The Advisory Council on Alzheimer's Research, Care, and Services meets quarterly to discuss programs that impact people with Alzheimer's disease and related dementias (AD/ADRD) and their caregivers. Representatives from agencies and organizations that work with dementia treatment and care are invited to present information to the Advisory Council. The public is also given time at each meeting to provide first-hand information of their day-to-day experience.
This section provides the information available for each Advisory Council meeting.
Comments and questions, or alerts to broken links, should be sent to napa@hhs.gov.
2024 Meetings
October 21, 2024 — Advisory Council Meeting
During this meeting, the Advisory Council will hear updates from federal agencies on activities during the last quarter and from panels organized by the clinical care and risk reduction subcommittees. Presenters will discuss dementia care from different perspectives, including those of providers, people with lived experience, and CMMI GUIDE Model participants, as well as how to bridge gaps in service delivery.
General Material:
Presentation Slides:
- Federal Agency Updates
- Voice of a Person Living with Dementia Experiencing Clinical Care
- Dementia Ideal Care Map: Ecosystem View of Best Practices and Care Pathways Enhanced by Technology and Community
- Supportive Care for Dementia & GUIDE: Guiding an Improved Dementia Experience
- Health System Assessment Readiness
- Wisconsin Dementia Care Specialists
- Georgia Department of Human Services Dementia Team
- Bridging Healthcare and Social Services for People Living with Dementia and Their Caregivers
- Dementia Risk Reduction
- Brain Health Initiatives
August 5, 2024 — Advisory Council Meeting
Handouts:
Presentation Slides:
- Federal Agency Updates
- Guiding an Improved Dementia Experience (GUIDE) Model
- 5-Cog Paradigm
- Clinical Care Subcommittee Recommendations
- Alzheimer’s Disease and Related Dementias: Late-Breaking Research Findings
- Research Subcommittee Recommendations
- The Dignity – and Disruptions – of Dementia Caregiving
- Long-Term Services and Support (LTSS) Subcommittee Recommendations
- Late Breaking Risk Reduction Research Findings from AAIC
- Risk Reduction Subcommittee Recommendations
Videos:
- "Welcome” through “Federal Agency Updates"
- "GUIDE Model” through “Clinical Care Recommendations”
- "Late Breaking Research Findings” through “LTSS Recommendations”
- "Alzheimer’s Association International Conference” through “Recommendation Voting and Adoption”
- Public Comments” through “Concluding Remarks”
April 29-30, 2024 — Advisory Council Meeting
During the meeting on April 29 & 30, 2024, the Advisory Council heard updates from federal agencies on activities during the last quarter and from panels organized by the clinical care and long-term services and supports (LTSS) subcommittees. On the first day, presenters discussed care and navigation across health care settings from post-diagnosis through advanced disease. The panels on the second day focused on challenges with LTSS for people with young-onset dementia and their care partners/families, as well as challenges with dementia among aging populations experiencing homelessness or incarceration.
General Material:
Presentation Slides
- Federal Agency Updates
- Crisis in Primary Care
- Demographics and Care Post-Diagnosis
- Caregiver Perspective
- “No-Crisis” Care: Toward Lifetime Health and Wellbeing in Dementia
- Typical Cases in Primary Care of Patients Living With Dementia
- Care After Diagnosis: Specialty Memory Clinic
- Facilitating Cognitive Assessment in Primary Care for the Timely Detection of Alzheimer’s Disease
- Integrating Primary and Specialty Care
- Hospital Care: AGS CoCare HELP
- Geriatric Emergency Departments: Supporting Persons with Dementia and Care Partners through Their Health Journey
- Care Ecosystem
- IMC: Where Dementia is Primary
- Long-term Services and Supports Challenges Unique to Younger Onset
- Love, Loss & Resilience: A Caregiver Perspective on the Impact of a Young-Onset Dementia Diagnosis
- Young People of a Parent with Younger-Onset Dementia: How One Family’s Story Inspired a Mission to Solve a Societal Problem
Speaker's video presentation also available - Supporting People with Intellectual/Developmental Disabilities as They Age: The Challenges & Opportunities
- Frontotemporal Degeneration: Misdiagnosed and Misunderstood
- Young-Onset: Overview of Lewy Body Dementia, the Challenges, the Supports
- Unique Challenges of Those Living with Younger-onset AD or Other Dementia
- Those with Young Onset Dementia in the Long-Term Care Setting
- Rise in Homeless Adults 50+
Speaker's video presentation available - Aging in an Incarcerated Setting
Videos:
- Day 1: "Welcome" through "Federal Agency Updates"
- Day 1: "Opening Remarks" through "Implementing CACP"
- Day 1: "Integrating Primary and Specialty Care" through "Geriatric Emergency Edpartment"
- Day 1: "Care Ecosystem" through "Concluding Remarks"
- Day 2: "Welcome" through "Young People of a Parent with Younger-Onset Dementia"
- Day 2: "Supporting People with IDD" through "Concluding Remarks"
January 22, 2024 — Advisory Council
During the meeting, the Advisory Council heard updates from the field on implementation of disease-modifying therapies for Alzheimer’s disease and outstanding research questions. A panel presented the latest research on diagnosis and development of treatments for other populations and causes of dementia.
General Material:
- Federal Updates
- Legislative Updates
- Overview of Scientific Advances, Opportunities and Challenges
- Treating Alzheimer’s Disease with Lecanumab: The Washington University Experience
- Disease-Modifying Treatments for Alzheimer’s Disease: Research Questions
- Down Syndrome and Alzheimer’s Disease
- Lewy Body Dementia
- Frontotemporal Lobar Degeneration
- Candidate ADRD Fluid Biomarkers
Videos: