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)

This article provides an understanding and defence of ‘best interests’. The analysis is performed in the context of, and is informed by, English law. The understanding that develops allows for differences in values, and is thus argued to be appropriate in a pluralist liberal system. When understood properly, it is argued, best interests provides the best means of decision-making for people deemed incompetent to decide for themselves. It is accepted that some commentators are cynical of best interests in practice. Following (...) an assessment of some of their principal concerns, it is suggested that best interests in fact provides a construct that is both defensible and desirable. (shrink)

Background The worldwide increase in older persons demands technological solutions to combat the shortage of caregiving and to enable aging in place. Smart home health technologies (SHHTs) are promoted and implemented as a possible solution from an economic and practical perspective. However, ethical considerations are equally important and need to be investigated. Methods We conducted a systematic review according to the PRISMA guidelines to investigate if and how ethical questions are discussed in the field of SHHTs in caregiving for older (...) persons. Results 156 peer-reviewed articles published in English, German and French were retrieved and analyzed across 10 electronic databases. Using narrative analysis, 7 ethical categories were mapped: privacy, autonomy, responsibility, human vs. artificial interactions, trust, ageism and stigma, and other concerns. Conclusion The findings of our systematic review show the (lack of) ethical consideration when it comes to the development and implementation of SHHTs for older persons. Our analysis is useful to promote careful ethical consideration when carrying out technology development, research and deployment to care for older persons. Registration We registered our systematic review in the PROSPERO network under CRD42021248543. (shrink)

Dementia is highly prevalent and incurable. The participation of dementia patients in clinical research is indispensable if we want to find an effective treatment for dementia. However, one of the primary challenges in dementia research is the patients’ gradual loss of the capacity to consent. Patients with dementia are characterized by the fact that, at an earlier stage of their life, they were able to give their consent to participation in research. Therefore, the phase when patients are still competent to (...) decide offers a valuable opportunity to authorize research, by using an advance research directive. Yet, the use of ARDs as an authorization for research participation remains controversial. In this paper we discuss the role of autonomous decision-making and the protection of incompetent research subjects. We will show why ARDs are a morally defensible basis for the inclusion of this population in biomedical research and that the use of ARDs is compatible with the protection of incompetent research subjects. (shrink)

Viele Menschen halten Patientenverfügungen für ein geeignetes Mittel, um selbstbestimmt zu entscheiden, wie mit ihnen im Fall schwerer Demenz umgegangen werden soll. Die meisten Bioethiker stimmen ihnen zu: Demenzverfügungen seien Ausdruck der „verlängerten Autonomie“ der Patientin. Doch ob sie recht haben, ist unklar. Dem viel beachteten Identitätseinwand zufolge sind die Ausstellerin der Verfügung und ihre schwer demente Nachfolgerin numerisch verschieden: Sie sind zwei und nicht eins. Wenn das stimmt, kann die Ausstellerin nicht verfügen, wie mit ihr im Falle schwerer Demenz (...) umgegangen werden soll. Die Demenzverfügung ist ungültig. In meinem Aufsatz möchte ich eine neue Replik auf diesen Einwand vorstellen. Ihr Ansatzpunkt ist der menschliche Organismus, den wir sehen, wenn wir in den Spiegel blicken. Er kann schwer dement werden, und auch er hat die Patientenverfügung unterschrieben. Warum sollte sie dann ungültig sein? Auf den ersten Blick hat diese Replik eine Reihe von Vorzügen. Insbesondere akzeptiert sie die populären Annahmen, auf denen der Identitätseinwand basiert. Bei näherem Hinsehen zeigen sich jedoch Probleme, die so gravierend sind, dass wir von ihr Abstand nehmen sollten. (shrink)

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

In this paper, we build upon the model of authenticity proposed by Lehman and colleagues, which includes the dimensions consistency, conformity, and connection. We expand this “3C-view” by adding a fourth dimension, continuity, which results in what we have come to call “4C-view of authenticity.” We discuss our proposal from a process perspective and emphasize that congruence might be a reasonable candidate for a concept that unifies the four dimensions of authenticity.

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)

ZusammenfassungAusgehend von den Positionen Ronald Dworkins, Rebecca Dressers und Agnieszka Jaworskas untersucht der Beitrag das Spannungsverhältnis zwischen vorgängigem und aktualem Selbstbestimmungsrecht demenzkranker Patienten und verbindet die Diskussion über das Autonomiepotential der Betroffenen mit einer Theorie praktischer Selbstverhältnisse, die die Patienten zumindest in den Anfangs- und den mittleren Stadien der Krankheit aufrechterhalten können. Theoretisches Grundgerüst für die Auseinandersetzung mit den Möglichkeiten und Grenzen der Patientenautonomie Demenzkranker ist dabei zunächst die Opposition zwischen Äquivalenz- und Nichtäquivalenztheorien der Personalität, in die sich auch die (...) divergierenden Positionen von Dworkin und Dresser einordnen lassen. Durch Einbeziehung des Ansatzes von Jaworska, die Demenzbetroffenen eine sogenannte capacity to value zuschreibt, versucht der Beitrag zu zeigen, dass strikte Äquivalenz- oder Nichtäquivalenztheorien der Personalität, die wiederum für ein umfassendes oder stark limitiertes Verständnis der Patientenautonomie Demenzkranker argumentieren, zu kurz greifen. Im Anschluss an die von Jaworska herausgestellte Fähigkeit der Betroffenen, Wertungen und Wertschätzungen vorzunehmen, kann stattdessen ein Verständnis der Personalität Demenzkranker erarbeitet werden, das mit geringeren Rationalitätsannahmen operiert als strikte Nichtäquivalenztheorien und das auch die Bedingungen für die Ausübung von Patientenautonomie weiter fasst, ohne vollständig in einer Konzeption relationaler Autonomie aufzugehen. Darüber hinaus ermöglicht dieser Ansatz, erste Grundzüge einer Theorie praktischer Selbstverhältnisse bei Demenzbetroffenen zu skizzieren. (shrink)

:Something strange has happened to the concept of dignity in bioethics. After a long period in which U.S. pragmatist and U.K. consequentialist philosophers have argued that the concept is useless and vacuous, and in which they have been reasonably successful in expunging it from mainstream English-language academic bioethics, dignity has suddenly become popular again in debates about the legalization of physician-assisted dying. And, even stranger, it is deployed not by conservatives but by liberals. In the debates about PAD, liberal proponents (...) of legalization seem to accept without question that there is such a state or process as “death with dignity,” which is juxtaposed to “undignified dying.” It also seems to be accepted that both of these states can be fairly easily identified and that they carry great moral weight. This article provides an analysis of the current resurgence of “undignified” arguments and argues on the basis of that analysis that a proper understanding of the concept of dignity shows that the previous reductive arguments against dignity are partially incomplete and therefore partially misguided and that, despite dignity having meaning, the idea of an undignified death cannot carry the moral weight it is given by proponents of the legalization of PAD. (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)

With robots being introduced into caregiving, particularly for older persons, various ethical concerns are raised. Among them is the fear of replacing human caregiving. While ethical concepts like well-being, autonomy, and capabilities are often used to discuss these concerns, this paper brings forth the concept of social dignity to further develop guidelines concerning the use of robots in caregiving. By social dignity, we mean that a person’s perceived dignity changes in response to certain interactions and experiences with other persons. In (...) this paper, we will first present the concept of social dignity, and then identify a niche where robots can be used in caregiving in an ethical manner. Specifically, we will argue that, because some activities of daily living are performed in solitude to maintain dignity, a care recipient will usually prefer robotic assistance instead of human assistance for these activities. Secondly, we will describe how other philosophical concepts, which have been commonly used to judge robotic assistance in caregiving for the elderly so far, such as well-being, autonomy, and capabilities, are less useful in determining whether robotic assistance in caregiving is ethically problematic or not. To conclude, we will argue that social dignity offers an advantage to the other concepts, as it allows to ask the most pressing questions in caregiving. (shrink)

Should advance directives (ADs) such as living wills be employed to direct the care of the severely demented? In considering this question, I focus primarily on the claims of Rebecca Dresser who objects in principle to the use of ADs in this context. Dresser has persuasively argued that ADs are both theoretically incoherent and ethically dangerous. She proceeds to advocate a Best Interest Standard as the best way for deciding when and how the demented ought to be treated. I put (...) forth a compromise position: both ADs and the Best Interest Standard have roles to play in guiding the care of the severely demented. (shrink)

The aim of this paper is to analyse the ethical issues relating to privacy that arise in smart homes designed for people with dementia and for people with intellectual disabilities. We outline five different conceptual perspectives on privacy and detail the ways in which smart home technologies may violate residents’ privacy. We specify these privacy threats in a number of areas and under a variety of conceptions of privacy. Furthermore, we illustrate that informed consent may not provide a solution to (...) this problem. We offer a number of recommendations that designers of smart homes for people with dementia and people with intellectual disabilities might follow to ensure the privacy of potential residents. (shrink)

ZusammenfassungDie bei Krebserkrankungen junger Frauen erforderliche Chemo- bzw. Strahlentherapie kann in der Folge bei den betroffenen Patientinnen zur Unfruchtbarkeit führen. Somit werden die Betroffenen oft gleichzeitig mit einer potentiell lebensbedrohlichen Erkrankung und einem potentiell kinderlosen Leben konfrontiert. Die derzeitigen Methoden zum Erhalt der Fertilität sind experimentell, mit therapeutischer Unsicherheit und gesundheitlichen Risiken belastet, dennoch werden sie zunehmend nachgefragt. Die mit dem Angebot fertilitätserhaltender Maßnahmen verbundene derzeitige Beratungspraxis wird in dem hier vorliegenden Beitrag aus ethischer Perspektive hinterfragt. Ausgehend von einer kritischen (...) Würdigung des nach wie vor häufig angewandten Autonomiekonzepts von Beauchamp und Childress wird diskutiert, auf welche Weise die normative Belastbarkeit der Entscheidungsfindung durch die Vulnerabilität der Patientin limitiert sein kann. Als Alternative zum Autonomiekonzept von Beauchamp und Childress wird anschließend eine Entscheidungsfindung auf der Grundlage biographischer Identität in Anlehnung an das Konzept der personalen Autonomie nach Quante erörtert. (shrink)

Patient’s decision making competence is a widely discussed subject. Issues of competence, autonomy, well-being and protection of the patient come up every day. In this article we analyse what role PDMC plays in Dutch legislation and what dilemmas healthcare professionals may experience, notably in patients suffering from Korsakoff’s syndrome. Dilemmas emerge if professionals want to meet the requirements mentioned in Dutch law and the desires of their patients. The autonomy of the patient and the healthcare professionals’ duty to take care (...) of their patient’s best interests, create a tension and lead to uncomfortable situations. Healthcare professionals describe difficulty finding a balance between these issues and assessing the degree of mental competence still present. In long term care situations, quality of the relationship between healthcare professionals and their patients seems to be of much more importance in decision making on minor issues of competence than simply relying on legal or house rules. In being committed to their cases, professionals will be more sensitive to individuals habits, abilities, welfare and dignity, which will make it easier to decide on issues of competence, and to find creative solutions to their dilemmas. (shrink)

Die bei Krebserkrankungen junger Frauen erforderliche Chemo- bzw. Strahlentherapie kann in der Folge bei den betroffenen Patientinnen zur Unfruchtbarkeit führen. Somit werden die Betroffenen oft gleichzeitig mit einer potentiell lebensbedrohlichen Erkrankung und einem potentiell kinderlosen Leben konfrontiert. Die derzeitigen Methoden zum Erhalt der Fertilität sind experimentell, mit therapeutischer Unsicherheit und gesundheitlichen Risiken belastet, dennoch werden sie zunehmend nachgefragt. Die mit dem Angebot fertilitätserhaltender Maßnahmen verbundene derzeitige Beratungspraxis wird in dem hier vorliegenden Beitrag aus ethischer Perspektive hinterfragt. Ausgehend von einer kritischen (...) Würdigung des nach wie vor häufig angewandten Autonomiekonzepts von Beauchamp und Childress wird diskutiert, auf welche Weise die normative Belastbarkeit der Entscheidungsfindung durch die Vulnerabilität der Patientin limitiert sein kann. Als Alternative zum Autonomiekonzept von Beauchamp und Childress wird anschließend eine Entscheidungsfindung auf der Grundlage biographischer Identität in Anlehnung an das Konzept der personalen Autonomie nach Quante erörtert. (shrink)

It has often been claimed that orthodox thinking about personal identity undermines the moral authority of advance directives in dementia by implying that the signer of the directive is numerically different from the severely demented patient. This is the ‘identity problem'. I introduce the problem, outline some well‐known solutions, and explain why they might be deemed unattractive. I then propose an alternative solution. It promises to be compatible with orthodox thinking about personal identity. I discuss three ways in which it (...) might be challenged and find that none is convincing. Personal identity is no bar to the moral authority of advance directives. (shrink)

Sexual self-determination is considered a fundamental human right by most of us living in Western societies. While we must abide by laws regarding consent and coercion, in general we expect to be able to engage in sexual behaviour whenever, and with whomever, we choose. For older people with dementia living in residential aged care facilities (RACFs), however, the issue becomes more complex. Staff often struggle to balance residents' rights with their duty of care, and negative attitudes towards older people's sexuality (...) can lead to residents' sexual expression being overlooked, ignored, or even discouraged. In particular, questions as to whether residents with dementia are able to consent to sexual activity or physically intimate relationships pose a challenge to RACF staff, and current legislation does little to assist them. This paper will address these issues, and will argue that, while every effort should be made to ensure that no resident comes to harm, RACFs must respect the rights of residents with dementia to make decisions about their sexuality, intimacy and physical relationships. (shrink)

It is a common experience among care professionals that persons with dementia often say ‘no’ to conventional caring measures such as taking medication, eating or having a shower. This tendency to say ‘no’ may also concern the use of assistive technologies such as fall detectors, mobile safety alarms, Internet for social contact and robots. This paper provides practical recommendations for care professionals in home health care and social care about how to respond to such resistiveness towards assistive technologies. Apart from (...) the option of accepting the ‘no’, it discusses a number of methods for influencing persons with dementia in order to overcome the ‘no’. These methods range from various non-coercive measures—including nudging—to coercion. It is argued that while conventional caring measures like those mentioned are essential for survival, health or hygiene, assistive technologies are commonly merely potentially beneficial supplements. With this in mind, it is concluded that care professionals should be more restrictive in using methods of influence involving some degree of pressure regarding assistive technologies than regarding conventional caring measures. (shrink)