Appeals to the dignity of people with dementia are widespread in the current literature on dementia care. One influential account of dignity in the wider philosophical and bioethical literature that has remained underexplored in the context of dementia care is that of Martha Nussbaum. This paper critically examines Nussbaum’s account of dignity and aims to determine what moral guidance this account can offer for the provision of care to people with dementia. To that end, first, I identify four possible objections to appeals to dignity in dementia care. These objections are (1) redundancy of the dignity talk, (2) exclusionary implications, (3) reliance on (suspect forms of) speciesism and (4) unclear practical implications. Then, I discuss whether, and to what extent, Nussbaum’s account of dignity can overcome these objections. I argue that Nussbaum’s account, in its original form, struggles to overcome the problem of exclusionary implications and consequently the problem of unclear practical implications. I argue for a modified version of Nussbaum’s account of dignity. I demonstrate that this modified version can better overcome all of the four objections, and it provides relatively clearer moral guidance for the provision of care to people with dementia. The modified version of Nussbaum’s account is predicated on a novel dementia-specific model of flourishing, which draws on Kitwood and Bredin’s empirically informed list of indicators of well-being for people with dementia.
Under‐representation of people with dementia in clinical research remains a significant obstacle to develop evidence‐based practice guidelines and recommendation for dementia care and slows down the development of disease‐modifying pharmacological interventions. This is partly due to the ethical challenges and complexities of recruiting people with dementia for clinical trials. The traditional approach adopted by research ethics committees and regulatory bodies has been to protect people with dementia as a vulnerable population from harms of participating in research. There are concerns that this approach is unduly rigid, precludes the conduct of necessary research, and has exclusionary, paternalistic and discriminatory ramifications. As such, there are increasing calls to shift to a new hybrid facilitative/protective approach. This paper identifies 4 strategies to operationalise the facilitative/protective approach in the context of dementia research. These are: (i) embedding dementia research in clinical care; (ii) increasing the recruitment of people at preclinical stages of dementia; (iii) streamlined proxy consent procedures; and (iv) advance research consent. I note that all 4 strategies hold the promise of facilitating the recruitment of people with dementia in clinical research. Nonetheless, they give rise to a diverse range of new ethical concerns and issues. This necessitates further scholarly work to explore possible ways to address the ethical concerns and issues arisen by the uptake of protective/facilitative approach. In particular, further research is necessary to clarify, to what extent, the said strategies ameliorate or increase the vulnerability of people with dementia.
In this paper, I critically examine Kitwood's account of personhood for people with dementia. His account has been influential in supporting appeals to personhood in both clinical and bioethical literature on dementia care. I demonstrate that Kitwood's account does not run into common objections against invoking personhood as a normative notion, namely, the objection of exclusionary implications and the objection of redundancy. I argue, however, that Kitwood's account suffers from two other major conceptual issues. These include (a) unreasonable social contingency, and thus, precariousness, of his notion of personhood for people with dementia; and (b) insufficient theoretical connection between his account of personhood and his proposed list of indicators of well‐being for people with dementia. Despite these issues, I do not agree with the following view: that, in the context of dementia care, scholars should refrain from appealing to personhood considerations. Instead, I defend the view that while Kitwood fails to offer a compelling theoretical account of personhood of people with dementia, his empirically driven list of indicators of well‐being and his notion of malignant social phycology seem to be sensitive to key ethical considerations relevant to dementia care. I propose that we pursue alternative ways of explaining what is morally (un) desirable about them without (explicit) appeal to personhood.
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.
Sigrid Fry-Revere's The Kidney Sellers: A Journey of Discovery in Iran, an allegedly first-hand examination of the Iranian paid kidney donation model, has been criticized by Koplin in an essay formerly published in the Monash Bioethics Review. Koplin especially challenges Fry-Revere's claim that financially compensating kidney vendors might facilitate altruistic kidney donation. The current situation in Iran, according to Koplin, suggests that the market model has undermined altruistic donation. On this point, this commentary tries to show that healthcare policymakers in Iran no longer see the Iranian paid kidney donation model as a sustainable and ethically justifiable status quo. Briefly touching on the criticisms that have been made even by some positive commentators of the Iranian model, this commentary aims to call attention to the fact that the current dynamic within healthcare policymaking in Iran seeks primarily to decrease its reliance on the organ market instead of revising and modifying it. This complicates the plausibility of any kind of extrapolation, replication or extracting empirical support from the Iranian model to create organ markets in other countries, for example, as Fry-Revere suggests to conduct a trial of a financially incentivized kidney donation scheme in the US. The conclusion is that the Iranian healthcare system should tackle the organ shortage through increasing altruistic living and postmortem kidney donations. This might also provide, finally, a space for conducting extensive and long-term follow-up studies on well-being, satisfaction and social integration of Iranian kidney vendors.
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