DEMENTIA, FEMINIST PHENOMENOLOGY OF THE BODY AND MEDICAL ETHICS

The case of dementia evokes philosophically pertinent questions as regards selfhood, personhood and the role of the body for what we can be or do, and for how we engage with others and the world. For example: In what way is the person with dementia the same person, before and after the onset of the disease, and what does it mean to be a person? What role should be given to so-called ‘bodily memories’ in personhood discussions, i.e. memories of how to engage in particular activities, with one’s body, that may remain when one has lost much linguistic capacities? Or, how can being given an Alzheimer’s diagnosis affect an individual’s experience of her or his own existence and co-existence with others, and how may symptoms of this illness affect her or his way of engaging with others and the world? Within this subprogram, such issues are examined phenomenologically.

Dementia also evokes questions about our attitudes, beliefs and norms regarding aging bodies, including assumptions of gendered ways of aging and gendered experiences of aging. How, for example, do men experience and negotiate beliefs and norms about masculinity in late life when they take care of their partners with dementia, at home?

Dementia research at this centre focuses not so much on what the subject can no longer do, but on the remaining abilities of the person with dementia. It stresses the importance of relationships and interaction in order to be able to understand and facilitate the possibilities of persons with this illness. Again, this evokes philosophical and ethical questions, such as: How can selfhood be strengthened in interaction with others and what conception of the self is needed in order to do justice to a thoroughly relation understanding of human ways of being in the world, together with others? These issues are important to address from within phenomenology of the body, feminist philosophy and medical ethics.

Feminist Phenomenology of the Body and Medical Ethics

Phenomenology and much feminist theory and philosophy investigate experiences and affirm the role of embodiment for human subjective and intersubjective meaning-making. Furthermore, both unveil and scrutinize taken-for-granted and in this sense ‘hidden’ assumptions, beliefs and norms that we live by, that we strengthen by repeated actions and that we also sometimes resist, challenge and question. Whereas there is a growing area of feminist phenomenology dealing with concrete issues of embodiment and situatedness, surprisingly little work focuses on topics/phenomena related to medicine and health. Whereas phenomenologists have made valuable contributions to the analysis of the nature of medicine, the meaning of illness and health as well as clinical practice, there have been comparably few analyses of such issues that combine insights from feminist theory and philosophy with phenomenology.

Feminist Philosophy, Phenomenology of the Body and Medical Ethics: Aging and Dementia is a strand of research based on the conviction that facticities of human life, such as aging, sex, health, illness and death benefit from being examined in the light of feminist theory and phenomenology. More and more often, these facticities are managed in medicine, through medical treatment and medical technology. Dementia care is one such example. This strand of research is based on the conviction that we need to examine embodiment in order to understand experiences of aging, health or illness. Importantly, the conception of the body at work is that of the lived body. In contrast to conceptions of the material body as primarily a receiver of various stimuli from the “outside” world and the mind as the translator of these stimuli and the controller of action, the lived body is a mind-body unity, acting and experiencing in a specific situation. It is our lived relationship, as embodied beings, to a world immersed in meaning that we constantly interpret and make meaningful to ourselves through interaction with others.

While holding on to the conception of the body as a mode of intentionality and the subject’s grasp of the world, this strand of research also examine how cultural, historical and individual differences can matter for the subject’s bodily being in the world together with others. There is, in other words, a thoroughly relational understanding of human existence and co-existence in this strand of research. For dementia research, this means that it is not enough to focus on the self, either as a patient, a close relative or professional in order to understand phenomena such as lived experiences of aging, health or illness. This can be contrasted with philosophical work that conceptualizes the self primarily as independent from other selves.

Scholars working in this strand of research investigate how the relation between phenomenology and feminism can be understood in a fruitful and mutually enriching way and
how phenomenon such as aging, health and illness can and does inform feminist phenomenology as a theoretical framework. Furthermore, phenomenology of the body and feminist philosophy are used in the elaboration of medical/care ethics of relevance for dementia care.

Three research projects, that exemplify this profile, start in Autumn 2011 and Spring 2012:

(1) A Relational Self and Relational Autonomy in Dementia Care. The aim of this project is to examine the relation between the concepts of personhood and selfhood; its aim is also to develop a thoroughly relational conception of the self. Whereas discussions of personhood often have focused on a set of criteria that need to be met if someone can be seen as the same person over time, selfhood discussions have been more prone to examine experiences of being a self, self-conceptions and embodied selfhood. Much philosophical analysis of selfhood has also focused on the individual. This, however, is not the only possible starting-point. Recent feminist phenomenological work, among others, suggests that it is useful to examine the shared space in between self and other in order better to understand how self and other are expressed and emerge in relation to one another (see for example Käll 2009). We see this as a promising approach in order to elaborate a relational conception of the self, and a relational conception of autonomy, that support the overarching concern of the Dementia program: to examine relationships and interaction in order to be able to understand and facilitate the possibilities of persons with this illness.

(2) Sharing Music - Musical Self in Dementia. Starting in the growing evidence that appreciation of music can outlast many other faculties, this project examines the phenomenology of sharing music in dementia care. We explore this sharing as a way to create an expressive shared space between patients, relatives and professionals, where the person with dementia may express her- or himself, in relation with others, beyond words. We also discuss whether a ‘residual musicality’ of the person with dementia may constitute a ‘musical self’ (compare Pickles and Jones 2006), and we examine what such a self means in comparison to more common conceptions of selfhood in philosophical traditions.

(3) Sharing in Dementia Care: A Phenomenological Ethics. The aim of this project is to philosophically examine sharing as a way to understand the relation between self and the other. The project starts in an analysis of whether and how pain can be shared in other health care contexts, before examining the particular cases of how the sometimes painful experience of losing memories can be share, and how physical pain may be shared in dementia care (though physical pain is not what dementia commonly is associated with). It also examines ethical implications of these cases of sharing. The project examines whether and how abilities to engage in this sharing of painful experiences and, possibly, pain can be developed on the part of health care professionals.
 

Page responsible: anna.schenell@liu.se
Last updated: 2012-06-28