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Dementia’s calling card is complexity. Simplify it at your peril.

I have never thought the banal ‘dementia friendly checkouts’ idea should be immune from criticism for fear of offending people who have promoted it in press releases.

Take for example this.

You’re 52, and your GP thinks your problems getting overwhelmed by everything and finding yourself around, as well as remembering names, and repeating yourself, might be due to the onset of Alzheimer’s disease. You’re less convinced; your partner recently passed away having been diagnosed with cancer, and you yourself have been nearly depressed.

You’re waiting for memory clinic to do a more lengthy assessment. And in the meantime – you walk into a supermarket and see a huge sign with corporate branding of ‘dementia friendly checkout’.

You otherwise feel ‘fine’, and actually have yet to tell anyone you are being investigated for dementia, something which in fact you are very frightened about. I think revealing to the world your possible diagnosis of dementia by entering a ‘friendly checkout’ would be an appalling idea. And what about reading in public a leaflet from the checkout entitled ‘You’ve just been diagnosed with dementia. Now what?’

It’s all very well having ‘friendly’ initiatives, but not if the purpose of them is to promote the promoters of them more than to encourage in a non-aggressive way inclusivity and accessibility. Sometimes you do have to wonder why and how common sense gets left behind by all these calls for action alliances. Maybe it’s a power thing.

On the other hand, I’ve been very impressed with the introduction of ‘slow shopping’.

The idea is now being trialled by one Sainsbury’s store in Gosforth, Newcastle-upon-Tyne, every Tuesday from 1pm to 3pm. During this time, people who want to use the service are greeted at the entrance to the store, where a Sainsbury’s member of staff is on hand to assist customers with their shopping. Chairs are also put out at the end of aisles to enable people who struggle to stand all the way round the shop to have a rest.

I think this is a brilliant approach, where you don’t require a person should become defined by a medical label. If one genuinely believes in seeing the person and not the disease, it is beyond contempt that you should want to define somebody by a label.

I myself am physically disabled, so immediately I can see the merits of having chairs at the end of aisles. Also, ridiculous though that the term ‘dementia friendly’ is, this particular example demonstrates why ‘dementia friendliness’ is much more than slick banners, branding and big money. Being truly inclusive is being thoughtful about culture.

I feel the only way to achieve this is to seek actively the opinions of people most likely to make use of your initiative. And also – if you also believe in ‘no more something for nothing’, and believe in the true spirit of co-production where nobody is left behind, you will wish – especially if your revenue as a charity or supermarket is enormous – to pay people for their wisdom as consultants.

‘Dementia friendly hospital wards’ is not just about pretty colour schemes, with dodgy supporting evidence. It’s about delivering a truly person-centred approach. That means having staff introduce themselves properly and regularly. That means buzzers being answered in a timely manner. That means adequate explanation for investigations,

And the same goes for the culture of that supermarket. It’s more about people not being rushed than about having glossy leaflets at the checkout promoting your charity brand.

I’ve often thought why the ‘big guns’ never admit they’re wrong.

Mark Twain was right with his observation, I feel.

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But it does mean people who know a thing or two about dementia have to stick their neck above the parapet, even if they’re deliberately excluded from conferences or undermined by people with long titles.

Thankfully people who are true leaders are more interested in doing what’s right not just doing things right.

And it can be a very lonely path for some of us.

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But dementia is not simple. It never travels alone – a person living with dementia is likely to be living with a number of other conditions. Because of this, a multi-pronged approach is needed, with all parts of the system properly funded including social care (we know the current problems of the NHS being in deficit). That’s the only way we’re going to get anywhere on this through what often appears like a bewildering maze.

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Continuity of care is paramount, especially at ‘care transitions’. People should be supported wherever possible to live independently, but they must always have their human rights respected. We need to acknowledge palliative approaches for dementia with the help of people who are experienced in this, say clinical specialist nurses; and acknowledge the expertise of under-utilised people such as the hospice movement and all allied health professionals.

Above all, dementia is not just about friendly checkouts. It’s about complexity.

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Dr Shibley Rahman’s book “Dementia health, care and wellbeing: a person-centred integrated approach” (with main foreword by Prof Sube Banerjee) will be published by Jessica Kingsley Publishers in early 2017.

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