We describe a case of an elderly patient suffering from advanced dementia (Mrs. M) whose chronic confusion has become a source of frustration for her caregivers. Mrs. M experiences a touching interaction with a new nurse (Nathan) who takes a different approach with her. We describe this interaction and elaborate upon it by drawing from Catholic social teaching and the philosophy of play. Cases like these do not involve dramatic or esoteric ethical problematics, but rather the sort of dilemma (...) born of the everyday tragedies of lingering illness, aging and caretakers’ fatigue. Nathan’s approach offers a different way of seeing and being with the wearisome patient. (shrink)

Diagnosis of dementia in primary care is both difficult and important. The recommendations by several authors to improve the diagnosis of dementia by general practitioners are important, but insufficient. It is argued that perhaps the disease concept in itself is a cause of confusion for clinicians. Primary care physicians need an adapted procedure, gradually leading to the final diagnosis of dementia. It has to be a stepwise labelling strategy, using global descriptions and non-disease specific labels in the (...) beginning, ending up with well-defined disease criteria. In this process, there is circularity: previous diagnoses have to be kept in mind because symptoms and signs may gradually change during the progression of the disease, leading to reconsideration of previous deleted options. To frame this properly, the primary care physician needs to adopt a broad frail elderly geriatric concept. Implementation of this concept not only helps the diagnostic process, but also stimulates the care for dementing patients and their caregivers. Relevant arguments for early diagnostic involvement of primary care physicians can be put forward on condition that a new concept, adapted procedures and adapted instruments are used. (shrink)

Philosophers have become newly interested in the ethics of sex. One promising feature of this new discussion is that it has been broadening our moral lens to include individuals whose sexual interests have historically been denied or ignored. One such group is the elderly. Contrary to popular belief, many elderly people want to have sex and see it as a regular part of their lives. If society harbors ignorance about or prejudice against elderly sexuality, it harbors stronger views against the (...) sexual expression of elderly people with dementia. People with dementia are often prohibited by nursing‐home staff, sometimes in extreme ways, from having sex with their partners. This prohibition is at least partly motivated by the goal of protecting the vulnerable. However, cutting people with dementia off from sex has negative health effects and is a needless restriction of their autonomy. In this article, I argue that the expanding moral lens in sexual ethics should include the sexual expression of elderly individuals with dementia and that their sexual expression should be respected. Specifically, I argue that many people with dementia are competent to consent to sexual activity with their long‐term partners. (shrink)

The theory of neoteny assumes that adult animals that are higher on the phylogenetic scale retain juvenile characteristics for greater periods of their lifetime. This hypothesis would account for the continuation of curiosity, learning and playfulness in humans and other higher primates in contrast to less evolved mammals. The failure of the neoteny process could result in humans that have lost these juvenile characteristics and lack motivation, curiosity and the capacity to learn freely. These features are indicative of the negative (...) symptoms of dementia praecox, a chronic mental illness that strikes individuals as they become adults.It is postulated that a possible mechanism in the etiology of dementia praecox is the failure of regulator genes to program structural genes to produce enzymes necessary for neoteny. Positive symptoms of the disorder may be conceptualized as the organisms aberrant response to this activation failure. The role of regulator genes in chronic illness may prove a significant avenue for further investigation. (shrink)

How are we to understand dementia? The main argument involves an analysis (in Chapter 2) of intentional mental states, using Wittgenstein's discussion of rule-following, which suggests that such states demonstrate an irreducible, transcendental normativity. This externalist account of intentional mental states highlights the worldly embedding of practices. In Chapters 3,4 and 5, this analysis is applied respectively to the disease, cognitive neuropsychology and social constructionist models of dementia. Whilst clinically and scientifically useful, none generates an adequate account of (...) normativity. The Wittgensteinian analysis supplies a constitutive (as opposed to causal) account that supports the notion of dementia-in-the-world (Chapter 6). A full understanding of dementia requires the human-person-perspective in order to accommodate all that dementia amounts to in the normatively-constrained world. The sub-plot considers our understanding of the person. Rather than the Locke-Parfit view, which stresses psychological continuity, the Wittgensteinian analysis supports the situated-embodied-agent view of the person (Chapters I and 6). This view and the notion of the human-person-perspective are mutually supportive, so that main and subplot both encourage a broader understanding. The works of Wittgenstein have acted as a primary source, with secondary literature commenting on his works. In discussing the models of dementia, I have cited primary sources. I have also considered philosophical works pertinent to the particular models, usually in connection with the mind-brain problem. The thesis concludes that there is no single way to understand dementia, but any understanding will be from the human-person-perspective, in accord with the situated-embodied-agent view and reflecting an externalist construal of intentional psychological states. This has implications for further research in philosophy, medical ethics and gerontology. The unique application of the Wittgensteinian philosophical analysis to clinical reality suggests an approach to people with dementia that stresses personhood in the context of embedded, embodied histories and continuing relationships with others. (shrink)

Dementia is now a leading cause of both mortality and morbidity, particularly in western nations, and current projections for rates of dementia suggest this will worsen. More than ever, cost effective and creative non-pharmacological therapies are needed to ensure we have an adequate system of care and supervision. Music therapy is one such measure, yet to date statements of what music therapy is supposed to bring about in ethical terms have been limited to fairly vague and under-developed claims (...) about an improvement in well-being. This article identifies the relevant sense of wellbeing at stake in the question of dementia therapies of this type. In broad terms the idea is that this kind of therapy has a restorative effect on social agency. To the extent that music arouses a person through its rhythms and memory-inducing effects, particularly in communal settings, it may give rise to the recovery of one's narrative agency, and in turn allow for both carer and patient to participate in a more meaningful and mutually engaging social connection. (shrink)

It is often assumed that it was the alliance between patient associations and neuroscience, which originally made dementia a matter for intervention. In parallel ways, science and technology studies often attributes the power to define and act upon matters of life to biomedicine and science. The concern here is that the science centrism of STS contributes to the dominance of science and biomedicine by granting these analytical privileges. As a result, alternative modes of acting, for instance in care, are (...) disarticulated and made absent. This article mobilizes the sensibilities of anthropology to difference and draws upon excerpts of data from fieldwork in dementia care to show this and argue that there are different practices that act upon life and its limits; that these enact different versions of life and dementia; and that they matter because they shape how people are cared for and live and die with dementia. (shrink)

Dementia is an illness that raises important questions about our own attitudes to illness and aging. It also raises very important issues beyond the bounds of dementia to do with how we think of ourselves as people--fundamental questions about personal identity. Is the person with dementia the same person he or she was before? Is the individual with dementia a person at all? In a striking way, dementia seems to threaten the very existence of the (...) self.LThis book brings together philosophers and practitioners to explore the conceptual issues that arise in connection with this increasingly common illness. Drawing on a variety of philosophers such as Descartes, Lock, Hume, Wittgenstein, the authors explore the nature of personal identity in dementia. They also show how the lives and selfhood of people with dementia can be enhanced by attention to their psychological and spiritual environment. Throughout, the book conveys a strong ethical message, arguing in favor of treating people with dementia with all the dignity they deserve as human beings. The book covers a range of topics, stretching from talk of basic biology to talk of a spiritual understanding of people with dementia. Accessibly written by leading figures in psychiatry and philosophy, the book presents a unique and long overdue examination of an illness that features in so many of our lives. (shrink)

Frontotemporal dementia is a neurodegenerative disease that affects the prefrontal cortex, and impairs various aspects relevant to social cognition. Such impairments can emerge as a visible phenomenon in social interaction and therefore can have very real consequences for those who interact with the afflicted. In this article, I examine how attitudes toward FTD patients are indexed through speech features employed by their interlocutors. I focus on three different speech features typically employed by adults and directed towards subordinates or children: (...) directives, let’s/we framed sequences, and initiation-response-evaluation sequences. These forms are used as strategies to affect and guide FTD patient behaviors, and index how FTD patients are socially constructed as ‘child-like’ and in need of assistance and guidance though not necessarily warranted. Thus, FTD patients may be subject to a diminished status as a result of their social impairments. (shrink)

This article focuses on the elderly patient with a progressive and irreversible dementia, most often of the Alzheimer type. However dementia, the decline in mental function from a previous state, can occur in all ages. For example, if Alzheimer's disease is the dementia of the elderly, increasingly AIDS is the dementia of many who are relatively young. I will not present the major ethical issues relating to dementia care following the progression of disease from the (...) mild to the severe stages, for I have done this elsewhere. Among the issues included are: presymptomatic testing, both psychological and genetic; responsible diag- nostic disclosure and use of support groups; restrictions on driving and other activities; preemptive assisted suicide; advance directives for research and treatment; quality of life in relation to the use of life-extending technologies; and euthanasia. (shrink)

The brain requires sustained interaction with a rich physical and social environment to stay healthy. Individuals without access to such enabling environments and who instead live and grow in disabling environments tend to have greater risk of developing dementia. But research and policymaking as regards dementia risk reduction have so far focused almost exclusively on the role of how individuals’ health behaviors change their risk profile. This exclusive focus on “lifestyle” is both ethically problematic and therapeutically inadequate. I (...) highlight a growing literature on three different kinds of deprivation, an independent and overlooked risk factor for dementia that invites upstream action against inequalities. Future prevention guidelines should include explicit mention of deprivation as a risk factor and be developed around the need to make society fairer. Meanwhile, interventions and discourse based on lifestyle modification should respect the principle of “no ought without support.”. (shrink)

This commentary responds to Samuel Director's article “Dementia and Concurrent Consent to Sexual Relations,” in the May‐June 2023 issue of the Hastings Center Report. In the article, Director sets out a set of conditions for sexual consent after one partner in a committed, long‐term relationship develops dementia. While we share Director's view that dementia patients should not be categorically cut off from sexual intimacy, we caution against the use of his approach as a rigid test for allowing (...) sexual activity. Director's analysis does not address the full range of plausibly permissible sexual relationships, which is unfortunate, as intimacy has consistently been linked to physical and psychological well‐being. Moreover, because decisions about sex often carry moral and emotional overtones, we propose that a dementia patient's prior values should sometimes be considered by caregivers in a measured way. (shrink)

Jennifer Blumenthal-Barby (2024) has called for bioethics to end talk about personhood, asserting that such talk has the tendency to confuse and offend. It will be argued that this has only limited application for (largely) private settings. However, in other settings, theorizing about personhood leaves a gap in which there is the risk that the offending concept will get uptake elsewhere, and so the problem Blumenthal-Barby nominates may not be completely avoided. In response to this risk, an argument is presented (...) in support of the idea that the role of philosophers and bioethicists, far from ending talk of personhood, ought to be to clarify the concept, and to do so in nuanced ways, given its application for specific kinds of impairments. The case of dementia is used to illustrate this in the context of person-centered care. Ironically, given the stigma attached to dementia, far from the need to end talk of personhood, bioethicists are needed to rescue the concept and clarify its role. (shrink)

Sexual activity between spouses in long-term care settings has received increasing attention recently. This article considers the special case of sexual activity between spouses in long-term care when one spouse has dementia. The complex and interrelated issues of aging, sexuality, and dementia are reviewed, first through examination of a recent court case. Then, issues of sexuality and aging, assessment of capacity and competency in dementia, and institutional responses to these situations are considered in light of Catholic bioethical (...) tradition. The argument is made that Catholic long-term health care facilities ought to proactively address these issues, and some concrete suggestions are offered to address clinical care and risk management in these settings. (shrink)

During its 2018–2019 term, the United States Supreme Court considered the constitutionality of executing a prisoner with dementia. In Madison v. Alabama, the Court ruled that, in certain circumstances, executing a prisoner with dementia violates the Eighth Amendment’s ban on cruel and unusual punishment. Vernon Madison was sentenced to death for killing a police officer in 1985. After many years on Alabama’s death row, he had a series of strokes and was diagnosed with vascular dementia. In 2016, (...) Madison’s lawyers unsuccessfully sought a stay of execution, arguing that, in light of his cognitive impairments, imposing the death penalty would violate the Constitution. After Alabama set a 2018 execution date, lawyers returned to the state court, arguing that the finding of competence should be reversed because Madison’s cognitive impairments had worsened. When the trial court refused to grant the stay of execution, Madison’s lawyers asked the Supreme Court to review the constitutionality of the state court decision. (shrink)

Due to the severe impairments in intra- and interpersonal interaction and communication, dementia will be hypothesized as a social disorder. Despite the increasing societal relevance of dementia this aspect is surprisingly under-researched in phenomenological philosophy. First, the symptomatic disturbance of the dynamic relationship between orientation, language and memory in Alzheimer’s Dementia (AD) is analyzed with the tools of a phenomenological psychopathology in terms of a lifeworld account. Due to the severe impairments of AD, two therapeutic strategies are (...) discussed: first, the situation-specific strategy, which examines communication resources in the here and now in the face-to-face situation; second, the context-specific strategy, which examines whether habitūs can soften the disruption of contextual knowledge by making it accessible as a resource of meaning that informs and thus orients the here and now. The guiding question of this enquiry is how AD changes the social experience in intra- and interpersonal terms. (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)

This essay argues that suffering in persons with dementia is more than a matter of personal experience. It is knowable by others and does not need to rely on the reports of the patient to affirm it. It is even possible for a person to claim not to be suffering—“I’m doing fine”—but for others to conclude to the contrary—“You are suffering.” A key property of this objective account is the caregiver observes the suffering. This observation is a product of (...) the work of caregiving and this work relies on perceiving and supporting the mind of the person living with dementia. When that work of mind support is successful, it creates a feeling of being at home. When it is not, suffering ensues. (shrink)

As Heintz & Scott-Phillips rightly argued, pragmatics has been too commonly considered as a supplement to linguistic communication. Their aim to reorient the study of cognitive pragmatics as the foundation of many distinctive features of human behavior finds echo in the neuropsychological literature on tool use, in which the investigation of semantic dementia challenges the classical semantics versus pragmatics dissociation.

Sexual self-determination is considered a fundamental human right by most of us living in Western societies. While we must abide by laws regarding consent and coercion, in general we expect to be able to engage in sexual behaviour whenever, and with whomever, we choose. For older people with dementia living in residential aged care facilities (RACFs), however, the issue becomes more complex. Staff often struggle to balance residents' rights with their duty of care, and negative attitudes towards older people's (...) sexuality can lead to residents' sexual expression being overlooked, ignored, or even discouraged. In particular, questions as to whether residents with dementia are able to consent to sexual activity or physically intimate relationships pose a challenge to RACF staff, and current legislation does little to assist them. This paper will address these issues, and will argue that, while every effort should be made to ensure that no resident comes to harm, RACFs must respect the rights of residents with dementia to make decisions about their sexuality, intimacy and physical relationships. (shrink)

The moral authority of advance directives (ADs) in the context of persons living with dementia (PLWD) has sparked a multifaceted debate, encompassing concerns such as authenticity and the appropriate involvement of caregivers. Dresser critiques ADs based on Parfit's account of numeric personal identity, using the often‐discussed case of a PLWD called Margo. She claims that dementia leads to a new manifestation of Margo emerging, which then contracts pneumonia. Dworkin proposes that critical interests, concerning one's higher moral values, trump (...) experiential interests (things or activities one enjoys because they are pleasurable). Dresser argues that Margo's current experiential interests override her self's critical ones, as they contribute significantly to her quality of life (QoL). To render the argument more realistic, I introduce a variation in which Margo develops delirium, a common and severe comorbidity in PLWD. I argue that delirium could precipitate a sudden decline in experiential interests and, consequently, a deterioration in QoL. Given the uncertain trajectory of Margo's illness, I contend that her competent self's critical interests, as reflected in her AD, along with her right to self‐ownership, should take precedence over current experiential interests. Thus, the AD possesses moral authority. However, it is imperative for healthcare professionals to offer consultations for PLWD, facilitating an understanding of ADs and enabling a shared decision‐making process. Such consultations are essential for honouring the autonomy and dignity of PLWD, ensuring that their values and preferences guide ethical decision‐making amidst the complexities of dementia care. (shrink)

Dementia is dead, long live aging! This chapter sets out the philosophical sources for understanding working with "dementia." The concept, "dementia," serves no useful purpose. Even "Alzheimer's disease" turns out to be problematic. This is because there is a lack of precision around the boundaries of these notions. The messiness that surrounds these notions, in terms of facts and values, is made obvious when we consider mild cognitive impairment, which is said to be a pre-dementia state. (...) It makes more biological sense to think in terms of the ageing brain, rather than to search for discrete disease entities. We need to think in terms of dementia-in-the-world. Ageing is not something that we do solely at the end of our lives: it is a part of our lives, to be celebrated. We must look more broadly at dementia-in-the-world as a feature of our ageing lives. (shrink)

Frontotemporal dementia is a young-onset neurodegenerative dementia that primarily affects social behaviors. This paper examines the use of repetitional responses in FTD discourse, finding that patients often use repeats to assert agency or epistemic authority. For example, repetitional responses are often used by patients to exert some autonomy when their interlocutors display a belief about the patients’ lack of knowledge about basic functioning. FTD has been associated with echolalia, the meaningless use of repetition; however, this analysis shows that (...) the use of repetitional responses in FTD discourse can be meaningful and thus suggests that, at least in early stages of the dementia, echolalia is not always an accurate characterization of FTD patients’ use of repetitional responses. (shrink)

Dementia patients in the moderate-late stage of the disease can, and often do, express different preferences than they did at the onset of their condition. The received view in the philosophical literature argues that advance directives which prioritize the patient’s preferences at onset ought to be given decisive moral weight in medical decision-making. Clinical practice, on the other hand, favors giving moral weight to the preferences expressed by dementia patients after onset. The purpose of this article is to (...) show that the received view in the philosophical literature is inadequate and is out of touch with real clinical practice. I argue that having dementia is a cognitive transformative experience and that preference changes which result from this are legitimate and ought to be given moral weight in medical decision-making. This argument ought to encourage us to reduce our confidence in the moral weight of advance directives for dementia patients. (shrink)

Persons with dementia often prefer to participate in decisions about their health care, but may be prevented from doing so because healthcare decision-making law facilitates use of advance directives or surrogate decision makers for persons with decisional impairments such as dementia. Federal and state disability law provide alternative decision-making models that do not prevent persons with mild to moderate dementia from making their own healthcare decisions at the time the decision needs to be made. In order to (...) better promote autonomy and wellbeing, persons with dementia should be accommodated and supported so they can make their own healthcare decisions. (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)

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)

The concept of person‐centeredness has become in many instances the standard of health care that humanises services and ensures that the patient/client is at the centre of care delivery. Rejecting a purely biomedical explanation of dementia that led to a loss of self, personhood in dementia could be maintained through social interaction and communication. In this article, we use the insights of queer theory to contribute to our current understanding of the care of those with dementia. We (...) critically discuss the concepts of person and personhood that have become the cornerstone values of person‐centred care for persons with dementia (PWD). Some critics, using queer theory as a theoretical approach, contend that person‐centred care often (unwittingly) reproduces heteronormative roles in trying to sustain life histories. In doing so, they argue, regendering of PWD is sometimes enforced by care providers who try to safeguard this biographical continuity. Cultural theorist Linn Sandberg also mentions that other axes of domination such as race and class are not conceptualised in person‐centeredness approaches, and neither are power asymmetries. Thus, in our article, we revisit the concept of person‐centred care as a first step in proposing another way to think about ‘beings with dementia’ (to avoid the term person). Believing that queer theorists have fallen short in questioning the idea of person or personhood as such, we will build on and broaden Sandberg's critique by demonstrating that queer and crip theory can be understood as a fundamental critique of the (Western) subject and processes of subjectivation. We argue that dementia can be conceptualised as a radical break not only with gendered roles and embodiments, but with many of the norms that make us recognisable subjects. Conceptualising dementia in this way turns it into what Sandberg called an ‘emancipatory space’ and not merely a pathology. (shrink)

Philosophers concerned with what would be good for a person sometimes consider a person’s past desires. Indeed, some theorists have argued by appeal to past desires that it is in the best interests of certain dementia patients to die. I reject this conclusion. I consider three different ways one might appeal to a person’s past desires in arguing for conclusions about the good of such patients, finding flaws with each. Of the views I reject, the most interesting one is (...) the view that prudential value is, at least partly, concerned with the shape of a life as a whole. (shrink)

According to Kant’s ethics, at least on one common interpretation, persons have a special worth or dignity that demands respect. But personhood is not coextensive with human life; for example, individuals can live in severe dementia after losing the capacities constitutive of personhood. Some philosophers, including David Velleman and Dennis Cooley, have suggested that individuals living after the loss of their personhood might offend against the Kantian dignity the individuals once possessed. Cooley has even argued that it is morally (...) required on Kantian grounds for those who realize that they will lose their personhood as a result of dementia (e.g. Alzheimer’s) to hasten their deaths (e.g. commit suicide). This article specifies circumstances in which post-personhood living might indeed involve an affront to the Kantian dignity of a person who once was. However, the article contends, Kant implies that it is neither morally required nor even morally permissible for someone in an early stage of Alzheimer’s to hasten their death to avoid such an affront, even if they have autonomously chosen to do so. The article adds an ethical perspective to debate on physician-assisted dying, in particular on the moral permissibility of the soon-to-be-demented ending their lives. (shrink)

This article identifies the assumption of responsibility as a basic need of human beings and applies the concept specifically to older people with dementia or Alzheimer's disease. It suggests a two‐level concept of responsibility, based on the approach of discourse ethicist Karl‐Otto Apel, as a promising approach to recognizing human diversity while at the same time respecting people's equal rights to participate in discourse. This concept can serve as a theoretical starting point for the construction of individually adapted types (...) of responsibility. Furthermore, the article describes practical ideas (primarily the practice of doll therapy) that can enable people with dementia or Alzheimer's disease to assume responsibility. Direct communication and a reflective, sensitive consideration of each individual case are identified as important prerequisites for the inclusion of elderly people with dementia. (shrink)

This article is designed to explore and examine the key components of communication that emerged during the interactional analysis of a role play that took place in the classroom. The ‘actors’ were nurses who perceived the interaction to reflect an everyday encounter in a hospital ward. Permission to tape the interaction was sought and given by all persons involved. The principal ‘players’ in the scenario were: the patient, a 70-year-old-woman who had been admitted with dementia, her son and daughter, (...) and the nurse in charge of the ward. The fundamental dynamics of the use of power and restriction, truth telling, family stress, interpersonal conflict, ageism, sexism, empathy and humanism surfaced during the analysis. The findings show that therapeutic communication should be the foundation on which nursing should stand. The article continues with an exploration of the theoretical frameworks that guided the analysis of interaction and concludes by suggesting tentatively some meaningful implications for nursing practice. It plans to furnish provocative new insights into the sometimes covert communication dynamics occurring within the nurse-patient relationship. Finally, it aims to generate discussion on this little-charted realm of human social interaction. (shrink)

In this article, I explore how methods of investigation can allow us either to appreciate the intact cognitive and social abilities of people with Alzheimer’s disease or unwittingly obscure those same abilities. Specifically, I shall assert that (1) the biomedical- quantitative approach, while being generally appropriate for drug efficacy studies, does not allow us to appreciate the many significant strengths possessed by people diagnosed with dementia, (2) qualitative/narrative approaches do so admirably, and (3) understanding the cognitive and social strengths (...) of people diagnosed is of paramount importance for developing optimal care giving approaches and reveals strikingly the shared humanity of those diagnosed with dementia and those deemed healthy. (shrink)

This conversation analytic study investigates how couples manage conflicting knowledge claims when one of the persons has dementia. The data are video-recordings of 16 couples talking with a third party. The analysis focuses on the negotiation of epistemic rights, more precisely how partners initiate repair and correct claims made by the PWD on matters belonging to the latter’s epistemic domain. We identified three main practices for correcting the PWD: correcting the statement, thereby claiming epistemic authority for oneself and denying (...) it to the PWD, inviting the PWD to self-correct, thereby attributing some epistemic authority to the PWD, and disagreeing and providing reasons for one’s alternative claim, establishing a more symmetric epistemic gradient. The PWDs responses to the corrections displayed different degrees of acceptance, ranging from self-denigration to resistance and insistence. (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)

People who have a particular behavioural variant of Frontotemporal Dementia (bvFTD) suffer from a puzzling early set of symptoms. They appear to caregivers to cease to care about things that they did before, without manifesting certain other significant deficits that might be expected to accompany this change. Are subjects with bvFTD appropriate objects of reactive attitudes like resentment and indignation that seem to presuppose responsible agency? I explore two possible routes to answering this question in the negative that both (...) appeal to the role of the capacity to care in accounts of responsible agency. The first appeals to the capacity to care as fundamental in determining the aptness of moral demands and appraisals; the second appeals to the capacity to care as required for the very possibility of being someone who could in principle receive deserved praise or blame. In order to assess these lines of reasoning, it will be necessary to settle on a plausible account of caring, and the case of subjects with bvFTD can help in illuminating the relevant capacities. I suggest that the two routes, when clarified, are promising, but that interesting questions about the nature of desert and its relationship to caring remain open. (shrink)

This essay discusses the use of analogies drawn from the Holocaust in cultural representations and critical scholarship on dementia. The paper starts with a discussion of references to the death camp in cultural narratives about dementia, specifically Annie Ernaux’s account of her mother’s dementia in I Remain in Darkness. It goes on to develop a critique of Italian philosopher Giorgio Agamben’s work on biopolitics and “bare life,” focusing specifically on the linguistic foundations of his thinking. This underpins (...) a consideration of the limitations of his philosophy and ontologically derived notions of weakness and passivity in imagining life with dementia as a potential site of agency or as the locus for transformative ideas about care, community, and non-instrumentalist conceptions of human value. (shrink)

When people develop dementia, their ability to make important decisions recognized by law—such as to change an estate plan, make a large purchase, or get married or divorced—is increasingly comprom...

Recent outbreaks in Australia and the detection of more virulent SARS‐CoV‐2 strains suggest that Covid‐19 is not yet over. In July 2021, three states in Australia were in lockdown as a result of community transmission of the Delta variant. Despite being effective at mitigating outbreaks, lockdowns could have adverse effects on the elderly and people with dementia. This commentary reviews general lockdown and aged‐care lockdown policies in Victoria, New South Wales, and South Australia and highlights how these could affect (...) the well‐being of people with dementia and their caregivers. Drawing from literature on Covid‐19 and dementia, this commentary provides pragmatic recommendations on how to consider the well‐being of people with dementia and their care providers in Covid‐19 management policies. (shrink)

Children and adults with dementia are vulnerable populations. Both groups are also relatively seldom included in biomedical research. However, including them in clinical trials is necessary, since both groups are in need of scientific innovation and new therapies. Their dependence and limited decision‐making capacities increase their vulnerability, necessitating extra precautions when including them in clinical trials. Beside these similarities there are also many differences between the groups. The most obvious one is that children have an entire life ahead of (...) them and will become persons with certain ideals and preferences, while adults with dementia have lived a life in which they have expressed their ideals and preferences. Some of the available research guidelines recognize these differences, setting one list of specific requirements for groups of incapacitated adults and another list for children. Other documents, however, do not differentiate and only set requirements for subjects unable to consent as a single category of subjects.In this article we analyse to what extent the similarities and differences between the two groups are represented in legal documents and ethical guidelines. The article presents an overview and an analysis of the requirements for doing research with children and dementia patients. We conclude with suggestions about how to better incorporate the morally relevant aspects of these two groups in legislation and ethical guidelines. (shrink)

Sex and dementia is becoming an increasingly important topic in applied ethics. By the year 2030, more than 74.7 million people are expected to be diagnosed with dementia worldwide; many of these people may want to engage in sex. The question of how to manage cases of sex and dementia is occurring more frequently in practical cases because of our aging population. The primary reason that sex and dementia is ethically complex is because sexual consent is (...) both legally and morally significant, yet many people with dementia may be unable to consent in accordance with current standards. In this dissertation, I introduce three frameworks that could be used to approach cases of sex and dementia. The first framework is that of relational autonomy and supported decision-making; this framework tries to enable people with dementia to make autonomous sexual decisions with support. The next approach is a framework of advance sexual consent, which considers the relevance of prior autonomous sexual decisions. The third framework focuses on prioritizing well-being above a person’s capacity to make autonomous decisions and to consent to sex. I assess each framework and consider their positive and negative nuances. The overall goal is to balance the right to sexuality while at the same time protecting people with dementia from undue harm. Ultimately, this dissertation shows that cases of sex and dementia ought to be managed on a case-by-case basis; one framework will not work for every context. In order to approach situations on a case-by-case basis, I contend that a process of weighing and balancing norms and principles is necessary. I use Beauchamp and Childress’s method of weighing and balancing to propose a systematic procedure. This process takes various factors into account in order to determine how to proceed in an ethically defensible manner. According to an approach of weighing and balancing, sexual acts would not be immediately barred based on a person’s inability to consent; rather, a person’s present convictions, the sexual activity to which they want to participate, the possibility of experiencing undue harm, their prior wishes and values, their capacity to make autonomous decisions with support, etc. would all be considered. Overall, this dissertation contributes to the complex topic of sex and dementia and offers a starting point for further discussion on how to approach these cases in practice. (shrink)