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Background: Social isolation is a well-known risk factor for poor health outcomes, including incident dementia, yet its associations with outcomes among persons living with dementia are understudied. We examined the association between social isolation and hospitalization among a nationally representative sample of older adults with and without dementia., Methods: This observational cohort study included 5 533 community-dwelling Medicare beneficiaries from the 2015 and 2016 National Health and Aging Trends Study (NHATS). Using multivariable logistic regression analyses, we examined associations between social isolation and hospitalization in the following year, examining differences by dementia status. Social isolation was measured using a 4-item typology. Dementia was identified using a prespecified classification in NHATS., Results: 20.7% of older adults were socially isolated. Social isolation was more prevalent among persons with dementia (35.4%) than among those without dementia (19.0%) (p < .001). Among persons with dementia, social isolation was associated with 1.68 greater odds of hospitalization (confidence interval [CI]: 1.23-2.28), translating into a 9% average increase in the predicted probability of hospitalization for persons with dementia who were socially isolated compared to those who were not (p = .001). In the combined sample that included persons with and without dementia, there was a significant moderation effect of dementia on the association between social isolation and hospitalization (odds ratio: 1.70; CI: 1.19-2.43)., Conclusions: For persons with dementia, social isolation is prevalent and associated with greater odds of subsequent hospitalization. Efforts to reduce acute healthcare utilization should explore ways to bolster social connection to improve health outcomes among persons with dementia., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Importance: The widowhood effect, in which mortality increases and function decreases in the period following spousal death, may be heightened in older adults with functional impairment and serious illnesses, such as cancer, dementia, or organ failure, who are highly reliant on others, particularly spouses, for support. Yet there are limited data on widowhood among people with these conditions., Objective: To determine the association of widowhood with function and mortality among older adults with dementia, cancer, or organ failure., Design, Setting, and Participants: This longitudinal cohort study used population-based, nationally representative data from the Health and Retirement Study database linked to Medicare claims from 2008 to 2018. Participants were married or partnered community-dwelling adults aged 65 years and older with and without cancer, organ failure, or dementia and functional impairment (function score <9 of 11 points), matched on widowhood event and with follow-up until death or disenrollment. Analyses were conducted from September 2021 to May 2024., Exposure: Widowhood., Main Outcomes and Measures: Function score (range 0-11 points; 1 point for independence with each activity of daily living [ADL] or instrumental activity of daily living [IADL]; higher score indicates better function) and 1-year mortality., Results: Among 13 824 participants (mean [SD] age, 70.1 [5.5] years; 6416 [46.4%] female; mean [SD] baseline function score, 10.2 [1.6] points; 1-year mortality: 0.4%) included, 5732 experienced widowhood. There were 319 matched pairs of people with dementia, 1738 matched pairs without dementia, 95 matched pairs with cancer, 2637 matched pairs without cancer, 85 matched pairs with organ failure, and 2705 matched pairs without organ failure. Compared with participants without these illnesses, widowhood was associated with a decline in function immediately following widowhood for people with cancer (change, -1.17 [95% CI, -2.10 to -0.23] points) or dementia (change, -1.00 [95% CI, -1.52 to -0.48] points) but not organ failure (change, -0.84 [95% CI, -1.69 to 0.00] points). Widowhood was also associated with increased 1-year mortality among people with cancer (hazard ratio [HR], 1.08 [95% CI, 1.04 to 1.13]) or dementia (HR, 1.14 [95% CI, 1.02 to 1.27]) but not organ failure (HR, 1.02 [95% CI, 0.98 to 1.06])., Conclusions and Relevance: This cohort study found that widowhood was associated with increased functional decline and increased mortality in older adults with functional impairment and dementia or cancer. These findings suggest that persons with these conditions with high caregiver burden may experience a greater widowhood effect.

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., (© 2024 The American Geriatrics Society.)

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., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

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., (© 2024 The American Geriatrics Society.)

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., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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., (© The Author(s) 2023. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

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., (© 2023 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)

Importance: Home-delivered meals promote food security and independence among homebound older adults. However, it is unclear which of the 2 predominant modes of meal delivery, daily-delivered vs mailed (or drop-shipped) frozen meals, promotes community living for homebound older adults with dementia., Objective: To assess the risk of nursing home admission within 6 months between homebound individuals receiving daily-delivered vs drop-shipped frozen meals., Design, Setting, and Participants: This pilot, multisite, 2-arm, pragmatic clinical trial included older adults with self-reported dementia on waiting lists for meals at 3 Meals on Wheels (MOW) programs in Texas and Florida between April 7 and October 8, 2021, to assess time to nursing home placement., Interventions: Participants were randomized to receive either meals delivered by an MOW driver or frozen meals that were mailed to participants' homes every 2 weeks. Participants received their assigned intervention for up to 6 months., Main Outcomes and Measures: The primary study outcome was days from randomization to a Minimum Data Set nursing home admission assessment within 6 months. Feasibility of conducting this type of study was examined by tracking enrollment, examining baseline characteristics, monitoring participants' intervention fidelity, measuring the proportion of participants linked with Centers for Medicare & Medicaid Services (CMS) data, and analyzing the primary study outcome., Results: Among 325 eligible participants who were randomized, 243 enrolled in the study (mean [SD] age, 81 [8.0] years; 152 (62.6%) were female): 128 to the daily-delivered meals group and 115 to the drop-shipped frozen meals group; 119 participants (49.0%) lived alone. Among the total participants enrolled, 227 (93.4%) were linked deterministically to their CMS data; probabilistic methods were used to link the remaining 16 participants (6.6%). At 6 months from randomization, 160 participants (65.8%) were still receiving meals, and 25 (10.1%; 95% CI, 6.3%-14.0%) were admitted to a nursing home. After adjusting for sex, race and ethnicity, age, program, and living arrangement and the use of death as a censoring event, the adjusted log hazard ratio of nursing home placement between daily-delivered and drop-shipped frozen meals was -0.67 (95% CI, -1.52 to 0.19)., Conclusions and Relevance: This pilot randomized clinical trial demonstrated the feasibility of enrolling participants with self-reported dementia on waiting lists at MOW programs, linking their data, and evaluating outcomes. While this pilot study was not powered to detect meaningful, statistically significant differences in nursing home placement, its feasibility and initial results warrant exploration in a follow-on, adequately powered trial., Trial Registration: ClinicalTrials.gov Identifier: NCT04850781.

Background: Paid caregivers (e.g., home health aides) care for individuals living at home with functional impairment and serious illnesses (health conditions with high risk of mortality that impact function and quality of life)., Objective: To characterize those who receive paid care and identify factors associated with receipt of paid care in the context of serious illness and socioeconomic status., Design: Retrospective cohort study., Participants: Community-dwelling participants ≥ 65 years enrolled in the Health and Retirement Study (HRS) between 1998 and 2018 with new-onset functional impairment (e.g., bathing, dressing) and linked fee-for-service Medicare claims (n = 2521)., Main Measures: Dementia was identified using HRS responses and non-dementia serious illness (e.g., advanced cancer, end-stage renal disease) was identified using Medicare claims. Paid care support was identified using HRS survey report of paid help with functional tasks., Key Results: While about 27% of the sample received paid care, those with both dementia and non-dementia serious illnesses in addition to functional impairment received the most paid care (41.7% received ≥ 40 h of paid care per week). In multivariable models, those with Medicaid were more likely to receive any paid care (p < 0.001), but those in the highest income quartile received more hours of paid care (p = 0.05) when paid care was present. Those with non-dementia serious illness were more likely to receive any paid care (p < 0.001), but those with dementia received more hours of care (p < 0.001) when paid care was present., Conclusions: Paid caregivers play a significant role in meeting the care needs of those with functional impairment and serious illness and high paid care hours are common among those with dementia in particular. Future work should explore how paid caregivers can collaborate with families and healthcare teams to improve the health and well-being of the seriously ill throughout the income spectrum., (© 2023. The Author(s), under exclusive licence to Society of General Internal Medicine.)

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., (© 2023 The American Geriatrics Society.)

Paid caregivers (e.g., home health aides, home care workers) provide essential care to people with dementia living at home; this study explored family caregiver perspectives on the role and impact of paid caregivers in home-based dementia care. We conducted semi-structured interviews with family caregivers ( n = 15) of people with advanced dementia who received long-term paid care at home in New York between October 2020 and December 2020. We found that given the vulnerability resulting from advanced dementia, family caregivers prioritized finding the "right" paid caregivers and valued continuity in the individual providing care. The stable paid care that resulted improved outcomes for both the person with advanced dementia (e.g., eating better) and their family (e.g., ability to work). Those advocating for high quality, person-centered dementia care should partner with policymakers and home care agencies to promote the stability of well-matched paid caregivers for people with advanced dementia living at home.

Introduction: Seriously ill people with dementia living at home may be particularly vulnerable to disruptions in their care during times of crisis. The study sought to describe care experiences of those receiving home-based primary care in New York City during the COVID-19 pandemic and compare the experiences of people with and without dementia., Methods: We conducted a retrospective review of all electronic medical record notes between March 1, 2020 and December 30, 2020 among a sample of home-based primary care recipients (n = 228), including all deaths that occurred in the spring of 2020. Drawing from administrative records and using an abstraction tool that included both structured (e.g., documented COVID-19 exposure) and unstructured (e.g., text passage describing caregiver burden) data, we identified salient COVID-19 related care experiences and identified and categorized major disruptions in care., Results: Both people with and without dementia experienced significant disruptions of paid caregiving, family caregiving, and home-based services during the COVID-19 pandemic. While the paid caregivers of people with dementia reported more burden to the home-based primary care team as compared to people without dementia, we found little evidence of differences in quantity or type of COVID-19 related disruptions relative to dementia status., Discussion: While those with dementia have distinct care needs, our findings emphasize the way that dementia may be one piece of a larger clinical picture of serious illness. In order to support all patients with high care needs in crisis, we need to understand the interdependence of clinical care, long-term care, and family caregiving support for older adults and view dementia within the larger context of serious illness and care need., (© 2022 The American Geriatrics Society.)

Objectives: Homebound persons living with dementia may have increased difficulty accessing needed care in the community. This study identifies factors associated with becoming homebound among a national sample of Medicare beneficiaries with newly identified dementia., Design: Prospective cohort analysis., Setting and Participants: We used the National Health and Aging Trends Study (NHATS) 2011-2018 to identify community-dwelling older adults at the time of a new dementia diagnosis (n = 939). Dementia status was determined based on cognitive testing and self and proxy reporting., Methods: We compared characteristics of homebound (ie, those who never or rarely left home) and non-homebound participants at the time of dementia identification. Among non-homebound participants, we used a Fine-Gray subdistribution hazard model to identify factors associated with becoming homebound over follow-up (median follow-up 4 years), accounting for competing risks of death and moving to a nursing home., Results: 20% of individuals with newly identified dementia were homebound and this group was more functionally impaired, medically complex, and socioeconomically disadvantaged as compared to the non-homebound. Over time, depression [subhazard ratio (SHR) 2.19, 95% CI 1.36, 3.54], living in an assisted living facility (SHR 2.60, 95% CI 1.35, 4.97), and Hispanic ethnicity (SHR 1.91, 95% CI 1.05, 3.47) were associated with becoming homebound., Conclusions and Implications: Most adults are not homebound at the time of dementia diagnosis. Identifying and addressing modifiable factors like depression may slow progression to homebound status and enable persons living with dementia to access needed care in the community. In order to accommodate diverse individual and family preferences for long-term care, robust systems of home-based clinical and long-term care are necessary for those who do become homebound., (Copyright © 2022 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Home-delivered meals promote food security, socialization, and independence among homebound older adults. However, it is unclear which of the two predominant modes of meal delivery, daily-delivered vs. drop-shipped, frozen meals, promotes community living for homebound older adults with dementia. Our objective is to present the protocol for a pilot multisite, two-arm, pragmatic feasibility trial comparing the effect of two modes of meal delivery on nursing home placement among people with dementia. We include justifications for individual randomization with different consent processes and waivers for specific elements of the trial., Methods: 236 individuals with dementia on waiting lists at three Meals on Wheels programs' in Florida and Texas will be randomized to receive either: 1) meals delivered multiple times per week by a Meals on Wheels volunteer or paid driver who may socialize with and provide an informal wellness check or 2) frozen meals that are mailed to participants' homes every two weeks. We will evaluate and refine processes for recruitment and randomization; assess adherence to the intervention; identify common themes in participant experience; and test processes for linking participant data with Medicare records and nursing home assessment data. We will conduct exploratory analyses examining time to nursing home placement, the primary outcome for the larger trial., Conclusion: This pilot will inform the follow-on large-scale, definitive pragmatic trial. In addition, the justifications for individual randomization with differing consent procedures for elements of a pragmatic trial provide a model for future trialists looking to develop ethical and feasible pragmatic studies enrolling people with dementia., (Copyright © 2022. Published by Elsevier Inc.)

Competing Interests: Declaration of competing interest The authors have declared no conflicts of interest.

Objectives: Paid caregivers (e.g., home health aides) often work with family caregivers to support persons living with dementia at home. We identify (a) unique trajectories of paid and family caregiving support among persons living with dementia with high care needs and (b) factors associated with these trajectories., Methods: We used group-based multiple trajectory modeling to identify distinct trajectories of paid and family caregiving hours among National Health and Aging Trends Study respondents with dementia who died or moved to a nursing home (n = 334, mean follow-up 5.5 years). We examined differences between trajectory groups and identified factors associated with group membership using generalized estimating equation modeling., Results: A 3-group model best fit our data: (a) "low/stable care" (61.3% of respondents) with stable, low/no paid care and moderate family care, (b) "increasing paid care" with increasing, moderate paid and family care, and (c) "high family care" with increasing, high family care and stable, low paid care. While both the "increasing paid care" and "high family care" groups were more functionally impaired than the "low/stable care" group, the "high family care" group was also more likely to be non-White and experience multiple medical comorbidities, depression, and social isolation., Discussion: Study findings highlight the importance of considering unique arrangements in dementia care. Receipt of paid care was not only determined by patient care needs. Creating equitable access to paid care may be a particularly important way to support both persons living with dementia and their family caregivers as care needs grow., (© The Author(s) 2022. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: Potentially disruptive medical, surgical, and social events-such as pneumonia, hip fracture, and widowhood-may accelerate the trajectory of decline and impact caregiving needs in older adults, especially among people with dementia (PWD). Prior research has focused primarily on nursing home residents with dementia. We sought to assess the incidence of potentially disruptive events in community-dwelling people with and without dementia., Methods: Retrospective cohort study of participants aged 65+ enrolled in the Health and Retirement Study between 2010 and 2018 (n = 9346), including a subset who were married-partnered at baseline (n = 5105). Dementia was defined with a previously validated algorithm. We calculated age-adjusted and gender-stratified incidence per 1000 person-years and incidence rate ratios of: 1) hospitalization for pneumonia, 2) hip fracture, and 3) widowhood in people with and without dementia., Results: PWD (n = 596) were older (mean age 84 vs. 75) and a higher proportion were female (67% vs. 57%) than people without dementia (PWoD) (n = 8750). Age-adjusted incidence rates (per 1000 person-years) of pneumonia were higher in PWD (113.1; 95% CI 94.3, 131.9) compared to PWoD (62.1; 95% CI 54.7, 69.5), as were hip fractures (12.3; 95% CI 9.1, 15.6 for PWD compared to 8.1; 95% CI 6.9, 9.2 in PWoD). Point estimates of widowhood incidence were slightly higher for PWD (25.3; 95% CI 20.1, 30.5) compared to PWoD (21.9; 95% CI 20.3, 23.5), but differences were not statistically significant. The association of dementia with hip fracture-but not pneumonia or widowhood-was modified by gender (male incidence rate ratio [IRR] 2.24, 95% CI 1.34, 3.75 versus female IRR 1.31 95% CI 0.92,1.86); interaction term p = 0.02)., Conclusions: Compared to PWoD, community-dwelling PWD had higher rates of pneumonia and hip fracture, but not widowhood. Knowing how often PWD experience these events can aid in anticipatory guidance and care planning for this growing population., (© 2022 The American Geriatrics Society.)

Background: Over the past decade, medical care has shifted from institutions into home settings-particularly among persons with dementia. Yet it is unknown how home-based clinical services currently support persons with dementia, and what factors shape access., Methods: Using the National Health and Aging Trends Study linked to Medicare claims 2012-2017, we identified 6664 community-dwelling adults age ≥ 70 years enrolled in fee-for-service Medicare. Annual assessment of dementia status was determined via self-report, cognitive interview, and/or proxy assessment. Receipt of four types of home-based clinical care (home-based medical care (HBMC) (i.e., nurse practitioner, physician, or physician assistant visits), skilled home health care (SHHC), podiatry visits, and other types of home-based clinical services (e.g., behavioral health)) was assessed annually. We compared age-adjusted rates of home-based clinical care by dementia status and determined sociodemographic, health, and environmental characteristics associated with utilization of home-based clinical care among persons with dementia., Results: Nearly half (44.4%) of persons with dementia received any home-based clinical care annually compared to only 14.4% of those without dementia. Persons with dementia received substantially more of each type of home-based clinical care than those without dementia including a 5-fold increased use of HBMC (95% CI = 3.8-6.2) and double the use of SHHC (95% CI = 2.0-2.5). In adjusted models, Hispanic/Latino persons with dementia were less likely to receive HBMC (OR = 0.32; 95% CI = 0.11-0.93). Use of HBMC, podiatry, and other home-based clinical care was significantly more likely among those living in residential care facilities, in the Northeast and in metropolitan areas., Conclusion: Although almost half of community-dwelling persons with dementia receive home-based clinical care, there is significant variation in utilization based on race/ethnicity and environmental context. Increased understanding as to how these factors impact utilization is necessary to reduce potential inequities in healthcare delivery among the dementia population., (© 2021 The American Geriatrics Society.)

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., (© 2021 The American Geriatrics Society.)

As the locus of long-term care in the United States shifts from institutions to the community, paid caregivers (i.e., home health aides, personal care attendants) are providing more hands-on care to persons with dementia living at home. Yet, little is known about how family caregivers engage with paid caregivers. We conducted in-depth, semi-structured interviews ( n = 15) with family caregivers, of persons living at home with severe dementia, and enriched our findings with data from a second cohort of family caregivers of persons with dementia ( n = 9). Whether paid caregivers were hired privately or employed via a Medicaid-funded agency, family caregivers reported that they needed to manage paid caregivers in the home. Core management tasks were day-to-day monitoring and relationship building with family caregivers; training paid caregivers and coordinating care with homecare agencies was also described. In order to support family caregivers of individuals with dementia at home, it is important consider their preferences and skills in order to effectively manage paid caregivers. Support of efforts to build a high-quality paid caregiving workforce has the potential to improve not only care delivered to persons with dementia, but the experiences of their family caregivers.

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.

Background: Cancer and dementia have often been studied in isolation. We aimed to examine the spatiotemporal trend of inpatient admissions with both cancer and dementia diagnoses., Methods: Using state-wide inpatient claims data, we identified all hospital admissions for patients aged ≥50 years with both cancer and dementia diagnoses in New York State, 2007-2017. We examined the spatiotemporal trend of the admission using a novel Bayesian hierarchical model adjusting for socioeconomic factor, as measured by Yost index., Results: Admissions with the presence of both cancer and dementia diagnoses represented 8.5% of all admissions with a cancer diagnosis, and the proportion increased from 7.1% in 2007 to 9.7% in 2017. The median admission rate was 3.5 (interquartile range: 2.2-5.2) hospitalizations per 1000 population aged ≥50 years, which increased from 2.9 in 2007 to 3.7 in 2017. The admission rate peaked first in 2010 followed by a smaller peak in 2014, before stabilizing at a level higher than the pre-2010 period. Taking into account the spatiotemporal heterogeneity, we found that hospitalizations among those with both cancer and dementia diagnoses were associated with a higher socioeconomic status (the posterior median relative risk for Yost index = 1.046 (95% credible interval: 1.033-1.058))., Conclusions: Hospitalizations of patients with both cancer and dementia increased over time. Cancer care providers and healthcare systems should be prepared to provide prevention and management strategies and engage in complex medical decision-making for this increasingly common patient population comprised of individuals with cancer and dementia., (Copyright © 2021 Elsevier Inc. All rights reserved.)

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., (Copyright © 2021 Elsevier Inc. All rights reserved.)

Dementia and cancer occur commonly in older adults. Yet, little is known about the effect of dementia on cancer treatment and outcomes in patients diagnosed with cancer, and no guidelines exist. We performed a mixed studies review to assess the current knowledge and gaps on the impact of dementia on cancer treatment decision-making, cancer treatment, and mortality. A search in PubMed, Medline, and PsycINFO identified 55 studies on older adults with a dementia diagnosis before a cancer diagnosis and/or comorbid cancer and dementia published in English from January 2004 to February 2020. We described variability using range in quantitative estimates, ie, odds ratios (ORs), hazard ratios (HRs), and risk ratios (RR) when appropriate and performed narrative review of qualitative data. Patients with dementia were more likely to receive no curative treatment (including hospice or palliative care) (OR, HR, and RR range = 0.40-4.4, n = 8), while less likely to receive chemotherapy (OR and HR range = 0.11-0.68, n = 8), radiation (OR range = 0.24-0.56, n = 2), and surgery (OR range = 0.30-1.3, n = 4). Older adults with cancer and dementia had higher mortality than those with cancer alone (HR and OR range = 0.92-5.8, n = 33). Summarized findings from qualitative studies consistently revealed that clinicians, caregivers, and patients tended to prefer less aggressive care and gave higher priority to quality of life over life expectancy for those with dementia. Current practices in treatment-decision making for patients with both cancer and dementia are inconsistent. There is an urgent need for treatment guidelines for this growing patient population that considers patient and caregiver perspectives., (© The Author(s) 2021. Published by Oxford University Press.)

Background/objectives: The Medicare home health benefit provides episodic skilled home-based clinical care to the growing population of community-dwelling persons with dementia. As of January 1, 2020, home health payment changed: episodes shortened from 60 to 30 days, and episodes initiated in the community are now reimbursed at lower rates than episodes following institutional stays. We aim to assess the potential impact of these policy changes on this population., Design/setting: Cross-sectional study using the Medicare claims-linked National Health and Aging Trends Study (NHATS)., Participants: A total of 1,867 NHATS respondents who received home health between 2011 and 2017., Measurements: Dementia was defined through both self-report and a validated cognitive assessment through NHATS. We described the demographic, socioeconomic, and health characteristics of older adults with dementia receiving home health compared with those without dementia. We then assessed the association of dementia with both receiving community-initiated home health (vs postinstitutional) and visit timing during the home health episode., Results: Over a follow-up period of just over 4 years, 50.2% of persons with dementia used home health compared with 15.3% of persons without dementia. Most home health provided to persons with dementia was initiated in the community (61%), compared with 37% of episodes provided to persons without dementia. Persons with dementia were more likely to receive care in days 31 to 60 of the episode compared with those without dementia., Conclusions: Shortening episodes and reimbursing community-initiated episodes at lower rates may disproportionately impact the highly vulnerable population of older adults with dementia, who receive more community-initiated care over longer time periods. Our work highlights the need to better understand the unique role of home health in meeting gaps in both acute- and long-term care systems for older adults with dementia. J Am Geriatr Soc 68:2303-2309, 2020., (© 2020 The American Geriatrics Society.)

Objectives: The main objective of this study was to estimate effects of dementia on Medicaid expenditures in an ethnically diverse community., Methods: The sample included 1,211 Medicare beneficiaries who did not have any Medicaid coverage and 568 who additionally had full Medicaid coverage enrolled in the Washington Heights-Inwood Columbia Aging Project (WHICAP), a multiethnic, population-based, prospective study of cognitive aging in northern Manhattan (1999-2010). Individuals' dementia status was determined using a rigorous clinical protocol. Relationship between dementia and Medicaid coverage and expenditures were estimated using a two-part model., Results: In participants who had full Medicaid coverage, average annual Medicaid expenditures were substantially higher for those with dementia than those without dementia ($50,270 vs. $21,966, p < .001), but Medicare expenditures did not differ by dementia status ($8,458 vs. $9,324, p = .19). In participants who did not have any Medicaid coverage, average annual Medicare expenditures were substantially higher for those with dementia than those without dementia ($12,408 vs. $8,113, p = .02). In adjusted models, dementia was associated with a $6,278 increase in annual Medicaid spending per person after controlling for other characteristics., Discussion: Results highlight Medicaid's contribution to covering the cost of dementia care in addition to Medicare. Studies that do not include Medicaid are unlikely to accurately reflect the true cost of dementia., (Published by Oxford University Press on behalf of The Gerontological Society of America 2019.)

Background: Less educational training is consistently associated with incident dementia among older adults, but associations between income and financial strain with incident dementia have not been well tested in national samples. This is an important gap because, like education, financial resources are potentially modifiable by policy change and strengthening the social safety net. This study tested whether financial resources (income and financial strain) predict six-year incident dementia independent of education and occupation., Methods: The National Health and Aging Trends Study is a prospective cohort study that recruited a nationally representative sample of U.S. Medicare beneficiaries aged ≥65 years. Incident dementia (2013 to 2018) was classified based on diagnosis, cognitive test scores or proxy-reported changes among participants dementia-free in 2012 (n = 3785). Baseline socioeconomic measures included income to poverty ratio (analyzed separately for those < 500% vs. ≥500% poverty threshold), financial strain, education and history of professional occupation. Discrete time survival analysis applied survey weights to account for study design and nonresponse. Coefficients were standardized to compare the strength of associations across the four socioeconomic measures., Results: Adjusting for socioeconomic measures, demographic characteristics, home ownership, retirement, chronic conditions, smoking, BMI and depressive symptoms, higher income (hazard OR = 0.84, 95% CI: 0.74, 0.95 among those < 500% poverty) and higher education (hOR = 0.73, 95% CI: 0.65, 0.83) were associated with lower odds, and financial strain with higher odds (hOR = 1.20, 95% CI: 1.09, 1.31), of incident dementia., Conclusion: Low income and greater financial strain predict incident dementia among older adults and associations are comparable to those of low education among U.S. older adults. Interventions to mitigate financial strain through improving access to economic opportunity and strengthening safety net programs and improving access to them in low income groups may complement other ongoing efforts to prevent dementia.

Introduction: As cancer trajectories change due to screening, earlier diagnoses, living longer with illnesses, and new successful treatments, cancer is increasingly a disease of older adults. While cancer diagnoses themselves are very stressful for patients and families, little is known about the health status, functional limitations, and social resources of older patients before they face a new cancer diagnosis., Materials and Methods: Using the National Health and Aging Trends Study (NHATS), a national survey of older Medicare beneficiaries linked to Medicare claims data, we examined the health characteristics, functional limitations and social and financial resources of older adults before a new diagnosis of lung, breast, prostate or colorectal cancer and how these factors vary by race/ethnicity., Results: We identified 274 community-dwelling older adults with incident cancer diagnoses: lung (30.6%), breast (20.3%), prostate (30.8%), and colorectal (18.3%) representing 1,202,920 older Medicare beneficiaries. The sample was 81% Non-Hispanic White, 10% Non-Hispanic Black, and 9% Hispanic/Other. Before diagnosis, patients had an average of three comorbidities and 29% of patients reported poor/fair health. Almost one-third were living alone, 13% received help with at least one activity of daily living (ADL), 11% had probable dementia and nearly one in ten already received financial help from family members., Discussion: Before an older adult has ever been diagnosed with a major cancer, many face significant health and financial challenges and are dependent on others for care. These needs vary based on cancer type and race/ethnicity and must be considered as clinicians develop individualized care plans for patients alongside caregivers., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Objectives: Paid caregivers (eg, home health aides and personal care attendants) provide hands-on care that helps individuals with dementia live in the community. This study (a) characterizes paid caregiving among community-dwelling individuals with dementia and (b) identifies factors associated with receipt of paid care., Design: Cross-sectional analysis., Setting: The 2015 National Health and Aging Trends Study (NHATS), a nationally representative study of Medicare recipients aged 65 years and older., Participants: Community-dwelling individuals with dementia (n = 899)., Measurements: Paid and family caregiving support was determined by participant or proxy report of help received with functional tasks. Multivariable logistic regression was used to examine factors associated with receipt of paid care. NHATS population sampling weights were used to produce national paid caregiving prevalence estimates., Results: Only 25.5% of community-dwelling individuals with dementia received paid care, and 10.8% received 20 hours or more of paid care per week. For those who received it, paid care accounted for approximately half of the 83 total caregiving hours (paid and family) that they received each week. Among the subgroup of individuals with advanced dementia (those with impairment in dressing, bathing, toileting, and managing medications and finances), nearly half (48.3%) received paid care. Multivariable analysis, adjusting for sociodemographic, family caregiving support, functional, and clinical characteristics, found that the odds of receiving paid care were higher among men (odds ratio [OR] = 1.91; 95% confidence interval [CI] = 1.24-2.95), the unmarried (OR = 2.20; 95% CI = 1.31-3.70), those with Medicaid (OR = 2.16; 95% CI = 1.27-3.66), and those requiring more help with activities of daily living (ADLs) (OR = 1.32; 95% CI = 1.18-1.48) and instrumental ADLs (OR = 1.29; 95% CI = 1.14-1.46)., Conclusions: New ways of making paid caregiving more accessible throughout the income spectrum are required to support family caregivers and respect the preferences of individuals with dementia to remain living in the community. J Am Geriatr Soc 68:186-191, 2019., (© 2019 The American Geriatrics Society.)

Context: Family caregivers play critical and demanding roles in the care of persons with dementia through the end of life., Objectives: The objective of this study was to determine whether caregiving strain increases for dementia caregivers as older adults approach the end of life, and secondarily, whether this association differs for nondementia caregivers., Methods: Participants included a nationally representative sample of community-living older adults receiving help with self-care or indoor mobility and their primary caregivers (3422 dyads). Older adults' death within 12 months of survey was assessed from linked Medicare enrollment files. Multivariable logistic regression was used to assess the association between dementia and end-of-life status and a composite measure of caregiving strain (range: 0-9, using a cut point of 5 to define "high" strain) after comprehensively adjusting for other older adult and caregiver factors., Results: The prevalence of dementia in our sample was 30.1%; 13.2% of the sample died within 12 months. The proportion of caregivers who experienced high strain ranged from a low of 13.5% among nondementia, non-end-of-life caregivers to a high of 35.0% among dementia caregivers of older adults who died within 12 months. Among dementia caregivers, the odds of high caregiving strain were nearly twice as high (aOR = 1.94, 95% CI: 1.10-3.45) for those who were assisting older adults nearing end of life. Among nondementia caregivers, providing care near the end of life was not associated with high strain., Conclusion: Increased strain toward the end of life is particularly notable for dementia caregivers. Interventions are needed to address the needs of this population., (Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: To examine how misidentification of dementia affects estimation of Medicare costs in a largely minority cohort of participants for whom accurate in-person diagnoses are available., Design: Prospective cohort study., Setting: Washington Heights-Inwood Columbia Aging Project, a multiethnic, population-based, prospective study of cognitive aging of Medicare beneficiaries aged 65 and older., Participants: Individuals clinically diagnosed with dementia (n=495) and individuals clinically diagnosed without dementia (n=1,701)., Measurements: Medicare claims-identified dementia was defined according to the presence of any International Classification of Diseases, Ninth Revision, Clinical Modification diagnosis codes for Alzheimer's disease and related dementias in all available claims during the study period. Participant characteristics associated with claims misidentification of dementia were estimated using logistic regression. Effects of dementia misidentification on Medicare expenditures were estimated using generalized linear models., Results: Medicare claims correctly identified 250 of the 495 (51%) dementia cases and 1,565 of the 1,701 (92%) nondementia cases. Sensitivity of claims-identified dementia was 0.51, and specificity was 0.92. Average annual Medicare expenditures were $14,721 for a beneficiary with a clinical diagnosis of dementia, and $18,208 for a beneficiary with claim-identified dementia, suggesting an overestimation of $3,487 per person per year when Medicare claims were used to identify dementia. Total annual expenditures for all beneficiaries with claims-identified dementia were $258,707 lower than that for all those who were clinically diagnosed, suggesting an overall underestimation of total Medicare expenditures if Medicare claims were used to identify dementia. Different types of misidentification have different effects on dementia-related cost estimates. Average annual expenditures per person were highest for false positives., Conclusion: Misidentification of dementia in Medicare claims is common. Using claims to identify dementia may result in significantly biased estimates of the cost of dementia. J Am Geriatr Soc 67:269-276, 2019., (© 2018, Copyright the Author Journal compilation © 2018, The American Geriatrics Society.)

Objective: The objective of this study was to examine whether reduced awareness of memory deficits in individuals with dementia is associated with more frequent need for Medicare home health care services., Methods: Cross-sectional analyses were conducted in a multicenter, clinic-based cohort. In total, 192 participants diagnosed with dementia and their informants were independently asked whether or not the participant demonstrated cognitive symptoms of dementia related to memory and word-finding. Participant self-awareness was measured as the discrepancy between participant and caregiver report of these symptoms. Annual Medicare home health benefit use data was obtained from Medicare claims matched by year to the Predictors study visit., Results: Participants that used home health services had lower awareness scores than those who did not. Awareness remained independently associated with home health use in a logistic regression adjusted for age, gender, education, caregiver relationship, global cognition, dementia subtype, and medical comorbidities., Implications: Reduced self-awareness of memory deficits in individuals with dementia is associated with more frequent use of Medicare home health services. The disproportionate use of in-home assistance as a function of awareness level may reflect dangers faced by patients, and challenges faced by caregivers, when patients have limited awareness of their memory deficits. Current results have implications for clinical care, caregiver education, and models of health care utilization.

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.

Background: Few studies have examined how dementia and comorbidities may interact to affect healthcare expenditures., Objective: To examine whether effects of dementia severity on Medicare expenditures differed for individuals with different levels of comorbidities., Methods: Data are drawn from the Washington Heights-Inwood Columbia Aging Project (WHICAP). Comprehensive clinical assessments of dementia severity were systematically carried out at ∼18 month intervals. Dementia severity was measured by Clinical Dementia Rating (CDR). Comorbidities were measured by a modified Elixhauser comorbidities index. Generalized linear models examined effects of dementia severity, comorbidities, and their interactions on Medicare expenditures (1999-2010)., Results: At baseline, 1,280 subjects were dementia free (CDR = 0, 66.4%), 490 had very mild dementia (CDR = 0.5, 25.4%), 108 had mild dementia (CDR = 1, 5.6%), and 49 had moderate/severe dementia (CDR = 2/3, 2.5%). Average annual Medicare expenditures for individuals with moderate/severe dementia were more than twice as high as those who were dementia free (CDR = 0: $9,108, CDR = 0.5/1: $11,664, CDR≥2: $19,604, p < 0.01). Expenditures were approximately 10 times higher among those with≥3 comorbidities than among those with no comorbidities ($2,612 for those with no comorbidities, to $6,109 for those with 1, $10,656 for those with 2, and $30,244 for those with≥3 comorbidities, p < 0.001). Dementia severity was associated with higher expenditures, but comorbidities were the most important predictor of expenditures. We did not find strong interaction effects between number of comorbidities and dementia severity., Conclusions: Increasing dementia severity and higher comorbidities are associated with higher Medicare expenditures. Care of individuals with dementia should focus on management of comorbidities.

Background: Few studies have examined patterns of health care utilization and costs during the period around incident dementia., Methods: Participants were drawn from the Washington Heights-Inwood Columbia Aging Project, a multiethnic, population-based, prospective study of cognitive aging of Medicare beneficiaries in a geographically defined area of northern Manhattan. Medicare utilization and expenditure were examined in individuals with clinically diagnosed dementia from 2 years before until 2 years after the initial diagnosis. A sample of non-demented individuals who were matched on socio-demographic and clinical characteristics at study enrollment was used as controls. Multivariable regression analysis estimated effects on Medicare utilization and expenditures associated with incident dementia., Results: During the 2 years before incident dementia, rates of inpatient admissions and outpatient visits were similar between dementia patients and non-demented controls, but use of home health and skilled nursing care and durable medical equipment were already higher in dementia patients. Results showed a small but significant excess increase associated with incident dementia in inpatient admissions but not in other areas of care. In the 2 years before incident dementia, total Medicare expenditures were already higher in dementia patients than in non-demented controls. But we found no excess increases in Medicare expenditures associated with incident dementia., Conclusions: Demand for medical care already is increasing and costs are higher at the time of incident dementia. There was a small but significant excess risk of inpatient admission associated with incident dementia., (Published by Oxford University Press on behalf of the Gerontological Society of America 2015.)

Objectives: The aim of this study is to examine the relative contribution of functional impairment and cognitive deficits on risk of hospitalization and costs., Methods: A prospective cohort of Medicare beneficiaries aged 65 and older who participated in the Washington Heights-Inwood Columbia Aging Project (WHICAP) were followed approximately every 18 months for over 10 years (1805 never diagnosed with dementia during study period, 221 diagnosed with dementia at enrollment). Hospitalization and Medicare expenditures data (1999-2010) were obtained from Medicare claims. Multivariate analyses were conducted to examine (1) risk of all-cause hospitalizations, (2) hospitalizations from ambulatory care sensitive (ACSs) conditions, (3) hospital length of stay (LOS), and (4) Medicare expenditures. Propensity score matching methods were used to reduce observed differences between demented and non-demented groups at study enrollment. Analyses took into account repeated observations within each individual., Results: Compared to propensity-matched individuals without dementia, individuals with dementia had significantly higher risk for all-cause hospitalization, longer LOS, and higher Medicare expenditures. Functional and cognitive deficits were significantly associated with higher risks for hospitalizations, hospital LOS, and Medicare expenditures. Functional and cognitive deficits were associated with higher risks of for some ACS but not all admissions., Conclusions: These results allow us to differentiate the impact of functional and cognitive deficits on hospitalizations. To develop strategies to reduce hospitalizations and expenditures, better understanding of which types of hospitalizations and which disease characteristics impact these outcomes will be critical., (Copyright © 2014 John Wiley & Sons, Ltd.)

Objective: To examine the effects of caregiver and patient characteristics on caregivers' medical care use and cost., Methods: One hundred forty-seven caregiver/patient dyads were followed annually for 6 years in three academic Alzheimer's disease centers in the United States. Logistic, negative binomial, and generalized linear mixed models were used to examine overall effects of caregiver/patient characteristics on caregivers' hospitalizations, doctor visits, outpatient tests and procedures, and prescription and over-the-counter medications., Results: Patients' comorbid conditions and dependence were associated with increased health-care use and costs of caregivers. Increases in caregiver depressive symptoms are associated with increases in multiple domains of caregivers' health-care use and costs., Discussion: Findings suggest expanding our focus on dementia patients to include family caregivers to obtain a fuller picture of effects of caregiving. Primary care providers should integrate caregivers' needs in health-care planning and delivery. Clinical interventions that treat patients and caregivers as a whole will likely achieve the greatest beneficial effects., (Copyright © 2015 The Alzheimer's Association. All rights reserved.)

Caregiving may be burdensome to caregivers, negatively affecting health and impacting decisions to institutionalize patients. It is unclear how caregiver depression changes over longer periods or whether heterogeneous trajectories for caregivers are apparent. The goals of this article are to characterize the course of depressive symptoms among caregivers over time and to examine the impact of baseline patient and caregiver characteristics on these trajectories. Patients with dementia and their caregivers were followed every 6 months for up to 6 years or until death (n = 133). Growth mixture modeling identified trajectories of caregiver depression over time. Most caregivers had stable trajectories of symptoms, with a smaller subset showing evidence of wear-and-tear. Patient clinical characteristics had no impact on symptom course for caregivers. Future work should utilize a longitudinal perspective and consider that there may be heterogeneous trajectories for caregivers. Those caregivers who follow a wear-and-tear trajectory may require targeted interventions to improve outcomes.

Background: Behavioral and psychological symptoms of dementia (BPSDs) are routinely cited as important predictors of caregiver burden and depression. Although BPSDs include a wide variety of patient behaviors, they are routinely grouped together as one construct to differentiate them from cognitive symptoms of dementia. Determining the specific BPSDs that result in increased depression and burden for caregivers may elucidate the stress process for caregivers and facilitate the development of effective interventions for caregivers., Methods: We conducted a systematic review of English-language articles published from 1990 to 2010 to determine whether there are known symptoms or symptom clusters which exert undue negative impact on caregiver depression and burden. Additionally, we review systems used for classifying BSPD symptom clusters and determine whether there have been any mechanisms studied by which individual BPSD symptoms negatively affect caregivers. Finally, we examine how the role of timing of symptoms has been examined within the literature., Results: Thirty-five original research articles examined the impact of an individual behavior symptom on caregiver burden or depression/depressive symptoms. The studies had no consistent system for categorizing symptoms. Although depression, aggression, and sleep disturbances were the most frequently identified patient symptoms to impact negatively on caregivers, a wide range of symptoms was associated with caregiver burden and depression., Conclusions: The evidence is not conclusive as to whether some symptoms are more important than others. The studies reviewed were largely exploratory relative to the differential impact of individual BPSDs and did not focus on testing causal mechanisms by which specific symptoms exert more impact on caregiver mental health than others. Future research may benefit from the re-conceptualization of BPSDs from the perspective of their impact on the caregiver to examine hypothesis-driven differences among BPSD symptom clusters.

Millions of older Americans are homebound and may benefit from home-based medical care. We characterized the receipt of this care among community-dwelling, fee-for-service Medicare beneficiaries ages sixty-five and older surveyed in the National Health and Aging Trends Study between 2011 and 2017. Five percent of those surveyed received any home-based medical care between 2011 and 2017 (mean follow-up time per person was 3.4 years), and 75 percent of home-based medical care recipients were homebound. Only 11 percent of the total homebound population (approximately 4.4 million fee-for-service Medicare beneficiaries in 2017) received any home-based medical care between 2011 and 2017. Receipt of home-based medical care was more common among homebound beneficiaries living in metropolitan areas and assisted living facilities, which suggests that geographic factors create operational efficiencies for home-based medical care practices that may improve their financial sustainability within the fee-for-service reimbursement setting. The significant unmet needs of this high-need, high-cost population and the known health and cost benefits of home-based medical care should spur stakeholders to expand the availability of this care.

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: 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. [ABSTRACT FROM AUTHOR]

The purpose of this study was to conduct an evaluation of a home modification and repair pilot program implemented within Mount Sinai Visiting Doctors. This program enrolled patients via referral from the home-based clinical team between August 15, 2019 and December 31, 2020. Patient functional status and home modification and repair needs were assessed by a social worker and subsequent interventions were tracked. This study includes two separate, concurrent analyses: (1) descriptive analyses based on data on program enrollees, repairs, and costs and (2) provider perspectives on the program. The program enrolled 33 patients. The average spending per patient was $528. The clinical team found this program feasible to implement and helped reduce burnout. Future program implementation and expansion will require more investment in staffing to ensure timely needs assessment and service delivery, and the addition of an occupational therapist to better assess and meet patient functional needs. [ABSTRACT FROM AUTHOR]

Objectives Advance care planning (ACP) typically comprises formal preparations (i.e. living will and/or durable power of attorney for health care) and informal discussions with family members and health care providers. However, some people complete formal documents without discussing them with others. If they become incapacitated, their appointed decision makers may lack guidance on how to interpret or enact their formal wishes. We document the prevalence and correlates of this partial approach to ACP. Method Using multinomial logistic regression models and data from a U.S. sample of 4,836 older adults in the 2018 wave of the National Health and Aging Trends Study (NHATS), this brief report evaluated associations between social integration indicators and the odds of completing (a) both discussions and formal plans (two-pronged ACP), (b) discussions only, (c) no ACP, and (d) formal ACP only (reference category). We adjust for demographic and health characteristics established as correlates of ACP. Results A minority (15%) of NHATS participants reported formal plans without having discussed them. Indicators of social isolation (e.g. smaller social networks and fewer social activities) increased the odds of engaging in formal planning only compared to two-pronged ACP. Socioeconomic disadvantage and probable dementia reduced the odds of having end-of-life conversations, whether as one's only preparation or in tandem with formal preparations. Discussion Socially isolated persons are especially likely to do formal planning only, which is considered less effective than two-pronged ACP. Health care professionals should recognize that older adults with few kin may require additional support and guidance when doing ACP. [ABSTRACT FROM AUTHOR]

BACKGROUND/OBJECTIVES Hospice care confers well‐documented benefits to patients and their families, but it is underutilized. One potential reason is inadequate family support to make end‐of‐life decisions and care for older adults on hospice at home. We assessed the association between amount of family support and hospice use among a population of decedents and among specific illness types. DESIGN Prospective cohort study using the National Health and Aging Trends Study waves 2011 to 2017, linked to Medicare claims data. SETTING Contiguous United States. PARTICIPANTS A total of 1,868 NHATS decedents. MEASUREMENTS Outcome variable was 1 day or longer of hospice. Family caregiving intensity was measured by self‐reported hours of care per week and number of caregivers. Covariates included probable dementia status and other demographic, clinical, and functional characteristics. RESULTS: At the end of life, hours of family caregiving and numbers of helpers vary widely with individuals with dementia receiving the most hours of unpaid care (mean = 64.5 hours per week) and having 2.4 unpaid caregivers on average. In an adjusted analysis, older adults with cancer receiving 40 hours and more of unpaid care/week as compared with fewer than 6 hours per week were twice as likely to receive hospice care at the end of life (odds ratio = 2.0; 95% confidence interval = 1.0–4.1). This association was not seen among those with dementia or among decedents in general. No significant association was found between number of caregivers and hospice use at the end of life. CONCLUSION: Older adults at the end of life receive a high number of hours of help at the end of life, many from more than one caregiver, which may shape hospice access. Better understanding of disparities in hospice use can facilitate timely access to care for older adults with a serious illness. J Am Geriatr Soc 68:2288–2296, 2020. [ABSTRACT FROM AUTHOR]

Objectives: The Perceived Stress Scale (PSS) is the most widely used measure of perceived stress; however, minimal psychometric evaluation has been performed among Hispanic respondents, and even less among Hispanic caregivers to persons with Alzheimer's disease and related disorders (ADRDs).Design: Secondary data analysis.Setting: New York City, NY, USA.Participants: A sample of 453 community dwelling Hispanic caregivers to patients with ADRD.Measurements: Latent variable models were used to evaluate the PSS. Exploratory and confirmatory factor analyses were used to examine unidimensionality. Differential item functioning (DIF) was examined for age, education, and language using the graded item response model.Results: The factor and bifactor analyses results supported essential unidimensionality of the item set; however, positively worded items were observed using response item theory to be less informative than the negatively worded items. Reliability estimates were high. Salient DIF was not observed for age, education, or language of interview using the primary DIF detection method. Sensitivity analyses using a second DIF detection method identified uniform language-DIF for the item, "In the last month, how often have you felt that you were on top of things?" However, the non-compensatory DIF value was below the threshold considered salient.Conclusions: In summary, the 10-item PSS performed well in a sample of English- and Spanish-speaking Hispanic caregivers to patients with ADRD. Very little DIF, and none of high magnitude and impact, was observed. However, the negatively worded items, perhaps because they are more directly reflective of stress, were more informative. In the context of a short-form measure or computerized adaptive test, more informative items are those that would be selected for inclusion. [ABSTRACT FROM AUTHOR]

OBJECTIVES For patients who require frequent and intensive therapy services after hospitalization, rehabilitation is predominantly provided in skilled nursing facilities (SNFs). Delivering post‐acute rehabilitation in patientsʼ homes offers a potential alternative. Our aim was to describe and evaluate services and functional outcomes and then identify factors associated with the provision of a 30‐day post‐acute care (PAC) bundle of rehabilitation, medical, and social services provided via the Rehabilitation at Home (RaH) program. DESIGN Single‐arm retrospective review of patients participating in the RaH program. SETTING Multidisciplinary home‐based delivery of PAC in Manhattan. PARTICIPANTS Individuals 18 years or older residing in a specified catchment area and qualifying for SNF‐based rehabilitation services from October 2015 to September 2017. RESULTS: A total of 237 patients participated in RaH over 264 episodes of care. Participants were predominantly older than 85 years (57%; mean = 84.2; standard deviation [SD] = 10.0 years) and of non‐Hispanic white (70%) race and ethnicity. Most were admitted after hospitalization (88.2%) for 117 different diagnostic related groups. Average length of stay in RaH was 14.2 (SD = 6.5) days with patients receiving 1.83 (SD = 2.22) medical provider, 1.67 (SD = 1.58) nursing, and 5.24 (SD = 1.05) physical therapist visits weekly. Most of the patients fully or almost fully met their goals for bed mobility (65%), bed transfer (69%), chair transfer (67%), and ambulation (64%) with the majority achieving moderate or considerable (61%) global functional improvement. Achieving moderate or considerable global improvement was negatively associated with dementia diagnosis (odds ratio [OR] =.23; 95% confidence interval [CI] =.08‐.71) and positively associated with higher baseline ambulation (OR = 5.51; 95% CI = 2.22‐13.66). At 30 days, 87.3% of participants were living in the community. CONCLUSION: Delivering SNF‐level post‐acute rehabilitation care in patientsʼ homes for a broad range of diagnoses is feasible and associated with functional improvement. This approach may help older adults maintain living status in the community. J Am Geriatr Soc 68:1584‐1593, 2020. See related editorial by Malone et al. in this issue. [ABSTRACT FROM AUTHOR]