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.

Memory care reduces nursing home admissions among assisted-living residents with dementia.

INTRODUCTION: We compare nursing-home and hospital admissions among residents with Alzheimer's disease and related dementias (ADRD) in memory-care assisted living to those in general assisted living. METHODS: Retrospective study of Medicare beneficiaries with ADRD in large (>25 bed) assisted-living communities. We compared admission to a hospital, to a nursing home, and long-term (>90 day) admission to a nursing home between the two groups, using risk differences and survival analysis. RESULTS: Residents in memory-care assisted living had a lower adjusted risk of hospitalization (risk difference = -1.8 percentage points [P = .014], hazard ratio = 0.93 [0.87-1.00]), a lower risk of nursing-home admission (risk difference = -2.2 percentage points [P < .001], hazard ratio = 0.87 [-.79-0.95]), and a lower risk of a long-term nursing home admission (risk difference = -1.1 percentage points [P < .001], hazard ratio = 0.71 [0.57-0.88]). DISCUSSION: Memory care is associated with reduced rates of nursing-home placement, particularly long-term stays, compared to general assisted living.

Research Letter: Characterization of Older Adults Hospitalized With Traumatic Brain Injury Admitted to Long-Term Acute Care Hospitals.

OBJECTIVE: To describe patient, hospital, and geographic characteristics of older adult Medicare beneficiaries hospitalized with traumatic brain injury (TBI) and admitted to long-term acute care hospitals (LTACHs). SETTING: Acute hospital and LTACH facilities. PARTICIPANTS: In total, 15 148 Medicare beneficiaries 65 years and older with an acute TBI hospitalization who were discharged to an LTACH. DESIGN: This retrospective cohort study used data from Centers for Medicare & Medicaid Services' Medicare Enrollment and Provider Analysis and Review data files from 2011 to 2016. MAIN MEASURES: Patient variables (age, sex, premorbid health burden, medical complications and procedures), hospital variables (for-profit status, bed size), and state/regional geographic variation associated with LTACH TBI admission. RESULTS: Older adult Medicare beneficiaries admitted to LTACH facilities following TBI hospitalization were on average 77.1 years old and predominantly White males. In total, 94.6% of the sample had 2+ multimorbidities present during acute hospitalization. Average acute hospital length of stay of the sample was 19.4 days, and rates of acute mechanical ventilation of any duration and tracheostomy procedures were 56.6% and 40%, respectively. Only 4.1% of patients seen in LTACHs were discharged home after LTACH stay; the primary discharge disposition was skilled nursing facilities (41.3%). Geographic analyses indicated that selected Southern and Midwestern states had the greatest number of LTACH facilities and proportion of LTACH admissions. CONCLUSIONS: There has been limited characterization of the hospitalized TBI population admitted to LTACHs. Our findings among older adult Medicare beneficiaries suggest this population is highly medically complex and are seldom discharged home after their LTACH stay. There are also notable geographic variations in LTACH TBI admissions across the United States. More research is warranted to understand long-term functional outcomes among this population.

Functional motor improvement during inpatient rehabilitation among older adults with traumatic brain injury.

BACKGROUND: Older adults comprise an increasingly large proportion of patients with traumatic brain injury (TBI) receiving care in inpatient rehabilitation facilities (IRF). However, high rates of comorbidities and evidence of declining preinjury health among older adults who sustain TBI raise questions about their ability to benefit from IRF care. OBJECTIVES: To describe the proportion of older adults with TBI who exhibited minimal detectable change (MDC) and a minimally clinically important difference (MCID) in motor function from IRF admission to discharge; and to identify characteristics associated with clinically meaningful improvement in motor function and better discharge functional status. DESIGN: This retrospective cohort study used Medicare administrative data probabilistically linked to the National Trauma Data Bank to estimate the proportion of patients whose motor function improved during inpatient rehabilitation and identify factors associated with meaningful improvement in motor function and motor function at discharge. SETTING: Inpatient rehabilitation facilities in the United States. PATIENTS: Fee-for-service Medicare beneficiaries with TBI. MAIN OUTCOME MEASURES: Minimal Detectable Change (MDC) and Minimally Clinically Important Difference (MCID) in the Functional Independence Measure motor (FIM-M) score from admission to discharge, and FIM-M score at IRF discharge. RESULTS: From IRF admission to discharge 84% of patients achieved the MDC threshold, and 68% of patients achieved the MCID threshold for FIM-M scores. Factors associated with a higher probability of achieving the MCID for FIM-M scores included better admission motor and cognitive function, lower comorbidity burden, and a length of stay longer than 10 days but only among individuals with lower admission motor function. Older age was associated with a lower FIM-M discharge score, but not the probability of achieving the MCID in FIM-M score. CONCLUSION: Older adults with TBI have the potential to improve their motor function with IRF care. Baseline functional status and comorbidity burden, rather than acute injury severity, should be used to guide care planning.

State Medicaid Financing and Access to Large Assisted Living Settings for Medicare-Medicaid Dual-Eligibles.

Assisted living has become more widely used by dual-eligible Medicare beneficiaries as states try to rebalance their long-term services and supports away from institutional (nursing home) care. In an analysis of 2014 Medicare data for 506,193 adults who live in large (25+ beds) assisted living communities, we found wide variability among states in the share of assisted living residents who were dual-eligible, ranging from 6% in New Hampshire to over 40% in New York. This variation is strongly correlated with the Medicaid support for assisted living care: In states with a Medicaid state plan option covering services in assisted living or both a state plan and waiver, the percent of assisted living residents with dual-eligibility was more than 10 percentage points higher than in states with neither a state plan nor waiver. Findings provide a basis for understanding the role of Medicaid financing in access to assisted living for duals.

Characterizing Emergency Department Use in Assisted Living.

OBJECTIVES: Little is known about emergency department (ED) utilization among the nearly 1 million older adults residing in assisted living (AL) settings. Unlike federally regulated nursing homes, states create and enforce AL regulations with great variability, which may affect the quality of care provided. The objective of this study was to examine state variability in all-cause and injury-related ED use among residents in AL. DESIGN: Observational retrospective cohort study. SETTING AND PARTICIPANTS: We identified a cohort of 293,336 traditional Medicare beneficiaries residing in larger AL communities (25+ beds). METHODS: With Medicare enrollment and claims data, we identified ED visits and classified those because of injury. We present rates of all-cause and injury-related ED use per 100 person-years in AL, by state, adjusting for age, sex, race, dual-eligibility, and chronic conditions. RESULTS: Risk-adjusted state rates of all-cause ED visits ranged from 100.9 visits/100 AL person-years [95% confidence interval (CI) 92.8, 109.9] in New Mexico to 162.3 visits/100 AL person-years (95% CI 154.0, 174.7) in Rhode Island. The risk-adjusted rate of injury-related ED visits ranged from 18.7 visits/100 AL person-years (95% CI 17.2, 20.3) in New Mexico to 35.7 visits/100 AL person-years (95% CI 34.7, 36.8) in North Carolina. CONCLUSIONS AND IMPLICATIONS: We observed significant variability among states in all-cause and injury-related ED use among AL residents. There is an urgent need to better understand why this variability is occurring to prevent avoidable visits to the ED.

Developments in the Market for Assisted Living: Residential Care Availability in 2017.

OBJECTIVES: Describe how the availability of assisted living (AL) and dementia-specific AL vary across counties and correlate with demographic and socioeconomic characteristics. DESIGN: Maps, univariate statistics, and standardized mean differences show the differences between counties with high and low levels of AL market penetration, and between counties with and without dementia-specific AL. SETTING AND PARTICIPANTS: Data collected from state agencies on licensed AL communities, capacity, and geographic location, and population characteristics from the Area Health Resource file. We include novel and previously undescribed data on dementia-specific AL licenses in 21 states. MEASURES: AL market penetration is reported as the number of AL units or beds per 1000 persons over age 65 years in a county. RESULTS: In comparison to counties with the lowest AL penetration, high-penetration counties had higher high school and college education attainment (mean 25.3% vs 18.5%) and median annual income ($56,000 vs $46,800), and lower poverty (12.8% vs 17.3%) and unemployment rates (3.9% vs 5.1%). Compared to counties with AL but no dementia-specific care, counties with dementia care had substantially higher college attainment (24.6% vs 17.7%) and had higher urbanity index (3.8 vs 5.6 on a 1-9 scale, 1 most urban). Counties with dementia care also had, on average, 16% more in median household income ($54,200 vs $46,400) and 40% greater home value ($159,800 vs. $113,600). CONCLUSIONS AND IMPLICATIONS: Large socioeconomic disparities persist among counties without any AL or low penetration of AL in their borders in comparison to those with high AL penetration, as well as between counties with and without dementia-specific AL communities. There may be a mismatch in need and availability of residential care options for older adults with Alzheimer's disease and related dementias that contributes to the disproportionate share of racial/ethnic minorities with dementia in nursing homes. Lack of available AL beds in the communities where Medicaid individuals reside could make rebalancing efforts doubly difficult, in that Medicaid enrollees may be reluctant to move out of their neighborhoods.

Changes in Long-Term Care Markets: Assisted Living Supply and the Prevalence of Low-Care Residents in Nursing Homes.

OBJECTIVES: To assess the effect of changes in assisted living (AL) capacity within a market on prevalence of residents with low care needs in nursing homes. DESIGN: Retrospective, longitudinal analysis of nursing home markets. SETTING AND PARTICIPANTS: Twelve thousand two hundred fifity-one nursing homes in operation during 2007 and 2014. MEASUREMENTS: We analyzed the percentage of residents in a nursing home who qualified as low-care. For each nursing home, we constructed a market consisting of AL communities, Medicare beneficiaries, and competing nursing homes within a 15-mile radius. We estimated the effect of change in AL beds on prevalence of low-care residents using multivariate linear models with year and nursing home fixed effects. RESULTS: The supply of AL beds increased by an average 258 beds per nursing home market (standard deviation = 591) during the study period. The prevalence of low-care residents decreased from an average of 13.0% (median 10.5%) to 12.2% (median 9.5%). In adjusted models, a 100-bed increase in AL supply was associated with a decrease in low-care residents of 0.041 percentage points (P = .026), controlling for changes in market and nursing home characteristics, county demographics, and year and nursing home fixed effects. In markets with a high percentage of its Medicare beneficiaries (≥14%) dual eligible for Medicaid, the effect of AL is stronger, with a 0.066-percentage point decrease per 100 AL beds (P = .026) vs a 0.016-percentage point decrease in low-duals markets (P = .48). CONCLUSIONS AND IMPLICATIONS: Our analysis suggests that some of the growth in AL capacity serves as a substitute for nursing homes for patients with low care needs. Furthermore, the effects are concentrated in markets with an above-average proportion of beneficiaries with dual Medicaid eligibility.

State Variability in the Prevalence and Healthcare Utilization of Assisted Living Residents with Dementia.

OBJECTIVES: Almost 1 million older and disabled adults who require long-term care reside in assisted living (AL), approximately 40% of whom have a diagnosis of Alzheimer's disease and related dementias (ADRD). States vary in their regulations specific to dementia care that may influence the presence of residents with ADRD in AL and their outcomes. The objectives of this study were to describe the state variability in the prevalence of ADRD among Medicare beneficiaries residing in larger (25+ bed) ALs and their healthcare utilization. DESIGN: Retrospective observational national study. PARTICIPANTS: National cohort of 293,336 Medicare fee-for-service enrollees residing in larger (25+ bed) ALs in 2016 and 2017 including 88,867 (30.3%) residents with ADRD. We compared this cohort's characteristics and healthcare utilization with that of individuals with ADRD who resided in nursing homes (NHs; n = 602,521) and the community (n = 2,074,420). METHODS: Medicare enrollment data, claims, and the NH Minimum Data Set were used to describe differences among ADRD patients in AL, NHs, and the community. We present rates of NH admission and hospitalization, by state, adjusting for age, sex, race, dual eligibility, and chronic conditions. RESULTS: The prevalence of ADRD among AL residents varied by state, ranging from 24% to 47%. In 2017, AL residents with ADRD had higher rates of NH admission than their community-dwelling counterparts (adjusted national average = 24%, ranging from 14% to 35% among states). AL residents with ADRD had higher rates of hospitalization (38%) than populations in either NHs (29%) or the community (34%), and ranged from 29% to 45% of residents among states. CONCLUSION: These findings have implications for states as they regulate AL and for healthcare professionals whose patients reside in AL. Future work is needed to understand specific elements of states' regulatory environments and local markets that may impact access and outcomes for this vulnerable population of residents with ADRD. J Am Geriatr Soc 68:1504-1511, 2020.

State Variability in Assisted Living Residents' End-of-Life Care Trajectories.

OBJECTIVE: A growing and increasingly vulnerable population resides in assisted living. States are responsible for regulating assisted living and vary in their requirements. Little is known about how this variability translates to differences in the dying experiences of assisted living residents. The objective of this study is to describe assisted living residents' end-of-life care trajectories and how they vary by state. DESIGN: Observational retrospective cohort study. SETTING AND PARTICIPANTS: Using Medicare data and a methodology developed to identify beneficiaries residing in larger assisted living communities (25+ beds), we identified a cohort of 40,359 assisted living residents in the continental United States enrolled in traditional Medicare and who died in 2016. METHODS: We used Medicare data and the Residential History File to examine assisted living residents' locations of care and services received in the last 30 days of life. RESULTS: Nationally, 57% of our cohort died outside of an institutional setting, that is, hospital or nursing home (n = 23,165), 18,396 of whom received hospice at the time of death. Rates of hospitalization and transition to a nursing home increased during the last 30 days of life. We observed significant interstate variability in the adjusted number of days spent in assisted living in the month before death [from 13.6 days (95% confidence interval [CI] 11.8, 15.4) in North Dakota to 24.0 days (95% CI 22.7, 25.2) in Utah] and wider variation in the adjusted number of days receiving hospice in the last month of life, ranging from 2.1 days (95% CI 1.0, 3.2) in North Dakota to 13.8 days (95% CI 12.1, 15.5) in Utah. CONCLUSIONS AND IMPLICATIONS: Findings suggest that assisted living residents' dying trajectories vary significantly by state. To ensure optimal end-of-life outcomes for assisted living residents, state policy makers should consider how their regulations influence end-of-life care in assisted living, and future research should examine factors (eg, state regulations, market characteristics, provider characteristics) that may enable assisted living residents to die in place and contribute to differential access to hospice services.

Home Health Utilization in Assisted Living Settings.

Home health agencies (HHAs) are one of the most commonly used third-party providers in the assisted living (AL) setting. One way ALs may be potentially able to meet the needs of their residents despite increased impairment is through supplementing the services offered with those delivered by HHAs. We explore the growth in the delivery of HHA services to Medicare beneficiaries in AL compared with other home settings between 2012 and 2014. We also examine demographic, cognitive, and functional characteristics of beneficiaries; HHA provider characteristics; and the variation in the percentage of home health use in ALs across the country. Our findings suggest that there was a slight growth in the share of HHA services being delivered in AL. HHA recipients in AL were more likely to have cognitive and activities of daily living impairments than those receiving HHA services in other settings. This is among the first studies to examine HHA utilization in AL.