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Unveiling the Me in DeMEntia

Monday May 21, 2012

This is Dementia Awareness Week.   With two writer colleagues, Fiona Evans and Romi Jones, I recently completed six months working with people diagnosed with dementia.    We were part of an arts project led by New Writing North and sponsored by Changing Age at NewcastleUniversity and the Alzheimer’s Society, and supported by NewcastleScienceCity. (Click here to read more about the project.)

It is estimated that in 2010 there were 36 million people with Dementia world wide. At present some 5% of the population have Dementia.   The incidence rises with age. 20% of people over 80 develop the disease, while once over 90, the likelihood rises to 30%. As we all live longer the number of persons living with the diagnosis will rise inexorably, year on year. 

As things stand, there is no “magic bullet” or treatment in sight that will cure Alzheimer’s, let alone the other forms of Dementia.    So, as Dr Elaine Perry – a neuroscientist who helped identify the chemistry that led to the present Alzheimer drugs - says, there needs to be a paradigm shift in our society’s attitudes towards Dementia.   We can’t just hope for a cure; we have to focus on finding ways of helping sufferers to live with the disease as creatively and positively as possible. 

For most of us the very word “Dementia” and “Alzheimer’s” makes our blood run cold. Like scared children, if we look at all, we peep sideways through our fingers and pray it won’t happen to us.    The press and the politicians speak of the terrifying costs of the burden of the disease.   But, as Dr Ian Mckeith, Professor of Old Age Psychiatry at Newcastle University, points out, public attention overwhelmingly focuses on the deficits of the disease, not the remaining abilities and presence of the person.

Steven Sabat, author of the illuminating book, The Experience of Alzheimer’s, Life through a Tangled Veil, writes movingly about how the negative expectations of the “healthy” affect those diagnosed with Dementia, confining and distorting their social interactions and exacerbating the effects of the brain damage produced by the disease.

I have been led to wonder increasingly about this. It seems to me that all too often embarrassment and fear in spectators results in a retreat behind template phrases which the “healthy people” who use them would find horribly disorientating and disempowering if roles were reversed and someone dared treat to them in the same way.  

I have often, for instance, watched the tension and discomfort in a visitor’s body language and their stilted attempts at conversation, affect a person with short-term memory issues, making them respond with an appearance of greater confusion than they had demonstrated only moments earlier.    I tried to reflect something of this in the animation, What about Me?, I created with Newcastle animator, Rob Kitchen.

Of course, it is simpler to read the label and follow the scientifically-proven instructions, legal requirements and care packages – but there is an awful lot of misery being suffered under the present regimes of care. We could do so much better - and given the projections, more and more of “us” will one day be joining “them”.    So here’s to Dementia Awareness Week - may both we, the public, and our policy makers all learn from it.

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