This article presents a critique of an article previously featured in Nursing Philosophy (10: 26–33) by Ursula Naue and Thilo Kroll, who suggested that people living with dementia are assigned a negative status upon receipt of a diagnosis, holding the identity of the ‘demented other’. Specifically, in this critique, we suggest that unwitting use of the adjective ‘demented’ to define a person living with the condition is ill-informed and runs a risk of defining people through negative (self-)attributes, which has a (...) deleterious impact upon that person's social and relational personae. Moreover, use of the locution ‘demented’ reinforces a divide between the ‘demented’ (them) and the ‘healthy others’ (us). Social constructionist theory, malignant positioning and viewing people with dementia as semiotic subjects are the philosophical pillars through which we construct the main arguments of the critique. The article concludes with the voice of one of the authors, a younger person with dementia, asking for language in dementia care to be carefully reconsidered and reframed and for the recognition of the diagnosed person's agency in the conduct of their day-to-day lives. (shrink)

Grant Gillett's (2009) welcome and extremely thought-provoking target article addresses many complex issues of such far-ranging consequence that it seems impossible to provide a commentary worthy o...

This paper explores the impact of the concepts of identity and difference on demented persons (especially on persons with Alzheimer's disease). The diagnosis of dementia is often synonymous with the assertion that demented individuals are no longer capable of making reasonable decisions. But rationality is an important aspect of characterizing a person's identity. Hence, this prevailing image of dementia as a loss of self and a change of identity leads to the situation that demented persons represent difference and otherness. Here, (...) the brain and the mind act as the source for difference. The paper discusses several identity concepts with regard to demented persons and the relationship between identity and difference in dementia. This analysis is accompanied by an examination of the current biopolitics of dementia and ageing as biopolitics constitutes the socio‐political‐medical understanding of dementia. Challenges and possibilities for dementia care will be explored in the context of this complex relationship between theoretical concepts and political, medical, and health‐care practices. (shrink)

Anticipation of future decisions can be important for individuals at risk for diseases to maintain autonomy over time. For future treatment and care decisions, advance care planning is accepted as a useful anticipation tool. As research with persons with dementia seems imperative to develop disease-modifying interventions, and with changing regulations regarding research participation in Germany, advance research directives (ARDs) are considered a solution to include persons with dementia in research in an ethically sound manner. However, little is known about what (...) affected people deem anticipatable.This contribution provides a critical reflection of the literature on anticipation and of a qualitative study on the assessment of ARDs with persons with cognitive impairment in Germany. It combines theoretical and empirical reflections to inform the ethical-legal discourse.Anticipation involves the conceptual separation of the past, the present, and the future. Including dimensions such as preparedness, injunction, and optimization helps in establishing a framework for anticipatory decision-making. While dementia may offer a window of time to consider future decisions, individual beliefs about dementia including fears about stigma, loss of personhood, and solitude strongly impact anticipating sentiments. Concepts of anticipation can be useful for the examination of uncertainty, changing values, needs, and preferences interconnected with the dementia trajectory and can serve as a means to make an uncertain future more concrete. However, fears of losing one’s autonomy in the process of dementia also apply to possibilities of anticipation as these require cognitive assessment and reassessment of an imagined future with dementia. (shrink)

The article focuses on the impact of the concept of self-care on persons who are understood as incapable of self-care due to their physical and/or mental ‘incapacity’. The article challenges the idea of this health care concept as empowerment and highlights the difficulties for persons who do not fit into this concept. To exemplify this, the self-care concept is discussed with regard to persons with Alzheimer’s disease (AD). In the case of persons with AD, self-care is interpreted in many different (...) ways—depending on the point of view, for instance as an affected person or a carer. To prevent a marginalisation of the growing group of elderly persons with dementia, the article argues that concepts such as those of personhood, wellbeing, autonomy, rationality and normality have to be re-thought with regard to an increasingly ageing population. Taking into account that AD as a socio-medical construct has to be understood in the context of power relations, the article focuses on the mutual influence between the concepts of self-care and of AD and its possible impact on governing dementia and AD in particular. Michel Foucault’s considerations on ‘technologies of the self’ provide the basis for the discussion of the self-care concept within existing societal power relations. (shrink)

The events of the Holocaust of European Jews (and others) by the Nazi state between 1939 and 1945 deserve to be remembered and studied by the nursing profession. By approaching literary texts written by Holocaust ‘survivors’ from an interpersonal dimension, a reading of such works can develop an ‘ethic of responsibility’. By focusing on such themes as rationality, duty, witness and the virtues, potential lessons for nurses working with people in a variety of settings can be drawn. Implications for the (...) teaching of nursing ethics are made in the areas of the virtues, relationships, professional ethics and the moral community of nursing. (shrink)

The following abstracts were selected by AJOB-Neuroscience judges as the best submitted to the International Neuroethics Society 2021 Annual Meeting.

The task of aligning the philosophical and clinical perspectives on ethics is a challenging one. Clinical practice informs philosophy, not merely by supplying cases, but through shaping and testing philosophical concepts in the reality of the clinical world. In this paper we explore several aspects of the relationship between the philosophical and the clinical within a framework of palliative care for people living with Alzheimer's disease. We suggest that health professionals have a moral obligation to question previous assumptions concerning the (...) quality of life among people with Alzheimer's, and to address the question: does the concept of palliative care properly embrace people with severe dementia? We propose an ethic of palliative care for people with Alzheimer's that is based, not on the traditionally understood principle of autonomy, but on the need to listen to those living with the disease, acknowledging their profound loss of cognitive abilities, with a focus on preventing and relieving suffering, and improving the individual's quality of life. (shrink)

It may seem paradoxical to speak of the ‘goodlife’ for demented elderly. Many people consider dementia to be a life-wrecking disease and nursing homes to be terrible places. Still, it is relevant to ask how we can make life as good as possible for demented nursing home residents. This paper explores what three standard philosophical accounts of well-being — subjective preference theory, objectivist theories, and hedonism — have to say about the good life for demented people. It is concluded that (...) the relevant differences between the various philosophical theories manifest themselves not so much in their general account of the substantial content of ‘the good life’ but in a number of specific controversies. These concern the nature of well-being, the necessity of endorsement by the patient, the value of experience and the need for experiences to be rooted in reality. Moreover, it is argued that further research should pay detailed attention to the process of dementia and to the effects of this process on patients' identities, self-conceptions, capacities, preferences, values and the like, and that a narrative approach which incorporates the factor time may offer a more comprehensive account of the good life for demented elderly. (shrink)

In recent years geographic interest has focused increasingly on the moral and ethical dimensions of social constructions. Much of this work has followed the direction taken by moral philosophers whose principled approach has been applied to a range of ethically or morally problematic contexts. The challenge has been to apply a geographic perspective to an ethical dilemma that seems intractable at the level of ethical principle. This paper uses a geographic perspective to consider in a concrete fashion a current bioethical (...) concern: defining who will or will not be eligible for an organ transplant. Methodologically, it uses the analytic hierarchy process, a multicriterion decision making approach, and Q-analysis to analyze the resulting data. Long known by geographers, Q-analysis presents a methodology for the analysis of relations between two sets of criteria, in this case focus groups and their responses to a hierarchy of criteria. The result is a topology that not only presents but also explains the moral reasoning of members of a diverse set of focus groups constituted at a Canadian hospital to consider the question of organ transplant eligibility. (shrink)

In recent years geographic interest has focused increasingly on the moral and ethical dimensions of social constructions. Much of this work has followed the direction taken by moral philosophers whose principled approach has been applied to a range of ethically or morally problematic contexts. The challenge has been to apply a geographic perspective to an ethical dilemma that seems intractable at the level of ethical principle. This paper uses a geographic perspective to consider in a concrete fashion a current bioethical (...) concern: defining who will or will not be eligible for an organ transplant. Methodologically, it uses the analytic hierarchy process, a multicriterion decision making approach, and Q-analysis to analyze the resulting data. Long known by geographers, Q-analysis presents a methodology for the analysis of relations between two sets of criteria, in this case focus groups and their responses to a hierarchy of criteria. The result is a topology that not only presents but also explains the moral reasoning of members of a diverse set of focus groups constituted at a Canadian hospital to consider the question of organ transplant eligibility. (shrink)

Early announcements of this special journal issue solicited authors interested in contributing articles on the subject of “costs at the end of life.” Those who replied were then informed the title was being changed, on the basis of early subscriber interest, in “rational end-of-life treatment.” Because that seemed a still inadequate reflection of the authorial concerns of responding potential contributors, the editors again changed the title, two months later, to “Making Treatments More Rational and Compassionate for the Chronically Critically Ill.” (...) At that point the editors gave up and decided this issue’s final title would be determined only after the papers were submitted and reviewed. (shrink)

For all its apparent debate bioethical discourse is in fact very narrow. The discussion that occurs is typically within limited parameters, rarely fundamental. Nor does it accommodate divergent perspectives with ease. The reason lies in its ideology and the political and economic perspectives that ideology promotes. Here the ideology of bioethics' fundamental axioms is critiqued as arbitrary and exclusive rather than necessary and inclusive. The result unpacks the ideological and political underpinnings of bioethical thinking and suggests new avenues for a (...) broader debate over fundamentals, and a different approach to bioethical debate. (shrink)

This study investigates what professional caregivers working in nursing homes consider to be a good life for residents suffering from dementia. Ten caregivers were interviewed; special attention was paid to the way in which they deal with conflicting values. Transcripts of the interviews were analysed qualitatively according to the method of grounded theory. The results were compared with those from a similar, earlier study on ideals found in mission statements of nursing homes. The concepts that were mentioned by most interviewed (...) participants as important for a good life were ‘peace and quiet’, ‘going along with subjective experience’ and ‘no enforcement: the way the resident wants it’. A considerable overlap was found between the interviews and the mission statements; however, when compared with the mission statements, the interviews put less emphasis on individuality and on giving meaning, and more on offering residents pleasant activities. When faced with conflicting values, caregivers tend to make pragmatic and more or less intuitive decisions. Although this has its merits, it may be desirable to stimulate conscious reflection regarding conflict between different values. (shrink)

As patient autonomy expands, a highly controversial issue has emerged. Should the advance directives of refusing life-saving treatments or requesting euthanasia of persons with dementia who express changed minds or are often in a happy state be fulfilled? There are two autonomy-related positions. The mainstream position in philosophical discussions supports the priority of ADs based on precedent autonomy. Buchanan and Brock, and Dworkin represent this view. The other position supports the priority of PWDs’ current wishes based on minimal autonomy represented (...) by Jaworska. By rethinking the theoretical and practical challenges of the two positions and their arguments respectively, the paper concludes that in such a scenario, the priority of ADs is morally indefensible, and it is also challenging to establish minimal autonomy defend the moral priority of PWDs’ current wishes. For PWDs whose past values, beliefs, and preferences fade away but who retain apparent intrinsic sentience of well-being, a modified defined quality-of-life approach serves as another reasonable basis in their medical decision-making, and the ADs and the QoL should be further merged to reduce the uncertainty of the grey zone. (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)

Theories of personal identity in the tradition of John Locke and Derek Parfit emphasize the importance of psychological continuity and the abilities to think, to remember and to make rational choices as a basic criterion for personhood. As a consequence, persons with severe dementia are threatened to lose the status of persons. Such concepts, however, are situated within a dualistic framework, in which the body is regarded as a mere vehicle of the person, or a carrier of the brain as (...) the organ of mental faculties. Based on the phenomenology of embodiment, this paper elaborates a different approach to personal identity in dementia. In this perspective, selfhood is primarily constituted by pre-reflective self-awareness and the body memory of an individual, which consists in the embodiment and enactment of familiar habits, practices and preferences. After describing the different types of body memory, the paper develops a phenomenology of dementia as a loss of reflexivity and meta-perspective. This is contrasted with the preservation of individual forms of body memory even in the later stages of the illness. The ethical consequences of an embodied approach to dementia are outlined. A final look is given to narrativistic and constructionist concepts of the self in dementia. (shrink)

There is always a debate around consent in the context of research. Given the expansion of different approaches to qualitative research within dementia care, there is increasing consideration around consent in this context; particularly in research concerning the experiences of living with dementia and the care of persons with dementia. Specifically there is a drive to directly involve persons with dementia as they offer specific expertise concerning living with dementia. Additionally, capacity legislation strengthens the case for ensuring that persons with (...) dementia are actively enabled to make their own decisions for as long as possible. This paper discusses an approach and method that can enable more persons who are living with dementia to participate in some types of research should they want to. Currently, most researchers rely on an extension of the traditional competency-based informed consent method and/or proxy consent or assent. However, related to the development of so-called person-centred and participatory research in dementia, there are now a number of academic publications on approaches and practical methods of ‘inclusionary’ consent. This paper considers the broader contextual influences on inclusionary consent and outlines the key aspects of such approaches based on the development of one specific method for including persons with dementia in consent processes. The method is based on the premise that, for persons with a dementia, informed consent becomes increasingly redundant and consequently exclusionary to them as persons. And even where capacity is said to no longer exist, persons with dementia are often able to make choices and make known their preferences about participating in research where the consent process is made specifically dementia-sensitive. Ethics committees can facilitate researchers both by supporting them when they need to and want to include persons with dementia in gerontological research and by challenging them to ensure that participation is genuine and starts with process consent. (shrink)