Accusing someone living well with dementia of not having a dementia reveals very serious policy flaws

For all the money that has been pumped into ‘dementia awareness’ internationally, one would have hoped that deeply entrenched attitudes were at last shifting.

The drive for ‘a cure for dementia’ has only added a dangerous level of confusion. Cure for what type of dementia? Do they mean a cure for Alzheimer’s disease, the most common type of dementia worldwide?

In what sort of form will this cure reveal itself? A vaccine preventing people from developing dementia, like a vaccine for cervical cancer? Or an oral tablet which ‘stops dementia in its tracks’?

Soundbites are cheap, but it is not an innocent issue at all. Resources are being diverted away from frontline care, such as specialist nursing, into public-private partnerships designed to reap a shareholder dividend for Pharma developing “innovative drug treatments”, or into dementia information sessions.

It is a bit rich complaining of the dire state of post-diagnostic support ; when millions have been actively pumped into ‘information sessions’. Ideally, you should have wanted a world where both were successfully achieved?

It’s too late for a post mortem on that. There will be a change of government soon.

But I continue to be struck by the steady stream of people in authority, involved somehow in dementia care like care homes or on social media groups, who ‘accuse’ people living well with dementia of not having received a diagnosis of dementia?

If you could prove that beyond reasonable doubt of a false representation, designed to generate money or expose someone to a loss, that would constitute a fraud offence under our Fraud Act (2006) in our jurisdiction.

However well meant such an accusation might be, it can of course be extremely unsettling for the recipient of the accusation. At worst, it could come out as a statement designed to cause offence or menacing, which is a public order offence if done in public.

The issue does reveal itself to me as representative of an underlying fault line in national policy, which was intended to facilitate people talking openly about the dementias to mitigate against stigma and discrimination.

That it might not be obvious that someone is living with a chronic progressive condition of the brain is a really significant faulting in awareness policy for me. I remember being ‘guilty’ of thinking ‘he doesn’t look disabled’ after waiting for ages in the queue for disabled toilet cubicles on trains. Of course, some disabilities unlike mine are invisible: somebody with multiple sclerosis might be living perfectly well with an indwelling catheter.

Likewise, for example, a person living with behavioural variant frontotemporal dementia might have virtually no obvious cognitive deficits in memory, planning or perception, but might have found to have a profound change in behaviour and personality as reported by a friend or member of a family.

How will a member of the public identify a person living well with dementia? If it is ‘invisible’, how then do “dementia friendly communities” work?

I do not subscribe to the approach ‘if you see a doddering old lady at a zebra crossing, think you might help them as a ‘Dementia Friend” as this plugs into ageist stereotypes about what dementias are. One of the critical messages of ‘Dementia Friends’ is that “dementia is not a natural part of ageing“.

The media, and indeed ‘policy leaders’, have also contributed to this unseemly mess of memory problems being synonymous with dementia. If cognitive deficits are not substantial enough to be given a diagnosis of dementia, a ‘mild cognitive impairment’ might be diagnosed. It could be that people accusing people living with dementia not having received a diagnosis of dementia mean that “you can’t have a dementia – maybe you have a mild cognitive impairment?” But even this is problematic, as it has not been made sufficiently clear that there is insufficient evidence that mild cognitive impairment represents a ‘pre dementia’ form, and this analogy with other conditions such as diabetes and renal failure actually falls flat.

It is basically an unholy mess. You can see how if GPs refer lots of ‘possible diagnoses of cancer’, the system will be unable to cope with pressing cases of cancer for management. It’s quite unclear how the ‘possible diagnoses of dementia’ are being followed up by specialist services, confirming the diagnosis, or not, over a period of time. You need this progression confidently to make a diagnosis of dementia, further making the urgent drive – this second – of upping the dementia diagnosis rates, however well intentioned – in reality absurd.

Have things actually improved in the last few years?

In my opinion – no.

1 Response

  1. Kate Swaffer July 2, 2014 / 9:43 am

    Have things actually improved in the last few years… NO!

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