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Advisory Council September 2011 Meeting Presentation: Federal Efforts

Tuesday, September 27, 2011

Inventories of Federal Efforts

Advisory Council Members

  • Interagency Group on ADRD formed in April
  • Tasked with NAPA requirement to examine all efforts to address ADRD
  • First step: Inventory of activities
  • Divided into three subgroups: Research, Clinical Care, Long-Term Services and Supports

Advisory Council Members

  • Research
    • NIH*
    • VA
    • CDC
    • FDA
    • AoA
    • ASPE
    • NSF
    • AHRQ
  • Clinical Care
    • CMS*
    • HRSA
    • ASPE
    • VA
    • IHS
    • SAMHSA
    • NIH
  • LTSS
    • AoA*
    • CMS*
    • ASPE
    • VA
    • NIH
    • NSF
    • SAMHSA


ADRD Research Inventory

Dr. Richard J. Hodes, M.D.
Director, National Institute on Aging/
NIH Lead ADRD Research Subgroup

  Alzheimer's Disease and Related Dementias Federal Research Continuum  
Flow Chart: Basic leads to NIH, VA, NSF; Pre-Clinical leads to NIH, VA; Drug Discovery leads to NIH, FDA, VA; Clinical leads to NIH, VA, FDA; Social, Care, Support, Health Systems leads to NIH, VA, AHRQ, AoA, ASPE; Population Studies leads to NIH, V, CDC. Training and Career Develop leads to each group (Basic; Pre-Clinical; Drug Discovery; Clinical; Social, Care, Support, Health Systems; Population Studies).

Development of FY 2010 ADRD Federal Research Inventory

  1. Agreement on search terms: “Alzheimer’s Disease,” “Dementia,” “Frontotemporal Dementia”, “Mild Cognitive Impairment”
  2. Used information from Centralized Databases: NIH Project RePORTER
  3. ADRD Ontology Selected and Populated

Alzheimer's Disease and Related Dementias Research Ontology

  • Biology and pathophysiology
  • Diagnosis, assessment and disease monitoring
  • Drug discovery, preclinical drug development, clinical interventions
  • Epidemiology
  • Social-behavioral, care, support, health systems
  • Research resources (training, infrastructure, technology)


  FY2011 ADRD Federal Research Funding by Category  
Research Category   Funding Amount  
A. Biology and Pathophysiology $187,054,063
B. Disease Diagnosis and Assessment $82,954,009
C. Drug Development, Pre-Clinical Development, and Clinical Research   $67,259,878
D. Epidemiological and Longitudinal Studies $52,745,309
E. Socio-behavioral ,Care, Support, and Health Systems $29,249,374
F. Research Resources $83,260,797
Total $502,523,430


  FY2011 ADRD Federal Research Funding  
by Category and Agency
  Biology &
Diagnosis &
  Drug Dev., Pre-  
Clinical Dev. &
& Longitudinal
Care, Support
  Health Systems
NIH 578 233 120 75 23 228
  176,827,511 76,788,041 61,738,806 49,357,507 10,129,460 82,769,638
CDC 0 0 0 5 0 0
  $0 $0 $0 $1,175,437 $0 $0
VA 44 22 16 10 19 0
  $10,227,172 $6,128,168 $5,021,863 $1,771,057 $4,809,867 $0
AHRQ 0 1 1 2 10 1
  $0 $37,800 $499,209 $441,308 $14,310,047 $491,159
Total 622 256 137 92 52 229
    $187,054,683   $82,954,009   $67,259,878   $52,745,309   $29,249,374   $83,260,797


ADRD Clinical Care Inventory

Dr. Shari Ling
Medical Officer, Office of Clinical Standards and Quality
Centers for Medicare and Medicaid Services/
Lead ADRD Clinical Care Subgroup

Scope and Assumptions

  • Dementia
    • Alzheimer’s disease, dementia of other etiologies
  • Focus
    • Patients rather than the disease itself
      • Dual eligible 22% with dementia includes 11% with 5+ chronic conditions
    • Caregivers
  • All services and all settings
    • “all of places where people with Alzheimer’s disease (and caregivers) interact with the service system”
    • Relevant but not necessarily specific to dementia?
    • Across the disease continuum


  • Broad environmental scan of existing services and programs
  • Clinical services provided in long-term care settings were excluded to avoid duplication with Long-Term Care workgroup
  • Services and programs reviewed and discussed over telephone conferences
  • Inventory created across the care settings by disease stage
  • Identified gaps in services

Relevant Clinical Care Topics

Clinical Focus

  • Prevention (primarily of vascular dementia- related to cardiovascular disease)
  • Detection
  • Diagnosis
  • Treatments (Pharmacological, behavioral)
  • Care Coordination
    • Transitions between providers/settings
    • Coordination with LTSS
  • Advanced Care Planning

System Focus

  • Professional Workforce:
    • Physician (primary care, geriatricians, etc)
    • Nurses
    • Social Work/Care Managers  and Home Health Aides/Home Care Providers
    • Training
  • Social/Legal Issues
    • Competency/independence/autonomy/driving
    • Financial management
    • Elder abuse (coordinate with LTSS group)


  Patient- & Family-Centeredness  
Flow Chart: Phase 1: Population at Risk; Phase 2: Evaluation & Initial Management; Phase 3: Follow-up Care. Effective Communication & Coordination -- End of Phase 1 through Phase 3. Health Living -- Phase 1. Safety -- Phase 2, Phase 3. Effective Prevention & Treatment -- Half way through Phase 1 through Phase 3. Clinical Episode Begins between Phase 1 and Phase 2. End of Episode -- Health Outcomes and Total Cost of Care at end of Phase 3. Affordability across all Phases.


  Health System Functions  
    Prevention     Diagnosis     Management   Acute
Patient Effective CVD management Detection & Assessment of Cognitive Impairment Medicinal
Care Coordination & Planning
Caregivers Burden management Stress Behavioral
System Workforce training Case management

Existing Clinical Programs and Services for Persons with Dementia

  • Ambulatory Care
  • Hospital Care
  • Geriatric Evaluation and Management (GEM)
  • Geriatric Primary Care
  • Home Hospice Care  
  • Hospice and Palliative Care Consultation Team
  • Geriatric Research, Education, and Clinical Centers (GRECCs)
  • Mental Illness Research, Education, and Clinical Centers (MIRECCs)
  • Older Adult Targeted Capacity Expansion (TCE)
  • KIT on Evidence Based Practices to Address Depression in Older Adults
  • Reducing Adverse Drug Events:  Patient Safety and Clinical Pharmacy Services Collaborative (PSPC)


  Affordable Care Act Programs  
  Provision Name     Provision Description  
3021 Establishment of Center for Medicare and Medicaid Innovation within CMS Utilizing geriatric assessments and comprehensive care plans to coordinate the care (including through interdisciplinary teams) of applicable individuals with multiple chronic conditions and at least one of the following:
‘‘(I) An inability to perform 2 or more activities of daily living.
‘‘(II) Cognitive impairment, including dementia
3024 Independence at home demonstration program Creates a new demonstration program for chronically ill Medicare beneficiaries to test a payment incentive program
3026 Community-based care transitions program Requires the Secretary establish a community-based transitions program that provides funding to hospitals and community-based entities that furnish evidence-based care transition services to Medicare beneficiaries at high risk for readmission.
4103 Medicare coverage of annual wellness visit providing a personalized prevention plan Provides coverage under Medicare, with no co-payment or deductible, for an annual wellness visit and personalized prevention plan services. Such services would include a comprehensive health risk assessment. The personalized prevention plan would take into account the findings of the health risk assessment and include elements such as: a five- to ten-year screening schedule; a list of identified risk factors and conditions and a strategy to address them; health advice and referral to education and preventive counseling community-based interventions to address modifiable risk factors such as physical activity, smoking, and nutrition.
5305 Geriatric education and training; career awards; comprehensive geriatric education - All family caregiver and direct care provider training programs shallinclude instruction on the management of psychologicaland behavioral aspects of dementia, communication techniques for working with individuals who have dementia, and the appropriate, safe, and effective use of medications for older adults.
5507 Demonstration project to address health professions workforce needs; extension of family-to-family health information centers Training specific to an individual consumer’s needs (including older individuals, younger individualswith disabilities, individuals with developmental disabilities, individuals with dementia, and individuals with mental and behavioral health needs)
6114 National demonstration projects on culture change and use of information technology in nursing homes Each demonstration project conducted under this section shall take into consideration the special needs of residents of skilled nursing facilities and nursing facilities who have cognitive impairment, including dementia.
6121 Dementia and abuse prevention training Requires facilities to include dementia management and abuse prevention training as part of pre-employment initial training for permanent and contract or agency staff, and if the Secretary determines appropriate, as part of ongoing in-service training.


  National Quality Forum Measure Appolication Partnership, 2011  
Flow Chart: Access -- Better Care Affordable Care Healthy People/Communities. Better Care Affordable Care Healthy People/Communities -- Person- & Family-Centeredness; Effective Prevention & Treatment; Safety; Healthy Living; Affordability; Effective Communication & Coordination. Accreditation, Certification & Regulation; Public Reporing; Consumer Incentives & Benefit Designs; Performance-Based Payment lead to Better Care Affordable Care Healthy People/Communities. Workforce & Capacity Development; Health Information Technology; Innovation & Rapid-Cycle Learning; Performance Measurement; Evaluation & Feedback; Quality Improvement & Technical Assistance lead to Infrastructure Supports.


ADRD Long-Term Services and Supports Inventory

Cindy Padilla
Principal Deputy Assistant Secretary for Aging/
Co-Lead ADRD LTSS Subgroup

Workgroup Primary Tasks

  • Develop an inventory of programs serving persons with Alzheimer’s disease and their caregivers.
  • Begin an analysis of gaps/opportunities within and among these programs.


  LTSS Inventory Categories  
Category Subsections
Planning for Long Term Care LTC Financing (CLASS, LTC insurance) [global and individual]; LTC Planning (Hospice, End of Life); Care Coordination (Care Transitions, Consumer Direction)
Long Term Services and Supports Home Care/Personal Care; Caregiver Support (Formal, Informal); Health, Function and Social Issues (Mental Health, Daily Tasks, Driving, Independence); Special Populations (Intellectual Disabilities, Mental Health, Younger Onset)
Residential Care Settings Nursing Home; Assisted Living
Work Force Staff Education/Training; Dementia-Capability
Quality and Safety Elder Abuse; LTC Ombudsmen; Guardianship; Advocacy for Individuals

LTSS Inventory

  • Using these five categories, each participating agency (AoA, CMS, NIH and VA) supplied basic descriptive information about their programs, including participants, funding, and a brief description.
  • Analysis of the Inventory by AoA and CMS is underway.


  LTSS Inventory: Examples  
Program Profile
Alzheimer's Disease Supportive Services Program
  • Administered by AoA
  • Services for persons w/dementia or their caregivers
  • Awarded to entities of state government (e.g. State Unit on Aging, University)
National Alzheimer’s Call Center
  • Administered by AoA
  • Information and counseling service for persons with Alzheimer’s, family members and unpaid caregivers
  • Available to people in 56 states and territories, 24 hours a day, 7 days a week, 365 days a year
Medicaid Nursing Home Benefit
  • Administered by CMS
  • 55.8 % of nursing home residents have mild to very severe cognitive impairments
  • Federal reimbursement for eligible services provided to Medicaid beneficiaries
Medicaid Home and Community Based Services
  • Administered by CMS
  • States have several opportunities, including new ones under the Affordable Care Act to offer home and community based services to persons with Alzheimer’s disease.
VA Employee Education System
  • Education and training for VA staff (e.g. physicians, nurses, social workers, pharmacists, occupational and physical therapists, dieticians)
  • Dementia recognition and diagnosis, challenging behaviors, safety, communication strategies, emergency preparedness
VA Interdisciplinary Planning Committee
  • Continuous quality improvement effort
  • Veterans Health Administration Dementia Steering Committee, Veterans Integrated Service Network Dementia Committees, and Veterans Affairs Medical Center Dementia Committees.