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Dementia and Dementers

June 20, 2008

Here comes a rant, be warned.

When I first stumbled upon the work of John Killick and Kate Allan in  creativity and dementia care, the first thing I learned from them was never never never to refer to someone with Alzheimer’s as ‘senile’ or ‘demented’.

In Holland where I live, there is an even more insidious term used, ‘dementerende’, which means ‘dementing’  or ‘dementer’ (which has its own associations from Harry Potter!, ‘dementor’)- in the process of getting demented. 

Otherwise intelligent, compassionate people across all the disciplines and organisations involved with dementia care use this unconsciously without realizing how ultimately degrading and outright damaging it is. 

Once someone has been diagnosed with dementia it is almost as if they’ve lost the right to define their own identity,  (paraphrased from ‘Communication and the Care of people with Dementia’, Killick and Allan). 

Repeatedly referring to someone as a ‘dementer’ ( I have a one page brochure on ‘Activities for Dementers’ here from the national Alzheimer Non-Profit which uses the term 5 times, interspersed with ‘patient’), is defining them exclusively by their illness. It effectively wipes away any trace of personhood. On the other hand if you simply say, ‘person with dementia’, as you would say ‘person with cancer’ or any other disease, you address the wholeness of the person first, and the illness second. Or if you are a doctor who must use the term a lot, then PWD (person with dementia) , or Dutch MMD  would work too.

This depersonalizing of people with dementia is a grave violation of human rights. It makes possible situations like the one I heard of near here, where a beautifully situated waterside psychiatric nursing home is getting gutted, the residents moved to a less idyllic location, and apartments are being built because, ‘The patients don’t know the difference anyway and can’t appreciate the scenery’. Need I say more?

 

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2 Responses to “Dementia and Dementers”

  1. Sheilah Says:

    I can confirm that people defined as ‘dementing’ have amazing hidden beauty – that can only be called upon by an open heart. As an occupational therapist I worked with elderly people in continuing care and was honoured to be shown, even if fleetingly, a door held ajar into pure mind. One man who wandered round the hospital all day talking “spaghetti talk” incessantly, sat with me briefly to look at photographic scenes of New Zealand (our home country)and suddenly, pointing to the famous autumn scene of Arrowtown, he said in wonder, “I remember that place. I used to live near there.” Then the ‘door’ closed again. But there had been magic at work. I had many an experience like that, but was never believed by nursing or medical staff. I believe you have to make it safe enough for these wonderful people to open their mind’s door to thenselves – and to you.

  2. szoutewelle Says:

    Thank you Sheilah. Someone has described dementia as a journey ‘from mind to heart’, and you have captured the essence of what this means.


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