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

This essay examines the goals of care and the exercise of guardianship authority in the long-term care of persons with Alzheimer's disease and other forms of chronic, progressive dementia. It counters philosophical views that deny both agency and personhood to individuals with Alzheimer's on definitional or analytic conceptual grounds. It develops a specific conception of the quality of life and offers a critique of hedonic conceptions of quality of (...) life and models of guardianship that are based on a hedonic legal standard of “best interests.” As an alternative, it proposes a conception of quality of life based on the notions of “semantic agency” and “memorial personhood.”. (shrink)

Threats to the self and personhood of people with ADRD include the disturbing images of Alzheimer’s disease as the death before death, culturally based assumption that status as a full human being is dependent upon cognition and memory, and a decrease in personal possessions with a move to a 24-h care setting. This paper presents the findings of an ethnographic study of self and personhood in Alzheimer’s disease in an American long-term care facility. It (...) argues that the lifeworld in which the self and personhood of individuals with ADRD is actualized is mediated and negotiated through engagement with everyday objects. Using a framework that integrates Material Engagement Theory with Bourdieu’s Practice Theory, it is argued that the study of the material engagement of individuals with ADRD can lead to a better understanding of the lives of individuals with ADRD by focusing on the material and non-discursive aspects of objects. Findings contribute to the understanding of current practice issues in dementia care while shifting the focus away from exclusively biomedical understanding. Paradoxically, people with ADRD, due to their cognitive impairment, may provide us with a more fundamental way to understand the importance of objects in the lives of humans in general. (shrink)

Only a few studies explore the lifeworld of the spouses of persons affected by early-onset Alzheimer disease. The aim of this study is to explore the lifeworld of spouses when their partners are diagnosed with AD, focusing on spouses’ lived experience. The study employs an interpretative phenomenological framework. Ten in-depth interviews are performed. The results show that spouses’ lifeworld changes with the diagnosis. They experience an imprisoned existence in which added obligations, fear, and worry keep them (...) trapped at home, both physically and mentally. In their longing for freedom, new strategies and attitudes helps the spouses to create an extended “lived space” with their partner. The findings stress the importance of paying attention to the lifeworld of spouses and making clinical recommendations on this basis. Most importantly, the lifeworld perspective has implications for how we understand what care is. We hope to challenge all different healthcare professionals and invite them to discuss the deep meaning of care and the definition of being professional in encounters with vulnerable others from a lifeworld perspective. (shrink)

The article focuses on the impact of the concept of self-care on persons who are understood as incapable of self-care due to their physical and/or mental ‘incapacity’. The article challenges the idea of this health care concept as empowerment and highlights the difficulties for persons who do not fit into this concept. To exemplify this, the self-care concept is discussed with regard to persons with Alzheimer’s disease (AD). In the case (...) of persons with AD, self-care is interpreted in many different ways—depending on the point of view, for instance as an affected person or a carer. To prevent a marginalisation of the growing group of elderly persons with dementia, the article argues that concepts such as those of personhood, wellbeing, autonomy, rationality and normality have to be re-thought with regard to an increasingly ageing population. Taking into account that AD as a socio-medical construct has to be understood in the context of power relations, the article focuses on the mutual influence between the concepts of self-care and of AD and its possible impact on governing dementia and AD in particular. Michel Foucault’s considerations on ‘technologies of the self’ provide the basis for the discussion of the self-care concept within existing societal power relations. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Alzheimer's Disease, Aging, Chance, and RaceAtwood D. Gaines (bio)KeywordsAlzheimer’s disease, chance, mild cognitive impairment, racism, social constructionsThomas Kirkwood's comments are a welcome, articulate detailing of how and why we age with special reference to the brain. As well, his paper indicates clearly that processes reified as pathology and disease, such as Alzheimer's disease (AD), are in fact common and inevitable as the (...) human brain ages. Doubtless, this is the reason that aging is by far the greatest risk factor for the development of AD. A key notion, briefly mentioned by Kirkwood, is that of chance. He points out that, "cells (will be) burdened with protein aggregates and similar materials that will increase with aging. Once again, which cells will experience this fate and which will continue to function healthily is strongly influenced by chance" (Kirkwood 2006, 80–81). This mention of chance is most important for our paper, "Building a Mystery," and for an understanding of science as well. In "Building a Mystery," Peter Whitehouse and I sought to show that the history of AD was not inevitable and demonstrates a variety of chance and singular decisive occurrences of encounters, interpretations, social movements, government initiatives, and technological developments. Such decisive moments do not occur by virtue of some (natural) lawful process that is unfolding, but rather, these are chance events that could have happened in other ways. Indeed, science has been viewed as human attempts to "tame chance" (Hacking 1990). However, it often does so by sleight of hand, misinterpretation, and the biomedical discourse of hope. Increasingly, we are learning that chance is a commonality, not a rarity, in social and biological domains. The biomedical approach assumes the opposite. For example, it seeks to tame the chance appearance of AD in the case of Auguste D, and does so in part by reifying differences that exist, as Kirkwood notes, along a continuum rather than as the discrete entities implied by the labels Alzheimer's disease or mild cognitive impairment (MCI).We thus stand with Kirkwood's bold recognition of chance (see also Kirkwood 2003) in the biological domain and have applied the same idea to the social domain in which we consider the practice of biomedical science. We have elsewhere emphasized consensus statements in the making of AD (Gaines and Whitehouse 1998). In the present article, we add a number of other chance, decisive sociocultural moments to the mix of social processes producing AD and MCI. We have not considered in detail here a host of cultural features in the theory and practice of biomedicine with respect to AD. These include implicit, yet highly [End Page 83] implicative, cultural notions of bilateral kinship employed in genetic research on AD considered elsewhere (Gaines 1998).Bavidge's comments are cogent as well. With respect to the notion of my concept of the local biology of "race" (Gaines 2005), it is germane to point out here that such culturally constructed biologies are relevant to a discussion of AD and other dementias. Such constructions represent culture in science. We used the dramatic example of "race" in US biomedicine because it is experiencing a resurgence as an explanatory tool. For example, recently Haiman et al. (2006) presented research that suggests that "Among cigarette smokers, African Americans and native Hawaiians are more susceptible to lung cancer than whites, Japanese Americans and Latinos." The authors assert, as have many US studies, that their findings show differences relate to the alleged biology of the social groups concerned. Their problem and that of others, is that the groups are social, not biological, and most have mixed ancestry and do not stem from distinct groups. This is particularly true of African Americans and Latinos; both groups are substantially composed of individuals with European, West African, and Native American ancestry in widely varying proportions (Gaines 2005). Thus, they are different only in terms of their classification. Such work regularly overlooks influences, such as environmental racism, discrimination, poverty, and a lack of medical care, as well as other practices. These might include, in a study of smoking, pakalolo smoking (local marijuana) among Hawaiians, who themselves are usually part Portuguese, Japanese, Chinese, and or European... (shrink)

As the title of the article suggests, “The Burqa Ban”: Legal Precursors for Denmark, American Experiences and Experiments, and Philosophical and Critical Examinations, the authors embark on a factually investigative as well as a reflective response. More precisely, they use The 2018 Danish “Burqa Ban”: Joining a European Trend and Sending a National Message (published as a concurrent but separate article in this issue of INTERNATIONAL STUDIES JOURNAL) as a platform for further analysis and discussion of different perspectives. These include (...) case-law at the international level while focusing attention on recent rulings and judicial reasoning by the ECtHR and the ECJ; critical thought-experiments in religion, morality, human rights, and the democratic public space; a contextualized account of burqa-wearing interventions by federal and state governments and, moreover, various courts in the United States; and philosophical commentary and, in some instances, criticism of the Danish and/or European (French, etc.) approach. The different contributions have different aims. The section on case-law at the international level reports on those central judgments that, in effect, helped to pave the path for the Kingdom of Denmark’s burqa ban. Concerning the concurring judges at the ECtHR, the opinions served to uphold a preexisting ban and to grant a wide margin of appreciation to the national authorities, thereby limiting the Court’s own review. -/- As regards to the ECJ, the legality of company rules that contain a policy of neutrality for the workplace was examined, with a similar outcome. The authors who discuss religion, morality, human rights and the democratic public space are endeavoring to, respectively, appeal to ethics as a testing stone for law and to both challenge and address several forms of “expressivist worry” in connection with face veils. In doing so, the authors ask a number of thought-provoking questions that hopefully will inspire public policymakers to careful analysis. While the section that is devoted to American perspectives highlights a comprehensive survey of political and legal responses to, in particular, full-face veils like the burqa, the relevant author also incorporates public perceptions and, in the course of examining these, draws a parallel to “the fate” of the hoodie. The constitutionality of burqa-wearing in America, so it also appears, is partially an open question, but differentiating between religious, political, or personal reasons is a de jure premise. Given that the Danish legislators who drafted law L 219 to ban burqa-wearing in public places rely on a reference to political Islam, they relegate religious and personal reasons to the private domain, thereby also adopting secularism as a premise. This is explored in the last author response of the article, more precisely, in an account of the underlying materialism that, in turn, is applied to Muslim women. If policymakers and legislators engaged in Thinking Things Through exercises, they could, as a minimum, avoid law-making strategies that are not in the spirit of the theory they themselves invoke, albeit tacitly. While the aim of, as it were, arresting culturally self-contradicting legislators is unique for the section in question, all the authors who contribute to the joint research project have one end-goal in common, namely to inform about important perspectives while at the same time opening up for parameters for (more) fruitful, constructive and (if need be) critical debate in the future. With this in mind, four recommendations are presented by the research director for the project. Legally, politically, socially and culturally, conflict-resolution should not translate the relationship between rulers and the ruled into a separation ideology, an instance of controllers versus the controlled. All things being equal, that is the objective limit for a democratic society. (shrink)

We conducted a cross-sectional survey of a random sample of 1943 spouses of home-dwellers with Alzheimer’s disease (AD) to examine the prevalence of court-appointed guardians or financial powers of attorney for persons with AD, related factors and the need for information about these issues among caregiving families. The questionnaire consisted questions on variables of demographic characteristics, disability, symptoms and care needs of the person with dementia, the strain of caregiving, the use of court-appointed legal (...) guardians or powers of attorney, as well as discussions about these issues—and the need for them—with a doctor. The response rate was 77% and the mean ages of those with AD and caregivers were 80.2 and 78.2 years, respectively. The use of legal guardians was rare (4.3%), while the use of financial powers of attorney was more common (37.8%). Only 9.9% of the couples had discussed these issues with their doctor, whereas 47.9% expressed a need for it. The factors associated with the use of these legal arrangements were related to the severity of dementia, including experiencing dementia symptoms for more than 3 years, poor functioning, incontinence and behavioural symptoms. There is a clear need for information on medico-legal issues related to dementia among caregivers of AD patients. If held soon after the diagnosis, such discussions could support the autonomy of these persons in spite of AD and enable them to plan for the future as they wish. (shrink)

As people living with Alzheimer ’s disease experience their lifetime of memories slowly slipping away, they become dependent on society’s independent practical reasoners - family, health care professionals and society. Many people grow accustomed to the cognitive decline and begin to view the person with dementia as less than a person. In Dependent rational animals, Alasdair MacIntyre emphasized a moral framework that encompasses two sets of virtues needed for human beings to flourish in society and to (...) achieve genuine common goods - the virtues of independent practical reasoners and the virtues of acknowledged dependence. Virtues of acknowledged dependence are discussed ethically in terms of benevolence towards those who are disabled or dependent upon people who are strong and independent. The authors propose that using MacIntyre’s perspective of the two sets of virtues is valuable in the care of persons with Alzheimer ’s disease. According to MacIntyre, independent reasoners who understand and practice these two sets of virtues will help those people in communities who are dependent and vulnerable, and, subsequently, human flourishing can occur. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Ethics and the Elderly: The Challenge of Long-Term Care by Sarah M. Moses, and: Loving Later Life: An Ethics of Aging by Frits de LangeDolores L. ChristieEthics and the Elderly: The Challenge of Long-Term Care Sarah M. Moses maryknoll, ny: orbis, 2015. 206 pp. $38.00Loving Later Life: An Ethics of Aging Frits de Lange grand rapids, mi: eerdmans, 2015. 169 pp. $19.00Today many women and men (...) live beyond the so-called third age of life and enter their eighties, the "fourth age," during which the toll of time and the growing incidence of life-limiting conditions wear down even the best-preserved of the human species. Debilitating disease and normal ebbing of human function become more concentrated in this demographic bubble. As people enter their eighties, their world tends to narrow both physically and mentally, creating a need for increasing care. Often the elderly are rendered passive and dependent, forced to cede both autonomy and dignity. They become objects with little voice, requiring greater care and increasing cash. Likewise, as the baby boom generation enters this group, those living in the fourth age make up an increasing percentage of the population. Additionally, modern models of care for the elderly, often based on efficiency and cost-effectiveness, tend to erode their human dignity. Together these factors demonstrate a growing moral problem.What to do? These two books provide valuable road maps for how to proceed. They detail the reality and moral urgency of the situation. Both offer principles from philosophical and religious traditions that outline a good moral model: one of care, compassion, dignity, and community. They draw insights from Augustine and Thomas Aquinas, Karl Barth, and Dietrich Bonhoeffer, among [End Page 214] others. Both reference the Western biblical tradition, which honors the elderly even in the face of their limitations.Although the authors offer wise and thoughtful suggestions to address this growing moral crisis, they approach the serious moral issue very differently. Sarah Moses outlines a compelling case for a new interventional model for elderly living. While her book plays some muted chords that hint at "dissertation," the melody it conveys is strikingly forte and well worth the read.She presents two concrete examples of what good interaction with the elderly might look like. One draws from the international intentional outreach and residential community (the Community of Sant'Egidio), the other is a brick-and-mortar model (the Green House Project). Using both biblical paradigms and church teaching over the centuries, Moses makes the case for treating all persons with dignity and promoting their involvement in decision making as much as possible. The scriptural message she highlights—both our duty to the elderly and the "disappointment and depression" (105) of growing old—is particularly compelling.In her examples of good long-term care, community development is important. In the Sant'Egidio model, volunteers share a common life "through gathering for prayer and various outreach services to the poor" (39). There is motivation to support elderly in their own homes, but the project promotes small, family-like resident facilities when this is not possible. The physical place is less emphasized than the relationship among various age and economic groups.The Green House Project is based in a new vision of homes for the challenged elderly. Results of the project show that not only did staff remain in their jobs longer (nursing home employment turnover is extensive) but visitation by family members increased. Even such a simple thing as a different physical model for the actual building—replacing long halls and routinization with a more home-like environment—has positive results.Moses calls on leadership in church and community to educate, to designate funds for elder care, and to look beyond the caring and the construction of good facilities. She notes how important it is to work politically to change attitudes and actions.She sees care for all dependent people as a responsibility of both the church community and society in general. This includes fostering awareness, encouraging ongoing participation of the elderly in life—including church life—and allocating public resources. Bottom line: she calls for smaller institutions, meaningful opportunities for the... (shrink)

Previously diagnosed by symptoms alone, Alzheimer's disease is now also defined by measures of amyloid and tau, referred to as “biomarkers.” Biomarkers are detectible up to twenty years before symptoms present and open the door to predicting the risk of Alzheimer's disease. While these biomarkers provide information that can help individuals and families plan for long-term care services and supports, insurers could also use this information to discriminate against those who are more likely to need (...) such services. In this article, we evaluate whether state laws prohibit long-term care insurers from making discriminatory or unfair underwriting and coverage decisions based Alzheimer's disease biomarkers status. We report data demonstrating that current state laws do not provide meaningful protections from discrimination by long-term care insurers based on biomarker information. (shrink)

As we aggressively pursue research to cure and prevent Alzheimer’s disease, we encounter important ethical challenges. None of these challenges, if handled thoughtfully, would pose insurmountable barriers to research. But if they are ignored, they could slow the research process, alienate potential study subjects and do damage to research recruits and others. These challenges are the necessity of very large cohorts of research subjects, recruited for lengthy studies, probably ending only in the subjects’ death; the creation of cohorts of (...) ’study ready' volunteers, many of whom will be competent to consent at the beginning of the process, but move into cognitive impairment later; reliance on adaptive trial design, creating challenges for informed consent, equipoise and justice; the use of biomarkers and predictive tests that describe risk rather than certainty, and that can threaten participants’ welfare if the information is obtained by insurance companies or long-term care providers; the use of study partners that creates unique risks of harm to the relationship of subject and study partner. We need greater attention, at all levels, to these complex ethical issues. Work on these issues should be included in research plans, from the federal to the local, and should be supported through NIH in the same way that it supported work on the ethical, legal and social implications of genetic research. (shrink)

When Oxford published Emotion and Adaptation, the landmark 1991 book on the psychology of emotion by internationally acclaimed stress and coping expert Richard Lazarus, Contemporary Psychology welcomed it as "a brightly shining star in the galaxy of such volumes." Psychiatrists, psychologists and researchers hailed it as a masterpiece, a major breakthrough in our understanding of the emotional process and its central role in our adaptation as individuals and as a species. What was still needed, however, was a book for general (...) readers and health care practitioners that would dispel the myths still surrounding cultural beliefs about emotion and systematically explain the relevance of the new research to the emotional dramas of our everyday lives.Now, in Passion and Reason, Lazarus draws on his four decades of pioneering research to bring readers the first book to move beyond both clinical jargon and "feel-good" popular psychology to really explain, in plain, accessible language, how emotions are aroused, how they are managed, and how they critically shape our views of ourselves and the world around us. With his co-author writer Bernice Lazarus, Dr. Lazarus explores the latest findings on the short and long-term causes and effects of various emotions, including the often conflicting research on stress management and links between negative emotions and heart disease, cancer, and other aspects of physical and psychological health. Lazarus makes a strong case that contrary to common assumption, emotions are not irrational--our emotions and our analytical thought processes are inextricably linked.While not a "how-to" book, Passion and Reason does describe how readers can interpret what lies behind their own emotions and those of their families, friends, and co-workers, and how to manage them more effectively. Exploring fifteen emotions in depth, from love to jealousy, the authors show how the personal meaning we give to the events and conditions of our lives trigger such emotions as anger, anxiety, guilt, and pride. They provide fascinating vignettes to frame a "biography" of each emotion. Some are composite case histories drawn from Dr. Lazarus's long career, but most are stories of people the Lazaruses have known over the years--people whose emotional fears, conflicts, and desires mirror readers' own. The Lazaruses also offer a special chapter on the diverse strategies of coping people use in managing their emotions, and another, "When Coping Fails," on psychotherapy and its approaches to emotional stress and dysfunction, from traditional Freudian psychoanalysis to continuing research into relaxation techniques, meditation, hypnosis, and biofeedback.Packed with insight and compellingly readable, Passion and Reason will enrich all readers fascinated by our emotional lives. (shrink)

BackgroundEverybody has the right to decide whether to receive specific medical treatment or not and to provide their free, prior and informed consent to do so. As dementia progresses, people with Alzheimer’s dementia (PwAD) can lose their capacity to provide informed consent to complex medical treatment. When the capacity to consent is lost, the autonomy of the affected person can only be guaranteed when an interpretable and valid advance directive exists. Advance directives are not yet common in Germany, and (...) their validity is often questionable. Once the dementia diagnosis has been made, it is assumed to be too late to write an advance directive. One approach used to support the completion of advance directives is ‘Respecting Choices’®—an internationally recognised, evidence-based model of Advance Care Planning (ACP), which, until now, has not been evaluated for the target group of PwAD. This study’s aims include (a) to investigate the proportion of valid advance directives in a memory clinic population of persons with suspected AD, (b) to determine the predictors of valid advance directives, and (c) to examine whether the offer of ACP can increase the proportion of valid advance directives in PwAD.MethodWe intend to recruit at leastN = 250 participants from two memory clinics in 50 consecutive weeks. Of these, the first 25 weeks constitute the baseline phase (no offer of ACP), the following 25 weeks constitute the intervention phase (offer of ACP). The existence and validity of an advance directive will be assessed twice (before and after the memory clinic appointment). Moreover, potential predictors of valid advance directives are assessed.DiscussionThe results of this study will enhance the development of consent procedures for advance directives of PwAD based on the ACP/Respecting Choices (R) approach. Therefore, this project contributes towards increasing the autonomy and inclusion of PwAD and the widespread acceptance of valid advance directives in PwAD.Trial RegistrationDRKS, DRKS00026691, registered 15th of October 2021,https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00026691. (shrink)

Advance patient directives are various forms of anticipatory medical directives made by competent individuals for the eventuality of future incompetence. They are therefore appropriate instruments for competent patients in the early stage of Alzheimer's disease to document their self-determined will in the advanced stages of dementia. Theoretical objections have been expressed against the concept of advance patient directives (problems of authenticity and identity) which, however, cannot negate the fundamental moral authority of advance patient directives. Therefore, patients, family (...) members, and physicians should make use of the appropriate form of advance directive as part of common treatment and care planning. Advance directives, when utilized intelligently, represent appropriate instruments for shared decision-making by patient, family members and physician. They should be utilized to a greater extent, particularly for the treatment planning of demented patients. (shrink)

The presented article illustrates David DeGrazia’s bioethical standpoint regarding the theoretical and the practical problem of memory in the context of the personal identity of a patient suffering from Alzheimer's disease. The first part of the article is a presentation of the theoretical problem of memory in the context of numerical and narrative identity being the center of the metaphysical theory of the human person. The second part of the article presents a practical memory problem in the bioethical (...) case of a patient diagnosed with early stages of Alzheimer’s disease. The American bioethicist and philosopher David DeGrazia proposes that the theoretical solutions regarding the identity of the human person find their practical application in bioethics in resolving moral dilemmas in the health care. The final part of the article focuses on criticizing the possibilities of practical applications of theoretical solutions on the subject of the human person in the bioethical position of David DeGrazia. (shrink)

Respecting the autonomy of disabled people is an important ethical issue for providers of long-term care. In this influential book, George Agich abandons comfortable abstractions to reveal the concrete threats to personal autonomy in this setting, where ethical conflict, dilemma and tragedy are inescapable. He argues that liberal accounts of autonomy and individual rights are insufficient, and offers an account of autonomy that matches the realities of long-term care. The book therefore offers a framework for carers to develop (...) an ethic of long-term care within the complex environment in which many dependent and aged people find themselves. Previously published as Autonomy and Long-term Care, this revised edition, in paperback for the first time, takes account of recent work and develops the author's views of what autonomy means in the real world. It will have wide appeal among bioethicists and health care professionals. (shrink)

Inflammatory bowel disease is chronic and incurable. Imperious diarrhea, rectal bleeding, fatigue, and weight loss, the main manifestations, cause a decrease in the quality of the patient’s personal and professional life. The objectives of this study were to identify a possible relationship between early maladaptive schemas and disease activity status using logistic regression, to identify the prevalence of early maladaptive schemes in patients and to propose a psychotherapeutic intervention plan. The following were found in a sample of 46 (...) patients aged 16–76 years. An increase in the domain overvigilance and inhibition score had a significant effect, with an increase of 1.137 CI95% [1.031, 1.254] of the risk of the disease being diagnosed as active. High and very high scores were observed for the emotional deprivation scheme and dependence/incompetence, vulnerability to harm and illness and subjugation schemas. The results show that the proposed model could predict and reconfirm the diagnosis; patients have specific psychotherapeutic needs. The therapeutic goal would be to offer care, empathy and protection, to strengthen self-confidence, to make patients realize that they have the ability to cope, to provide permission, encourage the patient to experiment, and guide the patient to express their anger healthily. The therapy scheme’s intervention could lead to increased long-term disease management capacity and, consequently, reduce costs directly and indirectly caused by this condition. (shrink)

In this article, caring, remembering and sharing memory are presented as moral responses, the case study being Alzheimer’s disease (AD). Memory connects memories and images, while care connects individuals, which is an ethical issue. When a person’s memory is lost, the care of others becomes the only thread connecting them to the world. AD deprives a person of memories, body control, makes it impossible to remember, communicate, move, recognize the environment, and disrupts consciousness. Caring for a patient (...) with a neurodegenerative brain disease requires constant reminding and reiteration; the presence of a caring person reminds of what the patient themselves can no longer remember. Lost memories do not mean that life or relational values have also lost their meaning. The description of the memory movement emphasizes the importance of repetition in the moral act. Highlighting the matter of care, also in scientific work, is the aim of this text. To care is to remember, on behalf of the AD patient, about the patient’s life. Within bioethical research, moral responses are an important point for projects which seek to improve the condition of patients—not only the condition of health but also the comfort of life. This improvement will not be possible without attentive, committed caregivers and their responsible attitude in the face of the phenomenon of memory loss. (shrink)

The task of aligning the philosophical and clinical perspectives on ethics is a challenging one. Clinical practice informs philosophy, not merely by supplying cases, but through shaping and testing philosophical concepts in the reality of the clinical world. In this paper we explore several aspects of the relationship between the philosophical and the clinical within a framework of palliative care for people living with Alzheimer's disease. We suggest that health professionals have a moral obligation to question (...) previous assumptions concerning the quality of life among people with Alzheimer's, and to address the question: does the concept of palliative care properly embrace people with severe dementia? We propose an ethic of palliative care for people with Alzheimer's that is based, not on the traditionally understood principle of autonomy, but on the need to listen to those living with the disease, acknowledging their profound loss of cognitive abilities, with a focus on preventing and relieving suffering, and improving the individual's quality of life. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Response to Elvira Panaiotidi, “The Nature of Paradigms and Paradigm Shifts in Music Education”Wenyi W. KurkulAt the beginning, I would like to congratulate Elvira Panaiotidi on her interesting paper and on her proposal to move beyond the long-running debates that began in the mid-1990s between Bennett Reimer and David Elliott and their respective supporters. I also applaud her affirmation that, beyond the numerous debates within the music-education philosophy community, (...) the ultimate goal is to put the theories to work in schools or, in other words, to convert theories into operative paradigms.Echoing her affirmation, I shared her article with a class of my graduate students after I received the invitation to respond to this paper. All of my graduate students are current schoolteachers in the greater Washington, DC metropolitan area in the United States. Some of them are young teachers; others have decades [End Page 114] of teaching experience. As a university professor, I have always been thrilled by how much my thoughts are inspired by my students—by their stories, writing, discussions, dialogues, and sometimes very challenging questions in class. Their concern for their daily jobs and their students constantly remind me of our responsibilities to the children in the schools. However, with our schools and students in mind, I have to ask the music education philosophy community a question: Is "producing a unified concept of music," or "searching for a unified approach," or even aiming to "develop a unified approach in music education" as proposed by Panaiotidi what we truly need?In her paper, Panaiotidi discusses the debate over the approaches in music education by Reimer and Elliott in the context of paradigm shifts. The term, "paradigm shift," was introduced by Thomas Kuhn in 1962 in his highly influential book, The Structure of Scientific Revolutions. Kuhn proposes that almost every significant break-through in the field of scientific endeavor is first a break with tradition, with old ways of thinking, with old paradigms. For example, until the germ theory was developed, there was a high percentage of deaths during childbirth and scientists were not sure why. Likewise, in military settings, more people were dying from small wounds and diseases than from the major traumas experienced on the frontlines. But as soon as the germ theory was developed, a whole new paradigm—a better, improved way of understanding what was happening—made dramatic and significant improvements in the practice of medicine possible.The United States today is the setting for another fruitful and powerful example of a dramatic paradigm shift. The traditional concept of government had been monarchical, based on the divine right of kings. It was not until centuries later that a significant break-through paradigm was developed: government of the people, by the people, and for the people. A constitutional democracy was born that unleashed tremendous human energy and ingenuity. This new paradigm, over time, generated personal empowerment, free enterprise, a higher standard of living, freedom and liberty, and influence and hope unequaled in the history of the world.Stephen R. Covey, the author of a popular book in the late 1980s, The Seven Habits of Highly Effective People, cites Kuhn's conception of paradigm shift to illustrate his own ideas. He describes an experiment at the Harvard Business School in which an instructor passed out a picture of a young woman to half of the class and a picture of an old woman to the other half. The students were asked to look briefly at the picture and pass it back. The professor then asked the class to describe the woman as he projected on a screen a picture of a woman that was a combined image of the "old" and "young" women. Needless to say, the students debated the age of the woman. If they had seen the "young" version, [End Page 115] they could see only a young woman now, and vice-versa. Each student was adamant about his or her position. They did not see the image in another way until the lines were pointed out to demonstrate the features of the old and young woman. Covey cites this exercise to prove the powerful conditioning effects of one... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Buddhist-Christian Studies 20 (2000) 167-189 [Access article in PDF] An Interfaith Dialogue between the Chinese Buddhist Leader Taixu and Christians Darui LongHarvard University 1 Introduction On June 21, 1938, a Buddhist monk, the Venerable Taixu (1889-1947), delivered a speech at West China Union University. The interesting title of this speech, which was delivered at the request of University President Dr. Zhang Linggao 2 and Vice President Dryden Phelps, was (...) "China needs Christianity and Europe and America need Buddhism." 3 It might seem surprising that the Venerable Taixu, a Chinese Buddhist leader, would give a speech calling for the propagation of Christianity in China. More plausible, perhaps, would have been for him to insist on the spread of his own religion. This paper will explore the background behind this apparent contradiction.Taixu was one of the most important Buddhist figures in the history of modern China. As a pained and sympathetic witness to the untold sufferings of the Chinese people, he advocated reform of Buddhism as a response to imperialist invasions and the widespread corruption that existed not only among contemporary government officials, but also among Chinese Buddhists themselves. As part of his plan, he outlined the reorganization of the Sangha 4 system in China, seeking to bring Buddhism up to date by making it scientific and socially conscious, thereby eliciting respect from intellectuals and youth alike. This worthy goal could, in his view, only be achieved if the monastic system was cleansed of commercialism and superstition. His forty-year crusade failed, however, as much because of strong resistance from Chinese Buddhists themselves as from the incessant warfare and resulting social disorder. Exhausted from his many labors, he died in 1947, by which time he had barely succeeded in winning control of the Chinese Buddhist Association.After his death, Buddhist scholars and practitioners alike began to heap praises on him for his life-long, but unsuccessful, efforts to reform and reorganize the Chinese Buddhist Sangha system. His disciples published Taixu dashi quanshu (the Complete Works of the Venerable Taixu) in 1950. These authors, owing to their close association with Taixu, recorded his activities quite uncritically. One of Taixu's followers even referred to him as the Martin Luther of modern Chinese Buddhism. 5 [End Page 167]In recent years, scholars in the People's Republic of China have published books on the development of modern Chinese Buddhism and its relationship to society. Most of them describe positively Taixu's contributions and thoughts in this area. At least six books about modern Chinese Buddhism have come out since 1989. 6 For some reason, these scholars have shown little disagreement in the way they have recorded his life and activities, his thoughts, and his role in the development of modern Chinese Buddhism. There are other aspects to the story, however, generally neglected, that deal with negative comments, criticism, and unfavorable views of his personal shortcomings.In light of the generally favorable treatment he has received, it is difficult to find records that support alternative interpretations of the Venerable Taixu's legacy. Chinese scholars have ignored the negative responses from participants at the gathering where Taixu delivered his speech. The late Professor Holmes Welch, though, has made both positive and negative comments in his book The Revival of Chinese Buddhism which was published in 1968. 7More than sixty years have elapsed since Taixu's speech. It seems unlikely that--at the time of its delivery--Taixu realized that he was calling for a kind of interfaith dialogue between Chinese Buddhism and Christianity. The term "interfaith dialogue" refers to a discussion that occurs between persons or groups belonging to different religions. In the theological climate of the 1960s and 1970s, this type of dialogue was quite frequent. Taixu, it now appears, seemed to realize the importance of adopting some elements from Christianity into Chinese Buddhism. For example, he fully intended to introduce Christian pastoral training into his program of Chinese Buddhist reform. 8 Today, we still have many questions. To what extent did Taixu succeed in his reforms? What were his most significant... (shrink)

The purpose of this study was to explore how one person experienced the early years of dementia as she was living through the pre-clinical and earlyclinical stages of Alzheimer’s disease. Interviews were held onfour occasions over a period of three years. The data were analyzed usingthe descriptive phenomenological psychological method, in which theresearcher approached the data from a caring perspective. The livedexperience of early-stage Alzheimer’s disease showed to be acomplex transitional phenomenon that involves a dynamic process of personaladjustment. (...) The process is set in motion as the participant receives thediagnosis and will eventually lead her towards a state of increased opennessand receptiveness toward the disease. The results describe this process asit unfolds in the context of the overall experience, and the variousadjustments that the participant undertakes. Some reflections concerning theplausible needs of patients with early-stage Alzheimer’s diseaseare included in the discussion. (shrink)

The rate of individuals diagnosed with Alzheimer’s disease is expected to increase significantly in the coming decades. As more attention is paid to end-of-life care for these patients, questions about the use of assisted nutrition and hydration will become more prevalent. Two recent articles that discuss the use of ANH in patients suffering from advanced Alzheimer’s disease are discussed. The author argues that Pope John Paul II’s designation of medically assisted nutrition and hydration as “ordinary (...) class='Hi'>care” does not alleviate the ethical necessity of discerning the benefits and burdens of the procedure for these patients. He argues that tube feeding of patients with advanced Alzheimer’s disease should be considered extraordinary, non-obligatory treatment, but future research is still needed to assess the objective and subjective criteria for making this judgment. National Catholic Bioethics Quarterly 13.3 (Autumn 2013): 469–482. (shrink)

Person‐specific evidence was developed as a grounded theory by analyzing 20 selected case descriptions from interventions using the guided self‐determination method with people with various long‐term health conditions. It explains the mechanisms of mobilizing relational capacity by including person‐specific evidence in shared decision‐making. Person‐specific self‐insight was the first step, achieved as individuals completed reflection sheets enabling them to clarify their personal values and identify actions or omissions related to self‐management challenges. This step paved the way for sharing (...) these insights and challenges in a relationship with a supportive health professional, who could then rely on person‐specific evidence instead of assumptions or a narrow disease perspective for shared decision‐making. Trust in the evidence encouraged the supportive health professional to transfer it to the interdisciplinary team. Person‐specific evidence then enhanced the ability of team members to apply general evidence in a meaningful way. The increased openness achieved by individuals through these steps enabled them to eventually share their new self‐insights in daily life with other people, decreasing loneliness they experienced in self‐management. Relational capacity, the core of the theory, is mobilized in both people with long‐term health conditions and healthcare professionals. Further research on person‐specific evidence and relational capacity in healthcare is recommended. (shrink)

Houston, Texas, is a major U.S. city with, like many, a growing aging population. The purpose of this study and ultimate book chapter is to explore the views and perceptions of long-term care (LTC) residents, family members and health care providers. Individuals primarily in independent living and group residential settings were interviewed and studied. Questions emphasized the concepts of personal autonomy, dignity, quality and location of care and decision making. Although a small sample of participants were (...) involved, consistency was noted. Keeping the elderly in caring and loving home situations (theirs or family) was most preferred. Personal choice and independence were emphasized by residents, but family members needed to act as advocates. We also noted that the legal system emphasizes family control over individual decision making as competency declines with aging. Optimal personal decision making in the residents' best interest also became more difficult with loss of individual mental capacity. (shrink)

It is evident, in the face of the COVID-19 pandemic that has physicians confronting death and dying at unprecedented levels along with growing data suggesting that physicians who care for dying patients face complex emotional, psychological and behavioural effects, that there is a need for their better understanding and the implementation of supportive measures. Taking into account data positing that effects of caring for dying patients may impact a physician’s concept of personhood, or “what makes you, ‘you’”, we (...) adopt Radha Krishna’s Ring Theory of Personhood (RToP) to scrutinise the experiences of physicians working in intensive care units (ICU) using a fictional scenario that was inspired by real events. The impact of death and dying, its catalysts, internal constituents, external factors, dyssynchrony, and buffers, specific to ICU physicians, were identified and explored. Such a framework allows for ramifications to be considered holistically and facilitates the curation of strategies for conflict resolution. This evaluation of the RToP acknowledges the experience and wide-ranging effects it has on ICU physicians. As such, our findings provide insight into their specific needs and highlight the importance of support on a personal and organisational level. Although further research needs to be conducted, the RToP could serve as the basis for a longitudinal assessment tool supported by the use of portfolios or mentorship due to their provision of personalised, appropriate, specific, timely, accessible and long-term support. (shrink)

In the hope of future treatments to prevent or slow down the disease, there is a strong movement towards an ever-earlier detection of Alzheimer's disease. In conjunction with scientific developments, this has prompted a reconceptualization of AD, as a slowly progressive pathological process with a long asymptomatic phase. New concepts such as "preclinical" and "prodromal" AD have been introduced, raising a number of conceptual and ethical questions. We evaluate whether these new concepts are theoretically defensible, (...) in light of theories of health and disease, and whether they should be understood as disease or as an at-risk state. We introduce a pragmatic view on disease concepts and argue that an evaluation of the reconceptualization of AD should also take its aims and effects into account, and assess their ethical acceptability. The reconceptualization of AD is useful to coordinate research into preventive strategies, and may potentially benefit future patients. However, in the short term, early detection and labelling of "preclinical AD" can potentially harm people. Since there is no treatment available and the predictive value is unclear, it may only create a group of "patients in waiting" who may suffer from anxiety, uncertainty and stigmatization, but will never actually develop dementia. We conclude that only if the promise of preventive medication materializes, will the reconceptualization of AD turn out unequivocally to be for the better. Otherwise, the reconceptualization may do more harm than good. (shrink)

Pathogenesis in tauopathies involves the accumulation of tau in the brain and progressive synapse loss accompanied by cognitive decline. Pathological tau is found at synapses, and it promotes synaptic dysfunction and memory deficits. The specific role of toxic tau in disrupting the molecular networks that regulate synaptic strength has been elusive. A novel mechanistic link between tau toxicity and synaptic plasticity involves the acetylation of two lysines on tau, K274, and K281, which are associated with dementia in Alzheimer's (...) disease (AD). We propose that an increase in tau acetylated on these lysines blocks the expression of long‐term potentiation at hippocampal synapses leading to impaired memory in AD. Acetylated tau could inhibit the activity‐dependent recruitment of postsynaptic AMPA‐type glutamate receptors required for plasticity by interfering with the postsynaptic localization of KIBRA, a memory‐associated protein. Strategies that reduce the acetylation of tau may lead to effective treatments for cognitive decline in AD. (shrink)

As in the United States, the Dutch conversation about assisted suicide emerged primarily in the context of cancer. At least in that context, before acceding to a request for assistance in dying, caregivers must be sure that the person has made a voluntary and carefully considered request, and that her suffering is unbearable and without prospect of improvement. The Dutch have recently been trying to use those criteria in the context of Alzheimer's disease. Given the wave of (...) class='Hi'>Alzheimer's cases poised to crash onto wealthy countries, along with emerging technology to detect the disease process before symptoms appear, we should be grateful to the Dutch for that attempt. As a newcomer to this discussion, however, I was struck that those criteria may have a somewhat odd result. A patient with Alzheimer's disease can easily meet the conditions in the early stage of the disease, when one usually has the mental capacity to request assistance in dying and to make the case that one's existential suffering is unbearable. If one is in the late stage, though, it can be much harder to get such assistance because one does not have that capacity. (shrink)

Background:Nurse managers are expected to continuously ensure that ethical standards are met and to support healthcare workers’ ethical competence. Several studies have concluded that nurses across various healthcare settings lack the support needed to provide safe, compassionate and competent ethical care.Objective:The aim of this study was to explore and understand how nurse managers perceive their role in supporting their staff in conducting ethically sound care in nursing homes and home nursing care.Design and participants:Qualitative individual interviews were performed (...) with 10 nurse managers with human resources responsibilities for healthcare workers in four nursing home wards and six home nursing care districts. Content analysis was used to analyse the data.Ethical considerations:The Norwegian Centre for Research Data granted permission for this study.Findings:The analysis resulted in seven subcategories that were grouped into three main categories: managers’ perception of the importance of the role, managers’ experiences of exercising the role and managers’ opportunities to fulfil the role. Challenges with conceptualizing ethics were highlighted, as well as lack of applicable tools or time and varying motivation among employees.Discussion:The leaders tended to perceive ethics as a ‘personal matter’ and that the need for and benefit of ethical support (e.g., ethics reflection) depended on individuals’ vulnerability, attitudes, commitment and previous experiences. The managers did not seem to distinguish between their own responsibility to support ethical competence and the responsibility of the individual employee to provide ethical care.Conclusions:Our findings suggest that nurse managers need support themselves, both to understand and to carry out their responsibilities to foster their staffs’ ethical conduct. Supporting staff in conducting ethically sound care requires more than organizing meeting places for ethical reflection; it also requires greater awareness and understanding of what ethical leadership means. (shrink)

Perhaps the change of title says it all. This is the revised edition of Agich’s Autonomy and Long Term Care, which was itself a seminal work. The new title gives us the main drift: if autonomy is important in old age, so too is dependence. Indeed, in the actual world in which Agich is keen to locate his study, autonomy and dependence intermingle as inescapable features of old age for real people. As he says: “Maintaining a sense of autonomous (...) wellbeing is consistent with dependencies on medication or professional care if those dependencies help to maintain a more basic sense of functional integrity in those areas of life that individuals value” .The present book retains and renews its standing as a first rate work in the field of philosophical medical ethics. It aims “to sketch a framework for respecting autonomy in long term care”, rather than to work out practical guidelines . Nevertheless, its strength lies in Agich’s ability to move from the real world of often dependent older people to the philosophical underpinnings of our thinking about how we care for them. In so doing, Agich mounts a powerful attack on what he sees as a prevailing tendency in bioethics. It is the tendency to define autonomy “primarily in terms of a concept of human persons as rational, independent agents and decision makers, who are assumed to be competent and who can be understood without serious reference to society or history” . As he says: “Influenced by liberal theory, autonomy is often treated in bioethics as a concept that primarily applies to the public realm …. (shrink)

Background: Today, many healthcare or dementia organizations, clinicians, and companies emphasize the importance of detection of Alzheimer’s disease in an early phase. This idea has gained considerable momentum due to the development of biomarkers, the recent FDA and EMA approval of three amyloid tracers, and the failure of a number of recent therapeutic trials conducted in the early dementia phase. On the one hand, an early etiological diagnosis can lead to early and more efficacious intervention. On the other hand, (...) it is questioned how early an etiological diagnosis is beneficial to the patient. Here we consider ethical issues related to the process of biomarker testing and the impact on the diagnostic disclosure to patients with mild cognitive impairment due to prodromal Alzheimer’s disease. Methods: A systematic review of the theoretical bioethics literature was performed by using electronic databases. The review was limited to articles published in English between 2003 and 2016. Results: A total of twenty articles were included in our effort to make an analysis of the ethical challenges. One of the biggest challenges was the uncertainty and the predictive value of the biomarker-based diagnosis where patients can be amyloid positive without full certainty whether or when they will develop symptomatic decline due to Alzheimer’s disease. Another challenge was the tension between the right to know versus the wish not to know, the limited efficacy of currently available treatment options, and the opportunities and consequences after receiving such an early diagnosis. Conclusion: Based on the results and the additional comments in the discussion, several unanswered questions emerged. Therefore, careful consideration of all these ethical issues is required before the disclosure of a biomarker-based diagnosis to the patient with mild cognitive impairment due to Alzheimer’s disease. (shrink)

The prevalence of dementia is increasing worldwide but there is still no hope of a cure. Huge resources go into biomedical research, whose reductive ‘enactment’ has severe consequences for women, who are predominantly affected by dementia. To challenge such tragic enactment, this article considers ‘multiple ontologies’ of the most common type of dementia – Alzheimer’s disease – in the popular fictional film adaptations Still Alice and A Song for Martin. Using a post-humanist account of feminist visual studies of technoscience, (...) this comparative film analysis reveals how gender supersedes AD oversteering the hierarchical dualisms between health and pathology, human and nonhuman, and biomedical and artistic modes of knowing about Alzheimer’s. The author argues that these films stress the potential of the arts, as a multisensorial post-humanist embodied state of becoming with AD, to challenge hierarchical dualisms and innovatively contribute to dementia care. (shrink)

The carer of the person with dementia is enjoined to maintain respect, and to reinforce this a bill of rights has been established . Of course, talk of rights does not guarantee respectful behaviour. In this paper it is argued that the discovery that the sufferer continues to be a person, with a unique lifeworld, can assist the carer to conform willingly to the demand that they act respectfully.The current research project makes central the idiographic description of the (...) individual case. (shrink)

In this paper we analyse some ethical and philosophical questions related to the development of memory enhancing drugs (MEDs) and anti-dementia drugs. The world of memory enhancement is coloured by utopian thinking and by the desire for quicker, sharper, and more reliable memories. Dementia is characterized by decline, fragility, vulnerability, a loss of the most important cognitive functions and even a loss of self. While MEDs are being developed for self-improvement, in Alzheimer’s Disease (AD) the self is being lost. (...) Despite this it is precisely those patients with AD and other forms of dementia that provide the subjects for scientific research on memory improvement. Biomedical research in the field of MEDs and anti-dementia drugs appears to provide a strong impetus for rethinking what we mean by ‘memory’, ‘enhancement’, ‘therapy’, and ‘self’. We conclude (1) that the enhancement of memory is still in its infancy, (2) that current MEDs and anti-dementia drugs are at best partially and minimally effective under specific conditions, (3) that ‘memory᾿and ‘enhancement᾿are ambiguous terms, (4) that there is no clear-cut distinction between enhancement and therapy, and (5) that the research into MEDs and anti-dementia drugs encourages a reductionistic view of the human mind and of the self. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The 2004 Meeting of the Society for Buddhist-Christian StudiesFrances S. AdeneyThe 2004 meeting of the Society for Buddhist-Christian Studies was held in San Antonio, Texas, 19–20 November 2004. This year's theme was "Dealing with Illness and Promoting Healing: Buddhist and Christian Resources." During the first session panelists Laura Habgood Arsta, Jay McDaniel, and Beth Blizman presented Christian views on dealing with illness, and Rita Gross responded from (...) a Buddhist perspective. The second session focused Buddhist resources for promoting healing by panelists Francis Tsio and Grace Buford, with Laurel Curran presenting a Christian response.Laura Habgood Arsta presented research done by undergraduate students in border communities between the United States and Mexico. The topic was the connection between the Pentecostal movement and environmental health. Pentecostal Christianity (250–400 million members worldwide) emphasizes the signs that accompany the presence of Christ, evidenced by experiences of spirit baptism and faith healing.Their sample indicated that poor and minority people don't identify with the environmental movement until personal health problems emerge. One possible reason for Pentecostal religion thriving, according to this research, might be that exposure to toxins and poverty draws people to healing, a theological pillar of Pentecostalism. Religious services provide an emotional outlet and inspire self-confidence, which can become a mental health component of a healing solution. Women are free to share and lead services, finding leadership opportunities and a social group in churches. As an inexpensive alternative to medical care, healing in the Pentecostal church provides a sense of physical healing as well as help in overcoming addictions.Beth Blizman informed the group of the toxicity of the Lake Erie area of northern Ohio. Cancer is becoming normalized in this region, which has the highest level of multiple cancers in the United States. Beth feels called to heal her own body and become part of the healing process of that region. She argued that an attitude that disrespects the earth leads to disrespect of one another. "How can healing be found?" she asked. She discussed many resources from ancient monastics to modern women religious, from process and feminist thought to new cosmologies. Finally she connected [End Page 149] Audre Lourde's work on the rejection of difference to the bioregional studies that she has been doing on toxicity and illness.Jay McDaniels followed by giving a Christian perspective on Alzheimer's disease as an ecumenical Christian influenced by Buddhism. He addressed three questions that Christians ask in this situation. The first question is "Where is God now? Is God inside my loved one? How?" In response to this question, Jay outlined an evangelical view of God that understands God as a transcendent being, "way up there, watching from a distance." He contrasted this view with a process view of God as an "umbrella of compassion that envelops the world without smothering it." In this view, God is the great companion, sharing the confusion and anxiety of the ill person.So where is the person as they experience personality changes caused by the disease? Jay addressed this second question through process theology, stating that in process theology the person is defined in Buddhist terms, inheriting from the past and contributing to the future. A person is constantly in flux or transformation, so the person with illness may be a different person than they once were but can be embraced as the person that they are now. The multidimensional universe of process theology allows for a person to live "with one foot on earth and one foot in heaven."Help for dealing with Alzheimer's disease, Jay's third question, can be found in the Benedictine vow of obedience, stability, and ongoing conversion. The deepest need for those with Alzheimer's is to be with them, being available to others to listen. Stability is the vow to stay with the relationship through these changes. Ongoing conversion can come through Alzheimer's as those with this disease invite us into a space of creative imagination and a new kind of respect.Rita Gross responded to the three presentations by arguing that how one perceives a situation changes it tremendously. Two Buddhist principles that apply here are... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The 2006 Meeting of the Society for Buddhist-Christian StudiesWashington, DC, November 17–18, 2006Frances S. Adeney, SecretaryThe theme of this year's meeting was "Religious Self-Fashioning and the Role of Community in Contemporary Buddhist and Christian Practice." The first session presented participants with three papers. The first compared Christian and Buddhist groups that fostered community and long-term commitment. A second paper developed the theme of community affiliation with a (...) description of the Buddhist practice of Hoza. And a third paper demonstrated how a dual practitioner could minister pastorally to both Buddhists and Christians. In the second session practical and philosophical foci met in the discussion of papers on individualized vs. Sangha Buddhism in the United States and co-origination and universal intersubjectivity in Buddhist and Christian philosophies. It was a rich feast indeed.Dr. Sandra Costen Kunz presented her paper "Christian and Buddhist Confession, Affiliation, and Countercultural Action" to start off the first session. In a study of Christian and Buddhist groups, she found interesting methodological parallels in the process that groups undertook to build commitment and community among followers of each tradition. Focused on specific congregations, her paper served to illustrate a trend toward community building that has broad implications for both Buddhist and Christian institutions in their work of fostering commitment and nurturing faith in participants.Dr. Gene Reeves continued along the same theme with a description of the Buddhist practice of Hoza in his particular Buddhist community in Japan. A weekly practice of meeting together to help one another demonstrates a deeper philosophical belief that all can become bodhisattvas for others. Within the hierarchical Buddhist institutional structure, the meetings around Hoza display an egalitarianism that empowers ordinary people to see the Buddha nature in others and to realize it in themselves. In addition to empowering individuals, that process of mutual aid also solidifies the group.According to both papers, individual practice of religion, be it Buddhist or [End Page 133] Christian, and a group process of social solidification work together to deepen faith and community.The third paper in this first session showed the results of that individual/ social dialectic in the life of Dr. Duane Bidwell, who presented his paper "Practicing the Religious Self: Buddhist-Christian Identity as Social Artifact." The main emphasis of this paper was that religion, as a socially constructed reality, depends on community even in its most individualistic forms. As Buddhism and Christianity develop their traditions, those socially constructed worlds can be penetrated by one who traverses between the two worlds. Two stories of pastoral care demonstrated his point. First, in a Buddhist setting, Bidwell, although perceived as a Christian, drew on his Buddhist practices to comfort the dying. In the second example, the situation was reversed. In a setting in which Christianity was the expected form, Bidwell drew on those resources to worship around the deathbed of a young man.In her response to those three papers, Dr. Sallie King brought a critical dimension into the discourse as she asked questions concerning authority and decision making in each context. "How is consensus decision making balanced with hierarchical power in the groups studied?" she asked Dr. Kunz. "Given the equalizing power of Hoza, why is Reeves's organization so hierarchical?" was her question to Dr. Reeves. "And how," she asked, "did choice enter into Bidwell's religious identity?" Responses to those queries led to an interesting discussion that provided food for thought for participants in this meeting.The second session opened with Dr. Kenneth Tanaka's study "The Individual in Relation to the Sangha in American Buddhism: An Examination of 'Individualized Religion.' " Dr. Tanaka spoke to both communal and individualized dimensions of American Buddhism by analyzing a sangha in Alameda County, California, and contrasted it with the Buddhist practices of converts who did not participate in a sangha. He showed that identity for sangha members in Alameda was primarily related to selective joining of group activities by members. In the case of converts, his research showed that their Buddhist identity was most strongly related to meditative practices. A high level of commitment to those practices, with a goal of spiritual development, marked the converts who were... (shrink)

The stressful nature of caring for an older adult with a chronic disease, such as Alzheimer’s disease, can create barriers between the caregiver-care recipient, as they try to navigate their continuously changing social relationship. Interpersonal synchrony, is an innovative approach that could help to sustain caregiving relationship dynamics by promoting feelings of connection and empathy through shared behavior and experiences. This review investigates the current literature on interpersonal synchrony from an interdisciplinary perspective by examining interpersonal synchrony (...) through psychological, neural, and hormonal measures across the adult lifespan. We then present a case for examining the degree to which interpersonal synchrony can be used to facilitate affiliation and well-being in the caregiver-care recipient relationship. We find that there is significant evidence in healthy adult populations that interpersonal synchrony can support affiliative feelings, prosocial behavior, and well-being. Characterizing the psychological, neural, and hormonal mechanisms of interpersonal synchrony is a first step towards laying the groundwork for the development of tools to support relational closeness and empathy in the caregiving context. Finally, we explore the strengths and limitations of using interpersonal synchrony to support relational well-being, and discuss possible avenues for future research. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Response to Elvira Panaiotidi, “The Nature of Paradigms and Paradigm Shifts in Music Education”Wenyi W. KurkulAt the beginning, I would like to congratulate Elvira Panaiotidi on her interesting paper and on her proposal to move beyond the long-running debates that began in the mid-1990s between Bennett Reimer and David Elliott and their respective supporters. I also applaud her affirmation that, beyond the numerous debates within the music-education philosophy community, (...) the ultimate goal is to put the theories to work in schools or, in other words, to convert theories into operative paradigms.Echoing her affirmation, I shared her article with a class of my graduate students after I received the invitation to respond to this paper. All of my graduate students are current schoolteachers in the greater Washington, DC metropolitan area in the United States. Some of them are young teachers; others have decades [End Page 114] of teaching experience. As a university professor, I have always been thrilled by how much my thoughts are inspired by my students—by their stories, writing, discussions, dialogues, and sometimes very challenging questions in class. Their concern for their daily jobs and their students constantly remind me of our responsibilities to the children in the schools. However, with our schools and students in mind, I have to ask the music education philosophy community a question: Is "producing a unified concept of music," or "searching for a unified approach," or even aiming to "develop a unified approach in music education" as proposed by Panaiotidi what we truly need?In her paper, Panaiotidi discusses the debate over the approaches in music education by Reimer and Elliott in the context of paradigm shifts. The term, "paradigm shift," was introduced by Thomas Kuhn in 1962 in his highly influential book, The Structure of Scientific Revolutions. Kuhn proposes that almost every significant break-through in the field of scientific endeavor is first a break with tradition, with old ways of thinking, with old paradigms. For example, until the germ theory was developed, there was a high percentage of deaths during childbirth and scientists were not sure why. Likewise, in military settings, more people were dying from small wounds and diseases than from the major traumas experienced on the frontlines. But as soon as the germ theory was developed, a whole new paradigm—a better, improved way of understanding what was happening—made dramatic and significant improvements in the practice of medicine possible.The United States today is the setting for another fruitful and powerful example of a dramatic paradigm shift. The traditional concept of government had been monarchical, based on the divine right of kings. It was not until centuries later that a significant break-through paradigm was developed: government of the people, by the people, and for the people. A constitutional democracy was born that unleashed tremendous human energy and ingenuity. This new paradigm, over time, generated personal empowerment, free enterprise, a higher standard of living, freedom and liberty, and influence and hope unequaled in the history of the world.Stephen R. Covey, the author of a popular book in the late 1980s, The Seven Habits of Highly Effective People, cites Kuhn's conception of paradigm shift to illustrate his own ideas. He describes an experiment at the Harvard Business School in which an instructor passed out a picture of a young woman to half of the class and a picture of an old woman to the other half. The students were asked to look briefly at the picture and pass it back. The professor then asked the class to describe the woman as he projected on a screen a picture of a woman that was a combined image of the "old" and "young" women. Needless to say, the students debated the age of the woman. If they had seen the "young" version, [End Page 115] they could see only a young woman now, and vice-versa. Each student was adamant about his or her position. They did not see the image in another way until the lines were pointed out to demonstrate the features of the old and young woman. Covey cites this exercise to prove the powerful conditioning effects of one... (shrink)

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

The ageing populations of the Western world present a wide range of economic, social, and cultural implications, and given the challenges posed by deteriorating maintenance ratios, the scenario is somewhat worrying. In this paper, I investigate whether Martha C. Nussbaum's capabilities approach could secure dignity for older people in long‐term care, despite the per capita decreases in resources. My key research question asks, ‘What implications does Nussbaum's list of central human capabilities have for practical social care?’ My (...) methodology combines Nussbaum's list with ethnographic data gathered from a Finnish sheltered home for older people. On the basis of this study, it seems that the capabilities approach is a plausible framework for the ethics of care because it highlights differences in the ability to function and thus differences in opportunities to pursue a good life. The ideas presented in this article could assist social policy planners and executives in creating policies and practices that help old people to maintain their dignity until the end of their days. (shrink)

The COVID-19 pandemic has been devastating for people living with dementia (PLWD) and their caregivers. While prior research has documented these effects, it has not delved into their specific causes or how they are modified by contextual variation in caregiving circumstances.

Providing nursing care for people with dementia residing in long-term care facilities poses specific challenges regarding pain practices. With underlying communication barriers unique to dementia pathologies, this population is often unable to communicate verbal sentiments and descriptions of pain. In turn, nurses caring for older persons with dementia have difficulty assessing, managing and treating pain. Objectivity is an imperative factor in healthcare pain practices; however, it is difficult to objectively evaluate someone who cannot accurately (...) communicate their experience of pain. Therefore, the authors believe that subjectivity is also an essential part of evaluating the person with dementia's experience of pain. In this critical reflection, the authors explore objectivity and subjectivity in relation to pain practices for dementia in long-term care. A historical summary of pain is provided outlining the evolution of objectivity and subjectivity related to pain practices. The authors discuss the complexities of assessing and managing pain and offer a new perspective about the role of objectivity (and co-existence of subjectivity) for nurses treating pain in the older adults with dementia. (shrink)

Background Migrant live-in care workers are a main pillar of long-term care in many countries, including Germany. Several studies examining their working and living conditions reveal serious problems. However, a key element of live-in arrangements, namely the relationship between the individuals involved, has not yet been systematically investigated from an ethical perspective. Aim Building on previous socioempirical work that explored and set out the meaning of “care networks”, we start from the premise that live-ins are embedded in (...) a network of relationships which are essential for their employment and living situation. Methods The theoretical analysis draws on a network approach that takes care–ethical considerations into account. Using Joan Tronto’s four care–ethical phases, existing dependencies are described and reflected upon using the corresponding four care–ethical dimensions. The central questions are how dependencies in the live-in arrangement can be characterised based on the existing body of empirical studies and with a focus on the elements of power, dependency and trust in the ethical reflection on care. Results Based on this analysis, it becomes apparent that the ambivalence resulting from the simultaneity of different forms of asymmetry and mutual dependence is omnipresent in live-in arrangements and gives rise to seemingly contradictory forms of relationships and emotions. Responsibilities are vague and are constantly renegotiated on the basis of implicit assumptions and problematic role expectations and are also assigned without negotiation. Conclusions In the future, it will not only be necessary to better understand and clarify responsibilities at the micro level of the individual care arrangement from the various positions and roles and with a view to the changing processes of caring for another, but also to address the pressing ethical questions and problems in live-in arrangements at the meso and macro levels—enriched by care–ethical perspectives. (shrink)

Infants, children and adolescents with life-limiting and life-threatening disease need long-term care that may change according to disease’s natural history. With the primary goal of quality of life, the psychologist of pediatric palliative care network deals with a large variety of issues. Little consideration has been given to the variety of intervention areas of psychology in PPC that concern the whole life span of the patient and family. The PPC network is composed by (...) a multidisciplinary team of palliative care specialists that intervenes at home, in the hospital and in every place where the patient is living. The network coordinates different public health services to respond to clinical, psychosocial and spiritual needs. In these scenarios, the psychological need is not a single event but a moment inserted in the complexity of the child’s needs. This retrospective monocentric project consists of an analysis of characteristics of psychological interventions in our PPC service. The time frame taken into consideration is 2019–2020, analyzing the clinical records of 186 patients of Pediatric Palliative Care and Pain Service of Veneto Region. The areas that emerged in the analysis show how the intervention of the psychologist in PPC does not concern only end-of-life, but a series of topics that are significant for the family to guarantee psycho-social wellbeing oriented toward the best quality of life. In conclusion, these different topics highlight the complexity of the child and family experience. This variety must be taken into consideration, the psychologist must increase holistic support with a dedicated skills curriculum. (shrink)

“Readiness cohorts” are an innovation in clinical trial design to tackle the scarcity of time and people in drug studies. This has emerged in response to the challenges of recruiting the “right” research participants at the “right time” in the context of precision medicine. In this paper, we consider how the achievement of “readiness” aligns temporalities, biologies, and market processes of pharmaceutical innovation: how the promise of “willing bodies” in research emerges in relation to intertwined economic and biological time imperatives. (...) Drawing on long-term engagement with the field of Alzheimer’s disease prevention and interviews with researchers from academia and the pharmaceutical industry, we describe the discursive construction and practical arrangement of readiness. This paper contributes to understandings of temporal specificity, or “timing,” within prevention research and casts critical light on the way this specificity—the threshold for “trial readiness”—relates to an opaque and highly speculative drug development pipeline. Extending the study of biomedical potential, as that which holds promise but may not yet exist, we consider how absences operate in adaptive trials. By highlighting these absences, we outline an opportunity for socio-ethical research to intervene in the speculative gaps of drug development. (shrink)

Nurse engagement, empowerment and strong relationships among staff, residents and families, are essential to attract and retain a suitably qualified and skilled nursing workforce for safe, quality care. There is, however, limited research that explores engagement, empowerment and relational coordination in long‐term care (LTC). Nurses from an older persons’ mental health and dementia LTC unit in Australia participated in this study. Forty‐one nurses completed a survey measuring psychological empowerment, work engagement and relational coordination. Twenty‐nine nurses participated (...) in individual interviews to further explore these concepts. Although nurses reported high psychological empowerment and work engagement, their relationships with key stakeholders varied. Our findings suggest that nurses in LTC require both supports and opportunities to contribute as active members of the multiprofessional care team that includes tailored education, professional development and positive interactions within the care team. Regular support is needed to enable nurses to feel empowered, foster relationships and communication, and facilitate work engagement. Based on these findings, we suggest that it is important to find ways to ensure that all who provide care perceive that they are part of the whole care team and able to contribute to the care and well‐being of people in LTC. (shrink)

Americans who are afraid of living for many years with Alzheimer's might seek a way to end their lives early, when their dementia has just entered the moderate phase. There is no legal process for doing so. In this paper I argue that advance directives, in particular, are not a legal solution for those who prefer to die rather than suffer years of dementia. The problem is that an advance directive only works to hasten death when there is (...) a life-threatening illness for which one can refuse treatment; more often than not, Alzheimer's kills the self long before it kills the body. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Personal Identity and the Moral Authority of Advance DirectivesAndrea OttSection 1What is the metaphysical basis for respecting an advance directive first drawn up by an individual who is competent but who is at present rendered incapacitated?1 What are the roles of autonomy, personal values, integrity, and beneficence contained within said respect? In this section the positions of two prominent philosophers, Ronald Dworkin and Jeff McMahan, will be analyzed (...) with regard to the above questions. While the two thinkers have different scholastic orientations—with Dworkin primarily a philosopher of law and McMahan an ethicist and metaphysician—their conclusions regarding the respect of the wishes of the competent-turned-demented are remarkably similar. Namely, they both argue that the values and desires held by the previously competent agent trump any current (contrary) wishes. What this amounts to for Dworkin involves respecting the autonomy of the dominant, competent part of the life where countermanding such autonomy would be worse for the life as a whole. For McMahan this means respecting the precedent autonomy generated by the deep prudential unity relations which form the basis for egoistic concern; this concern is often the basis for drafting a directive regarding future care in the first place.I will argue in this paper that if McMahan is to be consistent with his position regarding prudential unity relations then he will, in fact, not arrive at the same conclusion as Dworkin.2 Consistency will demand that the demented patient’s directive should not be followed because the demented individual will, at best, be only weakly connected to the previously autonomous, decision-capable agent. Therefore, I will argue, the moral authority [End Page 38] of the advance directive will be similarly weakened. According to McMahan, Dworkin maintains that the precedent autonomous decision has moral authority, for he assumes that the individual in question is understood to be one “temporally extended individual,” so that what is best for her life now will, in fact, be what is best for her life as a whole (501). McMahan claims to support Dworkin’s conclusion, albeit for different reasons. McMahan supports the execution of the directive out of some sort of respect for the earlier “reasonably full and complete life with its own deep prudential unity” (502). I argue that McMahan, though ostensibly in agreement with Dworkin, will have to acknowledge that the weakened prudential unity relations which make the life as a whole matter less will also undercut the moral authority of the directive. In other words, the moral authority of an advance directive weakens as the prudential unity relations weaken.Ultimately, I believe, Lynne Baker and her metaphysics of constitution can provide the best direction when faced with dilemmas such as The Advance Directive. Baker can do this and avoid the charge of positing a “post-person” (the basis for McMahan’s criticism of other versions of psychological accounts of personal identity). I use her metaphysics of constitution and derivative properties within a novel explanation of prudential concern for the organism without positing identity. I argue, in section 2, that the organism made the decision for advance care when it was derivatively (in Baker’s sense) a person. We can thus avoid the charges of (1) new entities “popping” into existence and (2) a person binding a nonperson. Such a metaphysics of constitution may thus offer some hope of adjudication within debate concerning these matters.Now I shall turn to the thought experiment in The Ethics of Killing that forms the basis of this discussion. True to the general style of his work, Jeff McMahan asks the reader to consider a thought experiment. To avoid any misinterpretation of the facts, I reproduce The Advance Directive in full below:A woman whose life has been devoted to creative intellectual work finds herself in the very early stages of Alzheimer’s disease. Given her nature, her values, and the character of her previous life, she believes that for her to continue to live in a demented state would be horribly degrading, worse than simply ceasing to exist. She accepts, however, that her life will continue to be worth living as long as she remains competent; therefore to commit... (shrink)