Mr Kipling’s general practice

In Shropshire last year the DAA carried out a survey of experiences of people living with dementia and their unpaid carers. The areas of greatest concern were experiences of care in general practice and in hospitals.

So Shropshire Telford and Wrekin Dementia Action Alliance is concentrating on GP practices this year to get them to become dementia friendly, or at least start.

Here are some dos and don’ts for practice staff. No doubt you can add more…

Don’t expect patients living with dementia to remember their appointment dates and times. Find ways of helping them.

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Do use text reminders of appointments, but if you call us an hour before our appointment we are much more likely to arrive! A stitch in time…etc.

Don’t play music or radio in your waiting area. We need to concentrate on what we are about to say rather than be distracted by noise which is not loud enough to understand but too loud to ignore. Local radio is the worst.

Do use large, contrasty signage to help patients not be confused about where to go.

Do place name signs on doors, not walls, and at around 5 feet off the ground.

Don’t plaster your walls with posters and amateur artwork which will often confuse us.

Do provide information about local facilities, groups or services that we may like or need to use.

Don’t tell patient who is concerned about their memory or other functioning that since there is no cure there is no point in betting a dementia assessment.

Do use the Young Onset Dementia guidance to help you decide whether to refer a patient under 70 for assessment.

Don’t tell a patient that you keep losing your keys or forgetting names and it’s just a sign of ageing.

Do remember that the few drugs available to relieve symptoms often provide significant help, so it is important to get a diagnosis.

Don’t just get frustrated at the lack of support locally for us. Lobby your CCG to get action to improve this.

Do look and smile at us when you meet us and when you speak to us. 

Don’t stare at your computer screen while talking or listening to us.

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Do make your entrance and waiting areas bright and welcoming. Use pastel colours. Provide soft and firm seating at a variety of heights. 

Don’t use dark or patterned floor coverings.

Don’t place a dark dirt catcher mat at the entrance.

Do make sure all staff are dementia friends.

Do require staff who regularly work with people living with dementia complete Level 2 training.

Do make sure every patient who is an unpaid carer is flagged on your system.

Do ask every time you meet a carer if they are ok, and be proactive about providing support.

Do put a contrasting colour seat on your patient toilet, and clear hot and cold signs on or above taps.

Do put an exit sign on the inside of the toilet door.

Do use pictogram signs for toilets and for nurse or doctor consultation rooms.

Do use colour or white to pick out doors that patients may use, but leave others the same colour as adjoining walls.

Do promote double sessions for people living with dementia so they have time to say what they need to say, and to reflect on discussions. So they don’t feel rushed.

Do tell your staff to smile at patients as they walk through waiting areas.  Say good morning. Smile. Put people at their ease.

Don’t march through looking as if you have just sucked on a lemon.

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Do develop a model for sharing care and living planning with your patients. Co-produce it. All professionals contribute. Patient includes what matters to them. Patient has read and write access and can share it as they choose.

Do identify and support a dementia champion on your staff. Make sure they have the passion and understanding and support to make things happen.

Do use the approaches set out in ISPACE (search on line for this guide for general practice).

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Do help patients living with dementia to take their medications correctly. Work with local pharmacies to use appropriate dose boxes or pods.

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Don’t expect us to remember to re-order prescriptions correctly. Find ways to help us, like automatic re-ordering.

Do work with pharmacies to get them to ring patients who have not collected medications when expected.

You cannot do all this at once, but if you don’t start you will never finish.

And, as Kipling might have said, the world will be yours, and everything in it, what’s more, young man, you’ll be a dementia friendly practice.

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Do you want our money?

What’s that noise? 

And what can pubs, restaurants and supermarkets do to get our money?

If you are living with dementia the way you process information changes. This is caused by the brain disease underlying your dementia.

There are several main types of dementia, with Alzheimer’s disease and vascular dementia accounting for around 85% of diagnoses. Two other, less common, forms are frontotemporal dementia and dementia with lewy bodies.

Within these disease groups every person’s symptoms will be different, unique to that person. That’s why we say ‘when you’ve met one person with dementia you’ve met one person with dementia’.

And it’s why we get so annoyed by the media-promoted image of a person with dementia being in their eighties, sitting in a chair, unable to communicate, staring into space, even with a dribble.

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Any disease starts somewhere, and develops over time. If you have dementia you are somewhere on that continuum, with symptoms that can be trivial, or a bit annoying, or quite challenging, or downright disabling.

To complicate this further, we have good days and we have bad days. Even good hours and bad hours. We may know when one is coming, but often we don’t. When the fog descends, sometimes it is just a thick blanket that prevents us from thinking clearly, or indeed doing anything much. But it may also be like fireworks, like sparklers in your head. You can seethe and rage, or be unable to sit still. Or want to sweep everything off the table.

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Everyone’s triggers for rage or explosion are different, but often include noise and visually complicated environments. 

Noise. It might be the clangs or bangs of cups and plates and cutlery on hard surfaces. It might be the hissing of coffee machines. Or it might be musack in the background which you cannot escape from.

Hyperacusis is the name for intolerance to everyday sounds that causes significant distress and affects a person’s day-to-day activities. There is considerable work going on to study the apparent link between the brain disease underlying dementia and hyperacusis.

As the definition states, hyperacusis can cause significant distress. 

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Motorbikes. Empty lorries. Food trolleys with high, loose, mesh sides. Someone shouting close by. Lots of loud conversation in a small space, or a very echoey hall.

Why do these noises gradually swamp our brains? It’s not just because we are getting older and have come to enjoy peace and quiet! It’s because our brains are less able to process this data. It takes longer for the neuronal networks to connect, by-passing the tangles and plaques which are destroying our brains, and to find new routes to process the data, and to access memories.

If I hear a bang I have to work out what it is, and check that it is not a threat to me. That which used to be completely instant and automatic becomes a labour. And that is tiring. And disturbing.

If I am in a cafe and there are a few conversations going on around me, and the coffee machine is hissing and clanking, with the grinder grinding, and the barista banging the used coffee grounds out of the metal holder, what am I listening to? I have got to filter out all those noises I don’t want to listen to. In order to hear the person speaking to me. Or to formulate my words and sentences. Or just to think quietly inside my head.

That is why I avoid noisy places. Noisy cafes and pubs. Noisy restaurants.  

And that is why a dementia friendly environment is quiet. Well sound deadened. With as little echo and reverberation as possible.

Without background music or local radio. My local GP surgery plays the radio so that conversations at reception cannot be listened to. And possibly because they think it keeps waiting patients relaxed. There is nothing more annoying than the constant rattle of radio presenter wittering just too quietly to be understood. Or songs that you really don’t want to hear. They all use up your reduced cognitive reserve, so that you may not be able to think about what you are going to say to the doctor.

What can pubs and restaurants do to help us? To get our custom? To be a place we enjoy going and spending our money.

Have a quiet area. Labelled quiet area. Away from the bar or the cooking area, which is increasingly open and on show nowadays.

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Have walls between different areas, so noise does not carry so easily across the whole space.

Locate the coffee machine away from the public area. Get a quieter one? Serve filter coffee.

Turn the music off. At least in the quiet area. 

Food chain outlets: Train your staff that shouting is not good for business. Plates and dishes can be placed quietly on tables and serving areas.

If your premises are noisy and echoey, use carpet here and there to absorb noise, or wall coverings.

Supermarkets: turn off the music. Keep your announcements to an absolute minimum. Again, at least during quiet shopping sessions. Half a day a week? Could be a real attraction to us. 

What else can you do?

Put some chairs out during quiet shopping sessions.

Get your staff to become dementia friends.

Get rid of those black door mats at the entrance. They look like big holes to some of us.

Reduce notice clutter. Less is more.

Make labels and signage really contrasty, and don’t use all capitals lettering.

Shops can lighten their premises. Nice and light and bright, if you want us to come in.

And turn that music off.

Make sure any steps are really well picked out with bright edging, and in light coloured covering if possible.

Hotels: avoid highly patterned carpets. And mirrors. Keep lifts simple, with large, well-lit control buttons, and without mirrors.

Latest hotel refurbishments seem to go for darkness and mirrors, glitter, reflections. Everything we cannot cope with. We just cannot process all the changes and shapes, and work out what is real and what might be a wall or a hole. 

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If you do this we will not visit you. 

You will not get our money.