5

Evidence on the Effect of Existing Models and Research and Innovation to Address Gaps in Data and Evidence

In this session, panelists discussed innovative programs for providing and funding care for people with Alzheimer’s disease and related dementias (ADRD).

EXISTING MODELS FOR FUNDING CARE FOR PEOPLE WITH ADRD

Julie Robison, professor of medicine, Center on Aging at the University of Connecticut School of Medicine, described two existing models of funding care for people with ADRD, Money Follows the Person (MFP) and Care of Persons with Dementia in their Environments (COPE). She began with an explanation of the CMS project Money Follows the Person (MFP). MFP aims to provide choice to individuals with ADRD regarding where to live and receive services by strengthening Medicaid’s ability to support people who want to transition out of institutions such as nursing homes or skilled nursing facilities.¹ This is done by eliminating barriers at the state level that restrict the use of Medicaid funds and strengthening the ability of Medicaid programs to provide home- and community-based services (HCBS) to these individuals. In 2008, CMS undertook an MFP demonstration that included 46 states, the District of Columbia, as well as an initiative for Native Americans. She said

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¹ See https://www.medicaid.gov/medicaid/long-term-services-supports/money-follows-person/index.html (accessed June 10, 2022).

that by 2020, over 107,000 people in the MFP demonstration projects had transitioned to community living.

MFP is a voluntary program open to people of all ages and disabilities who are eligible for Medicaid, have been in an institution for at least 90 days, and would like to transition to receiving care and supports at home. This includes people with ADRD and other neurodegenerative conditions. The MFP transition planning process is initiated when a patient, their family, or a nursing home staff member submits a referral for transition. At that point a transition team is assembled. This team includes the patient, family members, nursing home staff, regional transition coordinators, community program care managers, housing coordinators, and others, depending on the individual’s unique needs. The goal of the transition team is developing and executing a community-based, person-centered long-term service and support (LTSS) plan to coordinate the person’s care in the community. In the Connecticut MFP program, there have been over 7,000 transitions since 2009. That includes people ages 1 to 104 years with 45 percent older than 65 and 40 percent under 65 with physical disabilities. Thirteen percent of people that transitioned to home in the Connecticut program had a specific ADRD diagnosis. Twenty-five percent of the people that transitioned home identified as not White and 11 percent identified as Hispanic.

Robison studied individuals in the Connecticut MFP program for two years following their transition and found positive outcomes, which are mirrored in the national evaluation data from Mathematica (Kellett et al., 2021; Mathematica, 2017; Robison et al., 2015).² Individuals reported improved quality of life and life satisfaction following the transition. This improvement was sustained for the entire two-year follow-up period. Only 10 to12 percent of people returned to an institution in the first year. Family caregivers reported lower levels of burden than are typically observed. Robison attributed this to support in the form of a paid care plan that includes supports that supplement the caregiver’s work (Robison et al., 2021).

Robison noted several areas for improvement. Individuals had a slightly increased rate of falls and more frequent emergency department (ED) and hospital visits following transition to home (Marrero et al., 2019). She also identified systemic factors that have limited success of MFP demonstrations, including the severe HCBS workforce shortage; variation in MFP programs across states, some of which are very small and siloed; the slow pace of transition from facility to home, which can take years in some cases; and the need for more proactive identification of eligible individuals (Robison et al., 2020).

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² See https://www.mathematica.org/projects/research-and-evaluation-of-the-money-follows-the-person-mfp-demonstration-grants (accessed June 10, 2022).

She added that despite these limitations, MFP has had many success stories in Connecticut.³

Robison next explained the COPE program. COPE is designed to address the particular needs of the dyad of the person living with ADRD and their caregiver. COPE is driven by occupational therapists (OTs), who develop action plans with the caregiver and complete up to 10 home visits over the course of 16 weeks.⁴ The program also includes a home visit from a nurse practitioner who assesses dehydration, pain, and other symptoms and takes biological samples for lab tests. The nurse practitioner then conducts a followup call with the caregiver to review the results of the lab tests and coordinate communication of those results with the patient’s primary care physician. COPE was found to be efficacious in a randomized controlled trial with community-based participants (Gitlin et al., 2010).

Robison’s colleague at the University of Connecticut tested the program in the COPE CT Translational Study. This study tested the effectiveness and implementation of COPE in a real-world setting, using an existing Medicaid-funded HCBS program for older adults (Fortinsky et al., 2020). Prior to COPE, the existing HCBS program offered no services to help family caregivers improve their ADRD management skills, though approximately one third of the 16,000 clients had ADRD. Researchers observed many positive outcomes for caregivers and people living with ADRD, as well as reduced system costs (Fortinsky et al., 2020; Kellett et al., 2022; Pizzi et al., 2022). Caregivers reported substantial improvement in their ability to manage the target problem areas, with 96 percent of respondents reporting reduction or resolution of these particular target problems at the end of the intervention.

Robison noted that in order to scale up COPE, Medicare and Medicaid coverage will need to be streamlined. She also suggested that while Medicare and Medicaid currently reimburse OT and registered nurse (RN) services, a bundled payment model, such as those currently used in Medicare Advantage or ACOs, may be needed to support ancillary components, such as training, materials, and ongoing coaching. Scalability also depends on development of a network of trained OT/RN COPE providers and referral mechanisms. She added that COPE program materials need to be translated for people that do not speak English.

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³ See https://health.uconn.edu/aging/research-reports/ (accessed June 14, 2022). Each quarterly report concludes with the story of an individual MFP client.

⁴ See https://drexel.edu/cnhp/research/centers/agewell/Research-Studies/COPE/ (accessed June 14, 2022).

PACE: PROGRAM OF ALL-INCLUSIVE CARE FOR THE ELDERLY

Jennie Chin Hansen, board member of SCAN Health Plan and former chief executive officer of the American Geriatrics Society, began by discussing the Program of All-Inclusive Care for the Elderly (PACE). She explained that PACE is an integrated system for older adults who are frail. The program uses a capitated payment model. It is a community-based, coordinated care program that provides a full range of medical and non-medical services. Hansen led the PACE program in San Francisco for 25 years.⁵ PACE serves individuals residing within its service areas who are age 55 or older who are certified as needing nursing home care but who are still able to live safely in the community with support from PACE services. PACE clients have functional losses and complex health issues, with an average of 5.8 chronic comorbidities; 46 percent have ADRD. She noted that the PACE client population resembles that of nursing homes, with an average age in the late seventies to early eighties.

Individual PACE centers are small in scale, serving approximately 200 people. An important component of PACE is that the program engages an interdisciplinary team rather than individual case managers to manage care. The team includes OTs, physical therapists, recreational therapists, primary care providers, RNs, social workers, dietitians, home care coordinators, personal care attendants, and drivers. The team focuses on prevention at multiple levels and engages in a continuous process of assessment, treatment planning, service provision, and monitoring. PACE has strong core competencies that support its broader use, said Hansen. It is provider based, provider directed, and provider managed, with tightly controlled systems of care management and utilization. PACE has consistently demonstrated several positive quality indicators, including good care outcomes, high enrollee and caregiver satisfaction, and low rates of disenrollment (CMS, 2018). PACE also proved effective at mitigating COVID-19 transmission during the pandemic, with rates of infection and death approximately two-thirds lower than in skilled nursing facilities.

PACE financing is capitated and pooled, integrating payments from Medicare, Medicaid, and private payers, said Hansen. Ninety percent of enrollees are eligible for both Medicaid and Medicare, with the Medicare capitation rate adjusted for the frailty of the enrollees. Home care is covered, as are services such as audiology, dentistry, podiatry, and other supports, such as air conditioning. She noted that PACE now has 144 participating providers with close to 300 sites in 30 states. She said an upcoming report from the Bipartisan Policy Center will discuss mechanisms for its expansion.

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⁵ See https://www.npaonline.org (accessed June 15, 2022).

Hansen next discussed a collaboration among the American College of Emergency Physicians, the Society for Academic Emergency Medicine, the American Geriatrics Society, and the Emergency Nurses Association to develop accredited geriatric emergency departments (GEDs).⁶ There are currently approximately 275 GEDs around the United States, and the Veterans Administration (VA) is committed to providing GEDs in every VA hospital emergency department (Kennedy et al., 2022).⁷ In San Francisco, the University of California–San Francisco, Kaiser Health in San Francisco, the Zuckerberg General Hospital and Trauma Center, and the Dolby Family Foundation have supported research to identify validated screening tools that can be appropriately used in EDs. The particular lens of ADRD was and continues to be an essential component and research priority for GED program development, said Hansen. She noted that the GED Collaborative, with support from AARP will be producing videos to help GED (and all ED) staff recognize delirium and dementia. Additionally, publications addressing communication, care transitions, and best practices will be published this year.

CARE MODELS FOR OLDER PEOPLE AND PEOPLE WITH ADRD: WORLD HEALTH ORGANIZATION VISION AND CURRENT KNOWLEDGE

Hyobum Jang, technical officer in the Ageing and Health Unit of the World Health Organization (WHO) discussed an international perspective on efforts to improve quality of care and supports for people with ADRD and their caregivers. He began by noting three important reports that have been released in the last decade. The World Report on Aging and Health included a focus on the concept of healthy aging, which inspired the United Nations (UN) Decade of Healthy Aging 2021–2030⁸ (WHO, 2015). The Global Action Plan on the Public Health Response to Dementia focuses on the public health response to dementia, which has been identified as a priority public health issue (WHO, 2017). These reports have led to a convergence of life-course and disease-specific approaches to providing care for people with ADRD and supporting their caregivers, said Jang.

He explained that the UN Decade of Healthy Aging includes four action areas: addressing ageism; developing age-friendly communities; delivering inte-

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⁶ See https://gedcollaborative.com (accessed July 20, 2022).

⁷ See https://www.va.gov/opa/pressrel/pressrelease.cfm?id=5712 (accessed July 20, 2022).

⁸ See https://www.who.int/initiatives/decade-of-healthy-ageing (accessed July 20, 2022).

grated care responsive to the needs of older people; and providing long-term care for those who need it, which overlaps with ADRD care. The two action areas related to health care are being addressed by WHO. This is being done in part through WHO’s Integrated Care for Older People (ICOPE), which seeks to transform health and social care services and systems at multiple levels (WHO, 2022). The WHO vision for long-term care systems includes the provision of services that are people centered, empower older people and caregivers, and provide a continuum of integrated and coordinated care, while responding to the unique health and social care needs and goals of older people. The ICOPE vision also emphasizes the need to address the social determinants of health.

Jang explained that the WHO care model for ADRD is similar to these healthy aging models in its emphasis on a multidisciplinary collaborative approach and active cooperation between paid and unpaid caregivers (WHO, 2017). Proposed actions in the model include embedding a pathway of efficient, coordinated, and person-centered care for people with ADRD into health and social systems and shifting the locus of care from hospitals to multidisciplinary community-based care settings. Multidisciplinary care models for ADRD are effective when integrated within primary care, said Jang, citing a systematic review of ten trials examining a variety of care models (WHO, 2021). He added that primary care physician (PCP)-led care also decreased hospital costs and improved caregiver mental health.

Jang said a WHO study of long-term care (LTC) financing yielded many lessons (Barber et al., 2021). Researchers found that public investments in formal LTC systems are particularly important because of the aging population, reduction in family caregivers, and the difficulty of planning for LTC on an individual level. The study also found that while a separate funding stream for LTC may be helpful, it may also complicate coordination across health care and social care sectors. Another finding of note was that making cost control the primary objective or setting overly stringent eligibility criteria can lead to unmet needs.

Jang discussed three different examples from Qatar, Australia, and Korea to illustrate some of the ways different countries were addressing the care needs of older people. He began with an example from Qatar, a small country with high income. The country recently initiated a national system of care for older people that includes coordinated social and health care services in the home setting, specialized teams focused on restoring patients’ functional independence in the long-term inpatient setting, specialized care centers for older people that focus on a person-centered approach, and community-based residential care services to help patients transition from acute care to the home (WHO, 2021). The strength of this program is the presence of a dedicated geriatric unit in the main health center that collaborates with local service centers to provide integrated care for older people. In addition, under its

National Mental Health Strategy, Qatar is transitioning from hospital-based toward community-based mental health services (Sharkey, 2017).⁹

Jang next discussed an example from Australia. The state of New South Wales, Australia, operates a program in Western Sydney for older people with chronic and complex health needs. The model is community based, patient focused, and coordinated between home and hospital (McNab and Gillespie, 2015).¹⁰ A general practice liaison nurse visits the home, identifies needs, and coordinates care among providers, with patients and caregivers actively participating in care planning and management. Care is delivered in the most appropriate settings by multidisciplinary teams. Although positive outcomes have been observed, this program is new and is funded from multiple sources that do not cover all physician costs, making implementation challenging, noted Jang. Australia also has a countrywide transition care program that provides 12 to 18 weeks of services to older people in their homes following a hospital stay, with the goal of improving their independence and transitioning them to community living, said Jang (WHO, 2021).

Jang next discussed an example from South Korea. South Korea provides universal long-term care insurance (LTCI), managed by its single-payer national health insurance system. People over 65 or with specific geriatric diseases, including ADRD, are eligible for LTCI (Barber et al., 2021). In 2018, 8.4 percent of people over 65 received services covered by LTCI. In 2019, 54.5 percent of LTCI expenditures were for home-based care, including visiting nursing, bathing, day and night care, and short-term care. He noted that LTCI only covers care provided by formal paid providers. Among people who received LTCI, 89 percent received some support from family members. This has contributed to high rates of caregiver burden, mostly among female relatives, said Jang, who also noted a lack of coordination between the health and social care systems.

Jang noted that the need for integrated care for older people and people with ADRD, particularly long-term care for people with ADRD, has gained attention in the United States and globally. Many current models focus on care coordination, continuum of care, and integration at both the system level and among providers. Worldwide, the growing burden for informal caregivers and the need to provide better supports remains a challenge. He said that more concrete evidence is needed to enable countries, including lower- and middle-income economies, to adapt appropriate care models for their specific contexts.

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⁹ See https://www.moph.gov.qa/english/strategies/Supporting-Strategies-and-Frameworks/SummaryNationalMentalHealthFramework2019-2022/Pages/default.aspx (accessed July 20, 2022).

¹⁰ Case study is from an upcoming WHO, 2022, report, A Service Package of Long-Term Care Interventions.

ALTERNATIVE PAYMENT MODELS FOR ADRD CARE

Peter Hollmann, chief medical officer of Brown Medicine and board chair of the American Geriatrics Society, discussed alternative payment mechanisms for ADRD care. He explained that it is possible to incentivize changes in care delivery systems. Medicare, Medicare Advantage, and many commercial insurance plans use a variety of rewards and penalties to reduce cost and increase quality of care. Although incentives are insufficient on their own, they can create a shift in mindset, he added. That change of mindset incentivized implementation of programs like the Hospital Elder Life Program (HELP), Care of Vulnerable Elders (COVE), the Geriatric ED, and palliative care. Alternative payment mechanisms were developed to prioritize value over volume and to emphasize budgetary accountability in the health care system. He noted that these alternative mechanisms require flexibility to enable providers to direct their spending to attain specific goals. Medicare Advantage is one of the earliest examples of alternative payment mechanisms. He opined that the separation between Medicare Advantage and general Medicare may create challenges for scaling models and ideas across both programs.

He noted that while often criticized, the fee-for-service payment model is flexible and widely available. He explained that Current Procedural Terminology (CPT) codes used in fee-for-service models offer an opportunity to create new service descriptions in response to coverage changes. Hollmann served on a panel that created new CPT codes, including Transitional Care Management and Chronic Care Management, to facilitate CMS payment for services offered within medical homes. Use of both codes was associated with improvements in cost and quality by independent reviewers (Bindman and Cox, 2018; Schurrer et al., 2017). Services provided under these codes are reimbursable by Medicare whether they are performed by licensed medical professionals or unlicensed clinical staff when they are supervised by a physician, advanced practice registered nurse (APRN), or physician assistant (PA). However, those codes do not include services provided by community-based organizations. This complicates analyses to determine whether the service might lead to long-term savings. He said that in 2024 additional CPT codes will be released that address informal caregiving, include caregiver training provided by OTs or PTs to enhance patient functional performance, caregiver behavior management training, and telemedicine.¹¹

Alternative payment mechanisms (APMs) specific to patients with ADRD have been proposed, and their cost-effectiveness is well supported in the literature (Boustani et al., 2019; Haggerty et al., 2020). This research is critical

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¹¹ See https://www.ama-assn.org/amaone/cpt-current-procedural-terminology (accessed July 20, 2022).

because it can encourage health care plans to implement disease-specific CPT programs even in the absence of a disease-specific APM, he added. Disease-specific APMs have encountered several challenges. There are complex design issues, including challenges determining which physicians or organizations get paid for which services, and there can be difficulties in scaling and replication. Hollmann noted that many have encountered delays during consideration by the Physician-Focused Payment Model Technical Advisory Committee (PTAC).¹² The Medicare Payment Advisory Commission (MedPAC)¹³ has recommended ceasing the addition of new APMs.

Hollmann encouraged implementation of existing APMs and incentive programs. He noted one example, the Medicare Shared Savings Program,¹⁴ which uses a risk-adjusted budget but does not reimburse care and services provided by non-licensed staff, such as informal caregivers. Another example is Primary Care First,¹⁵ which provides infrastructure support, a telehealth waiver, and risk adjustment for the whole practice. It does not include additional reimbursement for care for patients with ADRD. He noted that it makes Primary Care First unlikely to change the behavior of physicians who see a small number of patients with ADRD. Another APM, Comprehensive Primary Care Plus (CPC Plus), does include additional reimbursement for providing care for people with ADRD. None of these programs include support infrastructure for community services. He noted that an obvious approach to avoiding ADRD quality-of-care issues associated with care transitions is to avoid hospitalization. While quality primary care for people with ADRD can reduce the need for hospitalization, supports from promising programs, such as Independence at Home and Hospital at Home, could also be beneficial.

DISCUSSION

How the Models Support Care Transitions Across Settings

Inouye asked the speakers to discuss how the various models addressed care transitions for people with ADRD. Robison explained that MFP is focused on improving the quality of care during transitions. Reimbursement funds that would have been spent on care in a nursing home are made available for

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¹² See https://aspe.hhs.gov/collaborations-committees-advisory-groups/ptac (accessed July 22, 2022).

¹³ See https://www.medpac.gov (accessed July 22, 2022).

¹⁴ See https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/sharedsavingsprogram/about (accessed July 22, 2022).

¹⁵ See https://innovation.cms.gov/innovation-models/primary-care-first-model-options (accessed July 22, 2022).

the person when they return to the community. As a result, states also get a larger federal match on their Medicaid funds. All of the resources provided in MFP are focused on establishing a care plan to support the person when they reenter the community. The program requires participants to transition into an existing community-based program, such as the Connecticut Home Care Program for Elders.¹⁶ The community-based program assigns a case manager who contacts the person monthly, visits semiannually, and is involved during subsequent care transitions and hospitalizations. She explained that COPE focuses on educating caregivers, improving caregivers’ resources, and achieving better coordination between the caregiver and PCP. Integration of COPE into a community-based program provides additional services to people living with ADRD.

Robison noted that these programs are not perfect. Robison observed increased rehospitalizations, ED visits, and falls among individuals in MFP despite deliberate efforts to integrate health care needs with community-based services. Inouye suggested that information technology and communications strategies might help address those challenges. Robison noted that American Rescue Plan Act funds are being directed for supporting value-based payments to HCBS providers to enable them to access data within the Connecticut Heath Information Exchange (HIE).^17,18 Robison said this should enable development of incentives, targeting, and risk identification to prevent care transitions due to avoidable hospitalizations. Primary care providers, nursing homes, and hospitals are already part of Connecticut’s HIE, and Robison suggested that integrating HCBS into this system is a promising reform.

Hansen added that the goal with care and support for people living with ADRD is to help them remain in their best and most stable functional state and ensure they encounter as few challenges as possible in the course of their daily lives. This requires preparation, anticipation, and then mitigation when something goes awry. Hansen noted that the public health concept of primary, secondary, and tertiary forms of prevention applies to care transitions. She offered an example of this approach, helping the caregiver anticipate clinical and behavioral changes and mitigate their effects can reduce avoidable ED visits and hospital stays. Hansen suggested that data can be used to help guide the family through care transitions for a person with ADRD, ensuring that the necessary equipment, medication, and care are ready before the person comes

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¹⁶ See https://portal.ct.gov/DSS/Health-And-Home-Care/Connecticut-Home-Care-Program-for-Elders/Connecticut-Home-Care-Program-for-Elders-CHCPE (accessed July 22, 2022).

¹⁷ See https://www.whitehouse.gov/american-rescue-plan/ (accessed July 22, 2022).

¹⁸ See https://conniect.org (accessed July 22, 2022).

home from the hospital. She emphasized that preparation, anticipation, and mitigation can help promote stability for patients, caregivers, and clinicians.

Jang noted that while none of the international models are perfect in their approach to care transitions, one consistently important feature is care coordination. Care coordination enables the person with ADRD to be referred to appropriate health and social services without requiring the family to identify these services themselves. Another important feature is the provision of support for caregivers in home and community settings, including training, education, and respite care. A third feature is continuous monitoring and assessment. He said the care coordinator and care provider should be continuously involved in monitoring and assessing the person’s changing care needs to enable smooth transitions.

Inouye noted that in several Asian countries where the populations are aging extremely rapidly, the need for caregivers has reached urgent levels. She added that this has led to development of some innovative models, such as a Japanese program that trains young volunteers to learn about care of older adults. Jang said there are growing efforts to train community members, both younger and older people, to act as caregivers. There are also experimental joint living facilities where older people can live together and support one another, similar to aging-in-place communities, though these are limited to people who can function relatively independently, he noted.

Hollmann explained that hospital readmissions are expensive and are also a common quality measure, which has made them a focus of many quality improvement programs. People with ADRD are among those most likely to be readmitted, which has encouraged changes to their care, including the establishment of home visit programs. Hollmann is working to strengthen the home visit program in Rhode Island, particularly for people recently discharged from the hospital. Rhode Island has also enhanced notifications through HIEs. He suggested a national HIE would be beneficial to improve visibility and access to information about care transitions. He added that published research has demonstrated that this is important for cost and quality.

How the Models Match Patients’ Goals and Priorities to the Care They Receive

Inouye next asked the group to discuss how current programs and payment policies match the goals and priorities of the patient with ADRD to the care they receive. Hollmann began by explaining that while current PCP-managed programs may not explicitly address patients’ goals, there are certain aspects that promote matching care to patient goals. The relationship with the primary care clinician is an important feature, as are the care management staff, who are attuned to supporting people with ADRD

to express their goals. Under Primary Care First, advanced care planning is a quality measure that must be raised during the annual wellness visit, said Hollmann. Additionally, patient surveys ask about patients’ overall perception of care and whether they felt that care included shared decision making.¹⁹ Hollmann suggested that patient surveys provided when patients leave the hospital should include a question that asks, “Is the care you are receiving consistent with your expectations and goals?” He noted that individuals may prefer less expensive care options, such as avoiding hospital stays or establishing advance directives.

Robison said that ascertaining the patient’s goals is a strength of both MFP and COPE. COPE works with the dyad, gaining input on goals from both the person with ADRD and the caregiver. MFP is voluntary, with eligibility predicated on the person’s desire to transition to the community, and the care plan is developed in accordance with their goals. The Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey used for HCBS in Connecticut addresses this specifically. She noted that the survey includes questions such as, “Does your care plan include the things that are important to you?” and “Does your caregiver know the things that are important to you?” Robison noted that patients’ goals are context dependent. A person’s health care goals will differ from their daily living goals. These different goals will require different types of services. Moreover, these goals are prioritized differently across individual patients, said Robison, highlighting the importance of the What Matters Movement.

How the Models Address Health Care Disparities in Underrepresented Groups

Inouye next asked the group to discuss how the models discussed can address health care disparities experienced by people from historically underrepresented communities. Hansen explained that the original PACE program was started in a historically marginalized community. The first efforts at replication of the PACE program were predominantly in communities that have historically been marginalized and made vulnerable. When she started the replications, many Black people did not use nursing homes, either because they were not available or because they did not feel comfortable. She added that 34 years later, PACE programs serving these same populations in South Carolina and around the country are robust.

Jang said that WHO is examining equity-related issues in caregiving. He

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¹⁹ See https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/HospitalQualityInits/HospitalHCAHPS (accessed July 22, 2022).

noted that in countries where formal home caregiving is not provided, that role is filled by family members, mostly women, who frequently experience job loss and increasing mental and physical stress, without support or respite. He also highlighted the existence of disparities between individual households, with some able to hire informal caregivers. However, this informal economy contributes to additional disparities, with paid informal caregivers largely being people from historically marginalized communities or immigrants. Advocating for these caregivers is one goal of the UN Decade of Healthy Aging,²⁰ he added. Inouye underscored the need to address the exacerbation of inequities and often severe financial problems that result from overreliance on informal caregivers, who are often women.

How the Models Address Health Outcomes and Care Processes

Inouye then asked the group to describe how the models they discussed address health outcomes and care processes for people with ADRD, such as fall prevention, restraint use, management of mentation, and delirium prevention, as well as the frequent complications of hospitalization, severe illness, and multi-morbidities. Hansen began by explaining that PACE programs have close relationships and good communication with their contracted hospitals. This enables PACE providers to anticipate when a member will be discharged and to gain specific information regarding their health and behavior. This reflects a structural process: development of a working relationship that enables person-centric knowledge to be communicated effectively in both directions. The PACE team monitors patients while they are in nursing homes, including regular site visits. She noted that being familiar with the person and their range of normal behaviors can help another party care for them safely and appropriately. In addition, individual patients are discussed at daily team meetings and weekly formal meetings. These meetings provide teaching opportunities and continuing education on delirium prevention and other topics.

Hollmann said that most health care organizations have an inherent interest in implementing safety measures, as unsafe conditions usually increase cost, length-of-stay, and the likelihood of needing post-acute care. He also cautioned against creating excessive measurement burdens for the primary care setting. He added that this risks diverting provider focus away from more important issues or causing unintended problems, similar to when efforts to avert falls in hospitals lead to patient immobility. He suggested that the patient experience of care, with a goal of ensuring that care goals are consistent with both the patient’s and the caregiver’s needs, could be the most important element to measure.

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²⁰ See https://www.who.int/initiatives/decade-of-healthy-ageing (accessed September 28, 2022).

Robison explained that COPE’s combination of an OT and nurse, combined with its individualized approach, supports patient safety. The OT becomes knowledgeable about the individual person with ADRD, which enables them to provide more specific recommendations for exercises. The nurse practitioner can detect undiagnosed conditions through lab tests and share that information with the primary care provider. However, COPE is a one-time program that does not continue through the duration of the disease, while the person with ADRD continues to change over time. She suggested this creates an opportunity to explore changes to the program to support longitudinal follow-up.