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)

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

A large number of studies, including single case and case series studies, have shown that patients with different types of frontotemporal dementia are characterized by the emergence of artistic abilities. This led to the hypothesis of enhanced creative thinking skills as a function of these pathological conditions. However, in the last years, it has been argued that these brain pathologies lead only to an augmented “drive to produce” rather than to the emergence of creativity. Moreover, only a few (...) studies analyzed specific creative skills, such as divergent thinking, by standardized tests. This Mini-Review aimed to examine the extent to which DT abilities are preserved in patients affected by FTD. Results showed that DT abilities are altered in different ways according to the specific anatomical and functional changes associated with the diverse forms of FTD. On the one hand, patients affected by the behavioral form of FTD can produce many ideas because of unimpaired access to memory stores, but are not able to recombine flexibly the information to produce original ideas because of damages in the pre-frontal cortex. On the other hand, patients affected by the semantic variant are impaired also in terms of fluency because of the degradation of their semantic memory store. Potential implications, limitations, and future research directions are discussed. (shrink)

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

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)

Behavioural variant frontotemporal dementia (bvFTD) is a subtype of frontotemporal dementia characterized by changes in personality, social behaviour, and cognition. Although neural abnormalities cause bvFTD patients to struggle with inhibiting problematic behaviour, they are generally considered fully autonomous individuals. Subsequently, bvFTD patients demonstrate understanding of right and wrong but are unable to act in accordance with moral norms. To investigate the ethical, legal, and social issues associated with bvFTD, we conducted a scoping review of academic literature (...) with inclusion & exclusion criteria and codes derived from our prior work. Among our final sample of fifty-six articles, four mentioned bvFTD patient-offenders as unfit to stand trial by insanity, and sixteen mentioned the use of dementia evidence in a court of law to better understand the autonomy of bvFTD patients. Additional emergent issues that were discovered include: training police officers to handle situations involving bvFTD patients and educating healthcare providers on how to help caregivers navigate bvFTD. The current literature highlights the inadequacy of traditional applications of medico-legal categories such as autonomy, capacity and competence, in informing cognitive capacity assessments in clinical and legal settings and deserves consideration by neuroethicists. (shrink)

Behavioural variant frontotemporal dementia (bvFTD) is characterized by an absence of obvious cognitive impairment and presence of symptoms such as disinhibition, social inappropriateness, personality changes, hyper-sexuality, and hyper-orality. Affected individuals do not feel concerned enough about their actions to be deterred from violating social norms, and their antisocial behaviours are most likely caused by the neurodegenerative processes in the frontal and anterior temporal lobes. BvFTD patients present a challenge for the traditional notion of autonomy and the medical and (...) criminal justice systems. Antisocial behaviour is often the earliest recognized manifestation of bvFTD. Given that the symptoms are not specific and that atrophy of the frontal lobes is only observable with structural neuroimaging in the later stages of the disease, it is hard to ascertain their autonomy. Recently proposed re-conceptualizations of autonomy (Dworkin’s, Jaworska’s, and Dubljević’s) can, however, be sufficiently redefined to provide explicit rules and offer nuanced guidance in such cases. A combination of notions of autonomy gives the most nuanced guidance with three modifications: 1) including socio-moral judgement in the notion of “normal cognitive competence,” 2) excluding in-principle un-endorsable ideals from the notion of “capacity to value,” and 3) redefining ideal-typical degrees of compulsion (mild, severe, and total). (shrink)

Indirect speech acts—responding “I forgot to wear my watch today” to someone who asked for the time—are ubiquitous in daily conversation, but are understudied in current neurobiological models of language. To comprehend an indirect speech act like this one, listeners must not only decode the lexical-semantic content of the utterance, but also make a pragmatic, bridging inference. This inference allows listeners to derive the speaker’s true, intended meaning—in the above dialog, for example, that the speaker cannot provide the time. In (...) the present work, we address this major gap by asking non-aphasic patients with behavioral variant frontotemporal dementia and brain-damaged controls with amnestic mild cognitive impairment to judge simple question-answer dialogs of the form: “Do you want some cake for dessert?” “I’m on a very strict diet right now,” and relate the results to structural and diffusion MRI. Accuracy and reaction time results demonstrate that subjects with bvFTD, but not MCI, are selectively impaired in indirect relative to direct speech act comprehension, due in part to their social and executive limitations, and performance is related to caregivers’ judgment of communication efficacy. MRI imaging associates the observed impairment in bvFTD to cortical thinning not only in traditional language-associated regions, but also in fronto-parietal regions implicated in social and executive cerebral networks. Finally, diffusion tensor imaging analyses implicate white matter tracts in both dorsal and ventral projection streams, including superior longitudinal fasciculus, frontal aslant, and uncinate fasciculus. These results have strong implications for updated neurobiological models of language, and emphasize a core, language-mediated social disorder in patients with bvFTD. (shrink)

Loss of insight is a prominent clinical manifestation of behavioral variant frontotemporal dementia , but its characteristics are poorly understood. Twelve bvFTD patients were compared with 12 Alzheimer’s disease patients on a structured insight interview of cognitive insight and emotional insight . Compared to the AD patients, the bvFTD patients were less aware and less concerned about their disorder, and they had less appreciation of its effects on themselves and on others. After corrective feedback , the bvFTD patients (...) were just as aware of their disorder as the AD patients but remained unconcerned and unappreciative of its effects. These findings suggest that lack of insight in bvFTD is not due to “anosognosia,” or impaired cognitive and executive awareness of disease, but to “frontal anosodiaphoria,” or lack of emotional concern over having bvFTD and its impact on themselves and others. (shrink)

Patients with behavioral variant of frontotemporal dementia (FTD) have difficulties recognizing facial emotions, a deficit that may contribute to their impaired social skills. In three experiments, we investigated the FTD deficit in recognition of facial emotions, by comparing six patients with impaired social conduct, nine Alzheimer’s patients, and 10 age-matched healthy adults. Experiment 1 revealed that FTD patients were impaired in the recognition of negative facial emotions. Experiment 2 replicated these findings when participants had to determine whether two (...) faces were expressing the same or different emotions. Experiment 3 was a control study in which participants had to discriminate whether two faces were of the same sex. In this non-emotional processing task, both patient groups performed worse than normal participants, but FTD patients performed as well as Alzheimer’s patients. We conclude that FTD patients are impaired in the recognition of negative facial emotions. © 2005 Elsevier Ltd. All rights reserved. (shrink)

Patients suffering from the behavioral variant of Frontotemporal Dementia (FTD-b) often exaggerate their abilities. Are those errors in judgment limited to domains in which patients under-perform, or do FTD-b patients overestimate their abilities in other domains? Is overconfidence in FTD-b patients domain-specific or domain-general? To address this question, we asked patients at early stages of FTD-b to judge their performance in two domains (attention, perception) in which they exhibit relatively spared abilities. In both domains, FTD-b patients overestimated their (...) performance relative to patients with Dementia of Alzheimer Type (DAT) and healthy elderly subjects. Results are consistent with a domaingeneral deficit in metacognitive judgment. We discuss these findings in relation to “regression to the mean” accounts of overconfidence and the role of emotions in metacognitive judgments. (shrink)

The question whether human beings have free will has been debated by philosophers and theologians for thousands of years. More recently, neuroscientists have applied novel concepts and tools in neuroscience to address this question. We submit that human beings do have free will and the physiological substrate for its exercise is contained within neural networks. We discuss the potential neurobiology of free will by exploring volitionally initiated motor activity and the behavioural-response to a stimulus-response paradigm. We also submit that the (...) exercise of free will can be affected in patients with the certain neurological disorders such as the behavioural variant of frontotemporal dementia. Clinicopathological correlation in patients with this disorder provides an opportunity to further elucidate the neural substrate for this fundamental human attribute. We also discuss the clinical correlates of the loss of free will in this population, which is a source of significant distress to patients, significant others and care givers. (shrink)

Loss of personal identity in dementia can raise a number of ethical considerations, including the applicability of advance directives and the validity of patient preferences that seem incongruous with a previous history of values. In this chapter, we first endorse the self-concept view as the most appropriate approach to personal continuity in healthcare. We briefly describe two different types of dementia, Alzheimer’s dementia (AD) and behavioral-variant frontotemporal dementia (bv-FTD). We identify elements considered important for the (...) continuation of a self-concept, including continuation of memories, consistency in personality traits and personal preferences, and continued endorsement of certain moral tenets. We show that, depending on which element is considered most important for personal identity, continuity of a self-concept for individuals with distinct types of dementia will be affected and assessed differently. Utilizing a variety of empirical evidence, we argue that persistence of memory, personality traits, and preferences are not the most important for the maintenance of personal identity. Instead, as studies aimed to capture the folk-psychological view of personal continuity demonstrate, judgements about continuity depend primarily on the persistent commitment to widely shared moral beliefs. Because of that, we argue that individuals with bv-FTD are more likely to lose their sense of self than individuals whose dementia primarily affects memory, such as Alzheimer’s disease. We end the chapter by showing how the importance of moral beliefs for continuity of self can be used to provide guidance to health-care professionals when considering changes in preference by individuals with dementia. (shrink)

The growth factor progranulin (PGRN) regulates cell division, survival, and migration. PGRN is an extracellular glycoprotein bearing multiple copies of the cysteine‐rich granulin motif. With PGRN family members in plants and slime mold, it represents one of the most ancient of the extracellular regulatory proteins still extant in modern animals. PRGN has multiple biological roles. It contributes to the regulation of early embryogenesis, to adult tissue repair and inflammation. Elevated PGRN levels often occur in cancers, and PGRN immunotherapy inhibits the (...) growth of hepatic cancer xenografts in mice. Recent studies have demonstrated roles for PGRN in neurobiology. An autosomal dominant mutation in GRN, the gene for PGRN, leads to neuronal atrophy in the frontal and temporal lobes, resulting in the disease frontotemporal lobar dementia. In this review we will discuss current knowledge of the multifaceted biology of PGRN. (shrink)

BackgroundThis study aimed to elucidate the influence of dementia etiologies on the degree of caregiver burden and determine which factors predict a high caregiving burden.MethodsThis 18-month retrospective cohort study enrolled 630 patients and their caregivers from the Dementia Center of Changhua Christian Hospital. The care team performed face-to-face interviews every 6 months, for 18 months from when a diagnosis of dementia was made. The primary outcome was the change in Zarit Burden Interview scores. Generalized estimating equations were (...) used for the longitudinal data analysis.ResultsParticipants with Lewy body disease had a significantly higher caregiving burden compared with those with Alzheimer's disease after adjusting for patient and caregiver features. Caregivers of mixed-type dementia and frontotemporal dementia experienced a greater burden than caregivers of AD, at 6- and 18-month follow-up. Patients with more severe dementia, neuropsychiatric symptoms, being cared for by more than two caregivers, or utilizing social resources were associated with higher ZBI scores; the depressive mood of caregiver also predicted higher ZBI scores.ConclusionThis longitudinal study demonstrated that caregiver burden was influenced by the underlying dementia etiology of patients. The dementia care team should provide personalized education and transfer patients and caregivers to appropriate resources, especially for high-risk populations. (shrink)

Ryan Darby, Judith Edersheim, and Bruce Price (DEP) argue that patients with Behavioral-Variant Frontotemporal Dementia have intact moral knowledge. In effect, they assume a motivational externalist understanding of moral knowledge. We question this by probing the cases they present as evidence for their position.

Neurological diseases (NDs), featured by progressive dysfunctions of the nervous system, have become a growing burden for the aging populations. N‐Deacetylase and N‐sulfotransferase 3 (NDST3) is known to catalyze deacetylation and N‐sulfation on disaccharide substrates. Recently, NDST3 is identified as a novel deacetylase for tubulin, and its newly recognized role in modulating microtubule acetylation and lysosomal acidification provides fresh insights into ND therapeutic approaches using NDST3 as a target. Microtubule acetylation and lysosomal acidification have been reported to be critical for (...) activities in neurons, implying that the regulators of these two biological processes, such as the previously known microtubule deacetylases, histone deacetylase 6 (HDAC6) and sirtuin 2 (SIRT2), could play important roles in various NDs. Aberrant NDST3 expression or tubulin acetylation has been observed in an increasing number of NDs, including amyotrophic lateral sclerosis and frontotemporal dementia (ALS/FTD), schizophrenia and bipolar disorder, Alzheimer's disease (AD), and Parkinson's disease (PD), suggesting that NDST3 is a key player in the pathogenesis of NDs and may serve as a target for development of new treatment of NDs. (shrink)

Sensorimotor synchronization, the coordination of physical actions in time with a rhythmic sequence, is a skill that is necessary not only for keeping the beat when making music, but in a wide variety of interpersonal contexts. Being able to attend to temporal regularities in the environment is a prerequisite for event prediction, which lies at the heart of many cognitive and social operations. It is therefore of value to assess and potentially stimulate SMS abilities, particularly in aging and neurocognitive disorders, (...) to understand intra-individual communication in the later stages of life, and to devise effective music-based interventions. While a bulk of research exists about SMS and movement-based interventions in Parkinson’s disease, a lot less is known about other types of neurodegenerative disorders, such as Alzheimer’s disease, vascular dementia, or frontotemporal dementia. In this review, we outline the brain and cognitive mechanisms involved in SMS with auditory stimuli, and how they might be subject to change in healthy and pathological aging. Globally, SMS with isochronous sounds is a relatively well-preserved skill in old adulthood and in patients with NCDs. At the same time, natural tapping speed decreases with age. Furthermore, especially when synchronizing to sequences at slow tempi, regularity and precision might be lower in older adults, and even more so in people with NCDs, presumably due to the fact that this process relies on attention and working memory resources that depend on the prefrontal cortex and parietal areas. Finally, we point out that the effect of the severity and etiology of NCDs on sensorimotor abilities is still unclear: More research is needed with moderate and severe NCD, comparing different etiologies, and using complex auditory signals, such as music. (shrink)

The eighteenth century debate between moral rationalists and moral sentimentalists has seen a striking renaissance in the past decades, not least because of research into the nature of moral judgement conducted by empirical scientists such as social and developmental psychologists and neuroscientists. A claim that is often made in the current discussion is that the evidence made available by such empirical investigations refutes rationalist conceptions of moral judgement and vindicates the views of Hume or other moral sentimentalists. For example, Jesse (...) Prinz and Hanno Sauer have recently argued that the available data demonstrates that emotions are both necessary and sufficient for moral judgement and that the best or the only way to make sense of these findings is to conclude that moral judgements are constituted by emotions. The aim of this paper is to thoroughly examine this argument and the underlying empirical evidence and to show that there is currently no compelling evidence for the truth of either the necessity or the sufficiency thesis and that, even if both theses were true, they would fail to provide a sound basis for a plausible sentimentalist constitution claim. (shrink)

Amyotrophic lateral sclerosis (ALS; also called motor neuron disease) is a devastating medical condition that progressively robs patients of their ability to move, speak and eventually breathe. At present, many physicians are hesitant to propose tracheostomy and respiratory support in the terminal phase of ALS. In accordance with the principle of patient autonomy, physicians should respect the right of the ALS patient to accept or refuse any treatment, including mechanical ventilation. Also, in environments where euthanasia or physician-assisted death is legal, (...) such requests can be acceptable. At least two conditions are necessary for full autonomy. To have a claim on full autonomy, people need to have intact cognitive abilities, and to exercise this right they must be able to communicate. In the past, the first condition was in doubt (indeed, overlap with other neurodegenerative diseases is sometimes suspected and some patients with ALS are thought to have associated frontotemporal dementia) and the second was severely compromised in patients with devastating motor impairment (communication being limited to the twitch of a finger or the blink of an eye). In this issue of J Neurol Neurosurg Psychiatry, Lakerveld and colleagues1 investigated cognition in 11 patients with late stage ALS (see page 25). They showed preserved cognitive functioning (ie, language, executive function, intelligence, learning and long term memory) compared with healthy controls. Assessments were exclusively based on a ‘‘yes–no’’ response mode. Because of the absence of verbal and motor communication, the neuropsychological assessment of these patients is complicated, and adapted testing is needed. By using a ‘‘yes–no’’ response mode based on the remaining motor abilities of the patient, this study proves the possibility of assessing patients with minimal motor capacities. (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)

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)

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.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)

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)

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)

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

This 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)

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)

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 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)

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)

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)

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)

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)

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)

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)

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)

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

Dementia is a growing issue at the end of life that presents unique challenges for advance care planning. Advance directives are a useful and important component of end-of-life planning, but standard advance directives have less utility in cases of loss of capacity due to dementia. An advance directive designed to specifically address end-of-life issues in the setting of dementia can provide patients with increased autonomy and caregivers with improved information about the desires of the individual in question. (...) The Dartmouth Dementia Directive is a dementia-specific advance directive, available online, that seeks to address common concerns of individuals who are planning for dementia-related end-of-life care. This directive was piloted in a community-based workshop, which provided important details and perspective on the best use of dementia-specific advance directives in the greater population. (shrink)

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