ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES
January 17-18, 2012
Draft Framework Overview
Helen Lamont
Challenges
- There are no pharmacological or other interventions to definitively prevent, treat, or cure the disease.
- Improved care quality is needed.
- Family members and other informal caregivers, who take on the responsibility of caring for a loved one with AD, need support.
- Stigmas and misconceptions associated with AD are widespread and profoundly impact the care provided to and the isolation felt by people with AD and their families.
- Progress should be coordinated and tracked.
Goals
- Prevent and Effectively Treat Alzheimer’s Disease by 2025.
- Optimize Care Quality and Efficiency.
- Expand Patient and Family Support.
- Enhance Public Awareness and Engagement.
- Track Progress and Drive Improvement.
Proposed Actions to Achieve Goals 4 and 5
Strategy 4.A: Educate the public about Alzheimer's disease
- Design a national education and outreach campaign
- Conduct a national education and outreach campaign on Alzheimer’s disease
Strategy 4.B: Work with state and local governments to improve coordination and identify model initiatives to advance Alzheimer’s disease awareness and readiness across the government
- Convene leaders from State and local governments
- Continue to convene Federal partners
Strategy 5.A: Enhance HHS’ ability to track progress
- Identify major policy research needs
- Identify needed changes or additions to data
Strategy 5.B: Monitor progress on the National Plan
- Track plan progress
- Update the National Plan annually
Feedback on Framework and Goals 4 and 5
Advisory Council
Proposed Actions to Achieve Goal 3
Cindy Padilla
Strategy 3.A: Ensure receipt of culturally sensitive education, training, and support materials
- Identify culturally sensitive materials and training
- Distribute materials to caregivers
- Utilize informatics for caregivers and persons with AD
Strategy 3.B: Enable family caregivers to continue to provide care while maintaining their own health and well-being
- Identify unmet service needs
- Review the state of the art of evidence-based interventions that can be delivered by community-based organizations
- Develop and disseminate evidence-based interventions for people with Alzheimer’s disease and their caregivers
- Expand implementation of effective caregiver interventions
- Support caregivers in crisis and emergency situations
Strategy 3.C: Assist families in planning for future long-term care needs
- Examine awareness of long-term care needs and options to identify barriers to planning
- Expand long-term care awareness efforts
Strategy 3.D: Maintain the dignity, safety and rights of people with Alzheimer’s disease
- Educate legal professionals about working with people with Alzheimer’s disease
- Monitor, report and reduce use of anti-psychotic agents for persons with Alzheimer’s disease in nursing facilities
Feedback on Framework and Goal 3
Long-Term Services and Supports Subcommittee
David Hoffman
Proposed Actions to Achieve Goal 2
Shari Ling
Strategy 2.A: Build a workforce with the skills to provide high-quality care
- Collect and disseminate dementia-specific guidelines and curricula for all provider groups across the care spectrum
- Strengthen the direct-care workforce
- Strengthen the State aging workforce
- Support State and local policies
Strategy 2.B: Ensure timely and accurate diagnosis
- Link the public to diagnostic and treatment services
- Identify and disseminate appropriate assessment tools for use in the Medicare Annual Wellness Visit
Strategy 2.C: Educate and support patients and families upon diagnosis
- Educate physicians and healthcare providers about accessing long-term care
- Enhance assistance for people with AD and their caregivers to plan for care needs
Strategy 2.D: Identify and implement high-quality dementia care guidelines and measures across care settings
- Explore dementia care guidelines and measures
Strategy 2.E: Ensure that people with AD experience safe and effective transitions between care settings and systems
- Implement and evaluate new care models to support effective care transitions for patients with Alzheimer’s disease
- Develop an AD-specific toolkit on care transitions
Strategy 2.F: Advance coordinated and integrated health and long-term care services and supports for individuals living with AD
- Review evidence on effectiveness of care coordination models for people with Alzheimer’s disease
- Implement and evaluate care coordination models
Strategy 2.G: Improve care for populations disproportionally affected by Alzheimer’s disease
- Create a taskforce to improve care for these specific populations
Feedback on Framework and Goal 2
Clinical Care Subcommittee
Laurel Coleman
Proposed Actions to Achieve Goal 1
Richard Hodes
Strategy 1.A: Identify research priorities and milestones
- Hold an international Alzheimer’s disease research summit to identify priorities, milestones, and a timeline (May 2012)
- Solicit public and private input regarding Alzheimer’s disease
- Convene a scientific workshop on other dementias in 2013
Strategy 1.B: Enhance scientific research aimed at preventing and treating Alzheimer’s disease
- Expand research to identify the molecular and cellular mechanisms underlying Alzheimer’s disease, and translate this information into potential targets for intervention
- Continue genetic epidemiologic research to identify risk and protective factors for Alzheimer’s disease.
- Increase enrollment in clinical trials and other clinical research through community, national, and international outreach
- Continue clinical trials on the most promising pharmacologic interventions
- Continue clinical trials on the most promising lifestyle interventions
Strategy 1.C: Accelerate efforts to identify early and presymptomatic stages of Alzheimer’s disease
- Identify imaging and biomarkers to monitor disease progression
- Maximize collaboration among Federal agencies and with the private sector
Strategy 1.D: Coordinate research with international public and private entities
- Inventory Alzheimer’s disease research investments and use a research ontology framework to analyze research portfolio information
- Expand international outreach
Feedback on Framework and Goal 1
Research Subcommittee
Jennifer Manly
Public Input
To provide input on the National Plan, please email napa@hhs.gov
Long Term Services and Supports Subcommittee Presentation Slides [Available January 27, 2012]
Full PDF Version (4 PDF pages)
Clinical Care Subcommittee Presentation Slides [Available January 27, 2012]
Full PDF Version (6 PDF pages)
Research Subcommittee Presentation Slides [Available January 27, 2012]
Full PDF Version (6 PDF pages)
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