Do Those Diagnosed With Alzheimer’s Disease Lose Their Souls? Whitehead and Stengers on Persons, Propositions and the Soul

An interview with Michael Halewood, author of Do Those Diagnosed With Alzheimer’s Disease Lose Their Souls? Whitehead and Stengers on Persons, Propositions and the Soul, shortlisted for The Sociological Review Award for Outstanding Scholarship 2016.

What is Alzheimer’s Disease?

As soon as you start trying to define Alzheimer’s Disease, you run into problems. If it is classed as a form of “dementia” then the legacy of this word starts to bite. The word “dementia” comes from two Latin terms, “mens”, and “de” which here mean, respectively, “mind” and “away from”. In this sense, to have dementia implies losing one’s mind. With regard to Alzheimer’s Disease, specifically, there is no definitive diagnosis until after death. A person may be given a “possible” or “probable” diagnosis when they are alive but it is only during a post-mortem that evidence of the build-up of toxic proteins (amyloid deposits) can be confirmed. These form plaques which damage or kill the surrounding cells in the brain. It is these which are taken to be the hallmark of Alzheimer’s Disease.

What assumptions underlie these commonsense and biomedical views of Alzheimer’s Disease?

It seems to me that there are two main assumptions. From family experience (my father was “diagnosed” with Alzheimer’s Disease in 2010), it appears that there is a reluctance, initially, to state that someone has Alzheimer’s Disease. This is because such a diagnosis marks a watershed. As with other forms of “dementia”, the person involved is envisaged to be on a remorseless path of disintegration. They will not get better only worse. Their brain is deteriorating remorselessly, and so are their cognitive capacities, and their mind. By contrast, although a diagnosis of cancer can be distressing, nowadays we are encouraged to “Stand Up to Cancer”; to engage in a battle which could be won. There seems to be no such hope with Alzheimer’s Disease. The diagnosed person is “lost to us”, and the situation will only get worse. As a result, the “commonsense” and “biomedical” views reinforce each other.

How can Whitehead and Stengers help us rethink language and identity?

After my father’s diagnosis, I read some of the literature on Alzheimer’s Disease, both scientific and offering support to families. Throughout all these documents, there was a quiet insistence upon this notion of the “loss” of the core of the person. I started thinking about what or who exactly was supposed to be “lost” in cases of Alzheimer’s Disease. The only two options which seemed open were the “commonsense” or the “biomedical” understanding of Alzheimer’s Disease. However, these seemed to be two sides of the same coin and, more importantly perhaps, it was never made clear quite what was being lost.

For example, difficulties with language are often taken as symptoms of Alzheimer’s Disease: forgetting words, problems with constructing sentences; repetition. Language becomes a marker for the loss of brain function. This is a rather “unsociological” response, as language (the social element) is reduced to direct outcome of the biological. At the same time, to ignore the “medical” aspect and to try to develop a “purely sociological” analysis and insist that the self, subject and identity, including those diagnosed with Alzheimer’s Disease, only comes from the interrelations of groups and individuals does not help get to the heart of the matter. Sociologists are used to seeing identity, the self, or subjectivity as something which is constructed, which is separate from the biological. However, when thinking about Alzheimer’s Disease, such arguments do not seem able to fully explain what is going on. Yet, to give up and merely accept the rather discouraging biomedical view did not seem helpful either.

As a result, in my article, I tried to use the work of Whitehead and Stengers to approach the question in a different way, one which allowed for the social and biomedical elements, but was not constrained by them.

One main move was the decision to use the term “soul” as a marker for the core of a person, for what was being lost. There is no religious or theological element to this. Rather, it was intended as a placeholder for what is at stake in this question. Throughout his work, Whitehead uses the term “soul” not to refer to some enduring (or immortal) entity within us but as something which marks the enjoyment of possibilities which characterise an important element of human life. Stengers builds on this notion by looking at the role of language as expressing such enjoyment of possibilities. The advantage of their approaches, as I see it, is that they are able to retain a notion of the “core” of a person, including those diagnosed with Alzheimer’s disease, which is not based on either purely social interrelations or an enduring physical entity. Yet, it retains aspects of both. I hope that the readings of Whitehead and Stengers that I offer enables the development of an approach which means that those diagnosed with Alzheimer’s are not lost, different, or other to “us”.

Does this have implications how we think about diseases other than Alzheimer’s?

As Michael Schillmeier’s work has made clear to me, how we think about Alzheimer’s Disease, dementia and perhaps other diseases such as Huntington’s, say quite a lot about us and our society. For example, when researching Alzheimer’s Disease what we are actually looking at is one aspect of possible human experience, one among many. However, there is a tendency to view those diagnosed with Alzheimer’s Disease as “different to us”, as others, as lost to us. There is a link here to the theoretical and practical treatments of madness throughout history, as analysed by Foucault. A healthy mind or healthy reason are linked to a supposedly healthy individual. Such a view is established and supported by differentiating such individuals from those who are not so “healthy”. It seems to me that there is something like this going on in discussions of Alzheimer’s Disease. There is a need to develops ways of thinking and acting which can incorporate the wide range of experiences of humans without excluding some, or designating them as “lost to us”.

Michael Halewood is a Senior Lecturer in the Department of Sociology at the University of Essex. He is the author of two monographs: A. N. Whitehead and Social Theory. Tracing a Culture of Thought (2011) and Rethinking the Social through Durkheim, Weber, Marx and Whitehead (2014).

Originally posted 9th October 2017.

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