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Advisory Council July 2014 Meeting Presentation: Improving Dementia LTC Blueprint


Monday, July 21, 2014


A Blueprint for Improving Dementia Long-Term Care

Regina Shih

The majority of dementia costs are for long-term services and supports

  • Dementia's Mounting Toll on the U.S. Economy by Michael D., Hurd, Paco Martorell, Adeline Delavande, Kathleen J. Mullen and Kenneth M. Langa. Santa Monica, CA: RAND Corporation, 2013.
    • Yearly costs as high as cancer or heart disease
    • 75-84% of costs related to LTSS, not medical care
    • Number of Americans with dementia will double by 2050

LTSS costs for dementia are especially high

  • Medicare:
    • Short-term nursing home stay
    • Home health
    • Hospice
    • Spending is 3 times higher for dementia
  • Medicaid:
    • Asset-based eligibility
    • Spending is 19 times higher for dementia
Pie Chart: Out-of-pocket ($45.5 billion, 21.6%); Other Private ($24.4 billion, 11.6%); Other Public ($9.7 billion, 4.6%); Medicaid ($131.4 billion, 62.3%).
Source: National Health Policy Forum, based on data from 2011 National Health Expenditure Accounts

Despite high costs, the LTSS system is fragmented

  • Only ½ of dementias are diagnosed; only ½ of those receive support
    • Negative outcomes from poor coordination across settings
  • Heavy reliance on family caregivers
    • Caregiver ratio will drop 7:1 to 3:1
  • Citations: Boustani et al., 2003; U.K. Department of Health, 2013; World Health Organization, 2012; Gozalo et al., 2011; Noel 2012; Alzheimer's Association, 2013; Redfoot, Feinberg, and Houser, 2013. Photos via Group fotograpico effectocheri and Jeffrey Brendan, CC via flickr

RAND's Blueprint has a unique focus

  • Long-term Care National Plans
    • Commission on Long-Term Care, Report to Congress, September 30, 2013
    • Long-Term Care Commission, A Comprehensive Approach to Long-Term Services and Supports, September 23, 2013
  • Dementia National Plans
    • National Plan to Address Alzheimer's Disease
    • Alzhiemer's Foundation of America, Time to Build, December 2012
  • LTSS policy solutions through the lens of dementia
  • A multi-sector pathway

Thirty stakeholders from different groups identified challenges and policy options

  • Stakeholders
    • Patients and the Public
    • Purchasers
    • Payers
    • Policymakers
    • Product makers
    • Providers
    • Principal investigators
  • We asked:
    • What problems do you face in the delivery of care, development of policy, or related research?
    • How can policy address the problems you identified?

We selected 14 evaluation metrics

Area Impact   Equity   Feasibility
Access Quality Cost Implementation
  • Awareness
  • Availability  
  • Utilization
  • Effectiveness
  • Safety
  • Patient/caregiver satisfaction  
  • Coordination of care
  • Efficiency  
  • Financing
  • Legal feasibility
  • Political feasibility
  • Operational feasibility  
  • Timeframe

We analyzed policy options

25 high-impact policy optionsmeet 5 objectives

  • Improve awareness & detection
  • Improve access
  • Promote person- & caregiver-centered care
  • Support family caregivers
  • Reduce cost burden

A number of policy options could be enacted in the short-term for immediate change

Improve awareness & detection

  • Create specialized outreach and education programs about dementia signs/symptoms
  • Encourage providers' use of cognitive assessment tools

Improve access

  • Broaden home- and community-based waiver programs, participant-directed services, and states' infrastructures
  • Integrate web- and other technology- based services
  • Expand nurse delegation

Promote person- & caregiver-centered care

  • Jointly identify person living with dementia and family caregiver
  • Standardize complementary assessment tools
  • Create and disseminate existing dementia best practices for professional care workers

Support family caregivers

  • Provide dementia-specific training and resources to family caregivers
  • Offer tax incentives to promote family caregiving

Other policy options are unique to the RAND Blueprint

  • Link private LTC insurance to health insurance
  • Include HCBS in state Medicaid plans
  • Expand financial compensation programs to family caregivers
  • Establish cross-setting teams

Continued Progress

  • Conduct more robust evaluations
  • Build consensus about priority options
  • Tailor approaches for vulnerable populations
  • Set metrics to evaluate progress

You can review the study and full list of options at

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