In 2010, 15 percent of Americans older than age 70 had dementia. By 2050, the number of new dementia cases among those 65 and older is expected to double. This blueprint outlines policy options to help decisionmakers improve dementia long-term services and supports (LTSS) by promoting earlier detection, improving access to LTSS, promoting person- and caregiver-centered care, supporting caregivers, and reducing dementia LTSS costs.

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Improving Dementia Long-Term Care

A Policy Blueprint

by Regina A. Shih, Thomas W. Concannon, Jodi L. Liu, Esther M. Friedman

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Research Questions

  1. How can the nation best meet the growing long-term services and supports (LTSS) needs of persons with dementia and their caregivers?
  2. Which policy options will help improve the access to and the quality of LTSS system for persons with dementia?
  3. What are the highest-impact policy options to train, retain, and support the dementia LTSS workforce?
  4. How can the nation help reduce the burden of dementia LTSS costs on individuals and families?
  5. Which stakeholder groups are responsible for implementing each policy option?

In 2010, 15 percent of Americans older than age 70 had dementia, and the number of new dementia cases among those 65 and older is expected to double by the year 2050. As the baby boomer generation ages, many older adults will require dementia-related long-term services and supports (LTSS). This blueprint is the only national document to date that engages local, state, and national stakeholders to specifically focus on policy options at the intersection of dementia and LTSS.

The authors undertook five major tasks that resulted in a prioritized list of policy options and research directions to help decisionmakers improve the dementia LTSS delivery system, workforce, and financing. These were to (1) identify weaknesses in the LTSS system that may be particularly severe for persons with dementia; (2) review national and state strategies addressing dementia or LTSS policy; (3) identify policy options from the perspective of a diverse group of stakeholders; (4) evaluate the policy options; and (5) prioritize policy options by impact and feasibility.

Stakeholders identified 38 policy options. RAND researchers independently evaluated these options against prespecified criteria, settling on 25 priority options. These policy options can be summarized into five objectives for the dementia LTSS system: (1) increase public awareness of dementia to reduce stigma and promote earlier detection; (2) improve access to and use of LTSS; (3) promote high-quality, person- and caregiver-centered care; (4) provide better support for family caregivers of people with dementia; and (5) reduce the burden of dementia LTSS costs on individuals and families.

This policy blueprint provides a foundation upon which to build consensus among a larger set of stakeholders to set priorities and the sequencing of policy recommendations.

Key Findings

RAND identified 25 high-impact policy options covering five broad objectives to improve dementia long-term services and supports (LTSS) delivery system, workforce, and financing. Many options cannot be pursued in isolation from others and must be bundled to optimize successful implementation and maximum impact on access, quality, and utilization of LTSS.

Objective 1: Increase public awareness of dementia to reduce stigma and promote earlier detection of signs and symptoms.

  • Create specialized and targeted outreach and education programs for the public, caregivers, professional services organizations, and persons with younger-onset dementia.
  • Encourage providers' use of cognitive assessment tools for early dementia detection and recognition.

Objective 2: Improve access to and utilization of LTSS for persons with dementia.

  • Establish new and expand existing home- and community-based services (HCBS).
  • Integrate web- and other technology-based services into dementia LTSS.
  • Create new and improve existing incentives for the direct care workforce.
  • Expand nurse delegation laws in all states.
  • Broaden Medicaid HCBS waiver programs, self-directed services, and states' infrastructures.
  • Include HCBS and managed care in state Medicaid plans.
  • Refine Medicare post-acute care and hospice benefits.

Objective 3: Promote high-quality, person- and family caregiver-centered care.

  • Establish Centers of Excellence models for dementia residential care through the end of life.
  • Minimize transitions and improve coordination of care across providers, settings, and stages of dementia.
  • Expand financial incentives for bundled home, community, and institutional services.
  • Establish cross-setting teams for persons with dementia, focused on returning the person to the community.
  • Encourage the use of quality measurement to ensure consistent use of assessment tools for persons with dementia and their family caregivers.
  • Identify persons with dementia jointly with their family caregivers during emergent, acute, and post-acute care.
  • Standardize complementary assessment tools for persons with dementia and their family caregivers.
  • Create new and disseminate existing dementia best practices and training programs for professional and paraprofessional care workers.
  • Provide specialized geriatric training to direct care professionals while in school.

Objective 4: Provide better support for family caregivers of people with dementia.

  • Provide dementia-specific training and information about resources to family caregivers and volunteer groups.
  • Offer business and individual tax incentives to promote family caregiving.
  • Expand financial compensation programs to family caregivers.
  • Expand family-friendly workplace policies.

Objective 5: Reduce the burden of dementia LTSS costs on individuals and families.

  • Link private long-term care (LTC) insurance to health insurance.
  • Create a national, voluntary opt-out LTC insurance program through a public-private partnership, or adopt a national single-payer LTC insurance system.

Recommendations

  • This policy blueprint provides a foundation upon which to engage a larger group of stakeholders in a robust debate and evaluation to build consensus on the set and sequencing of policy recommendations to pursue.
  • Future work should include convening stakeholders to assign low, moderate, or high strength-of-evidence metrics to each of the 14 impact, feasibility, and equity ratings and to build consensus on how best to group and carry out priority policy options. This larger sample of stakeholders should consider whether policy options could have varied results depending on the types of dementia.
  • Future research should also undertake a stakeholder-engaged process to prioritize research needs, much like those conducted previously for long-term service and supports (LTSS) research. The qualitative rating approach used in this blueprint should be supplemented by conducting systematic literature reviews of evidence-based programs, analyses of each policy option's cost-effectiveness, and analyses using existing administrative and clinical data. These types of studies would facilitate a better understanding of the strength of evidence for each rating and relative importance of policies in terms of allocation of resources and urgency of implementation.
  • In the process of consensus-building, dementia LTSS stakeholders should also work together to develop metrics or key performance indicators of LTSS system performance for persons affected by dementia in order to monitor progressive improvements on each of the five overarching objectives.

Table of Contents

  • Chapter One

    Introduction

  • Chapter Two

    Stakeholder-Engaged Policy Identification

  • Chapter Three

    RAND Policy Evaluation and Blueprint Recommendations

The research in this report was produced within RAND Health and RAND Labor and Population, units of the RAND Corporation. This report results from the RAND Corporation's Investment in People and Ideas program. Support for this program is provided, in part, by the generosity of RAND's donors and by the fees earned on client-funded research.

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