Volume 25, Issue 2, February 2025, Page 157-159.

As the number of people affected by dementia increases rapidly, dementia has been transformed into an epidemic which endangers global health and wealth, and many populations are now living in what Jain terms a time of prognosis, in fear of the disease. Through its strong association with ageing and memory loss, dementia is conceived of as a linear decline into loss of self and death, and those with dementia as other. More significantly, imagined as a threat (...) that signifies both a loss of able-bodied workforce and a large population dependent on care and support, dementia inevitably feeds into the ‘crisis-of-care’ narrative that is prominent in many ageing societies. With one of the fastest ageing populations in the world, and an extremely low birth rate, the dementia prognosis is particularly acute in Japan and dementia is strongly linked to the idea of a ‘care crisis’. This situation has produced an increasing number of cultural representations of dementia and care and this paper considers three of these cultural texts, all rooted in the historical and cultural contexts in which they were produced: the novel The Twilight Years; the film Memories of Tomorrow; and the comic book Pecoross’ Mother and Her Days. The analysis concentrates upon their representations of care, seeing this as a space where the ethical relationship between self and other can be negotiated and where time with dementia can be imagined and re-imagined. The analysis of these texts from a feminist ethics perspective demonstrates the potential of popular and creative representations to interrogate and potentially expand the meanings of dementia, ageing and living in prognosis. (shrink)

Background: A total of 71,000 people in Norway suffer from some form of dementia in 2013, of whom approximately 30,000 are in nursing homes. Several studies focus on the experiences of those who have close relatives and who are staying in a nursing home. Results show that a greater focus on cooperation between nursing staff and relatives is a central prerequisite for an increased level of care. Benefits of developing systematic collaboration practices include relief for nursing staff, less (...) stress, and greater mutual understanding. Going through studies focusing on the experiences of nursing home patients’ relatives, negative experiences are in the majority. In this study, relatives are invited to share positive experiences regarding the care of their loved ones; a slightly different perspective, in other words. Aim: The aim of the study is to investigate relatives of persons with dementia’s experiences with quality care in nursing homes. Method: The study is a part of a larger project called Hospice values in the care for persons with dementia and is based on a qualitative design where data are generated through narrative interviews. The chosen method of analysis is the phenomenological–hermeneutical method for the study of lived experiences. Participants and research context: Participants in the project were eight relatives of persons with dementia who were living in nursing homes, long-term residences. The sampling was targeted, enrolment happened through collective invitation. All relatives interested were included. Ethical considerations: The Norwegian Regional Ethics Committee and the Norwegian Social Science Data Services approve the study. Findings: Findings show that relatives have certain expectations as to how their loved ones ought to be met and looked after at the nursing home. The results show that in those cases where the expectations were met, the relatives’ experiences were associated with engagement, inclusion and a good atmosphere. When the expectations were not met, the relatives experienced powerlessness, distrust and guilt. Discussion: The results are discussed considering the concepts of trust, power and asymmetry. Conclusion: When asked about experiences with quality care, the relatives spoke both of expectations met and of expectations not met. Results in this study are important knowledge for developing units where performing quality care is the overall aim. (shrink)

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

Specifying the moral demands of respect for the autonomy of people with dementia (PWD) in nursing homes (NHs) remains a challenging conceptual task. These challenges arise primarily because received notions of autonomous decision-making and informed consent do not straightforwardly apply to PWD in NHs. In this paper, I investigate whether, and to what extent, the influential account of autonomous decision-making and informed consent proposed by Beauchamp and Childress has applicability and relevance to PWD in NHs. Despite its otherwise practical (...) orientation and suitability for acute care settings, I identify three problems with this account when applied to PWD in NHs. These problems include (1) intentionality as an all-or-nothing condition of autonomous decision-making, (2) construing consent as one-off authorization, and (3) unresolved ambiguities around the primacy of precedent autonomy over best interest considerations. To address these problems, I propose and defend a number of revisions to Beauchamp and Childress’s account. First, I suggest that we consider intentionality as a non-binary criterion of autonomous decision-making. Second, I argue for a model of process consent to overcome the moral inadequacy of construing consent as one-off authorization in NHs. And, to overcome the third problem, I suggest accounting for both precedent and extant autonomy of PWD, considering mandates of precedent autonomy not as prescriptive but as informative, and drawing a less rigid distinction between autonomy considerations and best interest judgements. I conclude that this revised version of Beauchamp and Childress’s account fares better than the original version in capturing relevant autonomy considerations to care for PWD in NHs. (shrink)

Long term care (LTC) facilities are fraught with unique ethical challenges. Unlike in the acute care setting, where patients are admitted for a temporary period and then discharged to the next leve...

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)

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)

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)

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)

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

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)

Background: Dementia care at home often involves decisions in which the caregiver must weigh safety concerns with respect for autonomy. These dilemmas can lead to situations where caregivers provide care against the will of persons living with dementia, referred to as involuntary treatment. To prevent this, insight is needed into how family caregivers of persons living with dementia deal with care situations that can lead to involuntary treatment. Objective: To identify and describe family caregivers’ (...) experiences regarding care decisions for situations that can lead to involuntary treatment use in persons living with dementia at home. Research design: A qualitative descriptive interview design. Data were analysed using the Qualitative Analysis Guide of Leuven. Participants and research context: A total of 10 family caregivers providing care for 13 persons living with dementia participated in in-depth semi-structured interviews. Participants were recruited by registered nurses via purposive sampling. Ethical consideration: The study protocol was approved by the Ethics Committee of the University Hospitals Leuven and the Medical Ethical Test Committee Zuyderland. Findings: Family caregivers experience the decision-making process concerning care dilemmas that can lead to involuntary treatment as complicated, stressful and exhausting. Although they consider safety and autonomy as important values, they struggle with finding the right balance between them. Due to the progressive and unpredictable nature of dementia, they are constantly seeking solutions while they adapt to new situations. Family caregivers feel responsible and experience social pressure for the safety of persons living with dementia. They may be blamed if something adverse happens to the persons living with dementia, which increases an already stressful situation. Their experience is influenced by characteristics of the care triad (persons living with dementia, professional and family caregivers) such as practical and emotional support, knowledge, and previous experiences. Discussion and conclusion: To prevent involuntary treatment, professionals need to proactively inform family caregivers, and they need to support each other in dealing with complex care situations. (shrink)

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)

Background: If collectivistic-oriented family carers choose professional care for dependents with dementia, they risk being stigmatised as failing their obligation. This may influence dementia care choices. Research question: How may individualistic and collectivistic values influence choices in dementia care? Method: Qualitative design with in-depth interviews with a total of 29 nurses, 13 family members in Norway and the Balkans and 3 Norwegian dementia care coordinators. A hermeneutic content-focused analysis was used. Ethical considerations: (...) Ethical approval was obtained from the Regional Ethics Committee for Research, South-Eastern Norway, and the nursing homes’ leadership. Findings: Family domain reasons why institutionalisation of dependents with dementia was seen as a last resort: obligation towards family members, particularly parents; worry about other family members’ reactions and inability to cope with the care for the person with dementia. Social domain reasons: feelings of shame and stigma regarding dementia, particularly in connection with institutionalisation of family members. Discussion: Children’s obligation towards their parents is an important aspect of the morality of collectivistic societies. Institutionalising parents with dementia may cause feelings of guilt and shame and worry about being stigmatised and ostracised. To avoid blame and rejection, caregiver(s) try to keep the fact that family members have dementia ‘in the family’. The decision to accept professional healthcare for dependents with severe dementia or have them admitted to a geriatric institution was postponed as long as possible. Conclusion: Family care morality may constitute a significant barrier against seeking professional help for persons with dementia, a barrier based on the expectation that the family will care for their old, even when suffering from severe dementia. Hence, stigma and shame may significantly affect the provision of care. Culturally tailored information may encourage family carers to seek professional help before the disruptive influence of the disease makes institutionalisation the only feasible option. (shrink)

According to Bayertz the core meaning of solidarity is the perception of mutual obligations between the members of a community. This definition leaves open the various ways solidarity is perceived by individuals in different communities and how it manifests itself in a particular community. This paper explores solidarity as manifested in the context of families in respect of caregiving for a family member who has become dependent because of disease or illness. Though family caregiving is based on the same perception (...) of mutual obligation as the solidarity that supports welfare arrangements in society, the manifestation of solidarity in families is different. Solidarity that underpins welfare arrangements is based on a perception of mutual obligation towards an anonymous dependent other and is enforced by the government. Solidarity in families is directed towards a concrete other and is based on free choice, albeit often accompanied by a strong sense of personal duty. In this paper we try to distinguish between solidarity as a sociological concept and as a moral concept. An important moral element of solidarity, as expressed in families, is the need for recognition of family caregivers, not only of their concrete practical efforts, but also of their own identity as caregivers and as individuals. We illustrate this argument by referring to examples in the Nuffield Council on Bioethics report Dementia : ethical issues, about the experiences of family caregivers in dementia care and the importance for them of recognition of their role. (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)

Intimacy and sexuality expressed by nursing home residents with dementia remains an ethically sensitive issue for care facilities, nursing staff and family members. Dealing with residents’ sexual longings and behaviour is extremely difficult, putting a burden on the caregivers as well as on the residents themselves and their relatives. The parties in question often do not know how to react when residents express themselves sexually. The overall aim of this article is to provide a number of clinical-ethical considerations (...) addressing the following question: ‘How can expressions of intimacy and sexuality by residents with dementia be dealt with in an ethically responsible way?’ The considerations formulated are based on two cornerstones: the current literature on older peoples’ experiences regarding intimacy and sexuality after the onset of dementia, and an anthropological-ethical framework addressing four fundamental pillars of human existence namely the decentred self, human embodiment, being-in-the-world and being-with-others. The resulting considerations are oriented toward the individual sphere, the partnership sphere, and the institutional sphere. The continuous interaction between these spheres leads to orientations that both empower the residents in question and respect the complex network of relationships that surrounds them. (shrink)

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

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: Advance care planning gives patients and their family members the possibility to consider and make decisions regarding future care and medical procedures. Aim: To explore the view of people in the early stage of dementia on planning for future care. Research design: The study is a qualitative interview study with a semistructured interview guide. The data were analyzed according to the Qualitative Analysis Guide of Leuven. Participants and research context: Dementia nurses assisted in the (...) recruiting of people with dementia for participation in the study. Study information was mailed to 95 people with early stage dementia. Ten people with dementia and eight caregiver spouses participated in the study. Ethical considerations: People with dementia belong to a vulnerable patient group, and care was taken in the areas of informed consent and accessible information. Findings: The views of people with dementia are characterized by a complex storyline involving tensions and movement within the themes of wants, beliefs, and levels of insight. Participants wanted to think about the future but also wanted to live in the here and now. Discussion: High demands are placed on the advance care planning process for people with dementia and their family caregivers. A dignity-enhancing approach in dementia care emphasizes the dignity of and respect for this vulnerable and care-dependent patient group. Conclusion: The process of advance care planning in dementia care needs to go beyond person-centered care to a relationship-centered process. The illness trajectory and the impact on autonomy need to be taken into consideration. (shrink)

Research indicates the essentiality of dignity as a vital component for quality of life, reconfirming the emphasis on dignity preservation in the international code of nursing ethics. Applying Noblit and Hare’s meta-ethnography, the aim of the study was to develop a theory model by synthesizing 10 qualitative articles from various cultural contexts, exploring nurse and allied healthcare professional perception/practice concerning dignity-preserving dementia care. “Advocating the person’s autonomy and integrity,” which involves “having compassion for the person,” “confirming the (...) person’s worthiness and sense of self,” and “creating a humane and purposeful environment,” was identified as a primary foundation for dignity-preserving dementia care. “Balancing individual choices among persons no longer able to make sound decisions, against the duty of making choices on behalf of the person,” which involves “persuasion” and/or “mild restraint,” was considered a crucial aspect in certain situations. “Sheltering human worth—remembering those who forget” was identified as a comprehensive motive and core value within dignity-preserving dementia care. (shrink)

There are opportunities in practice for practitioners to sustain the citizenship of the people with whom they work. These opportunities arise as a matter of everyday decision-making, in the ways that service users and their families are facilitated to participate in decisions affecting their lives. Citizenship also hinges on the organisation of services to meet the needs of service users and carers. In this article, a care situation which fails to meet the needs of one family is examined using (...) an ethics of care. A social worker reflects on her role in the decision-making and the eventual lack of commitment from a wider team to provide good care. To answer yes to the question of whether others matter, we need to consider whether the moral acheivement has been accomplished; that is to show in practice, that others do matter. (shrink)

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

Monitoring and assistive technologies (MATs) are being used more frequently in healthcare. A central ethical concern is the compatibility of these systems with the moral preferences of their users—an issue especially relevant to participatory approaches within the ethics-by-design debate. However, users’ incapacity to communicate preferences or to participate in design processes, e.g., due to dementia, presents a hurdle for participatory ethics-by-design approaches. In this paper, we explore the question of how the value preferences of users in the (...) field of dementia care can be integrated into AI-based MATs. First, we briefly introduce different ethics-by-design approaches and explain the challenges they face in dementia care. Next, we introduce a novel approach for addressing these challenges. Through a qualitative content analysis of interviews with persons with dementia and their family caregivers (n = 27), we identified multiple ideal–typical value preference profiles. We then applied these profiles in a computer simulation, by which we also introduce the concept of ethical compliance quantification to scale the moral preferences of the interviewees for the simulation. Finally, we discuss study results, the advantages of using computer simulations, and general study limitations before drawing conclusions for further research. The study contributes to the ongoing debate on participatory ethics-by-design by defining on the basis of empirical data ideal–typical value preference frameworks that can be used to guide MAT actions and their outcomes. Going forward, MAT end-users with dementia and other communication-impaired persons could be enabled to choose a value profile that best fits their moral preferences. (shrink)

This is a case study of an ethical dilemma concerning the appropriateness of encouraging care-staff, working within a dementia care home, to either wear a clinical uniform or not to wear a clinical uniform in practice. It is proposed that people living with dementia may sustain higher levels of wellbeing if care-staff wear clothes that are more akin to their care home environment, for example, wearing similar clothes to the residents or even wearing pyjamas (...) and nightwear during a night shift. The counter argument is that the practice may lead to greater levels of distress due to disorientation, increased potential for infection and inability to identify nurses when needed. (shrink)

The long-running discourse on respect for human dignity and autonomy in the physician-patient relationship pertaining to persons with dementia (PwDs) is explored deeply in this paper through the use of a real-life case, to highlight the complex interplay between autonomy and best interest when it comes to a PwD's experiential and critical interests. Many scenarios and perspectives are described and applies to the case. However, there are a few perspectives, which are touched upon that could do with further scrutiny. (...) Firstly, it has been argued that rigid adherence to the advance directives of PwDs means that PwDs will be the only people who are not allowed to ever change their minds. This withdrawal of a fundamental freedom hardly accords with respect for human dignity, or for any residual autonomy that these individuals may still enjoy. Secondly, viewing this case through the lens of care ethics, and incorporating the recently proposed conceptual framework of anthropological vulnerability, may reveal valuable insights regarding care provision and caring physician-patient relationships. These perspectives would analyse the role of relational ontology, particularly in relation to significant others, significant communities, and caregivers. (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)

BackgroundDementia care is essential to promote the well-being of patients but remains a difficult task prone to ethical issues. These issues include questions like whether manipulating a person with dementia is ethically permissible if it promotes her best interest or how to engage with a person who is unwilling to recognize that she has dementia. To help people living with dementia and their carers manage ethical issues in dementia care, we developed the CARE (...) intervention. This is an intervention focused on promoting the ethical self-efficacy of people living with dementia and carers, i.e., their confidence that they can manage ethical issues when they occur. The purpose of this paper is to explain and discuss how we have developed the CARE intervention to promote the ethical self-efficacy of people living with dementia, their family, and professional carers through a specific and, we believe, new use of literary texts.MethodsThe CARE intervention has been developed in two phases: First, we conducted a needs assessment of the occurrence of ethical issues in dementia care and the need for an intervention to support people living with dementia and their carers in managing such issues. Second, in a design phase, we developed the CARE intervention to meet identified needs.ResultsTo address identified ethical issues in dementia care we designed the CARE intervention as a workshop format where people living with dementia and carers can meet, discuss literary texts, and deliberate on how to solve such issues. The workshop is structured by the following elements: An agenda of ethical issues, a collection of literary cases exemplifying ethical issues, a moderator with an understanding of dementia care, and an overview of the ethical principles relevant to the discussion of ethical issues. >This workshop concept is operationalized in three applications tailored to meet the specific ethical issues of each of the study´s three target groups: people living with dementia and family carers, professional and family carers, and professional carers.ConclusionWe conclude the paper by stating that it is possible to develop an intervention that promotes the ethical self-efficacy of people living with dementia and family and professional carers. (shrink)

Advance care planning (ACP) is considered a pivotal aid in the decision‐making process, especially for many people living with dementia, who inevitably will lose the capacity to make decisions at the end of life. In Italy, ACP has been recently regulated by law 219/2017, leading to the investigation of how physicians deal with ACP in dementia. In order to comprehend the perception of physicians who provide care for patients with dementia regarding ACP and to describe (...) their difficulties and needs, this study presents the results of a qualitative research study performed within a local health authority in northern Italy. Data were collected by semi‐structured interviews with 11 physicians dealing with patients with dementia and were analysed using interpretative phenomenological analysis. Four superordinate themes were identified, describing both the difficulties and challenges perceived by physicians in performing shared ACP in their daily activities. This study demonstrates that physicians experience troubles synchronizing the time of shared ACP with the more rapid development of dementia. Results also suggest that further training about communication on ACP is urgently required to ease the implementation of shared ACP. A broader involvement of institutions and other professionals is also important in spreading ACP among healthcare institutions. (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)

When a person with dementia (PwD) makes a specific request or behaves in a particular way that is inappropriate or dangerous and based on a false understanding of reality, there is a particular technique that caregivers may use to try and manage the situation. The technique is known as ‘diversion’ and it works by affirming the false beliefs and behaviour of a PwD and creating the false impression that their specific request will be fulfilled. It may take the form (...) of an explicit lie or any other communicative response or provision of care that either explicitly or tacitly affirms their false beliefs. It therefore raises the same kind of ethical issues as when lying (or not telling the truth) is done for so called ‘therapeutic’ purposes. The main type of argument used to justify this so called ‘therapeutic lying’ is that it is primarily aimed at benefiting the patient rather than the liar. The same kind of argument can be made for diversion, which is that it is primarily aimed at benefiting the PwD by aiming to ensure their safety and well-being. I argue that insofar as diversion is practiced in this way, it is consistent with the idea of ‘person-centred care’ (PCC) and can be ethically justified on those grounds. Therefore, however, we must be wary of situations where diversion is not practiced in this way, where it is primarily aimed at benefiting caregivers or care providers, and thus inconsistent with PCC. (shrink)

Hojjat Soofi successfully developed a novel dementia-specific model of human flourishing.1 Based on a modified version of Nussbaum’s account of dignity (ie, the theoretical framework of the capabilities approach), and integrated with Kitwood and Bredin’s empirically informed list of indicators of well-being for people with dementia (ie, the field of empirically informed ethics), this model provides guidance on how to actually care for people with dementia in real-life practices, according to the moral requirements of respect (...) for dignity. More specifically, we deem the contributive value of the model to be threefold. (1) It is a successful specification and contextualisation of Nussbaum’s original list of capabilities in the context of dementia care. (2) The table clearly distinguishes between dementia-specific capabilities and their possibly dementia-related progressive deprivation (ie, the internal conditions), and the possible external setbacks or facilitators for human flourishing. (3) The model is proposed as being open to include new and additional insights from further empirical research on what forms of caregiving do (or do not) align with respect for the dignity of people with dementia. In our commentary, we want to focus on the source of dignity, that is, the locus and starting point of our moral requirements on which the author takes an explicit stance. First of all, by being founded on the list of dementia-specific capabilities, Soofi’s model places the source of our moral requirements of respect for the dignity of people with dementia within the persons themselves, ‘having some of the basis capabilities listed’ (p.6). This, in turn, brings classic discussions concerning a …. (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)

In Ending Midlife Bias: New Values for Old Age, I argued that dignity can give practical guidance for patient care, especially dementia care.1 Using a capability-informed analysis, I detailed threats to central human capabilities that undermine dignity for people with dementia and provide practical suggestions for managing these threats in paradigm cases. In an article in this issue, Hojjat Soofi argues that a capability-informed account of dignity is exclusionary of people with dementia and does not (...) translate into practical ethics guidance.2 Soofi maintains that people with intellectual impairment ‘might not be able to exercise (or even have access to)’ the capabilities in question (Soofi, p4).2 Focusing on Nussbaum’s capability view, Soofi cautions, it gives a narrow, blinkered assessment of what it means to live a full and flourishing human life. In this commentary, I argue that Soofi’s critique of the capability view hastily generalises from a narrow set of premises to expansive, unwarranted conclusions. Soofi’s first objection, that a capability view of dignity excludes people with dementia, is a sweeping and strong claim. In its support, Soofi cites dignity of the Kantian sort, which requires ‘cognitive competence to exercise rational agency,’ to argue that ‘if we want to include people with dementia in the circle of human beings …. (shrink)

This paper explores the use of advance directives in clinical dementia research. The focus is on advance consent to participation of demented patients in non-therapeutic research involving more than minimal risks and/or burdens. First, morally relevant differences between advance directives for treatment and care, and advance directives for dementia research are discussed. Then attention is paid to the philosophical issue of dementia and personal identity, and the implications for the moral authority of research advance directives. Thirdly, (...) a number of practical shortcomings of advance directives for non-therapeutic dementia research are explored and attention is paid to the role of proxies. It is concluded that upon a closer look the initial attractiveness of advance directives for dementia research is lessened, and that it is doubtful whether these instruments can compensate for the lack of subject consent in case of non-therapeutic dementia research involving more than minimal risks and/or burdens for the incompetent demented subject. (shrink)

Menschen mit Migrationshintergrund kommen im Zuge des demografischen Wandels zunehmend in ein Alter, in dem die Wahrscheinlichkeit, pflegebedürftig zu werden, steigt. Insbesondere Demenzerkrankungen in vorangeschrittenen Stadien führen zu hochgradiger Pflegebedürftigkeit, die eine ausschließlich häusliche Pflege durch Angehörige erschwert. Aktuellen Untersuchungen zufolge werden Pflegebedürftige mit Migrationshintergrund jedoch zumeist zu Hause ausschließlich durch Familienangehörige gepflegt und es werden nahezu keine ambulanten Hilfen in Anspruch genommen. Die geringe Inanspruchnahme von ambulanten und stationären Angeboten ist zurückzuführen auf unzureichende Information und die vom Pflegesystem unzureichende (...) Berücksichtigung der Pflegesituation und -bedürfnisse dieser heterogenen Bevölkerungsgruppe. Auch das Verständnis der Demenzerkrankung ist in unterschiedlichen Kulturen heterogen. So wird die Krankheit häufig nicht als solche akzeptiert, sondern die Symptome als „gewöhnliche“ Alterserscheinungen interpretiert, wodurch die Inanspruchnahme ärztlicher Versorgung erst spät erfolgt. Diese Faktoren führen im medizinischen und pflegerischen Alltag häufig zu ethischen Konflikten zwischen pflegenden Angehörigen und Professionellen, aber auch innerhalb des familiären Kontextes. Der Artikel stellt, ausgehend von zentralen Ergebnissen einer empirischen Studie, ethische Konflikte bei der Versorgung demenzerkrankter türkeistämmiger Menschen in Deutschland anhand von zwei Fallbeschreibungen dar. Die ethischen Herausforderungen an das ärztliche und pflegerische Handeln im stationären und häuslichen Setting bei demenzerkrankten Menschen mit Migrationshintergrund werden erörtert. Es wird der Frage nachgegangen, inwieweit diese Konflikte auf unterschiedlichen Ebenen „kulturalisiert“ werden und welche Implikationen sich für die Medizin- und Pflegeethik ergeben. (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)

Care workers and families often engage in deception in everyday interactions with people affected by dementia. While benevolent deception can be justified, there are often more respectful and less risky ways to help people with dementia seeking to make sense of their lives.

Background: Nursing workforce in Western European health institutions has become more diverse because of immigration and recruitment from Asian, African, and East-European countries. Minority healthcare providers may experience communication problems in interaction with patients and coworkers, and they are likely to experience conflict or uncertainty when confronted with different cultural traditions and values. Persons with dementia are a vulnerable group, and the consequences of their illness challenge the ability to understand and express oneself verbally. The large number of minority (...) healthcare providers in nursing homes underlines the importance to obtain better knowledge about this group’s experiences with the care challenges in dementia care units. Research question: Can you tell about any challenges in the experiences in the encounter with persons suffering from dementia? Participants and research context: Five minority healthcare providers in a nursing home, in a dementia unit. All guidelines for research ethic were followed. Ethical consideration: The participants were informed that participation was voluntary, and they were guarantied anonymity. Method: We used a qualitative method, conducting individual interviews, using a narrative approach. In the analysis, we applied a phenomenological–hermeneutical method, developed for researching life experiences. Findings: One theme and four subthemes: striving to understand the quality of care for persons with dementia. The subthemes: sensitivity to understand the patients’ verbal and nonverbal expressions. To understand gratefulness, understand the patient as an adult and autonomous person, and understand the patient as a patient in a nursing home. Challenges comprise both ethical and cultural striving to understand persons with dementia. Conclusion: To care for persons with dementia in an unfamiliar context may be understood as a striving for acting ethically, when at the same time striving to adapt and acculturate to new cultural norms, in order to practice good dementia care. (shrink)

Dance, as aesthetic self-expression, is a unique arts-based program that combines the physical benefits of exercise with psychosocial therapeutic benefits. While dance has also been shown to support empowerment, meaningful self-expression, and pleasurable experience, it is rarely adopted to support these aspects of engagement in the context of dementia care. The instrumental reduction of dance to its application as a therapeutic tool can be traced to the contemporary movement towards cognitive science with an emphasis on embodied cognition. This (...) has effectively elided a consideration of how the body itself, separate and apart from cognition, could be a source of intelligibility, inventiveness, and creativity. We argue for the need to broaden the therapeutic model of dance to more fully support embodied and creative self-expression by persons living with dementia. To achieve this, we explore how a relational model of citizenship that recognizes corporeality and relationality as fundamental to human existence brings a new and critical dimension to understanding the importance of dance in the context of dementia. Drawing on this model, we articulate a new kind of ethic characterized by a pre-reflective intercorporeal sensibility that requires the mobilization of public structures and practices to cultivate a relational environment for individuals living with dementia that supports human flourishing. (shrink)