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)

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)

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)

The literature on epistemic injustice has thus far confined the concept of testimonial injustice to speech expressions such as inquiring, discussing, deliberating, and, above all, telling. I propose that it is time to broaden the horizons of testimonial injustice to include a wider range of expressions. Controversially, the form of communication I have in mind is non-verbal expression. Non-verbal expression is a vital, though often overlooked, form of communication, particularly for people who have certain neurocognitive disorders. Dependency upon non-verbal expression (...) is a common feature of some forms of neurocognitive disorders such as ‘intellectual disabilities’, autism and late-stage dementia. According to the narrow definition of testimonial injustice currently championed in the literature, people who express non-verbally are exempt from testimonial injustice. However, when we consider cases where meaningful communications from non-verbal people are dismissed or ignored in virtue of identity prejudice, there seems to be a distinct testimonial harm at play. Using late-stage dementia as a case study, I argue that the definition of testimonial injustice should be expanded to include all communicative practices, whether verbal or non-verbal, to encompass the epistemic harms inflicted upon some of the most marginalised in our society. (shrink)

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

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

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)

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)

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

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)

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)

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)

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)

We describe a case of an elderly patient suffering from advanced dementia whose chronic confusion has become a source of frustration for her caregivers. Mrs. M experiences a touching interaction with a new nurse 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)

This study aimed to understand the preserved elements of self-identity in persons with moderate to severe dementia attributable to Alzheimer’s disease. A semi-structured interview was developed to explore the narrative self among residents with dementia in a residential care facility and residents without dementia in an independent living setting. The interviews were transcribed verbatim from audio recordings and analyzed for common themes, while being sensitive to possible differences between the groups. The participants with dementia showed evidence (...) of self-reference even though losses in explicit memory were evident. The most noticeable difference between the two groups was time frame reference. Nonetheless, all participants showed understanding of their role in relationships and exhibited concrete preferences. Our findings suggest that memory loss and other cognitive deficits associated with moderate to severe dementia do not necessarily lead to a loss of “self.”. (shrink)

The response to feeding needs in advanced dementia patients is a subject of ethical inquiry. Advanced dementia is the debilitating result of a range of neurodegenerative diseases. As this terminal illness progresses, patients develop mild to severe dysphagia that can make swallowing difficult. Of the two available options, artificial tube feeding or oral hand feeding, an estimated one-third of these patients will receive artificial tube feeding. However, observational studies have failed to validate the clinical benefits of tube feeding. (...) Ethics of care, the feminist philosophical perspective, and Ubuntu philosophy offer arguments for the choice of oral hand-feeding as a preferrable first option by caregivers as far as possible. These moral theories acknowledge that human beings can be dependent for long periods, mostly early and later years of life. Both views reflect an approach that draws people into a system of interdependent caring relationships. They encourage hand feeding as a way of exhibiting solidarity and respecting human dignity even at the end of life. (shrink)

This paper introduces the concept of ‘skeuomorphic reassurance’ as a guiding principle for human interfaces in technological development and design, particularly for older people and people with dementia (PwD). Skeuomorphs exhibit decorative design elements reminiscent of ‘parent’ objects that incorporated such design elements because they were structurally integral. Human interfaces adopted by new technologies need to be carefully balanced between novelty and recognisability. -/- The philosophy of personhood is discussed in the context of dementia, concluding that the (...) subjective character of conscious mental processes is an irreducible feature of reality, and that the persistence of personhood in PwD constitutes a further argument in support of this assertion. -/- Assistive technologies that aid family and carers, as well as PwD, and their relationships, need to ensure that skeuomorphic reassurance is incorporated in their design, not least because older people and PwD need recognisable interfaces today, but, as this paper argues, because the problems today’s over-65s have with digital technologies may quite likely not go away, but re-present themselves generation after generation, unless skeuomorphic reassurance is built into their design. (shrink)

Do laypeople think that moral responsibility is compatible with determinism? Recently, philosophers and psychologists trying to answer this question have found contradictory results: while some experiments reveal people to have compatibilist intuitions, others suggest that people could in fact be incompatibilist. To account for this contradictory answers, Nichols and Knobe (2007) have advanced a ‘performance error model’ according to which people are genuine incompatibilist that are sometimes biased to give compatibilist answers by emotional reactions. To test for this hypothesis, we (...) investigated intuitions about determinism and moral responsibility in patients suffering from behavioural frontotemporal dementia. Patients suffering from bvFTD have impoverished emotional reaction. Thus, the ‘performance error model’ should predict that bvFTD patients will give less compatibilist answers. However, we found that bvFTD patients give answers quite similar to subjects in control group and were mostly compatibilist. Thus, we conclude that the ‘performance error model’ should be abandoned in favour of other available model that best fit our data. (shrink)

There is an urgent need to learn how to appropriately integrate technologies into dementia care. The aims of this Delphi study were to project which technologies will be most prevalent in dementia care in five years, articulate potential benefits and risks, and identify specific options to mitigate risks. Participants were also asked to identify technologies that are most likely to cause value tensions and thus most warrant a conversation with an older person with mild dementia when families (...) are deciding about their use. Twenty-one interdisciplinary domain experts from academia and industry in aging and technology in the U.S. and Canada participated in a two-round online survey using the Delphi approach with an 84% response rate and no attrition between rounds. Rankings were analyzed using frequency counts and written-in responses were thematically analyzed. Twelve technology categories were identified along with a detailed list of risks and benefits for each. Suggestions to mitigate the most commonly raised risks are categorized as follows: intervene during design, make specific technical choices, build in choice and control, require data transparency, place restrictions on data use and ensure security, enable informed consent, and proactively educate users. This study provides information that is needed to navigate person-centered technology use in dementia care. The specific recommendations participants offered are relevant to designers, clinicians, researchers, ethicists, and policy makers and require proactive engagement from design through implementation. (shrink)

What is the value of an early diagnosis of dementia in the absence of effective treatment? There has been a lively scholarly debate over this question, but until now patients have not played a large role in it. Our study supplements biomedical research into innovative diagnostics with an exlporation of its meanings and values according to patients. Based on seven focusgroups with patients and their care-givers, we conclude that stakeholders evaluate early diagnostics with respect to whether and how they (...) expect it to empower their capacity to care. They value it, for instance, with respect to whether it explains experienced complaints, allows to start a process of psychological acceptance and social adaptation to the expected degeneration, contributes to dealing with anxieties, informs adequately about when to start preparing for the end of life, informs the planning of a request for euthanasia, or allows society to deal with a growing amount of dementia patients. Our study suggests that information about disease is considered ‘harmful’ or ‘premature’ when recipients feel unable to act on that information in their care. The results of this research offers input to further ethical research. It invites to adopt a care perspective in evaluation and to seek ways to prevent the ‘harm’ that such diagnostic methods can bring about. (shrink)

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

Journal of Applied Philosophy, EarlyView.

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

While pain is common among seniors, it is not adequately treated or managed. In particular, pain in seniors with dementia is often undertreated and undermanaged. Although the undertreatment of pain among persons with cognitive impairments represents a serious ethical concern for pain clinicians, most writers in the area explain the undertreatment of pain by focusing on issues related to liability, fears of addiction to opioids, and erroneous beliefs that pain is a normal part of the ageing process. We argue (...) that the philosophical notion of personhood must also be given careful attention when considering the problem of pain undermanagement. In this paper, we consider the undertreatment of pain among seniors with dementia, while focusing on the ontology of relationships and on existential philosophy. Moreover, we outline a series of recommendations to help minimize the probability of pain undertreatment in this population and to encourage considerations relating to personhood when treating people with dementia. (shrink)

Since John Locke, regnant conceptions of personhood in Western philosophy have focused on individual capabilities for complex forms of consciousness that involve cognition such as the capability to remember past events and one’s own past actions, to think about and identify oneself as oneself, and/or to reason. Conceptions of personhood such as Locke's qualify as cognition-oriented, and they often fail to acknowledge the role of embodiment for personhood. This article offers an alternative conception of personhood from within the tradition (...) of phenomenology of the body. The article presents a phenomenological analysis of joint musical activity in dementia care and outlines an intercorporeal conception of personhood based on this analysis. It also provides a philosophical basis for the idea that others can hold us in personhood, and it questions a strict one-body-one-person logic that has pertained in much personhood debate. (shrink)

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

In this paper, I address the effects of social distancing for embodied lived experience in relation to dementia care and experiences of dementia. From a critical phenomenological perspective, I focus specifically on the safety measures of physical distancing and face-masking in pandemic times, asking whether they might risk marginalizing and disembodying people with dementia, especially in isolated healthcare settings. As much as these measures offer physical protection against spreading the virus, I consider how they might disrupt intersubjective (...) processes (e.g., calming social or therapeutic touch) and contribute to “an alienated bodily communication” (Dolezal 2020). From Husserl and Merleau-Ponty’s philosophies of embodiment and enactive theories of intersubjectivity, to more recent phenomenological work on illness, many authors argue that our existential being-in-the-world is embodied in multimodal and intersubjective ways (Fuchs and De Jaeger 2009; Carel 2016; Ratcliffe 2008; Kontos 2011). For this reason, our lived bodies need to stay in touch and positively interact with other lived bodies. Based on empirical studies of multisensory and interactive therapy in nursing homes before and during the COVID-19 pandemic, I emphasize the effects of distant socializing for patients, care, and carers. My aim is to address the broader structures and discursive practices, which have undergone dramatic changes due to the spread of COVID-19. (shrink)

Patients with advanced dementia are less likely than those with other terminal illnesses to receive palliative care. Due to the nature and course of dementia, there may be a failure to recognize the terminal stage of the disease. A possible and under-investigated explanation for this healthcare disparity is the healthcare practitioner who plays a primary role in end-of-life decision-making. Two potential areas that might impact provider decision-making are cognitive biases and moral considerations. In this analysis, we demonstrate how (...) the cognitive biases and moral considerations of practitioners related to clinical decision-making are inherent in clinical practice and may impact on providers’ accuracy related to diagnostic and treatment related decision-making associated with patients with advanced dementia. Anchoring, default, availability, representativeness and framing biases are cognitive biases based on the "Two System Model" that relate to decision-making in end-of-life care. In patients with advanced dementia, those biases may result in a tendency to adhere to traditional mandatory care, involving an aggressive approach to care, which values saving lives at all costs, without taking into account the possible suffering and long-term consequences. Aspects such as moral sensitivity and moral courage play an important role in ethical decision-making related to advanced dementia. Investigations of clinical decision-making that include the cognitive biases and ethical considerations of practitioners might advance the comprehensive understanding of the clinical decision-making process related to care of patients with advanced dementia and promote the quality of care given to this population. (shrink)

This chapter contains sections titled: Bioethics in a New Key Relationship and Recognition in Dementia Care Quality of Life and Agency References.

The degree of success in creating quality care for people suffering from dementia is limited despite extensive research. This article describes Healthcare providers’ experience with the ethical challenges and possibilities in the relationship with patients suffering from dementia and its impact on quality care. The material is based on qualitative, in-depth individual narrative interviews with 12 professional Healthcare providers from two different nursing homes. The transcribed interview texts were subjected to a phenomenological–hermeneutical interpretation. To provide quality care to (...) patients with dementia, the Healthcare providers emphasized the importance of sensing and understanding the patients’ emotional and bodily expressions through sentient attentiveness and recognition of the patient as a person. They also described reciprocity of expressions in the relationship where the patient recognized them both as persons and Healthcare providers. The analyses of the findings are, inter alia, discussed in light of Løgstrup’s relational philosophy of ethics. (shrink)

Because dementia can cause individuals to make decisions that they otherwise would not, the law needs a mechanism to determine which decisions are entitled to the respect of the legal system and which may be overridden by others. In the philosophical literature, three primary theories for how to make this determination have been offered. First, "Cognitivism" posits that whether a decision should be recognized is a function of the mechanical functioning of the individual's brain at the time the decision (...) is made. Second, "Essentialism" holds that decisions should be recognized so long as they are consistent with the cluster of values and attributes that define the individual. Third, "Narrativism" argues that decisions should be respected where they follow from the life story of the individual making them.In the growing tradition of experimental philosophy, this Article empirically analyzes support for these three alternative theories in a mixed-methods study involving a population of American seniors, including an online survey (n=235) and interviews (n=25). Close analysis of the results revealed a near-consensus that Narrativism is the theoretical framework through which participants understood the question of when the legal system should intervene in private decision-making. In short, participants wanted the legal capacity to make decisions taken from them only when dementia became so advanced that they would no longer be the same person they previously had been, which they understood as a question of narrative continuity. (shrink)

While the value of early detection of dementia is largely agreed upon, population-based screening as a means of early detection is controversial. This controversial status means that such screening is not recommended in most national dementia plans. Some current practices, however, resemble screening but are labelled “case-finding” or “detection of cognitive impairment”. Labelled as such, they may avoid the ethical scrutiny that population-based screening may be subject to. This article examines conceptualizations of screening and case-finding. It shows how (...) the definitions and delimitations of the concepts (the _what_ of screening) are drawn into the ethical, political, and practical dimensions that screening assessment criteria or principles are intended to clarify and control (the _how_ of screening, how it is and how it should be performed). As a result, different conceptualizations of screening provide the opportunity to rethink what ethical assessments should take place: the conceptualizations have different ethico-political implications. The article argues that population-based systematic screening, population-based opportunistic screening, and case-finding should be clearly distinguished. (shrink)

BackgroundThe terminal illness of late-stage Alzheimer’s and related dementias is progressively cruel, burdensome, and can last years if caregivers assist oral feeding and hydrating. Options to avoid prolonged dying are limited since advanced dementia patients cannot qualify for Medical Aid in Dying. Physicians and judges can insist on clear and convincing evidence that the patient wants to die—which many advance directives cannot provide. Proxies/agents’ substituted judgment may not be concordant with patients’ requests. While advance directives can be patients’ last (...) resort to attain a peaceful and timely dying consistent with their lifelong values, success depends on their being effective and acceptable. A single flaw can provide opponents justification to refuse the directive’s requests to cease assisted feeding.AimThis article considers 24 common advance directive flaws in four categories. Process flaws focus on how patients express their end-of-life wishes. Content flaws reflect drafters’ selection of conditions and interventions, and how they are described. Inherent flaws can make advance directives unacceptable to authorities concerned about premature dying. Strategies are needed to compel physicians to write needed orders and to prevent third parties from sabotaging these orders after they are implemented. The article includes excerpts from “dementia-specific” directives or supplements that exemplify each flaw—mostly from the US and Europe. No directive critiqued here included an effective strategy to resolve this long-debated bioethical conflict: the past directive requests “Cease assisted feeding” but the incapacitated patient apparently expresses the desire to “Continue assisted feeding.” Some opponents to the controversial request, cease assisted feeding, use this conflict as a conceptual wedge to practice hard paternalism. This article proposes a protocol to prevent this conflict from emerging. These strategies may prevent authorities from requiring patients to fulfill authorities’ additional clinical criteria as a prerequisite to honor the requests in patients directives.ConclusionThis critique of flaws may serve as a guide to drafting and to selecting effective and acceptable advance directives for dementia. It also poses several bioethical and clinical questions to those in authority: Does your paternalistic refusal to honor patients’ wishes respect their self-determination? Protect vulnerable patients from harm? Force patients to endure prolonged suffering? Violate the principles of bioethics? Violate the very foundation of patient-centered care? (shrink)

It is commonly assumed that many, if not most, adult children have moral duties to visit their parents when they can do so at reasonable cost. However, whether such duties persist when the parents lose the ability to recognise their children, usually due to dementia, is more controversial. Over 40% of respondents in a public survey from the British Alzheimer’s Society said that it was “pointless” to keep up contact at this stage. Insofar as one cannot be morally required (...) to do pointless things, this would suggest that children are relieved of any duties to visit their parents. In what appears to be the only scholarly treatment of this issue, Claudia Mills has defended this view, arguing that our duties to visit our parents require a type of relationship that is lost when parents no longer remember who their children are. This article challenges Mills’ argument. Not only can children be duty-bound to visit parents who have lost the ability to recognise them, I argue that many children do in fact have such duties. As I show, these duties are grounded in any special interests that their parents have in their company; the fact that visiting their parents might allow them to comply with generic duties of sociability; and/or the fact that such visits allow them to express any gratitude that they owe their parents. (shrink)

Dementia is highly prevalent and up until now, still incurable. If we may believe the narrative that is currently dominant in dementia research, in the future we will not have to suffer from dementia anymore, as there will be a simple techno-fix solution. It is just a matter of time before we can solve the growing public health problem of dementia. In this paper we take a critical stance towards overly positive narratives of techno-fixes by placing (...) our empirical analysis of dementia research protocols and political statements in a framework of technology assessment. From this perspective, it becomes obvious that a techno-fix is just one of many ways to approach societal problems and more importantly that technologies are way less perfect than they are presented. We will argue that this narrow scope, which focusses on the usual suspects for solving illnesses, reduces dementia to organismic aspects, and may be counterproductive in finding a cure for dementia. We conclude with outlining how the narrow scope can be balanced with other narratives and why we should have a reasonable scepticism towards the usual suspects. (shrink)

This is an essay based on a story with observations, about present and sparkling moments from everyday life coexisting with a mother living with dementia. The story is used to begin philosophical underpinnings reflecting on ‘how it could be otherwise’. Dementia deploys brutal existential experiences such as cognitive deterioration, decline in mental functioning and often hurtful social judgements. The person living with dementia goes through transformation and changes of self. Cognitive decline progressively disrupts the foundations upon which (...) social connectedness is built, often creating a profound sense of insecurity. The challenge for carers and healthcare professionals is therefore to find ways of clarifying a concept of agency. It will be worthwhile developing the ability of attuning into ‘what is there’ arising from every corner of the care situation. Understanding and practicing this can strengthen existence and the experience of connectedness and meaning, empowering the person with dementia. It is important to find ways, relational moves, in which carers and healthcare professionals can embed the creativity appearing in mundane everyday situations filled with surplus of meaning, sharing mental landscapes (and embodied relational understanding) with the person living with dementia – seizing and sharing aesthetic moments (verbal and nonverbal) being present together. We argue that carers and healthcare professionals may find this understanding of care useful. This implies looking into a phenomenological‐hermeneutic perspective developing competences as well as practical wisdom understanding and being aware of the creative and innovative possibilities (often preverbal and unnoticed small things) in everyday life of what we, inspired by psychoanalyst Daniel Stern, call sparkling moments of meeting, creating experience with the other that is personally undergone and lived through in the present. (shrink)

Contemporary bioethics pays considerable attention to the ethical aspects of dementia care. However, ethical issues of sexuality especially as experienced by institutionalized persons with dementia are often overlooked. The relevant existing ethics literature generally applies an implicit philosophical anthropology that favors the principle of respect for autonomy and the concomitant notion of informed consent. In this article we will illustrate how this way of handling the issue fails in its duty to people with dementia. Our thesis is (...) that a more inclusive philosophical anthropology is needed that also heeds the fate of this growing population. Drawing on the tradition of phenomenology, we will chalk out an anthropological framework that rests on four fundamental characteristics of human existence: the decentered self, human embodiment, being-in-the-world and being-with-others. Our aim in this article is thus to tentatively put forward a broader perspective for looking at aged sexuality in institutionalized people with dementia. Hopefully the developed framework will mark the beginning of a new and refreshed ethical reflection on the topic at hand. (shrink)

In Memory of Ed PellegrinoEuthanasia in Belgium is not limited to terminally ill patients. It may be applied to patients with chronic degenerative diseases. Currently, people in Belgium wish to make it possible to euthanize incompetent patients who suffer from dementia. This article explains the Belgian law and then explores arguments for and against euthanasia of patients with dementia. It probes the dementia paradox by elucidating Dworkin’s distinction between critical and experiential interests, arguing that at the end-of-life (...) this distinction is not clearcut. It argues against euthanasia for patients with dementia, for respecting patients’ humanity and for providing them with more care, compassion, and good doctoring. (shrink)

Nutrition and hydration—including artificially delivered, or assisted, nutrition and hydration (ANH)—are typically considered ordinary or proportionate care in the Roman Catholic moral tradition. They are thus morally obligatory, except when the benefit to the patient does not justify the burden their administration places on the patient or when they no longer prolong life (e.g., in end-stage disease when death is imminent). A review of Church documents and the medical literature provides convincing evidence that there are cases in which ANH provides (...) little hope of benefit and may impose an excessive burden on the patient. This paper closely examines advanced dementia of the Alzheimer’s (DAT) type and shows how ANH can be properly considered extraordinary care and hence is not obligatory in patients with advanced DAT. National Catholic Bioethics Quarterly 8.2 (Summer 2008): 291–305. (shrink)

Nutrition and hydration—including artificially delivered, or assisted, nutrition and hydration (ANH)—are typically considered ordinary or proportionate care in the Roman Catholic moral tradition. They are thus morally obligatory, except when the benefit to the patient does not justify the burden their administration places on the patient or when they no longer prolong life (e.g., in end-stage disease when death is imminent). A review of Church documents and the medical literature provides convincing evidence that there are cases in which ANH provides (...) little hope of benefit and may impose an excessive burden on the patient. This paper closely examines advanced dementia of the Alzheimer’s (DAT) type and shows how ANH can be properly considered extraordinary care and hence is not obligatory in patients with advanced DAT. National Catholic Bioethics Quarterly 8.2 (Summer 2008): 291–305. (shrink)

Euthanasia advocates have recently begun counseling people to create advance directives calling for oral food and water to be withheld if the person reaches a certain stage of dementia. The author shows that these directives are in fact requests for euthanasia, and they leave vulnerable people subject to poor-quality care. Both surrogate decision makers and Catholic institutions have a moral obligation not to implement such directives, and surrogates, rather than withdrawing as proxies, have a moral obligation to advocate for (...) the life and proper care of the incompetent person. Finally, the author argues that society is morally culpable if it does not strongly resist euthanasia in all its forms. National Catholic Bioethics Quarterly 16.3 : 421–434. (shrink)

The question of when we have justification for overriding ordinary, everyday decisions of persons with dementia is considered. It is argued that no single criterion for competent decision-making is able to distinguish reliably between decisions we can legitimately override and decisions we cannot legitimately override.

BackgroundThe UN Convention on the Rights of Persons with Disabilities, and the reformed guardianship law in Germany, require that persons with a disability, including people with dementia in Alzheimer’s disease (PwAD), are supported in making self-determined decisions. This support is achieved through communication. While content-related communication is a deficit of PwAD, relational aspects of communication are a resource. Research in supported decision-making (SDM) has investigated the effectiveness of different content-related support strategies for PwAD but has only succeeded in improving (...) understanding, which, although one criterion of capacity to consent, is not sufficient to ensure overall capacity to consent. The aim of the ‘spatial intervention study’ of the DECIDE project is to examine an innovative resource-oriented SDM approach that focuses on relational aspects. We hypothesise that talking to PwAD in their familiar home setting (as opposed to a clinical setting) will reduce the complexity of the decision-making process and enhance overall capacity to consent. MethodsPeople with a suspected or confirmed diagnosis of dementia in Alzheimer’s disease will be recruited from two memory clinics (N = 80). We will use a randomised crossover design to investigate the intervention effect of the decision-making place on capacity to consent. Besides reasoning capacity, which is part of overall capacity to consent and will be the primary outcome, various secondary outcomes (e.g., other aspects of capacity to consent, subjective task complexity, decisional conflict) and suspected moderating or mediating variables (e.g., meaning of home, demographic characteristics) will be assessed.DiscussionThe results of the study will be used to develop a new SDM strategy that is based on relational resources for PwAD. If a change in location achieves the anticipated improvement in capacity to consent, future research should focus on implementing this SDM strategy in a cost-effective manner in clinical practice.Trial registration: DRKS00030799. (shrink)

“Home” is well known from everyday experience, plays a crucial role in all kinds of narratives about human life, but is hardly ever systematically dealt with in the philosophy of medicine and health care. The notion of home is ambiguous, is often used in a metaphorical way, and is closely related to concepts such as house and dwelling. In this paper the phenomenon of home is explored by means of some phenomenological writings of Heidegger, Bollnow, Bachelard and Levinas. Common (...) in their views is that being at home and dwelling mean something more fundamental than an activity we do along with other activities, such as working and travelling. Dwelling, building a house and being at home are fundamental aspects of human existence. Being human is dwelling. While exploring the relevance of this phenomenological perspective for medical theory and practice, the focus is on the care of people suffering from dementia. (shrink)