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.

The Canadian Long-Term Care Sector Collapse from COVID-19: Innovations to Support People in the Workforce.

The COVID-19 pandemic rattled Canada's long-term care (LTC) sector by exacerbating the ingrained systemic and structural issues, resulting in tragic consequences for the residents, family members and LTC staff. At the core of LTC's challenges is chronic under-staffing, leading to lower quality of care for residents and higher degrees of moral distress among staff. A rejuvenation of the LTC sector to support its workforce is overdue. A group of diverse and renowned researchers from across Canada set out to implement innovative evidence-informed solutions in various LTC homes. Their findings call for immediate action from policy makers and LTC decision makers.

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.

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.

Psychometric Evaluation and Workflow Integration Study of a Tablet-Based Tool to Detect Mild Cognitive Impairment in Older Adults: Protocol for a Mixed Methods Study.

BACKGROUND: With the rapid aging of the global population, experts anticipate a surge in the prevalence of mild cognitive impairment (MCI) and dementia worldwide. It is argued that developing more sensitive, easy to administer, and valid MCI screening tools for use in primary care settings may initiate timely clinical and personal care planning and treatment, enabling early access to programs and services. Including functional competence measures in screening tests makes them more ecologically valid and may help to identify cognitive deficits at an earlier stage. OBJECTIVE: We aim to conduct a preliminary evaluative study comparing the sensitivity, specificity, and reliability of the BrainFx Screen (referred to as SCREEN hereafter), a novel digital tool designed to assess functional competence and detect early signs of cognitive impairment, with the Quick Mild Cognitive Impairment, a validated and highly sensitive tool that detects MCI in the older adult population. We will also investigate the perceived usefulness and integration of the SCREEN into primary care practice to identify demonstrable impacts on clinical workflow and health care providers' (HCP) perceptions of its success as a screening tool. Patients' perceptions of completing the SCREEN and its impact on their quality of life will also be explored. METHODS: This study has a concurrent, mixed methods, prospective, and quasi-experimental design. Participants will be recruited from 5 primary care family health teams (FHTs; defined by multidisciplinary practice and capitated funding) across southwestern Ontario, Canada. Participants will include HCPs, patients, care partners, and FHT administrative executives. Patients 55 years and older with no history of diagnoses for MCI, dementia, or Alzheimer disease rostered in one of the FHTs participating in the study will be eligible to participate. Their care partners will help triangulate the qualitative data collected from patients. Participating FHTs will identify an occupational therapist from their site to participate in the study; this HCP will both administer the research protocol and participate in semistructured in-depth interviews and questionnaires. Principal component analysis will be conducted on the SCREEN data to understand the test components better. Tests comparing sensitivity, specificity, and test-retest reliability will assess the validity of SCREEN as a screening tool for MCI. RESULTS: This paper describes the study protocol and its activities to date. Data collection was halted early because of COVID-19 restrictions on research activity, and data analysis is currently in progress. CONCLUSIONS: At the end of the project, we anticipate having an initial comparative evaluation of the SCREEN as a tool for early detection of MCI in primary care older adult patient populations. Resource constraints on this research study limit our ability to conduct a randomized controlled trial; however, the results will assist developers of the SCREEN in determining whether rigorous controlled testing is warranted. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/25520.