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Persons living well with dementia are not 'curiosities'. So let's move on from this.

Quite to my surprise, I found that the ‘Pushme-pullyu’ from “Doctor Dolittle” has its own description in Wikipedia:

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A ‘Pushme-pullyu’ was therefore a ‘creature of curiosity’.

A common introduction to a session introducing dementia might be to ask the question, ‘How many of you know a person with dementia?’ About half of the room will put their hands up at this point.

If you change the question to, ‘How many of you know of a person with dementia?’, it is said that the other half of the room will put their hands up.

It must be, by the law of averages, be very likely that you will know of someone with dementia at the very least, as it is though that – conservative estimate klaxon – there are about 800,000 people living with dementia in the UK.

The “dementia friendly communities” plank is an important part of the dementia strategy “tripos”. In fact, it is one of the yardsticks by which the current dementia strategy in England is being judged.

This is, of course, “low hanging fruit”, as the number of dementia friendly communities will have certainly gone up from a figure tending towards zero.

It is impossible to argue AGAINST inclusivity and accessibility, especially since living with dementia has moved in policy terms from a biomedical model to a social one of disability. Therefore, making reasonable adjustments for people living with dementia is utterly commendable, and can be particularly challenging if certain disabilities are ‘invisible’.

But the term itself is problematic: “dementia friendly communities” DOES imply division – that people living with dementia, “the dementia”, are different to us.

There is still a stubborn feeling of stigma and discrimination, by some, towards people who have received a diagnosis of dementia. And part of the solution to that will be addressing bizarre pre-conceptions of what people living with dementia might be like.

But even within any one of the various ‘disease categories’, an individual’s lived experience of dementia will be different. That is the paradox of extrapolating too much from any one person’s experience of living with dementia.

I feel, though, we are still in “dangerous territory”.

I witness all the time people with dementia featuring in events to do with dementia in a tokenistic fashion.

While the organisers and participants of the G7 ‘legacy event’ will vigorously deny that this was a feature of their event, the answer by Dennis Gillings, “World dementia envoy”, whose particular expertise in living well with dementia is quite uncertain, to Helga Rohra, herself living with dementia, did raise eyebrows amongst the cognoscenti of this field.

At the other extreme, it would be nonsense to have no plenary speakers living with dementia in sensitive panel debates on topics to do with dementia. And yet this is exactly what happened in a recent high-profile event on ‘sexuality and dementia’.

But the idea that you’re “smashing preconceptions” about people living with dementia might at first sight seem perfectly laudable, and people should not be in denial, or showing ‘wilful blindness’, of their dodgy preconceptions of what dementia might be. The sinister side of the shock doctrine lying as a bedfellow with commissioning for dementia is that it’s well known private markets thrive on fear.

And why the need for hyperbolic language? It’s a bit like my pushme-pullyu example: the use of ‘shock doctrine’ to make a point. Why are people ‘shocked’ that brain scans might reveal significant atrophy of the cerebral cortex, and yet people can still function and be good fun to be with?

However, the whole approach must be articulated with extreme caution, as an unintended consequence of this approach might be to exacerbate division rather than to encourage inclusivity. And nobody wants this.

“Inclusivity” is a difficult concept. I sometimes balk at the idea of ‘involving people with dementia in assessing our research grants’, in the same way I perhaps ‘involve’ my postman when I take receipt of my mail every morning.

But with the greater high profile of the dementias, we all need to show greater levels of responsibility before we descend into a chaos of slogans.

 

 

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