Pei-Jung Lin

Background: As a person's Alzheimer's disease (AD) progresses, caregivers can experience increasing emotional, physical, and financial demands that impair their work productivity. Understanding how caring for individuals with AD affects caregiver employment and work performance as the disease advances is critical for informing support services and policies to address caregiver needs. We examined employment and productivity loss among caregivers of community‐dwelling individuals with AD. Method: We conducted a web‐based survey of U.S. adults providing unpaid care to individuals with AD. The survey was sent to 6,037 individuals affiliated with UsAgainstAlzheimer's and other research and advocacy organizations. Caregiver respondents reported the care recipient's AD stage (mild cognitive impairment [MCI], mild, moderate, and severe) based on symptom descriptions. We used the Short‐Form Caregiver Work Limitations Questionnaire to measure work limitations in time management, physical demands, mental‐interpersonal demands, and output, and to estimate productivity loss due to presenteeism (i.e., reduced productivity while working). Analyses were stratified by the care recipient's AD severity. Result: Our analytic sample comprised 137 individuals, of whom 41 cared for individuals with MCI or mild dementia, 65 with moderate, and 31 with severe dementia (Table 1). Full‐time employment was more common among caregivers of individuals with milder AD stages. A greater proportion of caregivers of individuals with severe dementia (41%) reported reducing work hours or leaving the workforce due to caregiving responsibilities, compared to caregivers for MCI/mild (24%) and moderate AD (29%), although differences did not reach statistical significance. Employed caregivers ( n = 66) reported that caregiving made it difficult to meet work time demands 42% of the time, with greater impairments among caregivers of individuals with severe dementia (Table 2). Productivity loss due to presenteeism was approximately 10% across all AD stages, considerably exceeding the 2.7% average for the general U.S. population. Conclusion: Caregivers may face increasing difficulty maintaining employment as their care recipient's AD progresses. Among those who remain employed, productivity losses due to presenteeism persist at elevated levels across all disease stages. These findings highlight the need for policies, such as flexible work arrangements and caregiving support systems, to address employment challenges and productivity losses experienced by caregivers of individuals with AD.

Background: The introduction of new Alzheimer's disease (AD) treatments in the US necessitates updated patient and caregiver health utility estimates for economic evaluations. Method: We conducted a web‐based survey to characterize health‐related quality of life (HRQoL) of US adults with mild cognitive impairment (MCI) or AD, and adults who self‐identified as a current caregiver of someone with MCI or AD. We measured health utilities using the EuroQol EQ‐5D‐5L and Quality of Life in AD (QoL‐AD) instruments. The survey sample was drawn from UsAgainstAlzheimer's A‐LIST® online cohort. Individuals with MCI or mild Alzheimer's dementia self‐reported their utilities. Caregivers randomly received either a proxy survey to complete on behalf of the person with moderate to severe AD they cared for, or a caregiver survey that asked them to self‐report their own utilities. We computed mean utility scores for patients and caregivers separately, stratified by disease severity (MCI, mild, moderate, and severe AD) and care setting (community and nursing home). Result: The final analytic sample comprised 241 patient responses (patient self‐reports: n = 105; caregiver proxy‐reports: n = 136) and 176 caregiver responses (i.e., caregiver self‐reports). Patient EQ‐5D‐5L scores decreased monotonically as disease severity increased. Health utilities among community‐dwelling individuals with MCI or AD were as follows: 0.77 (MCI), 0.68 (mild), 0.49 (moderate), and 0.22 (severe). EQ‐5D‐5L values were generally lower for individuals residing in nursing homes (0.04 to 0.78) compared to those in community settings (0.22 to 0.77). Patients’ QoL‐AD scores did not exhibit a consistent association with disease severity. Caregivers’ EQ‐5D‐5L scores also did not exhibit a monotonic trend with the patient's disease severity, although caregiver utilities were generally higher for those caring for someone in a nursing home than for those caring for patients in the community. Conclusion: Our findings showed that health utilities decreased with AD severity, with lower utilities observed in nursing home residents versus community patients. Caregivers of nursing home patients with AD reported higher utilities than those caring for community‐dwelling patients. Our results contribute to improving AD economic evaluations by reflecting more contemporary populations and facilitating value assessments of novel therapies that delay the progression from MCI to more severe disease stages.

Background: The introduction of new Alzheimer's disease (AD) treatments necessitates updated health utilities for economic evaluations. Objective: Measure health utilities of US adults with mild cognitive impairment (MCI) and AD and their caregivers. Methods: We conducted a web-based survey using the EuroQol EQ-5D-5L and Quality of Life in AD (QoL-AD), stratified by disease stage and care setting. Individuals with MCI or mild Alzheimer's dementia self-reported their utilities. Caregivers randomly received either a proxy survey to complete on behalf of the person with moderate to severe AD they cared for, or a caregiver survey that asked them to self-report their own utilities. Results: We received 241 patient responses and 176 caregiver responses. Patient EQ-5D-5L scores decreased monotonically as disease severity increased, with a 0.55 utility difference between individuals with MCI and severe AD in the community setting. EQ-5D-5L values were generally lower for individuals residing in nursing homes (0.04 to 0.78) compared to those in community settings (0.22 to 0.77). Patients’ QoL-AD scores did not exhibit a consistent association with their disease severity. Similarly, caregivers’ EQ-5D-5L scores did not exhibit a monotonic trend with the patient's disease severity, although caregiver utilities were generally higher for those caring for someone in a nursing home than for those caring for patients in the community. Conclusions: Our results contribute to improving AD economic evaluations by reflecting the lived experience of more contemporary populations and facilitating the value assessment of novel therapies that delay progression from MCI to more severe disease stages.

Vitiligo is an autoimmune skin depigmenting disorder that can negatively impact quality of life. A new FDA approved treatment for vitiligo offers considerable promise, and to maximize benefits strategies to implementation should consider disease burden, healthcare access, and healthcare utilization of individuals with vitiligo. Using the All of Us Research Program’s large data set, including survey responses, we investigated these outcomes among participants with and without vitiligo. Our analysis used quality of life, delayed care due to an obstacle, and seeing a doctor in the past year as dichotomized proxies for disease burden, healthcare access, and healthcare utilization. The results show that people with vitiligo are more likely to report worse quality of life but ostensibly greater healthcare access and utilization compared to people without vitiligo. However, these relationships are not significant when adjusted for demographics, socioeconomic characteristics, and comorbidities of vitiligo. Prior research has shown non-Caucasian individuals have worse health outcomes in general, and worse quality of life within the vitiligo population. Our data demonstrated consistent findings; moreover, we found that non-Caucasian individuals with vitiligo had inferior healthcare access and lower health care utilization than Caucasian individuals. Implementation of new treatments for vitiligo should prioritize disadvantaged individuals to improve health equity.

Introduction: Ever since the United States Food and Drug Administration (FDA) approved aducanumab and Centers for Medicare & Medicaid Service (CMS) restricted coverage for the drug, a crucial question has been how other payers will behave. This study examined how Medicaid and commercial plans cover aducanumab.Methods: We created a database of aducanumab coverage policies issued by Medicaid fee‐for‐service programs (50 states and DC) and 35 of the largest commercial plans (covering ∼ 84% of the commercially insured population).Results: We found that only 41% of Medicaid fee‐for‐service plans have issued a publicly available coverage policy for aducanumab and that there is wide variation in these coverage criteria. Although the majority of included commercial plans have issued an aducanumab coverage policy, only five plans covered aducanumab for their enrollees. Available coverage polices showed little consistency in how to measure sufficient treatment response.Discussion: Differences in coverage policies mean that Alzheimer's patients’ access to aducanumab may vary across jurisdictions and across commercial insurers.Highlights: Less than half of state Medicaid fee‐for‐service plans issued a publicly available coverage policy for aducanumab. Available Medicaid coverage policies varied substantially in their coverage criteria. The majority of included commercial plans issued an aducanumab coverage policy; only five plans covered aducanumab. Available coverage polices showed little consistency in how to measure sufficient treatment response.

Despite advances in dementia prevention and treatment,¹ end-of-life care remains critically important for all individuals living with the condition. Hospice, for example, provides comfort care and support for terminal patients and their families. Older adults with dementia are among those who are most likely to benefit from end-of-life hospice care because these individuals often experience multiple distressing symptoms (eg, pain, depression, and delusions) and poor quality of life.² To qualify for the Medicare hospice benefit, a patient must be certified by 2 physicians as terminally ill, defined as having a medical prognosis of 6 months or less.³ However, prognostic challenges in dementia, such as its long disease duration and unpredictable trajectories, make certifying eligibility for the Medicare hospice benefit difficult. Although hospice utilization in the Medicare population has increased in recent decades, the service remains underused, with only half of Medicare decedents enrolling in the hospice benefit.^3-5 Individuals with noncancer illness, including those with dementia, and from underserved communities have lower hospice utilization rates.^5-8

The US Food and Drug Administration (FDA) approval of aducanumab in June 2021 marked a milestone for the Alzheimer disease (AD) community, but the event also se

Background: Dementia is often underdiagnosed and this problem is more common among some ethnoracial groups. Objective: The objective of this study was to examine racial and ethnic disparities in the timeliness of receiving a clinical diagnosis of dementia. Research Design: This was a prospective cohort study. Subjects: A total of 3966 participants age 70 years and above with probable dementia in the Health and Retirement Study, linked with their Medicare and Medicaid claims. Measures: We performed logistic regression to compare the likelihood of having a missed or delayed dementia diagnosis in claims by race/ethnicity. We analyzed dementia severity, measured by cognition and daily function, at the time of a dementia diagnosis documented in claims, and estimated average dementia diagnosis delay, by race/ethnicity. Results: A higher proportion of non-Hispanic Blacks and Hispanics had a missed/delayed clinical dementia diagnosis compared with non-Hispanic Whites (46% and 54% vs. 41%, P<0.001). Fully adjusted logistic regression results suggested more frequent missed/delayed dementia diagnoses among non-Hispanic Blacks (odds ratio=1.12; 95% confidence interval: 0.91–1.38) and Hispanics (odds ratio=1.58; 95% confidence interval: 1.20–2.07). Non-Hispanic Blacks and Hispanics had a poorer cognitive function and more functional limitations than non-Hispanic Whites around the time of receiving a claims-based dementia diagnosis. The estimated mean diagnosis delay was 34.6 months for non-Hispanic Blacks and 43.8 months for Hispanics, compared with 31.2 months for non-Hispanic Whites. Conclusions: Non-Hispanic Blacks and Hispanics may experience a missed or delayed diagnosis of dementia more often and have longer diagnosis delays. When diagnosed, non-Hispanic Blacks and Hispanics may have more advanced dementia. Public health efforts should prioritize racial and ethnic underrepresented communities when promoting early diagnosis of dementia.

Background: Dementia is often underdiagnosed, and self‐reported data suggest that this problem may be more common among racial and ethnic minority groups. This study examined racial and ethnic disparities in the timeliness in which individuals receive a formal dementia diagnosis.Method: This analysis used eight waves of US national surveys from 2000‐2014 Health and Retirement Study, linked with Medicare and Medicaid claims. We identified study participants age ≥70 with dementia using a well‐validated statistical model based on individual’s age, gender, education, cognition, and functional limitations. We assessed the proportion of patients not receiving a coded diagnosis of dementia in their claims by the time the prediction model classified them as having dementia. We used logistic regression models to compare the likelihood of missed or delayed dementia diagnoses in claims by race and ethnicity, adjusting for patient characteristics. We analyzed dementia severity, measured by cognition (TICS scores for self‐respondents; IQCODE scores for proxy‐respondents) and functional limitations, at the time of a dementia diagnosis documented in claims, by race/ethnicity. All analyses adjusted for sampling weights.Result: Our sample included 3,966 older adults with dementia. Forty‐two percent had a missed or delayed dementia diagnosis in their claims. This proportion was higher among non‐Hispanic blacks and Hispanics than among non‐Hispanic whites (46% and 54% vs. 41%, p<0.001). Logistic regression model indicated more frequent missed/delayed dementia diagnoses among non‐Hispanic blacks (OR=1.27; 95% CI: 1.05‐1.53) and Hispanics (OR=1.83; 95% CI: 1.43‐2.35), compared to non‐Hispanic whites. Over the study period, 76% had a dementia diagnosis documented in their claims. At the time of diagnosis, non‐Hispanic blacks and Hispanics had poorer cognitive function and more functional impairments, compared to non‐Hispanic whites.Conclusion: Non‐Hispanic blacks and Hispanics may experience missed or delayed diagnoses of dementia more often than non‐Hispanic whites. When they are diagnosed, non‐Hispanic blacks and Hispanics may have more advanced dementia compared to non‐Hispanic whites. Public health efforts such as the Brain Health Initiative should tailor campaigns to different ethnoracial groups when promoting early diagnosis of dementia. The medical community should implement provider training on culturally competent dementia care and improve documentation of dementia diagnostic findings in health insurance claims.

Biogen's announcement last fall that it will seek U.S. Food and Drug Administration approval for its Alzheimer's disease (AD) treatment, aducanumab, 7 months after the drug was declared a failure, buoyed patients and families, but put health payers and policymakers on alert. Whether aducanumab succeeds, other disease‐modifying therapies for AD will follow, and the health‐care system is unprepared for the reimbursement and access challenges. Novel AD therapies are much needed, but we cannot assume substantial cost offsets. With forethought and preparation, however, the health‐care system can accommodate new AD drugs. First, we urge the use of cost‐effectiveness of new Alzheimer's treatments as a starting point for setting value‐based prices. Second, payments for new AD therapies should ideally incorporate a performance warranty, which helps apportion risk associated with initial therapy value estimates between drug manufacturers and payers. Third, we urge consideration of “subscription” payment agreements to address system affordability issues.