We examine the concept of personhood in relation to people living with dementia and implications for the humanity of care, drawing on a body of ethnographic work. Much debate has searched for an adequate account of the person for these purposes. Broad contrasts can be made between accounts focusing on cognition and mental faculties, and accounts focusing on embodied and relational aspects of the person. Some have suggested the concept of the person is critical for good care; others suggest the (...) vexed debates mean that the concept should be abandoned. We argue instead that the competing accounts illuminate the very tensions in personhood which are manifest for all of us, but especially for people living with dementia, and argue that our account has explanatory power in shedding light on how precisely dehumanisation and constraints on agency may arise for people living with dementia, and for staff, within an institutional context. (shrink)

If you developed Alzheimer disease, would you want to go all the way to the end of what might be a decade‐long course? Some would; some wouldn't. Options open to those who choose to die sooner are often inadequate. Do‐not‐resuscitate orders and advance directives depend on others' cooperation. Preemptive suicide may mean giving up years of life one would count as good. Do‐it‐yourself methods can fail. What we now ask of family and clinicians caring for persons with dementia, and of (...) patients given no better option than to go on with lives they may not want, is unacceptable. To explore how one might better control one's own dying and avoid burdening others with overwhelming care and morally painful choices, we propose a thought experiment: an advance directive implant that would enable persons with early dementia, while competent, to arrange their own deaths without the subsequent intervention of anyone else. (shrink)

En este artículo presento una clasificación de las teorías éticas acerca del aborto provocado. En esa clasificación utilizo dos criterios que, aunque inseparables, se pueden tratar relativamente disociados uno del otro. En primer lugar, presento las teorías ordenadas según el estatuto ontológico y ético que otorgan a los gametos, cigotos, preembriones, embriones, fetos y neonatos, y discuto las teorías basadas en la idea de potencialidad. En segundo lugar, me refiero a las teorías centradas en la libertad de la madre. En (...) las consideraciones finales reconozco explícitamente el partidismo de la teoría de teorías propuesta. (shrink)

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)

I develop Tetsurō Watsuji’s relational model of the self as “betweenness”. I argue that Watsuji’s view receives support from two case studies: solitary confinement and dementia. Both clarify the constitutive interdependence between the self and the social and material contexts of “betweenness” that define its lifeworld. They do so by providing powerful examples of what happens when the support and regulative grounding of this lifeworld is restricted or taken away. I argue further that Watsuji’s view helps see the other side (...) of this deprivation, how reconstructing aspects of betweenness is, at the same time, a reconstruction of the self. I conclude by briefly indicating further consequences of this view. (shrink)

Reading Grant Gillett (2009) is a bit like watching a supreme tightrope artist: his balance is always impeccable and his footing sure; and yet one cannot help occasionally holding one's breath. Ove...

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...

The phrase ‘person‐centred care’ (PCC) reminds us that the fundamental philosophical goal of caring for people is to uphold or promote their personhood. However, such an idea has translated into promoting individualist notions of autonomy, empowerment and personal responsibility in the context of consumerism and neoliberalism, which is problematic both conceptually and practically. From a conceptual standpoint, it ignores the fact that humans are social, historical and biographical beings, and instead assumes an essentialist or idealized concept of personhood in which (...) a person is viewed as an individual static object. From a practical standpoint, the application of such a concept of personhood can lead to neglect of a person's fundamental care needs and exacerbate the problems of social inequity, in particular for older people and people with dementia. Therefore, we argue that our understanding of PCC must instead be based on a dynamic concept of personhood that integrates the relevant social, relational, temporal and biographical dimensions. We propose that the correct concept of personhood in PCC is one in which persons are understood as socially embedded, relational and temporally extended subjects rather than merely individual, autonomous, asocial and atemporal objects. We then present a reconceptualization of the fundamental philosophical goal of PCC as promoting selfhood rather than personhood. Such a reconceptualization avoids the problems that beset the concept of personhood and its application in PCC, while also providing a philosophical foundation for the growing body of empirical literature that emphasizes the psychosocial, relational, subjective and biographical dimensions of PCC. (shrink)

A persistent question in discussions of the ethics of advance directives for euthanasia is whether patients who go through deep psychological changes retain their identity. Rather than seek an account of identity that answers this question, I argue that responsible policy should directly address indeterminacy about identity directly. Three sorts of indeterminacy are distinguished. Two of these—epistemic indeterminacy and metaphysical indeterminacy—should be addressed in laws/policies regarding advance directives for euthanasia.

Unsere Sicht der Demenz ist von kulturellen Metaphern geprägt. Sie ziehen Analogien zu vertrauten Erfahrungsbereichen und eröffnen so ein Verständnis von einem ansonsten schwer fassbaren und letzten Endes unergründlichen Geschehen. In zeitgenössischen Diskursen über die Demenz spielen insbesondere zwei biographische Metaphern eine maßgebliche Rolle: die der,Rückkehr in die Kindheit‘ und die des,Todes bei lebendigem Leib‘. Der Beitrag unterzieht beide Vorstellungen einer kritischen Reflexion. Er erläutert zunächst die kulturgeschichtliche Herkunft und Bedeutung der Kindheits- und Todesmetapher. Im Anschluss geht er ihren Implikationen (...) für das Verständnis von Demenz und die Einstellungen und Verhaltensweisen gegenüber den Betroffenen nach. Dabei kommt eine Lebensverlaufsperspektive zum Tragen, die die Bedeutung der zeitlichen Erstreckung und Verlaufsstruktur des menschlichen Lebens für die ethische Theoriebildung systematisch zu berücksichtigen sucht. Auf diese Weise lässt sich verdeutlichen, dass beide Metaphern die Altersdemenz letztlich einem anderen Punkt des menschlichen Lebens angleichen und sie damit in je unterschiedlicher Weise als eine Art biographischer Normabweichung auffassen. Die Auseinandersetzung erlaubt Schlussfolgerungen mit Blick auf medizin- und pflegeethische Debatten um Selbstbestimmung, Stellvertreterentscheidungen und Vorausverfügungen im Kontext der Altersdemenz. Auf einer theoretisch-konzeptionellen Ebene verdeutlicht sie darüber hinaus auch die Bedeutung einer biographie- und kultursensiblen Perspektive für die ethische Theoriebildung im Allgemeinen. (shrink)

This contribution sets out to criticize the prominent metaphor of “death while alive” in the context of dementia. We first explain the historical origin and development as well as the philosophical premises of the image. We then take a closer look at its implications for understanding dementia and societal attitudes and behaviours towards those affected. In doing so, we adopt a life course perspective that seeks to account for the ethical significance of the temporal extension and structure of human life. (...) According to this perspective, individual existence in time is characterized by normative standards of age-appropriate behavior, evaluative standards of a good life, and teleological notions of successful development which require theoretical analysis and ethical discussion. Such a perspective can contribute significantly to spelling out the implications of the metaphor of death while alive and to criticizing their problematic aspects. Indeed, it makes clear that this metaphor aligns dementia with a different point in the human life course, thus ultimately framing it as a kind of deviation from the biographical norm, a disruption in an assumed temporal order of existence. At the same time, the life course perspective can help to understand why this conception involves ethically problematic distortions and blind spots. The resulting considerations allow conclusions with regard to medical and care ethical debates about self-determination, surrogate decision making, and advance directives in the context of dementia. Furthermore, on a theoretical-conceptual level, they also illustrate the importance of a biography- and culture-sensitive approach to philosophical and ethical reasoning in biomedicine and the life sciences. (shrink)

In African philosophical literature, and especially in Afro-communitarianism, there are discussions about the value of the relationship an individual has with her respective community. By community, reference is made to the metaphysical holistic view of community which includes all beings in nature. But since the article deals with gender, which is a social construction, most of the arguments appeal to a narrower version of community, that of human beings. Therefore, discussions about “value” refer to the value that is given to (...) the relationship that surpasses any individual value, and it applies or appeals to human beings. One implication of this understanding and the prioritisation of the relationship is that identity is something that is conferred by this sort of relationship. In this article, we argue that this way of understanding “identity” from an Afro-communitarian world view has something to offer in understanding or conceptualising gender(ed) identity(ies). The assumption is that gender identity will be understood as socially conferred and most importantly, one that takes community as essential. (shrink)

There are two contrasting views on the decision-making for life-sustaining treatment in advanced stages of dementia when the patient is deemed incompetent. One is to respect the patient's precedent autonomy by adhering to advance directives or using the substituted judgement standard. The other is to use the best-interests standard, particularly if the current judgement on what is best for the incapacitated patient contradicts the instructions from the patient's precedent autonomy. In this paper, I argue that the protracted clinical course of (...) dementia over many years requires the extended perspective of a progressive decision-making process—extended in both social space and time. The ongoing debate between these two competing views has missed this perspective by focussing on an exclusive disjunction between the competent former self and the incompetent current self. Drawing on theories of situated cognition in cognitive science, I will show that the cognition of a demented patient can be viewed as extended and embodied by her supportive social environment. As the disease progresses, the content of the mind of a demented person becomes partially constituted by such external resources along with her diminishing intrinsic mind. With this understanding, medical decision-making for a demented patient can be construed as a temporally and socially extended practice. A collective decision-making body consisting of the patient, her family and surrogates, and the clinician, should make progressive decisions as a whole over years of the disease course. Finally, I will provide a practical example of how this proposal can be applied in clinical practice. (shrink)

A prominent view on personal identity over time, Jeff McMahan’s ‘Embodied Mind Account’ (2002) holds that we cease to exist only once our brains can no longer sustain the basic capacity to uphold consciousness. One of the many implications of this view on identity persistence is that we continue to exist throughout even the most severe cases of dementia, until our consciousness irreversibly shuts down. In this paper, I argue that, while the most convincing of prominent accounts of personal identity (...) over time, McMahan’s account faces serious challenges in explanatory power of dementias and related neurodegenerative conditions. Particularly, this becomes visible in the face of emerging methods for neural tissue regeneration, and the possibility of ‘re-emerging patients’. I argue that medical professionals’ neglecting qualitative aspects of identity risks resulting in grave misunderstandings in decision-making processes, and ethically objectionable outcomes in future practices. Finally, I propose revisions which could potentially salvage the great benefits that Embodied Mind Theory still can bring to the field of dementia care in terms of understanding life, death, and identity across the lifespan. (shrink)

Background For a variety of sociological reasons, different types of centredness have become important in health and social care. In trying to characterize one type of centredness, we were led to consider, at a conceptual level, the importance of the notion of centredness in general and the reasons for there being different types of centeredness. Method We searched the literature for papers on client-, family-, patient-, person- and relationship- centred care. We identified reviews or papers that defined or discussed the (...) notions at a conceptual level. The reviews and papers were analyzed as text transcripts. Results We identified 10 themes that were common to all the types of centredness. At a conceptual level we could not identify thematic differences between the types of centredness. These findings were subjected to a philosophical critique using ideas derived from Wittgenstein. Conclusion Different types of centredness are required in different contexts. The differences are justified by their practical utility. The unifying themes of centredness, however, reflect a movement in favour of increasing the social, psychological, cultural and ethical sensitivity of our human encounters. (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)

One goal of this paper is to argue that autobiographical memories are extended and distributed across embodied brains and environmental resources. This is important because such distributed memories play a constitutive role in our narrative identity. So, some of the building blocks of our narrative identity are not brain-bound but extended and distributed. Recognising the distributed nature of memory and narrative identity, invites us to find treatments and strategies focusing on the environment in which dementia patients are situated. A second (...) goal of this paper is to suggest various of such strategies, including lifelogging technologies such as SenseCams, life story books, multimedia biographies, memory boxes, ambient intelligence systems, and virtual reality applications. Such technologies allow dementia patients to remember their personal past in a way that wouldn’t be possible by merely relying on their biological memory, in that way aiding in preserving their narrative identity and positively contributing to their sense of well-being. (shrink)

Resident-to-resident aggression is quite prevalent in long-term care settings. Within popular and empirical accounts, this form of aggression is most commonly attributed to the actions of an aberrant individual living with dementia characterized as the “violent resident.” It is often a medical diagnosis of dementia that is highlighted as the ultimate cause of aggression. This neglects the fact that acts of aggression are influenced by broader structural conditions. This has ethical implications in that the emphasis on individual aberration informs public (...) policy strategies for prevention with a focus on restricting the freedom of individuals using behavioural modification, drugs, or other restraints with the intent to protect others from harm. A more ethical approach requires attention to the structural conditions of long-term care that both foster aggression and constrain prevention efforts. To this end, we turn to a model of relational citizenship that offers a theory of embodied selfhood and relationality as essential to human dignity, thus entailing human rights protections. The application of an ethic based on this model offers a more holistic prevention strategy for resident-to-resident aggression by drawing attention to the critical need and obligation to promote human flourishing through system level efforts. (shrink)