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 (alzheimers.gov, 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?