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