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

Generating Research Recommendations to Improve the Care, Services, and Support of Persons with Dementia and Their Caregivers

The goal of the Summit is 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. Registration is now open!

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

The goal of the Summit is 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 followed 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 produces research recommendations that reflect critical scientific priorities for research. The primary anticipated outcome of the 2020 summit is to elicit recommendations for research priorities to inform federal agencies, foundations, and private sector organizations.

Summit Dates

Tuesday, March 24 and Wednesday, March 25, 2020

Location

Natcher Conference Center, Building 45
Bethesda, Maryland
United States

If you are using a navigation system, the street address to the Gateway Visitor Center on campus is 9000 Rockville Pike, Bethesda, MD 20894.

Registration Dates

Mid-fall 2019 to Early March 2020

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

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)

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Background

The National Institutes of Health (NIH) and other entities use large research Summits to engage with the research community and stakeholders to generate research recommendations 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 recommendations organized by 12 major themes. This 2020 Summit, scheduled for March 24-25, 2020, aims to expand 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 recommendations. Efforts included:

  • Publishing a 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.
  • Seeking input from federal partners.
  • Seeking input from the NAPA Advisory Council.
  • Providing opportunities during the Summit for audience participation and engagement.

Resources

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Themes and Agenda

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.

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.

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.  

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.

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.

Theme 5: Intervention Research, Dissemination, and Implementation

This theme will address methods to improve research on interventions – including interventions targeting individuals, dyads, or organizations – and research on approaches to increase the implementation and dissemination of evidence-based interventions with sufficient fidelity in real-world settings to improve quality of care and quality of life for persons with dementia and their caregivers. Strategies to motivate systems change to adopt and implement evidence-based interventions will also be addressed.

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.

Cross-Cutting Themes

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

An agenda is forthcoming.

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Registration

Advance registration is required for all participants who plan to attend in person. Registration is encouraged but not required to watch the live videocast. Registration is free of charge for all participants.

Register

 

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Logistics

Reminder: Participants who are not part of the Steering Committee or an invited speaker are responsible for all their own travel, accommodations, and general logistics.

Meeting Location

The meeting will take place in the main auditorium of the Natcher Conference Center (Building 45) on the NIH main campus located in Bethesda, Maryland. Please review the Visitor Campus Map prior to your arrival.

Access to the NIH Main Campus and Meeting Location

Please allow adequate time to travel to the NIH main campus and to get through security. You need to bring a government-issued photo ID to obtain a visitor's badge and access campus.

All NIH visitors need to enter campus through the Gateway Visitor Center (Building 66) located next to the Medical Center Metro Station entrance on the Red Line and near visitor parking lot MLP-11. All persons and bags will be screened.

This map shows the key landmarks and their proximity to each other: the Metro, MLP-11 visitor parking, Gateway Visitor Center (Building 66) where you will be screened and obtain a badge, and the Natcher Conference Center (Building 45) Summit location. For more information about visiting the NIH main campus, please visit the NIH Visitor Information website.

Public Transit

The Washington, D.C. Metro transit system has a station on the Red Line at the visitor entrance of the NIH campus called Medical Center. Information about the Metro transit system, including fares, schedules, a trip planner, and estimated travel times from other stops can be found at the WMATA website. Use of public transportation to and from the Summit is highly encouraged.

Driving

Limited parking is available on campus for $12 per day in visitor parking lot MLP-11, but the use of public transportation is encouraged.

Internet Access

Wi-Fi is available on the NIH main campus. SSID "NIH-Guest-Network" is open and in broadcast mode in your available wireless networks. Select the network, open a browser (if it does not do so automatically), read the terms, and click Accept.

Nearby Hotels

Please contact hotels directly to make your own reservations unless you are a member of the Steering Committee or invited to speak at the Summit. The logistics contractor working with Summit organizers will contact supported travelers directly to arrange hotel and other travel accommodations.

There are many hotels in the Bethesda area. The following options are convenient to the NIH campus and/or nearby Metro stations. The NIH does not endorse particular brands or services and no special rates or room blocks have been negotiated for Summit attendees.

Hyatt Regency Bethesda
One Bethesda Metro Center
Bethesda, MD 20814
301-657-1234

Located at the Bethesda Metro Station on the Red Line.

Bethesdan Hotel
8120 Wisconsin Avenue
Bethesda MD 20814
301-652-2000

Located 0.6 miles from NIH campus.

Residence Inn Bethesda Downtown
7335 Wisconsin Avenue
Bethesda, MD 201814
301-718-0200

Located a 2-minute walk from the Bethesda Metro Station on the Red Line.

Hilton Garden Inn Washington DC/Bethesda
7301 Waverly Street
Bethesda, MD 20814
301-654-8111

Located a 2-minute walk from the Bethesda Metro Station on the Red Line.

Bethesda Marriott
5151 Pooks Hill Road
Bethesda, MD 20814
301-897-9400

Located 1.1 miles from NIH campus.

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Poster Submissions

The poster submission deadline has passed. Please email us about the 2020 Dementia Care Summit if you have any questions.

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Videocast

For those who are unable to attend the summit in person, the Summit will be videocast live on March 24-25, 2020. The video will be archived and available for viewing after the Summit.

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Contacts

Email us about the 2020 Dementia Care Summit if you have general questions about the 2020 Summit that are not answered on this website.

Steering Committee members, invited speakers, and any other supported participants will be contacted directly by a logistics coordinator.

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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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