“just think of the families enduring the unspeakable pain of watching loved ones slipping away”

(David Cameron, #G7dementia legacy event)

There has been much discussion of the word ‘dementia’ itself is stigmatising.

Kate Swaffer, advocate living well with dementia, argues in the webinar below that dementia is probably where cancer was at many years ago when Kate used to be a nurse, in terms of stigma.

Dr Peter Whitehouse rightly pointed about there is a drive at the moment in the psychiatry classification to rename “dementia” as a “major neurocognitive disorder.”

But would a rose by any other name smell as sweet?

I myself have written about the nature of the “war against dementia“.

But the war theme does have major problems.

Dr Richard Taylor is another leading member of the ‘Dementia Alliance International’, living well with dementia.

‘Let’s ignore the people who are dying in this war against dementia until the war is won when we can build another country” was Richard’s comment.

Richard, I feel, is absolutely right to think about what the nature of the world we are striving to head towards is. Is this a world where there is nobody living with dementia?

Richard points out there are differences between what the cure might be. One option is a ‘vaccine against dementia’.

One wonders what quite form such a treatment will take. Having a complete genetic analysis of someone might lead to some sort of genetic therapy in a brave new world, but how would society take to something some may feel borders on ‘eugenics’?

It’s well recognised that after decades of drug development none of the drugs for which NICE has issued guidance slow down progression of disease, but can help with symptoms for a few months.

“Funding for dementia is much easier, when you instil fear, though I’m completely ashamed to report it” according to Romina Olivierio an independent consultant and advocate.

What I feel has happened is this.

During the 1890s, the Russian physiologist Ivan Pavlov was looking at salivation in dogs in response to being fed, when he noticed that his dogs would begin to salivate whenever he entered the room, even when he was not bringing them food. This is known as “conditioning”.

Using words such as “horrific”, “threatening” and “horrible” with the word “dementia” persistently in the media means that whenever the word “dementia” is used people have a very negative caricature of dementia automatically.

After Pavlov’s dog was conditioned to salivate at the sound of a bell, it eventually stopped salivating to the bell after the bell had been sounded repeatedly but no food came.

So if we stop using such negative words around the use of the word “dementia”, the negative impact of the word “dementia” itself will dissipate.

The notion of “living well with dementia” was never intended to depict a world of paradise or to airbrush any whiff of suffering with a dementia but is supposed to convey an approach where people who’ve received a diagnosis are actually helped.

Two things might happen when someone receives a diagnosis of dementia. One option is that you become written off, what Kate Swaffer has termed “prescribed disengagement” (this article contains the link to Kate’s original blogpost on her excellent blog.)

Another approach is that reasonable adjustments can be made for a person living with dementia, like a memory aid or adequate environmental signage, in the same way that they will be lawfully made for a person living with a physical disability.

In this fight for living well with dementia, we might be able to turn a negative into a positive. My overwhelming concern is that by ‘fixating‘ on a cure for dementia, we ignore people in the present currently trying to live well with dementia.