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Research Brief
Millions of Americans already struggle with dementia, a degenerative cognitive condition that costs the United States billions of dollars annually

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Millions of Americans already struggle with dementia, a degenerative cognitive condition that costs the United States billions of dollars annually, more than cancer or heart disease. As the nation's population grows grayer, these numbers will only soar. RAND researchers have developed a national blueprint to help decisionmakers improve long-term services and supports that are crucial for those with dementia and those who care for them.

Costs and number of people afflicted will soar

Promote high-quality care centered on individuals and families

  1. Establish centers-of-excellence models for residential dementia care through life's end.
  2. Minimize transitions and improve coordination of care transitions across settings and stages of dementia.
  3. Expand financial incentives for bundled home, community, and institutional services.
  4. Establish cross-setting teams for those with dementia, focusing on returning them to their communities.
  5. Encourage use of quality measurement to ensure that assessment tools get used for those with dementia and their family caregivers.
  6. Identify those with dementia, jointly with family caregivers.
  7. Standardize complementary assessment tools for those with dementia and their family caregivers.
  8. Create new and disseminate existing dementia best practices and training programs for formal caregivers.
  9. Provide specialized geriatric training during schooling for direct-care professionals.
Promote high-quality care centered on individuals and families

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Increase public awareness and improve early detection of dementia

  1. Create specialized outreach and education programs about dementia for the public, professional services organizations, and those experiencing younger-onset dementia.
  2. Encourage providers to use cognitive assessment tools for early detection and recognition of this condition.
Increase public awareness and improve early detection of dementia

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Improve access to long-term services and supports

  1. Establish new and expand home- and community-based services.
  2. Integrate web- and other technology-based services.
  3. Improve existing and create new incentives for the direct-care workforce.
  4. Expand nurse-delegation laws in all states.
  5. Broaden Medicaid home- and community-based services waiver programs, self-directed services, and states' infrastructures.
  6. Include home- and community-based services and managed care in state Medicaid plans.
  7. Refine Medicare post–acute care and hospice benefits.
Improve access to long-term services and supports

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Provide better support for family caregivers

  1. Provide families and volunteer groups with dementia-specific training and information on resources.
  2. Offer tax incentives to promote family caregiving.
  3. Expand financial compensation programs to family caregivers.
  4. Expand family-friendly workplace policies.
Provide better support for family caregivers

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Reduce dementia's cost burden on individuals and families

  1. Link private long-term care insurance to health insurance.
  2. Create a national voluntary opt-out long-term care insurance program through public-private partnership. —OR—
  3. Adopt a national single-payer long-term care insurance system.
Reduce dementia's cost burden on individuals and families

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Critical Services and Supports

Long-term services and supports for dementia include daily assistance with the basics of living — getting dressed, fed, bathed, and driven around, as well as help with health maintenance. Earlier RAND research estimates these services and supports — and not direct medical attention — comprise the greatest cost in dementia care. The burden for providing this continuing, progressive assistance often falls heaviest on spouses, families, and other loved ones — with women, in particular, reducing their paying work or leaving jobs to provide care.

Further, there are large and growing challenges in this caregiving field — with dementia services, information, training, and financing. For middle-class Americans, dealing with the costs can be particularly daunting.

Call to Action

Life expectancies have increased so that it is possible for two generations within one family to be living with dementia at the same time.

This study seeks to serve as a foundation for patients, families, payers, providers, researchers, decisionmakers, and others dealing with dementia to prioritize, plan, implement, and evaluate policy changes to improve long-term dementia care. RAND researchers also identified areas in which more study would be beneficial, including applied research on delivery of dementia long-term services and supports, costs and quality of dementia care under nurse-delegation programs, long-term services and supports financing solutions for the U.S. government and those with dementia, impact of Medicare reforms on dementia care, and uptake of private long-term care insurance and consumers' understanding of Health Insurance Portability and Accountability Act tax incentives.

This report is part of the RAND Corporation research brief series. RAND research briefs present policy-oriented summaries of individual published, peer-reviewed documents or of a body of published work.

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