Dementia is usually considered a syndrome mainly attributed to older people that is, furthermore, not curable. However, over the last years it has become apparent that a third of dementia cases might be prevented by reducing certain risk factors. The aim of our project “Optimizing the Aging Brain? Situating Ethical Aspects of Dementia Prevention” (BEAD) is to identify new intricacies arising from dementia prevention and to dissect this novel understanding with regard to its underlying assumptions and norms. We further seek to analyze new dementia in its social, ethical, epistemological and technology-related implications by comparing the ramifications in three countries: Germany, Canada and Switzerland.
The emphasis of this project lies on understanding dementia prevention as a complex issue that must be addressed in a context-sensitive way. Not all risks can be attributed as solely the responsibility of the individual nor as a scientific problem, as it can be seen from risk factors such as educational inequality and social isolation. As a consequence, the analysis of risk factors might be less successful or even useless if structural factors are not taken into consideration. It becomes clear from this that dementia prevention must encompass the views of a wide range of people, not just a few experts – such as ethicists and natural scientists –, but also people involved with patient groups, political institutions, insurance agencies, etc. Therefore, we decided to adopt a comparative, qualitative empirical stakeholder interview study including scientists, technologists and public stakeholders. In addition, we carry out a comparative discourse analysis of significant public and policy documents to complement our findings (e.g., media coverage, policy guidelines). Moreover, we seek to unravel the situatedness of prevention-related factors in a hitherto predominantly medical understanding of dementia by conducting in-depth ethnographic research in a variety of settings.
It is also clear that new developments in medicine and technology, such as early diagnosis and the improvement of medical treatment, can have an impact on preventive measures and lifestyle choices taken by individuals. Therefore, reactions to these measures can vary depending on personal circumstances and socio-cultural environments. Such new technologies of “self-optimization” – that are predicted to play a key role in the new dementia – are also distributed, accepted and integrated differently in different national contexts. We believe that related ethical issues are also highly context-dependent, an often-neglected perspective in bioethics.
Our objective is to provide a nuanced and empirically informed analysis of dementia prevention. In order to achieve this, the project’s methodology follows a combination of approaches that in its complementarity should not only map the current changes, but also critically appraise present understandings of dementia prevention. The project, therefore, works on
- a comparative, qualitative empirical stakeholder interview study including scientists, technologists and public stakeholders,
- a comparative discourse analysis of significant public and policy documents (e.g., media coverage, policy guidelines),
- focused ethnographies that capture perspectives from everyday clinical and community life,
- an integrative analysis of the epistemological, ethical, and social implications,
- use of interdisciplinary methodologies (discourse analysis, ethnography, expert interviews from the perspectives of (bio-)ethics, medical anthropology, and philosophy) to develop a framework for ethical, social and policy aspects,
- tailored knowledge translations for different stakeholders (the lay public, public stakeholders) for increasing understanding of the new dementia prevention.