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Advisory Council January 2019 Meeting Presentation: Care Interventions

Monday, January 28, 2019

Printer Friendly Version in PDF Format (6 PDF pages)


Care Interventions for Individuals with Dementia and Their Caregivers: Reviewing the Evidence

Melinda Kelley, Ph.D.
Director, Office of Legislation, Policy, and International Activities
National Institute on Aging


  • October 2017: Research Summit on Dementia Care -- Building Evidence for Services and Supports
  • Yielded 58 main recommendations for care/caregiving
  • NIA will be following up on research-related recommendations
  • Research on care/caregiving in the Alzheimer's and related dementias field is expanding.
  • Some programs to improve care and caregiving are already being disseminated and adapted (e.g., REACH).
  • A rigorous, independent review of which care/caregiving-related interventions are effective and ready for widespread dissemination is needed.
  • Overall goal of this project:
    • Take stock of the current state of knowledge and inform decision making about which care interventions for individuals with dementia and their caregivers are ready for dissemination and implementation on a broad scale.

A Collaborative Effort

  • Agency for Healthcare Research and Quality Evidence-based Practice Centers: Systematic Evidence Review
  • National Academies Expert Committee: Development of Recommendations
  • NIA: Next steps

How will the recommendations inform the government's next steps?

  • NIA's own communications about dementia care/caregiving
  • NIA's future research initiative planning
  • NIA's collaborations with other federal agencies
  • Examples of relevant CDC HBI Road Map actions:
    • E-7: Improve access to and use of evidence-informed interventions, services, and supports for people with dementia and their caregivers to enhance their health, well-being, and independence.
    • P-1: Promote the use of effective interventions and best practices to protect brain health, address cognitive impairment, and help meet the needs of caregivers for people with dementia.

Why engage two independent organizations?

  • AHRQ offers a highly-refined systematic evidence review process that has been trusted by governmental organizations for its comprehensiveness and independence.
  • The NAM offers an external, independent committee that can consider:
    • The EPC's findings on our current state of knowledge;
    • The EPC's findings in a larger context (of ongoing research, etc.); and
    • Whether observational studies, expert opinion, and other evidence considered in the review are strong enough to justify specific research priorities, even if not yet enough to justify dissemination & implementation on a broad scale.
  • The NAM also has well-established conflict of interest guidelines that will enable experts in the field to participate on the committee, without compromising its objectivity.

Areas of Focus

  • Alzheimer's plus FTD, LBD, and vascular cognitive impairment/dementia
  • Non-pharmacological approaches
  • Outcomes for individuals living with these dementias and outcomes for caregivers -- including health, quality of life, and utilization of healthcare services
  • Paid and unpaid caregivers
  • Multiple diverse settings

Opportunities for Broad Input

  • Input from multiple federal agencies received on:
    • NAM committee expertise
    • NAM committee nominations
    • The EPC's preliminary topic refinement plan
  • Input from the public received on the topic refinement plan
  • All National Academies meetings have a public (open) session

Anticipated Timeline: Phase I

Timeline: February 4, 2019 4-6pm ET, NASEM committee mtg: protocol discussion; February 2019-February 2020, AHRQ/EPC conducts evidence review; March 2020, Release of draft evidence report findings from AHRQ; To access the February 4 NASEM meng: contact Phoenix Wilson; March 24-25, 2020, Second Research Summit on Dementia Care.