Ethical self-efficacy among healthcare professionals caring for people with dementia: a brief pre- and post-report on the CARE intervention.

BACKGROUND: Interventions targeting healthcare professionals' confidence in managing ethical issues in dementia care are limited despite documented positive effects of educational programs on staff knowledge and self-efficacy. However, inconsistencies in the literature regarding the impact of educational programs underscore the need for targeted interventions. The CARE intervention, specifically designed to enhance confidence in ethical decision-making, aims to address this gap. This study evaluates the effectiveness of the CARE intervention in enhancing the ethical self-efficacy of healthcare professionals caring for people with dementia, particularly those with initially low levels of self-efficacy. METHODS: Using a non-experimental pre-post evaluation design, the CARE intervention was administered to healthcare professionals (n = 86), measuring ethical self-efficacy pre-and post-intervention. We hypothesized significant differences in ethical self-efficacy mean scores pre- and post-intervention for all participants, particularly those with low pre-measurement scores, whom we expected to benefit most from the intervention. Statistical analysis included paired t-tests and Wilcoxon tests for the low pre-measurement subgroup analysis. RESULTS: While no significant change was observed in the entire sample, participants with low initial self-efficacy showed a statistically significant improvement post-intervention. CONCLUSIONS: The CARE intervention holds promise in improving ethical self-efficacy among healthcare professionals with initial low confidence levels. Targeted interventions are essential in addressing confidence gaps in managing ethical challenges in dementia care, with implications for professional well-being and quality of care. Further research should explore long-term effects and expand sample size to enhance generalizability and sustainability of findings.

Healthcare Professionals' Perspectives on Dignity in Dementia: A Qualitative Analysis.

In dementia care, the concept of dignity has garnered substantial attention from both researchers and policymakers. However, the concept often remains vague and open to interpretation, potentially leading to misunderstandings and suboptimal care for people with dementia. As healthcare professionals occupy a critical role in upholding dignity, exploring their viewpoints on this complex concept is paramount. In this study, we explore Danish healthcare professionals' views on the dignity of people with dementia and discuss these perspectives against existing theoretical accounts. We employed thematic analysis of data collected during facilitated discussions with a total of 99 healthcare professionals, including nurses and healthcare workers, during which we posed the question, "What is dignity to you?" and documented their perspectives. Through a systematic process of data coding and interpretation, we identified recurring patterns in their responses. This approach allowed us to uncover the depth and complexity of their viewpoints, providing valuable insights into the multifaceted nature of dignity as perceived by healthcare professionals. Our findings revealed that healthcare professionals possessed a nuanced understanding of dignity, recognizing both a subjective element and a universal aspect applicable to all individuals, aligning with theoretical interpretations. However, conceptual ambiguity remained a challenge.

The use of advance directives for autonomy in dementia care: A scoping meta-review and thematic synthesis.

Dementia may reduce individuals' capacity for autonomy and decision-making competence. Advance directives are subject to theoretical bioethical debate as tools to safeguard or extend autonomy in dementia. However, the extent and manner in which advance directives are actually used for these purposes in practice remain less examined. We aimed to examine how advance directives are used as tools for individual autonomy in dementia care. We systematically searched six databases and performed a thematic analysis and synthesis of included reviews based on an original model of six autonomy-relevant dimensions of advance directives. A total of 18 reviews met the inclusion criteria. We identified 12 themes across six dimensions. We found a lack of knowledge integration on the actual use of advance directives for autonomy in dementia care. Evidence suggests significant variation in the autonomy-relevant dimensions of advance directives, with a tendency towards an inconsistent or low level of implementation as a tool for autonomy. Further reviews and primary studies on all aspects of the use of advance directives for autonomy in dementia care would contribute significantly to dementia research and practice.

Development and prima facie validation of the Dementia-Specific Ethical Self-Efficacy scale for professional caregivers.

AIM: To develop and validate a scale for measuring professional caregivers' ethical self-efficacy in dementia care. BACKGROUND: Professional caregivers of people with dementia make ethical decisions on a day-to-day basis, and it is important that they feel confident when doing so. Moreover, confidence, or self-efficacy, influences caregivers' behaviour and well-being and may be a predictor of competence. However, there is no scale for measuring ethical self-efficacy. This study aims to fill this gap. METHODS: This study concerns the development and prima facie validation of the Dementia-Specific Ethical Self-Efficacy (DemESE) scale. During development, we identified dementia-specific ethical principles and generated items representing ethical conflicts of principles. In the subsequent validation, we administered the scale to experts and professional caregivers in dementia care. We assessed the relevance of the scale using a content validity index and tested validity and reliability using Cronbach's alpha. To further enhance validity, we compared the scale with analogous self-efficacy scales using Pearson's correlation coefficient. RESULTS: The quantitative testing of DemESE revealed that the scale exhibited acceptable levels of internal consistency and reliability. This finding was supported by Cronbach's alpha. In addition, the content validity index and Pearson correlation coefficient provided evidence of the scale's relevance and validity. CONCLUSION: The results suggest that DemESE is a promising tool for assessing professional caregivers' ethical self-efficacy in dementia care and may be used to measure ethical self-efficacy - that is, confidence in ethical decision-making in dementia care.

Caregivers' perceptions of lying to people with dementia in Denmark: a qualitative study.

OBJECTIVES: This study aims to examine caregivers' perspectives on and justifications for lying when caring for people with dementia. METHOD: The data consisted of interviews and observations of discussions among family and professional caregivers with various educational backgrounds. Thematic analysis was applied to identify key themes related to caregivers' perspectives on lying. RESULTS: The study revealed that lies were frequently employed by caregivers and were seen as effective tools in the caregivers' toolkit. These practices were often labelled 'white lies' and were rationalised based on their potential to enhance the well-being of people with dementia or to facilitate smooth interactions. The potential negative consequences of lying were also acknowledged. In addition, some caregivers suggested that the practice of 'stepping into the person with dementia's reality' might not constitute lying. CONCLUSION: The findings suggest that the caregivers perceived lying to be a legitimate strategy when caring for people with dementia; surprisingly, some did not recognize their practices as constituting acts of lying at all. This finding carries significant clinical relevance, as the varying perceptions of lying underscore the potential need for a consistent approach to deception. Addressing this complexity can lead to more ethical caregiving practices, ultimately enhancing the quality of care provided to people with dementia.

'We had conversations we wouldn't have had otherwise'-Exploring home-dwelling people with dementia and family members' experiences of deliberating on ethical issues in a literature-based intervention.

AIM: To explore home-dwelling people with dementia and family members' perceptions of the feasibility and acceptability of an intervention using dementia-related literature excerpts to facilitate conversations on ethical issues related to living with dementia. BACKGROUND: Ethical issues in dementia care emerge throughout the illness. In the early stages, they may involve decisions about disclosing the illness to the family, shifting roles and responsibilities, and considerations of transitioning to a nursing home. Addressing ethical issues and providing adequate support to home-dwelling people with dementia and their families are often lacking. DESIGN: An exploratory-descriptive qualitative study. METHODS: We conducted eight interviews with 14 home-dwelling persons with dementia and their family caregivers. Six were dyadic interviews, and two were individual interviews with family caregivers. We analysed the interview data using template analysis. We adhered to the COREQ checklist in reporting this study. RESULTS: Using excerpts from dementia-related literature was a feasible and acceptable way of initiating discussions on ethical issues among home-dwelling persons with dementia and family caregivers. However, engaging the families of newly diagnosed individuals was challenging due to emotional distress. The intervention provided peer support, including identifying with others and sharing experiences. Moreover, participating couples found intimacy and relational attunement through shared reflections. CONCLUSION: Based on the findings, it appears that the participants in this study felt that using excerpts from dementia-related literature to deliberate on ethical issues was feasible and acceptable. Deliberating on ethical issues with peers and family caregivers offers valuable social support and opportunities for strengthening relationships. IMPLICATIONS FOR PATIENT CARE: This study makes an important contribution by providing valuable insights into how ethical issues related to living with dementia can be addressed using related literature and suggests how the intervention can be integrated into existing care initiatives for home-dwelling people with dementia and their families. REPORTING METHOD: We have adhered to relevant EQUATOR guidelines with the COREQ reporting method. PATIENT OR PUBLIC CONTRIBUTION: A healthcare professional working as a so-called dementia coordinator (a title used in the Danish context) was involved in the conduct of this study by being responsible for the recruitment of home-dwelling people with dementia and their family members. Moreover, she had joint responsibility for facilitating the intervention along with the first author.

Developing the CARE intervention to enhance ethical self-efficacy in dementia care through the use of literary texts.

BACKGROUND: Dementia care is essential to promote the well-being of patients but remains a difficult task prone to ethical issues. These issues include questions like whether manipulating a person with dementia is ethically permissible if it promotes her best interest or how to engage with a person who is unwilling to recognize that she has dementia. To help people living with dementia and their carers manage ethical issues in dementia care, we developed the CARE intervention. This is an intervention focused on promoting the ethical self-efficacy of people living with dementia and carers, i.e., their confidence that they can manage ethical issues when they occur. The purpose of this paper is to explain and discuss how we have developed the CARE intervention to promote the ethical self-efficacy of people living with dementia, their family, and professional carers through a specific and, we believe, new use of literary texts. METHODS: The CARE intervention has been developed in two phases: First, we conducted a needs assessment of the occurrence of ethical issues in dementia care and the need for an intervention to support people living with dementia and their carers in managing such issues. Second, in a design phase, we developed the CARE intervention to meet identified needs. RESULTS: To address identified ethical issues in dementia care we designed the CARE intervention as a workshop format where people living with dementia and carers can meet, discuss literary texts, and deliberate on how to solve such issues. The workshop is structured by the following elements: An agenda of ethical issues, a collection of literary cases exemplifying ethical issues, a moderator with an understanding of dementia care, and an overview of the ethical principles relevant to the discussion of ethical issues. >This workshop concept is operationalized in three applications tailored to meet the specific ethical issues of each of the study´s three target groups: people living with dementia and family carers, professional and family carers, and professional carers. CONCLUSION: We conclude the paper by stating that it is possible to develop an intervention that promotes the ethical self-efficacy of people living with dementia and family and professional carers.

Ethical issues in dementia guidelines for people with dementia and informal caregivers in Denmark: A qualitative thematic synthesis.

Numerous dementia-specific guidelines are offered to support people with dementia and their informal caregivers in dealing with dementia. However, the extent to which such guidelines address ethical issues and provide guidance for dealing with the issues has not yet been assessed. This study investigates the extent to which ethical issues are addressedin those guidelines, which ethical themes are considered and whatrecommendations are offered. We analysed Danish collected via onlinesearch engines and manual contact with relevant governmental, municipal and patient organisations from November 2020 to January 2021. To assess the scope of ethical issues in such guidelines, we devised an analytical framework using Beauchamp and Childress's four principles of biomedical ethics and a data-processing method inspired by systematic reviews. We collected a total 653 dementia guidelines and screened them using formal inclusion criteria, such as publication year, target group and public availability. The guidelines that satisfied these criteria were screened for content related to ethical issues and recommendations. The guidelines that addressed ethical issues were then coded in NVivo 12 and analysed using thematic text analysis. In total, 59 guidelines satisfied the formal inclusion criteria. Among these guidelines, 15 addressed ethical issues, which fell into four transversal themes: (1) being open about the disease, (2) accepting help, (3) the line between dignified behaviour and overstepping boundaries and (4) decision-making and autonomy. The ethical issues addressed in Danish dementia-specific guidelines were diverse. However, the addressed issues did not represent a comprehensive spectrum of ethical issues as identified in relevant literature, and only a few guidelines contained substantial ethical content. In conclusion, this study indicates that the need for guidance on ethical issues is not being met by dementia-specific guidelines and that further research is required to provide additional ethical guidance that benefits people with dementia and their informal caregivers.