Studies have shown that using robot pets in dementia care contributes to a reduction in loneliness and anxiety, and other benefits. Studies also show that, even when people know they are dealing with robots, they often treat the robot as though it is a real pet with genuine emotions. This disconnect between beliefs and behavior occurs not just for people living with dementia, but with cognitively healthy adults, including those who are knowledgeable about how robots work. One (...) possible explanation is that robot pets prompt contradictory beliefs, and so the use of robot pets encourages self‐deception. Sparrow argues that this makes the use of robot pets in dementia care morally objectionable. We disagree. We argue that Gendler's concept of alief offers a better explanation of the belief‐behavior disconnect observed when people interact with robot pets. An alief is a mental state composed of an automatic, arational, emotional, and behavioral response to representational input. Aliefs are not beliefs and are not subject to truth norms. Thus, on our view, harms associated with the use of robot pets in dementia care are not likely to include the self‐deceptions that Sparrow suggests. It might seem like philosophical hair‐splitting to claim that deception has not occurred because discordant aliefs rather than false beliefs have been formed, but this distinction matters. We argue that aliefs carry their own risks. These risks are important to consider when using robot pets in dementia care. (shrink)

Background:Many nursing homes appear as multicultural workplaces where the majority of healthcare providers have an ethnic minority background. This environment creates challenges linked to communication, interaction and cultural differences. Furthermore, the healthcare providers have varied experiences and understanding of what quality care of patients with dementia involves.Purpose:The aim of this study is to illuminate multi-ethnic healthcare providers’ lived experiences of their own working relationship, and its importance to quality care for people with dementia.Research design:The study is (...) part of a greater participatory action research project: ‘Hospice values in the care for persons with dementia’. The data material consists of extensive notes from seminars, project meetings and dialogue-based teaching. The text material was subjected to phenomenological-hermeneutical interpretation.Participants and research context:Participants in the project were healthcare providers working in a nursing home unit. The participants came from 15 different countries, had different formal qualifications, varied backgrounds and ethnic origins.Ethical considerations:The study is approved by the Norwegian Regional Ethics Committee and the Norwegian Social Science Data Services.Findings:The results show that good working relationships, characterized by understanding each other’s vulnerability and willingness to learn from each other through shared experiences, are prerequisites for quality care. The healthcare providers further described ethical challenges as uncertainty and different understandings.Discussion:The results are discussed in the light of Lögstrup’s relational philosophy of ethics and the concepts of vulnerability, ethic responsibility, trust and openness of speech.Conclusion:The prerequisite for quality care for persons with dementia in a multicultural working environment is to create arenas for open discussions between the healthcare providers. Leadership is of great importance. (shrink)

As the number of people affected by dementia increases rapidly, dementia has been transformed into an epidemic which endangers global health and wealth, and many populations are now living in what Jain terms a time of prognosis, in fear of the disease. Through its strong association with ageing and memory loss, dementia is conceived of as a linear decline into loss of self and death, and those with dementia as other. More significantly, imagined as a threat (...) that signifies both a loss of able-bodied workforce and a large population dependent on care and support, dementia inevitably feeds into the ‘crisis-of-care’ narrative that is prominent in many ageing societies. With one of the fastest ageing populations in the world, and an extremely low birth rate, the dementia prognosis is particularly acute in Japan and dementia is strongly linked to the idea of a ‘care crisis’. This situation has produced an increasing number of cultural representations of dementia and care and this paper considers three of these cultural texts, all rooted in the historical and cultural contexts in which they were produced: the novel The Twilight Years; the film Memories of Tomorrow; and the comic book Pecoross’ Mother and Her Days. The analysis concentrates upon their representations of care, seeing this as a space where the ethical relationship between self and other can be negotiated and where time with dementia can be imagined and re-imagined. The analysis of these texts from a feminist ethics perspective demonstrates the potential of popular and creative representations to interrogate and potentially expand the meanings of dementia, ageing and living in prognosis. (shrink)

Research indicates the essentiality of dignity as a vital component for quality of life, reconfirming the emphasis on dignity preservation in the international code of nursing ethics. Applying Noblit and Hare’s meta-ethnography, the aim of the study was to develop a theory model by synthesizing 10 qualitative articles from various cultural contexts, exploring nurse and allied healthcare professional perception/practice concerning dignity-preserving dementia care. “Advocating the person’s autonomy and integrity,” which involves “having compassion for the person,” “confirming the person’s (...) worthiness and sense of self,” and “creating a humane and purposeful environment,” was identified as a primary foundation for dignity-preserving dementia care. “Balancing individual choices among persons no longer able to make sound decisions, against the duty of making choices on behalf of the person,” which involves “persuasion” and/or “mild restraint,” was considered a crucial aspect in certain situations. “Sheltering human worth—remembering those who forget” was identified as a comprehensive motive and core value within dignity-preserving dementia care. (shrink)

In this article, a teleological model for analysis of everyday ethical situations in dementia care is used to analyse and clarify perennial ethical problems in nursing home care for persons with dementia. This is done with the aim of describing how such a model could be useful in a concrete care context. The model was developed by Sandman and is based on four aspects: the goal; ethical side-constraints to what can be done to realize such (...) a goal; structural constraints; and nurses’ ethical competency. The model contains the following main steps: identifying and describing the normative situation; identifying and describing the different possible alternatives; assessing and evaluating the different alternatives; and deciding on, implementing and evaluating the chosen alternative. Three ethically difficult situations from dementia care were used for the application of the model. The model proved useful for the analysis of nurses’ everyday ethical dilemmas and will be further explored to evaluate how well it can serve as a tool to identify and handle problems that arise in nursing care. (shrink)

In Ending Midlife Bias: New Values for Old Age, I argued that dignity can give practical guidance for patient care, especially dementia care.1 Using a capability-informed analysis, I detailed threats to central human capabilities that undermine dignity for people with dementia and provide practical suggestions for managing these threats in paradigm cases. In an article in this issue, Hojjat Soofi argues that a capability-informed account of dignity is exclusionary of people with dementia and does not (...) translate into practical ethics guidance.2 Soofi maintains that people with intellectual impairment ‘might not be able to exercise (or even have access to)’ the capabilities in question (Soofi, p4).2 Focusing on Nussbaum’s capability view, Soofi cautions, it gives a narrow, blinkered assessment of what it means to live a full and flourishing human life. In this commentary, I argue that Soofi’s critique of the capability view hastily generalises from a narrow set of premises to expansive, unwarranted conclusions. Soofi’s first objection, that a capability view of dignity excludes people with dementia, is a sweeping and strong claim. In its support, Soofi cites dignity of the Kantian sort, which requires ‘cognitive competence to exercise rational agency,’ to argue that ‘if we want to include people with dementia in the circle of human beings …. (shrink)

Specifying the moral demands of respect for the autonomy of people with dementia (PWD) in nursing homes (NHs) remains a challenging conceptual task. These challenges arise primarily because received notions of autonomous decision-making and informed consent do not straightforwardly apply to PWD in NHs. In this paper, I investigate whether, and to what extent, the influential account of autonomous decision-making and informed consent proposed by Beauchamp and Childress has applicability and relevance to PWD in NHs. Despite its otherwise practical (...) orientation and suitability for acute care settings, I identify three problems with this account when applied to PWD in NHs. These problems include (1) intentionality as an all-or-nothing condition of autonomous decision-making, (2) construing consent as one-off authorization, and (3) unresolved ambiguities around the primacy of precedent autonomy over best interest considerations. To address these problems, I propose and defend a number of revisions to Beauchamp and Childress’s account. First, I suggest that we consider intentionality as a non-binary criterion of autonomous decision-making. Second, I argue for a model of process consent to overcome the moral inadequacy of construing consent as one-off authorization in NHs. And, to overcome the third problem, I suggest accounting for both precedent and extant autonomy of PWD, considering mandates of precedent autonomy not as prescriptive but as informative, and drawing a less rigid distinction between autonomy considerations and best interest judgements. I conclude that this revised version of Beauchamp and Childress’s account fares better than the original version in capturing relevant autonomy considerations to care for PWD in NHs. (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)

There is an urgent need to learn how to appropriately integrate technologies into dementia care. The aims of this Delphi study were to project which technologies will be most prevalent in dementia care in five years, articulate potential benefits and risks, and identify specific options to mitigate risks. Participants were also asked to identify technologies that are most likely to cause value tensions and thus most warrant a conversation with an older person with mild dementia (...) when families are deciding about their use. Twenty-one interdisciplinary domain experts from academia and industry in aging and technology in the U.S. and Canada participated in a two-round online survey using the Delphi approach with an 84% response rate and no attrition between rounds. Rankings were analyzed using frequency counts and written-in responses were thematically analyzed. Twelve technology categories were identified along with a detailed list of risks and benefits for each. Suggestions to mitigate the most commonly raised risks are categorized as follows: intervene during design, make specific technical choices, build in choice and control, require data transparency, place restrictions on data use and ensure security, enable informed consent, and proactively educate users. This study provides information that is needed to navigate person-centered technology use in dementia care. The specific recommendations participants offered are relevant to designers, clinicians, researchers, ethicists, and policy makers and require proactive engagement from design through implementation. (shrink)

Despite negative effects on their health and social lives, many informal carers of people living with dementia claim to be acting in accordance with a moral obligation. Indeed, feelings of failure and shame are commonly reported by those who later give up their caring responsibilities, suggesting a widespread belief that professional dementia care, whether delivered in the person's own home or in an institutional setting, ought always to be a last resort. In this paper, however, I suggest (...) that this common intuition gets things the wrong way around. Adopting a relational egalitarian framework, I argue that the most serious injustices engendered by present‐day dementia care services are contingent on broader societal structures—they can thus be ameliorated relatively easily (if resource intensively) by changing those structures. Informal dementia care, on the other hand, carries similar risks of injustice and is much more resistant to structural reform. While there may be moral obligations to provide informal dementia care in present‐day societies, then, they arise because of the deficiencies of professional care, not the virtues of its informal counterpart. Though we may be far from achieving just care arrangements in most of our societies, we must never lose sight of the fact that, when we engage in morally permitted informal dementia care, we are exercising our last resort. (shrink)

Background:Advance care planning gives patients and their family members the possibility to consider and make decisions regarding future care and medical procedures.Aim:To explore the view of people in the early stage of dementia on planning for future care.Research design:The study is a qualitative interview study with a semistructured interview guide. The data were analyzed according to the Qualitative Analysis Guide of Leuven.Participants and research context:Dementia nurses assisted in the recruiting of people with dementia for (...) participation in the study. Study information was mailed to 95 people with early stage dementia. Ten people with dementia and eight caregiver spouses participated in the study.Ethical considerations:People with dementia belong to a vulnerable patient group, and care was taken in the areas of informed consent and accessible information.Findings:The views of people with dementia are characterized by a complex storyline involving tensions and movement within the themes of wants, beliefs, and levels of insight. Participants wanted to think about the future but also wanted to live in the here and now.Discussion:High demands are placed on the advance care planning process for people with dementia and their family caregivers. A dignity-enhancing approach in dementia care emphasizes the dignity of and respect for this vulnerable and care-dependent patient group.Conclusion:The process of advance care planning in dementia care needs to go beyond person-centered care to a relationship-centered process. The illness trajectory and the impact on autonomy need to be taken into consideration. (shrink)

Lies and deception are often used in the care for demented elderly and often with the best intentions. However, there is a strong moral presumption against all forms of lying and deceiving. The goal of this article is to examine and evaluate concrete examples of deception and lies in dementia care, while addressing some fundamental issues in the process.It is argued that because dementia slowly diminishes the capacities one needs to distinguish between truths and falsehoods, the (...) ability to be lied to also disappears. When the moral reasons to reject lying are explored, it becomes clear that most of them also hold where demented patients are concerned, though this also depends on the capacities of the patient. Lying, though prima facie wrong, can sometimes be justified with an appeal to well-being. The relationship between well-being and the truth is further explored. Two examples of deceiving demented patients for reasons of beneficence are discussed, from which it can be concluded that although in some cases beneficent lies or deception will not enhance patients’ well-being, there are circumstances in which they do. In general, methods that enhance the well-being of the patient without deception or lies should be favored above options that use deceit, and methods of getting the truth across without hurting the patient should be favored above blunt honesty. Finally, it is important to note that not only the patient but also the nursing and medical staff can be affected by the use of lies and deception. (shrink)

What is the value of an early diagnosis of dementia in the absence of effective treatment? There has been a lively scholarly debate over this question, but until now patients have not played a large role in it. Our study supplements biomedical research into innovative diagnostics with an exlporation of its meanings and values according to patients. Based on seven focusgroups with patients and their care-givers, we conclude that stakeholders evaluate early diagnostics with respect to whether and how (...) they expect it to empower their capacity to care. They value it, for instance, with respect to whether it explains experienced complaints, allows to start a process of psychological acceptance and social adaptation to the expected degeneration, contributes to dealing with anxieties, informs adequately about when to start preparing for the end of life, informs the planning of a request for euthanasia, or allows society to deal with a growing amount of dementia patients. Our study suggests that information about disease is considered ‘harmful’ or ‘premature’ when recipients feel unable to act on that information in their care. The results of this research offers input to further ethical research. It invites to adopt a care perspective in evaluation and to seek ways to prevent the ‘harm’ that such diagnostic methods can bring about. (shrink)

Background Despite the great benefits of intelligent assistive technology (IAT) for dementia care – for example, the enhanced safety and increased independence of people with dementia and their caregivers – its practical adoption is still limited. The social and ethical issues pertaining to IAT in dementia care, shaped by factors such as culture, may explain these limitations. However, most studies have focused on understanding these issues within one cultural setting only. Therefore, the aim of this (...) study was to explore and compare the attitudes of Israeli and German dementia experts toward IAT in dementia care, to contribute to a more cultural-comparative perspective. Methods Semi-structured interviews were conducted with 35 experts (15 Israelis and 20 Germans) in key roles in health and community services for people with dementia as well as in the fields of dementia and IAT (e.g., computer science, electrical/biomedical engineering, ethics, nursing, and gerontology). Thematic content analysis was used to analyze the data. Findings Israeli and German experts identified the same social accelerators in the development and implementation of IAT in dementia care (i.e., changes in family structure and social digitization) and benefits of adopting IAT (e.g., enhancing the safety of people with dementia and increasing their independence). However, there were differences in inhibitor/risk assessments between the two groups. Namely, economic considerations and the cognitive capacity of people with dementia were identified by both groups as inhibitors, while Israeli experts additionally reported stigma and ageism. Whereas both groups agreed that IAT might reduce human connection, and that the technology is not yet reliable enough, German experts highlighted concerns regarding privacy; in contrast, Israeli experts prioritized safety over privacy. Conclusions Our research findings allow for the identification of relevant similarities but also important differences between German and Israeli experts’ perspectives. As such, an important basis has been provided for a more in-depth discussion regarding where, why, and how culturally-sensitive technology development is needed. (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: Dementia care at home often involves decisions in which the caregiver must weigh safety concerns with respect for autonomy. These dilemmas can lead to situations where caregivers provide care against the will of persons living with dementia, referred to as involuntary treatment. To prevent this, insight is needed into how family caregivers of persons living with dementia deal with care situations that can lead to involuntary treatment. Objective: To identify and describe family caregivers’ (...) experiences regarding care decisions for situations that can lead to involuntary treatment use in persons living with dementia at home. Research design: A qualitative descriptive interview design. Data were analysed using the Qualitative Analysis Guide of Leuven. Participants and research context: A total of 10 family caregivers providing care for 13 persons living with dementia participated in in-depth semi-structured interviews. Participants were recruited by registered nurses via purposive sampling. Ethical consideration: The study protocol was approved by the Ethics Committee of the University Hospitals Leuven and the Medical Ethical Test Committee Zuyderland. Findings: Family caregivers experience the decision-making process concerning care dilemmas that can lead to involuntary treatment as complicated, stressful and exhausting. Although they consider safety and autonomy as important values, they struggle with finding the right balance between them. Due to the progressive and unpredictable nature of dementia, they are constantly seeking solutions while they adapt to new situations. Family caregivers feel responsible and experience social pressure for the safety of persons living with dementia. They may be blamed if something adverse happens to the persons living with dementia, which increases an already stressful situation. Their experience is influenced by characteristics of the care triad such as practical and emotional support, knowledge, and previous experiences. Discussion and conclusion: To prevent involuntary treatment, professionals need to proactively inform family caregivers, and they need to support each other in dealing with complex care situations. (shrink)

Appeals to the dignity of people with dementia are widespread in the current literature on dementia care. One influential account of dignity in the wider philosophical and bioethical literature that has remained underexplored in the context of dementia care is that of Martha Nussbaum. This paper critically examines Nussbaum’s account of dignity and aims to determine what moral guidance this account can offer for the provision of care to people with dementia. To that (...) end, first, I identify four possible objections to appeals to dignity in dementia care. These objections are (1) redundancy of the dignity talk, (2) exclusionary implications, (3) reliance on (suspect forms of) speciesism and (4) unclear practical implications. Then, I discuss whether, and to what extent, Nussbaum’s account of dignity can overcome these objections. I argue that Nussbaum’s account, in its original form, struggles to overcome the problem of exclusionary implications and consequently the problem of unclear practical implications. I argue for a modified version of Nussbaum’s account of dignity. I demonstrate that this modified version can better overcome all of the four objections, and it provides relatively clearer moral guidance for the provision of care to people with dementia. The modified version of Nussbaum’s account is predicated on a novel dementia-specific model of flourishing, which draws on Kitwood and Bredin’s empirically informed list of indicators of well-being for people with dementia. (shrink)

Objectives: Technology can assist and support both people with dementia and caregivers. Recently, technology has begun to embed remote components. Timely with respect to the pandemic, the present work reviews the most recent literature on technology in dementia contexts together with the newest studies about technological support published until October 2020. The final aim is to provide a synthesis of the timeliest evidence upon which clinical and non-clinical decision-makers can rely to make choices about technology in the case (...) of further pandemic waves.Methods: A review of reviews was performed alongside a review of the studies run during the first pandemic wave. PsycInfo, CINAHL, and PubMed-online were the databases inspected for relevant papers published from January 2010.Results: The search identified 420 articles, 30 of which were reviews and nine of which were new studies meeting the inclusion criteria. Studies were first sorted according to the target population, then summarized thematically in a narrative synthesis. The studies targeting technologies for PWD were categorized as follows: monitoring and security purposes, sustaining daily life, and therapeutic interventions. Each category showed potential benefits. Differently, the interventions for caregivers were classified as informative, psycho-education programs, psychosocial-supportive, therapeutic, and cognitive/physical training. Benefits to mental health, skills learning, and social aspects emerged.Conclusions: The evidence shows that technology is well-accepted and can support PWD and caregivers to bypass physical and environmental problems both during regular times and during future pandemic waves. Nevertheless, the lack of a common methodological background is revealed by this analysis. Further and more standardized research is necessary to improve the implementation of technologies in everyday life while respecting the necessary personalization. (shrink)

Journal of Applied Philosophy, EarlyView.

In this paper, I critically examine Kitwood's account of personhood for people with dementia. His account has been influential in supporting appeals to personhood in both clinical and bioethical literature on dementia care. I demonstrate that Kitwood's account does not run into common objections against invoking personhood as a normative notion, namely, the objection of exclusionary implications and the objection of redundancy. I argue, however, that Kitwood's account suffers from two other major conceptual issues. These include (a) (...) unreasonable social contingency, and thus, precariousness, of his notion of personhood for people with dementia; and (b) insufficient theoretical connection between his account of personhood and his proposed list of indicators of well‐being for people with dementia. Despite these issues, I do not agree with the following view: that, in the context of dementia care, scholars should refrain from appealing to personhood considerations. Instead, I defend the view that while Kitwood fails to offer a compelling theoretical account of personhood of people with dementia, his empirically driven list of indicators of well‐being and his notion of malignant social phycology seem to be sensitive to key ethical considerations relevant to dementia care. I propose that we pursue alternative ways of explaining what is morally (un) desirable about them without (explicit) appeal to personhood. (shrink)

In this paper, I address the effects of social distancing for embodied lived experience in relation to dementia care and experiences of dementia. From a critical phenomenological perspective, I focus specifically on the safety measures of physical distancing and face-masking in pandemic times, asking whether they might risk marginalizing and disembodying people with dementia, especially in isolated healthcare settings. As much as these measures offer physical protection against spreading the virus, I consider how they might disrupt (...) intersubjective processes (e.g., calming social or therapeutic touch) and contribute to “an alienated bodily communication” (Dolezal 2020). From Husserl and Merleau-Ponty’s philosophies of embodiment and enactive theories of intersubjectivity, to more recent phenomenological work on illness, many authors argue that our existential being-in-the-world is embodied in multimodal and intersubjective ways (Fuchs and De Jaeger 2009; Carel 2016; Ratcliffe 2008; Kontos 2011). For this reason, our lived bodies need to stay in touch and positively interact with other lived bodies. Based on empirical studies of multisensory and interactive therapy in nursing homes before and during the COVID-19 pandemic, I emphasize the effects of distant socializing for patients, care, and carers. My aim is to address the broader structures and discursive practices, which have undergone dramatic changes due to the spread of COVID-19. (shrink)

The clinical relationship has been underexplored in dementia care. This is in part due to the way that the clinical relationship has been articulated and understood in bioethics. Robert Veatch’s social contract model is representative of a standard view of the clinical relationship in bioethics. But dementia presents formidable challenges to the standard clinical relationship, including ambiguity about when the clinical relationship begins, how it weathers changes in narrative identity of patients with dementia, and how the (...) intimate involvement of family fits alongside a paradigmatically dyadic relationship. Drawing on work in recent feminist theory, a critique is offered of the standard clinical relationship in bioethics as underwritten by an individualistic conception of autonomy. An alternative view of the clinical relationship in dementia, one that embraces a relational account of autonomy, is put forward. (shrink)

Since John Locke, regnant conceptions of personhood in Western philosophy have focused on individual capabilities for complex forms of consciousness that involve cognition such as the capability to remember past events and one’s own past actions, to think about and identify oneself as oneself, and/or to reason. Conceptions of personhood such as Locke's qualify as cognition-oriented, and they often fail to acknowledge the role of embodiment for personhood. This article offers an alternative conception of personhood from within the tradition of (...) phenomenology of the body. The article presents a phenomenological analysis of joint musical activity in dementia care and outlines an intercorporeal conception of personhood based on this analysis. It also provides a philosophical basis for the idea that others can hold us in personhood, and it questions a strict one-body-one-person logic that has pertained in much personhood debate. (shrink)

Hojjat Soofi successfully developed a novel dementia-specific model of human flourishing.1 Based on a modified version of Nussbaum’s account of dignity (ie, the theoretical framework of the capabilities approach), and integrated with Kitwood and Bredin’s empirically informed list of indicators of well-being for people with dementia (ie, the field of empirically informed ethics), this model provides guidance on how to actually care for people with dementia in real-life practices, according to the moral requirements of respect for (...) dignity. More specifically, we deem the contributive value of the model to be threefold. (1) It is a successful specification and contextualisation of Nussbaum’s original list of capabilities in the context of dementia care. (2) The table clearly distinguishes between dementia-specific capabilities and their possibly dementia-related progressive deprivation (ie, the internal conditions), and the possible external setbacks or facilitators for human flourishing. (3) The model is proposed as being open to include new and additional insights from further empirical research on what forms of caregiving do (or do not) align with respect for the dignity of people with dementia. In our commentary, we want to focus on the source of dignity, that is, the locus and starting point of our moral requirements on which the author takes an explicit stance. First of all, by being founded on the list of dementia-specific capabilities, Soofi’s model places the source of our moral requirements of respect for the dignity of people with dementia within the persons themselves, ‘having some of the basis capabilities listed’ (p.6). This, in turn, brings classic discussions concerning a …. (shrink)

When a person with dementia (PwD) makes a specific request or behaves in a particular way that is inappropriate or dangerous and based on a false understanding of reality, there is a particular technique that caregivers may use to try and manage the situation. The technique is known as ‘diversion’ and it works by affirming the false beliefs and behaviour of a PwD and creating the false impression that their specific request will be fulfilled. It may take the form (...) of an explicit lie or any other communicative response or provision of care that either explicitly or tacitly affirms their false beliefs. It therefore raises the same kind of ethical issues as when lying (or not telling the truth) is done for so called ‘therapeutic’ purposes. The main type of argument used to justify this so called ‘therapeutic lying’ is that it is primarily aimed at benefiting the patient rather than the liar. The same kind of argument can be made for diversion, which is that it is primarily aimed at benefiting the PwD by aiming to ensure their safety and well-being. I argue that insofar as diversion is practiced in this way, it is consistent with the idea of ‘person-centred care’ (PCC) and can be ethically justified on those grounds. Therefore, however, we must be wary of situations where diversion is not practiced in this way, where it is primarily aimed at benefiting caregivers or care providers, and thus inconsistent with PCC. (shrink)

Contemporary bioethics pays considerable attention to the ethical aspects of dementia care. However, ethical issues of sexuality especially as experienced by institutionalized persons with dementia are often overlooked. The relevant existing ethics literature generally applies an implicit philosophical anthropology that favors the principle of respect for autonomy and the concomitant notion of informed consent. In this article we will illustrate how this way of handling the issue fails in its duty to people with dementia. Our thesis (...) is that a more inclusive philosophical anthropology is needed that also heeds the fate of this growing population. Drawing on the tradition of phenomenology, we will chalk out an anthropological framework that rests on four fundamental characteristics of human existence: the decentered self, human embodiment, being-in-the-world and being-with-others. Our aim in this article is thus to tentatively put forward a broader perspective for looking at aged sexuality in institutionalized people with dementia. Hopefully the developed framework will mark the beginning of a new and refreshed ethical reflection on the topic at hand. (shrink)

This analysis examines the practice of care providers in residential aged care lying to residents with dementia. Qualitative data were collected through multiple methods. Data here represents perceptions from registered and enrolled nurses, personal care assistants, and allied health professionals from five residential aged care facilities located in Queensland, Australia. Care providers in residential aged care facilities lie to residents with dementia. Lying is conceptualized as therapeutic whereby the care provider’s intent (...) is to eliminate harm and also control behaviour. Care providers of residents with dementia in RACFs need guidance around lying. An ethical framework cognisant of an ethical theory of good and ethical theory of right supplemented by a theory of virtue is proposed. A complimentary four stage communication strategy that promotes truth telling as a first option while also recommending the lie as a suitable strategy is also promoted. (shrink)

In his paper, ‘What moral work can Nussbaum’s account of human dignity do in the context of dementia care?’, Soofi seeks to modify Nussbaum’s conception of dignity to deal with four key objections that arise when appeals to dignity are made in the context of dementia care. We will not discuss the first of these, the redundancy of dignity talk, since this issue has already been much discussed in the literature. Instead, we will focus on the (...) remaining three issues raised, that of the exclusion of persons with advanced dementia from having dignity, unjustified speciesism as a ground of human dignity, and the unclear practical implications that follow from having dignity. (shrink)

Advance directives (ADs) have for some time been championed by ethicists and patient associations alike as a tool that people newly diagnosed with dementia, or prior to onset, may use to ensure that their future care and treatment are organized in accordance with their interests. The idea is that autonomous people, not yet neurologically affected by dementia, can design directives for their future care that caregivers are morally obligated to respect because they have been designed by (...) autonomous individuals. In this paper, we first criticize the idea that ADs can retain moral authority in severe dementia by arguing that it is paradoxical. Second, we consider two arguments that initially seem to refute this critique of ADs, but we eventually dismiss them. The first argument states that ADs retain moral authority in severe dementia because autonomously formed interests, for example, ADs, can only be appropriately discarded by autonomous persons. This we term the historical autonomy argument. We dismiss it by demonstrating how we, in analog cases, are not obligated to continue to respect autonomously formed interests even though they have been discarded under nonappropriate conditions. The second argument is that ADs can be justified by what we term external interests. While we agree that people with severe dementia plausible can be said to have external interests, we show that ADs cannot express such interests and hence cannot be justified by them. We conclude that none of the discussed arguments support the use of ADs and because of this, the idea of ADs should be reassigned. (shrink)

ABSTRACT This article concentrates on the care for people who suffer from progressive dementia. Dementia has a great impact on a person’s well‐being as well as on his or her social environment. Dealing with dementia raises moral issues and challenges for participants, especially for family members. One of the moral issues in the care for people with dementia is centred on responsibilities; how do people conceive and determine their responsibilities towards one another? To investigate (...) this issue we use the theoretical perspective of Margaret Walker. She states that ideas about identity play a crucial role in patterns of normative expectations with regard to the distribution of responsibilities in daily practices of care. The results of this study show how the identity of a family‐member is put under pressure and changes during her loved one’s illness that leads to difficulties and misunderstandings concerning the issue of responsibility. These results offer an insight into the complexities of actual practices of responsibility and highlight the importance for those caring for people with dementia of attending carefully to how they see themselves and how they see other people involved (Who am I? Who do I want to be for the other?). Answers to such questions show what people expect from themselves and from one another, and how they, at any rate, are distributing responsibilities in a given situation. Professional caregivers should take into account that family members might have different ideas about who they are and consequently about what their responsibilities are. (shrink)

This paper examines narrative approaches to care within the context of dementia. It reviews the function of stories and explores some of the narrative genres that shape the cultural perceptions of dementia. We argue that narrative intelligence within healthcare is an important element in nurturing communal self‐identity for people living with dementia. Listening and responding to stories and the cultural framework that this encompasses is an embodied action that is not just related to cognitive recall but (...) situates us within a cultural community. People with dementia may have challenges in maintaining narrative legitimacy in the face of fractured stories and incoherent narratives. Health professionals can offer support in reframing and presenting counterstories that maintain identities that can potentially be marginalised, silenced and open to narrative foreclosure. This process requires health professionals to be attentive and responsive to how patients with dementia and their supporters construct and position the stories they tell and the meaning(s) they attach to them. (shrink)

Intimacy and sexuality expressed by nursing home residents with dementia remains an ethically sensitive issue for care facilities, nursing staff and family members. Dealing with residents’ sexual longings and behaviour is extremely difficult, putting a burden on the caregivers as well as on the residents themselves and their relatives. The parties in question often do not know how to react when residents express themselves sexually. The overall aim of this article is to provide a number of clinical-ethical considerations (...) addressing the following question: ‘How can expressions of intimacy and sexuality by residents with dementia be dealt with in an ethically responsible way?’ The considerations formulated are based on two cornerstones: the current literature on older peoples’ experiences regarding intimacy and sexuality after the onset of dementia, and an anthropological-ethical framework addressing four fundamental pillars of human existence namely the decentred self, human embodiment, being-in-the-world and being-with-others. The resulting considerations are oriented toward the individual sphere, the partnership sphere, and the institutional sphere. The continuous interaction between these spheres leads to orientations that both empower the residents in question and respect the complex network of relationships that surrounds them. (shrink)

Many studies, across various disciplines, have confirmed that artistic and cultural programs can significantly improve the experience of persons with dementia. While drawing on this data, this paper takes a different angle. It asks what lessons art practiced in the context of dementia care can teach us, as thinkers, carers, policymakers, friends, and all those with the interests of people with dementia at heart. It then argues that these lessons are threefold: firstly, they teach a strikingly (...) actual lesson on the contemporary theories of rationality; secondly, and most importantly, they are a valuable lesson about what we owe each other, about the meaning of solidarity, citizenship, and the fundamental features of a decent society, and thirdly, they give an unusual insight into the theory of art and its meaning in the constitution of solidarity. All of these arguments amount to the conclusion that social practices of solidarity can be salutary both to persons with dementia, and also to the paradoxes of contemporary healthcare and some of the maladies of today’s society. Fulfilment of the duties of solidarity (for example, by introducing participatory art programs in dementia care settings) does not require major financial expense. It does, however, require a lot of moral imagination, for which this paper advocates. (shrink)

BackgroundDementia 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.MethodsThe 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.ResultsTo 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.ConclusionWe 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. (shrink)

Carers often interfere with the choices of people living with dementia. On neorepublican and (most) relational egalitarian views, interference can be justified if it tracks a person's interests: if it does not lead to a relationship of domination. However, the kind of environment-shaping interventions carers often pursue would be considered infantilising or objectionably paternalistic in other cases. In this paper, I defend this indirect approach and argue that it offers the best prospects of dementia care without domination.

Volume 20, Issue 8, August 2020, Page 104-106.

Within the still-dominant medical discourse on dementia, disorders of language feature prominently among diagnostic criteria. In this view, changes in ability to produce or understand coherent speech are considered to be an inevitable result of neuropathology. Alternative psychosocial accounts of communicative challenges in dementia exists, but to date, little emphasis has been placed on people with dementia as social actors who create meaning and context from their social interactions. In this article we draw on Bakhtin’s concepts of (...) the carnivalesque, heteroglossia, polyphony and dialogism to analyse a series of interactions involving people with dementia in day and residential care environments. We argue that many of the communicative challenges faced by people with dementia arise from the social environments in which they find themselves, and that the utterances of people with dementia in the face of these social challenges show many of the hallmarks of cultural resistance identified by Bakhtin. (shrink)

The authors offer a fresh look at the debate about the use of assisted nutrition and hydration in advanced dementia. The philosophical and ethical issues are presented. The importance of distinguishing basic care from medical acts is explained. A key question is addressed: Does ANH nourish and hydrate the patient with dementia? The ANH debate is placed in its cultural context and contrasted with the Catholic response. A clinical analysis of the evidence for benefit and harm of (...) ANH in advanced dementia is given. The authors point out the lack of hard evidence against ANH, discuss questions that need further clinical research, and argue that there is sufficient evidence for a presumption, in principle, in favor of ANH in patients with advanced dementia. National Catholic Bioethics Quarterly 14.1 : 53–63. (shrink)