Importance Emergency department (ED) visits for people with dementia often involve care (including the admission or discharge decision) with lasting effects on quality of life. Home time—a claims-based measure of days alive and outside of institutional care—provides a patient-centered way to assess downstream outcomes of ED care in this population. Objective To examine variations in home time following an ED visit by patient, facility, and visit characteristics among veterans with dementia. Design, Setting, and Participants This national retrospective cohort study used US Department of Veterans Affairs (VA) health care system data sources. Participants were veterans aged 65 to 110 years with dementia with an eligible Veterans Health Administration ED visit in fiscal years 2017 (October 1, 2016, through September 30, 2017) and/or 2018 (October 1, 2017, through September 30, 2018). Data were analyzed from May 1, 2024, to May 15, 2025. Exposures Patient, ED facility, and ED visit factors. Main Outcomes and Measures Home time, operationalized for modeling as days not at home in the 180 days after the index ED visit. Associations between patient, ED facility, and ED visit characteristics and home time were assessed using a negative binomial model. Results The study included 51 707 veterans with dementia (mean [SD] age, 79.9 [8.59] years; 97.6% male; 52.2% married). The mean (SD) number of days not at home within 180 days was 21.7 (34.5). Of the total cohort, 4.5% never returned home in the 180 days after their ED visit, while 18.2% had all subsequent days at home. ED admission (vs discharge) disposition was the factor associated with the largest increase in days not at home (rate ratio [RR], 3.18; 95% CI, 3.08-3.29). Patient factors associated with more days not at home included very high frailty (RR, 1.27; 95% CI, 1.21-1.33), unhoused status (RR, 1.50; 95% CI, 1.39-1.63), unmarried status (never married: RR, 1.24 [95% CI, 1.16-1.32]; divorced, separated, or widowed: RR, 1.24 [95% CI, 1.20-1.28]), and depression (RR, 1.13; 95% CI, 1.09-1.17). Conclusions and Relevance The findings of this cohort study suggest that home time offers a patient-centered measure of post-ED outcomes for individuals with dementia. Future work should refine its application, particularly regarding the ED disposition decision, to better evaluate the long-term impact of ED care decisions.
Home Time After an Emergency Department Visit by People Living with Dementia
Abstract Background People living with dementia (PLWD) face short‐term risks following emergency department (ED) visits. However, the long‐term impacts of ED visits on PLWD quality of life are not well characterized. Home time‐ days alive and outside hospitals or other care settings‐ is an emerging measure that can reflect longer‐term outcomes. We aimed to identify patient and ED visit characteristics associated with variation in home time after an ED visit. Method Retrospective observational study of Veteran PLWD with ≥1 VA ED visit between 10/01/2016 and 09/30/2018. We used VA and CMS data sources to define veteran characteristics and outcomes. Primary outcome was home time in the 180 days after an ED visit, defined as days alive and not in an ED, inpatient, post‐acute, or a nursing home setting. We used a negative binomial model to evaluate the associations between covariates and home time with VAMC‐level random effects to account for correlation among patients at the same VAMC. Result Our final cohort comprised 51,707 Veteran PLWD, predominantly male (97.6%) and white (73.0%), with mean age 79.9 (SD 8.59). Most lived in urban areas (74.4%), and 52.2% were married. Characteristics associated with reduced home time included older age (RR 1.06, 95% CI 1.05‐1.07), never married (RR 1.24; 1.16‐1.32) or divorced/widowed (RR 1.24; 1.20, 1.28), depression (RR 1.13; 1.09, 1.17), and ED visits for chronic conditions (RR 1.13; 1.08, 1.18). Female sex (RR 0.88; 0.79‐0.97) and lower clinical frailty (RR 0.79; 0.75, 0.83) were associated with more home time. Conclusion Patient and ED visit characteristics impact home time up to 180 days after an ED visit. Older, frailer, unmarried, male patients and those presenting with chronic conditions experienced reduced home time, suggesting directions for targeted interventions. Efforts such as enhanced discharge planning and addressing psychosocial factors (e.g., depression) could improve quality of life.
ECONOMIC VALUE OF UNPAID FAMILY CAREGIVER TIME FOLLOWING HOSPITAL DISCHARGE AND AT END-OF-LIFE
Abstract Estimates of patient care costs often overlook the economic value of unpaid caregiving. This study aims to quantify the economic value of unpaid caregiving by rural FCGs. Using data from a multi-site randomized controlled trial evaluating Transitional Palliative Care (TPC) intervention for FCGs, this study quantifies the economic value of family caregiving in the six months following seriously ill care recipients’ hospital discharge using three valuation methods. Caregiving hours were self-reported by FCGs. The proxy cost approach assigned value to FCG hours using the national median home health aide wage. The unadjusted opportunity cost approach assigned value using the national median wage, by sex and education level. The adjusted opportunity cost approach assigned value by work force participation, using opportunity cost if employed and proxy cost otherwise. Of 282 FCGs, 94% were non-Hispanic White, 71% had a college degree, 56% were spouses, and 51% were in the workforce. FCG cost did not differ by treatment arm. FCGs of decedents compared to survivors reported significantly more hours per person-month (392 vs. 272, p< 0.001), resulting in higher median opportunity cost ($12,653 vs. $8,843, p< 0.001), proxy cost ($5,689 vs. $3,955, p< 0.001), and adjusted opportunity cost ($9,490 vs. $6,443, p< 0.001) per person-month. Proxy cost may undervalue FCG time, while opportunity cost may perpetuate labor market inequities. Policymakers must weigh trade-offs of different valuation methods. The high intensity of unpaid post-acute care, especially end-of-life, should be considered when designing policies and interventions to support unpaid FCG due to the economic impact on FCGs and employers.
Healthcare use and out‐of‐pocket costs for rural family caregivers and care recipients in a randomized controlled trial
Abstract Background Rural family caregivers (FCGs) in the United States often experience high economic costs. This randomized controlled trial compared a transitional palliative care intervention (TPC) to support FCGs of seriously ill care recipients (CRs) to an attention control condition. We evaluated the TPC's effect on healthcare use and out‐of‐pocket spending for both FCGs and CRs. Methods TPC FCGs received teaching, guidance, and counseling via video calls for 8 weeks following CR discharge from the hospital. After discharge, a research assistant called all FCGs once a month for up to 6 months or CR death to collect self‐reported healthcare utilization (e.g., outpatient, emergency department, and hospital), out‐of‐pocket healthcare spending (e.g., deductibles and coinsurance), and health‐related travel costs (e.g., transportation, lodging, food) for FCGs and CRs. Incidence rate ratios (IRRs) were estimated using negative binomial regressions. Results The study included 282 FCG–CR dyads across three U.S. states. Follow‐up over the 6‐month period was shortened by high CR mortality rates across both arms (29%), but was similar across arms. TPC reduced nights in the hospital for CR (IRR = 0.75; 95% confidence interval [CI] = 0.56–0. 99). Total out‐of‐pocket spending was not significantly different for TPC versus control. Across both groups, mean out‐of‐pocket spending for dyads was $1401.85, with healthcare payments contributing $1048.58 and transportation expenses contributing $136.79. TPC dyads reported lower lodging costs (IRR = 0.71; 95% CI = 0.56–0.89). Conclusions This study contributes to evidence that palliative care interventions reduce the number of nights in the hospital for seriously ill patients. Yet, overall rural FCGs and seriously ill CRs experience substantial out‐of‐pocket economic costs in the 6 months following hospitalization. Transitional care intervention design should consider impacts on patient and caregiver spending. Clinicaltrials.gov # is NCT03339271.
Impact of TBI on caregivers of veterans with TBI: Burden and interventions
This was a hypothesis-generating exploration of relationships between caregiver training during TBI/polytrauma rehabilitation and caregiver mental health. In this cross-sectional study, 507 informal caregivers to US service members with TBI who received inpatient rehabilitation care in a Veterans Affairs’ Polytrauma Rehabilitation Center from 2001 to 2009 completed a retrospective, self-report survey. Embedded in the survey were measures of caregiver mental health, including the National Institutes of Health’s Patient Reported Outcome Measurement Information System (PROMIS) Anxiety and Depression Short Forms, the Rosenberg Self-Esteem scale, and the Zarit Burden Short Form. Though no groups endorsed clinical levels, mental health symptoms varied by caregiver training category (Trained, Not Trained, and Did Not Need Training). Caregivers who did not receive training on how to navigate healthcare systems endorsed higher depression and burden and lower self-esteem than those who did. Caregivers who did not receive training in supporting their care recipients’ emotions endorsed higher anxiety, depression, and burden and lower self-esteem than those who did. Analyses also suggested a different association between training and mental health based on caregivers’ relationship to the care recipient and the intensity of care recipient needs. Potential hypotheses for testing in future studies raised by these findings are discussed.