Background: The use of forced treatment and care of home-dwelling persons with dementia is a universally important topic. These patients are completely dependent on care from others to continue living at home. Aim: This study aimed to gain insights into formal decisions related to the forced treatment and care of home-dwelling persons with dementia. Design and sample: This is a cross-sectional study, based on formal decisions of forced treatment and care of home-dwelling persons with dementia in Norway between 1 January 2015 and 31 December 2016. Methods: Descriptive statistical analysis. Statistically significant associations suitable for binary logistic regression were presented as odds ratios with 95% confidence intervals. Ethical considerations: Approved by The Regional Committee for Medical and Health Research Ethics, and by the Norwegian Center for Research. Results: We found 108 formal decisions of forced treatment and care of persons with dementia. Decisions of admission represented 57% of the data, other medical and safety decisions 27%, and assistance with activities of daily living 16%. In most cases, physicians were responsible for the decisions (77%), but nurses and family members were often involved. Discussion and conclusion: This study demonstrated a prevalence rate of formally documented decisions of forced treatment and care much lower than findings in previous studies. Poor documentation may constitute a risk for the safety and wellbeing of persons with dementia. Although physicians were usually responsible for the decisions, nurses and family members were often involved in the process. Family participation in forced treatment and care raises ethical dilemmas. More research on the experiences of nurses, persons with dementia and family members with forced treatment and care is needed to aid ethical, legal, and clinically challenging decision-making processes.

Oppgitte interessekonflikter: Se til slutt i artikkelen Bakgrunn. Sykehjemmene har ansvar for at beboerne får hjelp til daglig munn-og tannstell. Artikkelen omhandler en ny metode for systematisert tann-og munnstell i eldreinstitusjon.Materiale og metode. Beboernes orale hygienenivå ble målt før og 15 måneder etter iverksetting av følgende tiltak: Innføring av pleieplan for munnstell i form av individuelle, bildebaserte munnstellkort, distribusjon av adekvate munnstellartikler, kompetanseheving hos personalet og fastsetting av rutiner med egen tannkontakt. Beboernes orale hygienenivå ble kartlagt ved hjelp av Belegg-og slimhinneindeks.Resultater og fortolkning. Kompetanseheving og bedrede rutiner gav en klar bedring av det orale hygienenivået hos 40 av 63 beboere.

Background Adequate care support from home health care nurses is needed to meet the needs of an increasing number of home-dwelling persons with dementia and those who resist care. The decisions nurses make in home health care when encountering resistance from persons with dementia have an extensive impact on the quality of care and access to care. There is little research on what influences nurse’s encounters with resistance to care from home-dwelling persons with dementia. Research aim To get insight into how nurses experience resistance to care from home-dwelling persons with dementia. Methods A qualitative research design using a thematic analysis was conducted following the six steps by Braun and Clarke. Data was gathered from three focus group and three individual interviews, and a total of 18 nurses from home health care participated. The interviews took place over a period of 5 months, from December 2020 to April 2021. Ethical considerations Approved by the Norwegian Centre for Research, reference number 515138 and by the research advisers and home care managers in each section of the municipality. Results Two main themes were identified: 1) Challenged by complex and inadequate care structures and 2) Adapting care according to circumstances. There were three subthemes within the first main theme: lack of systematic collaboration and understanding, insufficient flexibility to care, and the challenge of privacy. In the second main theme, there were three subthemes: avoid forced treatment and care to protect autonomy, gray-areas of coercive care and reduced care. The two main themes seemed to be interdependent, as challenges and changes in organizational structures influenced how nurses could conduct their care practices. Conclusion Our findings indicate that nurses’ responsibility to decide how to conduct care is downplayed when facing resistance. Further, their professional judgement is influenced by contextual factors and characterized by a strong commitment to avoid forced treatment and care. A continuous challenge is to safeguard shared decision-making at the same time as it is balanced against risks of severe health damage in home-dwelling persons with dementia. A fundamental question to ask is whether autonomy does conquer all, even when severe health damage is at stake.

Background: Providing care for a home-dwelling person with dementia who resists care is an ethical and practical complex and challenging task. Faced with a growing number of persons with dementia, the healthcare professional’s understanding of how to best care for and prevent unnecessary use of coercion with persons with dementia is of key importance. Research aim: The aim of this study was to explore the use of trust-building interventions in home-dwelling persons with dementia resisting care, as described by health professionals in documents of decisions of forced treatment and care. Research design: A qualitative thematic document analysis inspired by critical realism was conducted. Participants and research context: Descriptions of trust-building interventions were extracted from 88 documents of forced treatment and care for home-dwelling persons with dementia, receiving home healthcare, in 2015 and 2016. Ethical considerations: Approved by the Regional Committee for Medical and Health Research Ethics, reference number 2017/788, and controlled by the Norwegian Centre for Research Data, reference number 54897. The study adhered to the guidelines of the Declaration of Helsinki. Findings: We found that “balancing safe care with the person’s integrity” was an overarching theme that permeated the descriptions of trust-building interventions in the study. Three main themes were identified when the data were analyzed: safeguarding care, protecting integrity, and optimizing the environment. Discussion and conclusion: Health professionals balanced on a thin line between care and integrity when met with resistance from person with dementia. However, the trust-building interventions used in the most challenging situations did not differ from the interventions used in general in dementia care. Two knowledge gaps were identified: how to perform appropriate assessments of situations of home-dwelling persons with dementia when met with resistance to care, and whether environmental initiatives may also benefit home-dwelling persons with dementia who are not easily cared for.