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See Me

Ten years ago, it was said that cancer was the biggest fear of older people. It is now dementia (or cognitive impairment). I like to call it forgetfulness.

Can we take the sting out of this dreaded syndrome? Is it at all possible to not let it erode your dignity and rob you of your personhood? I believe that there is hope… not in more research, but in more and more people “coming out” and talking about how it can be different.

Somehow we are trapped in a de cit discourse – I have spoken about this before. What I nd interesting is that many people get upset when I suggest a different narrative. It is as if they passionately cling to the idea of horror and suffering and the war metaphors. Are we really hardwired to this kind of dementia pornography, addicted to seeing only the most graphic pictures of distorted faces and crumpled bodies? The media is filled with these images – which has in itself brainwashed us to believe that, THAT is dementia.

A few tears ago I attended the “Dementia beyond drugs” training with Dr. Al Power. We were asked to give him an example of a so-called “dif cult” resident. Many hands were raised, and Al decided on the example of Mr G, whom I happened to know quite well. Mr G lived with dementia, has been in this particular Care Centre for a number of years, and was causing havoc. The big man that he was, the nurses were scared of him. If he grabbed you by the arm, he would easily drag you through the whole centre. Unable to speak, he would hit, shout, and literally run with a poor nurse in tow. When I first met him, I was intrigued. I asked the staff to tell me about him, and all I could get was that he use to live in the village and that he moved in a few months ago. His wife still lived in the village. He was described as an “aggressive and very dif cult” man. That was about all they knew about him.

Dr Power presented the “Domains of Well-Being” training – a process of exploring the seven domains of well-being. The staff were tasked with going back to their Care Centre, and building a map of the seven domains of well-being for Mr G. Armed with a big poster, coloured pens and magazines for pictures, they set off trying to find what constitutes the domains of well-being for Mr G. What would his sense of identity be, where would he nd meaning, joy, connectedness? What makes him feel secure? What autonomy does he have? And what are the areas of growth for him? With the help of his wife, the built a map of well-being.

A fascinating thing happened – without any change in his routine or changing the way in which he was treated, Mr G’s behaviour almost immediately started changing. He was less agitated, walked slower, and did not hit and punch or lash out at staff. We were all astounded, and I wrote to tell Al Power this story. It felt like a miracle happened!

What was this about? Simple! The staff started seeing Mr G not as “a dif cult dementia patient”, but as a father of three, provincial rugby player, keen gardener, and doting husband. They changed nothing in the way that they “treated” – they simply saw him for the human being that he was. They dropped the “medical gaze” and saw the person. And Mr G became that person again.

Everyone reeled at this story. So simple, so powerful. Beauty is in the eye of the beholder takes on a whole different meaning suddenly…the Amanda Wearing poem asks “What do you see Nurses? What do you see? When you look at me – do you see a crabbed old woman, or do you see me…?” See the person, not the disease.

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