“the truth is dementia now stands alongside cancer as one of the greatest enemies of humanity”
“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.
I think this is true of much discussion about medical conditions. Some of the words around prematurity are the same. I dislike “miracle” “weighing not even a bag of sugar” that sort of language isn’t helpful. Babies weighing less than 2lb aren’t miracles. I also dislike “fighter” these babies aren’t fighting, they are babies being treated in a medical setting. They may have been miracles once, but now it isn’t a miracle, it’s sound medical and family centred care practice that helps these babies survive and thrive.
I feel there needs to be a much broader discussion about how we talk about medical conditions, disability and living well with all sorts of conditions.
Thank you for this important blog post.
Great Blog Shibley.
As you know – I spend a good deal of time talking about living well with dementia, and as you also know there are people who for a variety of reasons are uncomfortable and sometimes actively hostile to the idea that people can live well.
My experience has been that the most common manifestation of this comes from people who have been through the mill as a carer of someone with dementia. In my experience the walls tend to come up when people feel that the positive message invalidates either their own experience as a carer, or that of the person they cared for.
……..and of course the constant negative language that surrounds dementia is a great way of reinforcing the view that people with dementia are helpless, hopeless victims that can never, almost by definition “live well”. So this hostility, based on the evidence personal experience and reinforced constantly by the media, not to mention others in the dementia “world” is an incredibly hard nut to crack.
But we must.
Former carers have huge potential as allies of the dementia “movement” so wonderfully represented by DAI – and we need to find ways to get them and keep them onside through an approach that encourages them to see the potential of a positive approach, whilst at the same time respecting and honouring their experience and that of the people with dementia they have cared for.