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 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)

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)

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)

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)

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)

In order to discover an effective treatment for dementia it is necessary to include dementia patients in clinical research trials. Dementia patients face an increased risk to lose the capacity to consent to research participation, and research possibilities with incompetent participants are legally strictly limited. One solution is for patients to consent to research through an advance research directive whilst still competent. In order to explore whether such a directive would be useful and valuable in practice we (...) conducted a qualitative study. We explored the opinions and arguments of researchers in the field of dementia, aiming to map the possibilities and constraints of ARDs. It was argued that a positive ARD could be valuable to discuss research participation with proxies, and patients with a negative ARD will be excluded from research trials. However, it is argued that an ARD cannot replace the informed consent procedure, and in practice proxy dissent will overrule written consent. The practical use of these directives is thus limited, as most researchers will not comply with positive directives. (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)

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)

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)

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)

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)

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)

Some individuals facing dementia contemplate hastening their own death: weighing the possibility of living longer with dementia against the alternative of dying sooner but avoiding the later stages of cognitive and functional impairment. This weighing resonates with an ethical and legal consensus in the United States that individuals can voluntarily choose to forgo life‐sustaining interventions and also that medical professionals can support these choices even when they will result in an earlier death. For these reasons, whether and how (...) a terminally ill individual can choose to control the timing of their death is a topic that cannot be avoided when considering the dementia trajectory. With a focus on the U.S. context, this landscape review considers the status of provisions that would legally permit people facing dementia to hasten death with appropriate support from medical professionals. This review can be used to plan and guide clinical and legal practitioner discussion and policy development concerning evolving questions not fully covered by existing medical decision‐making provisions. (shrink)

The authors of the paper ‘Advance euthanasia directives: a controversial case and its ethical implications’ articulate concerns and reasons with regard to the conduct of euthanasia in persons with dementia based on advance directives. While we agree on the conclusion that there needs to be more attention for such directives in the preparation phase, we disagree with the reasons provided by the authors to support their conclusions. We will outline two concerns with their reasoning by drawing on empirical research (...) and by providing reasons that contradict their assumptions about competence of people with dementia and the importance of happiness in reasoning about advance directives of people with dementia. We will draw attention to the important normative questions that have been overstepped in their paper, and we will outline why further research is required. (shrink)

Fear of dementia leads some people to demand an opportunity to choose death over life with the illness. They want the power to make advance euthanasia directives and to refuse hand feeding at some point in the dementia process. But the choices we make in advance aren't always suited to the people we become. Experts and family members say people with dementia often adapt, becoming content with their lives. People should care about their future selves with (...) class='Hi'>dementia. Their advance instructions about dementia care should give others freedom to respond to the up‐to‐date information required for good medical decision‐making. (shrink)

Dementia progressively isolates sufferers from their loved ones, who continue to search for meanings in their actions and words. As the condition progresses, meaning becomes harder and harder to find. Yet the actions of the sufferer may contain patterns, hinting at meanings that tempt observers to interpret from their own standpoint. We report the patterns repeated by a sufferer from Alzheimer's disease, artistic arrangements that take time to make, and appeal to observers. To the sufferer, these arrangements seem to (...) have no value beyond the fact of their creation. We wonder how far we can go as observers in imposing interpretations on these patterns of activity, which seem beautiful and poignant to us, but are evanescent and unremarked by their creator. (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)

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 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)

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 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)

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)

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)

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)

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)

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)

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)

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)

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)

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)

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)

This letter responds to the article “On the Authority of Advance Euthanasia Directives for People with Severe Dementia: Reflections on a Dutch Case,” by Henri Wijsbek and Thomas Nys, in the September‐October 2022 issue of the Hastings Center Report.

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)

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)

Almost all jurisdictions where physician-assisted death is legal require that the requesting individual be competent to make medical decisions at time of assistance. The requirement of contemporary competence is intended to ensure that PAD is limited to people who really want to die and have the cognitive ability to make a final choice of such enormous import. Along with terminal illness, defined as prognosis of death within six months, contemporary competence is regarded as an important safeguard against mistake and abuse, (...) arguably the strongest objections to legalizing PAD.The insistence on contemporary competence is problematic. It means that someone who has dementia is ruled out as a candidate for PAD, even if she is terminally ill and suffering terrible and unrelievable pain. It also rules out individuals with strong and unwavering desires not to end their life in dementia. (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)

Background: Dignity, an abstract and complex concept, is an essential part of humanity and an underlying guiding principle in healthcare. Previous literature indicates dignity is compromised in people with dementia (PwD), but those PwD maintain the capacity to live with dignity with appropriate external support. Alzheimer’s disease and related dementias (ADRDs) lead to progressive functional decline and increased vulnerability and dependence, leading to heightened risks of PwD receiving inappropriate or insufficient care that diminishes dignity. Considering the increased disease prevalence (...) and the continuously escalating costs of dementia care, establishing a productive value-based guideline may prevent suffering, maximize dignity, and thus promote quality of life (QoL). Aim: The goal of this project is to identify actionable targets for integrating dignity harmoniously and practically into care planning and management for PwD. Research Design: We conducted a concept analysis using Walker and Avant’s eight-step process. A comprehensive literature search was conducted (PubMed and CINAHL) with the keywords “dignity,” “dementia,” “Alzheimer’s disease,” and “dementia care.” Results: A total of 42 out of 4910 publications were included. The concept of dignity in PwD is operationalized as the promotion of worthiness and the accordance of respect that allows the presence and expression of a person’s sense of self, regardless of physical, mental, or cognitive health. The concept has two subdimensions: absolute dignity which encompasses the inherent self and relative dignity characterized by its dynamic reflective nature. Worthiness and respect are the two main attributes, while autonomy is an underlying component of dignity. Specific antecedents of dignity in PwD are empowerment, non-maleficence, and adaptive environmental scaffolding. As a consequence of facilitating dignity in PwD, QoL may be enhanced. Conclusion: As a foundational and necessary humanistic value, incorporating dignity into dementia care can lead to efficient and effective care that optimizes QoL in PwD throughout their disease progression. (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)

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)

Ronald Dworkin argued that Advance Directives informed by a principle of autonomy ought to guide decisions in relation to the treatment of those in care for dementia. The principle of autonomy in play presupposes a form of competence that is tied to the individual person making the Directive. This paper challenges this individualist assumption. It does so by pointing out that the competence of a patient is inherently relational, and the key illustrative case to make this point is the (...) case of music therapy. In music therapy, a relatively recent treatment modality in aged care, patients previously thought to be permanently unresponsive are shown on the contrary to be capable of significant levels of social agency. The conclusion to draw is that Advance Directives that fail to acknowledge the real possibility of such relational competence are misapplied. (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)

Volume 20, Issue 8, August 2020, Page 88-90.

We agree with Emily Walsh (2020) that the current preferences of patients with dementia should sometimes supersede those patients’ advance directives. We also agree that consensus clinical ethics guidance does a poor job of explaining the moral value of such patients’ preferences. Furthermore, Walsh correctly notes that clinicians are often averse to treating patients with dementia over their objections, and that this aversion reflects clinical wisdom that can inform revisions to clinical ethics guidance. But Walsh’s account of the (...) moral value of the preferences of patients with dementia suffers from three major problems: (1) it does not engage the actual practices of clinical ethics; (2) it provides an inadequate account of why these patients’ preferences matter; and (3) it offers a poor explanation of clinicians’ intuitions in these cases. Her arguments engage a philosophical debate that is largely irrelevant to clinical practice and she therefore leaves pressing real-world clinical ethics questions unaddressed. After underscoring some of Walsh’s main points, we will discuss each of these shortcomings. (shrink)

Autonomous decisions are decisions that reflect the self who makes them. Since patients in need of surrogate decision making can no longer enjoy the dignity of being free to express who they are through choice and action, surrogates should strive to, at least, make sure that decisions on behalf of the patient reflects that patient's self. Concepts of the self, then, underlie views about the role autonomy should play in surrogate decision making. Alzheimer's disease (AD) complicates the situation because it (...) is a disease which effects the self and theorists disagree about which aspect of the AD self the decision should reflect. This disagreement has led to a seemingly irresolvable split between those who favor the then self and those who favor the now self. The debate has stalled because while both of these views are attractive, neither seems adequate. That is, neither view is complete because each focuses only on one aspect of a whole self. In this paper, I argue that a good mode of surrogate decision making is one that focuses on the whole self and I offer practical advice concerning how we can begin to think about how such a decision might be made. (shrink)

The world population aged significantly over the twentieth century, leading to an increase in the number of individuals presenting progressive, incapacitating, incurable chronic-degenerative diseases. Advances in medicine to prolong life prompted the establishment of instruments to ensure their self-determination, namely the living will, which allows for an informed person to refuse a type of treatment considered unacceptable according to their set of values. From the knowledge on the progression of Alzheimer disease, it is possible to plan the medical care, even (...) though there is still no treatment available. Irreversible cognitive incapacity underlines the unrelenting loss of autonomy of the demented individual. Such a loss requires the provision of specific and permanent care. Major ethical issues are at stake in the physician–patient–family relationship, even when dementia is still at an early stage. The authors suggest that for an adequate health care planning in Alzheimer disease the living will can be presented to the patient in the early days of their geriatric care, as soon as the clinical, metabolic or even genetic diagnosis is accomplished. They also suggest that the appointment of a health care proxy should be done when the person is still in full enjoyment of his cognitive ability, and that the existence and scope of advance directives should be conveyed to any patient in the early stages of the disease. It follows that ethical guidelines should exist so that neurologists as well as other physicians that deal with these patients should discuss these issues as soon as possible after a diagnosis is reached. (shrink)