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DementiaDo 2016

Andy Tysoe aka @dementiaboy shares some things you can do to support #DementiaDo for Fab Change Day. There’s something for everyone here, so make sure you #DementiaDO something for this year’s campaign!

I was asked to run a campaign for change day around dementia last year. Great idea but I think there are enough campaigns, strategies, guidelines and visions we just need to DO something about them – hence #DementiaDO – (click here to see 2015’s campaign.)

Encouraging people to see the person, not the dementia!

Dementia isn’t just an issue for hospitals, health or social care – it affects us all, whatever we do – as we all intend to grow old, we all have older people in our families and we all live in communities too. And anyway, what’s the point of a ‘dementia friendly hospital if the community in which it sits, isn’t?

andyAlso, when someone is given a diagnosis of dementia, someone else is given a diagnosis of ‘carer’. Who prepares that person for the journey ahead?”

So the #DementiaDO campaign is about low/no cost high impact changes involving the whole community in making life better for people with dementia and their carers. That’s NHS staff, social care workers, members of the public and people affected by dementia themselves. Read more in this blog from me.

Change doesn’t have to cost either – a welcoming smile and a handshake can mean so much but costs nothing! For example – We can’t afford to repaint our hospital in dementia-appropriate colour schemes and principles now, but we can commit to doing next time we redecorate. We can’t make all our policies and procedures dementia-inclusive overnight either but we can tackle them one at a time, when they come up for their ‘review-by’ date.

#DementiaDO… the community

The best way to engage with your community is to get out into it! We’ve taken our Dementia Education Sessions on the road and deliver them in banks, shops, schools – in fact anywhere we can to get the message out!

Here are two more examples:

Dementia Support Group meet-ups

Watch the video & click the arrow to share

#DementiaDO…Listen and Learn Event (the anti-conference)

Musician Paul Hitchmough, who has dementia, joined forces with the Countess of Chester hospital choir at the “Listen, Learn and DO’ event as part of dementia awareness week. Event Organiser Andy Tysoe who’s a specialist dementia nurse at the Countess of Chester hospital said: “We can’t expect people with dementia to change their behaviour, we need us to change our behaviour and our approach then we can help people live better with their dementia.”

Watch the video & click the arrow to share

number10#DementiaDO…number 10

We’ll knock on anyone’s door to get the message across! Don’t forget that dementia is apolitical – it transcends countries, cultures, communities and doesn’t care what political party you support either. Think about this – Margaret Thatcher was probably one of the bluest Prime Ministers the Conservatives ever had. Harold Wilson was one of probably the reddest the Labour Party ever had. Nothing in common politically but both died with dementia so we need to park the politics!

DementiaDo supports #dementiawords

Check out the Dementia words website here http://www.dementiaaction.org.uk/dementiawords

We’re supporting this campaign at the Countess by checking the language content of our references to people with dementia at the hospital for example – referring to someone as a ‘dementia patient’ doesn’t help staff see the ‘person first’ So we’ve changed our ‘dementia alert’ on our electronic recording system to do just that!

From this…

patient

 

 

 

To this!

person

 

 

 

 

This didn’t cost any money and no meetings were harmed in the change either!

#DementiaDO also believes that #dementiawords should apply to the names we call our services too. We know that dementia doesn’t just affect older people, that it isn’t a mental illness and that it’s about living better with not infirm with, so why do we still refer to services for people with dementia as ‘Elderly Mental Health?’

It’s one of those cringing moments when someone says to me ‘Dad can’t manage at home anymore and needs 24 hour care. I’ve been asked to look at different home to find one suitable. Can you tell me what ‘EMI’ stands for?’

We also know that dementia doesn’t just affect someone’s memory either so why is it that if I feel that a person I have assessed at the hospital needs and agrees to further investigation, I have to refer them onto Older Persons Mental Health Memory Service?

If we want people to rethink dementia, we need to start by rethinking the labels we attach to our services!

Let’s get rid of the term “EMI”

There are so many things wrong with dementia – from aspects of care to the negative attitudes towards it. The first thing I would put in is this – the term EMI but what would you put in? let us know and we’ll get a #dementiado Room 101 going!

Join Andy in ripping up the term and send and tweet us your selfies doing it

Watch the video & click the arrow to share

Watch Andy and a very willing audience ripping it up together…

       emi-andy-tyso

Download the template  and send or tweet us a selfie of you ripping it up – tweet @dementiaboy or @fabnhsstuff with your pics – go on, let rip and let’s rid the NHS of this negative term.

#DementiaDo – The Petition

change-petitionAndy recently took out a complaint against the Daily Express and their misleading front page headlines on dementia with the The Independent Press Standards Organisation (IPSO). Unfortunately the complaint was not upheld as IPSO judged that ‘read in their full context, the headlines were not significantly misleading’ This basically means a newspaper may get away with printing over-blown, stigmatising and scaremongering headlines as long as the article counters this for example: ‘Drinking coffee COULD help to prevent memory loss, one of the main symptoms of dementia’ – the front page headline to this article was’COFFEE FIGHTS ALZHEIMER’S’ In light of the flood of misleading, disproportionate headlines about Alzheimer’s Disease being infectious via surgery or blood transfusions on 10th September 2015, headlines must now be allowed to be challenged in their own right. IPSO do not allow appeals against their decisions and therefore this petition is the logical next step. Please sign and share this petition and together we can #dementiaDO something about the distress, misery, stigma and false hope generated by these headlines. Thank you. Andy Tysoe aka @dementiaboy

Watch the video & click the arrow to share

I’m a person living with dementia posters

chris-robertsWe have also committed to putting one of these posters up in every staffroom at the Countess. Why don’t you do the same in your organisation? Download and print off these posters for free:

I’m a person living with dementia poster 1 
I’m a person living with dementia poster 2
I’m a person living with dementia poster 3 
I’m a person living with dementia poster 4
I’m a person living with dementia poster 5
I’m a person living with dementia poster 6
I’m a person living with dementia poster 7

Share pictures of you putting posters up on twitter with the #dementiaDO hashtag!

What changes can you make to your paperwork? Let us know!

#DementiaDO – Building Cognitive Ramps for people with Cognitive Disabilities

FACT! 47% of people living with dementia do not feel part of their community and three quarters do not feel society is geared up to deal with dementia. (Dementia 2012: A national challenge, Alzheimer’s Society, 2012)

FACT! 62% of people with dementia living alone are lonely and it can sometimes be hard to access services, which only adds to this isolation. (Dementia 2013: The hidden voice of loneliness, Alzheimer’s Society, 2013)

If dementia was a physical disability, these statistics would cause uproar. But it’s not. It’s a different kind of disability one I call a cognitive disability. To explain – Cognitive is of cognition, the process of thought. People with dementia have problems remembering, reasoning and thinking – therefore, a disability.

We can all generally ‘see’ a physical disability. For example, someone with a white stick or hearing aid or someone in a wheel chair. We can also see the physical ramp that enables that person to enter buildings and services.

We must now start building ‘cognitive ramps’ as well as physical ones to enable people with dementia into the same buildings and services, instead of pushing them away because they ‘don’t fit in’

We can’t, however, generally ‘see’ the cognitive disability caused by dementia so maybe we can’t ‘see’ the cognitive ramp that would enable the person to enter our hospitals, shops and services.

Comments like ‘hospitals aren’t good for people with dementia’ imply the issue is with the person with dementia- Not true! We need to actually change the hospital and make reasonable adjustments as we can’t expect someone to change their disability!

The Equality Act 2010 clearly states that we can’t discriminate against someone because of their disability and dementia IS a disability!

So what’s a cognitive ramp? I think the cornerstone of a cognitive ramp is allowing more TIME for someone with dementia and also having the UNDERSTANDING of why you need to. There are also some physical changes you can make to the environment too but again, you need to understand the principals behind them as well.

Think for a moment about how people in wheelchairs were originally accommodated in supermarkets – at first, one checkout till out of several was identified as being ‘wheelchair friendly’ It would have a blue badge on display, was slightly wider and the counter was lower too.

Now all checkouts are the same – all with wider and lower counters – that’s going from being ‘wheelchair friendly’ to ‘wheelchair inclusive’. That’s exactly what we should be doing for people with dementia so, to get the ball rolling, how about a ‘dementia friendly’ checkout in a supermarket?

A sign above the checkout would be a start. Some people have said ‘that’s ridiculous’ people with dementia won’t recognise that? Well that’s a big assumption to say an estimated 850,000 people with dementia won’t recognise a sign just because of a diagnosis?

Other people have said that the carer who may be with the person would be too embarrassed or ashamed to use the checkout. Well, that’s the whole point, why should you feel embarrassed or ashamed because of a brain disease you didn’t get into a queue to accept? But you have to start somewhere and #DementiaDO is all about the DOing not just the talking…

#DementiaDO…the Checkout

screenshot-2016-10-10-12-23-53

checkoutClick here for the story on ITV.com

Read this blog from Pippa Kelly about the dementia-friendly checkout.

So our challenge to you is – ‘What reasonable adjustments can YOU make to your workplace or service to allow more time and understanding for people with dementia?’ and let us know!

#DementiaDO…the basics – Building understanding through education

The DementiaDo the basics NHS education is available to all. If you’ve not read them check out the website here.

From Fab Change Day Dementia Awarenesss – Click here to view 31 of the best thoughts from people who have just completed a #DementiaDO awareness session.

#DementiaDO…the basics started off as a request to deliver dementia awareness sessions to nurses at the Countess of Chester Hospital.But dementia isn’t just an issue for nurses. It’s not just an issue for the health service, or for all our health and social care services either. Dementia is everyone’s business and therefore everyone need to know something about dementia, what it is and as important, what it isn’t.

One-in-three people over the age of sixty-five will die with dementia and around 850,000 people are currently thought to have dementia here in the UK. That directly impacts and affects over twenty million of us as either a loved one, friend, neighbour or at our place of work.

Not one to re-invent wheels, Dementia Friends, an Alzheimer’s Society initiative, had recently been launched and seemed to fit the bill as a great session to start with although over time, with feedback and requests for more information, the session has now grown into, and before they were constructed, all seven outcome requirements from NHS tier 1 basic mandatory dementia awareness for ALL staff to attend.

Many people with dementia feel that they have lost friends, or become a burden to their families since diagnosis.

So why is that? You may have thoughts about this already but I think its down a general lack of awareness and understanding, coupled with fear and the stigma that’s attached to dementia that causes this issue. Think about previous diseases with stigma –cancer in the ‘70’s and Aids in the ‘90’s. Stigma in those diseases has been addressed so now we need to #dementiaDO the same for people affected by dementia now.

But when you think about it, when someone is diagnosed with a dementia, someone else gets a diagnosis too –that of ‘carer’ and who prepares that person for the journey ahead? I’ve spoken to people who say they learn about it as they go along, on the back of a fag packet or from the proceeds of a coffee morning or tombola and that’s wrong. As a health service, we expect so much from family carers of people with dementia but so often give so little back.

The NHS sits on a wealth of information, training and education and needs to start sharing this with people other than their own staff who would certainly benefit from it. And not just this session either. A family carer will be expected at some point to give personal care in some form to their loved one so why not share other aspects of our mandatory training like infection control and manual handling as well?

But also –who tells the daughter of their mother with dementia what’s the best thing to say when the mother asks for her mum? Or the wife what to say when the husband sits bolt-upright in bed at 2am and asks to go home? When he’s in his own bed, in his own bedroom, in the house he has lived in for over 50 years? But the expectation is there, that because you are the carer, you should know all this.

The same goes for health and social care staff too but this isn’t the case. So that’s what this session aims to do raise awareness and understanding and open up our NHS training and education to whoever wants it.

Our challenge to you – What education and training can you open up to others? Carer’s should be viewed as a part of the person with dementia, not apart from as they can fill the cognitive holes left by the dementia and bring the person to the fore, instead of the dementia.

This is what Alistair Burns, National Clinical Director for Dementia, NHS England thinks of #DementiaDO…the Basics

#DementiaDO…Carers

We need a radical rethink on how we view family carers and supporters of people living with dementia. A carer must be seen as part OF the person with dementia and not apart FROM.

When we think of the concept of ‘cognitive ramps’ for people with cognitive disabilities, it’s the carer who helps the person up that ramp, providing disability support, the same as a wheelchair, guide dog and hearing aid would. You wouldn’t take these items off a person at the ward door, so why do that to the carer? If the Carer chooses to stay with their loved one in hospital, they should be allowed to do just that.

I’ve noticed a misunderstanding carers. Some services and members of staff do not support 24hr visiting, some with valid reasons BUT, carers are not visitors, they are carers and fill the cognitive gaps caused by the brain disease of dementia!

We talk all the time about ‘integrated health and social care’ but we should be integrating our care with people affected by dementia as well and forming true partnerships. We need to level out the playing field by:

Not just sharing dementia education with carers but other aspects of care provision too

Not only giving 24 hour access to carers, how about giving a lanyard too so we can all wear one!

countess-carer-lanyard

Finally, here is a short quiz to help. What’s the difference between a visitor and a carer?

Watch this short clip to find the answer…

Find out more about the awesome John’s Campaign here , watch the video below and make sure your care setting is signed up!

In summary

What you can #DementiaDO

For you:

  • Sign the #DementiaDO petition
  • Print off the EMI template and rip it up!
  • Tell us what you would put in #DementiaDO…Room 101
  • Download and put up a #dementiawords poster
  • Smile, use #hellomynameis then offer to shake hands!
  • Don’t forget to share on social media what you do using #DementiaDO

For Organisations:

  • Allow carers to accompany their loved ones on the ward and outpatient appointments!
  • Give carers a lanyard and treat as care partners
  • Share your education sessions and fill those empty seats
  • Commit to use dementia inclusive colours and design next time you redecorate
  • Make your policies dementia inclusive next time you review them

Thank you,

Andy Tysoe