Improving Dementia Long-Term Care

A Policy Blueprint

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

This Article

RAND Health Quarterly, 2014; 4(2):2

Abstract

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.

For more information, see RAND RR-597 at https://www.rand.org/pubs/research_reports/RR597.html

Full Text

Dementia: A Looming Epidemic

Today, roughly 15 percent of Americans older than 70—an estimated 3.8 million people—are living with dementia [1]. By 2050, an estimated 13.8 million Americans age 65 and older will have Alzheimer's disease [2], the most common form of dementia. Alzheimer's disease is the sixth leading cause of death in the United States and the fifth leading cause of death for those age 65 and older [3]. It is the only cause of death among the top ten in the United States for which there is no cure, no form of prevention, and no means of slowing its progression [4]. This public health burden increases when one considers the generally long duration of disability and dependence associated with the disease that requires long-term services and supports (LTSS). The burden of disease for Alzheimer's disease, measured by disability-adjusted life years, has also risen more than any other disease in the United States from 1990 to 2010 [5, 6].

Alzheimer's disease and related dementias are among the most costly of medical conditions. In 2013, a groundbreaking RAND study was the first to quantify the annual economic costs solely attributable to dementia in the United States [1]. The study estimated these costs at somewhere between $159 billion to $215 billion annually—sums that are similar to or greater than the costs attributable to heart disease or cancer. Moreover, these costs could more than double by 2040. The vast majority of costs associated with dementia among those 70 or older are attributable to LTSS rather than to medical services. Yet the LTSS system has typically not been well aligned with the needs of persons with dementia.

This report focuses on the LTSS system and its intersection with dementia care. Our purpose is to provide our recommendations for the highest-impact policy options. We also categorize them by the stakeholder groups that would have primary responsibility for implementing them to assist stakeholders in organizing a plan of action.

The Current State of Dementia LTSS

Service Delivery

LTSS can be provided by formal providers or informal caregivers. Informal care, which we refer to as family care, is unpaid care that is usually in the form of assistance from a relative or friend. The vast majority of LTSS—for all conditions, not just dementia—are provided by informal caregivers: as much as 80 percent, according to one estimate [7]. Although timely and accurate detection and diagnosis of dementia do not always occur within the scope of LTSS, they are critical for effective planning for dementia care and ensuring the quality of dementia care. However, unofficial estimates peg the proportion of those with dementia who are formally diagnosed at roughly half [8–10]. Furthermore, studies report that as few as half of those with dementia and their families receive support or guidance about its prognosis [11, 12], and services available to them, following a diagnosis [13, 14].

An important trend in the delivery of services by formal caregivers over the past 20 years has been a deliberate “rebalancing” of care away from such institutional settings as nursing homes and toward home- and community-based settings. This shift is reflected in the share of Medicaid spending for home- and community-based services (HCBS), which doubled between 1995 and 2011 [15] and is growing at a much faster rate than spending on institutional services. However, it is uncertain how this trend specifically affects dementia care.

There are several critical gaps and challenges in LTSS service delivery. While the current LTSS landscape for dementia varies from state to state—largely because of differences in state Medicaid programs, which finance the majority of LTSS that are not paid for out of pocket—some general themes emerge on a national level.

As suggested above, detection and diagnosis remain problematic, and the use of biomarkers and other cognitive assessment tools, though showing signs of progress, remains in flux. The high cost of care also continues to pose a challenge. Publicly financed home- or community-based services provided by formal caregivers remain inaccessible for middle-income families because of Medicaid eligibility requirements. These middle-income families pay for these services out of pocket. The percentage of middle-class families that are expected to spend down their assets to Medicaid eligibility levels is projected to increase in the future, given the demographic changes stemming from the aging of the baby boomers and the dearth of family caregivers available to care for them [16]. Persons with dementia frequently experience transitions across the stages of dementia, including obtaining the initial diagnosis, advanced planning for financial concerns and health care considerations, driving cessation, managing behavioral symptoms, reduced decisionmaking capacity, changes in care settings, and preparing for the end of life. However, the settings and facilities that provide LTSS during these transitions frequently operate in silos with no overlap in or coordination across data systems.

Workforce

The dementia workforce is composed of both paid providers and family caregivers. More than 15 million Americans currently provide family care to family members or friends with dementia [5]. These informal caregivers, often referred to as family caregivers [17], typically shoulder a heavy burden: Nearly 40 percent reported quitting jobs or reducing work hours to care for a family member with dementia [18]. Many of these caregivers also experience negative physical and mental health effects [18]. Women in particular are more likely than men to suffer negative employment and health consequences [19]. Moreover, family caregivers frequently report that they are inadequately educated about the trajectory of dementia and community resources after a dementia diagnosis has been made [20, 21].

Demographic trends suggest that the current heavy reliance on family caregiving is unsustainable. As the median age of the U.S. population, including baby boomers, trends upward, there will be a growing imbalance between the number of people needing care and family caregivers available to deliver it. To illustrate, the AARP Public Policy Institute estimates that the ratio of caregivers aged 45–64 to each person aged 80 and older who needs LTSS will decline from 7:1 in 2010 to less than 3:1 in 2050 [16].

With respect to formal care, the majority of those who provide LTSS are direct care workers, including nursing aides, home health aides, and personal- or home-care aides [2]. Inadequate training for dementia in the direct care workforce has been identified as a main contributor to poor quality of life, poor quality of care, abuse, and neglect in nursing homes [22, 23]. This workforce would benefit substantially from training in how to manage behavioral symptoms related to dementia.

Initiatives under way to improve training in dementia and elder care are a first step toward addressing this need [24, 25]. Another significant gap in the LTSS workforce stems from the growing imbalance between the demand for—and supply of—qualified, paid workers. This shortage results from high turnover and difficulty attracting qualified workers. Shortfalls in this workforce are often filled via the “gray market,” meaning that untrained, low-cost caregivers are hired, leaving older adults vulnerable to poor or unregulated care. Compounding this problem: Certification requirements for paraprofessional caregivers are low to nonexistent in most states, and federal requirements are minimal (less than two weeks of training).

Financing

The costs of long-term paid caregiving for persons with dementia are high, and they increase sharply as cognitive impairment worsens. According to RAND estimates, the expense for home care borne by families (valued in terms of the replacement cost if such care was purchased in the home care market) accounts for approximately 50 percent of the costs of dementia care [1]. Furthermore, this estimate excludes economic costs associated with the caregiver's emotional well-being, health status, work productivity, foregone leisure activities, and increased risk of injury or death.

With respect to paid LTSS, Medicaid is the largest payer. Medicaid can cover nursing home care and paid care provided in the home or community, as well as assistance with personal care. In contrast, Medicare finances only hospice costs and a portion of short-stay, post-acute care for Medicare beneficiaries [7, 16, 26, 27]. However, Medicaid eligibility rules in many states require that individuals have assets no greater than $2,000. This restriction results in significant gaps in risk protection from high LTSS costs. People with adequate resources who plan early enough turn to private long-term care (LTC) insurance or out-of-pocket resources for financing, while lower-income individuals are covered through Medicaid, leaving the middle-income population at greatest risk for significant and possibly catastrophic LTSS cost with no readily available resources to finance their long-term dementia care. Inadequate personal savings for LTSS may increase the proportion of the population that risk impoverishing themselves and depending on Medicaid coverage. Programs to address this gap—such as the LTC State Partnership Program, currently available in 31 states to promote the purchase of private LTC coverage—did not increase the uptake of LTC coverage as much as expected [28], and private insurance companies continue to struggle to get individuals to buy private LTC policies. At the same time, the costs of LTC policies continue to rise. In 2013, the federal Commission on Long-Term Care outlined several alternative mechanisms to address financing for LTSS but failed to reach consensus about the best financing approach. The Bipartisan Policy Center currently has an initiative to develop a plan for a sustainable means of financing and delivering LTSS and will issue policy recommendations in late 2014 for all LTSS, regardless of disease or condition.

Policy Options at the Intersection of LTSS and Dementia

Approach

We first reviewed four publicly available national plans and reports for strengthening LTSS and dementia care. All of these plans and reports have outlined strategies either for dementia [29–31] or for LTSS [32, 33], but none have focused exclusively on their interrelationship. In addition, many of the strategies apply a top-down approach in which federal agencies are mainly held responsible for implementing the strategies. In our approach, we identified options through engagement with a range of stakeholders from federal, state, and local levels, including patients, the public, purchasers, formal and family providers, public and private payers, policymakers, and researchers. This approach is necessary to involve stakeholders in a continuous process to more effectively move policy forward. The result was a list of 38 priority policy options grouped into three categories: service delivery, workforce, and financing. This three-domain framework is the same used by the Commission on Long-Term Care.

To qualitatively determine which of the 38 dementia LTSS policy options were the most promising, we evaluated these 38 options against 14 impact, equity, and feasibility criteria and summarized their impact (high or low), their feasibility (high or low), and the stakeholders responsible for or affected by the policy option.

Priority Policy Options

We recommend that the 25 highest-impact policy options (Table 1) should be considered for implementation immediately. Although our evaluation resulted in 25 priority policy options, 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. One exception in which options conflict with each other and cannot be undertaken simultaneously is the two national LTSS financing system options to either create a national, voluntary opt-out public-private partnership insurance program or to adopt a national single-payer insurance system. In this case, both options were deemed as having high impact on dementia LTSS, but more research is needed to understand which of the two priority options is most feasible, for example, from a political standpoint. The 25 high-impact policy options are organized into five objectives:

  • Increase public awareness of dementia to reduce stigma and promote earlier detection of signs and symptoms.
  • Improve access to and utilization of LTSS for persons with dementia.
  • Promote high-quality, person- and family caregiver–centered care.
  • Provide better support for family caregivers of people with dementia.
  • Reduce the burden of dementia LTSS costs on individuals and families.

Table 1. 25 High-Impact Policy Options for Dementia LTSS

Policy Option Primary Stakeholders Responsible Domain
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.

Providers—formal

Policymakers—fed, st, loc

SD

Encourage providers' use of cognitive assessment tools for early dementia detection and recognition.

Providers—formal

Policymakers—fed, st, loc

Principal investigators

SD

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

Establish new and expand existing home- and community-based services (HCBS).

Providers—formal

Policymakers—fed, st

SD

Integrate web- and other technology-based services into dementia LTSS.

Providers—formal

Policymakers—fed, st

Product makers

SD

Create new and improve existing incentives for the direct care workforce.

Providers—formal

Policymakers—fed, st, loc

W

Expand nurse delegation laws in all states.

Policymakers—fed, st

W

Broaden Medicaid HCBS waiver programs, self-directed services, and states' infrastructures.

Payers—public

Policymakers—fed, st

F

Include HCBS and managed care in state Medicaid plans.

Payers—public

Policymakers—st

F

Refine Medicare post-acute care and hospice benefits.

Payers—public

Policymakers—fed

F

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.

Providers—formal

Payers—public, private

Policymakers—fed

SD

Minimize transitions and improve coordination of care across providers, settings, and stages of dementia.

Providers—formal

Policymakers—fed, st

SD

Expand financial incentives for bundled home, community, and institutional services.

Providers—formal

Payers—public, private

Policymakers—fed, st

SD

Establish cross-setting teams for persons with dementia, focused on returning the person to the community.

Providers—formal, family

Payers—public, private

Policymakers—fed, st

SD

Encourage the use of quality measurement to ensure consistent use of assessment tools for persons with dementia and their family caregivers.

Providers—formal

Payers—public, private

Policymakers—fed, st

SD

Identify persons with dementia jointly with their family caregivers during emergent, acute, and post-acute care.

Providers—formal

Product makers

SD

Standardize complementary assessment tools for persons with dementia and their family caregivers.

Providers—formal

Policymakers—fed, st

Principal investigators

SD

Create new and disseminate existing dementia best practices and training programs for professional and paraprofessional care workers.

Providers—formal

Policymakers—fed, st, loc

W

Provide specialized geriatric training to direct care professionals while in school.

Providers—formal

Policymakers—fed, st, loc

W

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.

Providers—formal

W

Offer business and individual tax incentives to promote family caregiving.

Policymakers—fed, st, loc

W

Expand financial compensation programs to family caregivers.

Payers—public, private

Policymakers—fed, st

W

Expand family-friendly workplace policies.

Purchasers

Policymakers—fed, st, loc

W

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

Link private LTC insurance to health insurance.

Payers—public, private

F

Create a national, voluntary opt-out LTC insurance program through a public-private partnership.

Payers—public, private

Policymakers—fed, st

F

Adopt a national single-payer LTC insurance system.

Payers—public

Policymakers—fed

F

NOTES: fed = federal, st = state, loc = local, SD = service delivery, W = workforce, and F = financing. Family caregivers are defined broadly and include informal caregivers who are relatives, partners, friends, or neighbors who have a significant relationship with, and who provide a broad range of assistance for, an older adult or an adult with chronic or disabling conditions [17]. Principal investigators include researchers and research funders.

Meeting each objective requires efforts across multiple sectors and by numerous stakeholders. Thus, we determined the primary stakeholders responsible for implementing these policy options. In addition, we used the same framework as the Commission on Long-Term Care and indicated which of the three domains each of the policy options falls under: service delivery, workforce, or financing.

Implementation of Policy Options

The stakeholders who are primarily responsible for carrying out the 25 priority policy options are providers, payers, and policymakers. Nonetheless, it is important to engage all stakeholders who play a supportive role or who would be affected by implementation. Patients and providers are among the stakeholders most likely to be affected by new policy, and they should therefore be engaged even when not designated to implement a policy. Cross-sector leadership for implementation can occur through multistakeholder conventions, multi-actor plans, and clear assignments of roles and responsibilities for implementation that maximize efficiency to overcome the silos that public and private payers; multiple government agencies; and multiple private, professional, and civic actors sometimes operate within.

Although some of these options are rated high for potential impact, they may face significant barriers to implementation. In some cases, the barriers are legal in nature. Existing legislation may need to be modified or removed, or new legislation may be needed to authorize the policy, as in the proposed expansion of HCBS programs. Barriers may also be operational, as in the proposed links between LTC insurance and health insurance products. Or barriers may be political, as in the expected opposition by some parties to a single-payer LTC insurance system or to a voluntary opt-out public-private partnership insurance program. Barriers to implementation, however, can change quickly, and every effort should be made to reduce or eliminate them.

Priority Research Directions

The primary objective of this report was to identify and evaluate policy options. As a byproduct of our stakeholder discussions, five priorities for future research were also identified. These research options represent stakeholders' perceptions of the most urgent research priorities and are only a subset of a longer list of research directions that should be undertaken to support the implementation of policy options outlined in this blueprint. Stakeholders suggested research investment in the following areas:

  • applied research programs on the delivery of dementia LTSS
  • costs and quality of dementia care provided through nurse delegation programs
  • LTSS financing solutions for the federal government and persons with dementia
  • impact of Medicare reforms on dementia care
  • uptake of private LTC insurance and consumer understanding of Health Insurance Portability and Accountability Act (HIPAA) tax incentives.

Comparison of the RAND Blueprint with Other Dementia or Long-Term Services and Supports National Plans and Reports

Stakeholders identified ten policy options unique to our report that did not appear in the National Plan or the three national reports. These ten unique policy options generally focused on topics that highlight challenges that may be exacerbated for dementia, including its progressive nature, the presence of difficult-to-manage behavioral symptoms, the strong dependence on family caregivers for support, and the need for financial planning because of high LTSS costs. Our findings suggest that the 25 priority policy options for dementia LTSS are in line with and further support the broader LTSS recommendations made by the Commission on Long-Term Care [32, 33]. Nevertheless, as the numbers of the U.S. older adult population and the numbers of those with dementia swell, these ten unique policy options may also be important to turn to in the near term.

Conclusion: A Blueprint for LTSS Through the Lens of Dementia Care

This blueprint provides 25 priority policy options that address challenges with (1) stigma and early detection of signs and symptoms of dementia that can affect downstream access to care and quality of care; (2) inadequate access to—and measurement of—quality LTSS; (3) fragmented delivery systems that may affect persons with dementia more severely because of the heavy reliance on services both outside and inside the traditional health care system and on family caregivers; (4) insufficient resource-finding infrastructure, employer programs, and financial resources to support family caregivers of people with dementia; and (5) insufficient public and private options to help individuals and their families deal with the potentially crushing costs associated with dementia LTSS.

Dementia presents distinctive issues within the LTSS system because of its high prevalence, progressive nature, effects on behavior and ability to self-manage care due to impaired cognitive and decisionmaking capabilities, frequency of care transitions, risk of elder abuse, high rate of comorbid health conditions, heavy reliance and resulting health impacts on caregivers, and higher costs associated with LTSS compared to other chronic conditions in late life.

The strengths of our study include the engagement of interviewees representing stakeholder perspectives from across the health care system, the evaluation of policy options across 14 criteria, and the prioritization and comparison of policy options with options recommended by other national efforts. More importantly, this is the only evaluation that places a spotlight on policy options in LTSS for dementia specifically. Despite these strengths, we note several limitations.

Future work should include convening a larger group of 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 select 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 LTSS research [34]. The qualitative rating approach we used 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, we recommend that dementia LTSS stakeholders work together to develop metrics—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. Examples of metrics may include

  • a target percentage of the estimated population with dementia that has received a diagnosis
  • a target percentage of the Medicaid-eligible diagnosed population that has a quality care plan and is receiving desired HCBS
  • cross-setting teams and person-centered care plans for a target percentage of persons with diagnosed dementia
  • dementia-specific training received by a target proportion of family caregivers within a specific time frame following a diagnosis
  • a target percentage reduction in median out-of-pocket dementia LTSS costs for persons with dementia and their families.

Process metrics may also be measured, including the extent of communication between stakeholders, the number of panel roundtable discussions that take place, the amount of research funding allocated to determine data sources, the establishment of monitoring plans for meeting metrics, and the adoption of responsibility for taking action on metrics by stakeholders across multiple sectors.

In conclusion, it is our hope that this research will highlight the need for stakeholders to focus on dementia LTSS policies and will serve as the foundation for a larger group of stakeholders to build consensus around the dementia LTSS policy options that should be pursued most urgently.

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The research in this study was produced within RAND Health and RAND Labor and Population, units of the RAND Corporation. This study 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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