Prevalence, causes, and consequences of moral distress in healthcare providers caring for people living with dementia in long-term care during a pandemic.

Healthcare providers caring for people living with dementia may experience moral distress when faced with ethically challenging situations, such as the inability to provide care that is consistent with their values. The COVID-19 pandemic produced conditions in long-term care homes (hereafter referred to as 'care homes') that could potentially contribute to moral distress. We conducted an online survey to examine changes in moral distress during the pandemic, its contributing factors and correlates, and its impact on the well-being of care home staff. Survey participants (n = 227) working in care homes across Ontario, Canada were recruited through provincial care home organizations. Using a Bayesian approach, we examined the association between moral distress and staff demographics and roles, and characteristics of the long-term care home. We performed a qualitative analysis of the survey's free-text responses. More than 80% of care home healthcare providers working with people with dementia reported an increase in moral distress since the start of the pandemic. There was no difference in the severity of distress by age, sex, role, or years of experience. The most common factors associated with moral distress were lack of activities and family visits, insufficient staffing and high turnover, and having to follow policies and procedures that were perceived to harm residents with dementia. At least two-thirds of respondents reported feelings of physical exhaustion, sadness/anxiety, frustration, powerlessness, and guilt due to the moral distress experienced during the pandemic. Respondents working in not-for-profit or municipal homes reported less sadness/anxiety and feelings of not wanting to go to work than those in for-profit homes. Front-line staff were more likely to report not wanting to work than those in management or administrative positions. Overall, we found that increases in moral distress during the pandemic negatively affected the well-being of healthcare providers in care homes, with preliminary evidence suggesting that individual and systemic factors may intensify the negative effect.

Pandemic Preparedness and Beyond: Person-Centred Care for Older Adults Living in Long-Term Care during the COVID-19 Pandemic.

The increasing complexity of residents' needs, emphasis on social distancing and limited access to high-quality support presented challenges to patient-centred care during the pandemic. Yet the pandemic created an opportunity to explore novel approaches to achieving person-centred care within long-term care (LTC). We share three projects designed to enhance care delivery in the context of the pandemic: to address personhood needs during outbreaks, to improve the quality of medical care and to deliver personalized palliative and end-of-life care using a prediction algorithm. These projects enabled better care during the pandemic and will continue to advance person-centred care beyond the pandemic.

Home- and community-level predictors of social connection in nursing home residents: A scoping review.

Background and Aims: Social connection is associated with better physical and mental health and is an important aspect of the quality of care for nursing home residents. The primary objective of this scoping review was to answer the question: what nursing home and community characteristics have been tested as predictors of social connection in nursing home residents? The secondary objective was to describe the measures of social connection used in these studies. Methods: We searched MEDLINE(R) ALL (Ovid), CINAHL (EBSCO), APA PsycINFO (Ovid), Scopus, Sociological Abstracts (ProQuest), Embase and Embase Classic (Ovid), Emcare Nursing (Ovid), and AgeLine (EBSCO) for research that quantified associations between nursing home and/or community characteristics and resident social connection. Searches were limited to English-language articles published from database inception to search date (July 2019) and update (January 2021). Results: We found 45 studies that examined small-scale home-like settings (17 studies), facility characteristics (14 studies), staffing characteristics (11 studies), care philosophy (nine studies), and community characteristics (five studies). Eight studies assessed multiple home or community-level exposures. The most frequent measures of social connection were study-specific assessments of social engagement (11 studies), the Index of Social Engagement (eight studies) and Qualidem social relations (six studies), and/or social isolation (five studies) subscales. Ten studies assessed multiple social connection outcomes. Conclusion: Research has assessed small-scale home-like settings, facility characteristics, staffing characteristics, care philosophy, and community characteristics as predictors of social connection in nursing home residents. In these studies, there was no broad consensus on best approach(es) to the measurement of social connection. Further research is needed to build an evidence-base on how modifiable built environment, staffing and care philosophy characteristics-and the interactions between these factors-impact residents' social connection.

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The cover image is based on the Research Article Staff perceptions of the consequences of COVID‐19 on quality of dementia care for residents in Ontario long‐term care homes by Julia Kirkham et al., https://doi.org/10.1002/gps.5725. [ FROM AUTHOR] Copyright of International Journal of Geriatric Psychiatry is the property of John Wiley & Sons, Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full . (Copyright applies to all s.)

Acceptability of the voice your values, an advance care planning intervention in persons living with mild dementia using videoconferencing technology.

Advance care planning (ACP) can improve outcomes for persons living with dementia (PLwD). Clinicians see the lack of acceptability of these conversations as a barrier to ACP in individuals with mild dementia. COVID-19 pandemic has magnified the need for ACP discussions in older adults, particularly for those living with dementia. In light of the pandemic, much of the healthcare is provided virtually, but little evidence exists on how to best implement ACP virtually. We designed Voice Your Values (VYV), a tailored ACP intervention for persons living with mild dementia and their trusted individuals such as friends or family. Purpose Determine the acceptability of the VYV intervention, in terms of its content and the potential utility of videoconferencing to deliver it. Methods For this pilot study, we recruited 21 dyads of older adults with mild dementia and their trusted individuals from five geriatric clinics in Ontario, Canada. The tailored VYV intervention was delivered to dyads over two sessions over videoconferencing. Acceptability was assessed using scores on a modified Treatment Evaluation Inventory. The interventionist diary and Researcher Virtual Experience Questionnaire were used to examine facilitators and barriers, whereas Participant Virtual Experience Questionnaire was used to understand their experience. Qualitative data was analyzed using inductive content analysis. Results 100% of the participants rated VYV as acceptable. Participants and researcher rated video and sound quality highly. PLwD who lived with their trusted individuals were more likely to find the intervention acceptable (t = 3.559, p = 0.001, ß = 0.323). Five interrelated themes were established that describe the acceptability of the virtually delivered VYV intervention. All PLwD were able to articulate their values and wishes related to being in a terminal and vegetative states and had them documented. Conclusion The virtual VYV intervention was an acceptable approach to ACP in older adults with mild dementia and their trusted individuals.

Staff perceptions of the consequences of COVID-19 on quality of dementia care for residents in Ontario long-term care homes.

OBJECTIVES: The first wave of the COVID-19 pandemic necessitated extensive infection control measures in long-term care (LTC) and had a significant impact on staffing and services. Anecdotal reports indicate that this negatively affected LTC residents' quality of care and wellbeing, but there is scarce evidence on the effects of COVID-19 on quality of dementia care in LTC. METHODS: From December 2020 to March 2021, we conducted a cross-sectional online survey among staff who worked in LTC homes in Ontario, Canada. Survey questions examined staffs' perceptions of the impact of COVID-19 on dementia quality of care during the initial wave of the COVID-19 pandemic (beginning 1 March 2020). RESULTS: There were a total of 227 survey respondents; more than half reported both worsened overall quality of care (51.3%) and worsening of a majority of specific quality of care measures (55.5%). Measures of cognitive functioning, mobility and behavioural symptoms were most frequently described as worsened. Medical and allied/support staff had the highest odds of reporting overall worsened quality of care, while specialized behavioural care staff and those with more experience in LTC were less likely to. LTC home factors including rural location and smaller size, staffing challenges, higher number of outbreaks and less COVID-19 preparedness were associated with increased odds of perceived worsening of quality of dementia care outcomes. CONCLUSIONS: These findings suggest that COVID-19 pandemic restrictions and related effects such as inadequate staffing may have contributed to poor quality of care and outcomes for those with dementia in LTC.

Greater Opioid Use Among Nursing Home Residents in Ontario, Canada During the First 2 Waves of the COVID-19 Pandemic.

OBJECTIVES: To examine the association between the COVID-19 pandemic and opioid use among nursing home residents followed up to March 2021, and possible variation by dementia and frailty status. DESIGN: Population-based cohort study with an interrupted time series analysis. SETTING AND PARTICIPANTS: Linked health administrative databases for residents of all nursing homes (n = 630) in Ontario, Canada were examined. Residents were divided into consecutive weekly cohorts (first observation week was March 5 to 11, 2017 and last was March 21 to March 27, 2021). METHODS: The weekly proportion of residents dispensed an opioid was examined overall and by strata defined by the presence of dementia and frailty. Autoregressive Integrated Moving Average models with step and ramp intervention functions tested for immediate level and slope changes in weekly opioid use after the onset of the pandemic (March 1, 2020) and were fit on prepandemic data for projected trends. RESULTS: The average weekly cohort ranged from 76,834 residents (prepandemic) to 69,359 (pandemic period), with a consistent distribution by sex (69% female) and age (54% age 85 + years). There was a statistically significant increased slope change in the weekly proportion of residents dispensed opioids (parameter estimate (ß) = 0.035; standard error (SE) = 0.005, P < .001). Although significant for all 4 strata, the increased slope change was more pronounced among nonfrail residents (ß = 0.038; SE = 0.008, P < .001) and those without dementia (ß = 0.044; SE = 0.008, P < .001). The absolute difference in observed vs predicted opioid use in the last week of the pandemic period ranged from 1.25% (frail residents) to 2.28% (residents without dementia). CONCLUSIONS AND IMPLICATIONS: Among Ontario nursing home residents, there was a statistically significant increase in opioid dispensations following the onset of the pandemic that persisted up to 1 year later. Investigations of the reasons for increased use, potential for long-term use and associated health consequences for residents are warranted.

Barriers and facilitators to person-centred infection prevention and control: results of a survey about the Dementia Isolation Toolkit

Background People working in long-term care homes (LTCH) face difficult decisions balancing the risk of infection spread with the hardship imposed on residents by infection control and prevention (ICP) measures. The Dementia Isolation Toolkit (DIT) was developed to address the gap in ethical guidance on how to safely and effectively isolate people living with dementia while supporting their personhood. In this observational study, we report the results of a survey of LTCH staff on barriers and facilitators regarding isolating residents, and the impact of the DIT on staff moral distress. Methods We completed an online cross-sectional survey. Participants (n = 207) were staff working on-site in LTCH in Ontario, Canada since March 1, 2020, with direct or indirect experience with the isolation of residents. LTCH staff were recruited through provincial LTCH organizations, social media, and the DIT website. Survey results were summarized, and three groups compared, those: (1) unfamiliar with, (2) familiar with, and (3) users of the DIT. Results 61% of respondents identified distress of LTCH staff about the harmful effects of isolation on residents as a major barrier to effective isolation. Facilitators for isolation included delivery of 1:1 activity in the resident’s room (81%) and designating essential caregivers to provide support (67%). Almost all respondents (84%) reported an increase in moral distress. DIT users were less likely to report an impact of moral distress on job satisfaction (odds ratio (OR) 0.41, 95% CI 0.19-0.87) with 48% of users reporting the DIT was helpful in reducing their level of moral distress. Conclusions Isolation as an ICP measure in LTCH environments creates moral distress among staff which is a barrier to its effectiveness. ICP guidance to LTCH would be strengthened by the inclusion of a dementia-specific ethical framework that addresses how to minimize the harms of isolation on both residents and staff. Supplementary Information The online version contains supplementary material available at 10.1186/s12877-022-02759-4.

Trends in Health Service Use for Canadian Adults With Dementia and Parkinson Disease During the First Wave of the COVID-19 Pandemic.

Importance: Persons with dementia and Parkinson disease (PD) are vulnerable to disruptions in health care and services. Objective: To examine changes in health service use among community-dwelling persons with dementia, persons with PD, and older adults without neurodegenerative disease during the first wave of the COVID-19 pandemic. Design Setting and Participants: Repeated cross-sectional analysis using population-based administrative data among community-dwelling persons with dementia, persons with PD, and adults 65 years and older at the start of each week from March 1 through the week of September 20, 2020 (pandemic period), and March 3 through the week of September 22, 2019 (historical period), in Ontario, Canada. Exposures: COVID-19 pandemic as of March 1, 2020. Main Outcomes and Measures: Main outcomes were weekly rates of emergency department visits, hospitalizations, nursing home admissions, home care, virtual and in-person physician visits, and all-cause mortality. Poisson regression models were used to calculate weekly rate ratios (RRs) with 95% CIs comparing pandemic weeks with historical levels. Results: Among those living in the community as of March 1, 2020, persons with dementia (n = 131 466; mean [SD] age, 80.1 [10.1] years) were older than persons with PD (n = 30 606; 73.7 [10.2] years) and older adults (n = 2 363 742; 74.0 [7.1] years). While all services experienced declines, the largest drops occurred in nursing home admissions (RR for dementia: 0.10; 95% CI, 0.07-0.15; RR for PD: 0.03; 95% CI, 0.00-0.21; RR for older adults: 0.11; 95% CI, 0.06-0.18) and emergency department visits (RR for dementia: 0.45; 95% CI, 0.41-0.48; RR for PD: 0.40; 95% CI, 0.34-0.48; RR for older adults: 0.45; 95% CI, 0.44-0.47). After the first wave, most services returned to historical levels except physician visits, which remained elevated (RR for dementia: 1.07; 95% CI, 1.05-1.09; RR for PD: 1.10, 95% CI, 1.06-1.13) and shifted toward virtual visits. Older adults continued to experience lower hospitalizations. All-cause mortality was elevated across cohorts. Conclusions and Relevance: In this population-based repeated cross-sectional study in Ontario, Canada, those with dementia, those with PD, and older adults sought hospital care far less than usual, were not admitted to nursing homes, and experienced excess mortality during the first wave of the pandemic. Most services returned to historical levels, but virtual physician visits remained a feature of care. While issues of equity and quality of care are still emerging among persons with neurodegenerative diseases, policies to support virtual care are necessary.

Development and dissemination of an ethical guidance and person-centred isolation care planning tool to support the care of people with dementia during the COVID-19 pandemic.

BACKGROUND: Long-term care (LTC) residents have been disproportionately impacted by the COVID-19 pandemic, both from the virus itself and the restrictions in effect for infection prevention and control. Many barriers exist in LTC to prevent the effective isolation of suspect or confirmed COVID-19 cases. Furthermore, these measures have a severe impact on the well-being of LTC residents. Our aim was to develop a guide for long-term care to address the ethical challenges associated with isolating dementia patients during the pandemic. The Dementia Isolation Toolkit (DIT) was developed by members of the research team in partnership with LTC stakeholders to address: 1) the practical challenges of isolating or quarantining people with dementia in a compassionate, safe, and effective manner; and 2) the need for ethical guidance to support decision-making regarding isolation and infection control in LTC, to prevent indecision and moral distress. To develop the DIT the team reviewed and synthesized the literature on pandemic ethics in a plain-language document, which was then reviewed by our partners and stakeholders. The final ethical guidance tool includes a discussion of the ethics around infection control measures in a pandemic, an ethical decision-making tool, and a person-centred isolation care planning tool. The ethical guidance tool has been downloaded more than 6500 times since it was published (bit.ly/dementiatoolkit), and has been disseminated internationally. The worksheets are being used during outbreaks to support care and decision-making, as well as proactively, to prepare for outbreaks by developing isolation care plans. There is a need for support for ethical decision-making in the context of a pandemic, particularly in settings such as LTC. Future studies will evaluate the implementation of the tool and its impact in addressing moral distress in health care providers in long-term care.

The impact of the first wave of the COVID-19 pandemic on health service use by persons with dementia in Ontario, Canada: A population-based time series analysis

Background Little has been quantified, at a population-level, about the magnitude of heath service disruption to persons living with dementia in community settings during the COVID-19 pandemic. Sustained access to health care services is particularly important for persons with dementia and other neurodegenerative diseases as they are vulnerable to decline. Method Health administrative data from Ontario, Canada were used to examine patterns of health service use among all persons with Alzheimer disease and related dementias (dementia) who were alive and living in the community. This cohort was compared to persons with Parkinson?s disease (PD) as well as all older adults (age 65+ years) without neurodegenerative diseases. Rates of all-cause hospital admissions, emergency department visits, primary care and specialist physician visits and home care visits were analyzed for all individuals alive and eligible for provincial health insurance at the start of each weekly period from March 1, 2020 to September 20, 2020 (pandemic period) and from March 3, 2019 to September 22, 2019 (pre-pandemic period). Rates of health service use during specific weeks in the pandemic period (i.e., lowest week, last available week) were compared to corresponding weeks in the pre-pandemic period within each cohort using percent changes. Results On March 1, 2020, 128,696 persons with dementia, 30,099 with PD and 2,460,358 older adults were eligible for provincial health services. Across cohorts and services, dramatic declines in use of health services were observed at the lowest week: hospitalization (-38.7% dementia, -72.3% PD, -44.2% older adults);emergency department (-54.9% dementia, -57.7% PD, -53.6% older adults);home care (-14.8% dementia, -19.4% PD, -7.4% older adults). Health services varied in how quickly they rebounded to pre-pandemic levels within cohorts;notably, by the end of the study period, emergency department visits had increased to a level higher than corresponding 2019 weekly rates (24.2% dementia, 15.2% PD, 7.4% older adults). Conclusions The first wave of the COVID-19 pandemic meaningfully and immediately disrupted use of health care services for persons living with dementia and PD and may have resulted in long-term consequences that should be monitored.

Person-centred infection prevention and control during a pandemic: The Dementia Isolation Toolkit

Objectives:People working in long-term care homes (LTCH) face ethical dilemmas about how to minimize the risk of spread of COVID-19, while also minimizing psychological hardship and other harms of infection control measures on residents. The Dementia Isolation Toolkit (www.dementiaisolationtoolkit.com;DIT) was developed to address the gap in ethical guidance for LTCH on how to safely and effectively isolate people with dementia while supporting the personhood and well-being of residents. In this presentation, we will present the DIT and report on the results of a survey of LTCH staff in Ontario, Canada on their experiences isolating residents in LTCH and the use of the DIT in supporting person-centred isolation care.Methods:A link to an online survey was distributed to LTCH staff through provincial organizations and agencies as well as through social media and the DIT website. Inclusion criteria were LTCH staff working on-site at a LTCH since March 1, 2020, who had direct or indirect experience with the isolation/quarantine of LTCH residents. Results were summarized descriptively.Results:A broad sample of LTCH staff (n=207) participated in the survey, most of whom had experienced an outbreak in their LTCH. Dementia (96%) was the most important barrier to implementation of infection control measures in LTCH, followed by staff distress about the effects of isolation on residents (61%). Important facilitators for isolation included delivery of 1:1 activities in the resident’s room (81%) and designating essential caregivers to provide support (67%), while inadequate staffing levels were reported as a barrier (55%). 65% of respondents indicated some familiarity with the DIT, and of those who had used the toolkit, 62% found it helpful in supporting isolation care, particularly in developing care plans and making and communicating decisions. Of those who had used the DIT, 48% found it fairly or very helpful at reducing their level of distress.Conclusions:Isolation as an infection control and prevention (ICP) measure in LTCH environments can be harmful to residents and create moral distress in staff. ICP guidance and support of LTCH needs to address how to minimize these harms by providing dementia-specific guidance such as in the DIT.

Nurse Practitioners Rising to the Challenge During the Coronavirus Disease 2019 Pandemic in Long-Term Care Homes.

BACKGROUND AND OBJECTIVES: There is an urgency to respond to the longstanding deficiencies in health human resources in the long-term care (LTC) home sector, which have been laid bare by the coronavirus disease 2019 (COVID-19) pandemic. Nurse practitioners (NPs) represent an efficient solution to human resource challenges. During the current pandemic, many Medical Directors in LTC homes worked virtually to reduce the risk of transmission. In contrast, NPs were present for in-person care. This study aims to understand the NPs' roles in optimizing resident care and supporting LTC staff during the pandemic. RESEARCH DESIGN AND METHODS: This exploratory qualitative study employed a phenomenological approach. A purposive sample of 14 NPs working in LTC homes in Ontario, Canada, was recruited. Data were generated using semistructured interviews and examined using thematic analysis. RESULTS: Four categories relating to the NPs' practices and experiences during the pandemic were identified: (a) containing the spread of COVID-19, (b) stepping in where needed, (c) supporting staff and families, and (d) establishing links between fragmented systems of care by acting as a liaison. DISCUSSION AND IMPLICATIONS: The findings suggest that innovative models of care that include NPs in LTC homes are required moving forward. NPs embraced a multitude of roles in LTC homes, but the need to mitigate the spread of COVID-19 was central to how they prioritized their days. The pandemic clearly accentuated that NPs have a unique scope of practice, which positions them well to act as leaders and build capacity in LTC homes.

Social Connection in Long-Term Care Homes: A Scoping Review of Published Research on the Mental Health Impacts and Potential Strategies During COVID-19.

OBJECTIVES: Good social connection is associated with better health and wellbeing. However, social connection has distinct considerations for people living in long-term care (LTC) homes. The objective of this scoping review was to summarize research literature linking social connection to mental health outcomes, specifically among LTC residents, as well as research to identify strategies to help build and maintain social connection in this population during COVID-19. DESIGN: Scoping review. SETTINGS AND PARTICIPANTS: Residents of LTC homes, care homes, and nursing homes. METHODS: We searched MEDLINE(R) ALL (Ovid), CINAHL (EBSCO), PsycINFO (Ovid), Scopus, Sociological Abstracts (ProQuest), Embase and Embase Classic (Ovid), Emcare Nursing (Ovid), and AgeLine (EBSCO) for research that quantified an aspect of social connection among LTC residents; we limited searches to English-language articles published from database inception to search date (July 2019). For the current analysis, we included studies that reported (1) the association between social connection and a mental health outcome, (2) the association between a modifiable risk factor and social connection, or (3) intervention studies with social connection as an outcome. From studies in (2) and (3), we identified strategies that could be implemented and adapted by LTC residents, families and staff during COVID-19 and included the articles that informed these strategies. RESULTS: We included 133 studies in our review. We found 61 studies that tested the association between social connection and a mental health outcome. We highlighted 12 strategies, informed by 72 observational and intervention studies, that might help LTC residents, families, and staff build and maintain social connection for LTC residents. CONCLUSIONS AND IMPLICATIONS: Published research conducted among LTC residents has linked good social connection to better mental health outcomes. Observational and intervention studies provide some evidence on approaches to address social connection in this population. Although further research is needed, it does not obviate the need to act given the sudden and severe impact of COVID-19 on social connection in LTC residents.

Achieving Safe, Effective and Compassionate Quarantine or Isolation of Older Adults with Dementia in Nursing Homes

Nursing homes are facing the rapid spread of COVID-19 among residents and staff and are at the centre of the public health emergency due to the COVID-19 pandemic. As policy changes and interventions designed to support nursing homes are put into place, there are barriers to implementing a fundamental, highly effective element of infection control, namely the isolation of suspected or confirmed cases. Many nursing home residents have dementia, associated with impairments in memory, language, insight and judgment that impact their ability to understand and appreciate the necessity of isolation and to voluntarily comply with isolation procedures. While there is a clear ethical and legal basis for the involuntary confinement of people with dementia, the potential for unintended harm with these interventions is high, and there is little guidance for nursing homes on how to isolate safely, while maintaining the human dignity and personhood of the individual with dementia. In this commentary, we discuss strategies for effective, safe and compassionate isolation care planning, and present a case vignette of a person with dementia who is placed in quarantine on a dementia unit.