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Interest in home-based care is increasing among Medicare Advantage plans, but information on the characteristics of homebound beneficiaries is limited. This study examines the prevalence, characteristics, predictors, health service use, and mortality outcomes of homebound beneficiaries of a large national plan. Visual Abstract. Epidemiology of Homebound Population Among Beneficiaries of a Large National Medicare Advantage Plan: Interest in home-based care is increasing among Medicare Advantage plans, but information on the characteristics of homebound beneficiaries is limited. This study examines the prevalence, characteristics, predictors, health service use, and mortality outcomes of homebound beneficiaries of a large national plan. Background: Interest in home-based care is increasing among Medicare Advantage (MA) plans. The epidemiology of homebound MA beneficiaries is unknown. Objective: To determine the prevalence, characteristics, predictors, health service use, and mortality outcomes of homebound beneficiaries of a large national MA plan. Design: Cross-sectional. Setting: National MA plan. Participants: Humana MA beneficiaries in 2022 (n  = 2 435 519). Measurements: Homebound status was assessed via in-home assessment using previously defined categories: homebound (never or rarely left home in the past month), semihomebound (left home with assistance, had difficulty, or needed help leaving home), and not homebound. Demographic, clinical, health service use, and mortality outcomes were compared by homebound status. Results: In 2022, the overall prevalence of homebound beneficiaries was 22.0% (8.4% of beneficiaries were homebound, and 13.6% were semihomebound). In adjusted models, female sex (odds ratio [OR], 1.36 [95% CI, 1.35 to 1.37), low-income status or dual eligibility for Medicare and Medicaid (OR, 1.56 [CI, 1.55 to 1.57]), dementia (OR, 2.36 [CI, 2.33 to 2.39]), and moderate to severe frailty (OR, 4.32 [CI, 4.19 to 4.45]) were predictive of homebound status. In multivariable logistic regression, homebound status was associated with increased odds of any emergency department visit (OR, 1.14 [ CI, 1.14 to 1.15]), any inpatient hospital admission (OR, 1.44 [CI, 1.42 to 1.46]), any skilled-nursing facility admission (OR, 2.18 [CI, 2.13 to 2.23]), and death (OR, 2.55 [CI, 2.52 to 2.58]). Limitation: The study period overlapped the tail end of the COVID-19 pandemic, and data were derived from a single national MA plan, which limits generalizability. Conclusion: Overall homebound prevalence in a national MA plan was 22.0% and was independently associated with increased health service use and mortality. Study findings can inform strategic initiatives to identify and manage care for homebound beneficiaries. Primary Funding Source: Humana, under a collaborative research agreement with Johns Hopkins University. [ABSTRACT FROM AUTHOR]

To better understand determinants and potential disparities in end of life, we model decedents' place of death with explanatory variables describing familial, social, and economic resources. A retrospective cohort of 204,041 decedents and their family members are drawn from the Utah Population Database family caregiving dataset. Using multinomial regression, we model place of death, categorized as at home, in a hospital, in another location, or unknown. The model includes family relationship variables, sex, race and ethnicity, and a socioeconomic status score, with control variables for age at death and death year. We identified the effect of a family network of multiple caregivers, with 3+ daughters decreasing odds of a hospital death by 17 percent (OR: 0.83 [0.79, 0.87], p < 0.001). Place of death also varies significantly by race and ethnicity, with most nonwhite groups more likely to die in a hospital. These determinants may contribute to disparities in end of life. [ABSTRACT FROM AUTHOR]

Background: Hospice care frequently includes hands-on care from hospice aides, but the need for hospice aide care may vary in residential settings (e.g., assisted livings and nursing homes). Objectives: The objective of this study is to compare hospice aide use and factors associated with use across residential settings. Design: This longitudinal cohort study used data from Medicare beneficiaries in the United States enrolled in the Medicare Current Beneficiary Survey (MCBS) who died between 2010 and 2019 and had hospice claims and available residential setting data in MCBS (n = 1,915). Analysis: Decedent hospice aide use was compared by residential settings; multivariable models controlling for sociodemographic, clinical/functional, and hospice characteristics examined factors associated with hospice aide care in different residential settings. Results: Hospice aide visits were least common in the community setting (64.4% vs. 76.6% vs. 72.6% with any hospice aide visits in community, assisted living, and nursing home, respectively, p = 0.001). In adjusted models, factors associated with hospice aide visits did not significantly differ by residential settings. Conclusions: Despite staff providing hands-on support in assisted livings and nursing homes, hospice aide visits were more common in residential as opposed to community settings, and factors associated with hospice aide visits were similar among settings. To maximize the potentially positive impact of hospice aides on overall care, additional work is needed to understand when hospice aides are used and how hospice aides collaborate with families and care teams. This will help to ensure that hospice care is appropriately tailored to individual care needs in all residential settings. [ABSTRACT FROM AUTHOR]

More than 17.7 million people in the U.S. care for older adults. Analyzing population datasets can increase our understanding of the needs of family caregivers of older adults. We reviewed 14 U.S. population-based datasets (2003–2023) including older adults' and caregivers' data to assess inclusion and measurement of 8 caregiving science domains, with a focus on whether measures were validated and/or unique variables were used. Challenges exist related to survey design, sampling, and measurement. Findings highlight the need for consistent data collection by researchers, state, tribal, local, and federal programs, for improved utility of population-based datasets for caregiving and aging research. [ABSTRACT FROM AUTHOR]

Background: Novel hospital diversion strategies are needed to support a growing number of patients with dementia living in the community. One promising model is community paramedicine (CP), which deploys paramedics to the home, who consult with a physician to coordinate treatment and assess disposition. While evidence suggests CP can manage many patients without escalation to the emergency department (ED), no studies have evaluated optimal CP utilization for patients with dementia. Therefore, we compare the use and outcomes of CP for homebound patients with and without dementia. Methods: This retrospective cohort study examines 251 homebound patients receiving home‐based primary care, who utilized a physician‐led CP service between March 2017 and May 2022. Linked electronic health record data included patient demographics, clinical characteristics, and CP encounter details. Dementia status and CP outcomes, including rates of ED transport, over‐transport (i.e., transported, but not hospitalized), and under‐transport (i.e., not transported, but ED visit within 3 days), were determined via chart review. Using logistic regression, we modeled the association of dementia status with over‐ and under‐transport, adjusting for age, sex, and chief complaint. Results: Fifty‐three percent of CP patients had dementia. Their most common chief complaints were dyspnea (24.3%), altered mental status (17.9%), and generalized weakness (9.8%). We found no significant difference in ED transport rates by dementia status (25.4 vs. 22.8%, p = 0.54). Dementia diagnosis was associated with lower rates of over‐transport (OR = 0.21, p = 0.03, CI [0.05, 0.85]) and comparable rates of under‐transport (OR = 0.70, p = 0.47, CI [0.27, 1.83]) in adjusted models. Conclusions: CP has effectively managed a diverse population of homebound patients with dementia cared for via home‐based primary care. Future work should examine potential cost savings and use of CP in dementia care across geographic and healthcare settings. See related article by Kim et al. in this issue. [ABSTRACT FROM AUTHOR]

Background: Given the significant exposures experienced by the World Trade Center (WTC) general responders, there is increasing interest in understanding the effect of these exposures on aging in this population. We aim to identify factors that may be associated with frailty, a clinical syndrome characterized by a decrease in one's reserve that has been linked to poor health outcomes. Methods: WTC general responders enrolled in the WTC Health Program aged 50 and older provided informed consent. Validated frailty assessments, the Frailty Phenotype (with the Johns Hopkins Frailty Assessment Calculator) along with the FRAIL scale, categorized nonfrail from prefrail/frail. Fall risk, functional status, and cognition were also assessed. WTC variables, including an identified WTC‐certified condition, were utilized. The risk of frailty was estimated using log binomial regression analysis. A 95% confidence interval (CI) was used to estimate the prevalence ratio (PR). Results: One hundred and six participants were included; 38 (35.8%) were classified as pre‐frail or frail. More of the pre‐frail/frail group were obese (57.9% vs. 25%; p = 0.004) and had a WTC‐certified condition (78.9% vs. 58.8%; p = 0.036). Obesity (PR = 2.43, 95% CI = 1.31, 4.53), a WTC‐certified condition (PR = 1.77, 95% CI = 1.09, 2.89), and risk of falling (PR = 1.97, 95% CI = 1.01, 3.84) were independently associated with frailty. Conclusions: Obesity and having a WTC‐certified condition were found to be risk factors for frailty in our pilot study. Future work may focus on further identifying risk factors for frailty in the larger WTC general responder population. [ABSTRACT FROM AUTHOR]

Background and Objectives As long-term care increasingly moves from facilities to the community, paid caregivers (e.g. home health aides, other home care workers) will play an increasingly important role in the care of people with dementia. This study explores the paid caregiver role in home-based dementia care and how that role changes over time. Research Design and Methods We conducted individual, longitudinal interviews with the paid caregiver, family caregiver, and geriatrician of 9 people with moderate-to-severe dementia in the community; the 29 total participants were interviewed on average 3 times over 6 months, for a total of 75 interviews. Interviews were recorded, transcribed, and analyzed with structured case summaries and framework analysis. Results Paid caregivers took on distinct roles in the care of each client with dementia. Despite changes in care needs over the study period, roles remained consistent. Paid caregivers, family caregivers, and geriatricians described the central role of families in driving the paid caregiver role. Paid and family caregivers collaborated in the day-to-day care of people with dementia; paid caregivers described their emotional relationships with those they cared for. Discussion and Implications Rather than simply providing functional support, paid caregivers provide nuanced care tailored to the needs and preferences of not only each person with dementia (i.e. person-centered care), but also their family caregivers (i.e. family-centered care). Deliberate cultivation of person-centered and family-centered home care may help maximize the positive impact of paid caregivers on people with dementia and their families. [ABSTRACT FROM AUTHOR]

Background: Family caregivers often play a key role in medical decision-making for patients with cancer. Adult-children account for nearly half of caregivers, but often have less experience with serious illness care and decision-making and face unique relational challenges as the patient's child. Yet little research explores the potentially distinctive decision-making, involvement in decisions, and support needs of adult-child caregivers. Methods: Analysis of survey data of U.S. cancer caregivers conducted by CancerCare® in 2021. Chi-square tests and multivariable regression models assessed whether adult-child and spousal caregivers differed on the type of medical decisions they participated in (e.g., treatment planning, medication management), who made the decision (e.g., caregiver or joint decision), and the resources that informed decisions (e.g., friends and family, education materials). Results: Adult-children (N = 892) were less likely than spouses (N = 314) to participate in treatment planning (beta = -0.41; 95%CI = -0.81,-0.01), but more likely to be involved in decisions about whether to challenge medical authority (e.g., seeking alternative treatment, second opinion) (beta = 0.50; 95%CI = 0.22,0.78). Compared to spouses, adult-children made joint decisions with patients less often (-13.2-percentage points; 95%CI = -19.64,-6.67) and acted as primary decision-maker more frequently (5.60-percentage points; 95%CI = 0.01,10.43). More adult-children than spouses sought help and information regarding decisions from the oncology team (8.42-percentage points; 95%CI = 1.98,14.87) and friends and family (7.91-percentage points; 95%CI = 1.34,14.48). Conclusions: How cancer caregivers and patients are related to each other shapes caregivers' medical decision-making. Adult-children's and spouses' probabilities of participating in and influencing decisions differed for certain types of decisions while adult-children were more likely to seek information and social support regarding decisions. These findings highlight the importance of the patient's and caregiver's relationship type in medical decision-making, suggesting that decision support programs may be more effective if they tailor programs by relationship type. [ABSTRACT FROM AUTHOR]

The article presents a study which examined changes in social isolation in older adults using nationally representative cohort data to elucidate potential differences in demographic characteristics between chronic, intermittent, and no social isolation. Topics include baseline demographic characteristics across social isolation persistence groups, factors associated with persistent social isolation, and importance of characterizing social isolation as a chronic circumstance for certain groups.

Background: Families play a critical role in end‐of‐life (EOL) care for nursing home (NH) residents with dementia. Despite the important role of family, little is known about the availability and characteristics of families of persons with dementia who die in NHs. Methods: This is a retrospective cohort study of 18,339 individuals 65 years and older with dementia who died in a Utah NH between 1998 and 2016, linked to their first‐degree family (FDF) members (n = 52,566; spouses = 11.3%; children = 58.3%; siblings = 30.3%). Descriptive statistics, chi‐square tests, and t‐tests were used to describe the study cohort and their FDF members and to compare sociodemographic and death characteristics of NH decedents with (n = 14,398; 78.5%) and without FDF (n = 3941; 21.5%). Results: Compared with NH decedents with FDF, NH decedents with dementia without FDF members were more likely to be older (mean age 86.5 vs 85.5), female (70.5% vs 59.3%), non‐White/Hispanic (9.9% vs 3.2%), divorced/separated/widowed (84.4% vs 61.1%), less educated (<12th grade; 42.2% vs 33.7%), have Medicare and Medicaid (20.8% vs 12.5%), and die in a rural/frontier NH (25.0% vs 23.4%). NH decedents who did not have FDF were also more likely to die from cancer (4.2% vs 3.9%), chronic obstructive pulmonary disease (COPD; 3.9% vs 2.5%), and dementia (40.5% vs 38.4%) and were less likely to have 2+ inpatient hospitalizations at EOL (13.9% vs 16.2%), compared with NH decedents with FDF. Conclusions: Findings highlight differences in social determinants of health (e.g., sex, race, marital status, education, insurance, rurality) between NH decedents with dementia who do and do not have FDF—factors that may influence equity in EOL care. Understanding the role of family availability and familial characteristics on EOL care outcomes for NH residents with dementia is an important next step to informing NH dementia care interventions and health policies. [ABSTRACT FROM AUTHOR]

We assessed the spatiotemporal patterns of hospitalization with comorbid cancer and dementia. Using the 2013–2018 inpatient claims data for Medicare fee-for-service (FFS) beneficiaries, we calculated hospitalization rates by dividing the total admissions from individuals with the co-presence of a major cancer (breast, prostate, lung, and colorectal) and dementia diagnoses with the total counts of FFS beneficiaries aged 65 or older. We identified 22 hotspots with high hospitalization rates that showed heterogeneous spatial and temporal utilization patterns. The odds of a county being a hotspot increased significantly with the county-level percentage of dual Medicare-Medicaid beneficiaries (aOR 1.05; 95% CI: 1.04–1.07) and the prevalence of cancer (aOR 1.73; 95% CI: 1.59–1.89), while decreased significantly with increasing degree of rurality (aOR.82; 95% CI:.79–.85) and decreased yearly over time (aOR.72; 95% CI:.68–.75). The identified hotspots and factors at the county-level may help understand healthcare utilization patterns and assess resource allocation for this unique patient group. [ABSTRACT FROM AUTHOR]

Background and Objectives Despite the importance of provider continuity across healthcare settings, continuity among home care workers who provide hands-on long-term care is understudied. This project describes home care worker continuity, identifies factors associated with increased continuity, and examines associations between continuity and client outcomes. Research Design and Methods We conducted a retrospective cohort study of clients receiving Medicaid-funded home-based long-term care (n = 3,864) using insurance plan and home care agency data from a large nonprofit organization. We estimated home care worker continuity for clients between 6-month clinical assessments using Bice–Boxerman scores. We then used generalized estimating equations to model associations between home care worker continuity and (1) client characteristics (e.g. cognitive impairment), and (2) client functional, health, and psychosocial outcomes. Results While home care worker continuity was lowest for clients receiving the most weekly care hours, a range of continuity existed across all levels of care need. Those who were male, older, Asian/Pacific Islander/Native American, cognitively impaired, and functionally impaired had lower continuity. Higher home care worker continuity was significantly associated (p <.05) with fewer falls, a higher likelihood of functional improvement/stabilization, and fewer depressive symptoms. Discussion and Implications The finding that home care worker continuity is associated with the health and well-being of home-based long-term care clients underscores the importance of building high-quality relationships in long-term care. Continued efforts are necessary to understand and advance home care worker continuity and to identify other aspects of the home care experience that benefit those receiving long-term care at home. [ABSTRACT FROM AUTHOR]

Background: Given the complex care needs of older adults receiving home health care (HHC), it is important for HHC clinicians to identify those with limited prognosis who may benefit from a transition to hospice care. Objectives: To assess the association between HHC clinician-identified likelihood of death and (1) 1-year mortality, and (2) hospice use. Methods: Prospective cohort study from the National Health and Aging Trends Study (NHATS) waves 2011–2018, linked to the Outcomes and Assessment Information Set (OASIS) HHC assessment and Medicare data among 915 community-dwelling NHATS respondents. HHC clinician—identified likelihood of death/decline was determined using OASIS item M1034. Multivariable logistic regression was used to assess the association between clinician-identified likelihood of death/decline and 1-year mortality and hospice use. Results: HHC clinicians identified 42% of the sample as at increased risk of decline or death. One year mortality was 22.3% (n = 548), and 15.88% (n = 303) used hospice within 12 months of HHC. HHC clinician-perceived likelihood of death/decline was associated with greater odds of 1-year mortality (odds ratio [OR], 6.57; confidence interval (95% CI), 2.56–16.90) and was associated with greater likelihood of hospice use (OR, 1.61; 95% CI, 1.00–2.62). Conclusion: HHC clinician perception of patients' risk of death or decline is associated with 1-year mortality. A better understanding of HHC patients at high risk for mortality can facilitate improved care planning and identification of homebound older adults who may benefit from hospice. [ABSTRACT FROM AUTHOR]

Background Medicare-funded home healthcare (HHC) delivers skilled nursing, therapy, and related services through visits to the patient's home. Nearly one-third (31%) of HHC patients have diagnosed dementia, but little is currently known regarding how HHC utilization and care delivery differ for persons living with dementia (PLwD). Methods We drew on linked 2012–2018 Health and Retirement Study and Medicare claims for a national cohort of 1 940 community-living older adults. We described differences in HHC admission, length of stay, and referral source by patient dementia status and used weighted, multivariable logistic and negative binomial models to estimate the relationship between dementia and HHC visit type and intensity while adjusting for sociodemographic characteristics, health and functional status, and geographic/community factors. Results PLwD had twice the odds of using HHC during a 2-year observation period, compared to those without dementia (odds ratio [OR]: 2.03; p <.001). They were more likely to be referred to HHC without a preceding hospitalization (49.4% vs 32.1%; p <.001) and incurred a greater number of HHC episodes (1.4 vs 1.0; p <.001) and a longer median HHC length of stay (55.8 days vs 40.0 days; p <.001). Among post-acute HHC patients, PLwD had twice the odds of receiving social work services (unadjusted odds ratio [aOR]: 2.15; p =.008) and 3 times the odds of receiving speech-language pathology services (aOR: 2.92; p =.002). Conclusions Findings highlight HHC's importance as a care setting for community-living PLwD and indicate the need to identify care delivery patterns associated with positive outcomes for PLwD and design tailored HHC clinical pathways for this patient subpopulation. [ABSTRACT FROM AUTHOR]

INTRODUCTION: There is evidence that health care utilization increases after incident dementia, particularly after dementia diagnosis and toward the end of life; however, less is known about utilization in the years before dementia identification. METHODS: In this retrospective cohort study we obtained data on n = 5547 beneficiaries from the Health and Retirement Study (HRS)‐Medicare linked sample (n = 1241 with and n = 4306 without dementia) to compare longitudinal trends in health care costs and utilization in the 6 years preceding dementia identification relative to a confounder‐balanced reference group without dementia. RESULTS: We found that persons with dementia had a greater prevalence of outpatient emergency department (ED), inpatient hospital, skilled nursing, and home health use, and total health care costs in the years preceding dementia identification compared to their similar counterparts without dementia across a comparable timespan in later life. CONCLUSIONS: This study provides evidence to suggest greater healthcare burden may exist well before clinical manifestation and identification of dementia. Highlights: Several studies have documented the tremendous healthcare‐related costs of living with dementia, particularly toward the end of life.Dementia is a progressive neurodegenerative disease, which, for some, includes a prolonged pre‐clinical phase. However, health services research to date has seldom considered the time before incident dementia.This study documents that health care utilization and costs are significantly elevated in the years before incident dementia relative to a demographically‐similar comparison group without dementia. [ABSTRACT FROM AUTHOR]

Simple Summary: Growing evidence has underscored the importance of assessing patient values, i.e., who or what matters most, in treatment decision making, yet which factors are important to family caregivers remains understudied. Using data from a 2021 national survey of U.S. cancer caregivers, we examined factors that caregivers considered important when partnering with patients during cancer treatment decision making. Caregivers ranked 15 factors on a 4-point Likert-scale from 'very unimportant' to 'very important'. The top 5 most frequently endorsed factors were patient quality of life, physical well-being, length of life, emotional well-being, and the opinions/feelings of oncology team. The endorsement of different factors as 'very important', particularly towards 'opinions/feelings of the oncology team' varied based on caregiver age, race, gender, and ethnicity. Future work is needed to determine how to best elicit and incorporate caregiver values and preferences into patient treatment decision making. Prioritizing patient values—who/what matters most—is central to palliative care and critical to treatment decision making. Yet which factors are most important to family caregivers in these decisions remains understudied. Using data from a U.S. national survey of cancer caregivers (N = 1661), we examined differences in factors considered very important by caregivers when partnering with patients in cancer treatment decision making by cancer stage and caregiver sociodemographics. Fifteen factors were rated on a 4-point Likert-scale from 'very unimportant' to 'very important.' Descriptive statistics were used to characterize caregiver factors and tabulate proportions of importance for each. Generalized linear mixed effect modeling was used to examine the importance of factors by cancer stage, and chi-square analyses were performed to determine associations between caregiver sociodemographics and the five most commonly endorsed factors: quality of life (69%), physical well-being (68%), length of life (66%), emotional well-being (63%), and opinions/feelings of oncology team (59%). Significant associations (all p's < 0.05) of small magnitude were found between the most endorsed factors and caregiver age, race, gender, and ethnicity, most especially 'opinions/feelings of the oncology team'. Future work is needed to determine the best timing and approach for eliciting and effectively incorporating caregiver values and preferences into shared treatment decision making. [ABSTRACT FROM AUTHOR]

Background: We aimed to describe the roles and challenges of family caregivers involved in patients' cancer treatment decision‐making. Methods: Family caregiver‐reported data were analyzed from a national survey conducted in the United States by CancerCare® (2/2021–7/2021). Four select‐all‐that‐apply caregiver roles were explored: (1) observer (patient as primary decision‐maker); (2) primary decision‐maker; (3) shared decision‐maker with patient and (4) decision delegated to healthcare team. Roles were compared across five treatment decisions: where to get treatment, the treatment plan, second opinions, beginning treatment and stopping treatment. Ten challenges faced by caregivers (e.g., information, cost, treatment understanding) were then examined. χ2 and regression analyses were used to assess associations between roles, decision areas, challenges and caregiver sociodemographics. Results: Of 2703 caregiver respondents, 87.6% reported involvement in patient decisions about cancer treatment, including 1661 who responded to a subsection further detailing their roles and challenges with specific treatment decisions. Amongst these 1661 caregivers, 22.2% reported an observing role, 21.3% a primary decision‐making role, 53.9% a shared decision‐making role and 18.1% a role delegating decisions to the healthcare team. Most caregivers (60.4%) faced ≥1 challenge, the most frequent being not knowing how treatments would affect the patient's physical condition (24.8%) and quality of life (23.2%). In multivariable models, being Hispanic/Latino/a was the strongest predictor of facing at least one challenge (b = −0.581, Wald = 10.69, p <.01). Conclusions: Most caregivers were involved in patients' cancer treatment decisions. The major challenge was not understanding how treatments would impact patients' physical health and quality of life. Challenges may be more commonly faced by Hispanic/Latino/a caregivers. Patient or Public Contribution: The CancerCare® survey was developed in partnership with caregiving services and research experts to describe the role of cancer family caregivers in patient decision‐making and assess their needs for support. All survey items were reviewed by a CancerCare advisory board that included five professional patient advocates and piloted by a CancerCare social worker and other staff who provide counselling to cancer caregivers. [ABSTRACT FROM AUTHOR]