Standing Up For My Sister.

Integrating family caregivers into the health care team is particularly important for patients with intellectual disabilities.

Family Caregivers of Veterans Experience Clinically Significant Levels of Distress Prepandemic and During Pandemic: Implications for Caregiver Support Services.

BACKGROUND: Of the 26.4 million family caregivers in the United States, nearly 40% report high levels of emotional strain and subjective burden. However, for the 5 million caregivers of Veterans, little is known about the experiences of caregivers of Veterans during the coronavirus disease 2019 (COVID-19) pandemic. OBJECTIVE: The aim was to examine pandemic-related changes of caregiver well-being outcomes. RESEARCH DESIGN, SUBJECTS, AND MEASURES: Using a pre/post design and longitudinal data of individual caregivers captured pre-COVID-19 and during COVID-19, we use multilevel generalized linear mixed models to examine pandemic-related changes to caregiver well-being (n=903). The primary outcome measures include Zarit Subjective Burden, Center for Epidemiologic Studies Short Depression Scale, perceived financial strain, life chaos, and loneliness. RESULTS: During the pandemic, we observe slight improvements for caregivers across well-being measures except for perceived financial strain. Before the pandemic, we observed that caregivers screened positive for clinically significant caregiver burden and probable depression. While we do not observe worsening indicators of caregiver well-being during the COVID-19 pandemic, the average predicted values of indicators of caregiver well-being remain clinically significant for caregiving subjective burden and depression. CONCLUSIONS: These findings illuminate pandemic-related impacts of caregivers receiving support through the Veterans Affairs (VA) pre-COVID and during the COVID-19 pandemic while caring for a population of frail, older care-recipients with a high burden of mental illness and other chronic conditions. Considering the long-term impacts of the pandemic to increase morbidity and the expected increased demand for caregivers in an aging population, these consistently high levels of distress despite receiving support highlight the need for interventions and policy reform to systematically support caregivers more broadly.

U.S. long-term services and supports, Covid-19, & dementia: Impacts and opportunities for policy change

Background The COVID-19 pandemic brings the many historical challenges of the long-term services and supports (LTSS) system in the United States (U.S.) into clear focus. Inequalities across race, ethnicity, and socioeconomic status (SES) as well as an increased burden on family care partners have been amplified by the pandemic. In spite of multiple reform attempts and an increasing population of older adults living with multiple, chronic health conditions including Alzheimer?s disease and other forms of dementia (ADRD), who will need some form of long-term care during their lifetime policy reform has remained elusive. Primary blame for the high rates of COVID-19 infections and deaths have largely been assigned to formal LTSS care settings. Yet, more systemic problems have become clear during the pandemic: the failure of coordination of the U.S. public health system at the federal level and the effects of long-term disinvestment and neglect of state and local level public health programs. Taken together, these failures contributed to an inability to coordinate with the LTSS system and act early to protect residents and staff in the LTSS care settings. Method We analyze several impacts of the COVID-19 pandemic on the U.S. LTSS system and existing policy arrangements. Result Policies U.S. policymakers can implement include uniform public reporting of COVID-19 cases in licensed LTSS settings, identifying and supporting unpaid care partners, increased support for the direct care workforce, increased coordination between public health departments and LTSS agencies and providers, enhancing collaboration and communication across health, LTSS, and public health systems, further reducing barriers to telehealth in LTSS, and providing incentives to care for our most vulnerable populations. The analysis also demonstrates that comprehensive reform is required in order to build the LTSS system that is needed through comprehensive workforce development, universal coverage through comprehensive financing reform, and the creation of an age-friendly public health system. Conclusion The COVID-19 pandemic has exposed the deficits of the U.S. LTSS system and made clear the interdependence of LTSS with public health. Several policy responses to the pandemic would help provide the LTSS system that is needed to care for people living with dementia.

Walking All over COVID-19: The Rapid Development of STRIDE in Your Room, an Innovative Approach to Enhance a Hospital-Based Walking Program during the Pandemic.

Hospitalization is common among older adults. Prolonged time in bed during hospitalization can lead to deconditioning and functional impairments. Our team is currently working with Department of Veterans Affairs (VA) medical centers across the United States to implement STRIDE (assiSTed eaRly mobIlity for hospitalizeD older vEterans), a hospital-based walking program designed to mitigate the risks of immobility during hospitalization. However, the COVID-19 pandemic made in-person, or face-to-face, walking challenging due to social distancing recommendations and infection control concerns. In response, our team applied principles of implementation science, including stakeholder engagement, prototype development and refinement, and rapid dissemination and feedback, to create STRIDE in Your Room (SiYR). Consisting of self-guided exercises, light exercise equipment (e.g., TheraBands, stress ball, foam blocks, pedometer), the SiYR program provided safe alternative activities when face-to-face walking was not available during the pandemic. We describe the methods used in developing the SiYR program; present feedback from participating sites; and share initial implementation experiences, lessons learned, and future directions.

The Metrics Matter: Improving Comparisons of COVID-19 Outbreaks in Nursing Homes.

OBJECTIVES: In the United States, nursing facility residents comprise fewer than 1% of the population but more than 40% of deaths due to Coronavirus Disease 2019 (COVID-19). Mitigating the enormous risk of COVID-19 to nursing home residents requires adequate data. The widely used Centers for Medicare & Medicaid Services (CMS) COVID-19 Nursing Home Dataset contains 2 derived statistics: Total Resident Confirmed COVID-19 Cases per 1000 Residents and Total Resident COVID-19 Deaths per 1000 Residents. These metrics provide a misleading picture, as facilities report cumulative counts of cases and deaths over different time periods but use a point-in-time measure as proxy for number of residents (number of occupied beds in a week), resulting in inflated statistics. We propose an alternative statistic to better illustrate the burden of COVID-19 cases and deaths across nursing facilities. DESIGN: Retrospective cohort study. SETTING AND PARTICIPANTS: Using the CMS Nursing Home Compare and COVID-19 Nursing Home Datasets, we examined facilities with star ratings and COVID-19 data passing quality assurance checks for each reporting period from May 31 to August 16, 2020 (n = 11,115). METHODS: We derived an alternative measure of the number of COVID-19 cases per 1000 residents using the net change in weekly census. For each measure, we compared predicted number of cases/deaths by overall star rating using negative binomial regression with constant dispersion, controlling for county-level cases per capita and nursing home characteristics. RESULTS: The average number of cases per 1000 estimated residents using our method is lower compared with the metric using occupied beds as proxy for number of residents (44.8 compared with 66.6). We find similar results when examining number of COVID-19 deaths per 1000 residents. CONCLUSIONS AND IMPLICATIONS: Future research should estimate the number of residents served in nursing facilities when comparing COVID-19 cases/deaths in nursing facilities. Identifying appropriate metrics for facility-level comparisons is critical to protecting nursing home residents as the pandemic continues.

COVID-19: The Time for Collaboration Between Long-Term Services and Supports, Health Care Systems, and Public Health Is Now.

Policy Points To address systemic problems amplified by COVID-19, we need to restructure US long-term services and supports (LTSS) as they relate to both the health care systems and public health systems. We present both near-term and long-term policy solutions. Seven near-term policy recommendations include requiring the uniform public reporting of COVID-19 cases in all LTSS settings; identifying and supporting unpaid caregivers; bolstering protections for the direct care workforce; increasing coordination between public health departments and LTSS agencies and providers; enhancing collaboration and communication across health, LTSS, and public health systems; further reducing barriers to telehealth in LTSS; and providing incentives to care for vulnerable populations. Long-term reform should focus on comprehensive workforce development, comprehensive LTSS financing reform, and the creation of an age-friendly public health system. CONTEXT: The heavy toll of COVID-19 brings the failings of the long-term services and supports (LTSS) system in the United States into sharp focus. Although these are not new problems, the pandemic has exacerbated and amplified their impact to a point that they are impossible to ignore. The primary blame for the high rates of COVID-19 infections and deaths has been assigned to formal LTSS care settings, specifically nursing homes. Yet other systemic problems have been unearthed during this pandemic: the failure to coordinate the US public health system at the federal level and the effects of long-term disinvestment and neglect of state- and local-level public health programs. Together these failures have contributed to an inability to coordinate with the LTSS system and to act early to protect residents and staff in the LTSS care settings that are hotspots for infection, spread, and serious negative health outcomes. METHODS: We analyze several impacts of the COVID-19 pandemic on the US LTSS system and policy arrangements. The economic toll on state budgets has been multifaceted, and the pandemic has had a direct impact on Medicaid, the primary funder of LTSS, which in turn has further exacerbated the states' fiscal problems. Both the inequalities across race, ethnicity, and socioeconomic status as well as the increased burden on unpaid caregivers are clear. So too is the need to better integrate LTSS with the health, social care, and public health systems. FINDINGS: We propose seven near-term actions that US policymakers could take: implementing a uniform public reporting of COVID-19 cases in LTSS settings; identifying and supporting unpaid caregivers; bolstering support for the direct care workforce; increasing coordination between public health departments and LTSS agencies and providers; enhancing collaboration and communication across health, LTSS, and public health systems; further reducing the barriers to telehealth in LTSS; and providing incentives to care for our most vulnerable populations. Our analysis also demonstrates that our nation requires comprehensive reform to build the LTSS system we need through comprehensive workforce development, universal coverage through comprehensive financing reform, and the creation of an age-friendly public health system. CONCLUSIONS: COVID-19 has exposed the many deficits of the US LTSS system and made clear the interdependence of LTSS with public health. Policymakers have an opportunity to address these failings through a substantive reform of the LTSS system and increased collaboration with public health agencies and leaders. The opportunity for reform is now.

Older Adults Post-Incarceration: Restructuring Long-term Services and Supports in the Time of COVID-19.

OBJECTIVES: To describe long-term care services and supports (LTSS) in the United States, note their limitations in serving older adults post-incarceration, and offer potential solutions, with special consideration for the Coronavirus Disease 2019 pandemic. DESIGN: Narrative review. SETTING AND PARTICIPANTS: LTSS for older adults post-incarceration. METHODS: Literature review and policy analysis. RESULTS: Skilled nursing facilities, nursing homes, assisted living, adult foster homes, and informal care from family and friends compose LTSS for older adults, but their utilization suffers from access and payment complexities, especially for older adults post-incarceration. A combination of public-private partnerships, utilization of health professional trainees, and unique approaches to informal caregiver support, including direct compensation to caregivers, could help older adults reentering our communities following prison. CONCLUSIONS AND IMPLICATIONS: Long-standing gaps in US LTSS are revealed by the coronavirus (severe acute respiratory syndrome coronavirus 2) pandemic. Older adults entering our communities from prison are particularly vulnerable and need unique solutions to aging care as they face stigma and access challenges not typically encountered by the general population. Our review and discussion offer guidance to systems, practitioners, and policy makers on how to improve the care of older adults after incarceration.