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Advisory Council July 2018 Meeting Presentation: Non-Federal Member Updates

Friday, July 30, 2018

Printer Friendly Version in PDF Format (5 PDF pages)


Non-Federal Member Updates

Allan Levey, Gary Epstein-Lubow, Angela Taylor, Debra Cherry, Cynthia Huling Hummel, Rob Egge, Michelle Dionne-Vahalik, Katie Brandt, Laura Gitlin

Georgia Memory Net

  • Clarity. Care. Community
  • The Need:
    • 385k with self-reported cognitive impairment
    • 80% have not yet been evaluated or treated
    • $2B in preventable admissions expenses
  • The Goals:
    • Encourage Annual Wellness Visits, administer the Mini-Cog assessment tool
    • All citizens of GA will be within 90 miles of a Memory Assessment Clinic
    • Connect patients with local services for continued care
  • Our Collaborators:
    • Alzheimer's Association
    • MCG
    • Georgia Department of Human Services
    • Morehouse School of Medicine
    • Mercer University School of Medicine
    • Rosalynn Carter Institute for Caregiving
    • Aging and Disability Resource Connection
    • Emory

Gary Epstein-Lubow, MD

  • Hebrew SeniorLife:
    • Continuity of health care services from community-based to residential care
    • Multiple senior living communities
    • Institute for Aging Research (IFAR)
    • Harvard Medical School affiliation
  • Center for Memory Health at Hebrew SeniorLife:
    • Mission: "The most trusted source of care and education for persons with a memory concern...
    • Vision: "To lead Massachusetts and the nation in creating and implementing models of excellence...
    • Program Goals: 1) Care & Services, 2) Research & Innovation, 3) Education, 4) Policy Development & Advocacy

Lewy Body Dementia Association

  • NEW: Research Centers of Excellence (RCOE) Program
    • Coordinating Center:
      • Mayo Clinic, Rochester, MN
      • Brad Boeve, MD, primary investigator
    • Aims of the Program
      • Increase access to high quality clinical care over the course of LBD
      • Establish a clinical trials-ready network
      • Increase access to support for people living with LBD and their caregivers
      • Increase knowledge of LBD among medical and allied (or other) professionals
      • Create infrastructure and resources to advance LBD research
    • 24 Academic Locations:

System Changes in California's Dual Demonstration: The Dementia Cal MediConnect Project

  • Screening and Diagnosis
    • 10 have a trigger question for Cognitive Impairment in Health Risk Assessment
    • 6 have adopted a validated screening tool and 3 integrated results into their EHR
    • 5 have a protocol to refer members for a diagnostic evaluation if screen is positive
  • Caregiver Identification, Assessment, and Involvement
    • 9 report documentation of caregivers
    • 4 plans report engaging caregivers in care planning and Interdisciplinary Care Teams
    • 2 adopted validated measure of caregiver stress and strain and integrated into EHR
    • 6 offered respite as an optional benefit
    • 6 plans offer or arrange for caregiver education
  • Referrals to HCBS
    • 4 plans have formally adopted ALZ Direct Connect
Organizational chart showing how funding and information starts with ACL, moves to state agencies, and then to county and local organizations.

Alzheimer's: A Call to Serve!

Cynthia Huling Hummel, B.S., MDiv, D.Min.

Alzheimer's Association

  • AIM Advocacy Forum 2018
    • 30th Annual Alzheimer's Association AIM Advocacy Forum
    • 1,200 attendees from all 50 states
    • Honored Sens. Susan Collins and Catherine Cortez Masto with AIM Humanitarian of the Year Award
    • Featured remarks by Dr. Francis Collins
    • Senate Aging Committee Hearing featuring advocate and caregiver Marcia Gay Harden
  • AAIC 18
    • More than 5,000 in Chicago for the largest gathering of Alzheimer's and dementia researchers in the world.
    • 100 sessions and 550 podium presentations covering the spectrum of dementia research
    • Highlights included presentations on:
      • Aberrant network activity in Alzheimer's
      • The latest in neuroimaging and biomarkers
      • The relationship between general anesthesia and cognitive decline
      • Results from important clinical trials

Alzheimer's Disease/Dementia Initiatives

  • Alzheimer's Disease and Dementia Care Training
  • Virtual Dementia Tours
  • Person-Centered Thinking Training
  • Music & Memory
  • Get on board the TRAIN
  • Reminiscence Activity Project
  • Texas OASIS: Dementia Care Training Academy
  • Advanced Person-Centered Behavior Training for Residents with Dementia
  • Handfeeding Techniques for Nursing Facility Residents Train-the-Trainer Program
  • Geriatric Symposium

Massachusetts General Hospital Frontotemporal Disorders Unit

  • Project Highlight: Increasing Access to Memory Care for Atypical AD/ARD Patients through Partnership, Education and Clinical Support
  • Presented by: Katie Brandt, Director of Caregiver Support Services & Public Relations
    • MGH FTD Unit: Atypical Patient Population
    • Existing Memory Care Residential Programs: Limited Experience and Understanding of Unique Care Needs
    • Prototype Informal Partnership:
      • Clinical Support (e.g., monthly calls between FTD Unit nurse and residence's nurse practitioner)
      • Educational Opportunities (e.g., on-site staff workshops)
      • Community Engagement (e.g., residence staff attendance at, and support of, MGH FTD Unit community events)
    • Opportunities for Scale-Up

Sometimes you just need a checklist." -Washington Post

  • Adult Day Service Plus
    • NIA funded
    • Providing caregivers support who use ADS
  • WeCareAdvisor
    • NINR
    • NIA (in review)
    • Reduced stress, behavioral symptoms
  • Tailored Activity Program
    • NIA, VA, NIMH, ACL
    • Reduced behavioral symptoms, distress
  • Living with Dementia: Impact on Individuals, Caregivers, Communities and Societies
  • In Medicaid Waiver Programs
    • Project COPE
    • NIA (PI -Fortinsky)
    • Translation in Australia
    • (PI-Clemson)
    • Improved caregiver wellbeing; reduced functional disability
  • A Caregiver's Guide to Dementia
    • Laura N. Gitlin, Ph.D. and Catherine Verrier Piersol, Ph.D., OTR/L
  • Better Living With Dementia
    • Laura N. Gitlin and Nancy A. Hodgson