, and environments of care to understand desirability, feasibility, and accessibility of early detection tools for dementia risk and the impacts on health decisions.

G&O 2.2: Curate representative, real-world primary care and population-based data resources to accelerate research on the development and approval of fair and equitable detection and National Summit on Dementia Care and Caregiving Research risk stratification tools for dementia and to elucidate the mechanisms driving disparities in diagnosis, diagnosis timing, and post-diagnosis care; and improve equity in care.

G&O 2.3: Conduct research to determine data sufficiency and algorithmic fairness considerations across dementia screening and detection tools that engage routine health related data to promote equitable validation, use, and adoption of these tools in real world settings. 

Session 3: Dementia Care Models and Coordination of Care

G&O 3.1: Develop and evaluate care management models that integrate medical and psychosocial approaches, starting at the point of acute and post-acute treatment settings such as in emergency department, urgent care, inpatient, and post-acute settings, and extending across the care continuum.

  • Conduct research to address and evaluate the models’ impacts on avoidable emergency department visits and revisits, hospitalizations, and care transitions.

G&O 3.2: Expand, adapt, and evaluate care management models that merge medical and psychosocial approaches to care for different patient populations across varied locales and health systems such as underrepresented minority groups, rural and urban locales, large health systems and small practices, different disease types, and patients with minimal caregiver support.

G&O 3.3: Enhance the effectiveness and implementation of care management models by evaluating key components using innovative research designs. Interventions should be optimized for outcomes important to people living with dementia and caregivers, and by parameters of interest to health systems and payers, including but not limited to program cost, dosage, setting, and staffing models.

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

G&O 4.1: Identify and implement strategies to expand data availability and linkages between data sources at local, state, and federal levels—as well as across health care settings in and out of traditional health systems.

  • Develop methods to improve data interoperability and integration or health information exchange across different health care settings, including care settings outside health systems, such as adult day centers or federally qualified health centers, as well as informal care settings.
  • Ensure that data enhancement strategies facilitate the investigation of social determinants of health and increase representation of vulnerable and underrepresented populations to enable examination of disparities in dementia care access and quality.

G&O 4.2: Examine how health information technology affects care access, quality, and costs for people living with dementia and caregivers for populations disproportionately affected and underrepresented in research.

  • Identify and describe the factors driving disparities in health information technology accessibility, availability, and utilization—including the importance of user-friendly design of patient portals to engage patients and caregivers and telemedicine to monitor post-discharge care coordination—as they relate to disease and disability prevention, treatment, and care management.
  • Examine variabilities in health information technology access and develop strategies to address disparities in accessibility and use across different settings, including traditional community, residential care, and nursing home sites.

G&O 4.3: Research how health care policies and payment models differentially affect access and quality of care received by people living with dementia in community and residential settings to guide interventions.

  • Analyze how the use of medical care, long-term services and supports, as well as care quality, are impacted by Medicare, Medicaid, and other health insurance models such as private long-term-care coverage. Also examine the effects on provider performance and the pathways to accessing care.

Session 5: Support for Care Partners and Caregivers

G&O 5.1: Develop and evaluate new methods while gauging and refining existing techniques that enable health systems to improve equitable identification of caregivers for provision of supports and services as well as enhance care-focused interventions.

G&O 5.2: Conduct culturally informed research on caregivers’ physical, emotional, and financial well-being and the provision of caregiving supports and services.

G&O 5.3: Build robust evidence about how systems-level policies and practices at the local, state, and national levels impact caregivers’ resilience, health, overall well-being (including financial security), and inequities in access to supports and services.

  • Examine the impacts on caregivers across sectors including but not limited to public health, health systems, and commercial and corporate entities — especially in terms of the differential effects of policies based on caregivers’ race, socio-economic status, place, and health literacy.
  • Conduct research that comprehensively and equitably identifies and includes caregivers in studies aimed at evaluating and/or enhancing their capabilities (including individual capacity and that enabled by policy) within intersecting socio-cultural, organizational, and policy-enabled contexts so their efforts are understood and supported and the care they provide is improved.

Session 6: Dementia Care Workforce

G&O 6.1: Develop data systems that support tracking of workforce education, training, diversity, experience, skills, staffing levels, service to diverse communities, and satisfaction. In addition, identify data linkages to support research on the relationship between the workforce and person-centered outcomes for people living with dementia and their care partners.

  • Incorporate workforce information into datasets related to the care of people living with dementia, even when the dataset is not primarily focused on the workforce.
  • Include information about the direct care workforce in all dataset development to support research that reflects the roles of and contributions of the dementia workforce.

G&O 6.2: Identify and evaluate interventions and strategies to advance and equitably support all members of the dementia workforce — in every professional level and care setting — to support the replication and dissemination of the most successful approaches. 

  • Include interventions that consider unpaid caregivers and those working outside of regulated agencies in caregiving positions.

G&O 6.3: Develop measures and research methods to understand the interactions within caregiving teams that include direct care workers and care partners.

  • Analyze how the relationships within caregiving teams impact quality of care and outcomes of people living with dementia.
  • Conduct research on best approaches for advancing equitable person-centered care and on best approaches for supporting high-quality dementia workforce jobs.

Session 7: Economic Impacts, Implications, and Approaches

G&O 7.1: Examine the relationships among dementia, health insurance, and health care decision making across the disease continuum.

  • Analyze how dementia influences health care plan choices between traditional Medicare and Medicare Advantage, as well as across Medicare Advantage plans.
  • Assess how different insurance models influence access to care, dementia diagnosis, disease management, and end-of-life care.

G&O 7.2: Examine the relationship between dementia and financial decision making among persons living with dementia and their families across the lifespan.

  • Develop, test, and refine technologies to better predict the course of the disease and improve financial and medical decision making.
  • Analyze how social determinants of health impact how patients and families pay for care across disease stages, how their retirement savings plans change due to dementia, and the health and financial implications for caregivers in the post-caregiving phase.

G&O 7.3: Expand research to characterize the value of diagnostic and prognostic information.

  • Analyze how persons living with dementia and their families make decisions about new treatments, including but not limited to how much they are willing to pay, what side effects and risks they are willing to tolerate, and how they make financial tradeoffs with other care and support services.
  • Assess the value of diagnostic innovations and economic implications of blood-based biomarkers.

Session 8: Approaches to Participatory Research and Diverse Recruitment and Retention

G&O 8.1: Conduct research that advances our understanding of culturally, linguistically, and demographically diverse conceptualizations and operationalizations of caregiving and caregiverrelated identities.

  • Analyze the impact of culturally acceptable and culturally responsive nomenclature on research question development, study design, and sampling, as well as on caregiver engagement, recruitment, and retention.

G&O 8.2: Examine the influence of study design and methodological approaches on engagement, recruitment, and retention in ADRD care and caregiving research.

  • Determine strategies to facilitate equitable study sampling and representative recruitment and retention of understudied caregiving populations, including but not limited to, diverse racial and ethnic groups, male-identified caregivers, those who identify as LGBTQIA+, and those in rural and dense micropolitan areas.
  • Assess the use of diverse methodologies such as qualitative, mixed methods, and design thinking approaches in the toolkit of rigorous and acceptable study designs for advancing equitable care and caregiving research.

G&O 8.3: Conduct research to understand factors such as culturally relevant and individually driven beliefs, values, and practices that shape diverse lived experiences across the care continuum.

  • Assess care continuum that includes end of life and the post-caregiving period after the person living with dementia has passed away.
  • Analyze the impact of the post-caregiving period on caregiver health and quality of life, including physical health, mental health, and socioeconomic factors.

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