Karin Jongsma

Beyond competence: advance directives in dementia research

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 (ARD). 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.

The implausibility of response shifts in dementia patients

Dementia patients may express wishes that do not conform to or contradict earlier expressed preferences. Our understanding of the difference between their prior preferences and current wishes has important consequences for the way we deal with advance directives. Some bioethicists and gerontologists have argued that dementia patients change because they undergo a ‘response shift’. In this paper we question this assumption. We will show that proponents of the response shift use the term imprecisely and that response shift is not the right model to explain what happens to dementia patients. We propose a different explanation for the changed wishes of dementia patients and conclude that advance directives of dementia patients cannot be simply put aside.

Advance directives in dementia research: The opinions and arguments of clinical researchers − an empirical study

In order to discover an effective treatment for dementia it is necessary to include dementia patients in clinical research trials. Dementia patients face an increased risk to lose the capacity to consent to research participation, and research possibilities with incompetent participants are legally strictly limited. One solution is for patients to consent to research through an advance research directive (ARD) whilst still competent. In order to explore whether such a directive would be useful and valuable in practice we conducted a qualitative study (13 interviews). We explored the opinions and arguments of researchers in the field of dementia, aiming to map the possibilities and constraints of ARDs. It was argued that a positive ARD could be valuable to discuss research participation with proxies, and patients with a negative ARD will be excluded from research trials. However, it is argued that an ARD cannot replace the informed consent procedure, and in practice proxy dissent will overrule written consent. The practical use of these directives is thus limited, as most researchers will not comply with positive directives.

The relevance of different trust models for representation in patient organizations: conceptual considerations

BackgroundTrust within organizations is important for ensuring members’ acceptance of the organization’s activities and to expand their scope of action. Remarkably, Patient Organizations (POs) that often both function as a forum for self-help and represent patients on the health-political level, have been understudied in this respect. This paper analyzes the relation between trust and representation in POs. We distinguish between two models of representation originating from political theory: the trustee and delegate model and between two types of trust: horizontal and vertical trust.MethodsOur theoretical approach is illustrated with an analysis of 13 interviews with representatives of German POs.ResultsWe have found that the delegate model requires horizontal trust and the trustee model vertical trust. Both models: horizontal/delegate and vertical/trustee exist within single POs.ConclusionsThe representation process within POs demands a balancing act between inclusion of affected persons and strategically aggregating a clear-cut political claim. Trust plays in that process of coming from individual wishes to collective and political standpoints a major role both in terms of horizontal as well as vertical trust. Horizontal trust serves the communication between affected members, and vertical trust allows representatives to be decisive.

The usual suspects: why techno-fixing dementia is flawed

Dementia is highly prevalent and up until now, still incurable. If we may believe the narrative that is currently dominant in dementia research, in the future we will not have to suffer from dementia anymore, as there will be a simple techno-fix solution. It is just a matter of time before we can solve the growing public health problem of dementia. In this paper we take a critical stance towards overly positive narratives of techno-fixes by placing our empirical analysis of dementia research protocols and political statements in a framework of technology assessment. From this perspective, it becomes obvious that a techno-fix is just one of many ways to approach societal problems and more importantly that technologies are way less perfect than they are presented. We will argue that this narrow scope, which focusses on the usual suspects for solving illnesses, reduces dementia to organismic aspects, and may be counterproductive in finding a cure for dementia. We conclude with outlining how the narrow scope can be balanced with other narratives and why we should have a reasonable scepticism towards the usual suspects.

Morally Relevant Similarities and Differences between Children and Dementia Patients as Research Subjects: Representation in Legal Documents and Ethical Guidelines

Children and adults with dementia are vulnerable populations. Both groups are also relatively seldom included in biomedical research. However, including them in clinical trials is necessary, since both groups are in need of scientific innovation and new therapies. Their dependence and limited decision-making capacities increase their vulnerability, necessitating extra precautions when including them in clinical trials. Beside these similarities there are also many differences between the groups. The most obvious one is that children have an entire life ahead of them and will become persons with certain ideals and preferences, while adults with dementia have lived a life in which they have expressed their ideals and preferences. Some of the available research guidelines recognize these differences, setting one list of specific requirements for groups of incapacitated adults and another list for children. Other documents, however, do not differentiate and only set requirements for subjects unable to consent as a single category of subjects. In this article we analyse to what extent the similarities and differences between the two groups are represented in legal documents and ethical guidelines. The article presents an overview and an analysis of the requirements for doing research with children and dementia patients. We conclude with suggestions about how to better incorporate the morally relevant aspects of these two groups in legislation and ethical guidelines.

Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel

This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups (POs) in relation to two recent upheavals: the critique of social stigmatization and biomedical research focusing on prediction. Based on twenty-six semi-structured interviews conducted in 2016–2017 with members, service recipients, and board representatives of POs in Germany and Israel, a comparative analysis was conducted, based on a grounded theory approach, to detect emerging topics within and across the POs and across national contexts. We identified a heterogeneous landscape, with the only Israeli PO focusing strongly on caretakers, whereas in Germany several POs claim to represent this patient collective. Shared aims of all POs were fighting social stigma, balancing the loss of patients’ individual autonomy, and the well-being of caretakers. By highlighting the emergence of new groups of dementia self-advocacy against the more traditional advocacy by others, this study highlights how advocacy and representation in the context of AD are embedded in the discursive context of stigmatization and revised disease conception. Future developments in early diagnosis and prediction of dementia, with more affected people likely to conduct dementia self-advocacy, might challenge existing representation structures even more.

One For All, All For One? Collective Representation in Healthcare Policy

Healthcare collectives, such as patient organizations, advocacy groups, disability organizations, professional associations, industry advocates, social movements, and health consumer organizations have been increasingly involved in healthcare policymaking. Such collectives are based on the idea that individual interests can be aggregated into collective interests by participation, deliberation, and representation. The topic of collectivity in healthcare, more specifically collective representation, has only rarely been addressed in (Western) bioethics. This symposium, entitled: “Collective Representation in Healthcare Policy” of the Journal of Bioethical Inquiry draws attention to this understudied topic from a variety of disciplines, within a variety of socio-cultural contexts. We draw attention to important ethical, cultural, and social questions, and into the practices, justifications for, and implications of collective representation of patients in healthcare policy.

Return to childhood? Against the infantilization of people with dementia

The idea that dementia is essentially a return to childhood and those affected must somehow be similar to children constitutes a deeply rooted and pervasive cultural trope. While such tropes may be helpful in making sense of an otherwise elusive and inscrutable state, they can at the same time promote inadequate understandings of dementia and hence also influence our attitudes and behaviour towards those affected in several problematic ways. In the present work, we provide a detailed account of the origins and implications of the idea that people with dementia are somehow similar to children. In order to spell out the normative significance of this trope and to analyse its shortcomings, we will rely on a life-course perspective. We will point out that the second-childhood trope does not do justice to the particularities of the life phases of both children and people with dementia. This lack of biographical sensitivity brings about undignified treatment of and harm to those who have previously lived more autonomous lives. In conclusion, we will argue that people with dementia should not be equated with children as they are at a different point in their lives. This critical analysis of the second-childhood trope shows the usefulness of a culturally and biographically sensitive theoretical framework for bioethical reflection. In particular, it provides reasons to reject infantilizing attitudes and behaviours and instead take seriously the personality, values and preferences shaped throughout the course of an individuals life.

Why Neural Determinism is Not Real Determinism and Why Mental States Cannot Act

If this is right, and the owner price gouges, then the woman’s taking of the art supplies would not violate his rights. If she chooses to take the supplies to punish him because she believes he has forfeited his legal and moral rights to them, then it seems the nonconsequentialist reasons against theft discussed earlier do not apply and she has a compelling reason to take the supplies. Furthermore, if Darby and colleagues are right and the woman’s bvFTD makes her indifferent to the expected consequences of her actions, then she has compelling reasons to take them and no reason not to. In either case, she would be morally responsible—praiseworthy—for taking the supplies. One troubling aspect about Case 1 is that although Darby and colleagues contend bvFTD patients cannot consider the consequences of their actions, it would be quite difficult to understand the woman’s behavior unless her choice was at least partially influenced by the expected outcome that she might walk away with the art supplies. It is not clear how bvFTD actually affects patients, but consider two possible ways: