Faculty Bibliography

BACKGROUND:Older adults who are homebound, defined as those who rarely or never leave home without assistance or difficulty, experience high levels of multimorbidity, functional impairment, and mortality. Yet their needs remain poorly served by current care delivery models. While research on homebound older adults implies that these individuals are universally frail, this assumption has never been tested empirically. We aimed to better characterize the non-frail homebound older adult population. METHODS:Using nationally representative data from the National Health and Aging Trends study (NHATS), years 2011-2019 and 2021-2023, we identified the persistently homebound population (n = 3851 unique older adults). Frailty status was determined using the Fried physical frailty phenotype. We identified socio-demographic, health-related, functional and environmental characteristics associated with the absence of frailty among the homebound using multivariable logistic regression. RESULTS:Among the homebound, 8.1% were non-frail, 47.9% were pre-frail, and 44.0% were frail. Characteristics associated with not being frail included being female (70% non-frail), married (47%), and Hispanic (15%). Non-frail homebound older adults had fewer mental health symptoms (12.4% depression, 8.3% anxiety non-frail; vs. 40.2% and 33.0% frail), were less likely to be socially isolated (25.3% non-frail vs. 37.7% frail), and more likely to be functionally independent (72.1% non-frail vs. 36.7% frail). Robust homebound older adults self-reported better health (79.0% non-frail vs. 34.6% frail), fewer hospitalizations (22.0% non-frail vs. 51.4% frail), and had lower mortality rates (6.4% non-frail vs. 20.5% frail) compared to frail/pre-frail older adults. CONCLUSION/CONCLUSIONS:While the vast majority of the homebound population is frail or pre-frail, a considerable portion are not frail. Efforts to manage high-need, high-cost populations such as homebound older adults must account for the heterogeneity of the population with efforts to better understand the non-frail subpopulation and target interventions tailored to their needs with the goal of potentially reversing their homebound status.

OBJECTIVES/OBJECTIVE:Medicare-funded home health (HH) provides short-term nursing, physical therapy, and other services to over 3.5 million older adults each year. Currently, half of HH episodes are "community-entry," meaning the patient was referred without an immediately preceding hospitalization. The 2020 implementation of a new payment system-the Patient-Driven Groupings Model (PDGM)-reduced traditional Medicare reimbursement for community-entry HH (CEHH). We investigated shifts in CEHH care delivery following PDGM implementation. DESIGN/METHODS:Cross-sectional study of national 2019 and 2021 linked HH claims, assessment, HH agency, and geographic data. SETTING AND PARTICIPANTS/METHODS:Traditional Medicare beneficiaries receiving a CEHH episode in 2019 or 2021 (n = 577,602). METHODS:HH is provided through clinician visits to the patient's home; therefore, visits are the primary unit of care delivery. We modeled the number of visits overall and by service type (eg, nursing, physical therapy) using national data for CEHH patients pre-PDGM (ie, 2019) and post-PDGM (ie, 2021). Models adjust for relevant patient, HH agency, and geographic characteristics (including monthly county-level COVID-19 infection rates). RESULTS:Following PDGM, there was an 18% decrease in total visits received, with the largest decreases in the number of physical therapy (-13%), occupational therapy (-17%), and aide (-16%) visits. Reductions in visits were greatest at HH agencies with lower Medicare Advantage penetration (and thus, greater exposure to PDGM) and for-profit agencies. CONCLUSIONS AND IMPLICATIONS/CONCLUSIONS:Findings raise questions about HH agencies' ongoing ability to meet the needs of patients with complex, overlapping clinical and social needs following PDGM implementation. Ongoing monitoring of how these care delivery changes impact outcomes for CEHH patients is essential to ensure that HH can continue to help high-need older adults safely age in place.

INTRODUCTION/UNASSIGNED:Medicaid spent over 129 billion dollars on home- and community-based services (HCBS) in 2022. However, complex financing structures obscure which services are used, who uses them, and how use varies across states. METHODS/UNASSIGNED:Using 100% of national Medicaid claims data from 2021, we characterize HCBS use among dual-eligible adults aged 65 and older, distinguishing between direct care services (services that provide hands-on assistance with functional needs) and non-direct care services (eg, transportation and case management), which are often grouped together in the literature. RESULTS/UNASSIGNED:We find that 38% of older duals used any Medicaid-funded HCBS in 2021, and 26% used direct care, with direct care users being older, sicker, and more likely to have dementia than non-users. We also find that the share of older duals using direct care varies more than 4-fold between the lowest and highest utilization states, with states that finance personal care as a State Plan benefit, rather than exclusively through waiver programs, generally having greater utilization. CONCLUSION/UNASSIGNED:In light of potential funding cuts, our findings highlight the large but uneven role that Medicaid plays in financing direct care for a vulnerable population of older adults, which can be critical for them to remain in their homes and communities.

The Latino population is at an increased risk of developing dementia. Nurses have been identified as a main source of dementia care support for dementia caregivers. Latino dementia caregivers may have unique challenges due to factors including language barriers and cultural values and expectations. A rapid review was conducted to synthesize the qualitative literature on the experiences of Latino family caregivers of persons living with dementia to support nursing integration of palliative care for Latino family caregivers of persons living with dementia. Fifteen articles were included in this rapid review. Five emergent themes were identified from the included articles: (1) Culture and Caregiving Values; (2) Caregiving Challenges; (3) Health Care System Navigation; (4) Managing Dementia Care Without Formal Supports; and (5) Understanding of Dementia. Latino family caregivers often cited cultural values (eg, familismo) as central to their caregiving identities and balanced their own life and that of their loved one with limited support. This rapid review provides implications for practice, policy, and research that can better support the palliative care needs of Latino family caregivers of persons living with dementia and their caregivers.

BACKGROUND:People living with dementia frequently use Medicare skilled home health care and have unique usage patterns as compared to people without dementia, but little is known about variation in measured quality of home health care received by this population. METHODS:Using 2021 Medicare Fee-for-Service Claims data, we examined receipt of high-quality home health (i.e., care from an agency with a star rating > 3.5) as determined by two publicly available measures: the Quality of Patient Care Star Rating (based on standardized clinical status measures) and the Patient Survey Star Rating (based on satisfaction with care reported by patients or caregivers). For each quality measure, we mapped the county-level high-quality-home health agency utilization rate among people living with dementia and compared differences in utilization of high-quality home health agencies by dementia status. RESULTS:We found significant county-level variability in utilization of high-quality home health. When quality was operationalized based on clinical status measures (i.e., Quality of Patient Care Star Rating), dementia patients did not receive care from lower quality agencies. However, when quality was operationalized based on satisfaction with care (i.e., Patient Survey Star Ratings), people living with dementia were less likely than those without dementia to receive care from high-quality home health agencies. CONCLUSIONS:These findings highlight variability in receipt of high-quality home health care among people living with dementia nationally and suggest a need for further investigation as to what constitutes high-quality home health care in this population. To ensure home health meets the unique care needs of people living with dementia, policy makers should work to ensure quality measures are better aligned with the needs of people living with dementia, incentivize access to high-quality home health care where services are limited, and promote systems to improve family caregiver identification and engagement with home health care.

BACKGROUND/UNASSIGNED:To examine the relationships between state Medicaid total Long-Term Services and Supports (LTSS) expenditures and the LTSS rebalancing ratio (i.e., the proportion allocated to Home- and Community-Based Services [HCBS]) with the self-reported health of spousal caregivers of community-dwelling older adults with dementia. METHODS/UNASSIGNED:This study used multiple data sources, including the Health and Retirement Study (HRS) and annual Medicaid LTSS user and expenditure reports. The analytic sample included 1,232 respondent-waves of spousal caregivers who participated in at least one of the seven HRS waves between 2008 and 2020 and provided care for their community-dwelling spouse with dementia. We employed generalized linear models (GLMs) for both bivariate and multivariable analyses, with the outcome of interest being a dichotomous variable for self-reported poor health. RESULTS/UNASSIGNED:Each additional $1,000 of annual LTSS spending per older adult was associated with a marginally significant 4.2-percentage point reduction in the probability of reporting poor health (Average Marginal Effect [AME] in percentage points [PP] = -4.21, 95 % Confidence Interval [CI] = -9.12-0.70, p = 0.093). However, no statistically significant association was observed between the LTSS rebalancing ratio and spousal caregivers' self-reported health (AME in PP = 2.22, 95 % CI = -2.07-6.49, p = 0.310). CONCLUSIONS/UNASSIGNED:Higher state Medicaid LTSS spending per older adult was moderately associated with better self-reported health among spousal caregivers of individuals with dementia. As the demand for informal caregiving continues to rise, this study underscores the importance of state investments in protecting caregivers' health and highlights the need to incorporate caregiver-focused assessments into the design and evaluation of LTSS policies.

OBJECTIVES/OBJECTIVE:New York has seen increasing utilization of consumer-directed care, whereby recipients of Medicaid-funded personal care hire, train, and supervise their own caregivers. This study evaluates how switching from agency-based to consumer-directed care impacts health, functional, and social outcomes among care recipients. DESIGN/METHODS:Retrospective cohort study. SETTING AND PARTICIPANTS/METHODS:Enrollees in a large health plan in the New York Metropolitan area who received Medicaid-funded personal care. METHODS:Linked 2017-2022 administrative and clinical assessment data were examined for 10,479 health plan enrollees initially receiving agency-based care, of whom 844 (8%) switched to consumer direction during the observation period. Propensity score matching and doubly robust multivariable regression models were used to examine the impact of switching on 5 outcomes: all-cause hospitalization, falls, any decline in social activities, emergency department visits, and functional decline (impairment in activities of daily living). RESULTS:After matching, groups were well-balanced on baseline covariates. Switching to consumer direction was associated with significantly lower odds of hospitalization (OR, 0.45; P < .001), a lower odds of falls (OR, 0.69; P =.032), and a lower odds of decline in social activities (OR, 0.61; P =.006). Switching was also associated with less functional decline (β, -0.09; P < .001). CONCLUSIONS AND IMPLICATIONS/CONCLUSIONS:For those who chose to do so, switching to consumer-directed care was associated with a range of positive outcomes. Reconfiguring older adults' care convoys to include trusted, consistent caregivers may enhance health monitoring and social well-being. Policies that create administrative barriers to choosing consumer-directed care models should be evaluated for their potential to produce unintended health consequences.

IMPORTANCE/UNASSIGNED:As older adults live longer in the community, many, particularly those with dementia, may become bedbound at the end of life and require extensive support from caregivers. OBJECTIVE/UNASSIGNED:To estimate the prevalence and associated characteristics of bedbound status during the last year of life among community-dwelling decedents, and to examine differences by dementia status. DESIGN, SETTING, AND PARTICIPANTS/UNASSIGNED:This cross-sectional study used data from rounds 1 through 13 from the National Health and Aging Trends Study to identify individuals aged 65 years or older who were community-dwelling 12 months before death between the years 2011 and 2023. Data were analyzed between December 2024 and August 2025. MAIN OUTCOMES AND MEASURES/UNASSIGNED:The primary outcome was bedbound status, defined by self or proxy report incorporating frequency, help required, and level of difficulty leaving bed and/or bedroom. Probable dementia was defined using an algorithm that includes cognitive testing and diagnosis history. The number of months between each participant's date of death and their last interview prior to death was calculated. Bedbound prevalence was estimated by dementia status in monthly intervals up to 1 year before death, along with the amount of caregiver help received. Survey-weighted multivariable regression was used to estimate the likelihood of being bedbound during the last year of life by sociodemographic, clinical, and health characteristics. RESULTS/UNASSIGNED:Among 3168 decedents (mean [SD] age, 83.0 [0.2] years, 51.9% female; 36.1% [95% CI, 34.7%-39.0%] with dementia), 16.6% (95% CI, 15.0%-18.3%) were bedbound during their last year of life, representing nearly 2.6 million decedents. As individuals with dementia neared death, bedbound prevalence increased from 28.6% (95% CI, 13.9%-47.4%) in the 12 months prior to death to 77% (95% CI, 56.4%-91.6%) in the last month of life. Probable dementia was associated with nearly 5 times greater odds of being bedbound in the last year of life compared with having possible or no dementia (odds ratio, 4.58; 95% CI, 3.09-6.79; P < .001). Bedbound decedents received nearly 3 times as many hours of care per week compared with individuals who were not bedbound (98.00 [95% CI, 88.86-107.14] vs 34.03 [95% CI, 31.74-36.32] h/wk; P < .001). CONCLUSIONS AND RELEVANCE/UNASSIGNED:In this cross-sectional study of decedents, being bedbound during the last year of life was common among individuals with dementia living in the community and imposed substantial demand on caregivers. These findings underscore the urgent need for policies that ensure access to comprehensive home-based care and services to support patients and families.

BACKGROUND:The prevalence of dementia among Latinos in the United States is growing. We explored the experiences of Latino family caregivers of Latino persons living with moderate to advanced dementia (PLWD), drawing on their extensive experience as caregivers navigating the healthcare system to identify opportunities to improve dementia care. PARTICIPANTS AND SETTING/METHODS:Nineteen Latino caregivers of PLWD who spoke English or Spanish were recruited from outpatient geriatrics clinics and a home-based primary care program in New York City. METHODS:We conducted one-on-one semi-structured interviews with family caregivers of PLWD. Interviews were conducted via phone, in-person, or virtual. Interviews were audio recorded, professionally transcribed, translated (if needed), and analyzed using thematic analysis. RESULTS:We identified two main themes (each with subthemes) that influence Latino dementia caregiver experiences with healthcare: (1) caregiving and understanding of dementia shaped by individual, family, and social factors (subthemes: Caregiver's own understanding of dementia; Lack of support and understanding from family; Latino cultural perspectives on dementia); and (2) navigating formal services amid gaps in cultural alignment and support (subthemes: Trial and error: education and resource gaps; Cultural tension with healthcare). CONCLUSIONS:Culture and family dynamics shape Latino family caregivers' understanding of dementia. Although some had positive experiences, most faced challenges navigating healthcare and experienced gaps in culturally concordant information and support. A culturally centered approach is needed to address these challenges and gaps for the Latino dementia community, including culturally relevant education, resources, and support from the healthcare system and community.