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Advisory Council April 2016 Meeting Presentation: National Research Summit

Friday, April 29, 2016


National Research Summit on Care and Services for Persons with Dementia, Family Members, and Caregivers

Steering Committee Members

  • Co-chairs
    • Laura N. Gitlin
    • Katie Maslow
  • Committee members
    • Gary Epstein-Lubow
    • Richard Hodes
    • Ian Kremer
    • Shari Ling
    • Helen Matheny
    • Jennifer Mead
    • Sarah Lock
    • Jane Tilly
    • Joan Weiss

Summit Goal

To accelerate the development, evaluation, translation, implementation and scaling up of strategies to improve quality of care and outcomes across settings, including quality of life and the lived experience of persons with dementia, family members, and caregivers.

Cross-cutting Themes

  • Diversity
    • all care settings including home, community, hospital, ALF, NH
    • Culture including race/ethnicity
    • Socioeconomic status
    • Health Literacy
  • Disparities
  • Etiologies and disease stages

Expected Outcomes

  • Identification of gaps in research on dementia care and services, including knowledge needs to support scaling up and widespread implementation of effective care strategies
  • Identification of novel methodologies for engaging persons with dementia and family members and measuring person-centered outcomes
  • Recommended priorities for government and private sector funding for research on care and services for persons with dementia and their families
  • Recommended, evidence-based strategies for use by health and human service providers and organizations/agencies to improve delivery of dementia care and services
  • Identification of effective implementation strategies for moving proven dementia care and services from research to practice settings

Pre-Summit Activities

  • Scientific meetings conducted prior to Research Summit
  • Purpose:
    • Provide foundational knowledge
    • Offer specific recommendations to be presented and/or discussed at Summit
    • Provide working documents (white papers)
    • Leverage and link existing scientific activity relevant to Research Summit on Care and Services

Next Steps

  • Co-chairs meet weekly
    • Report out at each FACA meeting
  • Steering Committee meets every 6 weeks
    • Next meeting will examine format and potential topics
    • Small working groups will be formed to work on:
      • Logistics
      • Process for involving national/international stakeholders
      • Finance/fund raising
    • Identify specific deliverables of Summit
  • Solidify pre-summit activities (criteria for and expected outcomes)