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

Return to

National Alzheimer's Project Act Home Page

Advisory Council on Alzheimer's Research, Care, and Services Page

Advisory Council on Alzheimer's Research, Care, and Services Meetings Page


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