Let's Talk Dementia

The Aging and Social Change conference provided a lot of food for thought. One presentation that stood out was about PRECARITY and the vulnerability of older people. The social and political changes globally are exposing more and more older people to neglect and abuse. With more older people being connected to social media and the digital world, scams that defraud them are at the order of the day. The spreading of fear via fake news is now a reality for more and more older people who quite often do not know the dubious sources of such news.

Butler (2006) says about precarity that many older people are at the mercy of being deconstructed as ‘devalued’ subjects, especially in our approach to what we perceive as “their needs”. This is an interesting point, and was popularised by Foucault’s “medical gaze”. How do we “see” older people? Looking at the term precarious, it is a condition where one is ‘vulnerable to the will or decision of others’. This stopped me in my tracks, thinking back on my own working life that has been so focussed on screenings and assessments, which while I still believe in their importance, I now wonder at their execution and the impact they have on Elders.

Any assessment or screening comes with power struggles and an imbalance between the assessor and the assessed. We all know what it feels like to be measured by a school or university system, or to do a driver’s test. Mostly there is a feeling of huge anxiety and stress, and more than often we leave the examination room feeling like we not only might HAVE failed, but often that we ARE indeed a total failure. In geriatric assessments, the focus is usually only on decline, what you can no longer do rather than on your strengths. The very system of assessment and screening leaves one acutely aware of failure, loss and inadequacy. Nothing can be more daunting and frightening than a Mini Mental or Cognitive screening to leave a person feeling completely hopeless, lost, disconnected. The situatedness of this process leaves very little room for any discourse of growth or potential, and one is suddenly reduced to the status of OBJECT.

We are interrelated, connected, contextual individuals within hybrid structures of social spheres where our Being-in-the-world is performed with intricate subtlety that are shaped like the waves in the ocean, crashing, folding, retreating in ever perfect beauty, generated and fuelled by a force much bigger than us. Our multi-layered, textural complexity as human beings cannot and should not ever be reduced to data, for then we are at risk of becoming mere objects of observation, reduced to statistics in a scientific framework. And if we do not neatly fit into at least the center of that framework, we are given the disease label: dementia, ADHD, bipolar, abnormal. And suddenly, the way the world sees us will change. We are now an object to be studied, a “case” to be examined, a file in a cabinet. Our own thinking space is now infiltrated, contaminated by the label that some “expert” bestowed on us. And we inevitably start acting our label and losing our identity. This label changes our discourse and the way that we see ourselves. We are seen as being ‘bad’ as we do not comply with what is commonly prescribed as “successful ageing”. We are a failure, a burden, a problem, something that many older people act out with great gusto!

God help us that we should be afforded the label of being demented…

The precarious position of being OLD leaves many of us at the mercy of the so-called experts, mostly with good intentions, who make it their business (literally) to label us in order to better “care for us”. Think about it: “our assessment shows that your Mother needs to move to a Care Home/must go on this medication/needs this help”. How often do we consider the most important person at the center of our expert assessment? Not often enough. We have become frighteningly “sophisticated” in our medical gaze. Or rather, we have become barbarically disconnected from the sacredness of the Human Spirit (Desmond Tutu). Mostly because we have become more and more disconnected from empathy.

True empathy (in my opinion) is to feel the vulnerability of others. It is not something that we can teach (I have said this often). We learn empathy by spending quality time with others who are different from us, older or younger than us, more or less fortunate than us. We do not learn empathy on Facebook or in our echo-chambers of friends who are all more or less like us, having lived a life of white privilege and similar social standing. It requires reaching out, spending time, being present, listening, honouring the silences. That is when we begin to feel. And next time we connect with someone in a similar position, we will recognise that feeling, and we will act in a different manner. The person will no longer be just an object of our observation, but a subject that we want to connect with, and the vulnerable person will have agency thanks to our empathy. The way we feel when we look at a homeless person, a person with severe memory loss, the prisoner, will tell us what our empathy barometer shows.

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