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)

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)

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)

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)

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)

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)

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)

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)

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)

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)

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)

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)

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)

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)

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)

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)

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)

Ronald Dworkin introduced the example of Margo, who was so severely demented that she could not recognise any family or friends, and could not remember anything of her life. At the same time, however, she seemed full of childish delight. Dworkin also imagines that, before her dementia, Margo signed an advance refusal of life-saving treatment. Now severely demented, she develops pneumonia, easy to treat, but lethal if untreated. Dworkin argues that the advance refusal ought to be heeded and Margo (...) be allowed to die of that pneumonia, on the basis that the prior refusal expresses her true wishes. In this paper I want to challenge Dworkin’s understanding of identity and his conclusion about advance refusals, and I develop my argument in two directions. First, I argue that the demented Margo is not some ‘lesser’ version of the ‘true’ Margo, but instead that the present Margo’s wishes should take precedence over those of the past Margo, on the grounds that all of us are entitled to change our minds. Second, I argue for a stronger role for friends and family members in sustaining the demented Margo’s identity through her years of decline. Based on this, I argue for a presumption against the advance refusal, but I allow that in extreme cases, a friend might have the authority to demand that it be heeded. (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)

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)

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)

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)

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)

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)

Alzheimer's disease remains the most common form of dementia. Dementia symptoms vary depending on individual personality, life experience, and social and cultural influences. As dementia progresses, involvement of multi-disciplinary health care professionals is needed to manage the disease. Alzheimer research is progressing rapidly. While 5% of all Alzheimer's disease may be genetically determined, the majority is not. Susceptibility genes can reveal the risk of contracting Alzheimer's disease. Early life risk factors such as education, nutrition, and vascular disease (...) may increase the likelihood of dementia in later life. In the United States, two acetylcholinesterase inhibitors have been approved as cognitive enhancers. Possible prevention and symptomatic treatment interventions have focused on estrogen replacement therapy, antioxidants, and anti-inflammatory medications. Research advances have improved the clinical management of dementia. Ethical implications to the patient, family, and society are multiple and remain challenging. (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)

The law regulating euthanasia in Spain establishes that individuals without decision-making capacity are eligible for assisted dying if they have previously signed anadvance directive and meet the criteria of an “euthanasic context”. This article aims toexpose a vulnerability in the handling of assisted dying requests in Spain, particularlyconcerning individuals with dementia. To address this, we will examine the requirements for requesting euthanasia both with and without advance directives and compare Spain’s legal framework for advance directives with that of other (...) countries.Subsequently, we will present two types of arguments: one negative (as the directiveshelp prevent certain harmful circumstances) and one positive (as they promote desirable situations), which underscore the vital importance of implementing changes in theuse of advance directives to request euthanasia in cases of dementia. (shrink)

This is a case study of an ethical dilemma concerning the appropriateness of encouraging care-staff, working within a dementia care home, to either wear a clinical uniform or not to wear a clinical uniform in practice. It is proposed that people living with dementia may sustain higher levels of wellbeing if care-staff wear clothes that are more akin to their care home environment, for example, wearing similar clothes to the residents or even wearing pyjamas and nightwear during a (...) night shift. The counter argument is that the practice may lead to greater levels of distress due to disorientation, increased potential for infection and inability to identify nurses when needed. (shrink)

Many people are worried about developing dementia, fearing the losses and burdens that accompany the condition. Dementia‐specific advance directives are intended to address dementia's progressive effects, allowing individuals to express their treatment preferences for different stages of the condition. But enthusiasm for dementia‐specific advance directives should be tempered by recognition of the legal, ethical, and practical issues they raise. Dementia‐specific advance directives are a simplistic response to a complicated situation. Although they enable people to register (...) their future care preferences, in many cases, those preferences will not, and should not, determine their later care. (shrink)

Social death is apparent when people are considered unworthy of social participation and deemed to be dead when they are alive. Some marginalized groups are more susceptible to this treatment than others, and one such group is people with dementia. Studies into discrimination towards older people are well documented and serve as a source of motivation of older people’s social movements worldwide. Concurrently, theories of ageing and care have been forthcoming in a bid to improve the quality of responses (...) to older people in times of need. Included in this theorizing has been the analysis of values and approaches that paid carers convey to citizens who require their help. In this article, the values and approaches of social workers and mental health nurses bring to people with dementia are considered within the context of social life and social death. It is based on a small study that undertook to critically examine how participation of people with dementia was facilitated. A thanatological lens was used to interpret inclusive and exclusive practices which potentially create opportunity for participation or reinforce the loss of citizenship for older people with dementia. (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)

Memory is a complex phenomenon, so the loss of memory that occurs in dementia is equally complex. Accounts that deny personhood to dementia sufferers typically fail to accommodate that complexity.

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. This 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, Locke, 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 psychosocial and spiritual environment. Throughout, the book conveys a strong ethical message, arguing in favour 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)

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

The introduction of portable MRI (pMRI) has the potential to directly impact dementia research and ultimately clinical care. In this paper, we explore two ethical challenges facing the introduction of pMRI in dementia research. The first is the need to ensure that pMRI enhances rather than undermines efforts aimed at improving ethnoracial representation in dementia research. The second is the need to implement pMRI in dementia research in a dementia-friendly way that attends to the social (...) context and lived experience of people with dementia. (shrink)

This essay takes a close look at a species of care that is particularly needed by people with progressive dementias but that has not been much discussed in the bioethics literature: the activity of holding the person in her or his identity. It presses the claim that close family members have a special responsibility to hold on to the demented person's identity for her or him, and offers some criteria for doing this morally well or badly. Finally, it considers how (...) even those with dementia can hold others in their identities, and suggests that this kind of holding too can have great moral worth. (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 a topic of enormous human, medical, economic, legal and ethical importance. Its importance grows as more of us live longer. The legal and ethical problems it raises are complex, intertwined and under-discussed. This book brings together contributions from clinicians, lawyers and ethicists – all of them world leaders in the field of dementia – and is a comprehensive, scholarly yet accessible library of all the main (and many of the fringe) perspectives. It begins with the medical (...) facts: what is dementia? Who gets it? What are the current and future therapeutic and palliative options? What are the main challenges for medical and nursing care? The story is then taken up by the ethicists, who grapple with questions such as: is it legitimate to lie to dementia patients if that is a kind thing to do? Who is the person whose memory, preferences and personality have all been transformed by their disease? Should any constraints be placed on the sexual activity of patients? Are GPS tracking devices an unpardonable interference with the patient's freedom? These issues, and many more, are then examined through legal lenses. The book closes with accounts from dementia sufferers and their carers. It is the first and only book of its kind, and the authoritative text. (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)

In the Netherlands, in 2002, euthanasia became a legitimate medical act, only allowed when the due care criteria and procedural requirements are met. Legally, an Advanced Euthanasia Directive can replace direct communication if a patient can no longer express his own wishes. In the past decade, an exponential number of persons with dementia share a euthanasia request with their physician. The impact this on physicians, and the consequent support needs, remained unknown. Our objective was to gain more insight into (...) the experiences and needs of Dutch general practitioners and elderly care physicians when handling a euthanasia request from a person with dementia. We performed a qualitative interview study. Participants were recruited via purposive sampling. The interviews were transcribed verbatim, and analyzed using the conventional thematic content analysis. Eleven general practitioners and elderly care physicians with a variety of experience and different attitudes towards euthanasia for PWD were included. Euthanasia requests appeared to have a major impact on physicians. Difficulties they experienced were related to timing, workload, pressure from and expectations of relatives, society’s negative view of dementia in combination with the ‘right to die’ view, the interpretation of the law and AEDs, ethical considerations, and communication with PWD and relatives. To deal with these difficulties, participants need support from colleagues and other professionals. Although elderly care physicians appreciated moral deliberation and support by chaplains, this was hardly mentioned by GPs. Euthanasia requests in dementia seem to place an ethically and emotionally heavy burden on Dutch GPs and elderly care physicians. The awareness of, and access to, existing and new support mechanisms needs further exploration. (shrink)

As the number of elderly prisoners increases in the UK and other Western countries, there will be individuals who develop dementia whilst in custody. We present two case vignettes of men with dementia in English prisons, and explore some of the ethical implications that their continuing detention raises. We find little to support their detention in the various purposes of prison put forward by legal philosophers and penologists, and conclude by raising some of the possible implications of The (...) Human Rights Act 1998. (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)

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 affects millions of people throughout the world. Thinking through Dementia offers a critique of the main models used to understand dementia-the biomedical, neuropsychological, and social constructionist. It discusses clinical issues and cases, together with philosophical work that might help us to better understand and treat this illness.

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)

Dementia is highly prevalent and incurable. The participation of dementia patients in clinical research is indispensable if we want to find an effective treatment for dementia. However, one of the primary challenges in dementia research is the patients’ gradual loss of the capacity to consent. Patients with dementia are characterized by the fact that, at an earlier stage of their life, they were able to give their consent to participation in research. Therefore, the phase when (...) patients are still competent to decide offers a valuable opportunity to authorize research, by using an advance research directive. Yet, the use of ARDs as an authorization for research participation remains controversial. In this paper we discuss the role of autonomous decision-making and the protection of incompetent research subjects. We will show why ARDs are a morally defensible basis for the inclusion of this population in biomedical research and that the use of ARDs is compatible with the protection of incompetent research subjects. (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)

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)