Definition of the problem: The development and use of drugs aimed at a positive influence on the cognitive decline in patients suffering from Alzheimer's disease raises a number of ethical issues. Arguments: Among other things, these issues are concerned with the significance of these drugs for the patient's subjective well-being and quality of life and with aspects of informed consent to the use of these drugs, particularly in connection with their use in scientific medical research. Conclusion: The value and significance (...) of antidementia drugs depends not only on their effect on cognitive decline, but also on their wider significance for patients' quality of life and their primary carers. The subjective experience of those directly involved deserves more attention in research and practice. (shrink)

Angesichts begrenzter anderweitiger Behandlungsmöglichkeiten wird der Gabe von Antidementiva in der gegenwärtigen medizinischen Demenz-Behandlung eine besondere Bedeutung zugeordnet. Eine evidenzbasierte ethische Analyse unter den Kriterien des Wohlergehens, des Nicht-Schadens, der Autonomie und der Gerechtigkeit zeigt jedoch, dass die Bedeutung von Antidementiva oftmals überschätzt wird und die Erwartungen zu hoch sind: Die Wirksamkeit von Antidementiva ist rein symptomatisch, sie fällt bei einer großen Anzahl an Patienten nur gering aus und bleibt für manche Patienten ohne Nutzen. Zudem sind Antidementiva mit Schadensrisiken behaftet (...) und verbrauchen finanzielle Ressourcen, deren Verteilung auf verschiedenen Ebenen zur Diskussion steht. Angesichts dieser Schwierigkeiten tritt eine bislang nur unzureichend beantwortete Grundfrage des Umgangs mit Demenz-Patienten in den Vordergrund: An welchen Zielen soll sich die Behandlung orientieren? Der folgende Artikel analysiert diese Frage vor dem Hintergrund der Grundstrukturen der derzeitigen Demenz-Behandlung und fordert hier zu einem grundlegenden Umdenken auf. (shrink)

Alzheimer's disease remains the most common form of dementia. Dementia symptoms vary depending on individual personality, life experience, and social and cultural influences. As dementia progresses, involvement of multi-disciplinary health care professionals is needed to manage the disease. Alzheimer research is progressing rapidly. While 5% of all Alzheimer's disease may be genetically determined, the majority is not. Susceptibility genes can reveal the risk of contracting Alzheimer's disease. Early life risk factors such as education, nutrition, and vascular disease (...) may increase the likelihood of dementia in later life. In the United States, two acetylcholinesterase inhibitors have been approved as cognitive enhancers. Possible prevention and symptomatic treatment interventions have focused on estrogen replacement therapy, antioxidants, and anti-inflammatory medications. Research advances have improved the clinical management of dementia. Ethical implications to the patient, family, and society are multiple and remain challenging. (shrink)

Although there are exceptions, the principle of primum nil nocere remains the cornerstone of the practice of medicine. In the well known handbook, Goodman and Gilman’s The Pharmacological Basis of Therapeutics1 a case is presented which raises doubts about the permissibility of off-label administration of certain drugs to healthy troops as a preventive measure. The following citation from this handbook gives a clear description of the problem:"Prophylaxis in cholinesterase inhibitor poisoning. Studies in experimental animals have shown that pretreatment with (...) pyridostigmine reduces the incapacitation and mortality associated with “nerve agent” poisoning, particularly for agents, such as soman, that … ". (shrink)

Advances in cognitive neuroscience make cosmetic neurology in some form inevitable and will give rise to extremely difficult ethical issuesConsider the following hypothetical case study. A well heeled executive walks into my cognitive neurology clinic because he is concerned that he is becoming forgetful. It turns out that he is going through a difficult divorce and my clinical impression is that his memory problems stem from the stress he is experiencing. I place him on a selective seratonin reuptake inhibitor, sertraline, (...) and in a few weeks he feels better. Around this time his 13 year old daughter has difficulty at school and is diagnosed by the school psychologist as having attention deficit disorder. I place her on adderall, a stimulant combination drug, which seems to help with her behaviour in school. My patient then comes to me because he is experiencing the “tip of the tongue” phenomena more frequently. He is concerned that his word finding difficulty interferes with his ability to function in high level meetings. I suggest we try a cholinesterase inhibitor to see if this helps. I am careful to explain that the Food and Drug Administration does not approve such a use for this medication. He wants to try it and is pleased with the results.A few months later, this patient visits me with his 16 year old son, a talented middle distance runner. His father thinks if he were just a bit better, among the elite high school runners in the state, he would be far more competitive as an applicant for selective colleges. We discuss various options. Because of a recent report that sildenafil, which is used conventionally for male impotence, may improve oxygen carrying capacity, I prescribe this medication. The son does not object.Encouraged by these pharmacologic successes, my patient …. (shrink)

Background Despite the great benefits of intelligent assistive technology (IAT) for dementia care – for example, the enhanced safety and increased independence of people with dementia and their caregivers – its practical adoption is still limited. The social and ethical issues pertaining to IAT in dementia care, shaped by factors such as culture, may explain these limitations. However, most studies have focused on understanding these issues within one cultural setting only. Therefore, the aim of this study was (...) to explore and compare the attitudes of Israeli and German dementia experts toward IAT in dementia care, to contribute to a more cultural-comparative perspective. Methods Semi-structured interviews were conducted with 35 experts (15 Israelis and 20 Germans) in key roles in health and community services for people with dementia as well as in the fields of dementia and IAT (e.g., computer science, electrical/biomedical engineering, ethics, nursing, and gerontology). Thematic content analysis was used to analyze the data. Findings Israeli and German experts identified the same social accelerators in the development and implementation of IAT in dementia care (i.e., changes in family structure and social digitization) and benefits of adopting IAT (e.g., enhancing the safety of people with dementia and increasing their independence). However, there were differences in inhibitor/risk assessments between the two groups. Namely, economic considerations and the cognitive capacity of people with dementia were identified by both groups as inhibitors, while Israeli experts additionally reported stigma and ageism. Whereas both groups agreed that IAT might reduce human connection, and that the technology is not yet reliable enough, German experts highlighted concerns regarding privacy; in contrast, Israeli experts prioritized safety over privacy. Conclusions Our research findings allow for the identification of relevant similarities but also important differences between German and Israeli experts’ perspectives. As such, an important basis has been provided for a more in-depth discussion regarding where, why, and how culturally-sensitive technology development is needed. (shrink)

It is widely accepted that ethical leadership is beneficial for the organization, the leader, and followers. Yet, little has been said about potential limitations of ethical leadership, particularly boundary conditions involving the same person perceived to display ethical leadership. Drawing on conservation of resources theory, we argue that supervisor-induced hindrance stress and job hindrance stress are factors linked to the supervisor and work environment that may limit the positive impact of ethical leadership on employee deviance and turnover intentions. Specifically, we (...) expect that high levels of hindrance stress drain resources, specifically perceptions of social support, by inhibiting the completion of work, particularly in combination with the high expectations of ethical leaders. We test our model across two time-lagged field studies. Our results demonstrate that supervisor-induced hindrance stress mitigates some of the beneficial impact of ethical leadership and that job hindrance stress further strains these relationships. Overall, our results suggest that both forms of hindrance stress jointly impact the effectiveness of ethical leadership on important outcomes, and do so partly because of their influence on perceived social support. We discuss theoretical contributions to the ethical leadership and stress bodies of literature, as well as practical implications for managers and organizations wishing to develop ethical leaders. (shrink)

The new class of anti-inflammatory drugs, the COX-2 inhibitors, have been commercially successful to the point of market dominance within a short time of their launch. They attract a price premium on the basis that they are associated with fewer adverse gastric events than traditional anti-inflammatory drugs. This marketing continues even though a pivotal safety study with one of the COX-2 inhibitors, rofecoxib, showed a significant increase in myocardial infarction with rofecoxib use compared with a traditional anti-inflammatory drug. (...) This finding has led to a series of publications containing pooled analyses of existing data that both support and refute the possibility of increased cardiovascular risk with COX-2 inhibitors.These medical journal publications have served to obfuscate rather than provide guidance for medical practitioners. Consideration of a research ethics committee approach to this issue suggests that it would deal with the controversy in a straightforward manner—namely, it would simply inform research participants of the trial results with rofecoxib. The certainty of this research ethics committee approach raises the issue of whether it should be applied in normal medical practice outside of the research environment. A consideration of the legal tests for disclosure of information suggests that therapeutic medical practice should mirror that within the research environment, in this case. (shrink)

In this article, a teleological model for analysis of everyday ethical situations in dementia care is used to analyse and clarify perennial ethical problems in nursing home care for persons with dementia. This is done with the aim of describing how such a model could be useful in a concrete care context. The model was developed by Sandman and is based on four aspects: the goal; ethical side-constraints to what can be done to realize such a goal; structural (...) constraints; and nurses’ ethical competency. The model contains the following main steps: identifying and describing the normative situation; identifying and describing the different possible alternatives; assessing and evaluating the different alternatives; and deciding on, implementing and evaluating the chosen alternative. Three ethically difficult situations from dementia care were used for the application of the model. The model proved useful for the analysis of nurses’ everyday ethical dilemmas and will be further explored to evaluate how well it can serve as a tool to identify and handle problems that arise in nursing care. (shrink)

People with dementia have previously not been active participants in research, with ethical difficulties often being cited as the reason for this. A wider inclusion of people with dementia in research raises several ethical and methodological challenges. This article adds to the emerging debate by reflecting on the ethical and methodological issues raised during an interview study involving people with dementia and their spouses. The study sought to explore the impact of living with dementia. We argue (...) that there is support for the inclusion of people with dementia in research and that the benefits of participation usually far outweigh the risks, particularly when a `safe context' has been created. The role of gatekeepers as potentially responsible for excluding people with dementia needs further consideration, with particular reference to the appropriateness of viewing consent as a primarily cognitive, universalistic and exclusionary event as opposed to a more particularistic, inclusive and context relevant process. (shrink)

The COVID-19 pandemic has had a devastating impact on care homes in the United Kingdom, particularly for those residents living with dementia. The impetus for this article comes from a recent review conducted by the authors. That review, a qualitative media analysis of news and academic articles published during the first few months of the outbreak, identified ethical care as a key theme warranting further investigation within the context of the crisis. To explore ethical care further, a set of (...) salient ethical values for delivering care to care home residents living with dementia during the pandemic was derived from a synthesis of relevant ethical standards, codes and philosophical approaches. The ethical values identified were caring, non-maleficence, beneficence, procedural justice, dignity in death and dying, well-being, safety, and personhood. Using these ethical values as a framework, alongside examples from contemporaneous media and academic sources, this article discusses the delivery of ethical care to care home residents with dementia within the context of COVID-19. The analysis identifies positive examples of ethical values displayed by care home staff, care sector organisations, healthcare professionals and third sector advocacy organisations. However, concerns relating to the death rates, dignity, safety, well-being and personhood – of residents and staff – are also evident. These shortcomings are attributable to negligent government strategy, which resulted in delayed guidance, lack of resources and Personal Protective Equipment, unclear data, and inconsistent testing. Consequently, this review demonstrates the ways in which care homes are underfunded, under resourced and undervalued. (shrink)

The role of acetylcholinesterase (AChE) in neurotransmission is well known. But long before synapses are formed in vertebrates, AChE is expressed in young postmitotic neuroblasts that are about to extend the first long tracts. AChE histochemistry can thus be used to map primary steps of brain differentiation. Preceding an possibly inducing AChE in avian brains, the closely related butyrylcholinesterase (BChE) spatially fore-shadows AChE-positive cell areas and the course of their axons. In particular, before spinal motor axons grow, their corresponding rostral (...) sclerotomes and myotomes express BChE, and both their neuronal source and myotomal target cells express AChE. Since axon growth has been found inhibited by acetylcholine, it is postulated that both cholinetsreases can attract neurite growth cones by neutralizing the inhibitor. Thus, the early expression of both cholinesterases that is at least partially independent from classical cholinergic synaptogenesis, sheds new light on the developmental and medical significance of these enzymes. (shrink)

Feeding difficulties in older patients who are suffering from dementia present problems with balancing conflicting ethical principles. They have been considered by several writers in recent years, and the views of nursing and care staff have been studied in different contexts. The present study used focus groups to explore the way in which nursing and care staff in a National Health Service trust deal with conflict between ethical principles in this area. Three focus groups were convened, one each from (...) the staff of three wards caring for patients with dementia. Case histories were discussed and transcripts analysed. It emerged that staff were aware of making fine judgements of utility concerning the spectrum of feeding methods available. Informants gave some weight to the principle of autonomy, but sought to balance that against their commitment to care. In explaining their perspectives, informants gave more weight to personal attitudes and trust culture than to professional ethics. (shrink)

Background: Persons with dementia are at risk of malnutrition and thus in need of assistance during mealtimes. Research suggest interventions for caregivers to learn how to facilitate mealtimes and eating, while other suggest a working environment enabling the encounter needed to provide high-quality care. However, the phenomenon of caring for this unique population needs to be elucidated from several perspectives before suggesting suitable implications that ensure their optimal health. Objectives: To illustrate the meanings within caregivers’ experiences of caring for (...) persons with dementia during mealtime situations. We also measured weight and food intake among individuals with dementia to explain better the phenomenon of caring for them during mealtimes. Methods: Mixed method including focus group interviews with seven caregivers analyzed using phenomenological hermeneutics. In addition, for nine persons with dementia, weight and food intake were collected and descriptive statistics were calculated. Ethical considerations: Ethical review was obtained from an ethics committee, and all caregivers signed a consent form after being informed on the issue of research ethics. Relatives for persons with dementia were informed and signed the consent. In addition, throughout the study, the persons’ expressions were observed aiming to respect their vulnerability, integrity, and dignity. Findings: One theme emerged from interviews (struggling between having the knowledge and not the opportunity), which was built upon three subthemes (being engaged and trying; feeling abandoned and insufficient; being concerned and feeling guilty). Seven of nine persons with dementia lost a minimum of 1.3 kg of weight and ate a maximum of 49.7% of the food served. Conclusion: Caregivers struggle because they have knowledge about how to provide high-quality care but are unable to provide this care due to organizational structures. The weight loss and insufficient eating among the persons with dementia may support this conclusion. Sufficient time for adequate care should be provided. (shrink)

The purpose of this study was to explore situations experienced by 12 health-care providers working in two nursing homes. Individual interviews, using a narrative approach, were conducted. A phenomenological–hermeneutical method, developed for researching life experiences, was applied in the analysis. The findings showed that good care situations are experienced when the time culture is flexible, the carers act in a sovereign time rhythm, not mentioning clock time or time as a stress factor. The results are discussed in terms of anthropological (...) and sociological theory: time as event and action and flexible time cultures. Care settings for persons with dementia represent many challenges, such as a heavy workload and time strain. Time ethics is a construction, understanding time used in caring for persons suffering from dementia, which involves a mature, responsible and flexible nursing approach to these patients. (shrink)

Background Challenging false beliefs are common situations among people living with dementia. They frequently imply time-shifts, that is, situations in which the person re-lives past experiences. Since they have emotional implications and important ethical implications, they are difficult to manage by caregivers, who are faced with the decision of telling or not telling the truth. Aims The study aimed to explore professional staff’s perceptions of common and best practices to manage a situation in which a person living with (...) class='Hi'>dementia is having a false belief, specifically a time-shift. The study compares technical staff’s and assistant carers’ responses. Participants and research context Forty-two staff members working in four Spanish long-term care facilities were interviewed. 21 were assistant carers and 21 were technical staff. Research design This study involved a qualitative design, content-analyzing participant’s responses to semi-structured interviews. Participants read a vignette about a person living with dementia having a time-shift and were asked (1) how a situation like that is commonly managed and (2) how it should be managed. Ethical considerations The principles of informed consent, confidentiality, and assessment of consequences for participants were observed throughout the entire study, which was approved by the University of Barcelona Ethics Committee (IRB 00003099). Written participant’s consent was obtained prior to interviews. Findings All the participants mentioned having experienced a situation similar to that described in the vignette. In the case of common practices, lying was the most frequently mentioned strategy. As for best practices, lying and telling the truth were mentioned as well as responses that lie in-between, such as distracting or relaxing. However, most assistant carers reported that they do not know how a challenging false belief should be managed. Conclusion Our findings stress the importance of organizational guidelines and staff development in the management of challenging false beliefs (and specifically time-shifts) in PLWD. (shrink)

Patients with advanced dementia suffer from severe cognitive and functional impairment, including eating disorders. The focus of our research is on the issue of life-sustaining treatment, specifically on the social and ethical implications of tube feeding. The treatment decision, based on values of life and dignity, involves sustaining lives that many people consider not worth living. We explore the moral approach to caring for these patients and review the history of the debate on artificial nutrition and hydration showing the (...) impact of the varying perceptions of the value of these patients' lives on changing norms. We argue that in light of the value of solidarity, decisions about life-sustaining treatment for patients with advanced dementia should be made on a case by case basis, as with any other patient, in consideration of the medical implications of the intervention which might best serve the goals of care for the individual patient. (shrink)

It has now become a realistic prospect for smart care to be provided at home for those living with long-term conditions such as dementia. In the contemporary smart care scenario, homes are fitted with an array of sensors for remote monitoring providing data that feed into intelligent systems developed to highlight concerning patterns of behaviour or physiological measurements and to alert healthcare professionals to the need for action. This paper explores some ethical issues that may arise within such smart (...) care systems, focusing on the extent to which ethical issues can be addressed at the system design stage. Artificial intelligence has been widely portrayed as an ethically risky technology, posing challenges for privacy and human autonomy and with the potential to introduce and exacerbate bias and inequality. While broad principles for ethical artificial intelligence have become established, the mechanisms for governing ethical artificial intelligence are still evolving. In healthcare settings the implementation of smart technologies falls within the existing frameworks for ethical review and governance. Feeding into this ethical review there are many practical steps that designers can take to build ethical considerations into the technology. After exploring the pre-emptive steps that can be taken in design and governance to provide for an ethical smart care system, the paper reviews the potential for further ethical challenges to arise within the everyday implementation of smart care systems in the context of dementia, despite the best efforts of all concerned to pre-empt them. The paper concludes with an exploration of the dilemmas that may thus face healthcare professionals involved in implementing this kind of smart care and with a call for further research to explore ethical dimensions of smart care both in terms of general principles and lived experience. (shrink)

The use of Intelligent Assistive Technology in dementia care opens the prospects of reducing the global burden of dementia and enabling novel opportunities to improve the lives of dementia patients. However, with current adoption rates being reportedly low, the potential of IATs might remain under-expressed as long as the reasons for suboptimal adoption remain unaddressed. Among these, ethical and social considerations are critical. This article reviews the spectrum of IATs for dementia and investigates the prevalence of (...) ethical considerations in the design of current IATs. Our screening shows that a significant portion of current IATs is designed in the absence of explicit ethical considerations. These results suggest that the lack of ethical consideration might be a codeterminant of current structural limitations in the translation of IATs from designing labs to bedside. Based on these data, we call for a coordinated effort to proactively incorporate ethical considerations early in the design and development of new products. (shrink)

This article is based on a qualitative longitudinal study that followed the subjective experiences of both people living with dementia and their family members during the early stages of the illness. The purpose of this article is to describe and reflect on the ethical and methodological issues that occurred during data collection. The article focuses on the situation of the person with dementia and the family member and the role of the researcher when conducting the research interviews. Based (...) on the results of this study, conducting research interviews with people with dementia and their family members poses several ethical and methodological challenges that must be addressed. In doing so, ethically sound dementia-specific research methods will be actively developed enhancing our understanding of living with dementia and providing new insights into the care of people with dementia and their family members. (shrink)

Background: In Israel, caring for people with end-stage dementia confined to home is mainly done by home care units, and in some cases by home hospice units, an alternative palliative-care service. Because life expectancy is relatively unknown, and the patient’s decision-making ability is poor, caring for this unique population raises ethical dilemmas regarding when to define the disease as having reached a terminal stage, as well as choosing between palliative and life-prolonging-oriented care. Objectives: Exploring and describing differences and similarities (...) of professional staff members’ (PSMs’) and family caregivers’ perceptions of caring for people with end-stage dementia in two different settings. Design: Qualitative research, using semi-structured interviews analyzed through a thematic content–analysis approach. Participants: Sixty-four interviews were conducted (24 PSMs and 40 family caregivers) in two care-settings—home hospice unit and home care unit. Ethical considerations: The study was approved by the Ethics Committee (BBL00118-17). Findings: We found dilemmas regarding palliative care to be the main theme, including definition of the disease as terminal, choosing “comfort” over “life-prolonging,” clarifying patients’ wishes and deciding whether or not to use artificial feeding. Discussion: Both PSMs and family caregivers deal with ethical dilemmas and have reached different conclusions, both legitimate. Comprehending dementia as a terminal disease influenced participants’ perceptions of the relevancy of palliative care for people with end-stage dementia. Discrepancies between PSMs and family caregivers in caring for people with end-stage dementia were found in both home hospice unit and home care unit environments, raising potential conflicts regarding decisions for end-of-life care. Conclusions: Communication between PSMs and family caregivers is crucial for the discussion about the discrepancies regarding the unique dilemmas of caring for people with end-stage dementia and bridging the gap between them. Lack of communication and resources can hamper the provision of an acceptable solution for quality and equality of care in the best interest of people with end-stage dementia. (shrink)

Background: Values are the basis of nursing practice, especially in making decisions about complicated ethical issues. Despite their key role in nursing, little information exists on the factors affecting their development and manifestation in nursing students. Objective: This study identifies and describes the facilitators and inhibitors of the development and manifestation of professional values based on the experiences of nursing students and instructors and nurses. Research design: Data were collected through 29 semi-structured interviews and two focus group interviews in (...) 2013–2015 and were analyzed using the conventional content analysis method of Elo and Kyngäs. Participants and research context: In total, 18 nursing undergraduates, five nursing instructors, and five nurses from Shiraz University of Medical Sciences and one of the teaching hospitals in Shiraz were selected through purposive sampling. Ethical considerations: The research was approved by the Ethics Committee of Shiraz University of Medical Sciences and the teaching hospital examined. Findings: The findings consisted of two categories: personal and environmental factors. Personal factors consisted of the two subcategories of personal stimuli (work experience and past relationships, inner beliefs and acting on values, belief in God and a divine worldview) and personal inhibitors (the lack of professional motivation and enthusiasm, negative emotions). Environmental factors consisted of the two subcategories of environmental stimuli (cooperation, order and discipline) and environmental inhibitors (unfavorable work environment, society’s negative attitude toward nursing, the violation of rights). Discussion and conclusion: Given the impact of personal and environmental factors on the development and manifestation of professional values in nursing students, it is upon the education authorities to take account of them in their planning, and nursing managers are also recommended to further address these factors in their development of a proper work environment, provision of standard facilities and removal of barriers. (shrink)

In this paper, we examine the case of psychedelic medicine for Alzheimer’s disease and related dementias (AD/ADRD). These “mind-altering” drugs are not currently offered as treatments to persons with AD/ADRD, though there is growing interest in their use to treat underlying causes and associated psychiatric symptoms. We present a research agenda for examining the ethics of psychedelic medicine and research involving persons living with AD/ADRD, and offer preliminary analyses of six ethical issues: the impact of psychedelics on autonomy and (...) consent; the impact of “ego dissolution” on persons experiencing a pathology of self; how psychedelics might impact caregiving; the potential exploitation of patient desperation; institutional review boards’ orientation to psychedelic research; and methods to mitigate inequity. These ethical issues are magnified for AD/ADRD but bear broader relevance to psychedelic medicine and research in other clinical populations. (shrink)

Some care home residents with dementia have the capacity, some do not. Staff may need to make decisions about administering care interventions to someone whom they believe lacks the capacity to consent to it, but also resists the intervention. Such intervention can be termed forced care. The literature on forced care (especially reflecting empirical work) is scant. This study aims to investigate how the ethics of forced care is navigated in practice, through ten semi-structured interviews with staff in (...) 1 care home in the North East of England. Participants generally avoided situations where there was overt restraint, taking a flexible approach by either modifying their own behaviour or using covert techniques. The underlying justification given for decisions or actions tended to be that the recipients of care should be valued because of their intrinsic worth as fellow human beings. Participants attempted to put themselves in the position of the resident or think about what a beloved elderly relative would want. The intervention seemed acceptable to staff if the resident was not distressed. When staff were presented with scenario-based questions around capacity they were more successful than when asked direct questions relating to the Mental Capacity Act. Scenario-based training may be helpful to reinforce familiarity and facility with the principles of the Mental Capacity Act. (shrink)

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

Background Biomarker research is gaining increasing attention focusing on the preclinical stages of the disease. Such interest requires special attention for communication and disclosure in clinical contexts. Many countries give dementia a high health policy priority by developing national strategies and by improving guidelines addressing disclosure of a diagnosis; however, risk communication is often neglected. Main text This paper aims to identify the challenges of disclosure in the context of dementia prediction and to find out whether existing clinical (...) guidelines sufficiently address the issues of disclosing a dementia diagnosis and of disclosing the risk of developing dementia in asymptomatic and MCI stage. We will examine clinical guidelines and recommendations of three countries regarding predictive testing and diagnostic disclosure in dementia and Mild Cognitive Impairment to show their potentials and limits. This will provide a background to address ethical implications of predictive information and to identify ways how to proceed further. We will start by examining the guidelines and recommendations by focusing on what there is already and what is missing regarding the challenges of disclosing dementia prediction and MCI. Then, we will highlight the novel ethical issues generated by the shift to identify preclinical stages of the disease by biomarkers. We will argue for the need to develop guidelines for disclosing a risk status, which requires different considerations then disclosing a diagnosis of dementia. Finally, we will make some suggestions on how to address the gap and challenges raised by referring to German Stakeholder Conference, which presents us a good starting point to the applicability of involving stakeholders. Conclusions This paper underlines the need to develop empirically based guidelines that address the ethical and social strategies for risk communication of dementia prediction by genetic as well as non-genetic biomarkers. According to our analysis, the guidelines do not address the new developments sufficiently. International efforts should aim for specific guidelines on counseling, communicating risk and disclosing results. We argue that guidelines on disclosure should be developed by involving various stakeholders and should be informed by socio-empirical studies involving laypersons’ needs and wishes regarding risk communication. (shrink)

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

Dementia is among the most terrible diseases humans can have. Of all of the things that careproviders could do to enhance the quality of life that persons with dementia have, which ones should they do?

Deception is common in dementia care, although its moral legitimacy is questionable. This paper conceptually clarifies when does dementia care involve deception and argues that care ethics is an appropriate ethical framework to guide dementia care compared with the mainstream ethical theories that emphasize abilities. From a perspective of care ethics, this paper claims that morally defensible deception is context-specific, embodied as a caring process that needs to be identified through instant, creative and interactive care (...) procedures. According to this argument, it further analyses and concludes the moral rationality of deception in five common cases. While deception is morally justified in many situations, another concern is that it is usually not the last resort but a means of convenience. As the ability to interact, autonomy and dignity of persons with dementia (PWDs) are generally ignored; nurses need more training and education to master the essential procedures to ensure that the value of authenticity and autonomy is maintained and considered throughout dementia care. (shrink)

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

Wandering is a symptom of dementia that can have devastating consequences on the lives of persons living with dementia and their families and caregivers. Increasingly, caregivers are turning towards electronic tracking devices to help manage wandering. Ethical questions have been raised regarding these location-based technologies and although qualitative research has been conducted to gain better insight into various stakeholders' views on the topic, developers of these technologies have been largely excluded. No qualitative research has focused on developers’ perceptions (...) of ethics related to electronic tracking devices. To address this, we performed a qualitative semi-structured interview study based on grounded theory. We interviewed 15 developers of electronic tracking devices to better understand how they perceive ethical issues surrounding the design, development, and use of these devices within dementia care. Our results reveal that developers are strongly motivated by moral considerations and believe that including stakeholders throughout the development process is critical for success. Developers felt a strong sense of moral obligation towards topics within their control and a weaker sense of moral obligation towards topics outside their control. This leads to a perceived moral boundary between development and use, where some moral responsibility is shifted to end-users. (shrink)

The ethical problems associated with dementia have been thrown into focus by the ageing population. The elderly form a disadvantaged group in society and the author wonders if it is morally justified to pursue research into ways of arresting pathology without concomitant attention being paid to the quality of life of the surviving elderly. Precise diagnosis of dementia requires invasive, and potentially injurious, brain biopsy. Recent thinking has pointed to some of the advantages of biopsy. The question of (...) consent in a patient with impaired mental function has to be borne in mind. As for the special ethical problems associated with Huntington's chorea, it is argued there is no justification for withholding information from, or for authoritarian direction of, patients and 'at risk' relatives but the importance of full discussion before undertaking predictive procedures is stressed. (shrink)

Dementia is a topic of enormous human, medical, economic, legal and ethical importance. Its importance grows as more of us live longer. The legal and ethical problems it raises are complex, intertwined and under-discussed. This book brings together contributions from clinicians, lawyers and ethicists – all of them world leaders in the field of dementia – and is a comprehensive, scholarly yet accessible library of all the main (and many of the fringe) perspectives. It begins with the medical (...) facts: what is dementia? Who gets it? What are the current and future therapeutic and palliative options? What are the main challenges for medical and nursing care? The story is then taken up by the ethicists, who grapple with questions such as: is it legitimate to lie to dementia patients if that is a kind thing to do? Who is the person whose memory, preferences and personality have all been transformed by their disease? Should any constraints be placed on the sexual activity of patients? Are GPS tracking devices an unpardonable interference with the patient's freedom? These issues, and many more, are then examined through legal lenses. The book closes with accounts from dementia sufferers and their carers. It is the first and only book of its kind, and the authoritative text. (shrink)

Maddocks, Ian This is an edited record of the presentation given by 2013 Senior Australian of the Year Professor Ian Maddocks at the Centre's conference held on palliative care on 3 October 2013. Professor Maddocks reflects on the challenges which ageing brings - challenges which we face as individuals, as health professionals, and as a society. There is wisdom which comes only from generous commitment and long experience. Many people recognised that wisdom in this presentation.

Background: Many nursing homes appear as multicultural workplaces where the majority of healthcare providers have an ethnic minority background. This environment creates challenges linked to communication, interaction and cultural differences. Furthermore, the healthcare providers have varied experiences and understanding of what quality care of patients with dementia involves. Purpose: The aim of this study is to illuminate multi-ethnic healthcare providers’ lived experiences of their own working relationship, and its importance to quality care for people with dementia. Research design: (...) The study is part of a greater participatory action research project: ‘Hospice values in the care for persons with dementia’. The data material consists of extensive notes from seminars, project meetings and dialogue-based teaching. The text material was subjected to phenomenological-hermeneutical interpretation. Participants and research context: Participants in the project were healthcare providers working in a nursing home unit. The participants came from 15 different countries, had different formal qualifications, varied backgrounds and ethnic origins. Ethical considerations: The study is approved by the Norwegian Regional Ethics Committee and the Norwegian Social Science Data Services. Findings: The results show that good working relationships, characterized by understanding each other’s vulnerability and willingness to learn from each other through shared experiences, are prerequisites for quality care. The healthcare providers further described ethical challenges as uncertainty and different understandings. Discussion: The results are discussed in the light of Lögstrup’s relational philosophy of ethics and the concepts of vulnerability, ethic responsibility, trust and openness of speech. Conclusion: The prerequisite for quality care for persons with dementia in a multicultural working environment is to create arenas for open discussions between the healthcare providers. Leadership is of great importance. (shrink)

The aim of the present study was to describe how registered nurses in nursing homes ensure legal security, good and safe nursing care and uphold the dignity of nursing home residents with severe dementia without violating residents’ integrity. Semi-structured interviews were conducted with 10 charge nurses in a county in central Sweden. The transcribed interviews were examined using manifest and latent content analyses. The manifest analysis identified actual local routines involving coercive treatment and registered nurses’ descriptions of complications and (...) alternative measures. The latent analysis resulted in three themes describing nursing strategies: one with coercive treatment, one with coercive treatment under specific circumstances and one to prevent coercive treatment. Interpretations of legal terms regarding coercive treatment and inadequate gerontological nursing training and understaffing seem to preserve the use of coercive treatment. (shrink)

The care of elderly people with dementia poses ethical problems in several respects. This paper considers the problems in relation to treatment, withdrawal of treatment (including nutrition and hydration) in terminal care, and consent to involvement in research. It is ultimately the responsibility of the physician to take the decision about whether or not to proceed with treatment, according to the best interests of the patient, but nurses, families and significant others can be involved in making the decision. When (...) withdrawal of treatment or withdrawal of nutrition and hydration in the terminal stages of dementia are being considered it is necessary to take into account the nature of the treatment, whether or not it is extraordinary, and the goals of continued nutrition. In some circumstances it may be possible for them to be withdrawn. Only research which is aimed at evaluating treatment for dementia may involve subjects who are suffering from dementia. Soigner des personnes âgés souffrant de la démence pose plusieurs problèmes éthiques. Cet article considère les problèmes concernant le traitement, cessation de traitement (y inclus nutrition et hydration) dans la phase terminale, et consentement de participation dans les recherches. C'est ultimement la décision du docteur si oui ou non de continuer avec le traitement selon les meilleurs intérêts du malade, mais les infirmiers/ères, les familles et les personnes importantes autour du malade peuvent jouer un rôle dans les décisions. Si la cessation de traitement ou cessation de nutrition et hydration dans la phase terminale de démence est envisagée il est nécessaire de tenir compte de la nature du traitement, s'il est 'extraordinaire' ou non, et le but de nutrition si on continuait. Dans quelques circonstances il est possible de les discontinuer. Seuls les recherches qui ont pour but d'évaluer les traitements pour la démence peuvent utiliser des personnes souffrant de démence. Die Pflege von älteren Personen mit Demenz stellt einige ethische Probleme. Dieser Artikel betrachtet die Probleme in Beziehung auf die Pflege, Zurückziehung von Pflege (auch von Nahrung und Getrank) der Sterbenden und der Entscheidung, in der Forschung beteiligt zu sein. Der Arzt hat die schlussendliche Verantwortung über die Entscheidung ob mit der Pflege weitergefahren werden soll oder nicht nach dem besten Interesse der Patienten. Aber das Krankenpflegepersonal, die Familie und bedeutende Andere können auch an dieser Entscheidung teilnehmen. Wenn es sich um Zurückziehung der Pflege, oder Zurückziehung von Nahrung oder Getrank in der Sterbepflege von Personen mit Demenz handelt, is es nötig, das Wesen der Pflege und die Ziele einer fortfahrenden Nahrung zu kennen. In gewissen Fällen ist es möglich, diese zurück zu ziehen. Es sollen nur Patienten mit Demenz an Forschungen teilnehmen die über die Pflege der Demenz einschätzt. (shrink)

In the case of GK, an 82-year-old dementia patient residing in a long-term care (LTC) facility, several ethical challenges arise in responding to his daughter’s concerns about his potential inappro...

Advance directives for withholding life-saving treatment are controversial for dementia patients whose previously expressed wishes conflict with their currently expressed desires. To illustrate this ethical dilemma, McMahan conceives a hypothetical case in which an intellectually proud creative woman signs an advance directive stipulating her refusal to receive life-saving treatment if she contracts a fatal condition with dementia. However, when she develops dementia and forgets this advance directive, she contracts pneumonia and now expresses a desire to live. In (...) response to such dilemmas, scholars like Norman Cantor have defended the moral authority of advance directives by giving credence to one’s prior competent wishes over one’s current incompetent preferences. I argue that their arguments, which are rooted in the principle of respect for autonomy, operate under ableist assumptions about incompetent persons and exclude other important features of respect. I propose an ethics of care model as an alternative moral approach that reconceptualises respect as a matter of caring about people’s contemporaneous interests, even if they are not competently conceived. It fosters the virtues of care by encouraging healthcare providers to recognise dementia patients as legitimate narrative agents capable of authoring their own evolving life story. I argue that the ethics of care model not only provides an ethical defence of the creative woman’s current incompetent desire to live despite her advance directive, but also vindicates our moral intuitions about what it means to demonstrate respect to dementia patients. (shrink)

Background Interventions targeting healthcare professionals’ confidence in managing ethical issues in dementia care are limited despite documented positive effects of educational programs on staff knowledge and self-efficacy. However, inconsistencies in the literature regarding the impact of educational programs underscore the need for targeted interventions. The CARE intervention, specifically designed to enhance confidence in ethical decision-making, aims to address this gap. This study evaluates the effectiveness of the CARE intervention in enhancing the ethical self-efficacy of healthcare professionals caring for people (...) with dementia, particularly those with initially low levels of self-efficacy. Methods Using a non-experimental pre-post evaluation design, the CARE intervention was administered to healthcare professionals (n = 86), measuring ethical self-efficacy pre-and post-intervention. We hypothesized significant differences in ethical self-efficacy mean scores pre- and post-intervention for all participants, particularly those with low pre-measurement scores, whom we expected to benefit most from the intervention. Statistical analysis included paired t-tests and Wilcoxon tests for the low pre-measurement subgroup analysis. Results While no significant change was observed in the entire sample, participants with low initial self-efficacy showed a statistically significant improvement post-intervention. Conclusions The CARE intervention holds promise in improving ethical self-efficacy among healthcare professionals with initial low confidence levels. Targeted interventions are essential in addressing confidence gaps in managing ethical challenges in dementia care, with implications for professional well-being and quality of care. Further research should explore long-term effects and expand sample size to enhance generalizability and sustainability of findings. (shrink)

The aim of the present study was to describe how registered nurses in nursing homes ensure legal security, good and safe nursing care and uphold the dignity of nursing home residents with severe dementia without violating residents’ integrity. Semi-structured interviews were conducted with 10 charge nurses in a county in central Sweden. The transcribed interviews were examined using manifest and latent content analyses. The manifest analysis identified actual local routines involving coercive treatment and registered nurses’ descriptions of complications and (...) alternative measures. The latent analysis resulted in three themes describing nursing strategies: one with coercive treatment, one with coercive treatment under specific circumstances and one to prevent coercive treatment. Interpretations of legal terms regarding coercive treatment and inadequate gerontological nursing training and understaffing seem to preserve the use of coercive treatment. (shrink)

The use of psychosocial interventions for people with dementia is common and recommended because they focus on the underlying problem and well-being of the person. The promotion of well-being is a relevant dimension in person-centred care, where the aim is to confirm the person’s ‘personhood’. Most literature about ethics in dementia care instructs us on how and when to include people with dementia in our research. Little is written about the ethical aspects regarding the use of (...) psychosocial interventions in daily care. In clinical practise, several challenges arise about the use of psychosocial interventions. Those include questions about the person’s ability to participate in decision-making and how we know what is best for them. Furthermore, we must consider what kinds of psychosocial interventions are best for everybody, or if intervention causes discomfort for the person. This article emphasizes the necessity to consider the ethical aspects of the implementation of psychosocial interventions while taking into consideration the persons individual needs. A particular ethical challenge arises when a person with dementia is unable to express themselves verbally. Therefore, it is essential that the staff know the history and preferences of each person with dementia. The ethical aspects of psychosocial interventions for people with dementia will be discussed using Beauchamp and Childress four ethical principles: respect for autonomy, beneficence, non-maleficence and justice. The person-centred approach proposed by Kitwood’s and Brooker. (shrink)

As the number of elderly prisoners increases in the UK and other Western countries, there will be individuals who develop dementia whilst in custody. We present two case vignettes of men with dementia in English prisons, and explore some of the ethical implications that their continuing detention raises. We find little to support their detention in the various purposes of prison put forward by legal philosophers and penologists, and conclude by raising some of the possible implications of The (...) Human Rights Act 1998. (shrink)

Few clinical situations arouse more emotion and drama and lead to more conflict in decision-making than cardio-pulmonary resuscitation . The procedure was described as potentially beneficial more than 40 years ago. However, its efficacy and place in the care of the frail elderly have taken a long time to be established. In the world of secular medical practice, there are many situations when CPR may be provided to elderly, frail and cognitively compromised individuals for whom its clinical benefit is questionable. (...) In those patients suffering from dementia, surrogates are responsible for decision-making, which complicates the process. When the clinical uncertainty is coupled with strong cultural and religious influences, as within Orthodox Judaism, the development of an acceptable approach to cardiac arrest is more challenging. A clinically sound, ethically defensible and religiously sensitive approach to CPR requires a deep understanding of all the factors involved in the decision-making process and may require periodic re-evaluation not only by clinicians but by religious scholars and leaders. (shrink)

A good deal of concern is generated when a person with dementia wanders. One putatively easy technological remedy is to consider electronic tagging. This possibility, however, raises a dif erent set of ethical concerns. In this paper we report the results of a survey that was intended to elicit people’s views about the ethical issues surrounding the topic of tagging in dementia. There was broad agreement in response to the scenario used in the survey that electronic tagging could (...) be an ethically reasonable way to deal with wandering in people who are confused. It was seen as considerably better than locking doors as a way to maintain a person’s safety. There were, however, concerns and uncertainties about principles relating to civil liberties, stigma and dignity. And there appeared to be some weight behind the view that electronic tagging of confused people who wander requires professional involvement, the nature of which would need to be decided. population in general. (shrink)

Little has been published about the drivers, factors and challenges involved in the business practice of creating corporate sustainability performance within a company. This working paper describes research that employed an in-depth, grounded-theory case study approach to explore the issue within two EU-based utility companies. From the analysis of interviews, project meeting observations and a survey with in-house delivery experts, a key preliminary output of this research has been the creation of a Force-Factor Corporate Sustainability Performance Framework that categorises the (...) main driver and inhibitor elements a dynamic, explanatory model. This can serve as a useful platform for further academic and practitioner-based research, as well as describing key levers and obstacles to establishing a progressive performance in corporate sustainability. (shrink)