4

Transforming the Role of Payment System Incentives to Improve Quality

OPPORTUNITIES TO ALIGN PAYMENT WITH IMPROVING CARE FOR ALZHEIMER’S DISEASE

Tisamarie Sherry, deputy assistant secretary for Behavioral Health, Disability, and Aging Policy in the U.S. Department of Health and Human Services (HHS) Office of the Assistant Secretary for Planning and Evaluation (ASPE), discussed the payment landscape for people with ADRD; how this influences care delivery and quality; and promising payment models. The Office of Behavioral Health, Disability, and Aging Policy coordinates dementia care, research, and policy and oversees implementation of the National Alzheimer’s Project Act, which maintains the National Plan to Address Alzheimer’s Disease.

Sherry said that two-thirds of people living with ADRD live at home and receive care and services in their home from home health workers and unpaid family caregivers, as well as care in ambulatory care (outpatient) settings. The care settings for the remaining one-third of people with ADRD are approximately evenly divided between nursing homes and other supportive settings, such as assisted living facilities (Chi et al., 2019). Ninety-five percent of these individuals are enrolled in Medicare, and 24 percent have dual Medicare/Medicaid eligibility (Garfield et al., 2015). Nonetheless, families pay 70 percent of the lifetime expenditures for ADRD care in the form of out-of-pocket care expenses and unpaid caregiving (Jutkowitz et al., 2017).

She explained that the two public payers, Medicare and Medicaid, cover different types of ADRD care and services. Medicare pays for ambulatory care, hospital care, post-acute care, physical therapy (PT) and occupational therapy (OT), and hospice care. Medicaid’s major role is in financing long-term nurs-

ing home stays as well as home- and community-based services (HCBS). Medicaid also serves as a payer of last resort for hospital and ambulatory care.¹ Care settings and payers change over the course of ADRD progression. As people with ADRD age and their disease progresses, more of those people transition from residing at home to institutional settings. Seventy-five percent of people over age 80 with ADRD reside in nursing homes (Alzheimer’s Association, 2022). Medicaid becomes the dominant source of reimbursement for care for people with ADRD as they exhaust their financial resources.

Sherry noted that the features of our current payment system have a number of implications for ADRD care and the quality of that care. Payment is typically tied to specific clinical settings. This creates complications for coordination of care as people transition among care settings (e.g., from hospital to skilled nursing facility). It also creates a funding gap for care provided in a patient’s home, where most people living with ADRD actually receive care and prefer to receive care (Grabowski, 2007; NASEM, 2022). She explained that there is also fragmentation in care across payers, which contributes to challenges in coordinating person-centered care for patients with ADRD and aligning incentives across the two public payers. For example, Medicaid covers long-term nursing home care, whereas Medicare, which typically has a higher reimbursement rate for care, covers hospital and post-acute care. This creates a condition in which nursing homes are incentivized to send long-term residents to the hospital in order to receive Medicare’s higher reimbursement rate for care provided at the nursing home upon the patient’s return to the nursing home because that can be categorized as post-acute care.

Sherry explained that while state Medicaid plans are required to cover nursing homes, coverage of HCBS is optional. Therefore, Medicaid-supported HCBS programs often have multiple barriers to access, such as stringent qualification requirements; limited enrollment capacity, which often leads to lengthy waiting lists; and time limitations (Johnson and Lindner, 2016; Ryan and Edwards, 2015). She noted that over the last few decades, rebalancing efforts from institutional care to HCBS and the increasing number of assisted living facilities have gradually decreased the number of people with Medicare or private insurance residing in nursing homes. This has combined with a more recent pandemic-related decline in patients seeking facility-based post-acute care to contribute to a shift in the populations of patients residing in nursing homes toward more patients that rely on Medicaid. Those patients also often have more complex medical needs, but their care is reimbursed at a lower rate than that of a patient covered by Medicare or private insurance (Cornell et al., 2020; Werner and Bressman, 2021). She added that over time this has resulted in nursing

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¹ See https://www.cms.gov/Outreach-and-Education/American-Indian-Alaska-Native/AIAN/LTSS-TA-Center/info/hcbs (accessed July 25, 2022).

homes caring for more complicated patients, but having fewer resources with which to provide that care.

Sherry noted that receiving a timely ADRD diagnosis is important for planning as well as access to therapy and clinical trials. However, fewer than half of the people living with ADRD receive a physician’s diagnosis, particularly in the early stages of disease (Lang et al., 2017; NASEM, 2022; Savva and Arthur, 2015). Health care providers have cited payment-related barriers to early diagnosis, such as insufficient time in their clinical workflow to perform cognitive assessments (Korthauer et al., 2021). Another challenge for people with ADRD is difficulty transitioning between care settings. People living with ADRD, particularly those with unmet caregiver needs, are at higher risk of readmission and mortality following hospitalization (Anderson et al., 2022; Knox et al., 2020a, 2020b). She explained that while providing caregiver support and home-based support for people living with ADRD during care transitions is beneficial, the gap in financing for these services makes this difficult. Patients with ADRD will have increasing care needs as their disease progresses. However, their caregivers often face burnout (Hiyoshi-Taniguchi et al., 2018).

The home-based care financing gap creates barriers to supplementing family caregivers with additional paid caregivers. The course of ADRD does not fit the trajectory of the Medicare hospice benefit for end-of-life care. The life span of those with late-stage ADRD can be difficult to predict. Additionally, Medicare disenrollment rates are high among patients with late-stage ADRD. This suggests that the Medicare hospice benefit frequently does not meet these patients’ needs (De Vleminck et al., 2018). The combined effect of the payment landscape and the clinical features of ADRD leads to a substantial reliance on unpaid caregivers, high out-of-pocket spending, and increased reliance on Medicaid-financed nursing home care.

Sherry cited three elements of payment models that have shown promise for ADRD care:

• Person-centered payment, which follows the patient across care settings (Boustani et al., 2019);
• Improved integration and coordination across payers to better align incentives for quality improvement (NASEM, 2022); and
• Value-based payment, including both accountability for quality and the flexibility to reimburse for valuable services that are not typically covered by traditional insurance, such as caregiver training and community-based supports.

Sherry described current payment tools that could support integrating those elements (Table 4-1). These include adding value-based payment incentives to existing setting-specific payment schemes, such as the Medicare Merit-

TABLE 4-1 Existing Payment Models That Include Elements with Promise to Improve Quality of Care for People with ADRD

SOURCE: Presented by Tisamarie Sherry on May 23, 2022 the workshop Mechanisms for Organizational Behavior Change to Address the Needs of People Living with Alzheimer’s Disease and Related Dementias.

based Incentive Payment System and value-based incentives that coordinate care across settings, such as the Medicare Shared Savings Program.

Other opportunities include existing person-centered payment models, some of which offer support for long-term care, such as Medicaid Managed Long-Term Services and Supports (LTSS). Some models also reimburse services from unpaid family caregivers, such as Medicaid Consumer Self-Direction HCBS waivers. She also noted current person-centered models, which are primarily directed at individuals that are dually eligible that coordinate across payers. CMS is also currently evaluating the Medicare Advantage Value-Based Insurance Design (VBID) Hospice Benefit for end-of-life care.

Sherry next described several research needs to determine how to better align payment policy with quality and outcomes for the care of people living with ADRD. More evidence is needed about the effects of value-based payment or integrated care programs (with the exception of the Program of All-Inclusive Care for the Elderly [PACE])² on outcomes for people with ADRD (Feng et al., 2021). There is also little evidence on the role of payment in quality of care in assisted living facilities. She added that while care provided in assisted living facilities is less affected by public funding models because that

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² Program of All-inclusive Care for the Elderly, see: https://www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-Medicaid-Coordination-Office/PACE/PACE (accessed September 29, 2022).

care is mostly funded by private insurers, those patients receive hospital and ambulatory care that is paid for by Medicare. Many of those patients will transition to relying on Medicaid to pay for their care. States would also benefit from more evidence to guide Medicaid HCBS program design. This includes investigating how the various HCBS waiver designs influence the delivery of quality care and outcomes for people with ADRD (Wang et al., 2020). She also highlighted the need to evaluate the effects of different payment models on equitable access and treatment, particularly for people with ADRD from historically marginalized communities (NASEM, 2022). Additional research is also needed to identify which payment models are most likely to improve the quality of end-of-life care for people with ADRD.

Sherry noted that reforming the payment system is not sufficient to improve quality of care for people with ADRD. While the PACE model contains many of the desired elements for delivery of quality ADRD care, its uptake has been limited in part by high regulatory barriers. Medicare adopted Cognitive Assessment and Care Plan billing codes in 2017 to incentivize providers to perform a cognitive assessment during a patient’s annual wellness exam, which should improve the rate of early diagnosis. However, the increase in cognitive assessments has been much lower than anticipated (Li et al., 2021). Sherry said a key research need is to determine the optimal combination of payment, delivery system, and regulatory changes.

PAYMENT MODELS FOR POPULATIONS WITH SPECIAL NEEDS

Amol Navathe, associate director of the Penn Center for Health Incentives and Behavioral Economics at University of Pennsylvania, began by noting that patients with ADRD are a population with special needs. His presentation offered a conceptual grounding for selecting among existing payment models for special needs populations. He organized existing payment models into four categories:

1. Episode-based, which is primarily focused on episodes of care in the hospital or specialty care setting;
2. Population-based, such as accountable care organizations (ACOs) or shared savings programs that manage all care for a population;
3. Full capitation, as used in Medicare Advantage; and
4. Comprehensive primary care, which is designed to motivate innovation in primary care for patients with high needs.

Navathe said that none of these models adequately meets the needs of patients with ADRD. This is largely because people living with ADRD have

unique, relatively intense, and longitudinal care needs over the course of their disease. He added that research evidence to support any of those models for financing ADRD care is very limited.

Navathe explained that patients with ADRD receive a combination of non-ADRD- and ADRD-specific care, and it is important not to conflate the two. There is evidence on how some payment models affect non-ADRD care for conditions that are not uncommon to patients with ADRD. Research findings have demonstrated that bundled payment models for medical conditions, such as congestive heart failure, maintained the quality of care for vulnerable individuals, and participation in an ACO was associated with fewer hospitalizations among individuals living in long-term care (Chang et al., 2021; Maughan et al., 2019). However, few studies examine how these models affect the longitudinal, ADRD-related care and disease trajectory of individuals with ADRD. Initial consideration of that question has revealed notable challenges.

He described a study that suggested ACOs may avoid patients with ADRD due to the intensity of spending and care, and this bias can interact with racial, social, and ethnic disparities (Chang et al., 2019). While evidence suggests that there may be better end-of-life care for patients with ADRD enrolled in Medicare Advantage plans, such as fewer deaths in-hospital and less mechanical ventilation, this is counterbalanced by concerns around selection. The population of patients with ADRD also presents technical challenges in areas such as risk adjustment. Navathe urged researchers and clinicians to recognize that changes in payment models affect ADRD care and non-ADRD care differently, even within the same population. Navathe explained that in earlier efforts, changing payments did not yield the desired changes in organizational models. He suggested that instead of starting with payments, change efforts should begin by examining the organizational model and considering how to best deliver care in the context of that model. Organizational models that promote high-quality ADRD care should incorporate support for caregivers, medication management, self-management, psychosocial interventions, and longitudinality.

Navathe noted that salience is a challenge for population health payment models. Salience in this case refers to the need to engage clinicians that are providing adequate care to people living with ADRD. Engaging these physicians requires a model that is specialized but not overly engineered. Navathe suggested a baseline population payment model approach, which would invest in care infrastructure, supplemented with episodic care. This approach would establish a payment baseline with additional reimbursement for episodic care. The model could be tailored to the needs of individuals with ADRD but salient enough to engage providers in redesigning care to incorporate disease-specific elements. Navathe cautioned that more research is needed to establish a strong link between payment models and organizational care delivery.

SYSTEMIC CONSIDERATIONS FOR IMPROVING QUALITY OF CARE AND SUPPORT FOR PEOPLE WITH ADRD AND THEIR CAREGIVERS

Bruce Vladeck, senior advisor to the Greater New York Hospital Association and LiveOnNY, began by emphasizing that in order to improve care for people with ADRD, reform efforts should go beyond payment policy. He argued that the notion of payment system incentives reflects an exaggerated view of the ability of payment mechanisms to actually affect the way care is delivered. Vladeck was struck by Reuben’s comment that “hospitals don’t get paid for adoption [of the UCLA Alzheimer’s and Dementia Care Model].” He explained that hospitals could use funds they receive from Medicare to implement care models such as the UCLA Alzheimer’s and Dementia Care Model. Medicare pays hospitals a lump sum that is based on a patient’s diagnosis and complications. That money is allocated at the discretion of the hospital, provided it meets regulatory and professional standards. The hospital, for example, could choose to use some of those funds to support employing a nurse practitioner to manage care coordination for patients with ADRD. He suggested that payment in terms of adequate reimbursement may not be a barrier to changing patterns of care for patients with ADRD. Payment under the current model may serve as an incentive for hospitals to change patterns of care for people with ADRD in some areas, such as reducing their length of stay in the hospital.

Vladeck explained that there are three dimensions to consider when determining how to reimburse for care and services. The three dimensions are the source of payment (who pays), the amount of payment (how much is paid), and the payment mechanism (how providers are paid). He suggested that the overall health care system and individual health care organizations should give greater consideration to payment mechanisms, particularly in reference to care for patients with ADRD. Currently, Medicaid reimbursement is the primary public payment mechanism for long-term care. He noted that overreliance on Medicaid serves as a barrier to improving quality of care for people with ADRD. Each state’s Medicaid program funds are controlled by the respective state’s budget office. State budget offices are usually under a state constitutional requirement for a balanced budget. This leaves funding for state Medicaid vulnerable to political pressure, and people with Alzheimer’s and their families are usually not the most politically empowered constituents of the state budget offices.

Vladeck noted that there are ways to improve quality of care without financial incentives. He offered an example from his time as a member of the quality improvement committee of a large nonprofit health care system. The health care system decided to adopt a series of quality recommendations

developed by the Institute for Healthcare Improvement (IHI) before Medicare began incentivizing adoption. He said the committee made this decision based on its belief that “good care should not be any more expensive than bad care.” Medicare does not provide additional reimbursement to age-friendly hospitals for improving the quality of care for older adult patients. However, that has not prevented those hospitals from implementing those programs. Vladeck posited that health care organizations want to improve care for their patients, and behavioral evidence indicates that they are not motivated primarily by money.

Vladeck suggested that the effective approaches for restructuring the health care system’s approach to service delivery should be considered prior to engaging new payment mechanisms. A reworked system needs to accommodate the three main contexts in which people with ADRD receive care and services: hospitals and primary care practices, nursing homes, and home care. Primary care physicians may require incentives to improve initial assessment of patients with possible cognitive impairment. He said this could be accomplished through a combination of training, payment, and professional standards. Many individuals in the later stages of ADRD are best cared for in the second context, nursing homes. However, Vladeck, who served on the committee for a previous Institute of Medicine (IOM) report about quality of care in nursing homes 35 years ago, noted the findings and recommendations of the recent National Academies nursing home consensus study report were “distressingly similar” to those from that 1986 IOM report (IOM, 1986; NASEM, 2022). He added that while the quality issues in nursing homes have remained unchanged, reimbursements per resident are “three to four times” higher than they were 35 years ago. Vladeck said the nursing home industry needs systemic reform before it can be seriously considered for value-based payment models.

Seventy-five percent of people with ADRD receive care in the third context, their home. This is where an overwhelming majority of those patients prefer to reside and receive care. However, he added, there is a shortage of home care workers; a lack of effective quality standards; and no organizational infrastructure with which to manage issues of human resources, payment, incentives, quality, oversight, and customer support. The private home care industry is inadequately regulated. Medicaid pays large amounts of administrative costs to employment agencies that provide home care aides to patients. Vladeck noted that most reimbursed in-home care for people with advanced ADRD is provided by women of color, including many immigrants. Those individuals are underpaid and receive few or no benefits, training, or career opportunities, which is both an equity issue and a quality-of-care issue. He said that improving care for people living with ADRD requires addressing the needs, training, management, and supervision of the home health workforce.

PAYING (ATTENTION TO) UNPAID CAREGIVERS

Emily Largent, Emanuel and Robert Hart Assistant Professor of Medical Ethics and Health Policy at the University of Pennsylvania, began by noting that despite the long history of unpaid caregiving, there is limited published research in the literature about unpaid caregivers, who are frequently family members, for people with ADRD.³ Family members often manage, finance, and provide care for people with ADRD, who in turn worry about burdening their families. Largent noted two dimensions of inequity that make ADRD more burdensome than other illnesses. ADRD presents greater financial risk and hardship to families than other illnesses. Also, there are considerable disparities within dementia care based on a patient’s ability to pay. She added that personal long-term planning frequently cannot compensate for the structural problems within the public insurance systems related to financing ADRD care for older adults.

The overreliance on unpaid caregivers is a national problem, said Largent. In 2021, over 11 million Americans provided unpaid care for people with ADRD, contributing an estimated 16 billion hours valued at $271.6 billion (Alzheimer’s Association, 2022). She opined that while efforts have been directed to calculating the cost of ADRD care in terms of the market value of these hours and labeling it as a public health crisis, a similar level of effort has not been directed at developing effective solutions to reduce the pressures placed on caregivers. Family caregivers also play a significant role in long-term care facilities, where they serve as an “invisible workforce” attending to their relatives (Coe and Werner, 2022). This work often includes tasks of feeding, bathing, dressing, grooming, and toileting, as well as care for the mind. Family caregivers make countless care and treatment decisions for the person with ADRD and function as repositories of knowledge about that person’s needs and interests, connecting them to their past self. She added that most of the emotional, physical, and economic costs of caregiving for people living with ADRD are borne by women, and particularly women of color. She noted that both paid and unpaid caregiving raises ethical issues around gender, race, ethnicity, and class.

Largent said the COVID-19 pandemic has provided a demonstration of what happens when care is compromised in an already fragile system. Since the onset of the pandemic, caregivers in both community and long-term care settings have experienced negative health outcomes and role strain. Caregivers

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³ Largent calculated the number of documents published per year that contain terms Alzheimer’s disease, Alzheimer’s, or Alzheimer and caregiver, as found in the PubMed online database. Similar results were found in Scopus, Web of Science, and in Google texts.

have had increased rates of anxiety and depression. Concurrently, many people living with ADRD have experienced worsening of cognitive and behavioral symptoms and increased falls. There was also a prolonged period during the first year of the pandemic during which families of patients in nursing homes and other long-term care facilities were unable to visit or feed them, leading to weight loss and an attenuation of the family bond. Largent said that the COVID-19 pandemic has revealed the tenuousness of informal caregiving for people with ADRD, even in normal times, and underscores the need for change.

Caregiver role strain and role gain can affect the well-being of both the caregiver and the person living with ADRD (Rapp and Chao, 2000). She explained that caregiver role strain refers to difficulty meeting the demands of the caregiver role. Caregiver role gain refers to a sense of personal enrichment related to the caregiving role. Increased role strain has been associated with increased risk of abuse and neglect. It is therefore important to mitigate the objective demands of the caregiving role to decrease role strain, as well as to increase role gain by helping caregivers positively frame their interpretation of these demands and their abilities to meet them. She also cautioned against placing an overemphasis on resilience that can put undue pressure on caregivers to persist in an unjust system.

Largent explained that any intervention at the level of the health care system to improve quality of care for people with ADRD should be organized around the dyad of the person with ADRD and their caregiver to maximize the well-being of both parties. She described several key components of that approach. There should be clear documentation in the EHR of the name and contact information for the person with ADRD’s caregiver. This would be particularly helpful in recruiting for pragmatic trials specific to patients with ADRD and their caregivers. Best practices should be developed for communication involving the clinician, caregiver, and person with ADRD during clinic visits, including identifying scheduling strategies to allow for adequate appointment duration. Unpaid caregivers should be provided coaching and counseling to equip them with necessary skills, such as skin care and strategies to address common behavioral issues. Additional necessary components that Largent cited include reimbursement for social workers; increased access to respite care; collaborative ADRD care models; and ADRD care navigators, particularly to support care transitions. She added that health care facilities, including hospitals, should revise visitor policies to recognize that caregivers are not typical visitors, they are part of the patient care workforce and often serve as “the extended mind” of a person living with ADRD.

Largent noted that people with ADRD who are un-befriended (those without family, friends, or other unpaid caregivers) are particularly vulnerable to poor care and poor outcomes. She added that people with advanced ADRD

that reside in nursing homes who have no visitors usually receive lower quality of care than those with visitors. She emphasized that more research is needed to understand how best to address the unique care needs of these individuals.

DISCUSSION

Addressing Financial Burdens to Caregivers

Richard Frank noted the financial disruptions associated with caregiving for people with ADRD and asked panelists to discuss options for designing more social insurance programs to support caregivers, such as paid family leave policies or provisions in Social Security Administration (SSA) disability insurance. In response, Vladeck said that there have been many such proposals, but they have been superseded by other priorities, such as childcare. Navathe articulated several challenges to Frank’s proposal. He began by explaining that payment reform models, such as ACOs and Medicare Advantage, seek to yield improved health outcomes in a manner that is cost neutral for the government and taxpayers. Therefore, a program to support caregivers would likely require finding a different funding source. Second, Navathe cautioned against medicalizing the provision of social services for people at high risk for poor medical outcomes and their families and then evaluating these services based on their cost-effectiveness and their effect on the medical system. He added that those commonly applied evaluation approaches could be problematic for quantifying the effect of social service supports. Navathe noted that success of a caregiver support program might be judged differently depending on whether it was specifically designed for caregivers of people with ADRD or applied more broadly.

Sherry noted that Medicaid HCBS consumer self-direction waivers provide some resources for unpaid family caregivers. There has been increased uptake of this program during the COVID-19 pandemic as people sought to keep family members out of institutions. The limited labor supply of unpaid caregivers is a significant constraint for this program. Many family members cannot provide constant care, particularly as ADRD progresses. Therefore the need remains for mechanisms to support paid caregivers who can supplement unpaid care. She added that existing waiver programs (which vary state by state) could not adequately reimburse family caregivers for constant care, even if they could provide it.

Vladeck noted that if a person with ADRD requires constant care that cannot be provided by an unpaid caregiver, care in a nursing home is less expensive than paying for constant home care. He suggested a possible approach could be an incentive-based payment system that would provide a percentage of the cost of nursing home care to families caring for Medicaid--

eligible individuals at home. However, such a proposal would exacerbate the inequities experienced by people with low incomes that are still above the income level for Medicaid eligibility, he added.

Designing a Family Caregiving Support Program

Frank asked the group to discuss the research needs for designing a financial program to support family caregiving for people with ADRD. Navathe suggested one approach could be to conduct demonstration projects in which health plans, clinician groups, or health systems provide funding for caregiver support. Then, test these models rigorously to ensure they are meeting patient and caregiver needs. This would be a longitudinal, multi-year project. Navathe described several requirements for this approach, including identifying the critical elements of caregiving, determining how those critical elements connect with the medical enterprise care model, testing financing approaches for facilitating payments to caregivers, and developing assessment mechanisms for valuation and impact. Sherry added that there is considerable heterogeneity in the goals and preferences of patients and their families, which may change over the trajectory of disease. She said that one starting point for researchers may be to identify universal goals for both patients and caregivers, and then investigate at what point in the trajectory of ADRD the goals fail to align. An example research question could be, what key antecedents lead to an inability to remain at home? Sherry listed several possible factors that could contribute to the divergence of goals for people with ADRD and their caregivers. Those included behavioral or psychological symptoms, burnout, depression, labor supply, and housing. She noted that there is a substantial volume of research about those factors published in the literature. She suggested examining the existing evidence for opportunities to integrate those findings and identify potential solutions that can inform actionable policy recommendations.

Institutionalization and De-institutionalization Challenges

Hollmann and Vladeck briefly discussed the roles of institutionalization and deinstitutionalization in care models for patients with ADRD. Hollmann suggested modeling the effects of transferring financing from institutional care to home care for people with ADRD. He added that any modeling should incorporate characteristics of the desired conditions, such as accounting for better wages for nursing home staff, instead of current conditions.

Vladeck recounted the example of deinstitutionalization at New York’s Willowbrook facility. The children with developmental disabilities who were residents at Willowbrook and were deinstitutionalized are now adults with developmental disabilities that are also experiencing a range of medical prob-

lems as they age, including early-onset dementia. Those individuals frequently cannot be cared for adequately in community facilities so they become residents in nursing homes. This adds to the multidimensional diversity and diversity of needs of people with ADRD residing in nursing homes. He added that adapting to the diversity in the population of people with ADRD and the evolution of that diversity over time will add complexity to the issue of providing adequate and equitable ADRD treatment.

Scaling

Frank noted that several effective care models for people with ADRD described by speakers were examples of “expensive boutique operations,” and asked the group to discuss the essential components of those expensive small models that could be scaled up to develop a workable and effective large-scale model. Vladeck suggested developing institutional models and creating regionally based centers that could translate the lessons from smaller-scale programs into operational practices and lobby for the adjustments in payment policy needed to make these models more widely available. Sherry added that regional collaborative centers could offer the opportunity to marshal other types of resources and build from the community up, bringing together components that are outside the medical system but still critical to the success of the care models.

Drawing on his prior work in behavioral economics and science, Navathe noted that the decrease in effect size that is observed when efforts are made to generalize a boutique model is a common and challenging problem. He noted that in behavioral science this is referred to as the voltage effect.⁴ Innovation should take place in smaller settings because the unique nature and intensity of the needs of people with ADRD are difficult to generalize. This makes large-scale efforts at innovation likely to fail. However, while small-scale innovation is needed to generate the best care models, there should be a deliberate effort to identify the common elements across successful models. He noted that support for caregivers is an advantageous feature to add to a care model because it contributes to a patient-centered approach and is scalable. He also noted that it could be challenging to incorporate that component because caregiver support is not a single service.

Sherry added that several elements of evidence-based ADRD care models are similar to those for individuals with other complex medical conditions and long-term care needs. She suggested identifying common elements in the two types of models as well as identifying modifications needed to address the

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⁴ See https://www.penguinrandomhouse.com/books/672117/the-voltage-effect-by-john-a-list/ (accessed July 16, 2022).

distinctive needs of people living with ADRD. She said that this approach may facilitate scaling, because a large health care delivery organization may be more willing to invest in a new care model if it is designed to serve a broader patient population.

Resources for Information About Quality

Fulmer recommended four resources that represent opportunities to enhance the evidence base regarding quality of care for people living with ADRD and support for their caregivers:

• The Family Caregiver Alliance,⁵
• HRSA’s Geriatrics Workforce Enhancement Program,⁶
• The Veterans Administration,⁷ and
• The Administration for Community Living.⁸

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⁵ See https://www.caregiver.org (accessed July 16, 2022).

⁶ See https://www.americangeriatrics.org/programs/gwep-coordinating-center (accessed July 16, 2022).

⁷ See https://www.caregiver.va.gov/index.asp (accessed July 16, 2022).

⁸ See https://acl.gov (accessed July 16, 2022).