Julian Hughes

With more people in the world living into older age, Alzheimer's and other Dementias: The Facts takes a comprehensive look at the spread of dementia, and provides authoritative information and practical advice for sufferers, their families, and the medical professionals who care for them. Written by a consultant in old age psychiatry, the book provides an overview of all the different types of dementia (including younger-onset dementias), from the most-recognized - Alzheimer's - to the less-frequent types, such as those caused by inherited metabolic disorders or HIV. The book guides the reader step-by-step through how the brain works, and explains in clear and simple language the effect of dementias on the brain, and the impact on an individual's cognitive function. A dedicated chapter explains how a diagnosis is reached, including the different modes of assessment, from blood tests carried out by a GP, to specialist scans, highlighting how the brain actually works. Detailed sections cover the latest treatments available, including the controversial use of antipsychotic medication, and the possibility of disease-modifying treatments in the future. The book also explains how the multi-disciplinary team works together to look after the sufferer's social needs, such as bathing and washing, as well as their spiritual and palliative needs. Alzheimer's and other Dementias: The Facts provides all the relevant information and guidance for sufferers, family and their care-givers to choose the right intervention at the right time, to create - as the book advocates - a unique and personalized management plan.

Este artículo discute los problemas relacionados con la toma de decisiones en la demencia (y otras deficiencias cognitivas progresivas). Presenta cinco de estos temas; a saber, los relacionados con el lugar de residencia, la atención forzada, la medicación encubierta (en relación con la cual también mencionaré la verdad), la sexualidad, la comida y la bebida, que incluye cierta consideración de suspender y retirar el tratamiento en general. Después reflexionará sobre cómo se trata la toma de decisiones en la práctica clínica; posteriormente discutirá algunos temas con-ceptuales: capacidad (o competencia), mejores intereses y toma de decisiones con apoyo. Terminará con algunos comentarios sobre la importancia de la individualidad en relación con los problemas éticos que rodean la toma de decisiones en la demencia.

BackgroundConcerns about decision making related to resuscitation have led to two important challenges in the courts resulting in new legal precedents for decision-making practice. Systematic research investigating the experiences of doctors involved in decisions about resuscitation in light of the recent changes in law remains lacking.AimTo analyse the practice of resuscitation decision making on hospital wards from the perspectives of doctors.DesignThe data presented in this paper were collected as part of a wider research study of end-of-life care in an acute hospital setting. Data collection comprised ethnographic non-participant observation on two acute hospital wards and individual interviews with patients, relatives and healthcare professionals caring for patients thought to be approaching the end of life. Data were analysed using a constructivist grounded theory approach.ResultsDiscussions and decision making about resuscitation present many challenges for those involved on acute medical wards. The data highlight the potential for multiple interpretations of legal precedents, creating misunderstandings that may impact patient care in less positive ways.ConclusionsThis paper provides unique insights into how doctors respond to the changing medico-legal culture and the subsequent effects on patient care. It demonstrates how the juridification of medical practice can occur. It highlights the potential benefit of a structure to support clinicians, patients and relatives in discussing and navigating decisions around care at the end of life in line with the patient’s wishes and preferences. Recommendations for future research are made and legal ramifications are discussed.

In lieu of an abstract, here is a brief excerpt of the content:Introduction:The Heat of Mild Cognitive ImpairmentJulian C. Hughes (bio)Keywordsaging, explanation, mild cognitive impairment, understanding, valuesDebates about mild cognitive impairment (MCI) are generating heat, albeit civilized heat. But under the surface, as I think the papers in this special issue demonstrate, the civilized heat comes from a good deal of passion. One way in which philosophy can contribute to the debate is by making plain the sources of this passion, so that the motivating forces are clearer.One motivating force is this: There will be people who do not have dementia but who have symptoms or signs that might predict dementia, which cause them concern, whom we might help by early intervention. The intervention might involve advice and support, or it might involve some form of drug treatment; and in the utopia of our dreams, it might involve prevention. All of this is very motivating for clinical scientists. It also offers a laudable motivation to pharmaceutical companies, who simultaneously must have regard to the possibility of profits for their shareholders.Here, however, is an alternative motivation: The effects of aging must not be ignored if help can be given, but older people must not be stigmatized by a medical process that thrusts disabling labels on them. People age, but they age differently, and it is better to recognize difference, both from a biological and from a philosophical perspective. Thus, a passionate commitment to the cause of individual agency in old age and a desire for authentic autonomy for older people provide strong motivation too.At root, then, the conflicting passions over MCI reflect the age-old struggle in the philosophy of psychiatry between the natural sciences (Naturwissenschaften) and the human or cultural sciences (Geisteswissenschaften): the tension is between a tendency to approach the problem with the aim of eliciting a scientific explanation and a tendency to try to achieve a human and cultural understanding of the phenomena (Phillips 2004). So, although MCI can be regarded as an explanatory diagnostic entity with some predictive value, it can also be regarded as a label that might cause harm or as a human phenomenon that requires understanding. Furthermore, MCI raises ontological questions about the nature of disease entities. And there is a wider issue as well about how aging itself should be regarded.From a biological perspective, it turns out there is no clear cutoff between what is normal and what [End Page 1] is not. Hence, in a number of ways, values seem to be as important as facts (Sadler 2005). Perhaps philosophy should content itself with saying no more than this: MCI ought not to be considered or debated as if it lies outside the realm of evaluative judgment. The very possibility of its existence as a clinical entity is a matter worthy of moral and social discourse.The direction of thought indicated here and in the papers that follow, however, is more radical than the easily won point that the "diagnosis" of MCI is not value free. On the back of the biological point, that there is a continuum between physiological and pathological aging, is the broader philosophical point that aging can neither be understood solely in terms of physiology nor in terms of pathology, nor even in terms of both. Ageing represents, inter alia, a social and cultural phenomenon manifest in the context of particular psychological and spiritual responses to a mixture of physiological adaptations and pathological predispositions. Without the broader picture, we tend to characterize old age, as Michael Bavidge has suggested elsewhere, in terms of deteriorations: "We should think of old age as offering alternative rather than impaired ways of experiencing life" (2006, 49). The difficulty is that any diagnosis seems to suggest impairment in one form or another. The radical suggestion, therefore, might be to commend descriptions that encourage shared understanding over and above the giving of names and labels.In a brief critique of the scientific approach to "banal memory disorders and MCI", Jean-Marie Léger, like Bavidge, regrets the extent to which people with cognitive impairment "are described in terms of what they have lost, with no regard for the wealth of faculties which are still present." Léger...

In this paper I consider, in connection with dementia, two views of the person. One view of the person is derived from Locke and Parfit. This tends to regard the person solely in terms of psychological states and his/her connections. The second view of the person is derived from a variety of thinkers. I have called it the situated-embodied-agent view of the person. This view, I suggest, more readily squares with the reality of clinical experience. It regards the person as embedded in a history and culture. The human person is also an embodied agent. I contend that this view encourages a more appropriate approach towards the ethical issues that arise in dementia and towards people with dementia

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

Background For a variety of sociological reasons, different types of centredness have become important in health and social care. In trying to characterize one type of centredness, we were led to consider, at a conceptual level, the importance of the notion of centredness in general and the reasons for there being different types of centeredness. Method We searched the literature for papers on client-, family-, patient-, person- and relationship- centred care. We identified reviews or papers that defined or discussed the notions at a conceptual level. The reviews and papers were analyzed as text transcripts. Results We identified 10 themes that were common to all the types of centredness. At a conceptual level we could not identify thematic differences between the types of centredness. These findings were subjected to a philosophical critique using ideas derived from Wittgenstein. Conclusion Different types of centredness are required in different contexts. The differences are justified by their practical utility. The unifying themes of centredness, however, reflect a movement in favour of increasing the social, psychological, cultural and ethical sensitivity of our human encounters

It might seem too obvious to start with this quotation:O day and night, but this is wondrous strange!And therefore as a stranger give it welcome.There are more things in heaven and earth, Horatio,Than are dreamt of in your philosophy.But then, I think it is obviously correct, as Professor Waterman suggests, that "There are more things in heaven and earth" than simply the application of the scientific method to medical practice. Perhaps there are two quick comments to make about the quotation. First, in Shakespeare's time, "philosophy" would have included science; second, Shakespeare apparently contemplated using "our" rather than "your." So Hamlet is speaking to us, not just to Horatio, and he's speaking about our...

We reflect, using a vignette, on conceptual tensions and the value judgements that lie behind difficult decisions about whether or not the older person with dementia should return home or move into long-term care following hospital admission. The paper seeks, first, to expose some of the difficulties arising from the assessment of residence capacity, particularly around the nature of evaluative judgements and conceptual tensions inherent in the legal approach to capacity. Secondly, we consider the assessment of best interests around place of residence, which demonstrates significant conceptual tensions. In addition, ‘best interests’ raise issues around the perception of risk and the perceptions of the family and crucially involve the notions of autonomy and trust. Finally, we not only gesture at some practical considerations based on insights from values-based medicine, but also make the suggestion that we require tighter functional assessments of residence capacity coupled with broader judgements about best interests.

BackgroundDecision-making in end-stage dementia is a complex process involving medical, social, legal and ethical issues. In ESD, the person suffers from severe cognitive problems leading to a loss of capacity to decide matters regarding health and end-of-life issues. The decisional responsibility is usually passed to clinicians and relatives who can face significant difficulty in making moral decisions, particularly in the presence of life-threatening swallowing problems.AimThis study aimed to understand the decision-making processes of clinical teams and relatives in addressing life-threatening swallowing difficulties in ESD in long-term care in Malta.MethodThe study followed a qualitative approach where six case studies, involving six different teams and relatives of six different patients, were interviewed retrospectively to understand their decision-making in connection with the management of swallowing difficulties in ESD. Data were collected through semistructured interviews with each stakeholder. All data were transcribed and subjected to thematic analysis.ResultsFour themes were identified: the vulnerability of patients in dementia decision-making; the difficult role of relatives in decision-making; the decisional conflict between aggressive care through tube feeding versus oral comfort feeding; a consensus-building decision-making process as ideal to facilitate agreement and respect for patient’s dignity.ConclusionDecision-making to manage swallowing difficulties in ESD is a challenging process, which involves an interpretation of personal values, beliefs, patient preferences, care needs and clinical practice. Better communication between clinicians and relatives in dementia helps promote agreement between stakeholders leading to a care plan that respects the dignity of patients at their end of life.

Highly reputable bodies have said that lying is to be avoided when speaking with people living with dementia, unless it cannot be. And yet, the evidence is that many professionals looking after people who live with dementia have been lying to them. I wish to consider an underlying philosophical justification for the moral position that allows lying under some circumstances whilst still condemning it generally. It can seem difficult to ignore the immorality of lying, but thinkers have developed arguments to get around the absolute prohibition. I shall argue that in concrete circumstances the object and the intended end of an action are not as clearly distinct as has been presumed. Further, looking at how language functions allows us to appeal to speech acts and to see the illocutionary force of a statement as way to broaden its purview. We need not think that the only options are between lying and not lying; there is also the possibility, in exigent circumstances, of ‘conforming to the reality’, which would allow a more nuanced account of moral acts, where the intentional nature of the act is no longer to lie. There are, thus, extreme concrete circumstances where not to speak the truth may be excusable, even if regrettable.

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.

This paper introduces the notion of patterns of practice and shows the extent to which it is useful at the level of practice and at a profound philosophical level. The notion makes deep connections with ideas in the realm of the philosophy of language and thought and, in addition, it connects to virtue ethics. Using the example of whether or not to admit someone using compulsory powers or whether to treat them in the community, the notion of patterns of practice can be used to demonstrate the internal and external coherence of decisions in psychiatric care and thus to offer clinical and ethical justification.

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

Dementia is an illness that raises important questions about our own attitudes to illness and aging. It also raises very important issues beyond the bounds of dementia to do with how we think of ourselves as people--fundamental questions about personal identity. Is the person with dementia the same person he or she was before? Is the individual with dementia a person at all? In a striking way, dementia seems to threaten the very existence of the self.LThis book brings together philosophers and practitioners to explore the conceptual issues that arise in connection with this increasingly common illness. Drawing on a variety of philosophers such as Descartes, Lock, Hume, Wittgenstein, the authors explore the nature of personal identity in dementia. They also show how the lives and selfhood of people with dementia can be enhanced by attention to their psychological and spiritual environment. Throughout, the book conveys a strong ethical message, arguing in favor of treating people with dementia with all the dignity they deserve as human beings. The book covers a range of topics, stretching from talk of basic biology to talk of a spiritual understanding of people with dementia. Accessibly written by leading figures in psychiatry and philosophy, the book presents a unique and long overdue examination of an illness that features in so many of our lives

Dementia is an illness that raises important questions about our own attitudes to illness and aging. It also raises very important issues beyond the bounds of dementia to do with how we think of ourselves as people - fundamental questions about personal identity. Is the person with dementia the same person he or she was before? Is the individual with dementia a person at all? In a striking way, dementia seems to threaten the very existence of the self. This book brings together philosophers and practitioners to explore the conceptual issues that arise in connection with this increasingly common illness. Drawing on a variety of philosophers such as Descartes, Locke, Hume, Wittgenstein, the authors explore the nature of personal identity in dementia. They also show how the lives and selfhood of people with dementia can be enhanced by attention to their psychosocial and spiritual environment. Throughout, the book conveys a strong ethical message, arguing in favour of treating people with dementia with all the dignity they deserve as human beings. The book covers a range of topics, stretching from talk of basic biology to talk of a spiritual understanding of people with dementia. Accessibly written by leading figures in psychiatry and philosophy, the book presents a unique and long overdue examination of an illness that features in so many of our lives.