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.

The many "costs" of transportation: Examining what cancer caregivers experience as transportation obstacles.

BACKGROUND: Transportation has been identified as a specific source of burden for cancer caregivers. This study examined cancer caregivers' subjective experiences and objectives costs associated with transportation over a 6-month period of providing end-of-life care to a family member or friend. METHODS: This was a multi-site longitudinal, prospective cohort study that followed 223 caregiver-patient dyads. Data were collected using biweekly, semi-structured interviews for up to 6 months and collection of all caregiving related receipts. Interviews were coded and analyzed using a comparative, iterative analysis and actual out of pockets costs were described using descriptive statistics. RESULTS: Over the 6-month study period most caregivers (n = 143; 74%) discussed transportation at one or more timepoints. Average biweekly transportations costs to caregivers were $43.6. Caregivers described (n = 56; 39%) multiple direct and indirect costs of transportation, and 58% (n = 84) discussed the need for transportations services or assistance at the institutional level. CONCLUSIONS: Caregivers described the multifaceted costs of transportation they experienced which are in line with previous work. Alongside descriptions of direct costs, caregivers described key opportunity costs, such as personal and work time forgone to transporting patients. Caregivers also made suggestions for institutional and/or civic based solutions to facilitate reliable modes of transportation, rather than individual-level intervention.

Effects of Implementation of a Supervised Walking Program in Veterans Affairs Hospitals : A Stepped-Wedge, Cluster Randomized Trial.

BACKGROUND: In trials, hospital walking programs have been shown to improve functional ability after discharge, but little evidence exists about their effectiveness under routine practice conditions. OBJECTIVE: To evaluate the effect of implementation of a supervised walking program known as STRIDE (AssiSTed EaRly MobIlity for HospitalizeD VEterans) on discharge to a skilled-nursing facility (SNF), length of stay (LOS), and inpatient falls. DESIGN: Stepped-wedge, cluster randomized trial. (ClinicalTrials.gov: NCT03300336). SETTING: 8 Veterans Affairs hospitals from 20 August 2017 to 19 August 2019. PATIENTS: Analyses included hospitalizations involving patients aged 60 years or older who were community dwelling and admitted for 2 or more days to a participating medicine ward. INTERVENTION: Hospitals were randomly assigned in 2 stratified blocks to a launch date for STRIDE. All hospitals received implementation support according to the Replicating Effective Programs framework. MEASUREMENTS: The prespecified primary outcomes were discharge to a SNF and hospital LOS, and having 1 or more inpatient falls was exploratory. Generalized linear mixed models were fit to account for clustering of patients within hospitals and included patient-level covariates. RESULTS: Patients in pre-STRIDE time periods (n = 6722) were similar to post-STRIDE time periods (n = 6141). The proportion of patients with any documented walk during a potentially eligible hospitalization ranged from 0.6% to 22.7% per hospital. The estimated rates of discharge to a SNF were 13% pre-STRIDE and 8% post-STRIDE. In adjusted models, odds of discharge to a SNF were lower among eligible patients hospitalized in post-STRIDE time periods (odds ratio [OR], 0.6 [95% CI, 0.5 to 0.8]) compared with pre-STRIDE. Findings were robust to sensitivity analyses. There were no differences in LOS (rate ratio, 1.0 [CI, 0.9 to 1.1]) or having an inpatient fall (OR, 0.8 [CI, 0.5 to 1.1]). LIMITATION: Direct program reach was low. CONCLUSION: Although the reach was limited and variable, hospitalizations occurring during the STRIDE hospital walking program implementation period had lower odds of discharge to a SNF, with no change in hospital LOS or inpatient falls. PRIMARY FUNDING SOURCE: U.S. Department of Veterans Affairs Quality Enhancement Research Initiative (Optimizing Function and Independence QUERI).

Family spillovers and long-term care insurance.

We examine how long-term care insurance (LTCI) affects informal care use and expectations among the insured individuals and co-residence and labor market outcomes of their adult children. We address the endogeneity of LTCI coverage by instrumenting for LTCI with changes in state tax treatment of LTCI insurance policies. We do not find evidence of reductions in informal care use over a horizon of approximately eight years. However, we find that LTCI coverage reduces parents' perceptions of the willingness of their children to care for them in the future and that the behavior of adult children changes, with LTCI resulting in lower likelihoods of adult children co-residing and stronger labor market attachment. These findings provide empirical support for the presence of spillovers of LTCI on the economic behaviors of family members.

Determinants of inter-organizational implementation success: A mixed-methods evaluation of Veteran Directed Care.

BACKGROUND: Veteran Directed Care (VDC) aims to keep Veterans at risk for nursing home placement in their communities. VA medical centers (VAMCs) purchase VDC from third-party organizational providers who then partner with them during implementation. Experiences with VDC implementation have varied. OBJECTIVES: We sought to identify conditions differentiating partnerships with higher enrollment (implementation success). METHODS: We conducted a case-based study with: qualitative data on implementation determinants two and eight months after program start, directed content analysis to assign numerical scores (-2 strong barrier to +2 strong facilitator), and mathematical modeling using Coincidence Analysis (CNA) to identify key determinants of implementation success. Cases consisted of VAMCs and partnering non-VAMC organizations who started VDC during 2017 or 2018. The Consolidated Framework for Implementation Research (CFIR) guided analysis. RESULTS: Eleven individual organizations within five partnerships constituted our sample. Two CFIR determinants- Networks & Communication and External Change Agent-uniquely and consistently identified implementation success. At an inter-organizational partnership level, Networks & Communications and External Change Agent +2 (i.e., present as strong facilitators) were both necessary and sufficient. At a within-organization level, Networks & Communication +2 was necessary but not sufficient for the non-VAMC providers, whereas External Change Agent +2 was necessary and sufficient for VAMCs. CONCLUSION: Networks & Communication and External Change Agent played difference-making roles in inter-organizational implementation success, which differ by type of organization and level of analysis. IMPLICATIONS: This multi-level approach identified crucial difference-making conditions for inter-organizational implementation success when putting a program into practice requires partnerships across multiple organizations.

Predictors of discharge from the VA Caregiver Support Program.

OBJECTIVES: The Department of Veterans Affairs (VA) Program of Comprehensive Assistance for Family Caregivers (PCAFC) is a clinical program providing training, a monthly stipend, and other services to caregivers of qualifying post-9/11 veterans with service-related injuries. Veteran-caregiver discharge from the program occurs when veteran recovery is achieved, participation is no longer in the veteran's best interest, or caregiving ceases. Public scrutiny about potentially inappropriate discharges resulted in a nationwide freeze on all discharges. PCAFC expanded to pre-9/11 veterans in October 2020; thus, lessons learned can continue to inform the expanded program. We pursued 3 objectives: (1) describe the discharge rate, reasons for discharge, and veteran and caregiver characteristics by discharge status; (2) identify factors associated with discharge from PCAFC nationally; and (3) characterize network variation in discharge predictors. STUDY DESIGN: Retrospective observational study using VA administrative data from fiscal year (FY) 2011 to FY 2017. METHODS: Using multivariable Cox proportional hazards regression, we examined factors associated with PCAFC discharge among veterans and caregivers enrolled in PCAFC during FY 2011 to FY 2016. RESULTS: A total of 40.5% of all participants were discharged. Nonspouse caregivers and those applying in later years had the highest rates of discharge; spouse caregivers and those applying in earlier years had the lowest rates of discharge. In 4 of 18 networks, caregivers of Black veterans faced higher rates of discharge compared with caregivers of White veterans, and in 1 network, they faced lower rates of discharge. Substantial variability in rates of discharge was also observed across Veterans Integrated Service Networks. CONCLUSIONS: Training on clinically appropriate discharge criteria could improve practice and increase equity.

Self-Organization of Interprofessional Staff to Improve Mobility of Hospitalized Patients with STRIDE: a Complexity Science-Informed Qualitative Study.

BACKGROUND: Inpatient mobility programs can help older adults maintain function during hospitalization. Changing hospital practice can be complex and require engagement of various staff levels and disciplines; however, we know little about how interprofessional teams organize around implementing such interventions. Complexity science can inform approaches to understanding and improving multidisciplinary collaboration to implement clinical programs. OBJECTIVE: To examine, through a complexity science lens, how clinical staff's understanding about roles in promoting inpatient mobility evolved during implementation of the STRIDE (assiSTed eaRly mobIlity for hospitalizeD older vEterans) hospital mobility program. DESIGN: Qualitative study using semi-structured interviews. PARTICIPANTS: Ninety-two clinical staff at eight Veterans Affairs hospitals. INTERVENTIONS: STRIDE is a supervised walking program for hospitalized older adults designed to maintain patients' mobility and function. APPROACH: We interviewed key staff involved in inpatient mobility efforts at each STRIDE site in pre- and post-implementation periods. Interviews elicited staff's perception of complexity-science aspects of inpatient mobility teams (e.g., roles over time, team composition). We analyzed data using complexity science-informed qualitative content analysis. KEY RESULTS: We identified three key themes related to patterns of self-organization: (1) individuals outside of the "core" STRIDE team voluntarily assumed roles as STRIDE advocates, (2) leader-champions adapted their engagement level to match local implementation team needs during implementation, and (3) continued leadership support and physical therapy involvement were key factors for sustainment. CONCLUSIONS: Staff self-organized around implementation of a new clinical program in ways that were responsive to changing program and contextual needs. These findings demonstrate the importance of effective self-organization for clinical program implementation. Researchers and practitioners implementing clinical programs should allow for, and encourage, flexibility in staff roles in planning for implementation of a new clinical program, encourage the development of advocates, and engage leaders in program planning and sustainment efforts.

Evaluation of a geriatrics primary care model using prospective matching to guide enrollment.

BACKGROUND: Few definitive guidelines exist for rigorous large-scale prospective evaluation of nonrandomized programs and policies that require longitudinal primary data collection. In Veterans Affairs (VA) we identified a need to understand the impact of a geriatrics primary care model (referred to as GeriPACT); however, randomization of patients to GeriPACT vs. a traditional PACT was not feasible because GeriPACT has been rolled out nationally, and the decision to transition from PACT to GeriPACT is made jointly by a patient and provider. We describe our study design used to evaluate the comparative effectiveness of GeriPACT compared to a traditional primary care model (referred to as PACT) on patient experience and quality of care metrics. METHODS: We used prospective matching to guide enrollment of GeriPACT-PACT patient dyads across 57 VA Medical Centers. First, we identified matches based an array of administratively derived characteristics using a combination of coarsened exact and distance function matching on 11 identified key variables that may function as confounders. Once a GeriPACT patient was enrolled, matched PACT patients were then contacted for recruitment using pre-assigned priority categories based on the distance function; if eligible and consented, patients were enrolled and followed with telephone surveys for 18 months. RESULTS: We successfully enrolled 275 matched dyads in near real-time, with a median time of 7 days between enrolling a GeriPACT patient and a closely matched PACT patient. Standardized mean differences of < 0.2 among nearly all baseline variables indicates excellent baseline covariate balance. Exceptional balance on survey-collected baseline covariates not available at the time of matching suggests our procedure successfully controlled many known, but administratively unobserved, drivers of entrance to GeriPACT. CONCLUSIONS: We present an important process to prospectively evaluate the effects of different treatments when randomization is infeasible and provide guidance to researchers who may be interested in implementing a similar approach. Rich matching variables from the pre-treatment period that reflect treatment assignment mechanisms create a high quality comparison group from which to recruit. This design harnesses the power of national administrative data coupled with collection of patient reported outcomes, enabling rigorous evaluation of non-randomized programs or policies.

Association of Medicaid Expansion Under the Patient Protection and Affordable Care Act With Use of Long-term Care.

Importance: Medicaid expansion is associated with increased access to health services, increased quality of medical care delivered, and reduced mortality, but little is known about its association with use of long-term care. Objective: To examine the association of Medicaid expansion under the Patient Protection and Affordable Care Act (ACA) with long-term care use among newly eligible low-income adults and among older adults whose eligibility did not change. Design, Setting, and Participants: This difference-in-difference cohort study used data from the Health and Retirement Study, a nationally representative longitudinal survey of persons 50 years or older. Long-term care use from 2008 to 2012 was compared with use from 2014 to 2016 among low-income adults aged 50 to 64 years without Medicare coverage residing in states in which Medicaid coverage expanded in 2014 and those living in states without expansion. Low-income adults who were covered by Medicare and were ineligible for expanded Medicaid were also included in the analysis. Data were analyzed from January 15, 2018, to December 31, 2019. Exposures: Residence in a state with Medicaid expansion in 2014. Main Outcomes and Measures: Any home health care use or any nursing home use in 2014 or 2016. All estimates are weighted to account for the Health and Retirement Study sampling design. Results: Among the 891 individuals likely eligible for expanded Medicaid, the mean (SD) age was 55.2 (3.1) years; 534 (53.4%) were women, 482 (49.5%) were married, and 661 (45.9%) were White non-Hispanic. Before the ACA-funded Medicaid expansion, 0.4% (95% CI, -0.3% to 1.1%) in expansion states and 1.0% (95% CI, -0.1% to 2.2%) in nonexpansion states used nursing homes, and 1.9% (95% CI, 0.4%-3.4%) in expansion states and 7.1% (95% CI, 4.7%-9.5%) in nonexpansion states used any formal home care. The ACA-funded Medicaid expansion was associated with an increase of 4.4 percentage points (95% CI, 2.8-6.1 percentage points) in the probability of any long-term care use among low-income, middle-aged adults, with increases in home health use (3.8 percentage points; 95% CI, 2.0-5.6 percentage points) and in any nursing home use (2.1 percentage points; 95% CI, 0.9-3.3 percentage points). Conclusions and Relevance: In this study, ACA-funded Medicaid expansion was associated with an increase in any long-term care use among newly eligible low-income, middle-aged adults, suggesting that the population covered by the Medicaid expansion may have had unmet long-term care needs before expansion.

Advancing the science of population-based measures of home-time.

The "home time" measure is gaining appeal in evaluating outcomes for multiple patient populations including post-surgery or intervention and the last 6 months of life. Advancing the science of home time measures will require obtaining the perspectives of patients and caregivers to arrive at a population-based measure of quality of life. Additionally, measure development requires considerations of what care settings denote time away from home, observation period, and thresholds that are clinically significant. We explore examples and challenges from current research and our own experience. Being able to advance such measures could also inform payment models and policy design.

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.

Essential Long-Term Care Workers Commonly Hold Second Jobs and Double- or Triple-Duty Caregiving Roles.

OBJECTIVES: Long-term care (LTC) facilities are particularly dangerous places for the spread of COVID-19 given that they house vulnerable high-risk populations. Transmission-based precautions to protect residents, employees, and families alike must account for potential risks posed by LTC workers' second jobs and unpaid care work. This observational study describes the prevalence of their (1) second jobs, and (2) unpaid care work for dependent children and/or adult relatives (double- and triple-duty caregiving) overall and by occupational group (registered nurses [RNs], licensed practical nurses [LPNs], or certified nursing assistants [CNAs]). DESIGN: A descriptive secondary analysis of data collected as part of the final wave of the Work, Family and Health Study. SETTING: Thirty nursing home facilities located throughout the northeastern United States. PARTICIPANTS: A subset of 958 essential facility-based LTC workers involved in direct patient care. MEASUREMENTS: We present information on LTC workers' demographic characteristics, health, features of their LTC occupation, additional paid work, wages, and double- or triple-duty caregiving roles. RESULTS: Most LTC workers were CNAs, followed by LPNs and RNs. Overall, more than 70% of these workers agreed or strongly agreed with this statement: "When you are sick, you still feel obligated to come into work." One-sixth had a second job, where they worked an average of 20 hours per week, and more than 60% held double- or triple-duty caregiving roles. Additional paid work and unpaid care work characteristics did not significantly differ by occupational group, although the prevalence of second jobs was highest and accompanying work hours were longest among CNAs. CONCLUSION: LTC workers commonly hold second jobs along with double- and triple-duty caregiving roles. To slow the spread of COVID-19, both the paid and unpaid activities of these employees warrant consideration in the identification of appropriate clinical, policy, and informal supports. J Am Geriatr Soc 68:1657-1660, 2020.

How Accurately Do Patients and Their Care Partners Report Results of Amyloid-ß PET Scans for Alzheimer's Disease Assessment?

BACKGROUND: Amyloid-ß PET scans will likely become an integral part of the diagnostic evaluation for Alzheimer's disease if Medicare approves reimbursement for the scans. However, little is known about patients' and their care partners' interpretation of scan results. OBJECTIVE: This study seeks to understand how accurately patients with mild cognitive impairment (MCI) or dementia and their care partners report results of amyloid-ß PET scans and factors related to correct reporting. METHODS: A mixed-methods approach was used to analyze survey data from 1,845 patient-care partner dyads and responses to open-ended questions about interpretation of scan results from a sub-sample of 200 dyads. RESULTS: Eighty-three percent of patients and 85% of care partners correctly reported amyloid-ß PET scan results. Patients' higher cognitive function was associated with a small but significant decrease in the predicted probability of not only patients accurately reporting scan results (ME: -0.004, 95% CI: -0.007, -0.000), but also care partners accurately reporting scan results (ME: -0.006, 95% CI: -0.007, -0.001), as well as decreased concordance between patient and care partner reports (ME: -0.004, 95% CI: -0.007, -0.001). Content analysis of open-ended responses found that participants who reported the scan results incorrectly exhibited more confusion about diagnostic terminology than those who correctly reported the scan results. CONCLUSION: Overall, patients with MCI or dementia showed high rates of accurate reporting of amyloid-ß PET scan results. However, responses to questions about the meaning of the scan results highlight the need for improved provider communication, including providing written explanations and better prognostic information.

Family Caregiver Skills Training to Improve Experiences of Care: a Randomized Clinical Trial.

OBJECTIVE: To evaluate the effectiveness of Helping Invested Families Improve Veterans' Experiences Study (HI-FIVES), a skills training program for caregivers of persons with functional or cognitive impairments. DESIGN: A two-arm RCT. SETTING: Single Veterans Affairs Medical Center. PARTICIPANTS: Patients and their primary caregivers referred in the past 6 months to home and community-based services or geriatrics clinic. INTERVENTION: All caregivers received usual care. Caregivers in HI-FIVES also received five training calls and four group training sessions. MAIN MEASURES: Cumulative patient days at home 12 months post-randomization, defined as days not in an emergency department, inpatient hospital, or post-acute facility. Secondary outcomes included patients' total VA health care costs, caregiver and patient rating of the patient's experience of VA health care, and caregiver depressive symptoms. RESULTS: Of 241 dyads, caregivers' (patients') mean age was 61 (73) years, 54% (53%) Black and 89% (4%) female. HI-FIVES was associated with a not statistically significant 9% increase in the rate of days at home (95% CI 0.72, 1.65; mean difference 1 day over 12 months). No significant differences were observed in health care costs or caregiver depressive symptoms. Model-estimated mean baseline patient experience of VA care (scale of 0-10) was 8.43 (95% CI 8.16, 8.70); the modeled mean difference between HI-FIVES and controls at 3 months was 0.29 (p = .27), 0.31 (p = 0.26) at 6 months, and 0.48 (p = 0.03) at 12 months. For caregivers, it was 8.34 (95% CI 8.10, 8.57); the modeled mean difference at 3 months was 0.28 (p = .18), 0.53 (p < .01) at 6 months, and 0.46 (p = 0.054) at 12 months. CONCLUSIONS: HI-FIVES did not increase patients' days at home; it showed sustained improvements in caregivers' and patients' experience of VA care at clinically significant levels, nearly 0.5 points. The training holds promise in increasing an important metric of care quality-reported experience with care.

Comprehensive Family Caregiver Support and Caregiver Well-Being: Preliminary Evidence From a Pre-post-survey Study With a Non-equivalent Control Group.

Introduction: In May 2010, the Caregivers and Veterans Omnibus Health Services Act of 2010, was signed into law in the United States, establishing the Program of Comprehensive Assistance for Family Caregivers (PCAFC) provided through the VA Caregiver Support Program (CSP). Prior to this program, over half of family caregivers reported being untrained for the tasks they needed to provide. The training through PCAFC represents the largest effort to train family caregivers in the U.S., and the features of the program, specifically a monthly stipend to caregivers and access to a Caregiver Support Coordinator at each VA medical center nationally, make it the most comprehensive caregiver support program ever enacted in the U.S. Methods: The purpose of this study is to examine the association between PCAFC participation and caregiver well-being following enrollment, comparing participating PCAFC caregivers to caregivers who applied to but were not approved for PCAFC participation (non-participants). Well-being is defined using three diverse but related outcomes: depressive symptoms, perceived financial strain, and perceived quality of the Veteran's health care. Additional well-being measures also examined include the Zarit Burden Inventory and positive aspects of caregiving. Results: The survey sample comprised of 92 caregivers approved for PCAFC and 66 caregivers not approved. The mean age of responding caregivers was 45; over 90% of caregivers were female; and over 80% of caregivers were married in both groups. We find promising trends in well-being associated with PCAFC participation. First, the perception of financial strain declined among participants compared to non-participants. Second, while depressive symptoms did not improve for the PCAFC caregivers, depressive symptoms increased among non-participants. Third, perceived quality of the Veteran's VA healthcare was no different between participants and non-participants. However, the 158 returned surveys reflect only a 5% response rate; hence this evidence is preliminary. Conclusion: Despite cautioning that results be interpreted as preliminary, this study provides unique descriptive information about young caregivers of U.S. post-9/11 Veterans, and offers a first step in filling the evidence gap about how comprehensive caregiver support in the U.S. may affect caregiver well-being. These preliminary findings should be explored and validated in a larger sample.

Invisible partners in care: Snapshot of well-being among caregivers receiving comprehensive support from Veterans Affairs.

BACKGROUND AND AIMS: Since May 2011, over 23 000 caregivers of Veterans seriously injured on or after September 11, 2001 have enrolled in the Program of Comprehensive Assistance for Family Caregivers (PCAFC). PCAFC provides caregivers training, a stipend, and access to health care. The aim of this study is to describe the characteristics of caregivers in PCAFC and examine associations between caregiver characteristics and caregiver well-being outcomes. METHODS: We sent a web survey invitation to 10 000 PCAFC caregivers enrolled as of September 2015. Using linear and logistic regressions, we examine associations between PCAFC caregiver characteristics and caregiver outcomes: perceived financial strain, depressive symptoms (Center for Epidemiologic Studies Depression Scale [CESD-10]), perceived quality of Veteran's Veterans Health Administration (VHA) care, and self-reported caregiver health. RESULTS: We had complete survey data for 899 respondents. Since becoming a caregiver, approximately 50% of respondents reported reducing or stopping work. Mean time spent providing care was 3.8 years (median 3, IQR 1-5) with an average of 4.9 weekdays (median 5, IQR 5-5) and 1.9 weekend days (median 2, IQR 2-2). The mean CESD-10 score was 8.2 (median 7, 4-12), at the cutoff for screening positive for depressive symptoms. A longer duration of caregiving was associated with having 0.08 increase in rating of financial strain (95% CI, 0.02-0.14). Caregiver rating of the Veteran's health status as "fair" or better was a strong predictor of better caregiver outcomes, ie, self-reported caregiver health. However, higher levels of education were associated with worse caregiver outcomes, ie, lower global satisfaction with VHA care, higher CESD-10 score, and higher rating of financial strain. CONCLUSIONS: Higher depressive symptoms among longer duration caregivers, coupled with high rates of reductions in hours worked, suggest interventions are needed to address the long-term emotional and financial needs of these caregivers of post-9/11 Veterans and identify subpopulations at risk for worse outcomes.

What is the marginal benefit of payment-induced family care? Impact on Medicaid spending and health of care recipients.

Research on home-based long-term care has centered almost solely on the costs; there has been very little, if any, attention paid to the relative benefits. This study exploits the randomization built into the Cash and Counseling Demonstration and Evaluation program that directly impacted the likelihood of having family involved in home care delivery. Randomization in the trial is used as an instrumental variable for family involvement in care, resulting in a causal estimate of the effect of changing the combination of home health-care providers on health-care utilization and health outcomes of the beneficiary. We find that some family involvement in home-based care significantly decreases health-care utilization: lower likelihood of emergency room use, Medicaid-financed inpatient days, any Medicaid hospital expenditures, and fewer months with Medicaid-paid inpatient use. We find that individuals who have some family involved in home-based care are less likely to have several adverse health outcomes within the first 9 months of the trial, including lower prevalence of infections, bedsores, or shortness of breath, suggesting that the lower utilization may be due to better health outcomes.