Dementia has crept up on us, rather like D.W. Winnicott’s idea of the unwelcome change that we dread in the future, not realizing that it has already happened. Our own ageing is something we only see when it has arrived, through a veil of denial, as the artist Lucien Freud found when he said that he looked in the mirror every morning, misinterpreted the information that he received, and that is where his troubles started. As we age our body demands our attention, as the ego, will and life forces on one hand, and our physical capacity on the other, are increasingly mismatched. The darker side of cognitive decline has moved from being the butt of jokes around a bit of “senile” memory loss, to being one of the major challenges of the new century: a downside of (mostly) welcomed greater collective longevity than ever before in human history, bringing with it, the sting in the tail, the “epidemic” of dementia. According to the World Health Organisation, more than 50 million people now live with dementia worldwide – nearly 60% of whom live in low and middle income countries – and every year there are nearly ten million new casesFootnote1. Coming from nowhere in the charts of death causation, dementia is now either the leading contributory cause of death, or close to it. Far more than memory loss, it is actually a remorseless process of global physical and mental decline that can cause death in its own right.. Deaths due to dementia worldwide more than doubled between 2000 and 2016, making it the fifth leading cause of all global deaths in 2016 (compared to 14th in 2000) (World Health Organisation 2018). In some higher income countries it has become a leading cause of death. In Australia, for example, deaths from the leading cause, heart disease, have decreased over the past decade, while numbers of deaths from dementia, now the second leading cause of death, have increased by 68% (Australian Bureau of Statistics 2018). It is the leading cause of death for Australian women. Being played out over years, and often unrecognized for several in the early stages, dementia is making enormous demands on patients, families, carers, health systems, and entire societies (for good information, for example in the Australian context, see https://www.utas.edu.au/wicking). The ceiling of future care demand is not known, but the ‘area under the curve’ of encounters with health services, resulting from dementia, is exploding all over the world. The needs for health and social care are already exceeding capacity everywhere.

In a recent editorial in the journal, Dawson et al. (2018) called on the bioethics community to examine critically the “myth of neutrality” in bioethics—in particular the putative neutral stance of bioethics associations like the Australasian Association of Bioethics and Health Law (AABHL), as in cases “where sustained harm is deliberately inflicted on vulnerable populations or where there are clear failures to abide by international human rights norms” (483) and took as an example Australia’s treatment of asylum seekers. In an accompanying editorial, Ashby and Morrell (2018) point to the risk of conflating the academic analysis that is the primary activity of bioethics, with ethics as an engaged political force. They consider that bioethics earns public authority from the distillation from its analytic activity of strongly agreed normative positions such as professional ethics codes, but that this authority could be lost if bioethics is used directly in politically contentious debates. They conclude “It is probably therefore desirable for ethics as activism to be clearly separated off from the academic discipline itself and its normative consensus standards” (480).

The protection of vulnerable patients, consent to (or refusal of) medical treatment, the concept of best interests and definitions of futile treatment have all been extensively debated in the courts and addressed in relevant legislation. The only true clarity around any of these concepts is that they are complex and subject to individual interpretation, therefore it is unsurprising that they continue to present a challenge to the modern judiciary and legislature. A recent decision by the of the UK was called upon to consider, inter alia these concepts and others in the face of the challenging question of whether or not court guidance is always needed when loved ones and medical teams agree that it is in the best interests of a patient to withdraw and withhold artificial nutrition and hydration. The short answer? It’s complicated. The longer answer is considered below.

Learning from the profound challenge of dementia is an urgent priority. Success will require a critical deconstruction of current cultural and linguistic representations of this condition, and a kindling of novel and courageous approaches to re-conceptualise dementia’s meaning and experience. This symposium collects provocative ideas arising from various discourses, theoretical perspectives, and methodolgical approaches to explore new ways to understand dementia.

In this article, I explore how methods of investigation can allow us either to appreciate the intact cognitive and social abilities of people with Alzheimer’s disease or unwittingly obscure those same abilities. Specifically, I shall assert that (1) the biomedical- quantitative approach, while being generally appropriate for drug efficacy studies, does not allow us to appreciate the many significant strengths possessed by people diagnosed with dementia, (2) qualitative/narrative approaches do so admirably, and (3) understanding the cognitive and social strengths of people diagnosed is of paramount importance for developing optimal care giving approaches and reveals strikingly the shared humanity of those diagnosed with dementia and those deemed healthy.

Resident-to-resident aggression is quite prevalent in long-term care settings. Within popular and empirical accounts, this form of aggression is most commonly attributed to the actions of an aberrant individual living with dementia characterized as the “violent resident.” It is often a medical diagnosis of dementia that is highlighted as the ultimate cause of aggression. This neglects the fact that acts of aggression are influenced by broader structural conditions. This has ethical implications in that the emphasis on individual aberration informs public policy strategies for prevention with a focus on restricting the freedom of individuals using behavioural modification, drugs, or other restraints with the intent to protect others from harm. A more ethical approach requires attention to the structural conditions of long-term care that both foster aggression and constrain prevention efforts. To this end, we turn to a model of relational citizenship that offers a theory of embodied selfhood and relationality as essential to human dignity, thus entailing human rights protections. The application of an ethic based on this model offers a more holistic prevention strategy for resident-to-resident aggression by drawing attention to the critical need and obligation to promote human flourishing through system level efforts.

Recognizing the potential hidden artistic contributions of persons with dementia opens new opportunities for interpretation and potential communication. This visual essay explores the authors’ responses to the fragile objects of art produced by a person with severe dementia and examines what may be learned from them.

The study of Patrick, the artist who took up art after his diagnosis of dementia is enlightening on several fronts. That art and creativity should not be left to the able, for we are all able in our own ways. The sea of our minds pitches and lifts to the currents of our thoughts, our imagination. What wonder then that Patrick, the “practical man”, perhaps leaving art behind as a child, returned to it in his final years. I imagine there was a homecoming there. Now, with no need for any adult embarrassment, he felt liberated to paint. I remember clearly, patients in an Irish hospice and nursing home, painting scenes from their youth in the last week of their lives. Art and music therapy, embedded in their care, enlarged the possibility of time. It breathed air into the spirit of the patient, family and staff.

Dementia progressively isolates sufferers from their loved ones, who continue to search for meanings in their actions and words. As the condition progresses, meaning becomes harder and harder to find. Yet the actions of the sufferer may contain patterns, hinting at meanings that tempt observers to interpret from their own standpoint. We report the patterns repeated by a sufferer from Alzheimer’s disease, artistic arrangements that take time to make, and appeal to observers. To the sufferer, these arrangements seem to have no value beyond the fact of their creation. We wonder how far we can go as observers in imposing interpretations on these patterns of activity, which seem beautiful and poignant to us, but are evanescent and unremarked by their creator.

This essay discusses the use of analogies drawn from the Holocaust in cultural representations and critical scholarship on dementia. The paper starts with a discussion of references to the death camp in cultural narratives about dementia, specifically Annie Ernaux’s account of her mother’s dementia in I Remain in Darkness. It goes on to develop a critique of Italian philosopher Giorgio Agamben’s work on biopolitics and “bare life,” focusing specifically on the linguistic foundations of his thinking. This underpins a consideration of the limitations of his philosophy and ontologically derived notions of weakness and passivity in imagining life with dementia as a potential site of agency or as the locus for transformative ideas about care, community, and non-instrumentalist conceptions of human value.

Sue Petrovski’s short book, A Return Journey: Hope and Strength in the Aftermath of Alzheimer’s, is a collection of personal stories as she and her husband cared for her mother during the course of the disease as well as the shared stories of others. A Return Journey provides an insider’s view of the challenges of caring for those with Alzheimer’s and is useful for current and future caregivers as well as those who are studying and working in the health professions.

Dementia is more than a disease. What dementia is, how it is understood, and how it is experienced is influenced by multiple factors including our societal preoccupation with individual identity. This essay introduces empirical and theoretical evidence of alternative ways of understanding dementia that act as a challenge to common assumptions. It proposes that dementia be understood as an experience of systems, particularly networks of people affected by the diagnosis. Taking this step reveals much about the dementia experience, and about what can be learned from persons with dementia and their networks of family, friends, and carers. It also suggests that dementia may be best thought of as an ecology that arises from the interaction between neuropathological change, people, language, and meaning. While challenging, this perspective may provide new ways of responding to dementia and caring for those affected by it.

Purpose: To determine motives and attitudes towards life-sustaining treatments (LSTs) by clinical and preclinical medical students. Methods: This was a scenario-based questionnaire that presented patients with a limited life expectancy. The survey was distributed among 455 medical students in preclinical and clinical years. Students were asked to rate their willingness to perform LSTs and rank the motives for doing so. The effect of medical education was then investigated after adjustment for age, gender, religion, religiosity, country of origin, and marital status. Results: Preclinical students had a significantly higher willingness to perform LSTs in all cases. This was observed in all treatments offered in cases of a metastatic oncologic patient and an otherwise healthy man after a traumatic brain injury (TBI). In the case of an elderly woman on long-term care, preclinical students had higher willingness to supply vasopressors but not perform an intubation, feed with a nasogastric tube, or treat with a continuous positive air-pressure ventilator. Both preclinical and clinical students had high willingness to perform resuscitation on a twelve-year-old boy with a TBI. Differences in motivation factors were also seen. Discussion: Preclinical students had a greater willingness to treat compared to clinical students in all cases and with most medical treatments offered. This is attributed mainly to changes along the medical curriculum. Changes in reasons for supplying LSTs were also documented.

The right to health implies, among other things, that individuals and communities must be allowed to have a voice in decisions concerning the definition of their well-being. The article argues for a more active participation of ethnocultural minorities in healthcare decisions and highlights the relevance of strategies aimed at creating a bottom-up engagement of people and groups, as well as of measures aimed at a broader organizational flexibility, in order to meet migrants’ and minorities’ needs. Finally, the article clarifies that these strategies are not simply the outcome of a welcoming attitude of the Western healthcare system but may be interpreted as a specific duty resulting from the notion of “particularly vulnerable groups,” as formulated by the ECtHR in its case law: when vulnerable groups are at stake, every decision about state actions and rules regarding healthcare should start from an a consideration of the specific conditions and needs of people belonging to vulnerable minority groups.

Patient engagement in healthcare is increasingly discussed in the literature, and initiatives engaging patients in quality improvement activities, organizational design, governance, and research are becoming more and more common and have even become mandatory for certain health institutions. Here we discuss a number of ethical challenges raised by this engagement from patients from the perspectives of research, organizational/quality improvement practices, and patient experiences, while offering preliminary recommendations as to how to address them. We identified three broad categories of ethical issues that intersect between the different types of patient engagement: (1) establishing a shared vision about goals of patient engagement and respective roles; (2) the process and method of engaging with patients; and (3) practical aspects of patient engagement. To explain these issues, we build from our personal, professional, and academic experiences, as well as traditions such as pragmatism and hermeneutics that stress the importance of participation, empowerment, and engagement. Patient engagement can be highly valuable at numerous levels, but particular attention should be paid to the process of engaging with patients and related ethical issues. Some lessons from the literature on the ethics of participatory research can be translated to organizational and quality improvement practices.

Many arguments have been made against gene editing. This paper addresses the commonly invoked argument that gene editing violates human dignity and is ultimately a subversion of human nature. There are several drawbacks to this argument. Above all, the concept of what human dignity means is unclear. It is not possible to condemn a practice that violates human dignity if we do not know exactly what is being violated. The argument’s entire reasoning is thus undermined. Analyses of the arguments involved in this discussion have often led to the conclusion that gene editing contravenes the principle of genetic identity (genetic immutability) thereby subverting a requisite of human dignity and ultimately threatening human nature. This paper refutes these arguments and shows that any opposition to gene editing cannot rely on the human dignity argument.

Whole brain failure constitutes the diagnostic criterion for death determination in most clinical settings across the globe. Yet the conceptual foundation for its adoption was slow to emerge, has evoked extensive scientific debate since inception, underwent policy revision, and remains contentious in praxis even today. Complications result from the need to relate a unitary construal of the death event with an adequate account of organismal integration and that of the human organism in particular. Advances in the neuroscience of higher human faculties, such as the self, personal identity, and consciousness, and dynamical philosophy of science accounts, however, are yielding a portrait of higher order global integration shared between body and brain. Such conceptual models of integration challenge a praxis relying exclusively on a neurological criterion for death.

Editors have increasing pressure as scholarly publishing tries to shore up trust and reassure academics and the public that traditional peer review is robust, fail-safe, and corrective. Hidden conflicts of interest (COIs) may skew the fairness of the publishing process because they could allow the status of personal or professional relationships to positively influence the outcome of peer review or reduce the processing period of this process. Not all authors have such privileged relationships. In academic journals, editors usually have very specialized skills and are selected as agents of trust, entrusted with the responsibility of serving as quality control gate-keepers during peer review. In many cases, editors form extensive networks, either with other professionals, industry, academic bodies, journals, or publishers. Such networks and relationships may influence their decisions or even their subjectivity towards a set of submitting authors, paper, or institute, ultimately influencing the peer review process. These positions and relationships are not simply aspects of a curriculum, they are potential COIs. Thus, on the editorial board of all academic journals, editors should carry a COI statement that reflects their past history, as well as actual relationships and positions that they have, as these may influence their editorial functions.