The implementation of care robotics in care settings is identified by some authors as a disruptive innovation, in the sense that it will upend the praxis of care. It is an open ethical question whether this alleged disruption will also have a transformative impact on established ethical concepts and principles. One prevalent worry is that the implementation of care robots will turn deception into a routine component of elderly care, at least to the extent that these robots will function as (...) simulacra for something that they are not (i.e. human caregivers). At face value, this may indeed seem to indicate a concern for how this technology may upend existing practices and relationships within a care setting. Yet, on closer inspection, this reaction may rather point to a rediscovery and a revaluation of a particularly well-entrenched value or virtue, i.e. veracity. The virtue of veracity is one of the values that is mobilized to argue against a substitution of human caregivers (while a combination of care robots and human caregivers is much more accepted). The subject of this paper is to explore how the moral panic surrounding care robots should not so much be interpreted as an anticipated and probable disruptor in a care setting, but rather as a sensitizing – in a way conservationist – argument that identifies veracity as an established value that is supposed to be protected and advanced in present day and future care settings. (shrink)

IntroductionDementia diseases, especially Alzheimer’s disease (AD), are of considerable importance in terms of social policy and health economics. Moreover, against the background of the current Karlsruhe judgement on the legalisation of assisted suicide, there are also questions to be asked about medical humanities in AD.MethodologyRelevant literature on complementary forms of therapy and prognosis was included and discussed.ResultsCreative sociotherapeutic approaches (art, music, dance) and validating psychotherapeutic approaches show promise for suitability and efficiency in the treatment of dementia, but in some cases (...) still need to be scientifically tested. Biomarker-based early diagnosis of dementia diseases is increasingly becoming a subject of debate against the background of the Karlsruhe ruling.DiscussionNeeds-oriented and resource-enhancing approaches can make a significant contribution to improving the quality of life of people with dementia. The discussion on the issue of “assisted suicide” should include questions of the dignity and value of a life with dementia.OutlookThe integrative dementia therapy model can be complemented by a religion- and spirituality-based approach. Appropriate forms of psychotherapy should be scientifically evaluated. (shrink)

Care workers and families often engage in deception in everyday interactions with people affected by dementia. While benevolent deception can be justified, there are often more respectful and less risky ways to help people with dementia seeking to make sense of their lives.

Background Advances in artificial intelligence, robotics and wearable computing are creating novel technological opportunities for mitigating the global burden of population ageing and improving the quality of care for older adults with dementia and/or age-related disability. Intelligent assistive technology is the umbrella term defining this ever-evolving spectrum of intelligent applications for the older and disabled population. However, the implementation of IATs has been observed to be sub-optimal due to a number of barriers in the translation of novel applications from the (...) designing labs to the bedside. Furthermore, since these technologies are designed to be used by vulnerable individuals with age- and multi-morbidity-related frailty and cognitive disability, they are perceived to raise important ethical challenges, especially when they involve machine intelligence, collect sensitive data or operate in close proximity to the human body. Thus, the goal of this paper is to explore and assess the ethical issues that professional stakeholders perceive in the development and use of IATs in elderly and dementia care. Methods We conducted a multi-site study involving semi-structured qualitative interviews with researchers and health professionals. We analyzed the interview data using a descriptive thematic analysis to inductively explore relevant ethical challenges. Results Our findings indicate that professional stakeholders find issues of patient autonomy and informed consent, quality of data management, distributive justice and human contact as ethical priorities. Divergences emerged in relation to how these ethical issues are interpreted, how conflicts between different ethical principles are resolved and what solutions should be implemented to overcome current challenges. Conclusions Our findings indicate a general agreement among professional stakeholders on the ethical promises and challenges raised by the use of IATs among older and disabled users. Yet, notable divergences persist regarding how these ethical challenges can be overcome and what strategies should be implemented for the safe and effective implementation of IATs. These findings provide technology developers with useful information about unmet ethical needs. Study results may guide policy makers with firsthand information from relevant stakeholders about possible solutions for ethically-aligned technology governance. (shrink)

The use of doll therapy for people with dementia has been emerging in recent years. Providing a doll to someone with dementia has been associated with a number of benefits which include a reduction in episodes of distress, an increase in general well-being, improved dietary intake and higher levels of engagement with others. It could be argued that doll therapy fulfils the concepts of beneficence (facilitates the promotion of well-being) and respect for autonomy (the person with dementia can exercise their (...) right to engage with dolls if they wish). However, some may believe that doll therapy is inappropriate when applied to the concepts of dignity (people with dementia are encouraged to interact with dolls) and non-maleficence (potential distress this therapy could cause for family members). The absence of rigorous empirical evidence and legislative guidelines render this a therapy that must be approached cautiously owing to the varied subjective interpretations of Kitwood’s ‘malignant social psychology’ and bioethics. This article suggests that by applying a ‘rights-based approach’, healthcare professionals might be better empowered to resolve any ethical tensions they may have when using doll therapy for people with dementia. In this perspective, the internationally agreed upon principles of the United Nations Convention on the Rights of Persons with Disabilities provide a legal framework that considers the person with dementia as a ‘rights holder’ and places them at the centre of any ethical dilemma. In addition, those with responsibility towards caring for people with dementia have their capacity built to respect, protect and fulfil dementia patient’s rights and needs. (shrink)

Deep Brain Stimulation (DBS) is a treatment involving the implantation of electrodes into the brain. Presently, it is used for neurological disorders like Parkinson’s disease, but indications are expanding to psychiatric disorders such as depression, addiction and Obsessive Compulsive Disorder (OCD). Theoretically, it may be possible to use DBS for the enhancement of various mental functions. This article discusses a case of an OCD patient who felt very happy with the DBS treatment, even though her symptoms were not reduced. First, (...) it is explored if the argument that ‘doctors are not in the business of trading happiness’, as used by her psychiatrist to justify his discontinuation of the DBS treatment, holds. The relationship between enhancement and the goals of medicine is discussed and it is concluded that even though the goals of medicine do not set strict limits and may even include certain types of enhancement, there are some good reasons for limiting the kind of things doctors are required or allowed to do. Next, the case is discussed from the perspective of beneficence and autonomy. It is argued that making people feel good is not the same as enhancing their well-being and that it is unlikely—though not absolutely impossible—that the well-being of the happy OCD patient is really improved. Finally, some concerns regarding the autonomy of a request made under the influence of DBS treatment are considered. (shrink)

Deception in research is contentious, as ethical codes stress informed consent, yet complete disclosure may jeopardise validity. Indian Council for Medical Research (ICMR) guidelines classify deception into active, incomplete, and authorised forms. This study explores the ethical justification for incomplete (partial disclosure), permissible instances, and the dilemma faced by ethics committees in balancing scientific rigour and participant protection. The qualitative, non-experimental cross-sectional research, using in-depth interviews, identifies themes through thematic analysis. Findings reveal challenges for ethics committees, as incomplete information hampers (...) understanding, amongst others. The paper proposes an ethics committee framework, urging researchers to minimise or avoid partial deception and recommending institutional awareness campaigns and standard operating procedures for minimal-harm studies using partial disclosure. Therefore, it proposes that partial disclosure should be justified by the 3Vs—value, validity, and veracity to preserve research integrity. (shrink)

All effective communication is based on the participants trusting that they share their basic orientations to the world – that is, they have a common ground. In this paper, however, we examine situations in which such trust is lacking. Drawing on conversation–analytic methodology and on 30 hours of video data featuring persons with dementia and their caregivers in a Swedish-language daycare center in Finland, we consider some of the social consequences resulting from a lack of trust. Our analysis focused on (...) three different interactional contexts, highlighting the relevance of different facets of the participants’ common ground. These facets are anchored in the deontic, epistemic, and emotional orders, respectively. We show that, with regard to each order, a lack of trust in the existence of common ground has drastic consequences, leading to problems related to getting one’s will acknowledged, a scarcity of conversational partners, and a lack of resources to maintain affection. (shrink)

Through the vehicle of Nicolas Sarkozy’s so-called “Dakar Address” we will analyse the West’s persisting lack of insight into the need for a Western decolonization. We will try to identify the dangers that come from this refusal, such as the abidance in colonial patterns, the enduring self-understanding as superior com-pared to Africa, and the persisting unwillingness to accept the colonial guilt. Decolonization has to be understood as a two-fold business. Decolonization is over-coming endured and perpetrated violence. It is not only (...) important that the colonial oppressed regain strength, it is equally important that the perpetrator of colonial violence understand their excess of violence and work on effecting its return impossible. We explain how Western thinking remains dangerous and untrustwor-thy if it refuses its own decolonization. Finally, we will draw attention to a fundamental pattern of Western thought that clashes with the fundamental values of the West: contempt. In a final step we suggest how this contempt can be overcome through desuperiorisation and the establishment of elative ethics. (shrink)

Background Challenging false beliefs are common situations among people living with dementia. They frequently imply time-shifts, that is, situations in which the person re-lives past experiences. Since they have emotional implications and important ethical implications, they are difficult to manage by caregivers, who are faced with the decision of telling or not telling the truth. Aims The study aimed to explore professional staff’s perceptions of common and best practices to manage a situation in which a person living with dementia is (...) having a false belief, specifically a time-shift. The study compares technical staff’s and assistant carers’ responses. Participants and research context Forty-two staff members working in four Spanish long-term care facilities were interviewed. 21 were assistant carers and 21 were technical staff. Research design This study involved a qualitative design, content-analyzing participant’s responses to semi-structured interviews. Participants read a vignette about a person living with dementia having a time-shift and were asked (1) how a situation like that is commonly managed and (2) how it should be managed. Ethical considerations The principles of informed consent, confidentiality, and assessment of consequences for participants were observed throughout the entire study, which was approved by the University of Barcelona Ethics Committee (IRB 00003099). Written participant’s consent was obtained prior to interviews. Findings All the participants mentioned having experienced a situation similar to that described in the vignette. In the case of common practices, lying was the most frequently mentioned strategy. As for best practices, lying and telling the truth were mentioned as well as responses that lie in-between, such as distracting or relaxing. However, most assistant carers reported that they do not know how a challenging false belief should be managed. Conclusion Our findings stress the importance of organizational guidelines and staff development in the management of challenging false beliefs (and specifically time-shifts) in PLWD. (shrink)

From a clinical ethics perspective, I explore several traditional arguments that deem deception as morally unacceptable. For example, it is often argued that deception robs people of their autonomy. Deception also unfairly manipulates others and is a breach of important trust-relations. In these kinds of cases, I argue that the same reasons commonly used against deception can provide strong reasons why deception can be extremely beneficial for patients who lack mental capacity. For example, deception can enhance, rather than impair, autonomy (...) in certain cases. I argue that deception ought to only be used after considering several key morally relevant factors and provide a practical and morally justifiable framework for exploring these issues. (shrink)

Clowns seem suspect when it comes to respect. The combination of clowning and people with dementia may seem especially suspicious. In this argument, I take potential concerns about clowning in dementia care as an opportunity to explore the meaning of a respectful approach of people with dementia. Our word ‘respect’ is derived from the Latin respiciō, meaning ‘looking back’ or ‘seeing again’, as well as ‘looking after’ or ‘having regard’ for someone or something. I build upon this double meaning of (...) respiciō by examining how simultaneously we look to and after people with dementia. I do so empirically by studying how miMakkus clowns in their practice learn to look with new eyes to people and things around them. I call this clown’s view and differentiate it from the predominant way of observing people in dementia care. I argue that respiciō comes in two guises, each of which merges specific forms of looking to and looking after the other. By making conventional, solidified ways of seeing the other fluid again, clowns remind us of the value that comes with a veiled way of paying respect to people with dementia. (shrink)

Deception is common in dementia care, although its moral legitimacy is questionable. This paper conceptually clarifies when does dementia care involve deception and argues that care ethics is an appropriate ethical framework to guide dementia care compared with the mainstream ethical theories that emphasize abilities. From a perspective of care ethics, this paper claims that morally defensible deception is context-specific, embodied as a caring process that needs to be identified through instant, creative and interactive care procedures. According to this argument, (...) it further analyses and concludes the moral rationality of deception in five common cases. While deception is morally justified in many situations, another concern is that it is usually not the last resort but a means of convenience. As the ability to interact, autonomy and dignity of persons with dementia (PWDs) are generally ignored; nurses need more training and education to master the essential procedures to ensure that the value of authenticity and autonomy is maintained and considered throughout dementia care. (shrink)

Background: Using lies, in dementia care, reveals a common practice far beyond the diagnosis and prognosis, extending to the entire care process. Objectives: In this article, we report results about the attitude and the behaviour of nurses towards the use of lies to patients with dementia. Research design: An epidemiological cross-sectional study was conducted between September 2016 and February 2017 in 12 elderly residential facilities and in the geriatric, psychiatric and neurological wards of six specialised hospitals of Italy’s Campania Region. (...) Participants: In all, 106 nurses compiled an attitude questionnaire (A) where the main question was ‘Do you think it is ethically acceptable to use lies to patients with dementia?’, instead 106 nurses compiled a behaviour questionnaire (B), where the main question was ‘Have you ever used lies to patients with dementia?’ Ethical considerations: Using lies in dementia care, although topic ethically still controversial, reveals a common practice far beyond the diagnosis and prognosis, extending to the entire care process. Findings: Only a small percentage of the interviewed nurses stated that they never used lies/that it is never acceptable to use lies (behaviour 10.4% and attitude 12.3%; p = 0.66). The situation in which nurses were more oriented to use lies was ‘to prevent or reduce aggressive behaviors’. Indeed, only the 6.7% in the attitude group and 3.8% in the behaviour group were against using lies. On the contrary, the case in which the nurses were less oriented to use lies was ‘to avoid wasting time giving explanations’, in this situation were against using lies the 51.0% of the behaviour group and the 44.6% of the attitude group. Conclusion: Our results, according to other studies, support the hypothesis of a low propensity of nurses to ethical reflection about use of lies. In our country, the implementation of guidelines about a correct use of lie in the relationship between health operators and patients would be desirable. (shrink)

Zusammenfassung In der Langzeitbetreuung von Menschen mit Demenz finden kommunikative Handlungen, die das Potenzial haben, Menschen mit Demenz zu täuschen, auf der Seite des Personals eine unterschiedliche Akzeptanz. Bushaltestellen, an denen kein Bus fährt, falsche Zugabteile, in denen ein Film die vorbeiziehende Landschaft simuliert, das Verstecken von Medikamenten in Nahrungsmitteln sind Interventionen, die Menschen in die Irre führen können, ohne ihnen tatsächlich falsche Informationen zu geben. Derartige kommunikative Praktiken wie Täuschungen, aber auch Lügen, definiert als absichtlich mitgeteilte irreführende Nachrichten, werfen (...) die Frage auf, wie sie ethisch begründet werden können. Anhand einer fiktiven Fallschilderung, in dem eine Pflegeheimbewohnerin mit Hilfe eines vorgetäuschten Telefonanrufs daran gehindert wird, das Heim zu verlassen, zeige ich, dass die Täuschung, als eine von drei möglichen Handlungsoptionen, aus der Fürsorgeperspektive positiv bewertet werden kann, da die Bewohnerin ohne Zwang am Verlassen des Heimes gehindert wird. Das Prinzip der Autonomie aber wird verletzt, da die Bewohnerin nicht frei zwischen der Täuschung und der Realität wählen kann. Hinsichtlich der Verpflichtung gegenüber Dritten ist die Täuschung problematisch, da orientierte Bewohner und Bewohnerinnen die Szene beobachten und befürchten könnten, sie würden ebenfalls getäuscht. Die Synthese der verschiedenen Argumente zeigt, dass ein Spaziergang in Verbindung mit einem validierenden Gespräch als weitere Handlungsoption die Prinzipien der Fürsorge und Autonomie in Einklang bringt, aber aufgrund des Zeitaufwands das Risiko einer ungerechten Verteilung der Pflegeressourcen birgt. (shrink)