Identifying Stigmatizing Language Used by Israelis and Germans With a Mild Neurocognitive Disorder, Their Relatives, and Caregivers of People With Alzheimer's Disease.

OBJECTIVES: The purpose of the study was to examine and compare the dementia-related discourse and language used by people with mild neurocognitive disorder (MND), their family members, and family caregivers of people with Alzheimer's disease in Israel and Germany. DESIGN: This secondary qualitative analysis included focus groups and semistructured interviews. Thematic analysis was used to reveal the main discourses and stigmatic language used regarding dementia and people with dementia. SETTING: Israeli and German stakeholders. PARTICIPANTS: Forty-four Israeli and 44 German participants: 28 people with MND, 20 family members of people with MND, and 40 family caregivers of people with Alzheimer's disease. RESULTS: Two main discourses were identified: the tragedy and the biomedical discourse. The tragedy discourse included several subthemes: "Dementia as the worst-case scenario," "Nothing can be done about dementia," and "People with dementia are not human." The biomedical discourse stressed pathologic aspects of the condition. Similarities and differences were found between Israeli and German participants. CONCLUSIONS: The study indicates that, despite culture and language differences, the use of stigmatic discourse and stigmatizing language is common among people with close exposure to dementia in Israel and Germany. Efforts should be increased to develop a person-centered and dementia-friendly language.

Moral motivation regarding dementia risk testing among affected persons in Germany and Israel.

Recent advances in biomarkers may soon make it possible to identify persons at high risk for late-onset Alzheimer's disease at a presymptomatic (preclinical) stage. Popular demand for testing is increasing despite the lack of cure and effective prevention options and despite uncertainties regarding the predictive value of biomarker tests. This underscores the relevance of the ethical, cultural and social implications of predictive testing and the need to advance the bioethical debate beyond considerations of clinical consequences. Our qualitative study included three groups of affected persons: People with mild neurocognitive disorder, their relatives and family caregivers of people with dementia. We explored their moral motivations regarding predictive, biomarker-based testing and preclinical diagnostics. We interviewed affected individuals in Germany and Israel (N=88; 44 participants in each country). Transcripts of 12 focus groups and 12 semistructured interviews were content analysed with a focus on the moral motivations of affected persons in their justification of why they accept or reject predictive testing and early diagnosis. We grouped the underlying aspects of moral motivation into four ethical categories: beneficence as a form of personal utility focusing on well-being, the ties of responsibility linking families and their individual members, the importance of self-determination by later life planning and notions of a good life. In general, cultural parallels among these motives were very obvious. Cultural variation occurred mainly in openness to suicide, scepticism about test validity and emphasis on personal autonomy. The study underscores the importance of counselling for life-planning issues and of informing test candidates about problems with test validity and about the ambiguity of test results.

Attitudes towards prediction and early diagnosis of late-onset dementia: a comparison of tested persons and family caregivers.

Background: The focus on early detection of dementia and Mild Cognitive Impairment (MCI) diagnosis has entered the clinics' daily routine. However, there exist epistemic uncertainty and moral concerns whether early detection and prediction of dementia is clinically meaningful for the people affected, primarily due to the lack of effective treatment options.Methods: In this study, we adopted qualitative research methods. Twelve face-to-face interviews with tested persons with MCI and early dementia and five focus groups with family caregivers were conducted in Germany in order to explore and analyze their understanding and assessments of early detection and prediction of dementia in memory clinics.Results: Our study revealed that there was much uncertainty among the participants diagnosed with MCI especially when compared to the participants with an early dementia diagnosis. Their uncertainty concerned the meaning of a 'MCI' diagnosis as well as the validity of specific biomarker test results. Moreover, we identified different lines of moral issues for and against the tests among the participants. They include a) inter-familiar conflicts of interest in the initial phase of memory problems, b) the hope for (future) therapy and prevention, c) the desire for easier access to experts in memory clinics, d) advance planning, e) stigmatization, as well as, f) suicide as an option to avoid the future loss of self-determination.Conclusions: Current clinical and communication strategies only partly address the perspectives and needs of the affected. A standardized and ethically reflected procedure of the information provided by professionals before testing and afterwards, during disclosure, seems necessary. Further, longitudinal studies are needed to improve our knowledge about the experiences tested persons and family caregivers have with different levels of stigma.

Fear about Alzheimer's disease among Israeli and German laypersons, persons with Mild Neurocognitive Disorder and their relatives: a qualitative study.

OBJECTIVES: Alzheimer's disease (AD), the most common type of dementia, is one of the most feared diseases, obstructing help-seeking, and leading to discrimination. While research interest in fear of developing AD is increasing, little is known about its characterization, triggers, and consequences, especially among different cultures. In this study, we aimed at exploring and characterizing AD fear as experienced by laypersons (LP), persons with Mild Neurocognitive Disorder (MND), and their relatives, in Israel and Germany. DESIGN: A qualitative study using focus groups (FGs) and semi-structured interviews was used. Thematic content analysis was conducted to extract key themes. SETTING: Israeli and German not yet diagnosed people. PARTICIPANTS: The study included a total of 130 participants (63 Israeli and 67 German participants) representing 3 groups: LP (n = 82), persons with MND (n = 28), and relatives of persons with MND (n = 20). RESULTS: Two overarching themes were identified across groups and countries: fear of developing AD and fear of stigmatization. Other types of fear, such as fear of a person with AD, fear about the impact of a diagnosis of AD on family members, fear of becoming a caregiver, and fear of losing one's self-determination because of developing AD, were specific to a group type or country. Different types of fear were awakened by different triggers, and were dealt with different coping strategies.

Addressing ethical challenges of disclosure in dementia prediction: limitations of current guidelines and suggestions to proceed.

BACKGROUND: Biomarker research is gaining increasing attention focusing on the preclinical stages of the disease. Such interest requires special attention for communication and disclosure in clinical contexts. Many countries give dementia a high health policy priority by developing national strategies and by improving guidelines addressing disclosure of a diagnosis; however, risk communication is often neglected. MAIN TEXT: This paper aims to identify the challenges of disclosure in the context of dementia prediction and to find out whether existing clinical guidelines sufficiently address the issues of disclosing a dementia diagnosis and of disclosing the risk of developing dementia in asymptomatic and MCI stage. We will examine clinical guidelines and recommendations of three countries (USA, Canada and Germany) regarding predictive testing and diagnostic disclosure in dementia and Mild Cognitive Impairment (MCI) to show their potentials and limits. This will provide a background to address ethical implications of predictive information and to identify ways how to proceed further. We will start by examining the guidelines and recommendations by focusing on what there is already and what is missing regarding the challenges of disclosing dementia prediction and MCI. Then, we will highlight the novel ethical issues generated by the shift to identify preclinical stages of the disease by biomarkers. We will argue for the need to develop guidelines for disclosing a risk status, which requires different considerations then disclosing a diagnosis of dementia. Finally, we will make some suggestions on how to address the gap and challenges raised by referring to German Stakeholder Conference, which presents us a good starting point to the applicability of involving stakeholders. CONCLUSIONS: This paper underlines the need to develop empirically based guidelines that address the ethical and social strategies for risk communication of dementia prediction by genetic as well as non-genetic biomarkers. According to our analysis, the guidelines do not address the new developments sufficiently. International efforts should aim for specific guidelines on counseling, communicating risk and disclosing results. We argue that guidelines on (risk) disclosure should be developed by involving various stakeholders and should be informed by socio-empirical studies involving laypersons' needs and wishes regarding risk communication.

Does organ selling violate human dignity?

Shortages in the number of donated organs after death and the growing number of end-stage organ failure patients on waiting lists call for looking at alternatives to increase the number of organs that could be used for transplantation purposes. One option that has led to a legal and ethical debate is to have regulated markets in human organs. Opponents of a market in human organs offer different arguments that are mostly founded on contingent factors that can be adjusted. However, some authors have asked the question whether we still have a reason to believe that there is something wrong with offering human organs for sale for transplantation purposes, even if the circumstances under which the practice takes place are improved. One prominent argument regarding this appeals to the notion of human dignity. It is argued that organ selling violates human dignity. This paper presents a systematic discussion of dignity-based arguments in the organ selling debate, and then develops a social account of dignity. It is argued that allowing the practice of organ selling inherently runs the risk of promoting the notion that some persons have less worth than others and that persons have a price, which is incompatible with dignity. The approach is defended against possible objections and it is shown that it can capture the notion that autonomy is linked to human dignity in important ways, while dignity at the same time can constrain the autonomous choices of persons with regards to certain practices.

Reconsidering Kantian arguments against organ selling.

Referring to Kant's arguments addressing the moral relationship between our bodies and ourselves is quite common in contemporary debate about organ selling, although he does not provide us with any specific arguments related to this debate. It is widely argued that the most promising way to show the moral impermissibility of organ selling is to mount an argument on Kantian grounds. This paper asks whether it is possible to argue coherently against organ selling in a Kantian framework. It will be shown that by mounting the argument on Kantian grounds no compelling argument can be given against sale of organs, either because the arguments apply to donation of organs, too, or the arguments are not convincing for other independent reasons. In the first section, it will be argued that donation and selling are not distinguishable in a Kantian framework, since the concern about commodification of the body and its parts shall be raised by both actions. In the second section, some contemporary accounts inspired by Kant will be presented and discussed separately. It will be argued that the reasons for promoting organ donation while arguing against selling clash with each other in an unconvincing way.