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

Dementia has rapidly become a major global health crisis. As the aging population continues to increase, the burden increases commensurately on both individual and societal levels. The behavioral and psychological symptoms of dementia are a prominent clinical feature of Alzheimer’s disease and related dementias. BPSD represent a myriad of manifestations that can create significant challenges for persons living with dementia and their care providers. As such, BPSD can result in detriments to social interaction with others, resulting in (...) harm to the psychosocial health of the person with dementia. While brain deterioration can contribute to BPSD as the disease progresses, it may be confounded by language and communication difficulties associated with ADRD. Indeed, when a person with dementia cannot effectively communicate their needs, including basic needs such as hunger or toileting, nor symptoms of pain or discomfort, it may manifest as BPSD. In this way, a person with dementia may be attempting to communicate with what little resources are available to them in the form of emotional expression. Failing to recognize unmet needs compromises care and can reduce quality of life. Moreover, failing to fulfill said needs can also deteriorate communication and social bonds with loved ones and caregivers. The aim of this review is to bring the differential of unmet needs to the forefront of BPSD interpretation for both formal and informal caregivers. The overarching goal is to provide evidence to reframe the approach with which caregivers view the manifestations of BPSD to ensure quality of care for persons with dementia. Understanding that BPSD may, in fact, be attempts to communicate unmet needs in persons with dementia may facilitate clinical care decisions, promote quality of life, reduce stigma, and foster positive communications. (shrink)

Volume 20, Issue 8, August 2020, Page 101-104.

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 increasing age of the patient population around the globe and in the United States has resulted in a growing number of patients with dementia. In this manuscript, we examined the role of the ethics consultation service in patients who have dementia and associated cognitive and neuropsychiatric sequelae. We addressed a particularly challenging case presenting with behavioral and psychological symptoms of dementia. We discussed the ethical questions and challenges considered by the ethics consultation service and compared these (...) with current suggestions and expectations from the research literature regarding the role of ethics consultation service in dementia management. We demonstrated two potentially useful approaches of clinical ethical analysis, the principalist theorem and Jonsen's four quadrants approach. While the number of consults in patients with behavioral and psychological symptoms of dementia is likely to increase in clinical ethics, the role of the ethics consultation service in this cohort of patients still remains to be determined. There are significant gaps in understanding of the ethics consultation service role in dementia management, and much work remains to be undertaken on the part of regulatory and healthcare systems in clarifying their roles, expectations, and competencies. (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)

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)

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)

Advance directives permit competent adult patients to provide guidance regarding their care in the event that they lose the capacity to make medical decisions. One concern about the use of advance directives is the possibility that, in certain cases in which a patient undergoes massive psychological change, the individual who exists after such change is literally a (numerically) distinct individual from the person who completed the directive. If this is true, there is good reason to question the authority of the (...) directive Ð which is supposed to apply to the individual who completed it, not to someone else. This is `the someone else problem'. After briefly introducing advance directives as a basis for medical decision-making, this paper elaborates `the someone else problem' in the context of severe dementia. The paper then reconstructs the reasoning that leads to this putative problem and exposes the important underlying assumption that we are essentially persons. An alternative view of what we are, one that regards personhood as inessential, is then considered, before several arguments are advanced in favor of that alternative view. The paper next explores implications for advance directives: `The someone else problem' is effectively dissolved, while it is noted that a related problem (one beyond the paper's scope) may persist. A few implications beyond advance directives are also identified. (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)

ObjectiveTo determine the impact of the affiliate stigma on mental well-being of relatives caring for a person with dementia.DesignThe study was conducted in a cross sectional design.SettingThe study was conducted in a public setting, addressing relatives caring for a person with dementia.ParticipantsParticipants were relatives of patients with a formal diagnosis of dementia. Relatives were defined as caring or living closely to a patient. Participants were recruited with the help of care and welfare organizations.Outcome MeasuresThe main outcome measure (...) was the impact of the affiliate stigma on mental well-being of caring relatives.Results228 participants fully completed the survey. Women, relatives with a higher education and partners experienced more impact of the affiliate stigma on mental well-being than man, relatives with a lower education and relatives with another relationship to the person with dementia. The duration of dementia and the age of the caregiver had a clear significant effect on affiliate stigma.ConclusionThis study revealed that caregiver related features are predicting the presence of an affiliate stigma. Interventions to prevent or reduce the impact of this stigma might focus on these groups. Education about dementia and the impact on patients, relatives and the broader social context might alter the affiliate stigma surrounding dementia. (shrink)

In this paper, I critically examine Kitwood's account of personhood for people with dementia. His account has been influential in supporting appeals to personhood in both clinical and bioethical literature on dementia care. I demonstrate that Kitwood's account does not run into common objections against invoking personhood as a normative notion, namely, the objection of exclusionary implications and the objection of redundancy. I argue, however, that Kitwood's account suffers from two other major conceptual issues. These include (a) unreasonable (...) social contingency, and thus, precariousness, of his notion of personhood for people with dementia; and (b) insufficient theoretical connection between his account of personhood and his proposed list of indicators of well‐being for people with dementia. Despite these issues, I do not agree with the following view: that, in the context of dementia care, scholars should refrain from appealing to personhood considerations. Instead, I defend the view that while Kitwood fails to offer a compelling theoretical account of personhood of people with dementia, his empirically driven list of indicators of well‐being and his notion of malignant social phycology seem to be sensitive to key ethical considerations relevant to dementia care. I propose that we pursue alternative ways of explaining what is morally (un) desirable about them without (explicit) appeal to personhood. (shrink)

Objectives: Technology can assist and support both people with dementia and caregivers. Recently, technology has begun to embed remote components. Timely with respect to the pandemic, the present work reviews the most recent literature on technology in dementia contexts together with the newest studies about technological support published until October 2020. The final aim is to provide a synthesis of the timeliest evidence upon which clinical and non-clinical decision-makers can rely to make choices about technology in the case (...) of further pandemic waves.Methods: A review of reviews was performed alongside a review of the studies run during the first pandemic wave. PsycInfo, CINAHL, and PubMed-online were the databases inspected for relevant papers published from January 2010.Results: The search identified 420 articles, 30 of which were reviews and nine of which were new studies meeting the inclusion criteria. Studies were first sorted according to the target population, then summarized thematically in a narrative synthesis. The studies targeting technologies for PWD were categorized as follows: monitoring and security purposes, sustaining daily life, and therapeutic interventions. Each category showed potential benefits. Differently, the interventions for caregivers were classified as informative, psycho-education programs, psychosocial-supportive, therapeutic, and cognitive/physical training. Benefits to mental health, skills learning, and social aspects emerged.Conclusions: The evidence shows that technology is well-accepted and can support PWD and caregivers to bypass physical and environmental problems both during regular times and during future pandemic waves. Nevertheless, the lack of a common methodological background is revealed by this analysis. Further and more standardized research is necessary to improve the implementation of technologies in everyday life while respecting the necessary personalization. (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)

The aim of our research is to explore how Alzheimer’s disease and dementia are represented in the Slovak media. Data consisted of text documents from the Newton media database. Search criteria included TV, radio, print and web sources that mentioned the words “Alzheimer” and “dementia” between 2015 and 2018. A thematic discourse analysis was applied in order to identify the themes and their mutual semantic relations. The analysis was focused primarily on the headlines (n = 227). The results (...) show that the biomedical perspective currently dominates at the expense of a socio-psychological one. Persons with Alzheimer’s disease and dementia are represented as tragic cases and victims of a cruel disease. Responsibility for care and prevention is individualized. Our findings suggest that a new perspective is needed. Such an approach should recognize the dignity and humanity of persons with Alzheimer’s disease and dementia despite their cognitive deficits and respect their socio-psychological needs. (shrink)

ObjectivesThe present study explores the effect of visual art training on people with dementia, utilizing a randomized control trial design, in order to investigate the effects of an 8-week visual art training program on cognition. In particular, the study examines overall cognition, delayed recall, and working memory, which show deficits in people with dementia.MethodFifty-three individuals with dementia were randomly assigned into either an art training or usual-activity waitlist control group. Overall cognition and delayed recall were assessed with (...) the Montreal Cognitive Assessment, and working memory was assessed with the Backward Digit Span task.ResultsThere were no group differences in overall cognition, or working memory, while a difference in delayed recall was undetermined, based on post-test—pre-test difference scores. Groups were comparable at baseline on all measures.ConclusionThe measures of cognition, delayed recall, and working memory used in this study were not affected by an 8-week visual art training program.Clinical Trial Registrationwww.ClinicalTrials.gov, identifier NCT03175822. (shrink)

What are the vehicles of conceptual thought? Recently, cognitive scientists and philosophers of psychology have developed quite different theories about what kinds of representations concepts are. At one extreme, amodal theories claim that concepts are representations whose vehicles are distinct from those used in perceptual processes. At the other end of the spectrum, neo-empiricism proposes that concepts are perceptual representations grounded in the mind's sensory, motor, and affective systems. In this essay, I examine how evidence from the neuropsychological disorder (...) semantic dementia bears on philosophical debates about the nature of conceptual vehicles. I argue that the pattern of deficits in semantic dementia undermines recent neo-empiricist predictions about where and how conceptual knowledge is organized in the brain. I do not intend my analysis of semantic dementia to wholly discredit neo-empiricism; instead, I draw lessons for future theorizing about conceptual vehicles. (shrink)

In this paper I consider, in connection with dementia, two views of the person. One view of the person is derived from Locke and Parfit. This tends to regard the person solely in terms of psychological states and his/her connections. The second view of the person is derived from a variety of thinkers. I have called it the situated-embodied-agent view of the person. This view, I suggest, more readily squares with the reality of clinical experience. It regards the person (...) as embedded in a history and culture. The human person is also an embodied agent. I contend that this view encourages a more appropriate approach towards the ethical issues that arise in dementia and towards people with dementia. (shrink)

The aim of this article is to explore how metaphor is mobilized to frame and describe the lived experience of dementia in a corpus of illness narratives compiled from 10 blogs initiated and maintained by individuals diagnosed with early-onset dementia. The article is set against the background of contemporary healthcare practices and discourse around chronic illness and focuses on the metaphors that patients use to communicate about their dementia experience in relation to three basic psychological needs: autonomy, (...) competence and relatedness, which are essential for human well-being and are heavily challenged in complex medical situations. Results are discussed in terms of the framing metaphors provide of the emotional, psychological impact of dementia and their implications for patient-centered care. This study expands prior work by researching metaphors used for a condition that has been scarcely explored from this point of view and by focusing on the patient’s perspective exclusively. (shrink)

Recent evaluation of the practice of euthanasia and related medical decisions at the end of life in the Netherlands has shown a slight decrease in the frequency of physician-assisted death since the enactment of the Euthanasia Law in 2002. This paper focuses on the absence of euthanasia cases concerning patients with dementia and a written advance euthanasia directive, despite the fact that the only real innovation of the Euthanasia Law consisted precisely in allowing physicians to act upon such directives. (...) The author discusses two principal reasons for this absence. One relates to the uncertainty about whether patients with advanced dementia truly experience the suffering they formerly feared. There is reason to assume that they don’t, as a consequence of psychological adaptation and progressive unawareness (anosognosia). The second, more fundamental reason touches upon the ethical relevance of shared understanding and reciprocity. The author argues that, next to autonomy and mercifulness, “reciprocity” is a condition sine qua non for euthanasia. The absence thereof in advanced dementia renders euthanasia morally inconceivable, even if there are signs of suffering and notwithstanding the presence of an advance euthanasia directive. This does not mean, however, that advance euthanasia directives of patients with dementia are worthless. They might very well have a role in the earlier stages of certain subtypes of the disease. To illustrate this point the author presents a case in which the advance directive helped to create a window of opportunity for reciprocity and shared decision-making. (shrink)

A persistent question in discussions of the ethics of advance directives for euthanasia is whether patients who go through deep psychological changes retain their identity. Rather than seek an account of identity that answers this question, I argue that responsible policy should directly address indeterminacy about identity directly. Three sorts of indeterminacy are distinguished. Two of these—epistemic indeterminacy and metaphysical indeterminacy—should be addressed in laws/policies regarding advance directives for euthanasia.

The prevalence of dementia is increasing with the ever-growing population of older adults. Non-pharmacological, music-based interventions, including sensory stimulation, were reported by the Lancet Commission in 2020 to be the first-choice approach for managing the behavioural and psychological symptoms of dementia. Low frequency sinusoidal vibration interventions, related to music interventions through their core characteristics, may offer relief for these symptoms. Despite increasing attention on the effectiveness of auditory music interventions and music therapy for managing dementia, this has (...) not included low frequency vibration. This scoping review, following the JBI methodology guidelines, was conducted to investigate participants’ responses to both sound and mechanical vibration, the characteristics of the delivered interventions, methodological challenges, and the specifics of the research experiments reported. An extensive search was conducted in BMC, CINAHL, Cochrane Central Register of Controlled Trials, EMBASE, ERIC, MEDLINE, Pedro, ProQuest Central, PsycINFO, Scopus, and Web of Science. Current Controlled Trials, Clinical Trials, and Google Scholar were also searched as well as a hand search in relevant journals. Studies on adults with all types of dementia, investigating tactile low frequency sound or mechanical vibration in any context were considered. Data from eight full-length studies were extracted using the data extraction table developed by the authors and were included in the analysis and critical appraisal. Issues in quality related to, for example, control groups and blinding. Few studies addressed participants’ subjective responses to the interventions. Reporting on the intervention characteristics was unclear. It appeared more frequent sessions led to better outcomes and home-based interventions potentially addressing the issue of access and feasibility. Future research should include neuroimaging to measure and confirm the hypothesised mechanism of cerebral coherence. Standardised reporting of intervention characteristics is also needed to ensure replicability of the experiments. Higher quality research is needed to investigate the impact and effect of low frequency vibration for the symptoms of dementia and compare outcomes in meta-syntheses. (shrink)

The study aimed to examine the influence of personal characteristics on activity preferences using decision tree analysis and examine the effects of the variables using conventional approaches. A descriptive study was conducted with 251 nursing home residents with dementia in Korea to examine the relationship between their personal characteristics and activity preferences. Decision tree analysis was used to classify participants’ activity preferences, and preference levels were examined using logistic regression analysis. Activities were classified as either physical and social activities (...) or cognitive and affective activities. This model showed an accuracy rate of 85.7% for positively predicting physical and social activity preference and 30.3% for positively predicting cognitive and affective activity preference. Gender was the strongest determinant of activity preference. The odds of preferring physical and social activities were 3.179 times higher among women, while the odds for preferring cognitive and affective activities were 0.412 times higher among men. Notably, cognitive and affective activity preference increased to 58.8% for married male participants. This study’s findings can contribute to the development of programs to decrease behavioral and psychological symptoms among older people with dementia residing in nursing homes and provide scientific evidence for integrating these activities into long-term services for this population. (shrink)

Fear is often seen as pathological, to be eliminated by expensive emotion-damping pharmaceuticals that have drastic side effects. Such therapies have indiscernible long-term success since they ignore why we have brains. This paper offers a new fundamental theory based on recognising that mental illness is bad decisionmaking—bad risk processing of external stimuli. Whiffs of danger—small risks —generate little fears and hopes of whether an act will have a nice or nasty surprise. From enough whiffs of danger with rapid reliable feedback (...) on whether the surprise is nice or nasty, and in adequate variety children learn the difference between luck and sensible choice, and adults maintain adequate decisionmaking—the author’s ‘whiffs of danger’ theory. Lack of whiffs constitutes risk starvation and can arise from under-challenge or over-challenge. Boys’ ADHD springs from under-challenge in physical risks—the digital seduction—and over-challenge in mental, psychological, social risks—by faster maturing schoolgirls as teachers quit traditional boy favouritism. Boys’ IQ/maturity over-challenge could be cut by: appropriate pre-school care; single sex schools or in co-ed schools boys’ school entry postponed so one year older than their female classmates; and boys praised for expressions of fears, hopes, not for emotion-damped macho utterances. Under-challenge underlies some panic attacks and epileptic fits, and a high proportion of depressions and dementias. Like schoolboys’ physical under-challenge, these under-challenges are reducible by compensating societal changes. (shrink)

The use of doll therapy for people with dementia has been emerging in recent years. Providing a doll to someone with dementia has been associated with a number of benefits which include a reduction in episodes of distress, an increase in general well-being, improved dietary intake and higher levels of engagement with others. It could be argued that doll therapy fulfils the concepts of beneficence and respect for autonomy. However, some may believe that doll therapy is inappropriate when (...) applied to the concepts of dignity and non-maleficence. The absence of rigorous empirical evidence and legislative guidelines render this a therapy that must be approached cautiously owing to the varied subjective interpretations of Kitwood’s ‘malignant social psychology’ and bioethics. This article suggests that by applying a ‘rights-based approach’, healthcare professionals might be better empowered to resolve any ethical tensions they may have when using doll therapy for people with dementia. In this perspective, the internationally agreed upon principles of the United Nations Convention on the Rights of Persons with Disabilities provide a legal framework that considers the person with dementia as a ‘rights holder’ and places them at the centre of any ethical dilemma. In addition, those with responsibility towards caring for people with dementia have their capacity built to respect, protect and fulfil dementia patient’s rights and needs. (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)

Alzheimer’s disease is an insidious onset neurodegenerative syndrome without effective treatment or cure. It is rapidly becoming a global health crisis that is overwhelming healthcare, society, and individuals. The clinical nature of neurocognitive decline creates significant challenges in bidirectional communication between caregivers and persons with Alzheimer’s disease that can negatively impact quality-of-life. This paper sought to understand how and to what extent would awareness training about the levels of consciousness in AD influence the quality-of-life interactions in the caregiver-patient dyad. A (...) literature review of multiple databases was conducted utilizing a transdisciplinary approach. The sum of findings indicates a positive relationship between enhanced caregiver awareness and training, positive interactions, and improved QOL measures among patients and caregivers. A multidirectional relationship was found among healthcare policies, training and education resources, caregivers, and persons with AD. Specifically, the current lack of policy and inadequate training and educational resources has various detrimental effects on patients and caregivers, while improvements in training and education of caregivers yields positive outcomes in communication and QOL. Furthermore, evidence of preserved consciousness in persons with AD was demonstrated from multiple disciplines, including neurobiological, psychological, and biopsychosocial models. The literature further revealed several methods to access the preserved consciousness in persons with AD and related dementias, including sensory, emotional, and cognitive stimulations. The evidence from the literature suggests a reframed approach to our understanding and treatment of persons with AD is not only warranted, but crucial to address the needs of those affected by AD. (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)

Apathy and depression are frequently observed as behavioral and psychological symptoms of dementia, respectively, and are important for ensuring adequate care. This study aims to explore effective non-pharmacological interventions for apathy and depression with mild cognitive impairment and dementia. Five search engines including PubMed, Scopus, CINAHL, PsycInfo, and Web of Science were used to extract relevant studies. Inclusion criteria were studies that involved participants who were diagnosed with MCI or dementia, included quantitative assessments of each symptom, and (...) employed randomized controlled trials. Twenty studies were extracted, with interventions have been conducted in care facilities, the community, and hospitals. Participants in many studies had MCI or mild-to-moderate dementia but were not diagnosed with the subtypes of dementia. Few studies had set apathy and depression as the primary outcomes of non-pharmacological interventions. The findings suggested that emotional and stimulation-oriented approaches to apathy and depression would be useful for people with MCI or mild-to-moderate dementia. It would be helpful for therapists to assess the clinical features of the target symptoms for selecting suitable interventions. Additionally, increasing the number of randomized controlled trials focusing on apathy or depression as primary outcomes would offer a more definite conclusion for future systematic reviews. (shrink)

It is ordinarily thought that in Alzheimer's dementia, memory loss leads to a loss of the self. There is a familiar sense in which this is true given that there is, evidently, a close connection between episodic memory and personal identity. This view goes back to John Locke who argued that remembering our own experiences enabled the continuity of consciousness he thought constitutive of personal identity. Locke was also motivated by the idea—to be applied in "forensic" contexts—that continuity of (...) consciousness was necessary in the appropriation of past actions as one's own. As we will see there is another type of connection between a person's psychology and morality—not involving questions of... (shrink)

It may soon be possible to diagnose neurodegenerative disorders, such as early onset Alzheimer's disease, with a high degree of accuracy well before these conditions become symptomatic. In a carefully argued and thought-provoking piece, Dena Davis maintains that preemptive suicide may be a rational option for those confronted with a preclinical diagnosis of impending dementia, and consequently that withholding the results of dementia research until effective treatments become available constitutes an unjustified infringement on patient autonomy. If suicide is (...) indeed a rational course of action for some people diagnosed with dementia, then contrary to received wisdom, biomarker information indicating a high risk of dementia may be ‘actionable’ even if there is no known treatment for the condition. Preemptive suicide, Davis argues, may be motivated and justified by a mixture of other-regarding and self-regarding considerations. These include, inter alia, the wish to avoid imposing significant financial or psychological hardships on one's family, the unwillingness to live without the capacities for meaningful independence or agency, and the desire to write a final chapter that is consistent with one's stable values and that does not distort or eclipse the overarching narrative of one's life. Dementia raises an ethical dilemma that does not arise in connection with other diseases with respect to which many believe suicide is a rational course of action. This dilemma arises from the fact that a person with impending dementia cannot wait until the disease takes hold to issue and carry out a decision to end his or her life, since dementia destroys the capacities that underpin rational decision-making. Because jurisdictions permitting suicide require, quite reasonably, that a …. (shrink)

This volume presents the ethical implications of risk information as related to genetics and other health data for policy decisions at clinical, research and societal levels. Ethical, Social and Psychological Impacts of Genomic Risk Communication examines the introduction of new types of health risk information based on faster, cheaper and larger sets of genetic or genomic analysis. Synthesising the results of a five-year interdisciplinary project, it explores the unsolved ethical and social questions around the sharing of this data, such as: (...) What is best practice in risk communication? What are the normative presumptions and ethical consequences of an increased individual responsibility for ones' health? And how does one deal with the gap between the knowledge of risk and the lack of therapeutic options which often exist for complex diseases, such as dementia or some types of cancer? Drawing on contributions from over twenty experts in the field, this collection examines these questions from a liberal bioethics' perspective, advocating for contextual and cultural-sensitive ethical discussions. This book will be of great interest to students and scholars of theoretical and clinical medical ethics, medical sociology, risk communication and ethics of risk, as well as professionals in clinical genetics. (shrink)

A diagnosis of dementia often comes with difficulties in understanding a conversational context and expressing how one feels. So far, research on how to facilitate advance care planning for people with dementia focused on defining relevant themes and topics for conversations, or on how to formalize decisions made by surrogate decision makers, e.g., family members. The aim of this review is to provide a better scope of the existing research on practical communication aspects related to dementia in (...) ACP conversations. In November 2020, seven databases were searched to select papers for inclusion. This search was updated in December 2021. The search strategy consisted of three tiers, intersected by using the Boolean term “AND,” and resulted in 787 studies. Two researchers followed explicit criteria for two sequential levels of screening, based on titles and abstracts and full papers. A total of 22 studies were included for data analysis. Seven topics emerged clustered around two themes. This scoping review provides practical suggestions for healthcare professionals to improve ACP communication and uncovered gaps in research on communication aspects related to dementia in ACP conversations, such as non-verbal behavior, timing and implementation, and personal preferences. (shrink)

Dementia, a prevalent disorder of the brain, has negative effects on individuals and society. This paper concerns using Spontaneous Speech Challenge of Interspeech 2020 to classify Alzheimer's dementia. We used VGGish, a deep, pretrained, Tensorflow model as an audio feature extractor, and Scikit-learn classifiers to detect signs of dementia in speech. Three classifiers were 59.1% accurate, which was 3% above the best-performing baseline models trained on the acoustic features used in the challenge. We also proposed DemCNN, a (...) new PyTorch raw waveform-based convolutional neural network model that was 63.6% accurate, 7% more accurate then the best-performing baseline linear discriminant analysis model. We discovered that audio transfer learning with a pretrained VGGish feature extractor performs better than the baseline approach using automatically extracted acoustic features. Our DepCNN exhibits good generalization capabilities. Both methods presented in this paper offer progress toward new, innovative, and more effective computer-based screening of dementia through spontaneous speech. (shrink)

The rising demographic of older adults worldwide has led to an increase in dementia cases. In order to ensure the proper allocation of care and resources to this clinical group, it is necessary to correctly distinguish between simulated versus bona-fide cognitive deficits typical of dementia. Performance Validity Tests are specifically designed to assess a lack of effort and the possible simulation of cognitive impairment. Previous research demonstrates that PVTs may be sensitive to dementia, thus inaccurately classifying real (...) memory impairment as simulation. Here, we analyzed the sensitivity of PVTs in discriminating between dementia and simulation using receiver operating characteristic curve analyses. Further, we examined the potential need for adjusting cut-off scores for three stand-alone and one embedded PVT for Portuguese older adults with dementia. The results showed that all measures, except for the Coin in Hand— Extended version, were sensitive to one or more sociodemographic and/or cognitive variables, and it was necessary to adjust cut-off points for all measures. Additionally, the Rey-15 Item Memory Test did not demonstrate sufficient discriminating capacity for dementia. These results present important implications for clinical practice and the daily life of patients, as the use of incorrect cut-off points could impede patients from getting the resources they need. (shrink)

Loneliness has been reframed from a ‘social problem of old age’ into a major public health problem. This transformation has been generated by findings from observational studies of a relationship between loneliness and a range of negative health outcomes including dementia. From a public health perspective, key to evaluating the relationship between loneliness and dementia is examining how studies define and measure loneliness, the exposure variable, and dementia the outcome. If we are not consistently measuring these then (...) building a body of evidence for the negative health outcomes of loneliness is problematic. Three key criteria had to meet for studies to be included in our analysis. To test the proposition that loneliness is a cause of dementia we only included longitudinal studies. For inclusion studies had to measure loneliness at baseline, have samples free of dementia and assess dementia at follow up. We identified 11 papers published between 2000 and 2018 that meet these criteria. These studies included seven different countries and only one was specifically focused upon dementia: all other studies were cohort studies focused upon ageing and health and wellbeing. There was extensive heterogeneity in how studies measured loneliness and dementia and in the use of co-variates. Loneliness was measured by either self-rating scales or scales. Dementia was assessed by clinical tests, diagnostic/screening tools, cognitive function tests, and self-reported doctor diagnosis. Substantial variation in loneliness prevalence and dementia incidence. Six studies did not report a statistically significant relationship between loneliness and dementia. Significant excess risk of dementia among those who were lonely ranged from 15% to 64%. None of these studies are directly comparable as four different loneliness and dementia measures were used. We suggest that the evidence to support a relationship between loneliness and dementia is inconclusive largely because of methodological limitations of existing studies. If we wish to develop this evidence base, then using a consistent set of loneliness and dementia outcome measures in major longitudinal studies would be of benefit. (shrink)

Background: There is a growing need to offer appropriate services to persons with mild cognitive impairment and dementia who are faced with depression and anxiety distresses beyond traditional pharmacological treatment. Dance-based interventions as multi-dimensional interventions address persons' physical, emotional, social, and spiritual aspects of well-being. However, no meta-analysis of randomized controlled treatment trials has examined the effectiveness of dance-based interventions on depression and anxiety among persons with MCI and dementia, and the results of RCTs are inconsistent. The study (...) aimed to examine the effectiveness of dance-based interventions on depression and anxiety among persons with MCI and dementia.Methods: A systematic review with meta-analysis was conducted. The inclusion criteria were: population: people of all ages with MCI and dementia; intervention: dance-based interventions; control group: no treatment, usual care, or waiting list group; outcome: depression and anxiety; study design: published or unpublished RCTs. Seven electronic databases were searched from 1970 to March 2021. Grey literature and reference lists from relevant articles were also searched and reviewed. The Cochrane “Risk of Bias” tool was used to assess study quality. RevMan 5.4 was used for meta-analysis and heterogeneity was investigated by subgroup and sensitivity analysis. GRADE was applied to assess the evidence quality of depression and anxiety outcomes.Results: Five randomized controlled trials were identified. Sample sizes ranged from 21 to 204. The risk of bias was low, except for being rated as high or unclear for most included studies in two domains: allocation concealment, blinding participants and personnel. Meta-analysis of depression outcome showed no heterogeneity, indicating that the variation in study outcomes did not influence the interpretation of results. There were significant differences in decreasing depression in favor of dance-based interventions compared with controls [SMD = −0.42, 95% CI, p < 0.0001] with a small effect size ; Compared with the post-intervention data, the follow-up data indicated diminishing effects. Dance-based interventions were more effective in reducing depression for persons with dementia than with those having MCI, and were more effective with the delivery frequency of 1 h twice a week than 35 min 2–3 times a week. Also, one included RCT study showed no significant benefit on anxiety rating scores, which demonstrated small effect sizes at 6 weeks and 12 weeks. GRADE analysis indicated the evidence quality of depression was moderate, and the evidence quality of anxiety was low.Conclusions: Dance-based interventions are beneficial to alleviate depression among persons with MCI and dementia. More trials of high quality, large sample sizes are needed to gain more profound insight into dance-based interventions, such as their effects of alleviating anxiety, and the best approaches to perform dance-based interventions. (shrink)

IntroductionIncorporating technology in cognitive interventions represents an innovation, making them more accessible, flexible, and cost-effective. This will not be feasible without adequate user-technology fit. Bearing in mind the importance of developing cognitive interventions whose technology is appropriate for elderly people with cognitive impairment, the objective of this systematic review was to find evidence about usability and user experience measurements and features of stimulation, training, and cognitive rehabilitation technologies for older adults with mild cognitive impairment or dementia.MethodThe Medline, PubMed, Scopus, (...) ScienceDirect, and PsycINFO databases were searched for literature published in the last 10 years, and three researchers independently reviewed potentially eligible studies, following specific inclusion criteria. A systematic review of the studies was conducted, presenting a qualitative synthesis of usability and UX measures with their outcomes, study characteristics and features of the cognitive intervention technologies.ResultsTen studies were selected: five were cognitive stimulation and five were cognitive training. Most of them were computer-based programs with a serious game format. Efficiency and effectiveness were the most frequent measurements used for collecting objective usability data, showing that elderly people with cognitive impairment require more time and help but can complete tasks. Regarding UX or subjective usability data, questionnaires and scales were the most used methods, reporting positive experience despite certain difficulties with the interface in five studies.ConclusionMeasuring usability and UX in cognitive intervention technologies for older adults with MCI or dementia provides an integrated view that can contribute to their development according to the needs and characteristics of the target population. More research is required to include this population group in usability and UX studies, as well as standardized tools and consensus on the relationship of these terms to guarantee the future effectiveness of cognitive intervention technologies.Review registrationThis review was registered in the PROSPERO International Register of Systematic Review Protocols. (shrink)

Before COVID-19, dementia singing groups and choirs flourished, providing activity, cognitive stimulation, and social support for thousands of people with dementia in the UK. Interactive music provides one of the most effective psychosocial interventions for people with dementia; it can allay agitation and promote wellbeing. Since COVID-19 has halted the delivery of in-person musical activities, it is important for the welfare of people with dementia and their carers to investigate what alternatives to live music making exist, (...) how these alternatives are delivered and how their accessibility can be expanded. This community case study examines recent practice in online music-making in response to COVID-19 restrictions for people with dementia and their supporters, focusing on a UK context. It documents current opportunities for digital music making, and assesses the barriers and facilitators to their delivery and accessibility. Online searches of video streaming sites and social media documented what music activities were available. Expert practitioners and providers collaborated on this study and supplied input about the sessions they had been delivering, the technological challenges and solutions they had found, and the responses of the participants. Recommendations for best practice were developed and refined in consultation with these collaborators. Over 50 examples of online music activities were identified. In addition to the challenges of digital inclusion and accessibility for some older people, delivering live music online has unique challenges due to audio latency and sound quality. It is necessary to adapt the session to the technology's limitations rather than expect to overcome these challenges. The recommendations highlight the importance of accessibility, digital safety and wellbeing of participants. They also suggest ways to optimize the quality of their musical experience. The pandemic has prompted innovative approaches to deliver activities and interventions in a digital format, and people with dementia and their carers have adapted rapidly. While online music is meeting a clear current need for social connection and cognitive stimulation, it also offers some advantages which remain relevant after COVID-19 restrictions are relaxed. The recommendations of this study are intended to be useful to musicians, dementia care practitioners, and researchers during the pandemic and beyond. (shrink)

BackgroundThe wellbeing of people living with dementia and their family caregivers may be impacted by stigma, changing roles, and limited access to meaningful opportunities as a dyad. Group therapeutic songwriting and qualitative interviews have been utilized in music therapy research to promote the voices of people with dementia and family caregivers participating in separate songwriting groups but not together as dyads.ProceduresThis study aimed to explore how ten people with dementia/family caregiver dyads experienced a 6-week group TSW program. (...) Dyads participated in homogenous TSW groups involving 2–4 dyads who were either living together in the community or living separately because the person with dementia resided in a care home. The TSW program, informed by personhood, couplehood, family centered and group process frameworks, involved creating original lyrics through song parody and song collage. Qualified Music Therapists facilitated sessions and interviewed each dyad separately. Interviews were analyzed using interpretative phenomenological analysis.FindingsFive recurrent group themes were developed, indicating group TSW: was a positive shared experience, benefiting both members of the dyad and motivating further engagement with music; stimulated mental processes and reignited participants’ interests and skills; provided meaningful opportunities for reflection and connection with memories and life experiences; and prompted interaction and collaboration, leading to social connections, empathic relationships and experiences of inclusion. Participants also highlighted how: the facilitated process supported engagement, highlighting abilities and challenging doubts.ConclusionDyads identified group TSW as an opportunity to recognize strengths, voice ideas and opinions, share meaningful experiences, and do “more with music.” Participants valued TSW as a new, creative and stimulating experience that enabled connection with self and others and led to feelings of pride and achievement. Our findings further recognize how therapeutic intention and approach were reflected in participants’ engagement and responses regardless of dementia stage and type, dyad relationship, or musical background. This research may broaden perspectives and expand understanding about how people with dementia and their family caregivers access and engage in music therapy. (shrink)

The objectives of the present study were to adapt a grief intervention program to family caregivers of patients with dementia, and assess its effectiveness in improving the symptoms of grief and other health-related variables. The intervention was based on Shear and Bloom's grief intervention program, with the necessary adaptations for use in the grieving process for a family member's illness. A total of 52 family caregivers of individuals with dementia participated. They were evaluated using a battery of self-report (...) measures assessing grief, overload, resilience, post-traumatic growth, experiential avoidance, health-related quality of life, and benefits of care. The results suggest that the program is effective in improving grief symptoms, caregiver burden, resilience, post-traumatic growth, and quality of life of family caregivers. It is necessary to create and implement interventions targeting caregivers' feelings and manifestations of ambiguous grief, because there is a lack of programs providing an efficient solution for the mental and physical health of caregivers, and because of the human and socioeconomic cost involved in neglecting this group. (shrink)