The Trauma Dyad: The Role of Informal Caregivers for Older Adults After Traumatic Injury.

OBJECTIVE: To investigate the association between higher injury severity and increased informal caregiving received by injured older adults. SUMMARY OF BACKGROUND DATA: Injured older adults experience high rates of functional decline and disability after hospitalization. Little is known about the scope of caregiving received post-discharge, particularly from informal caregivers such as family. METHODS: We used the National Health and Aging Trends Study 2011 to 2018 linked to Medicare claims to identify adults ≥65 with hospital admission for traumatic injury and a National Health and Aging Trends Study interview within 12 months pre- and post-trauma. Injury severity was assessed using the injury severity score (ISS, low 0-9; moderate 10-15; severe 16-75). Patients reported the types and hours of formal and informal help received and any unmet care needs. Multi variable logistic regression models examined the association between ISS and increase in informal caregiving hours after discharge. RESULTS: We identified 430 trauma patients. Most were female (67.7%), non-Hispanic White (83.4%) and half were frail. The most common mechanism of injury was fall (80.8%) and median injury severity was low (ISS = 9). Those reporting receiving help with any activity increased post-trauma (49.0% to 72.4%, P < 0.01), and unmet needs nearly doubled (22.8% to 43.0%, P < 0.01). Patients had a median of 2 caregivers and most (75.6%) were informal, often family members. Median weekly hours of care received pre- versus post-injury increased from 8 to 14 (P < 0.01). ISS did not independently predict increase in caregiving hours; pre-trauma frailty predicted an increase in hours ≥8 per week. CONCLUSIONS: Injured older adults reported high baseline care needs which increased significantly after hospital discharge and were mostly met by informal caregivers. Injury was associated with increased need for assistance and unmet needs regardless of injury severity. These results can help set expectations for caregivers and facilitate post-acute care transitions.

Patterns of Healthcare Utilization and Spending Among Homebound Older Adults in the USA: an Observational Study.

BACKGROUND: Homebound older adults have complex social, medical, and financial needs, but little is known about their healthcare utilization and spending. OBJECTIVE: To characterize healthcare utilization and spending among homebound older adults. DESIGN: Cohort study using National Health and Aging Trends Study data linked to Medicare Fee-for-Service (FFS) claims data. PARTICIPANTS: Adults aged 70 years and older with Medicare FFS coverage (n = 6468). MAIN MEASURES: In a person-year analysis, survey-weighted rates and adjusted marginal differences in inpatient, outpatient, and emergency department utilization and spending 12 months post-interview were calculated by homebound status, defined as reporting never or rarely (no more than 1 day/week) leaving home in the last month. KEY RESULTS: Compared to the non-homebound, homebound observations had lower annual unadjusted rates of accessing primary care (60.9% vs 71.9%, p < 0.001) and specialist care (61.0% vs 74.9%, p < 0.001) and higher annual rates of emergency department use (54.0% vs 32.6%, p < 0.001) and hospitalization (39.8% vs 19.8%, p < 0.001). Total annual Medicare spending was $11,346 higher among the homebound compared to the non-homebound (p < 0.001). In a single year analysis (2015), homebound older adults accounted for 11.0% of Medicare spending among those over 70 despite making up only 5.7% of this population. 13.6% of the homebound were in the 95th percentile or above of Medicare spending in 2015. In models adjusting for demographic, clinical, and geographic characteristics, homebound status was associated with a decreased likelihood of having an annual primary care or specialist visit and $2226 additional total annual Medicare spending. CONCLUSIONS: Homebound older adults use more hospital-based care and less outpatient care than the non-homebound, contributing to higher levels of overall Medicare spending.

Lifetime history of traumatic brain injury is associated with increased loneliness in adults: A US nationally representative study.

BACKGROUND/OBJECTIVES: An estimated 55 million individuals worldwide live with chronic disability associated with traumatic brain injury (TBI), which may include cognitive, behavioral, and social impairments. Reduced participation in social activities is common after TBI; however, few studies have evaluated loneliness among survivors of TBI. The current study aimed to evaluate the association between history of TBI and loneliness and to identify mediators of this association. METHODS/DESIGN: Retrospective cohort study. Nationally representative sample of N = 724 adults over age 50 years (Health and Retirement Study). Loneliness was evaluated using the 11-item Revised University of California Los Angeles (R-UCLA) Loneliness Scale (range 11-33). Lifetime history of TBI evaluated retrospectively using the Ohio State University TBI Identification Method. We included the following covariates: age, sex, race, and education; and mediators: depressive symptoms, number of comorbidities, chronic pain, difficulty with activities of daily living, and social network index. RESULTS: History of TBI was associated with a 1.28-point (95% CI, 0.46-2.11; P < .05; Cohen's D = 0.284) increase in R-UCLA Loneliness Scale scores after covariate adjustment. Individuals with more recent injuries (within 10 years) and multiple lifetime TBIs reported the highest loneliness scores. In the structural equation model, depressive symptoms partially mediated the relationship between TBI and loneliness. All models were adjusted for US population sampling weights. CONCLUSIONS: History of TBI was associated with greater loneliness compared with individuals without TBI in a representative sample of US adults. Managing depressive symptoms and medical consequences of TBI may be a target to ameliorate reporting of loneliness in this population.

Homebound Status and the Critical Role of Caregiving Support.

The homebound population relies on both paid and family caregivers to meet their complex care needs. In order to examine the association between intensity of caregiving support and leaving the home, we identified a population of community-dwelling, homebound Medicare beneficiaries age ≥65 (n = 1,852) enrolled in the 2015 National Health and Aging Trends Study and measured the support they received from paid and family caregivers. Those who had ≥20 h of caregiving support per week had 50% less odds of being "exclusively homebound" (rarely or never leave home) (OR 0.56, p < .01). Policies that facilitate increased support for family caregivers and better access to paid caregivers may allow homebound individuals who would otherwise be isolated at home to utilize existing community-based long-term care services and supports.

Medicare Expenditures and Health Care Utilization in a Multiethnic Community-based Population With Dementia From Incidence to Death.

INTRODUCTION: While individuals live with dementia for many years, utilization and expenditures from disease onset through the end-of-life period have not been examined in ethnically diverse samples. METHODS: We used a multiethnic, population-based, prospective study of cognitive aging (Washington Heights-Inwood Columbia Aging Project) linked to Medicare claims to examine total Medicare expenditures and health care utilization among individuals with clinically diagnosed incident dementia from disease onset to death. RESULTS: High-intensity treatment (hospitalizations, life-sustaining procedures) was common and mean Medicare expenditures per year after diagnosis was $69,000. Non-Hispanic blacks exhibited higher spending relative to Hispanics and non-Hispanic whites 1 year after diagnosis. Non-Hispanic blacks had higher total (mean=$205,000) Medicare expenditures from diagnosis to death compared with non-Hispanic whites (mean=$118,000). Hispanics' total expenditures and utilization after diagnosis was similar to non-Hispanic whites despite living longer with dementia. DISCUSSION: Health care spending for patients with dementia after diagnosis through the end-of-life is high and varies by ethnicity.

Long-term outcomes after rehabilitation in Medicare Advantage and fee-for-service beneficiaries.

BACKGROUND: Financial incentives in capitated Medicare Advantage (MA) plans may lead to inadequate rehabilitation. We therefore investigated if MA enrollees had worse long-term physical performance and functional outcomes after rehabilitation. METHODS: We conducted a retrospective cohort study of Medicare beneficiaries in the nationally representative National Health and Aging Trends Study. We compared MA and fee-for-service (FFS) beneficiaries reporting rehabilitation between 2014 and 2017 by change in (1) Short Physical Performance Battery (SPPB) and (2) NHATS-derived Functional Independence Measure (FIM) from the previous year, using t-tests incorporating inverse-probability weighting and complex survey design. Secondary outcomes were self-reported: (1) improved function during rehabilitation, (2) worse function since rehabilitation ended, (3) meeting rehabilitation goals, and (4) meeting insurance limits. RESULTS: Among 738 MA and 1488 FFS participants, weighted mean age was 76 years (SD 7.0), 59% were female, and 9% had probable dementia. MA beneficiaries were more likely to be Black (9% vs. 6%) or Hispanic/other race (15% vs. 10%), be on Medicaid (14% vs. 10%), have lower income (median $35,000 vs. $48,000), and receive <1 month of rehabilitation (30% vs. 23%). MA beneficiaries had a similar decline in SPPB (-0.46 [SD 1.8] vs. -0.21 [SD 2.7], p-value 0.069) and adapted FIM (-1.05 [SD 3.7] vs. -1.13 [SD 5.45], p-value 0.764) compared to FFS. MA beneficiaries were less likely to report improved function during rehabilitation (61% [95% CI 56-67] vs. 70% [95% CI 67-74], p-value 0.006). Other outcomes and analyses restricted to inpatient rehabilitation participants were non-significant. CONCLUSIONS AND RELEVANCE: MA enrollment was associated with lower likelihood of self-reported functional improvement during rehabilitation but no clinically or statistically significant differences in annual changes of physical performance or function. As MA expands, future studies must monitor implications on rehabilitation coverage and older adults' independence.

The effect of dementia on patterns of healthcare use in older adults with diabetes.

BACKGROUND: For persons with diabetes, incidence of dementia has been associated with increased hospitalization; however, little is known about healthcare use preceding and following incident dementia. We describe healthcare utilization in the 3 years pre- and post-incident dementia among older adults with diabetes. METHODS: We used the National Health and Aging Trends Study (NHATS) linked to Medicare fee-for-service claims from 2011 to 2018. We included community-dwelling adults ≥65 years who had diabetes without dementia. We matched older adults with dementia (identified with validated NHATS algorithm) at the year of incident dementia to controls using coarsened exact matching. We examined annual outpatient visits, emergency department (ED) visits, hospitalization, and post-acute skilled nursing facility (SNF) use 3 years preceding and 3 years following dementia onset. RESULTS: We included 195 older adults with diabetes with incident dementia and 1107 controls. Groups had a similar age (81.6 vs 81.7 years) and were 56.4% female. Persons with dementia were more likely to be of minority racial and ethnic groups (26.7% vs 21.3% Black, non-Hispanic, 15.3% vs 6.7% other race or Hispanic). We observed a larger decrease in outpatient visits among persons with dementia, primarily due to decreasing specialty visits (mean outpatient visits: 3 years pre-dementia/matching 6.8 (SD 2.6) dementia vs 6.4 (SD 2.6) controls, p < 0.01 to 3 years post-dementia/matching 4.6 (SD 2.3) dementia vs 5.5 (SD 2.7) controls, p < 0.01). Hospitalization, ED visits, and post-acute SNF use were higher for persons with dementia and rose in both groups (e.g., ED visits 3 years pre-dementia/matching 3.9 (SD 5.4) dementia vs 2.2 (SD 4.8) controls, p < 0.001; 3 years post-dementia/matching 4.5 (SD 4.7) dementia vs 3.5 (SD 6.1) controls, p = 0.04). CONCLUSIONS: Older adults with diabetes with incident dementia have higher rates of acute and post-acute care use, but decreasing outpatient use over time, primarily due to a decrease in specialty visits.

Clinician Perception of Likelihood of Death in the Next Year Is Associated With 1-Year Mortality and Hospice Use Among Older Adults Receiving Home Health Care.

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.

Solo but Not Alone: An Examination of Social and Help Networks among Community-Dwelling Older Adults without Close Family.

This study evaluates help sources for personal and health tasks of adults living in the community without a spouse or nearby children. Using data from the National Health and Aging Trends Study (NHATS), a nationally representative sample of Medicare beneficiaries ages 65 and over, we conducted a population-based study of 2998 community-dwelling adults who received assistance with personal, household, or medical tasks in the past month. Using ANOVA, we compared adults aging solo to those with spouses at home and/or children in the same state. Adults aging solo were significantly more likely to identify non-child/spouse family, friends, neighbors and paid aides as part of their social networks. Their sources of unpaid help included siblings (33%), friends (32%), and non-family (e.g., neighbors (23%)). Adults aging solo were more likely to use paid caregivers, despite having lower incomes than married peers. Interventions to support adults aging solo should incorporate diverse social/help networks.

Caring for aging parents in the last years of life.

BACKGROUND: Adult children provide a large portion of end-of-life caregiving for older adults and make up the majority of caregivers for adults with dementia. Yet research has been limited to the hours of care that primary caregivers provide, neglecting the other ways adult children provide caregiving support. This study aims to describe the caregiving support adult children provide to their parents at the end of life and characterize differences by race and ethnicity and dementia status. METHODS: We conducted a retrospective study using survey responses from the Health and Retirement Study between 2002 and 2018. The sample population (n = 8040) included decedents aged 65 with at least one living adult child at their time of death. Caregiving support was defined as providing financial support, providing help with basic or instrumental activities of daily living (ADLs or IADLs), or coresiding with the care recipient. Respondents were stratified by self-identified race and ethnicity as Hispanic, non-Hispanic White, or non-Hispanic Black. Respondents were further stratified by dementia and marital status. RESULTS: Black and Hispanic respondents without dementia were more likely to report receiving financial help from (28.0% and 25.9%) or coresiding with their adult children (38.9% and 49.7%) compared to White respondents (15.0% receiving financial help and 23.3% coresiding) (p < 0.05). Among respondents with dementia, 47.1% of both Black and Hispanic respondents reported coresiding with their adult children, compared to only 24.6% of White respondents (p < 0.05). Notably, married Black and Hispanic respondents reported significantly higher rates of all support types compared to married White respondents (p < 0.05). CONCLUSIONS: The majority of older adults at the end of life receive some form of care and support from their adult children, with Black and Hispanic older adults receiving particularly high rates of care and support from their adult children regardless of dementia or marital status.

Frequency and implications of coexistent manifestations of serious illness in older adults with dementia.

BACKGROUND: In older adults, serious illness comprises three manifestations: dementia, activity of daily living (ADL) impairment, and other advanced medical conditions (AMC; e.g., end-stage renal disease). Little is known about how dementia and other manifestations of serious illness co-occur. We aim to describe the prevalence of persons with dementia (PWD) who are living with additional manifestations of serious illness, and the implications on healthcare utilization, Medicare costs, caregiving hours and out-of-pocket expenses. METHODS: In this cross-sectional study, we use data from the 2016 Health and Retirement Study (HRS) linked to Medicare fee-for-service claims. We limited inclusion to adults >65 years. Dementia was determined using validated methodology that incorporates functional and cognitive test scores from HRS. We classified PWD as having dementia alone, dementia and an AMC (irrespective of ADL impairment) or dementia and ADL impairment (without an AMC). Healthcare utilization and Medicare costs were measured in claims, caregiving hours and out-of-pocket expenses were self-reported. RESULTS: Most PWD (67%) met criteria for another manifestation of serious illness (24% advanced medical condition, 44% ADL impairment). PWD and an AMC had the highest proportion of hospital use and the highest median total Medicare costs ($17,900 vs. $8962 dementia + ADL impairment vs. $4376 dementia alone). Mean total hours of caregiving per month were similar for PWD and an AMC and PWD and ADL impairment (142.9 and 141.9 h, respectively), while mean hours were much lower for PWD alone (47.7 h). Median out-of-pocket costs were highest for PWD and ADL impairment ($13,261) followed by PWD and an AMC ($10,837) and PWD alone ($7017). CONCLUSIONS: PWD commonly face another manifestation of serious illness. Dementia and ADL impairment was associated with the highest costs for PWD and families while dementia and an AMC was associated with the highest costs for Medicare.

The heterogeneity of the homebound: A latent class analysis of a national sample of homebound older adults.

BACKGROUND: Homebound status is a final common pathway for people with a variety of diseases and conditions. There are 7 million homebound older adults in the United States. Despite concerns regarding their high healthcare costs and utilization and limited access to care, the unique subsets within the homebound population are understudied. Better understanding of distinct homebound groups may enable more targeted and tailored approaches to care delivery. Therefore, in a nationally representative sample of homebound older adults we used latent class analysis (LCA) to examine distinct homebound subgroups based on clinical and sociodemographic characteristics. MATERIALS AND METHODS: Using data from the National Health and Aging Trends Study (NHATS) 2011-2019, we identified 901 newly homebound persons (defined as never/rarely leaving home or leaving home only with assistance and/or difficulty). Sociodemographic, caregiving context, health and function, and geographic covariates were derived from NHATS via self-report. LCA was used to identify the existence of distinct subgroups within the homebound population. Indices of model fit were compared for models testing 1-5 latent classes. Association between latent class membership and 1 year mortality was examined using a logistic regression. RESULTS: We identified four classes of homebound individuals differentiated by their health, function, sociodemographic characteristics, and caregiving context: (i) Resource constrained (n = 264); (ii) Multimorbid/high symptom burden (n = 216); (iii) Dementia/functionally impaired (n = 307); (iv) Older/assisted living (n = 114). One year mortality was highest among the older/assisted living subgroup (32.4%) and lowest among the resource constrained (8.2%). CONCLUSIONS: This study identifies subgroups of homebound older adults characterized by distinct sociodemographic and clinical characteristics. These findings will support policymakers, payers, and providers in targeting and tailoring care to the needs of this growing population.

The burden of pre-admission pain, depression, and caregiving on palliative care needs for seriously ill trauma patients.

INTRODUCTION: Increasing numbers of individuals admitted to hospitals for trauma are older adults, many of whom also have underlying serious illnesses. Older adults with serious illness benefit from palliative care, but the palliative care needs of seriously ill older adults with trauma have not been elucidated. We hypothesize that older adults with serious illness have a high prevalence of pain, depression, and unpaid caregiving hours before trauma admission. METHODS: Using Health and Retirement Study data (2008-2018) linked to Medicare claims, we identified patients 66 years or older who met an established definition of serious illness in surgery and were admitted with trauma. Descriptive analyses were performed for baseline patient characteristics, pre-admission pain (dichotomized as none/mild vs. moderate/severe), depression (dichotomized as no, Center for Epidemiologic Studies Depression scale [CES-D] < 3 vs. yes, CES-D ≥ 3), and unpaid caregiving hours (dichotomized as low (<30 h/month), high (≥30 h/month)). RESULTS: We identified 1741 patients, 67.4% were female and 86.8% White. Mean age was 83 (SD 7.5), and 60.3% had ≥4 comorbidities. The majority (62.9%) were admitted due to falls, 33.5% had isolated hip fracture. The prevalence of baseline moderate/severe pain and depression were 38.1% and 42.6%, respectively. Among the cohort, 42.2% had unpaid caregiving, of those 27.7% had ≥30 h/week of unpaid caregiving hours. CONCLUSIONS: Prior to trauma admission, older adults with serious illness have a high prevalence of pain, depression, and unpaid caregiving hours. These findings may inform targeted palliative care interventions to reduce symptom burden and post-discharge healthcare utilization.

Association of Social Isolation With Hospitalization and Nursing Home Entry Among Community-Dwelling Older Adults.

Importance: Social isolation is associated with adverse health outcomes, yet its implications for hospitalization and nursing home entry are not well understood. Objective: To evaluate whether higher levels of social isolation are associated with overnight hospitalization, skilled nursing facility stays, and nursing home placement among a nationally representative sample of community-dwelling older adults after adjusting for key health and social characteristics, including loneliness and depressive symptoms. Design, Setting, and Participants: This observational cohort study included 7 waves of longitudinal panel data from the Health and Retirement Study, with community-dwelling adults aged 65 years or older interviewed between March 1, 2006, and June 30, 2018 (11 517 respondents; 21 294 person-years). Data were analyzed from May 25, 2022, to May 4, 2023. Main Outcomes and Measures: Social isolation was measured with a multidomain 6-item scale (range, 0-6, in which a higher score indicates greater isolation). Multivariate logistic regressions were performed on survey-weighted data to produce national estimates for the odds of self-reported hospitalization, skilled nursing facility stays, and nursing home placement over time. Results: A total of 57% of this study's 11 517 participants were female, 43% were male, 8.4% were Black, 6.7% were Hispanic or Latino, 88.1% were White, 3.5% were other ("other" includes American Indian or Alaska Native, Asian or Pacific Islander, and other race, which has no further breakdown available because this variable was obtained directly from the Health and Retirement Study), and 58.2% were aged 65 to 74 years. Approximately 15% of community-dwelling older adults in the US experienced social isolation. Higher social isolation scores were significantly associated with increased odds of nursing home placement (odds ratio, 2.01; 95% CI, 1.21-3.32) and skilled nursing facility stays (odds ratio, 1.16; 95% CI, 1.06-1.28) during 2 years. With each point increase in an individual's social isolation score, the estimated probability of nursing home placement or a skilled nursing facility stay increased by 0.5 and 0.4 percentage points, respectively, during 2 years. Higher levels of social isolation were not associated with 2-year hospitalization rates. Conclusions and Relevance: This cohort study found that social isolation was a significant risk factor for nursing home use among older adults. Efforts to deter or delay nursing home entry should seek to enhance social contact at home or in community settings. The design and assessment of interventions that optimize the social connections of older adults have the potential to improve their health trajectories and outcomes.

Prevalence of unpaid caregiving, pain, and depression in older seriously ill patients undergoing elective surgery.

INTRODUCTION: Serious illness is a life-limiting condition negatively impacting daily function, quality of life, or excessively straining caregivers. Over 1 million older seriously ill adults undergo major surgery annually, and national guidelines recommend that palliative care be available to all seriously ill patients. However, the palliative care needs of elective surgical patients are incompletely described. Understanding baseline caregiving needs and symptom burden among seriously ill older surgical patients could inform interventions to improve outcomes. METHODS: Using Health and Retirement Study data (2008-2018) linked to Medicare claims, we identified patients ≥66 years who met an established serious illness definition from administrative data and underwent major elective surgery using Agency for Healthcare Research and Quality (AHRQ) criteria. Descriptive analyses were performed for preoperative patient characteristics, including: unpaid caregiving (no or yes); pain (none/mild or moderate/severe); and depression (no, CES-D < 3, or yes, CES-D ≥ 3). Multivariable regression was performed to examine the association between unpaid caregiving, pain, depression, and in-hospital outcomes, including hospital days (days admitted between discharge date and one-year post-discharge), in-hospital complications (no or yes), and discharge destination (home or non-home). RESULTS: Of the 1343 patients, 55.0% were female and 81.6% were non-Hispanic White. Mean age was 78.0 (SD 6.8); 86.9% had ≥2 comorbidities. Before admission, 27.3% of patients received unpaid caregiving. Pre-admission pain and depression were 42.6% and 32.8%, respectively. Baseline depression was significantly associated with non-home discharge (OR 1.6, 95% CI 1.2-2.1, p = 0.003), while baseline pain and unpaid caregiving needs were not associated with in-hospital or post-acute outcomes in multivariable analysis. CONCLUSIONS: Prior to elective surgery, older adults with serious illnesses have high unpaid caregiving needs and a prevalence of pain and depression. Baseline depression alone was associated with discharge destinations. These findings highlight opportunities for targeted palliative care interventions throughout the surgical encounter.

Symptom Management Experience of End-of-Life Family Caregivers: A Population-Based Study.

CONTEXT: In the United States, 30% of all deaths occur at home. Effective symptom management is integral to quality end-of-life (EOL) care. Family caregivers play a major role in EOL symptom management. Recent federal policies emphasize the need to improve training and support for family caregivers. OBJECTIVES: In a nationally representative sample: 1) Characterize the population of caregivers assisting with and reporting difficulty in symptom management at the end of life; and 2) Assess caregiver and care recipient characteristics associated with caregiver report of difficulty. METHODS: Cross-sectional analysis of data from the National Health and Aging Trends Study and National Study of Caregiving. Multivariable logistic regression to assess association between care recipient and caregiver characteristics and caregiver report of difficulty. RESULTS: Caregivers (n = 214) were mean age 57.1 years, 74% female, and 86% white non-Hispanic. Over 2 million family caregivers provided assistance with symptom management in the last month of life in 2017; 78% reported difficulty. Non-Hispanic Black caregivers (aOR 0.24, 95% CI 0.08-0.75), Hispanic caregivers (0.13, 0.03-0.56), and caregivers with lower than high school education (0.26, 0.11-0.63) were less likely to report difficulty. Caregivers of care recipients who received paid care (3.37, 1.30-8.69) were more likely to report difficulty. Receipt of training and support services (1.80, 0.83-3.93) and hospice (1.83, 0.82-4.07) were not associated with caregiver report of difficulty. CONCLUSION: These findings underscore the need to improve training and support for family caregivers in EOL symptom management.

Prospective assessment of dementia on transitions in homeboundness using multistate Markov models.

BACKGROUND: One in 20 older adults in the United States is homebound and rarely/never leaves home. Although being homebound decreases the quality of the lived experience of individuals with serious illnesses, little is known about the frequency or likelihood of transitions in or out of homebound status. The objective of this study was to characterize the probability of transitions to and from homebound status among older adults and examine the relationship between dementia status and homebound transitions. METHODS: Using 2011-2018 data from the National Health and Aging Trends Study (NHATS), a nationally representative longitudinal study of aging in the United States, we identified 6375 community-dwelling Medicare beneficiaries. Homebound status (independent, semi-homebound (leaving home but with difficulty or help), homebound (rarely or never leaving home), nursing home resident, dead) was assessed annually via self-report. Transition probabilities across states were assessed using a multistate Markov model. RESULTS: Less than half of homebound individuals remain homebound (probability = 41.5% [95% CI: 39.2%, 43.5%]) after 1 year. One out of four dies (24% [22.3%, 26.0%]) and there is a low probability (3.2% [2.5%, 4.1%]) of transition to a nursing home. Dementia status was associated with increased risk of progression from independence to homebound status (HR: 1.83 [1.01, 3.34]). Dementia was consistently associated with increased probabilities of transitions to death including a two-fold increased hazards of progression from homebound to death (HR: 2.18 [1.69, 2.81]). Homebound individuals with dementia have a 34.2% [25.8%, 48.1%] probability of death in 5 years, compared with 17.4% [13.7%, 24.3%] among those without dementia. DISCUSSION: Dementia is associated with greater risk of transitioning across homebound states. There is a greater need to support home-based care for patients with dementia, especially as the ongoing COVID pandemic has raised concerns about the need to invest in alternative models to nursing home care.

Cost of home hospitalization versus inpatient hospitalization inclusive of a 30-day post-acute period.

BACKGROUND: Previous studies have demonstrated that hospital at home (HaH) care is associated with lower costs than traditional hospital care. Most prior studies were small, not U.S.-focused, or did not include post-acute costs in their analyses. Our objective was to determine if combined acute and 30-day post-acute costs of care were lower for HaH patients compared to inpatient comparisons in a Center for Medicare and Medicaid Innovation Center demonstration of HaH. METHODS: A single-center New York City retrospective observational cohort study of patients admitted to either HaH or inpatient care from September 1, 2014 through August 31, 2017. Eligible patients were 18 years or older, required inpatient admission, lived in Manhattan, and met home safety requirements. Comparison individuals met the same criteria and were included if they refused HaH care or were admitted when HaH was not available. HaH care was substitutive hospital-level care and 30-days of post-acute transitional care. Main outcomes were costs of care of the acute and post-acute 30-day episodes. We matched subjects on age, sex, and insurance and conducted regression analyses using an unadjusted model and one adjusted for several patient characteristics. RESULTS: Of 523 Medicare admission episodes, data were available for 201 episodes in the HaH arm and 101 episodes of usual care. HaH patients were older (81.6 [SD = 12.3] years vs. 74.6 [SD = 14.0], p < 0.0001) and more likely to have activities of daily living (ADL) impairments (75.4% vs. 46.5%, p < 0.0001). Unadjusted mean costs were $5054 lower for HaH episodes compared to inpatient episodes. Regression analysis with matching showed HaH costs were $5116 (95% CI -$10,262 to $30, p = 0.05) lower, and when adjusted for age, sex, insurance, diagnosis, and ADL impairments, $5977 (95% CI -$10,758 to -$1196, p = 0.01) lower. CONCLUSIONS: HaH combined with 30-day post-acute transition care was less costly than inpatient care.

Content of Home-Based Dementia Care: Adverse Consequences of Unmet Toileting Needs.

Despite high-intensity caregiving support, those with dementia may experience adverse consequences because the care they receive does not match their care needs. This study evaluates the relationship between content of care (i.e., specific assistance with toileting) and adverse consequences (i.e., toileting accidents because no one was there to help) in a population of community-dwelling Medicare beneficiaries with dementia and impairment in toileting enrolled in the National Health and Aging Trends Study (NHATS). Only two thirds of individuals received specific assistance with toileting, which was associated with a reduced risk of adverse consequences related to toileting in a multivariable model adjusted for key variables including high-intensity caregiving (odds ratio [OR] = 0.36, 95% confidence interval [CI] = [0.23, 0.58]). To ensure care meets the needs of those with dementia living in the community, it is important to consider not only the quantity but also the content of care received.

Paid Caregivers in the Community-based Dementia Care Team: Do Family Caregivers Benefit?

PURPOSE: Older adults with dementia often rely on both paid caregivers (ie, home health aides, personal care attendants, other direct care workers) and family caregivers (ie, spouses, children, other unpaid individuals) to remain in the community. This study conceptualizes paid caregivers as part of the collaborative dementia care team and examines the association between receipt of paid care and primary family caregiver experience. METHODS: Using data from 3 waves (2011, 2015, and 2017) of the National Health and Aging Trends Study linked to the National Study of Caregiving, community-dwelling Medicare beneficiaries aged ≥67 years with advanced dementia (n = 338 observations) were identified. Primary family caregiver experiences were compared among those with zero, part-time (<40 hours/week), and full-time (≥40 hours/week) paid care, and multivariable models were used to evaluate the associations between full-time paid care and family caregiver strain (eg, being overwhelmed due to caregiving) and activity restriction (eg, being unable to work for pay due to caregiving). FINDINGS: About one half of the community-dwelling older adults with advanced dementia received paid care: 30% had part-time paid care and 18% had full-time paid care. The experiences of family caregivers of those receiving part-time and no paid care were not significantly different. After adjusting for family caregiver and care recipient characteristics, receipt of full-time paid care was associated with a nearly 70% reduced odds of having activity restrictions due to caregiving (odds ratio, 0.31; P = 0.01) and a reduction in mean caregiver strain score (-0.73; P = 0.04). There was no statistically significantly association between the odds of high caregiver strain (score ≥5) and receipt of paid care (odds ratio, 0.65; P = 0.33). IMPLICATIONS: The provision of paid care for individuals with dementia in the community may benefit family caregivers. Future work should acknowledge the important ways that paid caregivers contribute to outcomes for all members of the collaborative dementia care team.