Implementation of the Dementia Isolation Toolkit in long-term care improves awareness but does not reduce moral distress amongst healthcare providers.

BACKGROUND: Healthcare providers may experience moral distress when they are unable to take the ethically or morally appropriate action due to real or perceived constraints in delivering care, and this psychological stressor can negatively impact their mental health, leading to burnout and compassion fatigue. This study describes healthcare providers experiences of moral distress working in long-term care settings during the COVID-19 pandemic and measures self-reported levels of moral distress pre- and post-implementation of the Dementia Isolation Toolkit (DIT), a person-centred care intervention designed for use by healthcare providers to alleviate moral distress. METHODS: Subjective levels of moral distress amongst providers (e.g., managerial, administrative, and front-line employees) working in three long-term care homes was measured pre- and post-implementation of the DIT using the Moral Distress in Dementia Care Survey and semi-structured interviews. Interviews explored participants' experiences of moral distress in the workplace and the perceived impact of the intervention on moral distress. RESULTS: A total of 23 providers between the three long-term care homes participated. Following implementation of the DIT, subjective levels of moral distress measured by the survey did not change. When interviewed, participants reported frequent experiences of moral distress from implementing public health directives, staff shortages, and professional burnout that remained unchanged following implementation. However, in the post-implementation interviews, participants who used the DIT reported improved self-awareness of moral distress and reductions in the experience of moral distress. Participants related this to feeling that the quality of resident care was improved by integrating principals of person-centered care and information gathered from the DIT. CONCLUSIONS: This study highlights the prevalence and exacerbation of moral distress amongst providers during the pandemic and the myriad of systemic factors that contribute to experiences of moral distress in long-term care settings. We report divergent findings with no quantitative improvement in moral distress post-intervention, but evidence from interviews that the DIT may ease some sources of moral distress and improve the perceived quality of care delivered. This study demonstrates that an intervention to support person-centred isolation care in this setting had limited impact on overall moral distress during the COVID-19 pandemic.

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.

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.

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.

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.

Ecological Momentary Assessment of Depression in People With Advanced Dementia: Longitudinal Pilot Study.

BACKGROUND: Barriers to assessing depression in advanced dementia include the presence of informant and patient recall biases. Ecological momentary assessment provides an improved approach for mood assessment by collecting observations in intervals throughout the day, decreasing recall bias, and increasing ecological validity. OBJECTIVE: This study aims to evaluate the feasibility, reliability, and validity of the modified 4-item Cornell Scale for Depression in Dementia for Momentary Assessment (mCSDD4-MA) tool to assess depression in patients with advanced dementia. METHODS: A intensive longitudinal pilot study design was used. A total of 12 participants with advanced dementia were enrolled from an inpatient psychogeriatric unit. Participants were assessed using clinical depression assessments at admission and discharge. Research staff recorded observations four times a day for 6 weeks on phones with access to the mCSDD4-MA tool. Descriptive data related to feasibility were reported (ie, completion rates). Statistical models were used to examine the interrater reliability and construct and predictive validity of the data. RESULTS: Overall, 1923 observations were completed, representing 55.06% (1923/3496) of all rating opportunities with 2 raters and 66.01% (1923/2913) with at least one rater. Moderate interrater reliability was demonstrated for all items, except for lack of interest. Moderate correlations were observed between observers and patient-reported outcomes, where observers reported fewer symptoms relative to participants' self-reports. Several items were associated with and able to predict depression. CONCLUSIONS: The mCSDD4-MA tool was feasible to use, and most items in the tool showed moderate reliability and validity for assessing depression in dementia. Repeated and real-time depression assessment in advanced dementia holds promise for the identification of clinical depression and depressive symptoms.

Behaviour assessment tools in long-term care homes in Canada: a survey.

OBJECTIVE: Many people living in long-term care homes (LTCH) experience changes in behaviour termed the behavioural and psychological symptoms of dementia (BPSD). The valid and reliable assessment of BPSD is essential to guide treatment and monitor the effect of interventions. The aim of this study was to identify behavioural assessment tools implemented in LTCH and factors that impact on their use in clinical care. METHODS: We completed an online mixed-design survey of 300 randomly selected Canadian LTCH between September and November 2018. Respondents were asked to report tools used, reasons for use, methods of administration, training/supports available, confidence in use and challenges faced. Survey results were summarized descriptively and the correlation between implementation supports and confidence examined. Free-text responses were analysed qualitatively. RESULTS: Of 300 LTCH invited to participate, 103 completed the survey. Homes reported using a mean 2.2 ± 1.1 (range 0-7) different tools. The two most commonly used tools were the Dementia Observation System (DOS) and Cohen-Mansfield Agitation Inventory (CMAI). Overall confidence in most aspects of tool use was reported to be high, with workload identified as the greatest challenge. Training and supports correlated with confidence in tool use. Qualitative findings indicate tools provide valuable data to understand behaviours, facilitate team communication, target interventions and track outcomes. CONCLUSIONS: Behavioural assessment tools, in particular a direct observation tool, are widely used in clinical care in Canadian LTCH. Education, enhanced resources, leadership support and applications of technology represent opportunities to improve their use.

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.

Quality Indicators as Predictors of Future Inspection Performance in Ontario Nursing Homes.

OBJECTIVES: There are several mechanisms for monitoring the quality of care in long-term care (LTC), including the use of quality indicators derived from resident assessments and formal inspections. The LTC inspection process is time and resource-intensive, and there may be opportunities to better target inspections. In this study, we aimed to examine whether quality indicators could predict future inspection performance in LTC homes across Ontario, Canada. SETTING AND PARTICIPANTS: In total, 594 LTC homes across Ontario. METHODS: Using a database compiling detailed inspection reports for the period from 2017 to 2018, we classified each home into 1 of 3 categories (in good standing, needing improvement, needing significant improvement). Machine learning techniques were used to examine whether publicly available Resident Assessment Instrument‒Minimum Data Set quality indicators for the period 2016‒2017 could predict facility classification based on inspection results. RESULTS: After running a wide range of models, only a weak relationship was found between quality indicators and future inspection performance. The best-performing model was able to achieve a classification accuracy of 40.1%. Feature analysis was performed on the final model to identify which quality indicators were most indicative of predicted poor performance. Experiencing worsened pain, restraint use, and worsened pressure ulcers were correlated with homes predicted as needing significant improvement. Counterintuitively, improved physical functioning had an inverse relationship with homes predicted as being in good standing. CONCLUSIONS AND IMPLICATIONS: Most quality indicators are poor predictors of inspection performance. Further work is required to explore the limited relationship between these 2 measures of LTC quality, and to identify other quality measures that may be useful as predictors of facilities facing difficulty in meeting quality standards.