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

Death and dying are woven throughout the work of home care aides, and yet the care they provide at the end of life (EOL) remains poorly understood. This is due in part to the multiple circumstances under which aides provide EOL care. In this paper, we elucidate the EOL care experiences of aides working in home care agencies in New York City. We conducted in-depth interviews with 29 home care aides, and we analyzed these data using inductive, team-based methods. Our findings show that aides may not be aware of or accept a client's EOL status, and they may avoid EOL care. These conditions shape EOL care, and we detail the committed forms of care aides provide when they are aware and accepting. We recommend improved training, support systems, and policy change to enhance aides' contributions to EOL care, while protecting aides' health and well-being. [ABSTRACT FROM AUTHOR]

Home and community-based services (HCBSs) such as home care and adult day centers are vital to supporting adults with dementia in community settings. We investigated whether HCBS use (use of both home care and adult day, use of one service, and use of neither service) varied between adults receiving care from three types of health-care teams with case management from social workers and nurses, and by comorbidity level, using 2019 data of 143,281 patients with dementia in the Veterans Health Administration. We compared HCBS use by patients' type of case-managed team (Home-Based Primary Care, geriatrics-based primary care, and dementia-focused specialty care) to patients in none of these teams, stratified by patients' non-dementia comorbidities (<4 or ≥4). Each type of health-care team was associated with both home care and adult day services, at each level of comorbidity. Home-Based Primary Care was most consistently associated with other forms of HCBS use, followed by Dementia Clinics and geriatrics-based primary care, for patients with ≥4 non-dementia comorbidities. Our findings suggest that case management in primary and specialty care settings is a contributor to the use of critical community supports by patients with the most complex needs. [ABSTRACT FROM AUTHOR]

Background: There is limited evidence regarding the challenges of providing hospice care to those dying at home during the COVID-19 pandemic. Objective: To describe the challenges of home hospice care and the specific types of disruptions in care processes experienced by patients and families. Design: Qualitative study of the electronic medical record notes of a large New York City (NYC) home-based primary care program. Setting/Subjects: Subjects were 58 patients referred to hospice who died during the initial NYC COVID-19 surge from March to June 2020. Results: We identified six domains of disruptions in home hospice care: delayed hospice enrollment, inability to conduct home visits, lack of needed supplies, communication failures, strained caregivers, and limitations of telehealth. Conclusions: This study provides a critical first analysis of disruptions in home hospice care that can feasibly be addressed and must be prioritized by hospices throughout the ongoing pandemic and in advance of future emergencies. [ABSTRACT FROM AUTHOR]

Background: Health information exchange (HIE) notifications when patients experience cross-system acute care encounters offer an opportunity to provide timely transitions interventions to improve care across systems.Objective: To compare HIE notification followed by a post-hospital care transitions intervention (CTI) with HIE notification alone.Design: Cluster-randomized controlled trial with group assignment by primary care team.Patients: Veterans 65 or older who received primary care at 2 VA facilities who consented to HIE and had a non-VA hospital admission or emergency department visit between 2016 and 2019.Interventions: For all subjects, real-time HIE notification of the non-VA acute care encounter was sent to the VA primary care provider. Subjects assigned to HIE plus CTI received home visits and telephone calls from a VA social worker for 30 days after arrival home, focused on patient activation, medication and condition knowledge, patient-centered record-keeping, and follow-up.Measures: Primary outcome: 90-day hospital admission or readmission.Secondary Outcomes: emergency department visits, timely VA primary care team telephone and in-person follow-up, patients' understanding of their condition(s) and medication(s) using the Care Transitions Measure, and high-risk medication discrepancies.Key Results: A total of 347 non-VA acute care encounters were included and assigned: 159 to HIE plus CTI and 188 to HIE alone. Veterans were 76.9 years old on average, 98.5% male, 67.8% White, 17.1% Black, and 15.1% other (including Hispanic). There was no difference in 90-day hospital admission or readmission between the HIE-plus-CTI and HIE-alone groups (25.8% vs. 20.2%, respectively; risk diff 5.6%; 95% CI - 3.3 to 14.5%, p = .25). There was also no difference in secondary outcomes.Conclusions: A care transitions intervention did not improve outcomes for veterans after a non-VA acute care encounter, as compared with HIE notification alone. Additional research is warranted to identify transitions services across systems that are implementable and could improve outcomes. [ABSTRACT FROM AUTHOR]

Older veterans enrolled in the Veterans Health Administration (VHA) often use both VHA and non-VHA providers for their care. This dual use, especially around an inpatient visit, can lead to fragmented care during the time of transition post-discharge. Interventions that target patient activation may be valuable ways to help veterans manage complex medication regimens and care plans from multiple providers. The Care Transitions Intervention (CTI) is an evidence-based model that helps older adults gain confidence and skills to achieve their health goals post-discharge. Our study examined the impact of CTI upon patient activation for veterans discharged from non-VHA hospitals. In total, 158 interventions were conducted for 87 veterans. From baseline to follow-up there was a significant 1.7-point increase in patient activation scores, from 5.4 to 7.1. This association was only found among those who completed the intervention. The most common barriers to completion were difficulty reaching the veteran by phone, patient declining the intervention, and rehospitalization during the 30 days post-discharge. Care transitions guided by social workers may be a promising way to improve patient activation. However, future research and practice should address barriers to completion and examine the impact of increased patient activation on health outcomes. [ABSTRACT FROM AUTHOR]

While many types of health care workers experience patient death, home care workers do so under vastly different social and economic circumstances. When a client dies, home care workers often lose both a close relationship and a job. Though research suggests that health care workers' grief may frequently be disenfranchised, there is no in-depth study of the mechanisms that disenfranchise home care workers' grief specifically. To address this gap, our study used focus groups and peer interviews between home care workers in New York City. We describe four interrelated grief strategies they employ to navigate social and employer-based "grieving rules." Our findings suggest that home care workers' grief is disenfranchised via employer and societal underestimations of their relationships with clients and their losses when clients die, particularly job loss. Building on our findings, we suggest alterations to agency practices and home care systems to improve support for workers. [ABSTRACT FROM AUTHOR]