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Advisory Council January 2015 Meeting Presentation: Advanced Dementia Panel

Monday, January 26, 2015

Washington, D.C.

Advanced Dementia Expert Panel Summary and Key Recommendations


  • To convene experts to review current research, innovative practices, and health policy pertinent to the care of persons with advanced dementia and their families, and
  • To make recommendations to HHS and the NAPA Advisory Council about priority initiatives to improve that care.


  • ~ 1,000,000 Americans with advanced dementia
  • Pressing need to provide high quality care for these persons and families
  • Special considerations

Advanced Dementia

  • Vulnerable population with unique needs
  • Severe functional and cognitive impairment
  • Reliance on surrogate decision-making
  • Cannot live alone
  • Family/caregiver burden


  • Co-Chairs: Susan Mitchell MD MPH, and Laurel Coleman MD
  • Facilitator: Katie Maslow, IOM
  • Core Group: Attend all meetings, formulate final recommendations
  • Experts: Specific meetings
  • Observers: public, professional and provider organizations, advocates, and staff from many federal agencies (AoA/ACL, AHRQ, ASPE. CDC,CMS, HRSA, NIA, NINR, SAMHSA, and VA)

Core Group +

  • Co-Chairs: Coleman, Mitchell
  • A. Bonner PhD: Northeastern, policy
  • S. Brangman MD: SUNY, care delivery, education
  • M. Ersek RN: UPenn, nursing, research, care delivery
  • L. Hanson MD, MPH: UNC, clinical research
  • R. Sean Morrison MD: Mount Sinai, research, policy
  • Also participated in drafting final recommendations
    • D. Meier MD: Center to Advance Palliative Care, policy
    • M. Gallagher DNP: Hospice of the Valley, care delivery
    • G. Sachs MD: Indiana University, clinical research
    • J. Teno MD: Brown University, clinical and policy research
    • D. Hoffman: NY State Health Department, public policy


  1. Research
    • January 28, 2014
  2. Clinical Practice
    • September 28, 2014
  3. Policy
    • January 21, 2015

Research: Participants

  • Core Group
  • Invited Experts
    • Marilyn Albert, PhD
    • Ken Covinsky, MD
    • Joan Teno MD, MSc
    • Richard Schultz, PhD
    • Constantine Lyketsos, PhD
    • Greg Sachs, MD
  • Observers

Research: Agenda

  • Advanced Dementia Research Overview- Mitchell
  • Patient Experience- Hanson
  • Family Experience- Ersek
  • Health Services Utilization- Teno
  • Infrastructure and Funding-Morrison

Research: Main Conclusions

  • 25 years of research
  • Design: Descriptive >>> intervention
  • Methodology: Database = primary
  • Setting: nursing home> hospital> community
  • Focus: Feeding tubes > infections > hospice > decision-making > prognosis > family > costs
  • Knowledge: Delineated problems and main targets to improve care
  • Clinical Course
    • Terminal condition, prognostication difficult
  • Sources of Distress
    • Treatable symptoms, measurement challenges
  • Treatment of clinical complications
    • Feeding and infections most common
    • Tube-feeding has no benefit, overuse of antibiotics
  • Health services
    • Hospice helps but under-utilized
    • Hospital: common, costly, burdensome, avoidable
    • Misuse of Skilled Nursing Facility (post acute care)
    • Disparities
  • Strategies to improve care
    • Mostly observational: Advance care planning, hospice,
    • Two RCTs: decision support tools
  • Clearly delineated opportunities to improve care
  • Current research priority: determine how to address opportunities
    • Design and test clinical interventions and models of care to improve advanced dementia care
    • Design and evaluate health policy initiatives that incentivize high quality goal-directed care

Clinical Practice: Participants

  • Core Group
  • Invited Experts
    • Margaret Noel MD – MemoryCare
    • Jody Comart PhD - Hebrew Senior Life
    • Jed Levine - NY Chapter of Alzheimer’s Association
    • Ashley Shreves MD – Mt. Sinai Hospital, NY
    • Maribeth Gallagher DNP – Hospice of the Valley
    • Dayna Cooper MSN – VA Geriatrics and Extended Care
    • Greg Sachs MD – Indiana University
    • Ann Wyatt MSW – Alzheimer’s Association consultant
    • Tena Alonzo MA – Beatitudes CCRC

Clinical Practice: Agenda

  • Innovative practices in care for persons with advanced dementia in:
    • Nursing homes
    • At home and in the community
    • In hospice
    • In the hospital and emergency department
    • Support and training for families and other caregivers

Clinical Practice: Main Conclusions

  • Nursing Home Program – Beatitudes
    • High family and staff satisfaction
    • Low medication use and reduced hospital and ER use.
  • Community programs –
    • Focus on palliative care - support for family/caregivers
    • Advance care planning is common theme.
    • Persons with dementia are less likely to die in the hospital and have lower levels of pain and distress.
  • Hospice Program
    • Published results with lower use of restraints, feeding tubes, lower rates of hospitalizations.
    • Works cooperatively with long term care facilities
    • Excellent symptom management and family satisfaction.
  • New strategies and programs –
    • All show promising results: training family caregivers, ER consultations, printed guides for advance care planning/education.
  • Very POSITIVE and encouraging day for all.
  • Challenges
    • Promising programs are slow to “scale up” and replicate
    • Programs merit broader evaluation
    • Successful programs need good leaders and culture change
    • Are there policy incentives/ and regulatory “levers” that could hasten implementation of these models?

Policy: Participants

  • Core Group - and David Hoffman
  • Invited Experts:
    • Diane Meier MD: Mt. Sinai Hospital, CAPC
    • Joan Teno MD: Brown University
    • Susan Miller PhD: Brown University
    • David Grabowski PhD: Harvard University
    • Greg Sachs MD: Indiana University

Policy: Agenda

  • Transforming care for persons with advanced dementia – what will it take?
  • How do we measure quality for this population?
  • Policy barriers and opportunities for providing good care in various settings:
    • Home and community
    • Nursing home
    • Hospice
    • Hospital and care transitions

Policy: Main Conclusions

  • Very complex policy issues with high risk for unintended consequences
  • Lack of access to palliative care
  • Long-term care: complex fiscal and regulatory policies create misaligned incentives that promote poor care
  • Hospice: problems with access for persons with dementia, documentation of dementia diagnosis, and coordination with the Medicare SNF benefit
  • Home and community care: Large number of persons with advanced dementia but little information about specific needs
  • Acute and sub-acute care settings and services: High use but care is often not beneficial
  • Quality metrics: many unique issues for advanced dementia

Final Recommendations

  • Formulated by Core Group
  • Principles
    • Focus on advanced dementia
    • Build from and fill gaps in the existing National Plan
    • Not iterative of other federal initiatives
    • Focus on priorities
    • Feasible

Over-Arching Goal

  • To ensure the quality of life and quality of care for persons living with advanced dementia and their families across care settings

Strategy 1

  • To ensure access to high quality palliative care for persons with advanced dementia and their families across all settings
    • Primary palliative care
    • Palliative care consultation
    • Hospice
      • Beneficial but …
      • Major access concerns

What is Palliative Care?

  • Specialized medical care for persons with serious illnesses.
  • Relief from the symptoms, pain, and stress of a serious illness - whatever the diagnosis.
  • Improves quality of life for the person and family.
  • Team of doctors, nurses, and other specialists who work with a person's other doctors to provide an extra layer of support.
  • Appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatments.

Strategy 2

  • Prepare a workforce that is competent to deliver care to persons with advanced dementia and their families
    • Healthcare workers (nurses, physicians, direct care workers, social workers) and long-term services and supports (e.g., transportation, meals)
    • Culturally competent
    • Across all settings
    • New and existing workers

Strategy 3

  • Incentivize documentation and tracking of level of functional and cognitive status to identify people with advanced dementia
    • Harmonize documentation across settings
    • Critical to care, research, program evaluation, and policy

Strategy 4

  • Support research, evaluation and dissemination of models of care to meet the needs of persons with advanced dementia and their families
    • Across care settings
    • Align payment and delivery
    • Unique considerations that merit focus on advanced dementia

Strategy 5

  • Leverage existing mechanisms to ensure access to high quality care for persons with advanced dementia and their families
  • Examples: payment, regulatory, and public reporting
    • Consider existing infrastructure, e.g. state coalitions to improve dementia care, QIOs (Quality Improvement Organizations), HHS Partnership for Patients

Strategy 6

  • Support quality metrics that ensure transparency and accountability for the care of persons with advanced dementia and their families
    • Must include proxy reporting (e.g. family, nurse)
    • Examples of unique metrics
      • Effective symptom assessment and management
      • Burdensome, non-beneficial treatments (e.g., tube feeding, transitions)
      • Care concordant with values and preferences
    • Critical for clinical care accountability and research and policy evaluation