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Advisory Council July 2017 Meeting Presentation: Care Summit Update

Friday, July 28, 2017

Printer Friendly Version in PDF Format (7 PDF pages)


Research Summit on Dementia Care -- Building Evidence for Services and Supports
Progress to Date

Laura N. Gitlin and Katie Maslow

OCTOBER 16-17, 2017

National Research Summit Goals

  • Identify what we know and what we need to know to accelerate development, evaluation, translation, implementation, and scaling up of comprehensive care, services, and supports for persons with dementia, families, and other caregivers
  • Focus on research needed to improve quality of person- and family centered care and outcomes including quality of life and outcomes across care settings, including quality of life and the lived experience of persons with dementia and their caregivers*

*The term 'caregivers' refers to family members, neighbors, friends, fictive kin, and formal, paid caregivers.

Potential Outcomes of the Summit

  • Research recommendations and priorities to inform Federal agencies, foundations, and private sector organizations that fund research on dementia care, services and supports.
  • Identification of evidence-based programs, strategies, and approaches that can be used now to improve care, services, and supports
  • Identification of methodologies to involve individuals with dementia and families in shaping research and participating in studies
  • Research milestones to track and guide acceleration and advancement of evidence-informed care and services
  • White papers, briefs, and publications summarizing Summit research recommendations and outcomes; possible post-summit activities to advance policy and practice implications

Organizational Structure

Working Organzational Chart

Steering Committee Members


  • Laura N. Gitlin, Ph.D.
  • Katie Maslow, MSW

Executive Committee

  • Ron Petersen MD, PhD (Mayo Clinic)
  • Rohini Khillan, MPH (ASPE, HHS)


  • Gary Epstein-Lubow, MD (Brown University)
  • Lori Frank, PhD (PCORI)
  • Richard Hodes MD (NIA)
  • Ian N. Kremer JD (LEAD)
  • Shari M. Ling, MD (CMS)
  • Sarah Lenz Lock JD (AARP)
  • Helen Matheny, MS (West Virginia University)
  • Lisa McGuire, PhD (CDC)
  • Jennifer Mead, MPH (Oregon Dept. of HS)
  • Linda O. Nichols, PhD. (VA Medical Center)
  • Douglas D. Pace, NHA (Alzheimer's Association)
  • Lonni Schicker, EdD, MHSA, RN, Co-chair, Persons Living with Dementia Stakeholder Group
  • Jane Tilly, DrPH (ACL)
  • Lois A. Tully, PhD. (NINR)
  • Teresa Webb, RN, Co-Chair, Persons Living with Dementia Stakeholder Group
  • Joan Weiss, PhD, RN (HRSA)

Summit Funding is Almost Complete

  • As of July 18, private sector sponsors had committed more than 90% of the FNIH goal; Sponsor names are shown on the FNIH website
  • Very substantial additional funding came from the U.S. Office of Women's Health
  • Federal government agencies and private sector organizations have provided additional funding and major in-kind support, including:
    • ASPE
    • Alzheimer's Association
    • National Institute on Aging
    • UsAgainst Alzheimer's
    • LEAD Coalition
    • Alliance for Aging Research
    • Gerontological Society of America
    • Others


Summit Agenda is Almost Complete

Day One

  • Welcome and Introduction: Summit Co-Chairs and Sponsors
  • Plenary Speakers --setting the stage
    • Ron Petersen, MD
    • Maria Carillo, Ph.D.
    • Ken Langa, MD, Ph.D.
    • Jennifer Manly, Ph.D.
    • Maria Aranda, Ph.D.
  • Session I: Research on Care Needs and Supportive Approaches for Persons with Dementia (Co-chairs: Richard Fortinsky, Ph.D., Ann Kolanowski, Ph.D.)
  • Session II: Research on Supportive Approaches for Family and Other Caregivers (Co-chairs: Linda Teri, Ph.D, Lisa Fredman, Ph.D.)
  • Session III: Involving Persons with Dementia and Caregivers as Members of the Research Team (Co-Chairs: Mark Snowden, MD, M.P.H, Lee Jennings, MD, M.S.H.S.)

Day Two

  • Plenary Session: Nomenclature: Words Matter: (Co-Chairs: Angela Taylor and Ron Peterson, MD, Ph.D)
  • Session IV: Involving Persons with Dementia as Study Participants (Co-chairs: Darby Morhardt, Ph.D., David Bass, Ph.D.)
  • Session V: Research on Care Coordination and Care Management for Persons with Dementia and Family Caregivers (Co-chairs: David Reuben, MD., Vincent Mor, Ph.D.)
  • Session VI: Thinking Outside the Box (Co-chairs: Chris Callahan, MD., Alan Stevens, Ph.D.)

Cross-Cutting Themes

  • Crosscutting Themes: Diversity (gender, race, ethnicity, culture, language, literacy, sexual orientation, socio-economic status, geographic location, and living situation [alone or with a caregiver]); Disparities; Etiologies and Disease Stages; Care Settings (home, community, assisted living, nursing home, and medical/health care settings); employment, training, and workforce issues; and technology.
  • Plenary Lectures will provide information about prevalence and the characteristics of persons with dementia, family caregivers and caregiving situations, emphasizing available data about diversity and other cross-cutting themes
  • Cross-cutting Chairs will review research recommendations for inclusion of cross-cutting themes
    • Technology -- Dr. Czaja;
    • Race/ethnicity/culture -- Dr. Hinton;
    • Etiologies/disease stage -- Angela Taylor;
    • Women's Issues -- Mary Worstell, M.P.H. and Jill Lesser

Research Recommendations

  • Research recommendations will come from many sources, including:
    • Session co-chairs and speakers
    • Plenary speakers
    • Cross-cutting chairs
    • Stakeholder groups
    • Pre-Summit activities
    • Public listening sessions
    • Audience members
  • All proposed recommendations, whether considered during summit presentations or not, will be kept and eventually placed on the summit website.

Roles of Persons Living with Dementia and Family Caregivers

  • Persons living with dementia and family caregivers have been participating in stakeholder groups that have been discussing summit-related issues and providing feedback about the summit.
  • At least 5 persons living with dementia will be speakers in the summit, and others will participate in other ways.
  • At least 4 family caregivers will participate in the summit, and others will participate in other ways.
  • By involving persons living with dementia and family caregivers throughout the planning and implementation of the summit, we are hoping to learn about their perspectives and to model valuable roles they can play in the research context

Next Steps

  • Registration -- free, open to the public
  • Support for Session Chairs and Speakers to develop their presentations and recommendations
  • Development/Implementation of a Communications Plan for before, during and after the summit
  • Logistics and arrangements for summit participants


July 28, 2017 -- Advisory Council Meeting #25

The meeting was held on Friday, January 26, 2018, in Washington, DC. The Research Subcommittee took charge of this meeting's theme, focusing on the process from targets to treatments. The Council heard speakers on the preclinical pipeline, the clinical trial pipeline, and the industry perspective. The meeting also included discussion of a driver diagram to guide the Council's future work, updates and a report from the October Care Summit, and federal workgroup updates. Material available from this meeting is listed below and is also available at

Comments and questions, or alerts to broken links, should be sent to


General Information


Presentation Slides



  • Welcome thru Clinical Care -- [Video]

  • LTSS Research -- [Video]

  • Public Comments thru Federal Workgroup Updates -- [Video]

  • Recommendations thru Adjourn -- [Video]