The ‘New Dementia’: Contextualizing Emerging Socio-Cultural and Ethical Questions in Dementia Research

Published: Tuesday, August 6, 2019

Emma Conway, McMaster Health, Aging & Society MA student, shares her experience from TrentAging 2019.

Thursday, May 30th 2019
By: Emma Conway

I was thrilled to be provided with the opportunity to attend TrentAging2019: Take Back Aging – Power, Critique, and Imagination. This joint international conference of the North American and European Networks in Aging Studies was held at the Trent Centre for Aging and Society in beautiful Peterborough, Ontario. Researchers, writers, and scholars from various disciplines presented diverse approaches to critical aging studies – and I was challenged to think creatively about the meanings and representations of aging, consider different cultural perspectives, and think critically about power relationships.

One panel that I attended, the ‘New Dementia’: Contextualizing Emerging Socio-Cultural and Ethical Questions in Dementia Research, showcased the commitment of TrentAging2019 to embody the theme “Take Back Aging”. This panel encompassed presentations from very diverse perspectives – Annette Leibing from the Université de Montréal, Canada, Silke Schicktanz from University Medical Center Göttingen in Germany, and Karla Cristina Giacomin from the Centro de Pesquisas René Rachou in Brazil. The Discussant Renee Beard from the College of the Holy Cross in the United States engaged the audience in a critical discussion surrounding the presented North American, German, and Brazilian contexts of the experience of dementia. As a researcher interested in the perceptions of dementia, as well as the lived experiences of dementia, I was especially interested to hear how researchers are working in the field globally.

The session began with situating dementia research in the concept of the ‘New Dementia’. This idea of a ‘New Dementia’ emerges from medical advancements in early detection and intervention, biomarkers, and the inclusion of mild cognitive impairment diagnoses as a risk factor for developing Alzheimer’s disease and other dementias. As Annette Leibing described, dementia has moved from being considered a disease of the brain to being considered a disease of the body, with behavioural and psychological symptoms of dementia now being involved in diagnosis. Leibing also described a shift towards prevention within the idea of ‘New Dementia’, where cardiovascular risk factors as well as the merging of vascular dementia and Alzheimer’s disease have contributed to the identification of nine modifiable risk factors. Thus, the so-called “problem of dementia” is recognized much earlier in the life course with early prevention, detection, and intervention.

Perhaps the most interesting portion of the session was the various cultural contexts of prevention. There are striking differences in the media representations of dementia prevention, where European countries are more focused on individual lifestyle factors of prevention (the notion of the ‘healthy brain’), and North American countries more frequently present clinical trials and pharmaceutical intervention. Silke Schicktanz highlighted that this framing does indeed impact the ways in which dementia is experienced, especially in terms of the perceived importance of prevention. It was further emphasized that there are ethical considerations when disclosing test results that may indicate increased risks of developing dementia. In some cases it may lead to better prevention, advanced care planning, and healthcare, but it also tends to increase distress and stigmatize dementia. Thus, it is argued that the prevention paradigm of dementia is linked with a biomedical framework of prediction, which neglects social risks and wrongly ascribes responsibility. Schicktanz argues that researchers must consider family, social, and state responsibility especially in terms of access to prevention.

In considering a different cultural context, Karla Cristina Giacomin presented Dementia as a public health issue in Brazil. With a rapidly aging population, Giacomin identified that there is a strong bioethical concern with aging due to a perceived loss of autonomy and a responsibility of the health care system to provide preventative actions and adequate care in Brazil. Moreover, Giacomin argued that the traditional model of healthcare in this context wrongly reduces disability to a problem of the individual. The cultural fear of dementia is seen as leading to stigma and exclusion, which is amplified in the Brazilian media with headlines linking dementia to a “tsunami”, “epidemic”, and “burden”. Thus, Giacomin presented dementia as a paradigmatic challenge, which places cognitive paradigms against cultural determinism, biomedicine against personhood, and ‘hard’ science against ‘soft’ science.

This session was powerful, engaging, and challenged me to think deeply about the role of culture in the experience of dementia. As a student and researcher interested in the experience of dementia, as well as the study of dementia, I walked away from the session with new insights and a different perspective on a wide variety of cultural representations of dementia. I am very grateful to have had the opportunity to attend TrentAging2019, and I would like to thank the Department of Health, Aging and Society and the Gilbrea Centre for Studies in Aging at McMaster University for supporting my attendance.