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As people are complex, it is not a surprise that the environment supporting them is complex

Chris Roberts will be the first person – and not the last – to tell you that once you’ve met a person with dementia you’ve met one person with dementia.

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Everyone has unique experiences. I liken it to all of us, including academics, blindfolded trying to recognise an elephant from part of its body.

the elephant

This morning, I was struck by a new initiative entitled ‘Standing up 4 sitting down’ from Anchor Trust. It was heavily trailed on the breakfast TV and radio as I made breakfast for mum.

Standing Up 4 Sitting Down (#su4sd) is a new national initiative aiming to improve people’s access to their local shops and high street by increasing the amount of seating available to those who need it.  For this reason, Standing Up 4 Sitting Down (#su4sd) is calling on retailers and high streets to do their bit to improve the lives of people by providing adequate seating in stores and public spaces.

It’s the sort of idea which makes intuitive sense, but which some people might never think of however many hours they sit in their office.

Once in a while, you need to get out of your office.

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It’s awkward, but we have to talk about it. Despite all the talk of being united in fighting against dementia, some are impressively unimpressive at working together with people. It is all too easy for certain providers to abuse a dominant position to get ‘market share’ of providing services, particularly if they secure government backing. This is of course a disaster for plurality.

This means that charities are branded in their unique line on ‘dementia’, whether it’s basic awareness or line in training. Too often I’ve seen the 1-2 manoeuvre where X sets up a campaign to ask Government for Y, a secret deal is done, then X secure publicly secures something from Y, and everyone’s a winner.

Culture is so important. Fran O’Hara and Pam Luckock don’t ‘dominate’ in the ‘meet up’ at Llandudno, but they are, whisper it, a critical part.

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But real life is not at all like that. You can only understate dementia’s complexity at your peril, and because of the complexity of people with dementia and the caring relationship the environment for people with dementia needs to be complex, and actually adaptive to changing needs. Above all, it has to have resources in the right place.

The pain of all this is the we’ve known what’s not been right for ages. I can flag up policy reports from the 1990s demanding that it’s the right time for care planning, care coordination, and breaking down the barriers between health and social care.

But who is listening?

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The problem with “person-centred integrated care” is that unless you’re very careful you can get totally engulfed in slogans. If, for example, one of the main disabilities from your dementia is not being able to hear people in a loud room, or have problems in higher order visual processing, talk of the machinery of care in national policy documents may not be your top priority. But, if supported, you can raise it to the top of the agenda like Agnes Houston did.

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Nonetheless, people in policy still make mistakes. I remain aghast at the woeful omission of ‘caring well’ in the Department of Health 2020 implementation plan. “Real people” are needed to fill in the gaps too.

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Take, for example, my example of extra seating for shoppers from Anchor Trust. This could have been easily branded “dementia friendly seating”, or such like, but think for a moment of the horrific unintended consequences as you take your seat on the ‘bandwagon of acceptance’. It’s very rare for someone to live only with dementia – a person with dementia is likely to live with a number of (interacting) conditions.

A “dementia friendly seating” initiative, along with branded leaflets on a small nearby table, would mean that in a shop people with dementia would out themselves and become immediately labelled by their diagnosis if they took up the offer of extra seating in a shop. But at least they could read more about dementia when all they wanted to do was to do a bit of shopping.

And there’s no particular reason why this should be a ‘dementia only offer’. Many people for all sorts of reasons have mobility problems.

I learnt as I came to concluding the manuscript of my third book on dementia on integrated care that you can never underestimate the power of the system to confirm their bias in producing the system most convenient for the system and not for patients/service users. There are some people who are totally genuine, and who carry on with dignity.

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And the people in research aren’t necessarily highly virtuous either. I’ve often recently only understood the purpose of papers in dementia from reading the list of conflicts of interests at the end (early diagnosis, pre-dementia and cognitive frailty being the new holy grail for snake oil salesmen). Researchers can too often fall into the trap of defending their own obsessions, and this can mean a truly magnificent consolidation of certain types of language, e.g. wandering, challenging behaviours. But you have to be a brave soul to be the exception making a stand.

In case you were wondering, I was of course invited to Llandudno for the second annual event in beautiful North Wales where all people are indeed invited to contribute to how dementia services would be better. I went last year. The atmosphere was brilliant. People there weren’t showing off. There was no aggressive oneupmanship. Yes, who’d have thunk it. People there were nice.

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I brought along my books, but I didn’t show them to anyone. I chickened out.

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And I think commissioners, who are real people, also do need to speak to academics, who are real people, as well as practitioners/professionals, who are real people, as well as carers, who are real people, and leads in social enterprises, who are real people, and of course people with dementia, who are real people too.

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It really isn’t rocket science (nor does it need a CQUIN) to value carers.

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It’s often called ‘who’s in the room’ – part of the problem has been people excluded by not being invited (same old speakers, same old chumocracy, same old mailing list, same old exorbitant entrance fee, same failed solutions).

The problem is that this chumocracy is quite incapable of seeing the wood from the trees. Ideas when they arise organically can be unbelievably rich.

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Prof Edgar Cahn, for me the father of “co-production”, used to liken it to having a road map where half of the route was deliberately obliterated making it impossible for you to find your destination.

Co-production is not a series of manuals, or a certificate. Patient option or experience is not a product of a product. All of this is an ethos, and you either have it or you haven’t.

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This event next week deserves every success – and of course I have nothing other than admiration for it.

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