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Advisory Council October 2019 Meeting Presentation: National Plan 2019 Update

Monday, October 21, 2019

Friendly Version in PDF Format (6 PDF pages)


National Plan to Address Alzheimer’s Disease: 2019 Update

Helen Lamont, Ph.D.
Office of Disability, Aging, and Long-Term Care Policy


National Plan

  1. Prevent and Effectively Treat Alzheimer’s Disease by 2025
  2. Optimize Care Quality and Efficiency
  3. Expand Supports for People with Alzheimer’s Disease and Their Families
  4. Enhance Public Awareness and Engagement
  5. Track Progress and Drive Improvement


  • National Plan, not just a federal plan: Requires engagement of public and private sector stakeholders
  • Balance work on treatments with care needed by people with the disease and their families now
  • Progress report of completed and ongoing activities of the federal government and non-federal partners
  • Long term goals, strategies to achieve those goals, and immediate actions

Implementing the National Plan

  • Set Implementation Milestones Timeline
  • Identify lead agencies and partners
  • Implement many actions immediately
  • Report progress to Advisory Council
  • Update annually

2019 Update Development

  • Report on progress and updated activities between July 2018 and July 2019
  • Address recommendations Advisory Council adopted in July 2019
  • HHS agencies and federal partners identified both next steps to actions on National Plan and new areas of work
  • Most of the changes are updates and continuations

Goal 1: Prevent and Effectively Treat Alzheimer’s Disease by 2025

  • Three new actions from the Department of Defense
    • Action 1.A.8: Create and implement a strategic plan for the Congressionally Directed Medical Research Program’s Alzheimer’s research program
    • Action 1.A.9: Develop and administer a scientific landscape survey for the Congressional Directed Medical Research Program’s Alzheimer’s research program
    • Action 1.B.10: Expand research for care and support of individuals with cognitive and behavioral symptomatology related to both TBI and dementia
  • Two new actions from the Department of Veterans Affairs
    • Action 1.B.8: Convene a workshop on TBI and dementia
    • Action 1.B.9: Joint VA-NIA career development award

Highlights of Updated Activities

  • Expand clinical trial outreach
    • Action 1.B.3: In 2019, NIA launched Alzheimer’s and Dementia Outreach, Recruitment, and Engagement Resources (ADORE)
    • Action 1.B.4: NIA’s Alzheimer’s Clinical Trials Consortium (ACTC) network of 35 U.S. sites to develop and deploy best practices for recruiting and conducting clinical trials
  • Expand research on intersection of Down syndrome and ADRD
    • Action 1.B.7: 2018 NIH funded work to create a AD clinical trial network for adults with Down syndrome: The Alzheimer’s Clinical Trial Consortium - Down Syndrome Network (ACTC-DSN)
  • Facilitate translation of research into public health practice
    • Action 1.E.1: NIA AMP-AD public-private partnership now has a web-based interactive platform for sharing data to leverage analyses and discoveries
    • Action 1.E.7: CDC issue maps on caregiving, risk reduction, early detection, data for action, and education of health professionals

Goal 2: Enhance Care Quality and Efficiency

  • Fill gaps in dementia-capable systems
    • Action 2.A.13: Target activities to support persons living alone with ADRD, individuals aging with IDD, and behavioral symptom management for family caregivers
  • Encourage use of dementia care guidelines and measures
    • Action 2.D.1: CMS is working on developing and implementing quality and outcome measure for HCBS programs
  • Understand differences in reported diagnosis, Medicare claims, and cognitive assessment performance
    • Action 2.B.5: Examine the extent to which these methods identify different populations to identify priorities for improving diagnosis and surveillance
  • Explore payment and service options for duals
    • Action 2.E.4: Analyze new payment and service options for Medicare-Medicaid dual eligible beneficiaries
    • Action 2.G.3: Compare outcomes from dual eligible beneficiaries in integrated care models
    • Action 2.G.4: Analyze pathways of eligibility for dually eligible beneficiaries
  • Expand Health IT standards for care planning and interoperable information exchange between providers
    • Action 2.G.2: Assesses the adequacy of HIT standards to support people with ADRD

Goal 3: Expand Supports for People with AD and Their Families

  • Enhance access to evidence-based interventions for caregivers
    • Action 3.B.2: Provide effective caregiver interventions through Alzheimer’s disease and related dementias-capable systems
  • Explore options for supporting caregivers
    • Action 3.B.6: Examine technological solutions to support family caregivers
    • Action 3.B.8: Determine economic impacts of programs to support informal caregivers
  • Assist in planning for future care needs
    • Action 3.C.1: Understand the functional trajectories of people with Alzheimer’s disease and related dementias at the end of life
    • Action 3.C.2: Understand the use of advance care planning for people with cognitive impairment
    • Action 3.C.4: Understand the availability of caregivers for individuals with long-term services and supports needs
  • Keep people with dementia safe from neglect and exploitation
    • Action 3.D.5: Develop public-private partnerships to combat abuse and exploitation of Social Security beneficiaries
    • Action 3.D.8: Identify research and policy priorities for addressing self-neglect

Goal 4: Enhance Public Awareness and Engagement

  • Educate the public about Alzheimer’s disease and related dementia
    • Action 4.A.2: Facilitate translation of data and surveillance to inform the public
  • Coordinate internationally
    • Action 4.C.1: Work with global partners to enhance collaboration

Goal 5: Improve Data to Track Progress

  • Action 5.A.5: Summarize existing data on people with Alzheimer’s disease and related dementia and their caregivers
  • Action 5.A.6: Provide analysis of BRFSS data on people with Alzheimer’s disease and their caregivers in user-friendly formats
  • Action 5.B.3: Identify key indicators of progress on the National Plan