Skip to main content

Summit Virtual Meeting Series: 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers

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

The goal of the summit, which was held as a virtual series on July 10, July 21, and August 13, 2020, was to bring together individuals with a variety of backgrounds to identify evidence-based programs, strategies, approaches, and other research that can be used to improve the care, services, and supports of persons with dementia and their caregivers.

About the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers

The National Institute on Aging (NIA), in conjunction with the Department of Health and Human Services as part of the National Alzheimer’s Project Act (NAPA), planned to host the second National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers on March 24-25, 2020. The in-person event was canceled per COVID-19 physical distancing guidance. In lieu of the in-person event, the NIA hosted a 2020 Dementia Care, Caregiving, and Services Research Summit Virtual Meeting Series on July 10, July 21, and August 13, 2020. This series included research presentations, panelist remarks, moderated discussion andQ&A, and a presentation on the draft research gaps and opportunities. These draft research gaps and opportunities, developed by the Summit Steering Committee with input from stakeholder groups and organized into six themes, are intended to identify important potential areas for future research in the fields of dementia care and caregiving.

The goal of the summit was to bring together individuals with a variety of backgrounds to identify evidence-based programs, strategies, approaches, and other Logo: Research Summit on Dementia Care, Building Evidence for Services and Supportsresearch that can be used to improve the care, services, and supports of persons with dementia and their caregivers. This summit will follow the example of previous Alzheimer’s Disease (AD) and Alzheimer’s Disease-Related Dementias (ADRD) summits organized primarily by the National Institute on Aging (NIA) and the National Institute on Neurological Disorders and Stroke (NINDS), respectively. Each summit provides an opportunity for individuals to share perspectives about critical scientific gaps and opportunities for research.

Steering Committee

Steering Committee Co-Chairs

  • Jennifer Wolff, Johns Hopkins University
  • David Reuben, University of California, Los Angeles

Steering Committee Members

  • María Aranda, University of Southern California
  • Susan Beane, Healthfirst
  • Malaz Boustani, Indiana University School of Medicine
  • Katie Brandt, Massachusetts General Hospital
  • Chris Callahan, Indiana University School of Medicine
  • Elena Fazio, National Institute on Aging
  • Lori Frank, RAND
  • Jason Karlawish, University of Pennsylvania
  • Ian Kremer, LEAD Coalition
  • Helen Lamont, Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services
  • Katie Maslow, Gerontological Society of America
  • Michael Monson, Centene Corporation
  • Vincent Mor, Brown University
  • Joanne Pike, Alzheimer’s Association
  • Melanie Schicker, Minnesota State University (Retired)
  • Robyn Stone, LeadingAge
  • Sheryl Zimmerman, University of North Carolina

Federal Sponsors

National Institute on Aging at the National Institutes of Health
Office of the Assistant Secretary for Planning and Evaluation, U. S. Department of Health and Human Services (HHS)

Back to top

Background

The National Institutes of Health (NIH) and other entities use large research Summits to engage with the research community and stakeholders to solicit perspectives on research gaps and opportunities relevant to cognitive aging and Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD). The Advisory Council on Alzheimer’s Research, Care, and Services for the National Alzheimer’s Project Act (NAPA) has set research implementation milestones for progress on many fronts, including research on effective disease-altering treatments, epidemiology, dementia care, and prevention. Summits have been organized to elicit input from wider communities of researchers, funders, and others working on AD/ADRD, now on a 3-year cycle for AD, ADRD, and dementia care, caregiving, and services.

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 2017 Summit Report (PDF, 740K) summarizes the structure of the 2017 Summit and the resulting research priorities organized by 12 major themes. This 2020 Summit expanded upon what was learned in the previous summit and spark new innovative ideas from those living with dementia, caregivers, researchers, providers, and advocacy communities.

NIA sought a broad range of input during the planning process for the 2020 Summit and to inform research directions. Efforts included:

  • Seeking input during the Summit planning process through a published Request for Information in the NIH Guide.
  • Convening a Summit Steering Committee led by co-chairs Jennifer Wolff (Johns Hopkins University) and David Reuben (University of California, Los Angeles) comprised of a range of academic researchers as well as other stakeholders, including a person living with dementia and a care partner.
  • Working with the HHS Office of the Assistant Secretary of Planning and Evaluation (ASPE) to gather and consider input from several Stakeholder Groups including persons with dementia, informal caregivers, service providers, workforce development, and payers. Stakeholder recommendations are now available on ASPE’s NAPA website.
  • Seeking input from federal partners.
  • Seeking input from the NAPA Advisory Council.
  • Providing opportunities during the Summit for audience participation and engagement.
  • Seeking input on the draft research gaps and opportunities through a second published Request for Information in the NIH Guide.

Resources

Back to top

Themes

Theme 1: Impact of Dementia

This theme includes issues related to heterogeneity and trends in the lived experience of dementia, including the clinical impact and trajectory for people living with dementia and their family caregivers across the range of etiologies; the economic impact of dementia for patients, caregivers, payers, public programs, and society; and the effects of dementia, including the impact of health disparities on diverse populations – for example by sex and gender, socioeconomic status, geography, race and ethnicity, language, education, living arrangements, including people living alone or without caregivers. View the Theme 1 Presentation Slides (PDF, 3.4M).

Theme 2: Long-Term Services and Supports in Home, Community, and Residential Care Settings for Persons with Dementia and their Caregivers

This theme includes issues related to the organization, financing, and delivery of long-term services and supports (LTSS) in the home and community and in residential settings, such as assisted living and nursing homes. Issues related to the formal care and provider workforce, services provided by community-based organizations, payment and financing, industry, and caregiver needs will be addressed. View the Theme 2 Presentation Slides (PDF, 4.1M).

Theme 3: Services and Supports in Medical Care Settings for Persons with Dementia

This theme includes issues related to the organization, financing, and delivery of medical care across the continuum of health care settings that serve individuals at risk for and living with dementia, including office and home, urgent care, emergency department, hospital inpatient, post-acute care (including skilled nursing facility and home health care), and hospice. Issues related to the care and provider workforce, payment and financing, and industry will be addressed. View the Theme 3 Presentation Slides (PDF, 1.6M).

Integration: The Present and Future of Integrated Long-Term and Medical Care

This session will address the integration of Themes 2 and 3, including innovations in the organization, financing, and delivery to support integration of medical care and LTSS across the range of settings in which persons with AD/ADRD and their caregivers live and receive care. View the Theme 2-3 Integration Presentation Slides (PDF, 3.5M).

Theme 4: Participation of Persons with Dementia and their Caregivers in Research

This theme will address participation in research. It will consider persons living with dementia and their family caregivers as research participants and as engaged research partners. Topics to be examined include the impact of activated patient communities on study design and outcomes, nomenclature, and strategies for recruitment and retention; optimizing collection of information from a range of sources including persons living with dementia and other informants, technology-based sources, and meta-data; considerations for returning genetic and biomarker information and other study data to participants; and talking about research and research results with persons living with dementia and their family caregivers. View the Theme 4 Presentation Slides (PDF, 1.1M).

Theme 5: Intervention Research, Dissemination, and Implementation

This theme will address methods to improve intervention research relating to dementia care and caregiving that targets individuals, dyads, or organizations and approaches to improve the implementation and dissemination of evidence-based interventions, including strategies to motivate systems change to promote adoption and sustainability. View the Theme 5 Presentation Slides (PDF, 20M).

Theme 6: Research Resources, Methods, and Data Infrastructure

This theme includes a focus on methods, data, and processes to facilitate cross-cutting, high-impact research including approaches to intervention research (including pragmatic trials) and observational studies to enable monitoring of progress toward achieving research implementation milestones. Issues include survey infrastructure, ethical frameworks, costs, access to data from electronic health records. View the Theme 6 Presentation Slides (PDF, 2.8M).

The Summit Virtual Meeting Series Program Book (PDF, 969K) includes the themes of the Summit, detailed agendas, speaker and Steering Committee member biographies, poster presentation abstracts, and more.

Cross-Cutting Themes

  1. Perspectives from persons with dementia and their caregivers
  2. Health disparities
  3. Ethics
  4. Technology
  5. Etiologies

Back to top

Agendas

Click here for agendas for all three virtual Summit sessions. A complete Summit Virtual Meeting Series Program Book (PDF, 969K) is also available.

Back to top

Registration

The events have passed and registration is now closed.

Back to top

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 on the draft research gaps and opportunities developed as part of the Summit. The period for collecting RFI input is now closed.

Back to top

Posters

View the original list of accepted Summit poster presentations here. The Live Twitter Poster Session was held on August 7, 2020. You can still find the Twitter posters and tweets from that day by searching for #DementiaCareSummit on Twitter.

Back to top

Meeting Materials and Recordings

Summit Virtual Meeting Series Session 1

The first virtual meeting, held July 10, 2020, covered the welcome, setting the stage, Impact of Dementia (Theme 1), and Participation of Persons with Dementia and their Caregivers in Research (Theme 4).

View the Virtual Meeting 1: Opening Slides (PDF, 3.9M) | Theme 1 Presentation Slides (PDF, 3.4M) | Theme 4 Presentation Slides (PDF, 1.1M)

Summit Virtual Meeting Series: Session 2

The second virtual meeting, held July 21, covered Long-Term Services and Supports in Home, Community, and Residential Care Settings for Persons with Dementia and their Caregivers (Theme 2), Services and Supports in Medical Care Settings for Persons with Dementia (Theme 3), and Integration: The Present and Future of Integrated Long-Term and Medical Care.

View the Virtual Meeting 2: Theme 2 Presentation Slides (PDF, 4.1M) | Theme 3 Presentation Slides (PDF, 1.6M) | Theme 2-3 Integration Presentation Slides (PDF, 3.5M)

Summit Virtual Meeting Series: Session 3

The third meeting in the Summit series, held August 13, 2020, covered Intervention Research, Implementation, and Dissemination (Theme 5), Research Resources, Methods, and Data Infrastructure (Theme 6), and Emerging Topics.

View the Virtual Meeting 3: Theme 5 Presentation Slides (PDF, 20M) | Theme 6 Presentation Slides (PDF, 2.8M) | Emerging Topics Slides (PDF, 10M)

Media Inquiries

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

Back to top