DIAMetric

By Mark Butler

March 11th, 2015

The Distraction of The Test

The worried-well have much to love about “Still Alice”.  Of course there is the nuanced, make-up free, performance of Julianne Moore to enjoy, if that is your thing.  But more importantly there is The Test.

There is a scene where The Test is used to establish whether our high-achieving heroine is displaying signs of early-onset dementia.  Virtually every self-reflective critic has said how they had trouble meeting the stipulations of The Test in the tone of a slightly awkward laugh, which seeks confirmation from others. It is the sort of conspiratorial mixture of incredulity at its level of difficulty (“Wow, the bar really is set so high I might fail to clear it”) and empathy with the poor woman who has to be put through it when she already “clearly” is showing what we all know to be the signs of dementia, don’t we?

The Test is an important cultural moment.  There will, as a direct result, be a huge demand from those middle-class worried–well, who will have reflected tearfully on themselves and their dependents throughout the film, for The Test – even though early onset dementia is rare and they have been in the grips of a work of fiction.

Here we see the limits of “awareness-raising” which the advocacy organisations (and now government) have sold to us as an inherently good thing.  It underpins the Dementia Friends project, set to triple in size in England without any worthwhile evaluation.  It is built into the fantasy that lies behind every dementia-friendly community initiative. It is a substitute for real action which will improve the world for people with dementia in any meaningful way.

Awareness-raising is not a useful thing in itself.  It is a myth that having some vague awareness of something important, where real knowledge is needed, adds to the value of society. With "Still Alice” raising awareness of early-onset means prompting needless anxiety in people who felt they were on the slippery slope to dementia anyway, albeit in 30 years’ time. 

What is actually needed are better services for those who actually need them and real knowledge-building, especially in health professionals, with whom most people interact at some point each year.  The focus needs to be on what dementia means to real people as individuals and families in their own circumstances and what can as a result be done. 

The worried-well will now get in the way, feeling entitled to access The Test, with the impression that this is something they should be on the look-out for here, when in truth there are many common diseases which are treatable, if found early enough, where the real effort is needed in the middle-aged.  There is no need, even if an Oscar says otherwise, for us to get too worried about early-onset dementia in the way the film suggests.

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