Reducing the Impact of Dementia in America A Decadal Survey of the Behavioral and Social Sciences (2021) / Chapter Skim
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6 Health Care, Long-Term Care, and End-of-Life Care
6 Health Care, Long-Term Care, and End-of-Life Care
Pages 171-208
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From page 171... ...
And many of those who become totally dependent upon others will spend time living in long-term care facilities and ultimately receive such care as hospice at the end of life. Thus, people living with dementia have relationships with numerous professionals and institutions -- often a great many, over time -- including primary care providers; neurologists, psychiatrists, geriatricians, and nurse practitioners who specialize in dementia care; social workers; and public and private entities that provide residential and end-of-life care.
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From page 172... ...
Questions about the quality of dementia care provided by nonspecialists and how patients fare when they have other significant medical conditions are key to reducing negative impacts. This section looks first at what is known about the quality of primary care and then at approaches to coordinating care.
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From page 173... ...
For example, one might expect that a BOX 6-1 Quality Indicators for Dementia Care Domain: Assessment and Screening • Annual assessment of cognition • Staging of dementia • Annual evaluation of function • Labs performed • Depression screening • Annual screening for behavioral symptoms • Annual medication review Domain: Counseling • Caregiver counseled in at least two of the following domains: – dementia diagnosis, prognosis, or behavioral symptoms – safety – community resources • Counseled regarding driving • Counseled about advance care planning or palliative care • Identification of a surrogate decision maker Domain: Treatment • Discussion about acetylcholinesterase inhibitors • Cerebrovascular accident or stroke prophylaxis, if indicated • Treatment with behavioral interventions before or concurrently with medications • Assessment of response to new medication for dementia or depression • Risks/benefits discussion documented for new antipsychotics • Medications discontinued or justified when associated with mental health status changes SOURCE: Adapted from Jennings et al.
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From page 174... ...
. Comprehensive Dementia Care Increasingly, health care delivery systems are responding both to the needs of their patients and to a movement for incentive-based changes in health care financing by exploring comprehensive approaches to providing care.
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From page 175... ...
Some comparative effectiveness research to test such comprehensive approaches is under way, but additional pragmatic trials and assessment of the impacts of reimbursement structure and other issues, will be important extensions of existing research. A Model of Comprehensive Care at the Population Level Researchers have explored ways to bring the benefits of evidence-based dementia care to larger populations.
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From page 176... ...
Figure 6-2 shows in more detail the issues at play in caring for individuals who progress through the stages of disease. A comprehensive dementia care approach such as this may benefit patients and families, and also yield cost savings for both patients and the health care system.
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From page 177... ...
because it is usually very difficult to find nursing or assisted living facilities that will accept these patients (for reasons that include staff time needed and potential liability resulting from patient or staff injuries)
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From page 178... ...
Many people living with dementia do not receive care in a health system but rely on a primary care physician who serves a wide array of patients, relatively few of whom have dementia. It is difficult for small or solo practices to provide the expertise and access to programs needed by dementia patients.
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From page 179... ...
This section considers issues associated with assisted living and memory units, nursing homes, alternatives to nursing homes, and palliative and hospice care. 1 These data include only facilities that are regulated by states or the federal government.
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From page 180... ...
. Although the majority of nursing homes provide both long-stay and postacute care, many have sought to specialize in the latter, marketing their facilities to hospitals and Medicare Advantage plans to increase admissions 2 In 2014, 330,000 Medicaid beneficiaries received assisted living services (U.S.
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From page 181... ...
Nursing home residents and staff in the United States were hit particularly hard by the virus, which caused extremely high rates of infection and death in nursing homes and other congregate care settings (35–40% of COVID-19 deaths as of fall 2020 [Soucheray, 2020] ; see Chapter 1)
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From page 182... ...
It would also be useful to know more about patterns of use of alternatives to nursing homes. States are increasingly using Medicaid waivers for home and
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From page 183... ...
, but the trade-off for people living with dementia is not known. Sources of risk for patients receiving home care include the complexity of adhering to postacute care instructions from multiple physicians and higher rates 4 https://supreme.justia.com/cases/federal/us/527/581 5 https://www.cms.gov/files/document/highlights.pdf
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From page 184... ...
Research on the implications of greater reliance on home health, including the increased responsibilities assumed by families, as well as how health care systems can better coordinate the care provided by home health agencies with the medical treatment being managed by primary care physicians, is badly needed. Palliative and Hospice Care There is evidence that both palliative and hospice care improve the quality of life for people at the end of life, including dementia patients (Evans et al., 2019)
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From page 185... ...
It would also be useful to know more about how persons living with dementia use palliative and hospice care; the preferences of dementia patients, their caregivers, and providers; the care choices made on patients' behalf in the last months and weeks of life; and how advance care directives affect the use of these kinds of care. PAYING FOR CARE: MEDICARE AND MEDICAID A key factor in the quality of dementia care, the timeliness of dementia detection, and the quality of life for persons living with dementia is how their care is paid for.
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From page 186... ...
and outpatient medical insurance (Part B) on a fee-for-service basis, with optional Part D prescription insurance, and those enrolled in Medicare Advantage, in which Parts A and B, and usually also Part D prescription insurance, are bundled together; see Box 6-3.8 This section examines two key challenges associated with how aspects of dementia care are covered and the current state of thinking about managed care.
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From page 187... ...
. Data about annual wellness visits and cognitive assessments are limited, but another study, based on a nationally representative sample of older Americans, showed that in 2019, only 30 percent had undergone a cognitive assessment in the primary care setting; rates were higher among persons enrolled in Medicare Advantage compared with those enrolled in traditional Medicare (Jacobson et al., 2020)
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From page 188... ...
These incentives can lead to a "revolving door" between nursing homes and hospitals, with adverse consequences for cognitively impaired and frail elderly people (Mor et al., 2010; Goldfeld et al., 2013; Polniaszek et al., 2011)
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From page 189... ...
. Managed care programs have different incentives, encouraging providers to use resources prudently while maximizing patient outcomes, which may permit them to provide better management of care for people living with dementia.9 One promising new opportunity is a set of developments allowing Medicare Advantage plans to deliver supplemental services as part of the Medicare benefit package.
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From page 190... ...
Finally, plans can engage directly with enrollees to implement preventive health, case management, disease management, or other related interventions. Medicare Advantage and Dementia Care How might managed care improve outcomes for dementia patients?
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From page 191... ...
. Unlike traditional Medicare, moreover, Medicare Advantage plans can elect to cover case management by social workers, adult day care services, respite for caregivers, in-home meal delivery, and other long-term services and supports should the plans decide that these interventions make it possible to avert other medical spending or improve outcomes (White et al., 2019; Yang et al., 2012; Thomas et al., 2019; Durfey et al., 2021)
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From page 192... ...
Indeed, recent research on disenrollment in Medicare Advantage plans shows that once Medicare beneficiaries receive a dementia diagnosis, they are much more likely to switch back to traditional Medicare or switch to another Medicare Advantage plan relative to Medicare Advantage members without a new dementia diagnosis. This finding is consistent with other research indicating that Medicare Advantage members who have chronic conditions and are users of nursing home or home health services are more likely to disenroll from their plan in the year in which they have these utilization experiences than in other years (Jung et al., 2018; Goldberg et al., 2017, 2018)
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From page 193... ...
Disability-based special needs plans that cover permanent residents of nursing homes combine the per diem payment for nursing home care from Medicaid with the highest level of Medicare monthly payment for those patients with the most complex mix of diagnoses. Although there is ample evidence that enrollees in Medicare Advantage plans have lower rates of hospitalization and readmission relative to those enrolled in traditional Medicare, after risk adjustment, whether these broad differences are applicable to people living with dementia is unknown (Cohen et al., 2012)
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From page 194... ...
Indeed, because Medicare Advantage plans are serving more individuals living with dementia and an increasingly impaired population, research on how different types of Medicare Advantage plans can affect the care and outcomes experienced by persons living with dementia is critical. The structure of emerging special needs plans varies, so it will be important to examine whether any of these structures are more effective than the others in improving the outcomes of persons with dementia living in nursing homes (Meyers et al., 2020)
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From page 195... ...
Research on the structures of different dementia services offered by health plans and, in turn, their effects on quality of care and outcomes among Medicare Advantage beneficiaries could provide insight into how policies and regulations pertaining to dementia care can best be revised. Such research conducted over the next decade could support the development of policy and the delivery of more effective, more efficient care.
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From page 196... ...
TABLE 6-1 Detailed Research Needs 1: Documentation of Care • Documentation of existing practices and experiences of Received from Primary diagnosis and subsequent care management; how those Care Providers practices and experiences are associated with stages of disease and symptom progression, and how they vary across type of dementia as well as racial, ethnic, and socioeconomic groups and geography • Assessment of the effectiveness of patient and caregiver support and management systems embedded in health care systems, and system capacity for mounting comprehensive, multifaceted interventions • Assessment of the effectiveness of population health management systems designed to identify and care for persons living with dementia and their caregivers as implemented by health plans and accountable care organizations • Identification of care gaps and unmet needs of persons living with dementia and caregiver support • Identification of gaps in current standardized systems of coordinated care, including management of multiple comorbidities • Identification of effective care practices that can be disseminated 2: Clarification of Disease • Observational studies examining how persons with Trajectories dementia progress clinically and in their use of services, including behavioral health care, long-term care, and end-of life care, and how these trajectories vary across type of dementia; racial, ethnic, and socioeconomic groups; and geography, as well as among those with comorbidities
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• Description and monitoring of factors that contribute to problems with nursing home quality, particularly in light of the acceleration
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From page 198... ...
on caregivers and clinical outcomes for persons with dementia, as well as on utilization of facilities and services and costs 4: Use of and Variation in End- • Effects of different types of dementia care programs of-Life Care and payment structures on the timing of hospice referrals • Evaluation of the feasibility of a palliative/home care benefit for patients and families willing to forgo aggressive, life-prolonging services and treatments
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From page 199... ...
The issues are likely to be most acute for the direct care workforce because of financial disincentives such as low pay and poor benefits, as well as limited opportunities for career advancement. TABLE 6-3 Detailed Research Needs 1: Comparative Effectiveness of • Comparison of the quality of care, clinical and Financing Structure quality-of-life outcomes, and costs experienced by Medicare beneficiaries living with dementia versus those in managed care plans • Comparison of the outcomes of persons living with advanced dementia being cared for and managed under various specialized managed care programs and alternative payment models, such as special needs plans, accountable care organizations, and Program of All-Inclusive Care for the Elderly programs 2: Ways to Modify Incentives • Studies of how Medicare Advantage plans and alternative payment models best provide incentives to implement active care management for people living with dementia 3: Evaluation of Approaches to • Identification of optimal means of financing and Integrated Financing paying for individual services across health care delivery and community-based organizations provided to individual persons with dementia and their caregivers
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From page 200... ...
Nursing Homes with COVID-19 Cases. Journal of the American Geriatrics Soci ety, 68(8)
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From page 201... ...
. An alternative payment model to support widespread use of collaborative dementia care models.
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From page 202... ...
. Preferred provider relationships between Medicare Advantage plans and skilled nursing facilities reduce switching out of plans: An observational analysis. Inquiry, 55.
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nursing homes. Journal of the American Geriatrics Society, 68(11)
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From page 204... ...
. Medicare Advantage enrollees' use of nursing homes: Trends and nursing home characteristics.
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From page 205... ...
. Health care utilization, care satisfaction, and health status for Medicare Advantage and traditional Medicare beneficiaries with and without Alzheimer disease and related dementias.
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From page 206... ...
. The University of California at Los Angeles Alzheimer's and Dementia Care Pro gram for comprehensive, coordinated, patient-centered care: Preliminary data. Journal of the American Geriatrics Society, 61(12)
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From page 207... ...
. Perspectives of Medicare Advantage plan representatives on addressing social determinants of health in response to the CHRONIC Care Act. JAMA Network Open, 2(7)
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From page 208... ...
. Dementia care and quality of life in assisted living and nursing homes.
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