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1.
Am J Ind Med ; 67(7): 582-591, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38735862

ABSTRACT

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


Subject(s)
Emergency Responders , Frailty , September 11 Terrorist Attacks , Humans , Pilot Projects , Middle Aged , Frailty/epidemiology , Male , Female , Aged , Emergency Responders/statistics & numerical data , Risk Factors , New York City/epidemiology , Occupational Exposure/adverse effects , Accidental Falls/statistics & numerical data , Cohort Studies , Prevalence
2.
J Aging Soc Policy ; 36(4): 562-580, 2024 Jul 03.
Article in English | MEDLINE | ID: mdl-38627368

ABSTRACT

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


Subject(s)
Caregivers , Humans , Caregivers/psychology , Aged , United States , Data Collection/methods , Surveys and Questionnaires , Aging , Family/psychology
3.
Ann Surg ; 277(4): e907-e913, 2023 04 01.
Article in English | MEDLINE | ID: mdl-36892516

ABSTRACT

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


Subject(s)
Aftercare , Caregivers , Humans , Female , Aged , United States , Male , Medicare , Patient Discharge , Family
4.
Med Care ; 61(11): 805-812, 2023 Nov 01.
Article in English | MEDLINE | ID: mdl-37733394

ABSTRACT

OBJECTIVES: To evaluate the effectiveness and safety of Rehabilitation-at-Home (RaH), which provides high-frequency, multidisciplinary post-acute rehabilitative services in patients' homes. DESIGN: Comparative effectiveness analysis. SETTING AND PARTICIPANTS: Medicare Fee-For-Service patients who received RaH in a Center for Medicare and Medicaid Innovation Center Demonstration during 2016-2017 (N=173) or who received Medicare Skilled Nursing Facility (SNF) care in 2016-2017 within the same geographic service area with similar inclusion and exclusion criteria (N=5535). METHODS: We propensity-matched RaH participants to a cohort of SNF patients using clinical and demographic characteristics with exact match on surgical and non-surgical hospitalizations. Outcomes included hospitalization within 30 days of post-acute admission, death within 30 days of post-acute discharge, length of stay, falls, use of antipsychotic medication, and discharge to community. RESULTS: The majority of RaH participants were older than or equal to 85 years (57.8%) and non-Hispanic white (72.2%) with mean hospital length of stay of 8.1 (SD 7.6) days. In propensity-matched analyses, 10.1% (95% CI: 0.5%, 19.8) and 4.2% (95% CI: 0.1%, 8.5%) fewer RaH participants experienced hospital readmission and death, respectively. RaH participants had, on average, 2.8 fewer days (95% CI 1.4, 4.3) of post-acute care; 11.4% (95% CI: 5.2%, 17.7%) fewer RaH participants experienced fall; and 25.8% (95% CI: 17.8%, 33.9%) more were discharged to the community. Use of antipsychotic medications was no different. CONCLUSIONS AND IMPLICATIONS: RaH is a promising alternative to delivering SNF-level post-acute RaH. The program seems to be safe, readmissions are lower, and transition back to the community is improved.

5.
J Gen Intern Med ; 38(4): 1001-1007, 2023 03.
Article in English | MEDLINE | ID: mdl-35945471

ABSTRACT

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


Subject(s)
Medicare , Patient Acceptance of Health Care , Humans , Aged , United States/epidemiology , Aged, 80 and over , Cohort Studies , Fee-for-Service Plans , Ambulatory Care , Health Expenditures
6.
J Gen Intern Med ; 38(15): 3355-3361, 2023 Nov.
Article in English | MEDLINE | ID: mdl-37349637

ABSTRACT

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.


Subject(s)
Dementia , Quality of Life , Aged , Humans , United States/epidemiology , Retrospective Studies , Retirement , Medicare , Caregivers , Dementia/epidemiology , Dementia/therapy
7.
Health Expect ; 26(5): 1965-1976, 2023 10.
Article in English | MEDLINE | ID: mdl-37394734

ABSTRACT

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


Subject(s)
Caregivers , Neoplasms , Humans , Decision Making , Quality of Life , Family , Neoplasms/therapy
8.
BMC Health Serv Res ; 23(1): 120, 2023 Feb 06.
Article in English | MEDLINE | ID: mdl-36747175

ABSTRACT

BACKGROUND: As more Americans age in place, it is critical to understand care delivery in the home. However, data on the range of home-based services provided by Medicare is limited. We define a taxonomy of clinical care in the home funded through fee-for-service Medicare and methods to identify receipt of those services. METHODS: We analyzed Fee-for-service (FFS) Medicare claims data from a nationally-representative cohort of older adults, the National Health and Aging Trends Study (NHATS), to identify home-based clinical care. We included 6,664 NHATS enrollees age ≥ 70 and living in the community, observed an average of 3 times each on claims-linked NHATS surveys. We examined provider and service type of home-based clinical care to identify a taxonomy of 5 types: home-based medical care (physician, physician assistant, or nurse practitioner visits), home-based podiatry, skilled home health care (SHHC), hospice, and other fee-for-service (FFS) home-based care. We further characterized home-based clinical care by detailed care setting and visit types. RESULTS: From 2011-2016, 17.8%-20.8% of FFS Medicare beneficiaries age ≥ 70 received Medicare-funded home-based clinical care. SHHC was the most common service (12.8%-16.1%), followed by other FFS home-based care (5.5%-6.5%), home-based medical care (3.2%-3.9%), and hospice (2.6%-3.0%). Examination of the other-FFS home-based care revealed imaging/diagnostics and laboratory testing to be the most common service. CONCLUSIONS: We define a taxonomy of clinical care provided in the home, serving 1 in 5 FFS Medicare beneficiaries. This approach can be used to identify and address research and clinical care gaps in home-based clinical care delivery.


Subject(s)
Home Care Services , Hospice Care , Humans , Aged , United States , Medicare , Fee-for-Service Plans , Surveys and Questionnaires
9.
Alzheimers Dement ; 19(12): 5852-5859, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37718630

ABSTRACT

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.


Subject(s)
Dementia , Neurodegenerative Diseases , Humans , Aged , United States/epidemiology , Dementia/epidemiology , Retrospective Studies , Medicare , Health Care Costs , Patient Acceptance of Health Care , Death
10.
Death Stud ; : 1-13, 2023 Sep 07.
Article in English | MEDLINE | ID: mdl-37676820

ABSTRACT

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

11.
Cancer ; 128(10): 2015-2024, 2022 05 15.
Article in English | MEDLINE | ID: mdl-35285946

ABSTRACT

BACKGROUND: Adult-children caring for a parent with cancer comprise a significant segment of caregivers. Yet less is known about adult-child caregivers, their burden, or caregivers' and patients' gender's impact, which may differ from the well-studied spousal caregiver. This knowledge gap may hinder efforts to ameliorate adult-children's caregiver burden. METHODS: We analyzed caregiver surveys from the Cancer Care Outcomes Research and Surveillance Consortium, a multi-regional population-based study of patients with colorectal or lung cancer. Using t tests and multivariate regression models, we assessed whether adult-child and spousal caregivers' caregiving responsibilities and social/emotional and financial burdens differed and used structural equation models (SEMs) to examine mediating factors. RESULTS: Compared with spouses/partners (N = 1007), adult-children (N = 227) spent less time caregiving (14 vs 23 hours/week; P < .001), but experienced higher social/ emotional burden (P < .01). In models adjusted for objective caregiving burden measures and demographics, adult-children's social/emotional (P < .05) and financial burdens (P < .01) were greater than spouses'. Poor communication quality was associated with greater social/emotional burden for both groups (P < .05). SEMs indicated that gender concordance between caregivers and patients (eg, daughters caring for mothers) and caregiver employment increased the difference between adult-child and spouses' social/emotional burden, whereas caregiver-patient relationship quality reduced it. CONCLUSIONS: Adult-children spend less time caregiving than spouses/partners, but have higher social/emotional and financial caregiving burdens, partially due to adult-children's employment, caregiver-patients' gender concordance, and relationship quality. Gender concordance's contribution to greater social/emotional burden adds important context to prior findings, indicating female caregivers experience the most burden. Interventions that improve caregiver-patient communication may reduce both adult-child and spousal caregiver burden.


Subject(s)
Caregiver Burden , Cost of Illness , Adult , Adult Children/psychology , Caregivers/psychology , Female , Humans , Spouses/psychology
12.
J Gen Intern Med ; 37(5): 1177-1182, 2022 04.
Article in English | MEDLINE | ID: mdl-35167063

ABSTRACT

BACKGROUND: Homebound older adults have heightened risks for isolation and negative health consequences, but it is unclear how COVID-19 has impacted them. We examine social contact and mood symptoms among previously homebound older adults during the COVID-19 pandemic. DESIGN/SETTING: Cross-sectional analysis using data from the National Health and Aging Trends Study (NHATS), a nationally-representative longitudinal study of aging in the USA. PARTICIPANTS: A total of 3,112 community-dwelling older adults in 2019 who completed the COVID-19 survey in the summer/fall of 2020. MEASUREMENTS: Homebound status was defined via self-report as rarely/never leaving home or leaving the house with difficulty or help in the prior month. We measured limited social contact during COVID-19 (in-person, telephone, video or email contacts

Subject(s)
COVID-19 , Homebound Persons , Aged , COVID-19/epidemiology , Cross-Sectional Studies , Humans , Loneliness , Longitudinal Studies , Pandemics
13.
Support Care Cancer ; 30(11): 9625-9633, 2022 Nov.
Article in English | MEDLINE | ID: mdl-36190556

ABSTRACT

PURPOSE: Black and Hispanic cancer patients experience many worse care quality and health outcomes than non-Hispanic White patients, yet less is known about disparities in caregiving responsibilities and burden among cancer caregivers. METHODS: We analyzed cross-sectional data from Cancer Care Outcomes Research and Surveillance consortium, a large multi-regional, population-based study of colorectal and lung cancer patients and their caregivers. Bivariate and multivariable regression models assessed differences by racial and ethnic groups in caregiving responsibilities and social/emotional, financial, and health burdens. Structural equation models estimated whether sociocultural resources (social support, caregiving preparedness, caregiver-patient communication) mediated racial and ethnic differences in caregiver burden. RESULTS: Compared with non-Hispanic White caregivers (N = 1,169), Black (N = 220) and Hispanic (N = 84) caregivers spent more time caregiving (18 vs. 26 vs. 26 h/week; P < 0.001), completed more tasks (6.8 vs. 7.6 vs. 8.7; P < 0.05), and reported greater financial burden (P = 0.02). Yet, compared to non-Hispanic Whites, Hispanic caregivers reported similar social/emotional and health burdens, while Black caregivers reported lower levels (P < 0.01). In adjusted models, disparities in financial burden disappeared, and Hispanic caregivers had less health burden than non-Hispanic White caregivers (P = 0.01). Social support and/or caregiving preparedness partially mediated the Black-White gap for all three types of burdens. CONCLUSIONS: Black and Hispanic cancer caregivers perform more caregiving and report greater financial burden than non-Hispanic White caregivers, but experience lower or equivalent social/emotional and health burdens. Racial differences in caregivers' social support and caregiving preparedness levels partially explain Black-White burden differences. Research and policy should address Black and Hispanic caregivers' increased financial burden.


Subject(s)
Ethnicity , Neoplasms , Humans , Caregiver Burden , Cross-Sectional Studies , Racial Groups , Caregivers/psychology , Neoplasms/therapy
14.
BMC Health Serv Res ; 22(1): 1021, 2022 Aug 10.
Article in English | MEDLINE | ID: mdl-35948923

ABSTRACT

BACKGROUND: Although racial and ethnic minorities disproportionately use some hospitals, hospital-based racial and ethnic composition relative to geographic region and its association with quality indicators has not been systematically analyzed. METHODS: We used four race and ethnicity categories: non-Hispanic white (NHW), non-Hispanic black (NHB), Hispanic, and Asian/Pacific Islander/Alaskan Native/American Indian (API/AIAN), as well as a combined non-NHW category, from the 2010 (latest year publicly available) Medicare Institutional Provider & Beneficiary Summary public use file for 84 hospitals in the New York City region. We assessed the relative distribution of race and ethnicity across hospitals grouped at different geographic levels (region, county, hospital referral region [HRR], or hospital service areas [HSA]) using the dissimilarity index. Hospital characteristics included quality star ratings, essential professional services and diagnostic/treatment equipment, bed size, total expenses, and patients with dual Medicare and Medicaid enrollment. We assessed Spearman's rank correlation between hospital-based racial and ethnic composition and quality/structural measures. RESULTS: Dissimilarity Index decreases from region (range 30.3-40.1%) to county (range 13.7-23.5%), HRR (range 10.5-27.5%), and HSA (range 12.0-16.9%) levels. Hospitals with larger non-NHW patients tended to have lower hospital ratings and higher proportions of dually-enrolled patients. They were also more likely to be safety net hospitals and non-federal governmental hospitals. CONCLUSIONS: In the NYC metropolitan region, there is considerable hospital-based racial and ethnic segregation of Medicare patients among non-NHW populations, extending previous research limited to NHB. Availability of data on racial and ethnic composition of hospitals should be made publicly available for researchers and consumers.


Subject(s)
Ethnicity , Medicare , Aged , Hispanic or Latino , Hospitals , Humans , New York City , United States
15.
Am J Epidemiol ; 190(12): 2571-2581, 2021 12 01.
Article in English | MEDLINE | ID: mdl-34343247

ABSTRACT

We aimed to examine the association of young and middle-aged sibling bereavement with use of health services and risk of developing mental health disorders over 24 months before and after sibling's death. All persons aged 18-56 years who died of illness/natural causes between 2009 and 2016 were identified in the Danish Register of Causes of Death. The study sample included 31,842 bereaved siblings and 31,842 age- and sex-matched controls. Overall, the largest effect was observed for increased use of psychological services: For women, the peak was observed 4-6 months after the death (odds ratio (OR) = 3.31, 95% confidence interval (CI): 2.85, 3.85) and for men in the first 3 months after the death (OR = 2.63, 95% CI: 2.06, 3.36). The peak of being diagnosed in a hospital setting with any mental disorder for women was observed in the period 13-15 months after sibling death (OR = 1.52, 95% CI: 1.11, 2.07) and for men in the first 3 months after the death (OR = 1.75, 95% CI: 1.32, 2.32). Young and middle-aged adults who experienced the death of a sibling are more likely to use health services and are at risk of poorer mental health outcomes. During the bereavement process, young and middle-aged siblings are especially in need of mental health support, such as professional psychological counseling.


Subject(s)
Bereavement , Mental Health/statistics & numerical data , Patient Acceptance of Health Care/statistics & numerical data , Siblings/psychology , Adolescent , Adult , Comorbidity , Denmark/epidemiology , Female , Health Services/statistics & numerical data , Humans , Male , Middle Aged , Sex Factors , Socioeconomic Factors , Young Adult
16.
Palliat Med ; 35(9): 1652-1662, 2021 Oct.
Article in English | MEDLINE | ID: mdl-33823696

ABSTRACT

BACKGROUND: Seriously ill individuals rely heavily on family caregivers at the end of life. Yet many do not have family support. AIM: To characterize the size and composition of decedents' family networks by cause of death, demographic, clinical, socioeconomic, and geographic characteristics. DESIGN: A cross-sectional population-level study with data collected from nation-wide registers. SETTING/PARTICIPANTS: All adults in Denmark born between 1935 and 1998 who died of natural causes between 2009 and 2016 were linked at the time of death to living adult spouses/partners, children, siblings, parents, and grandchildren. RESULTS: Among 175,755 decedents (median age: 68 years, range: 18-81 years), 61% had a partner at the time of death and 78% had at least one adult child. Ten percent of decedents had no identified living adult family members. Decedents with family had a median of five relatives. Males were more likely to have a spouse/partner (65%) than females (56%). While 93% of decedents dying of cancer had adult family, only 70% of individuals dying of dementia had adult family at the time of death. The majority of cancer decedents co-resided or lived within 30 km of family (88%), compared to only 65% of those dying from psychiatric illness. CONCLUSIONS: While the majority of adults had an extensive family network at the time of death, a substantial proportion of decedents had no family, suggesting the need for non-family based long-term service and support systems. Assessment of family networks can expand our understanding of the end-of-life caregiving process and inform palliative care delivery.


Subject(s)
Terminal Care , Adult , Adult Children , Aged , Caregivers , Child , Cross-Sectional Studies , Family , Female , Humans , Male , Palliative Care
17.
Home Health Care Serv Q ; : 1-15, 2021 Jul 23.
Article in English | MEDLINE | ID: mdl-34301160

ABSTRACT

Research on professional burnout during the pandemic has focused on hospital-based health care workers. This study examined the psychological impact of the pandemic on home-based primary care (HBPC) providers. We interviewed 13 participants from six HBPC practices in New York City including medical/clinical directors, program managers, nurse practitioners, and social workers and analyzed the transcripts using inductive qualitative analysis approach. HBPC providers experienced emotional exhaustion and a sense of reduced personal accomplishment. They reported experiencing grief of losing many patients at once and pressure to adapt to changing circumstances quickly. They also reported feeling guilty for failing to protect their patients and reduced confidence in their professional expertise. Strategies to combat burnout included shorter on-call schedules, regular condolence meetings to acknowledge patient deaths, and peer support calls. Our study identifies potential resources to improve the well-being and reduce the risk of burnout among HBPC providers.

18.
Soc Work Health Care ; 60(4): 354-368, 2021.
Article in English | MEDLINE | ID: mdl-33645451

ABSTRACT

Hospital at Home (HaH) provides acute, hospital-level care at home and post-discharge follow-up. Through a review of 293 HaH admissions conducted by an urban, multidisciplinary HaH program from 2014 to 2017, we find that the social worker is involved in 71% of admissions and plays a crucial role in pre-emergency department discharge home care and safety screening, home intake, follow-up support, and transition of care to primary care providers and community-based services. We describe the social work activities involved in this model of care and present composite case studies for further illustration.


Subject(s)
Home Care Services , Patient Discharge , Aftercare , Hospitals, Urban , Humans , Social Workers
19.
Alzheimer Dis Assoc Disord ; 34(4): 293-298, 2020.
Article in English | MEDLINE | ID: mdl-32826426

ABSTRACT

INTRODUCTION: Dependence in Alzheimer disease has been proposed as a holistic, transparent, and meaningful representation of disease severity. Modeling clusters in dependence trajectories can help understand changes in disease course and care cost over time. METHODS: Sample consisted of 199 initially community-living patients with probable Alzheimer disease recruited from 3 academic medical centers in the United States followed for up to 10 years and had ≥2 Dependence Scale recorded. Nonparametric K-means cluster analysis for longitudinal data (KmL) was used to identify dependence clusters. Medicare expenditures data (1999-2010) were compared between clusters. RESULTS: KmL identified 2 distinct Dependence Scale clusters: (A) high initial dependence, faster decline, and (B) low initial dependence, slower decline. Adjusting for patient characteristics, 6-month Medicare expenditures increased over time with widening between-cluster differences. DISCUSSION: Dependence captures dementia care costs over time. Better characterization of dependence clusters has significant implications for understanding disease progression, trial design and care planning.


Subject(s)
Activities of Daily Living , Alzheimer Disease/economics , Disease Progression , Medicare/economics , Aged , Alzheimer Disease/psychology , Female , Health Expenditures , Humans , Longitudinal Studies , Male , United States
20.
Int J Geriatr Psychiatry ; 35(5): 553-563, 2020 05.
Article in English | MEDLINE | ID: mdl-31994215

ABSTRACT

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


Subject(s)
Brain Injuries, Traumatic/complications , Disabled Persons/psychology , Loneliness/psychology , Activities of Daily Living , Aged , Brain Injuries, Traumatic/epidemiology , Brain Injuries, Traumatic/psychology , Chronic Pain/epidemiology , Comorbidity , Disabled Persons/statistics & numerical data , Female , Humans , Male , Middle Aged , Retrospective Studies
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