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Advisory Council July 2014 Meeting Presentation: 2014 National Plan and Family Support

Monday, July 21, 2014

The 2014 National Alzheimer's Plan and Supports for Families

Jane Tilly, DrPH

Family Supports

  • Speakers at the Advisory Council's quarterly meetings emphasize the needs that families have as they help their loved ones cope with dementia.
  • Family means anyone the person with dementia chooses to consider family.
  • We reviewed the 2014 Plan related to action steps designed to support families.
  • Concern and attention to unpaid caregivers infuses every area of the National Plan.
  • Concern and attention to unpaid caregivers cuts across all agencies and is part of all their collaborations.

Goal 1. Prevention and Treatment

  • ADEAR centers educate the public about management of dementia.
  • AHRQ is reviewing the effectiveness of behavioral management strategies.
  • Both action steps naturally involve family, as does the search for a cure or treatment to slow the disease.

Goal 2. Care Quality and Efficiency

  • HRSA and ACL are training workers and unpaid caregivers.
  • HHS is creating a clearing house for practice recommendations, which includes an emphasis on unpaid caregivers.
  • CDC's Healthy Brain Initiative has a focus on unpaid care partners.
  • ACL is using grants to promote dementia capable HCBS that incorporate services for unpaid caregivers.
  • ACL is making information about unpaid caregiver assessment and supports available to the Aging Network
  • IHS is providing information to Indian Country about unpaid caregiving.
  • HHS is working with the National Quality Forum on measures of quality services for unpaid caregivers.

Goal 3. Expand Supports

  • HHS is reviewing materials for unpaid caregivers related to cultural sensitivity.
  • HIT is being used to promote aging in place and address needs of unpaid caregivers.
  • ASPE is identifying unmet service needs (NHATS analysis).
  • ACL worked with private partners to produce a whitepaper on interventions for unpaid caregivers.
  • ACL is promoting dementia capable HCBS and specialized services.
  • National Alzheimer's Call Center.

Goal 4. Public Awareness

  • Alzheimer's awareness campaign.
  • Websites (, eldercare locator)
  • Webinars on unpaid caregiver issues.

Goal 5. Improve Data

  • Dementia Chartbook, which will include data on unpaid caregivers.

Questions for Council Consideration

  • Does the 2014 National Plan take sufficient account of the needs of families of people with dementia?
  • Should the 2015 National Plan address the needs of families differently?
  • How can the 2015 Plan address the changing roles of unpaid caregivers?
    • Clinical role and providing more medical care at home
    • Participation in care planning and implementation
  • How could the 2015 Plan involve more directly governmental and private organizations at the national, state, and local levels?
  • How should we measure success?