Economic costs of family caregiving for persons with advanced stage cancer: a longitudinal cohort study.

PURPOSE: To form a multifaceted picture of family caregiver economic costs in advanced cancer. METHODS: A multi-site cohort study collected prospective longitudinal data from caregivers of patients with advanced solid tumor cancers. Caregiver survey and out-of-pocket (OOP) receipt data were collected biweekly in-person for up to 24 weeks. Economic cost measures attributed to caregiving were as follows: amount of OOP costs, debt accrual, perceived economic situation, and working for pay. Descriptive analysis illustrates economic outcomes over time. Generalized linear mixed effects models asses the association of objective burden and economic outcomes, controlling for subjective burden and other factors. Objective burden is number of activities and instrumental activities of daily living (ADL/IADL) tasks, all caregiving tasks, and amount of time spent caregiving over 24 h. RESULTS: One hundred ninety-eight caregivers, 41% identifying as Black, were followed for a mean period of 16 weeks. Median 2-week out-of-pocket costs were $111. One-third of caregivers incurred debt to care for the patient and 24% reported being in an adverse economic situation. Whereas 49.5% reported working at study visit 1, 28.6% of caregivers at the last study visit reported working. In adjusted analysis, a higher number of caregiving tasks overall and ADL/IADL tasks specifically were associated with lower out-of-pocket expenses, a lower likelihood of working, and a higher likelihood of incurring debt and reporting an adverse economic situation. CONCLUSIONS: Most caregivers of cancer patients with advanced stage disease experienced direct and indirect economic costs. IMPLICATIONS FOR CANCER SURVIVORS: Results support the need to find solutions to lessen economic costs for caregivers of persons with advanced cancer.

Use of high cost care among Veterans with comorbid mental illness and Alzheimer's Disease and related dementias.

INTRODUCTION/OBJECTIVE: Alzheimer's Disease and Other Related Dementias (AD/ADRD) leads to frequent emergency department (ED) and inpatient use. Mental health symptoms among persons with AD/ADRD increases cognitive and functional disabilities and could contribute to these high rates of intensive health care use. The objective of this paper is to assess the relationship of mental illness on 12-month patterns in hospitalization and ED use among Veterans aged 65 and over with a new AD/ADRD diagnosis. METHODS: We used an existing dataset of administrative electronic health record data of Veterans with AD/ADRD from the US Veterans Health Administration linked with Medicare claims data from 2011-2015. We use multivariable logistic regression to examine the association between no pre-existing mental illness, pre-existing mental illness (e.g., major depressive disorder, generalized anxiety disorder, or post-traumatic stress disorder), and pre-existing severe mental illness-or SMI-(e.g., bipolar disorder, major depressive disorder with psychosis, or schizophrenia) and 12- month ED and hospitalization use and readmissions among Veterans who had an initial hospitalization visit. We estimated predicted probabilities, differential effect, and associated 95% confidence intervals. RESULTS: In our sample, 1.4% had SMI and 11% had non-SMI mental illness. The unadjusted percentage with inpatient and ED use was higher among Veterans with SMI (34% and 26%, respectively) and Veterans with non-SMI mental illness (20%, 16%) compared with Veterans without pre-existing mental illness (12%, 9%). Compared to individuals with no pre-existing mental illness, having a pre-existing mental illness (1.27 percentage points, 95% CI: 0.76, 1.78) and a pre-existing SMI (7.17 percentage points, 95% CI: 5.66, 8.69) were both associated with an increased likelihood of ED use. The same pattern was observed for any inpatient use (mental illness 2.18, 95% CI: 1.59, 2.77; SMI 9.91, 95% CI: 8.21, 11.61). Only pre-existing SMI was associated higher hospitalization readmission. DISCUSSION: Pre-existing mental illness increases use of high cost, intensive health care and this association is higher of more severe mental health conditions. We also show that pre-existing mental illness exerts a unique influence, above and beyond other comorbidities, such as diabetes, on ED and inpatient visits. More needs to be done to increase recognition of the unique risks of this combination of health conditions and encourage strategies to address them. Developing, testing, and implementing comprehensive strategies that address the intersection of ADRD and mental illness is promising approach that requires more focused attention.

Rural disparities in use of family and formal caregiving for older adults with disabilities.

BACKGROUND: As federal and state policies rebalance long-term care from institutional settings to home- and community-based settings, reliance on formal (paid) and family (unpaid) caregivers for support at home nationally has increased in recent years. Yet, it is unknown if use of formal and family care varies by rurality. METHODS: Using the Health and Retirement Study, we describe patterns in receipt of combinations of formal and family home care and self-reported expectation of nursing home use by rurality among community-dwelling adults aged 65+ with functional limitations from 2004 to 2016. RESULTS: Older adults residing in rural areas are more likely to receive any family care than those in urban areas. From 2004 to 2016, a higher proportion of older adults in rural areas receive care from family caregivers exclusively while a lower proportion receive care from formal caregivers exclusively. When examining older adults in urban areas, we find the opposite - a higher proportion of urban adults rely exclusively on formal care and a lower proportion rely exclusively on family care in 2016 compared to 2004. CONCLUSION: We find that national estimates of sources of caregiving and their changes over time mask significant heterogeneity in uptake by rurality. Understanding how older adults in rural areas are, or are not, receiving home-based care compared to their urban peers and how these patterns are changing over time is the first step to informing supports for family and formal caregivers.

Short-term effects of comprehensive caregiver supports on caregiver outcomes.

OBJECTIVE: To estimate the association of the Veterans Health Administration (VHA) Program of Comprehensive Assistance for Family Caregivers (PCAFC) implemented in 2011 with caregiver health and health care use. DATA SOURCES: VHA claims and electronic health records from May 2009 to May 2018. STUDY DESIGN: Using a retrospective, pre-post study design with inverse probability of treatment weights to address selection into treatment, we examine the association of PCAFC on caregivers who are veterans: (1) outpatient primary, specialty, and mental health care visits; (2) probability of uncontrolled hypertension and anxiety/depression; and (3) VHA health care costs. We compare outcomes for caregivers approved for PCAFC (treatment) to caregivers denied PCAFC (comparison). DATA COLLECTION/EXTRACTION METHODS: Not applicable. PRINCIPAL FINDINGS: In the year pre-application, we observe similar probabilities of having any VHA primary care (~36%), VHA specialty care (~24%), and VHA or VHA-purchased mental health care (~22%) for treatment and comparison caregivers. In the year post-application, treated caregivers had a 5.89 percentage point larger probability of any outpatient VHA primary care (p = 0.002) and 4.34 percentage points larger probability of any outpatient mental health care use (p = 0.014). Post-application, probabilities of having uncontrolled hypertension or diagnosed anxiety/depression were higher for both treated and comparison groups. In the second year post-application, treated caregivers had a 1.88 percentage point larger probability of uncontrolled hypertension (p = 0.019) and 4.68 percentage points larger probability of diagnosed anxiety/depression (predicted probabilities: treated = 0.30; comparison = 0.25; p = 0.005). We find no evidence of differences in VHA total costs by PCAFC status. CONCLUSIONS: Our findings that PCAFC enrollment is associated with increased health care diagnosis and service use may reflect improved access for previously unmet needs in the population of veteran caregivers for veterans in PCAFC. The costs and value of these increases can be weighed against other effects of the program to inform national policies supporting caregivers.

The Landscape of State Policies Supporting Family Caregivers as Aligned With the National Academy of Medicine Recommendations.

Policy Points In the absence of federal policy, states adopted policies to support family caregivers, but availability and level of support varies. We describe, compare, and rank state policies to support family caregivers as aligned with National Academy of Medicine recommendations. Although the landscape of state policies supporting caregivers has improved over time, few states provide financial supports as recommended, and benefit restrictions hinder accessibility for all types of family caregivers. Implementing policies supporting family caregivers will become more critical over time, as the reliance on family caregivers as essential providers of long-term care is only expected to grow as the population ages. CONTEXT: In the United States in 2020, approximately 26 million individuals provided unpaid care to a family member or friend. On average, 60% of caregivers were employed, and they provided 20.4 hours of care per week on top of employment. Although a handful of patchwork laws exist to aid family caregivers, systematic supports, including comprehensive training, respite, and financial support, remain limited. In the absence of federal supports, states have adopted policies to provide assistance, but they vary in availability and level of support provided. Our objectives were to describe, compare, and rank state policies to support family caregivers over time. METHODS: We used publicly available data from the AARP Long-Term Services and Supports State Scorecard, the National Academy for State Health Policy, and Tax Credits for Workers and Families for all 50 states and the District of Columbia (2015-2019). FINDINGS: We found that states had increased supports to family caregivers over this five-year period, although significant variability in adoption and implementation of policies persists. Approximately 20% of states had enacted policies that exceed the federal Family and Medical Leave Act requirements, and 18% offered paid family leave. However, most states had not improved spousal impoverishment protections for Medicaid beneficiaries. For example, from 2016 to 2019, 24% of states provided fewer or no protections, while 71% of states did not improve spousal impoverishment protections over time. Access to training for caregivers varied based on eligibility criteria (e.g., select populations and/or only co-residing caregivers). CONCLUSIONS: Overall, state approaches to support family caregivers vary by eligibility and scope of services. Substantial gaps in support of caregivers, particularly economic supports, persist. Although the landscape of state policies supporting caregivers has improved over time, few states provide financial supports as recommended by the National Academy of Medicine, and benefit restrictions hinder accessibility for all family caregivers.

The Metrics Matter: Improving Comparisons of COVID-19 Outbreaks in Nursing Homes.

OBJECTIVES: In the United States, nursing facility residents comprise fewer than 1% of the population but more than 40% of deaths due to Coronavirus Disease 2019 (COVID-19). Mitigating the enormous risk of COVID-19 to nursing home residents requires adequate data. The widely used Centers for Medicare & Medicaid Services (CMS) COVID-19 Nursing Home Dataset contains 2 derived statistics: Total Resident Confirmed COVID-19 Cases per 1000 Residents and Total Resident COVID-19 Deaths per 1000 Residents. These metrics provide a misleading picture, as facilities report cumulative counts of cases and deaths over different time periods but use a point-in-time measure as proxy for number of residents (number of occupied beds in a week), resulting in inflated statistics. We propose an alternative statistic to better illustrate the burden of COVID-19 cases and deaths across nursing facilities. DESIGN: Retrospective cohort study. SETTING AND PARTICIPANTS: Using the CMS Nursing Home Compare and COVID-19 Nursing Home Datasets, we examined facilities with star ratings and COVID-19 data passing quality assurance checks for each reporting period from May 31 to August 16, 2020 (n = 11,115). METHODS: We derived an alternative measure of the number of COVID-19 cases per 1000 residents using the net change in weekly census. For each measure, we compared predicted number of cases/deaths by overall star rating using negative binomial regression with constant dispersion, controlling for county-level cases per capita and nursing home characteristics. RESULTS: The average number of cases per 1000 estimated residents using our method is lower compared with the metric using occupied beds as proxy for number of residents (44.8 compared with 66.6). We find similar results when examining number of COVID-19 deaths per 1000 residents. CONCLUSIONS AND IMPLICATIONS: Future research should estimate the number of residents served in nursing facilities when comparing COVID-19 cases/deaths in nursing facilities. Identifying appropriate metrics for facility-level comparisons is critical to protecting nursing home residents as the pandemic continues.

Family Caregivers of Veterans Experience High Levels of Burden, Distress, and Financial Strain.

BACKGROUND/OBJECTIVES: To describe the caregiving experiences and physical and emotional needs of family members and friends who provide care to veterans with mental, physical, and cognitive comorbidities. DESIGN: Cross-sectional study. SETTING: National telephone surveys administered from 2017 to 2019. PARTICIPANTS: Family caregivers of veterans enrolled in the Veterans Affairs (VA) Program of General Caregiver Support Services between October 2016 and July 2018 who responded to a telephone survey (N = 1,509; response rate = 39%). MEASUREMENTS: We examined caregiver burden, depressive symptoms, financial strain, satisfaction with care, amount and duration of caregiving, life chaos, loneliness, and integration of caregiver with the healthcare team using validated instruments. We also collected caregiver demographic and socioeconomic characteristics and asked caregivers to identify the veteran's condition(s) and provide an assessment of the veteran's functioning. RESULTS: Average caregiver age was 62.2 (standard deviation [SD] = 13.7) and 69.8 (SD = 15.6) for veterans. Among caregivers, 76.7% identified at White, and 79.9% were married to the veteran. Caregivers reported having provided care for an average of 6.4 years and spending on average 9.6 hours per day and 6.6 days per week providing care. Average Zarit Subjective Burden score was 21.8 (SD = 9.4; range = 0-47), which is well above the cutoff for clinically significant burden (>16). Caregivers reported high levels of depressive symptoms; the sample average Center for Epidemiologic Studies Depression 10-item Scale score was 11.5 (SD = 7.1; range = 0-30). Caregivers also reported high levels of loneliness and financial strain. CONCLUSION: Caregivers who care for veterans with trauma-based comorbidities reported intensive caregiving and significant levels of distress, depressive symptoms, and other negative consequences. These caregivers require comprehensive support services including access to health care, financial assistance, and enhanced respite care. Planned expansion of VA caregiver support has the potential to provide positive benefits for this population and serve as a model for caregiver support programs outside the VA health care system.

Comprehensive support of family caregivers: Are there health system cost offsets?

OBJECTIVES: To examine the effect of the Department of Veterans Affairs' (VA) Program of Comprehensive Assistance for Caregivers (PCAFC) on total VA health care costs for Veterans. DATA SOURCES: VA claims. STUDY DESIGN: Using a pre-post cohort design with nonequivalent control group, we estimated the effect of PCAFC on total VA costs up through 6 years. The treatment group included Veterans (n = 32 394) whose caregivers enrolled in PCAFC. The control group included an inverse probability of treatment weighted sample of Veterans whose caregivers were denied PCAFC enrollment (n = 38 402). DATA EXTRACTION: May 2009-September 2017. PRINCIPAL FINDINGS: Total VA costs pre-PCAFC application date were no different between groups. Veterans in PCAFC were estimated to have $13 227 in VA costs in the first 6 months post-PCAFC application, compared to $10 806 for controls. Estimated VA costs for both groups decreased in the first 3 years with a narrowing, but persistent and significant, difference, through 5.5 years. No significant difference in VA health care costs existed at 6 years, approximately $10 000 each, though confidence intervals reflect significant uncertainty in cost differences at 6 years. CONCLUSIONS: Increased costs arose from increased outpatient costs of participants. Sample composition changes may explain lack of significance in cost differences at 6 years because these costs comprise of early appliers to PCAFC. Examining 10-year costs could elucidate whether there are long-term cost offsets from increased engagement in outpatient care.

Comprehensive Support for Family Caregivers: Impact on Veteran Health Care Utilization and Costs.

This study aimed to examine the early impact of the Program of Comprehensive Assistance for Family Caregivers (PCAFC) on Veteran health care utilization and costs. A pre-post cohort design including a nonequivalent control group was used to understand how Veterans' use of Veteran Affairs health care and total health care costs changed in 6-month intervals up to 3 years after PCAFC enrollment. The control group was an inverse probability of treatment weighted sample of Veterans whose caregivers applied for, but were not accepted into, PCAFC. Veterans in PCAFC had similar acute care utilization postenrollment when compared with those in the control group, but significantly greater primary, specialty, and mental health outpatient care use at least 30, and up to 36, months postenrollment. Estimated total health care costs for PCAFC Veterans were $1,500 to $3,400 higher per 6-month interval than for control group Veterans. PCAFC may have increased Veterans' access to care.