Browsing by Author "Perry, Julia"

Abstract Given the lack of effective curative treatment options and in light of a significant reconceptualization of Alzheimer’s disease, the focus of dementia research has shifted towards prevention, risk prediction, and detection in very early disease stages. In the context of these shifts, the edited volume Preventing Dementia?: Critical Perspectives on a New Paradigm of Preparing for Old Age (edited by Annette Leibing and Silke Schicktanz) collects critical and insightful positions on the new paradigm of dementia prevention from an interdisciplinary and international perspective. The editors introduce the overarching topic of prevention by reflecting on the optimistic framing of modifiable risk factors and their novelty in the dementia context. Leibing and Schicktanz call for a cautious reception of the findings in the Lancet report(s) and draw attention to epistemic, ethical, and socio-political issues of what the editors term the contested “new dementia” and to the effect that this might have on rethinking individual and societal perceptions of aging. The contributions of the anthology depict the social and cultural dimensions of dementia discourses and consider the ethical implications of the changing conceptions of Alzheimer’s disease as well as the shift towards early disease stages and prevention. With this, the anthology initiates a debate about the often implicit unresolved social, ethical, and political implications and preconditions of the medical understanding and handling of cognitive disorders.

Abstract Anticipation of future decisions can be important for individuals at risk for diseases to maintain autonomy over time. For future treatment and care decisions, advance care planning is accepted as a useful anticipation tool. As research with persons with dementia seems imperative to develop disease-modifying interventions, and with changing regulations regarding research participation in Germany, advance research directives (ARDs) are considered a solution to include persons with dementia in research in an ethically sound manner. However, little is known about what affected people deem anticipatable. This contribution provides a critical reflection of the literature on anticipation and of a qualitative study on the assessment of ARDs with persons with cognitive impairment in Germany. It combines theoretical and empirical reflections to inform the ethical-legal discourse. Anticipation involves the conceptual separation of the past, the present, and the future. Including dimensions such as preparedness , injunction , and optimization helps in establishing a framework for anticipatory decision-making. While dementia may offer a window of time to consider future decisions, individual beliefs about dementia including fears about stigma, loss of personhood, and solitude strongly impact anticipating sentiments. Concepts of anticipation can be useful for the examination of uncertainty, changing values, needs, and preferences interconnected with the dementia trajectory and can serve as a means to make an uncertain future more concrete. However, fears of losing one’s autonomy in the process of dementia also apply to possibilities of anticipation as these require cognitive assessment and reassessment of an imagined future with dementia.

Abstract Background Dementia impairs the ability of people with dementia to be autonomous and independent. They need support from third parties, who should ideally respect their autonomy and independence as much as possible. Supporting people with dementia can be very burdensome for caregivers and numbers of patients increase while numbers of potential caregivers decline. Digital assistive technologies (DATs) that directly support patients or their caregivers may help bridging the increasing gap between need of support and available resources. DATs have the potential to preserve the autonomy and independence of people with dementia and promote their abilities, if they are properly designed in close interaction with future users. In our study, we focused on ethical concerns, technological requirements, and implementation criteria for DAT in general and specifically to support outdoor mobility of people with dementia. Methods We applied a qualitative approach and conducted a World Café (2 tables, n = 7) and an online focus group (n = 6) with people with dementia, relatives, healthcare professionals, scientists, ethics experts, and experts for digitally-assisted medical care. We descriptively analyzed the data using a content analysis approach. Results The participants reported technological (e.g., lack of Wi-Fi), financial (e.g., expensive devices or lack of budget for DATs), political (e.g., legal hurdles such as the European Medical Device Law or data protection regulations) as well as user-related hurdles (e.g., lack of digital competence) for the implementation of DAT in dementia care. Among the issues discussed were the importance of autonomy, independence, safety, privacy, and questions of decision making capacity in DAT’s use. Participants identified opportunities and benefits in self-learning, situation-aware DATs and wished for dementia-friendly communities. They emphasized the value of personal interaction that should not be replaced, but rather supported by DAT. Conclusion The results revealed multiple hurdles and ethical concerns for DAT use and provided recommendations for designing and implementing DATs. Further investigations are needed on the impact of DAT on personal interactions in caregiving and the role of DAT in dementia-friendly communities.

In Deutschland sind derzeit ca. 1,7 Mio. Menschen an Demenz erkrankt. In der aktuellen Demenzforschung zeichnet sich ein Paradigmenwechsel bei der Prädiktion, Früherkennung und Diagnose von Demenz ab. Mit dem vom Bundesministerium für Bildung und Forschung (BMBF) geförderten Projekt „Entscheidungskonflikt prädiktive Demenz-Diagnostik: Diskursverfahren zu Beratungs- und Ethikkompetenzen mit Stakeholdern und Studierenden“ sind wir, vom Institut für Ethik und Geschichte der Medizin der Universitätsmedizin Göttingen in Kooperation mit dem IEGUS - Institut ungeklärte rechtliche, ethische und soziale Dilemmata im Kontext der Prädiktion angegangen. Um diese Herausforderungen auch für zukünftige Berufstätige zugänglich zu machen sowie eine Sensibilisierung des Themas Demenz zu ermöglichen, haben wir im Projekt ein Lehrkonzept entwickelt. Das Lehrkonzept richtet sich vorrangig an Lehrende und Lernende aus gesundheitsbezogenen Studiengängen und Ausbildungsprogrammen. Hierbei wird vor allem die Vermittlung ethischer und praktischer Fragestellungen der Demenz und der Demenzprädiktion erprobt.

Biomarkers for predicting Alzheimer’s disease (AD) are advancing and their implementation in various healthcare systems is imminent. There is a need for ethical standards addressing information needs, socio-ethical concerns, and expectations of healthy and at-risk persons. We present an ethical approach that integrates different existing ethical frameworks and discussion of our empirical, cross-cultural findings in a multi-layered perspective by addressing three levels. The micro-level focuses on the communication between counseling professionals, persons at risk or in an early stage of dementia, and family members. The meso-level addresses interprofessional cooperation and exchange as a key element for best person-centered care. The macro-level considers public health promotion, the media, and public-funded research. This approach allows to address key ethical concepts including beneficence, non-maleficence, autonomy, informational self-determination, empowerment, and justice. Our contribution specifically examines the ethical challenges associated with AD prediction by means of biomarkers, based on insights from a German-Israeli comparison, and promotes a transdisciplinary discussion across different healthcare contexts. We propose a reflection on three levels to go beyond the clinical counseling context and to consider the rapidly evolving field of biomarkers in the coming years. Our ethical-practical recommendations should not be considered final, but rather procedural and will require continuous adaptation regarding culturally varying practices, new algorithms, meta-analyses, and re-evaluation of established recommendations.

In clinical research – whether pharmaceutical, genetic or biomarker research – it is important to protect research participants’ autonomy and to ensure or strengthen their control over health-related decisions. Empirical–ethical studies have argued that both the ethical concept and the current legalistic practice of informed consent should be adapted to the complexity of the clinical environment. For this, a better understanding of recruitment, for which also the physician–patient relationship plays an important role, is needed. Our aim is to ethically reflect communication processes by identifying patterns used by physicians to motivate patients’ participation in clinical research and to assess whether patients also use these patterns in formulating their own research motivation. We conducted a secondary analysis with empirical data from a research project involving physicians and patients in a clinical research setting of a biomarker study for rectal cancer treatment. Our empirical data included observations of physician–patient consultations ( n = 54) and semi-structured interviews with patients ( n = 40). Overall, we collected 93 interviews. We found two dominant communication patterns, which physicians applied for motivating patients to take part in this research study. Some forms of these patterns tend to mislead patients’ understanding, while others could justifiably be applied in this consultation setting without undermining patients’ autonomy. This insight that the physician–patient communication has a strong influence on patients increases the importance to strengthen physicians’ ethically acceptable communication patterns regarding research participation. We further suggest that there is a need for a critical reflection of the ethics committee’s requirements for information regarding research participation.

<p xmlns:mml="http://www.w3.org/1998/Math/MathML" xmlns:ali="http://www.niso.org/schemas/ali/1.0/"> <bold>Abstract:</bold> Societal and scientific interest in the prediction and early diagnosis of Alzheimer’s disease is growing. However, decisions regarding early diagnosis must be well-considered. The decision-making process requires specific counseling for concerned individuals, which is currently missing. In our project “Well Advised”, we investigate the needs and expectations of people concerned about their memory regarding counseling services in Germany. Using a mixed-methods approach, we analyze the evaluative interviews from telephone counseling (<italic toggle="yes">n</italic> = 44) and one expert focus group with 4 participants. Our evaluation shows a great need for information; the low-threshold telephone counseling service is appreciated. The topics of interest of those seeking advice concern medical-ethical issues of autonomy, the right (not) to know, and risk-benefit considerations. From these findings, we developed a training module and counseling guideline.</p>