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February 6, 2008

Dementia: (from Latin de- "apart, away" + mens (genitive mentis) "mind")

bjork_reacTable_630px.jpg

In my line of work I see a lot of people with what is usually called dementia. I find it the most fascinating of diseases; so little is known about it, and the causes are incredibly varied. What I do know from working with people with dementia is that they seem to be happy enough once they are in the full grip of the disease---of course, that is no umbrella statement (a lot is unsaid, or unable to be said), but by and large, they seem able to occupy themselves, on a journey that engrosses them wholly and fascinates them endlessly.

One of my clients who has the worst dementia I have seen is unable to carry out just about any daily task. He can eat the food you prepare, but sometimes does not know how to use a spoon, or does not understand what it is to eat, or that he needs to sit down, or even what a chair is. At least, I don't think he does. You never can tell. Sometimes I think they just like to prolong engagement---I really don't know for sure. What I do know is that he is forever straightening things; napkins, books, cups of water, rugs. Everything has to be in shape and order and this seems very important to him. He's been known to hit care workers, but I have never had this problem with him. I trust him completely and I always make the time to sit down with him and have a cup of tea and to listen to what he has to say. A lot of it doesn't make sense, but he still knows so much! He knows that the care aides are only trying to help, but he also knows that they don't help when they make them do things he doesn't want to. He knows that I am not scared of him and that I will not force him to do things. And he knows to have a sense of humour; he laughs at his own jokes and engages very politely when you take the time to talk to him. But it is his obsession with putting things right, and straight, that fascinates me the most. What is going on in the brain there, what ordering principles are at hand, and what does it all mean, anyway?

A family relative had dementia too (compounded by Parkinson's, which is a tragic combination) and his son spent a lot of time talking to him about things, and in the end, came to understand that his dad was on some sort of journey. And not just a metaphorical one; he talked about going up through corridors, down stairs, through this, that and the other. It was like his mind had become a house, and he was navigating it physically rather than eidetically. He too, had the same fascination with form and order and shapes.

I would like to do further studies in dementia, particularly the process of writing autobiography, or life books for the person with dementia. There is still a lot of coherence that can be gleaned from their conversation, and by talking additionally with family and friends, you can put together a picture of life which can be recorded in writing, photography, video, audio or website. I'm reading Emergence by Stephen Johnson and would like to take some courses at the Alzheimers Association, but my new year's resolution forbids it; no active self-improvement (but the book is only incidental self-improvement; I've wanted to read it for a long time)

In some ways, theories of emergence and adaptive learning make me think of the crazy device Bjork was seen using at the Big Day Out. I wasn't there (I love the Aracade Fire too much to see them for the first time at a BDO) but Paddy told me all about it and sent me this link. http://www.wired.com/entertainment/music/news/2007/08/bjork_reacTable This machine represents in many ways, how I suspect the the brain works, demented or not. I think this could be a new direction for me, but I'm not going to do anything active about it this year. Just read books that interest me anyway and remember that this year, it's all about my writing and not about careers and professions. The harder I chase those things, the further they slip away, anyhow.

Posted by linda at February 6, 2008 3:04 PM

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