Advisory Council April 2016 Meeting Presentation: Research Subcommittee Recommendations



Friday, April 29, 2016


2016 Research Subcommittee Recommendations

Ron Petersen

Research Subcommittee Members

  • Richard Hodes
  • Laura Gitlin
  • Angela Taylor
  • Harry Johns
  • Billy Dunn
  • Jane Tilly
  • Shari Ling
  • Joan Weiss
  • Ron Petersen

Recommendation 1

  • Continue to provide a robust, comprehensive, and transformative scientific roadmap for achieving the goal of preventing, effectively treating and providing effective care and services for Alzheimer’s disease and related disorders by 2025
    • Roadmap should include input from experts in the field through research summits on AD and AD-related dementias including a research summit on care and services
    • Recommendations from summits and the research community should be re-evaluated each year and translated into milestones
    • Include specific research milestones to:
      • Reduce racial/ethnic/socioeconomic disparities in Alzheimer's disease and related dementias
      • Make significant improvements in research recruitment rates and outreach among diverse populations
      • Re-evaluate priorities among AD and related dementias across all research areas
      • Include and prioritize specific milestones for populations at high risk for AD
      • Increased attention on person-centered outcomes, specifically research planning and the delivery of care and services

Recommendation 2

  • Increase annual federal research funding sufficient to meet the 2025 goal
    • Initial estimates of that level are $2 billion/yr. but may be more; would be applied to AD research intiatives spanning basic, translational, clinical, care and services.
    • Annual research funding target should be dynamically modified to approximate 1% of the cost of caring for persons with AD and related dementias.
    • Annual professional judgment budget should reflect science-driven funding needs for budget year to enable investigators to reach 2025 goal of the plan.

Recommendation 3

  • Develop research goals aimed at the establishment of evidence-based recommendations to improve delivery of care and services
    • Enhance methodologies to effectively engage persons with dementia and families in care decision making and planning
    • Develop and implement quality care measures across all settings that include person-centered outcomes
    • Identify and evaluate (non-drug) care strategies that reduce disease burden and delay disease progression and evaluate their costs and downstream effects

Recommendation 4

  • Standardization of terminology in dealing with cognitive and dementing disorders
    • Convene an integrated conference to develop consistent language for cognitive disorders among the scientists, care providers and public
    • Engage all stakeholders around these issues to reach a consensus for the benefit of persons with dementia, their family members and caregivers and the scientific and service communities

Recommendation 5

  • US Government should support global efforts to address issues of research, care and services as recommended in the National Plan
    • US public and private entities should acknowledge and scrutinize the work of the World Dementia Council
    • Promote continued collaborations on international research efforts

Return to

National Alzheimer's Project Act Home Page

Advisory Council on Alzheimer's Research, Care, and Services Page

Advisory Council on Alzheimer's Research, Care, and Services Meetings Page


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