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“They all have dementia!”

The loss of power when being diagnosed with dementia is a very real and terrifying event for most people. Suddenly you are no longer in charge of your own body – it now has a status that you cannot know or control. It is like being invaded by an alien force, never knowing what is going to happen next. The complexity of medical knowledge becomes the sole propriety of experts and specialists, rendering the intuitive being of one’s own body of little regard. The more sophisticated the research, the more jargon that can be used, and the more the individual is usurped into the medical paradigm. This powerful force, whilst providing many forms of relief, can also serve to make slaves of those who do not have the acumen to resist. Most people become completely powerless, hand over their autonomy and become puppets to medication, diagnostic categorisation and nursing interventions.

The medical gaze, a term coined by Foucault, becomes so powerful that it takes on an almost religious, God-like power, changing the very essence of our Being, and relegating us to the “frail-cares” of society. This externally imposed power and knowledge leaves the average person reeling from shock, feeling almost dehumanised. Add to this the pictures in mainstream and social media of living with dementia, and one could think that you have been possessed by an evil force, leaving you completely powerless.

The stigma of this medicalisation of ageing and a different being-in-the-world creates a dementia discourse entirely focussed on disease, leaving those living with forgetfulness on the outskirts of society, almost as if they are contagious.

Just yesterday I visited another “frail care” where the Health Care Manager tells me “Oh everyone here has some form of dementia”. I was intrigued – asking if they only house people who have been diagnosed with the syndrome. “No”, she said, “but you know what it is like, they all have a form of dementia in any case. Lewy Body, Alzheimer’s, you know, some form of dementia”. Walking through the centre it broke my heart into a thousand pieces seeing people who are anything but demented, and yet they are seen and treated as such. No agency or autonomy. Lots of ‘activities’ to keep them busy…. When I suggested that the Elders are consulted in the process of selecting fabrics for the new curtains, I could see the total disbelief in her eyes. “They have dementia!” she exclaimed, almost exasperated by my ridiculous suggestion. “We must just bring in bright colours, and also paint the walls in bright colours”. I wanted to weep. Forty Elders, beautiful human beings, have been written off, having become a project to be entertained with building blocks, sing-a-longs and crafts.

After so many years of fighting this system, I want to scream. I want to shake her like a ragdoll until her stuffing falls out. There is NOTHING that I can say that will change her mind – she is the expert. “They” are her objects in need of “care”.

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