Visions that hide reality

The Dementia 2020 Vision includes this aspiration…

For England to be “the best country in the world for dementia care and support for individuals with dementia, their carers and families to live”

We are today surrounded by aspirational, visionary statements issued proudly by organisations that want to be noticed. 

My local NHS acute Trust has for two years set out that…“Our Vision is to provide the safest and kindest care in the NHS.”

Is this likely? Is it achievable?

In December their A&E waiting time measure crashed to 58% seen, and treatment started, within 4 hours. There is a major investigation of maternity services following excess maternal and infant deaths and birth injuries over ten years. Staff are leaving in droves.

CQC reported that the Trust was “inadequate” for safe and well-led. That’s the lowest rating.

Safest and kindest? Least safe and least kind?

How will you ever judge whether a system or hospital is safest or kindest or the best country in the world to live with dementia?

Arguably safest is measurable; the others are not. 

And why set yourself up for ridicule by saying your vision is to be safest and kindest or best when in fact your leadership and management are so inept that your measures plunge?

A business would be wound up, bankrupt. The NHS carries on. The same failed leaders carry on, their vision in tatters.

The emperor truly has no clothes.

So, England to be the best place in the world to live with dementia? By 2020?

I am hoping to attend (perhaps even chair, like last year) this year’s conference on Dementia 2020. 

Last year a civil servant trotted out some wonderful assertions based on hopelessly optimistic interpretation of select evidence. You know the sort of thing.

Actually, we’re doing rather well. The diagnosis rate is at the target of 67% nationally. Lots more people are taking part in research. The Government has led the development of the largest ever funding for research.

Wonderful.

But the audience were muttering. It really doesn’t feel like that on the ground, in Sheppey or Sheffield or Shrewsbury.

And I challenged him on the spot.

A year later…

Things are not improving in many places. 

There are still too many GPs turning patients away, telling them it’s just ageing, or stress, and what’s the point of a diagnosis! 

There still is inadequate post diagnosis support.

There are still too few areas with Admiral Nurse services.

There are still too many areas without dementia navigators.

Care home and agency staff are still rarely trained sufficiently so they can provide good, appropriate care.

Hospital staff still have very little training beyond Dementia Friends, which is not even level one on the Dementia Skills model. (All health or care staff who have regular contact with people with dementia are supposed to have level two training.)

There is still too little meaningful support for unpaid carers. And what there is is often almost impossible to find, working through the maze that seems often deliberate.

So, England is nowhere near becoming a good place to live with dementia.

It is far from the worst, of course. And you can be best at something if everyone else is worse.

We know that many more developed and well off countries around the world do worse than us. We know that in some countries, Italy for example, there is very little infrastructure around dementia care, often for cultural reasons.

We also know that in many countries much more is spent per head on health care, and their systems are much more innovative or extensive or well developed than ours.

We have a system in which NHSE and the Government can set out a minimum expectation of diagnostic and post diagnostic support, and the local commissioners can ignore it.

We have a system that measures success in care in terms of coding on GP QOF records.

We have a system in which a hospital can get away with claiming two thirds of its staff are dementia trained, when the training is just a few minutes briefing during induction.

We have a system which has committed all its funding in total ignorance of dementia, in a society which fears dementia above every other disease, and which seems unable to tear itself away from ‘what we’ve always done’.

So, HM Government and Matt Hancock, when you send a civil servant to this year’s Dementia 2020 conference, please make sure s/he has the humility and honesty to say it as it is for us. Every day.

Better still, ask us, living with dementia and providing unpaid care, to tell you, government and local commissioners, what we need you to do.

Why are you all so afraid? We won’t ask for the earth. And what you spend will save a lot more down the line.

Above all, we need to change the way we do dementia in this country.

2019

2019

“This is your year to own it, Cancer. If you feel like you haven’t been in control of your own destiny, it’s time to take back your power and show the world what you’re capable of!”

Thus spake Zarastrologer.

Take back my power. Hmm.

What is going to happen this year?

I’ll be 68. My daughter will get married. 

I will grow kale and leeks and runner beans; tomatoes, cucumbers, chillies; roses, alliums and hydrangeas.

And take Lupin on long, lazy walks. And cut grass in the sun.

Control of my own destiny?

Well of course. We have choices. We make them. We live with them. Nothing new there.

What am I capable of?

(Perhaps) God (perhaps) knows.

Perhaps my ever rising cholesterol will kill me. I might stroke out, and away. (Hope it’s big and one-off.) Hal ready to unwind? A chip here, a gigabyte there.

Two weeks doing nothing as the year ends and starts again is good and bad. Good that I stop thinking about what is wrong with the world. Bad that I relax into comfortable laziness and lose the desire to get up and go out again.

It’s getting harder to bounce back. Or to start another lap. Knowing that it is almost a certainty that the oval circuit will bring me back again to this exact spot next time round.

But just like Coleridge wrote in his poems, you go down and you come back up. There is an archetypal pattern to life, a rhythm which flows on and on, up and down, and up and down, and up and down…

The sea rises and falls. The sun comes and goes. Flowers bloom and wither and leave seed for the next year. And the seed rises up again.

And so, 2019.

The Ten Year Plan for the NHS, or rather for our health care. Dementia is mentioned 19 times in the body of the report. 

Section 1.20 (page 17) says “We will provide better support for people with dementia through a more active focus on supporting people in the community through our enhanced community interdisciplinary teams and the application if the NHS Comprehensive Model of Personal Care”.

There is also a reference to these teams including a dementia worker.

The other mentions are pretty much side swipes with no particular substance, for example about prevention.

I hope “supporting people in the community” means post diagnostic support of the social care model type, to help us live as well as we can/choose. I hope it does not just mean crisis teams, case finding to prevent hospital admissions. 

Here is this NHS comprehensive model of personalised care. This is what the Plan promises.

Look carefully. It is all there. All we ask for. 

It seems to have been around for a year or more.

Perhaps I was hasty last week when I tweeted that there was very little about dementia in the plan. What I should have said is that there are very few words. But this model of personalised care is huge. And fantastic.

The key elements of the model are:

• Shared decision making
• Personalised care and support planning
• Enabling choice, including legal rights to choice
• Social prescribing and community-based support
• Supported self-management
• Personal health budgets and integrated personal budgets

There is a graphic video here, on Youtube.

https://www.youtube.com/watch?v=RXOd-7rn6so

The model is being piloted around the country at the moment.

So, in theory, we people living with dementia will at some time before 2029 receive support that is personalised to our needs and to what matters to us. 

In theory, I say…because we have yet to see how the resource for all this will get down to us.

How will Mr Hancock and his successors ensure that the model is consistent across the country? That it avoids falling into the post code lottery of doom?

The biggest factor for me is those who lead its implementation. 

We currently have CCGs commissioning our health care, led by decision makers who cannot make decisions and don’t know how to lead. They’re GPs for God’s sake. Get back in your consulting rooms where we need you.

But these are all going to be subsumed into mega STPs, or Integrated Commissioning Systems.

Regional health and care authorities.

(Remember that archetypal rhythm that goes up and down, round and round…?)

Perhaps these new bodies, lead by professional leaders, will be able to force this stuff into reality. 

……

That looks pretty long term from where Lupin and I are sitting.

Unless you are in a pilot or accelerator site you won’t see much of this for a while. And those of us with terminal diseases may not have that long to wait.

(I suppose everyone has a terminal condition…it’s called life.)

So for me 2019 has to be about making real differences locally IN SPITE OF the blockers and barriers across the road. 

A network of peer DEEP groups across Shropshire for people living with dementia. (A project funded by Innovations in Dementia.)

More Dementia Friendly Community steering groups across Shropshire. (We already have six.)

Persuading every GP practice in Shropshire to sign up to work to become dementia friendly.

Developing a buddy system for supporting people newly diagnosed.

Putting pressure on the local hospitals to improve care of patients with dementia.

(Is it time to reject their DAA membership for inaction?)

These will make a real difference, here.

Persuading my CCG to appoint a substantive lead for dementia? (So at least they have someone monitoring care and contracts…perhaps even implementing the dementia strategy, or an Admiral Nurse Service.)

……

The rhythm will continue to ebb and flow, round and round, up and down…

But as a friend of mine write to me yesterday:

Some things in life are bad,

They can really make you mad,

Other things just make you swear and curse,

When you’re chewing life’s gristle,

Don’t grumble,

Give a whistle

And this’ll help things turn out for the best.

And…

Always look on the bright side of life.

[whistle]

Always look on the light side of life.

[whistle]

Day to Day Dementia in Shropshire and Telford

In late 2018 I carried out a survey of the day to day experiences of people affected by dementia in Shropshire, Telford and Wrekin, on behalf of the Dementia Action Alliance. The main purpose was to find out what people living in this area wanted us to focus our work on in the next couple of years.

What matters to them.

As far as I know this sort of consultation has not been carried out before here. 

No one has thought to ask what we people affected by dementia think, how we experience day to day things. Even Dementia Action Alliances and similar groups often don’t include people living with dementia, which is entirely missing the point.

Don’t assume we cannot take part. It makes an ass of you. Involve us.

You can read the report of the survey findings here (copy into your browser):

https://drive.google.com/file/d/1FZrzKCmWYD-92JLMY1ZFxveI-I2wVDea/view?usp=drivesdk

……..

30 people completed forms, on paper and online. 13 were people living with dementia; 17 were care givers. 

Not a huge response but significantly consistent findings.

There are, apparently, over 6,500 people in the Shropshire Telford and Wrekin Dementia Action Alliance area living with dementia. That means probably as many care givers, given that some plwds will have more than one family member or friend helping.

I sent copies to local branches of Age Uk and Alzheimer’s Society, and to the Memory Service. I tweeted the survey monkey link numerous times.

But we only got 30 out of 13,000. Sad, but still it is a start, and it is usable, if not statistically robust.

But a big question I have is this: 

How can we reach these people? 

How can we contact them, inform them, create supportive networks?

These 6,500 have brain disease, yet they are not connected to any support network. 

There ought to be a way of collating all those with a diagnosis into a single database for emailing, or paper mailing.

There ought to be a service dedicated to keeping them informed of local activities, newsletters, local groups.

That service could provide two way communication and networking.

Anyone starting a support group, like DEEP, could have the details sent to anyone on the list in the appropriate area.

Care givers could all receive information about services and benefits and support available…in one place.

The data is in GP records. Carers should be flagged on systems, as well as people living with dementia. So it is all there.

But where there is no will, there is no way.

Anyway…

 

This survey shows that key difficulties or priorities for people affected by dementia are:

GP practices are not dementia friendly

Making medical appointments is challenging

Poor, inappropriate care in hospital

Lack of understanding of dementia by NHS staff

Lack of consistent and complete information about support and benefits, easily accessible and in one place

Lack of support for care givers to maintain their own health and individual lives

The need for inclusive social activities and groups that are “dementia friendly”

Supermarkets came fairly high up the priorities for action too, and it is heartening that in recent months several supermarkets have begun to work to become more welcoming of people living with dementia.

So we know what to focus on this year.

Every GP practice should become dementia friendly.

Health care staff training needs to be improved hugely.

Hospitals should sign up to and implement the Dementia Friendly Hospital Charter.

Information and access to support and benefits for care givers need to be improved hugely.

We need to continue to create Dementia Friends, and to promote understanding of how to make activities and groups accessible for people living with dementia.

And we need to develop relationships with supermarkets to help them become dementia friendly.

That’s quite a list. But it is all achievable, with commitment, strength, and determination. 

We will need to use different approaches. 

Softly softly, touchy feely, for some.

Shout from the rooftops for others.

But just never give up. Keep pushing at the doors till they open. 

Shame those who should know and should be doing better.

Support those who need understanding.

As 2019 begins…let’s remind ourselves.

We are not alone in our work. And we need each other to make this work.

Thank you, everyone who has given their time and effort to make Shropshire, Telford and Wrekin a better place for people affected by dementia.

Onwards, and upwards.

Dementia: a solution

I’ve been talking to people lately about models of support and care for people affected by dementia.

Living with dementia and providing unpaid care.

Medical model?

Social model?

What do we usually have? The medical model.

Diagnosis. Medication. Risk assessment (!). Six monthly reviews. Crisis management.

What do we usually not have? The social model.

Living as well as we choose after diagnosis.

Making choices that give us pleasure, healthy or not.

What do we all have a right to? 

A family life, a happy life that we choose, self-determination.

So why do people living with and providing unpaid care for dementia rarely get these?

Dementia is the result of brain disease. We all know this. 

It is painless (usually, depending on your definition of pain).

It is invisible, incurable.

You can ignore it without a guilty conscience.

You can pretend it doesn’t matter.

You can say we can’t do anything about it.

You can say it’s not worth getting a diagnosis (as a nearby GP does).

Because…well, you can’t see it, can you.

After all, we stay at home. We don’t walk beside you in shops and sit beside you on trains. We withdraw. 

We are the living dead. The unknown. The hidden relative.

Better still, not a relative, just someone you don’t need to see. Or talk to. 

I suggest we hold a referendum. Let’s just get over this. Make a decision.

We know that dementia/brain disease exists. But wouldn’t it be so much easier if it didn’t?

And if you don’t have a word for it it doesn’t exist. You cannot have a thought, or a conversation, about something which you cannot name. 

So, let’s just ask the people of they would like to abolish dementia.

It’s really very easy. Just remove the word. 

Of course, then we could go back to lunatic, or mad, or disturbed. Of unsound mind.

But we could get rid of all this horrid arguing over support and care. 

We could just simply get on with our lives. Get on with researching cures for cancer and arthritis and all the rest of the visible, painful diseases.

The government should quite simply build facilities for supported living, so that people who (don’t) live with a debilitating condition (that is not dementia), can be housed away from the public eye.

Let’s face it, this would be a wonderfully refreshing change for everyone. We could release all the voluntary energy currently wasted on dementia friendly communities, and re-direct it to more worthwhile causes. Like keeping roads litter free, and running libraries.

We could also find similar accommodation for those who use food banks because they have failed to work long enough hours to feed and feed and heat their families. Provide them with the relief they so crave. 

Now, that’s true compassion.

So, CCGs and Councils, please make some radical decisions. 

I know this does not come easily to you. You breathe not oxygen but procrastination.

You thrive on uncertainty, equivocation, delay.

But instead of worrying about making decisions about funding…well, just delete dementia, and hunger and poverty.

Job done.

Thank you.

The story of a cock and a bull

Walking Lupin through the woods the other day, squelching and sliding through mud and drifts of leaves, I fell to thinking about Tristram Shandy, a great 18th century novel by Laurence Sterne. Biting satire and wit. I loved it as a student, along with Swift’s “Modest Proposal” to deal with child poverty and hunger. (Eat the children!)

These pieces of writing have inspired my writing and perhaps my values all my adult life. I see irony and metaphor everywhere. I can’t take serious people seriously. 

When I left one teaching job I read a paragraph about a cock and a horse from Tristram Shandy. I regret that now, but at the time I was so fed up with certain staff that it just made sense. But it was not a sensible or honourable way to behave. 

“cock-and-bull story noun [ C ]

UK ​/ˌkɒk.ən.bʊl ˈstɔː.ri/ US ​/ˌkɑːk.ən.bʊl ˈstɔːr.i/ informaldisapproving

a story that is obviously not true, especially one given as an excuse”

 

I have only left one job in my life which I truly was sad to give up. And it was a decision I regretted for a year, until a really great opportunity came along…as a result. But every other place of work has become a place of frustration, anger and impotence, because I could not change behaviours and systems to what I believed was right. And better.

Where am I going with this? 

To my dearly beloved Shropshire Clinical Commissioning Group, or any other commissioner of health or social care, that refuses to implement meaningful, personalised support for people living with dementia to enable them to live as they choose, and as well as they can.

No, I’m not employed by the CCG, or anyone else, so I have no contractual influence on decisions.

Yes, I am one of 320,000 people living in Shropshire.

No, there is no strong reason why the CCG should listen to me more sympathetically than to anyone else.

Yes, the CCG does have a responsibility to provide evidence based health care to their population.

No, the CCG and the Council do not have enough funding.

And yet, and yet…

Yes, there are 3,700 people living with dementia in Shropshire, and

No, there is next to no commissioned support for people affected by dementia until a crisis happens, and 

Yes, providing a social model of support after diagnosis for the years that follow would save at least three times the cost.

Yes…there is evidence.

Yes, we would have fewer hospital admissions, fewer GP visits, later transfers to care homes, fewer care givers collapsing.

But no, these commissioners, whom we pay to act for us, refuse to listen.

They have closed their doors and curtains so they don’t have to meet us, and listen to us.

They no longer come to our meetings.

They take months to reply to formal letters, and only then after our MP has asked twice.

When they do answer, their letter is full of grand sounding, jargonistic hot air, statements that imply they work to support us, explaining what they are going to do soon…

(And then another email comes through saying they have to postpone a meeting or an appointment.)

They say they will evaluate a dementia navigator pilot after it finishes. Not before, after. That means that regardless of the evaluation over 100 people will lose the support the navigators provide. The two navigators will lose their jobs. And the evaluation will likely take six to nine months. Probably too late for the subsequent commissioning cycle.

So two years before a navigator might start again. Lost expertise and knowledge.

We have had no dementia commissioning manager for eighteen months. So no one is dedicating any time to the needs of 3,500 people living with dementia, and their 2,000+ care givers.

Shame on you.

Shame on your denials and excuses.

Shame on your hiding behind doors and blaming others.

What have we tried?

Meeting the Chair and Director of Strategy.

Taking a DEEP group to meet them.

Writing letters.

Attending meetings.

Involving our MP.

Social, radio and print media.

But these are not enough. We need more noise.

We need lots of noise. 

Disruption.

A bit less Mr Nice Guy.

God knows, I have tried to be well behaved. I have been polite. Calm. 

Facts, stories, experiences…

Nah. They ain’t listening.

So…it’s time to shout a bit.

Post Code Lottery

Dementia is the umbrella name given to symptoms that result from brain disease (or acquired head injury but I am not going to talk about that.)

Brain disease starts to develop around twenty years before the symptoms become apparent. And it will usually be several years before these symptoms become such that you seek a diagnosis.

When you go to your GP some will tell you it is not worth getting a diagnosis as there is no cure. They will refuse to refer you, and may tell you it us just getting old and they often lose their keys too.

More GPs will now refer you if you tell them a few times that you know there is something wrong and really want to know what it us.

You might still be working and having difficulties which your employer is picking up on. You might be frightened that something is wrong, and it might be cancer, or a stroke, or something.

GPs can only and should only diagnose very obvious, probably later stage, dementia. They should always refer you to the local memory service.

67% of people estimated to be living with a brain disease that causes dementia are now diagnosed, up from 40% five years ago. But there are big variations around the country.

When you are given your diagnosis you may be invited to take a family member or friend with you. You may be given the news sympathetically. You may even be given a cup of tea afterwards so you can take the news in.

More likely you will be told you have dementia and that a memory service worker will visit you in a few weeks. You will leave in a state of shock probably, however much you are expecting it. 

Just in a few places you will be able to talk to a person living with dementia already, share your fears and other feelings, and a cuppa. In a few more places you might have a dementia navigator or support worker with you at diagnosis, to talk it through afterwards.

Then you will go home in a maelstrom of thoughts and fears.

When you get a visit a few weeks later from your memory service worker you will be given a bag of leaflets. They will be information about dementia, about the type you have, about national charities, and about how to live healthily to delay progress of the disease.

There will be leaflets about benefits, driving, how to avoid risks. 

Few, if any, of these booklets will tell you about support and groups in your local area.

You may be prescribed medication if it is appropriate to your disease. 

And the worker will probably arrange to visit you again in six months.

And you will sit down afterwards and wonder what on earth to do next.

You might then be contacted by a multi disciplinary dementia support team, and someone come out to see you to see how they can help. The team would include a physio, an occupational therapist, a mental health nurse or doctor, a nurse, perhaps even an admiral nurse.

But you might not get this team support.

After a few months you may look around for groups that you could visit or join.

Or of course you might still be working.

You might google local support groups. You might find a dementia cafe, or a carers support group. Your memory service might run support groups.

And you might go along and enjoy it. Or you might find that those attending are at a completely different stage to you.

You might find that you don’t want to do organised activities, or look at old pictures, or sing old songs, or stare at people a lot further on than you are.

And you then might begin to realise that actually there is almost nothing for you. Almost no support in your area.

On the other hand, you might find that where you live there are dementia support workers who will meet you and talk things through with you.

You might find that there are peer support groups within reach, groups which are informal and chatty. And where you meet people at a similar stage to you.

At some stage you may be offered a care plan. It might be by your GP or the memory service worker.

It might be a list of your medications and illnesses, and your next of kin.

It might include a few personal goals, around keeping active.

It could be called a living plan, which you have written, with others. It could be about how you can get support to live as you choose and keep on doing what you enjoy and value. 

….

What next?

A few months or years later your family carer might be finding life very hard. Your relationship, and their health, might be suffering badly. Your care giver might make contact, either directly or through your GP with your Admiral Nurse service.

Or you will more likely find that there are no admiral nurses in your area.

You may go into hospital, not because of your dementia.

And you may be frightened and confused. You will probably stay in hospital, if you have later stage dementia, for several weeks, because the hospital and social cate system cannot provide the right care to get you back on your feet. 

“Length of stay

On average, people with dementia spend nearly four times as long in hospital following a fall and the resulting frailty from a fall and an extended stay in hospital can increase the likelihood of them being unable to return home.” (Alzheimers Society)

Later on you or your care giver might find that a dementia cafe and its activities would be a good thing. So your care giver would find one. Or not, as they are few and far between. If you do go you would be one of the 5% who actually go to a support group.

……..

All of these options are available somewhere. But never all of them for everyone who wants them.

Come to the post code lottery room and see what us available in Nottingham. I have searched the internet and printed off sheets. 

No mdt.

No admiral nurses.

Few dementia cafes.

No DEEP peer groups.

Do you get care plans that you have really been part of and that are useful?

Did you get a good supportive experience when you received your diagnosis?

Was your GP helpful?

There is so much to do. But we are going to change it.

We must have GPs who understand dementia

We must have a consistent model of good support after diagnosis.

We must all have dementia support workers or navigators to be at our side when we need them.

We must all have access to peer support groups, run by and for people affected by dementia.

We must all have admiral nurse services.

These elements of a support model must not be optional. Commissioners must not be able to choose whether to fund them in their area. They must not be able to ignore people who have terminal brain disease just because there is no cure.

We are people living our lives. Our lives are not over when we get the disease and the diagnosis.

We may gradually be unable to do everything we used to, but we are still human beings with human rights. 

We may suffer at times, but we are not dementia sufferers. 

We are not burdens on society or our families. 

The disease is not terrible, or catastrophic.

 

It is just a disease you live with as best you can. And with good support and care you can live pretty well as you choose.

Congressional blog

Well I don’t think I can write a poem in twenty minutes, like Wendy Mitchell did last week at a DEEP meet up in London. She took fifty words chosen from Great Expectations and just made them into a wonderful, clever poem, about living with dementia.

Just now and then I meet a genius. 

But today at Congress I am meeting lots and lots of wonderful passionate people working around the UK (and further) to improve understanding of and care for living with dementia.

Yes I do my bit(s), but we all do. 

We write blogs and we tweet.

We record and share our thoughts in dementia diaries.

We coach and empower people, who never thought they could, to speak to power, to decision makers, money spenders.

We spend our time in meetings, and at conferences. We encourage, support, inspire each other, and more others, to join in.

We listen to each other…about our difficulties and our changes, about our partners, husbands and wives, about how we are changing.

And as was said several times today, half an hour with peers with dementia changes the world as we see it. The smile returns, inwardly and outwardly.

Resilience is something we all need. But when our brains deteriorate and falter we can easily and often feel alone and detached from the world around us. 

Deciphering what we see, hear, touch and smell becomes longer and more taxing. Understanding and taking in what a speaker is telling us can just disappear, words floating past us as we try to find our place in this world. And we stand up and have no idea what we heard and walk away.

And life goes on.

We will go on. We will most of us meet again next month, next year. And we will have achieved great things and small things. We will have nudged people towards better understanding. Towards better provision of support and care.

A few more people with direct payments for what matters to them.

A few more health and care staff with level two training in dementia skills.

A few more Admiral Nurse services.

So. Thank you Congress brothers and sisters for being inspiring. We all need it.

Dementia in the media…unsound and unbalanced

How is dementia portrayed in the media? In newspapers, films, newspapers, and social media?

I know from my own work that some journalists and organisations do try hard to use positive language and images. They ask us, the people living with dementia, and the organisations with expert knowledge, how they should portray living with dementia. They might try to sensationalise, but they do ask us to edit their copy, to change what we don’t like.

But journalists and media publishers primarily want to sell their product. They want to catch our eye. So sometimes they use language which makes you react, makes you keep reading (or watching) so you stay long enough to see the advertisements.

If their intention is to inform (and that is a big if) they often miss their target.

They use simple, colourful language because they want to avoid ambiguity and subtlety. They don’t really want you to think. They just think they have to make it as easy as possible for us, the poor uneducated readers.

How patronising can you get?

Have a look at these images? ….

Look at these screenshots and decide for yourself how they make you feel about dementia?

What is your gut response?

How would you feel, do you think, if tomorrow you were given a diagnosis of dementia?

What would you think about your future?

There are of course wonderful exceptions in the media.

Channel 4 and the BBC and other organisations do of course work hard to present a non stereotypical model of dementia. And The broadsheets may try to be less sensational or hysterical too.

But the use of stock images in newspapers and magazines is usually dire. (Show pictures) many of these are from one agency. Why were they chosen? 

In my experience charities try to use real photographs of real service users. Though I remember when I worked with the British Red Cross we saw the same people in leaflet after leaflet.

Now and then even the Guardian gets it wrong. (Show screenshots of Polly Toynbee article)

This piece really annoyed some of us. Just look at what Polly Toynbee wrote. “Let us do ourselves in. We are out of our minds.”

I wrote a rather offended blog response to it, which attracted a lot of support.

….

So why does this all matter?

Why do language and images matter?

The people I work with around the country, who live with dementia…we LIVE with dementia. 

We don’t let Dementia stop us from living.

Dementia does not define us.

Words and pictures are how we understand abstract things, like feelings, and hopes, and fears. If you only ever see these stock photos of people sitting vacant in an armchair, or gripping their forehead in apparent pain, what will you think dementia is like? 

If you only read or hear of people suffering with dementia, this cruel, horrific disease that makes people burdens on their family and society? What will you think?

I am me, just as I was before my diagnosis four years ago. The same things give me pleasure. I still breathe, and feel, and think. I can still stand up here and talk to you. I garden. I walk my dog. I use my ipad and iphone. 

When I was diagnosed, the community sister from the memory service told me to be careful now, not to take risks, to avoid getting tired…to do less.

Why? Why would this do anyone any good?

Yes, the brain disease that I have will one day probably disable me. And indeed, I do consider myself to have a disability. For legal purposes only. I have rights. Disability rights, equality rights, and human rights.

But I continue to live as I choose. 

I have learned how to work around the difficulties I have. As we all do.

We all have good days and bad days. Bad hours even.

And what you see and hear now, today, is different from me at home on a bad day, or resting in the evening.

A diagnosis of Dementia is not death. It is not the end of life. Although it is progressive and terminal.

It is usually given after several years of symptoms. Brain disease, like any disease, starts on a day, and develops, and eventually you notice. Brain disease will be present in your brain for up to twenty years before you really notice the symptoms. And people deteriorate at different rates.

So that day when you sit with a doctor and a memory service nurse to be told you have dementia, the last thing you need is to be told your life is effectively at an end.

Language

Doctors have for centuries use the word demented to describe their patients.

“suffering from dementia.”

• INFORMAL•BRITISH
  behaving irrationally due to anger, distress, or excitement.”she was demented with worry”

◦synonyms:

◦mad, insane, deranged, out of one’s mind, not in one’s right mind, crazed, lunatic, unbalanced, unhinged, unstable, disturbed, distracted, as mad as a hatter, as mad as a March hare, stark mad; More

In the last two centuries people whose brains were diseased have been locked up, away from public life, in asylums, or mental hospitals. In cells, or huge bunkbed dormitories. They were described as lunatic, deranged, unhinged, demented, mad.

The medical establishment still sometimes refers to patients as demented, or dementing, as a medical description. 

Other words commonly used include suffering from dementia, cursed by the dreadful disease, a burden on their family and society, round the bend, out of their mind…Our behaviour (in later stage dementia) is often said to be “challenging”. And we have for decades been restrained with bandages and manacles, and chemicals.

The current legislation going through parliament about deprivation of liberty refers to people “of unsound mind”. That is intended to be new definition of a person who can be deprived of their liberty. Is that really where we are now? Going back to Victorian judgements.

These descriptions simply betray a lack of understanding…and a lack of compassion. They hark back to former times when eccentric or wild behaviours were seen as evidence of madness. They describe a model of living which is intolerant of difference. And these words perpetuate the stereotype they describe.

The description we choose is living with dementia, or affected by dementia. 

There is a model of wellbeing which includes the concept of living well. So, Alzheimers Society, the government, and others, will say it is possible to live well with dementia.

Yes of course it is, but none of us actually lives well every day, every hour, so I prefer the term living as I choose, as well as I can. This model allows me to make choices from time to time that are unhealthy, or risky, or just plain indulgent. It allows me to choose what matters to me. What makes me smile, and want to get up in the morning. That is wellbeing.

So I am not suffering from dementia. I am living with dementia. I may suffer from time to time, as we all do, whether it is self imposed or not. 

I am not a victim of dementia. I have not lost my mind. I am not unhinged. 

But I may sometime in the future be in a different world from you, when I can no longer make sense of what I see and hear. 

Nor am I a burden, if this is a compassionate society. I am just a person living with a brain disease who will need some support to be able to live my life.

If you see behaviour as challenging and eccentric, it is not because I am challenging you. It is because you do not understand what is causing it, and I cannot explain it to you. That is your challenge, not mine.

Please, We want a positive image of living with dementia. And each one of you can help us achieve this by playing your part and challenging negative, stereotyped portrayals of people living with dementia.

Munchausen by dementia

We are definitely not representative

Nope. You’re right. 

We are not typical of people living with dementia.

We are not the usual people who visit GPs and clinics for diagnosis. 

We should be ashamed of such hubris, standing up and talking for people living with dementia.

Of course we have absolutely no right to claim that we know what it’s like.

And indeed, it is highly probable that we have a wrong diagnosis, since we can obviously talk coherently about our lives.

When we go up on stage you should not listen to us.

When we describe our symptoms, don’t believe us. 

We’re lying. Making it up.

We all have a psychiatric condition that makes us need to have an illness to feel important.

Munchausen’s?

Let’s face it; we are all deluded seekers of headlines and self aggrandisement.

I do agree with you…we should be sitting at home staring out of the window.

Frothy blobs dribbling down or chins onto our shirts and skirts.

We should be unable to eat or drink without help. Unable to speak.

Unable to remember what day it is, or who you are.

So, please do just ignore us. Take no notice.

We don’t fit the mould. 

We are still active in our communities five years after diagnosis. That’s wrong. The diagnosis must be wrong.

We are still travelling around the country. 

We can speak fluently in front of a hundred people.

We look normal. 

It must be wrong.

You told me you cannot believe I have dementia.

You told me you often lose your keys, or forget why you went upstairs.

If you’ve got it, so have I.

And of course, you are right. Spot on. Of course I haven’t got dementia.

I made it up for fun. Because I need to be the centre of attention.

And because I want benefits and support that without diagnosis I could not get.

Yep…absolutely right. I get so much support you wouldn’t believe it.

Yes I want a blue badge to save me walking so far. Because I am lazy. I just don’t want the hassle of parking with everyone else. And it saves me paying for parking.

It is not because I get lost, or because my wobbles may cause me to fall over.

It is really great fun pretending to have dementia. 

So please remember…

Don’t listen to us.

Take no notice when we say we have bad days, or we cannot answer unexpected questions.

Take no notice when we tell you we cannot see things in front of us, and when we claim we burn ourselves when cooking.

When we say we cannot remember how to tie shoelaces, or fill a kettle.

When we say what you see is not what we are like at home.

You are right. We are not what you see in newspapers or on television.

And of course we have no right to come out in public and ask for support. And care. And help.

What we should be doing is hiding away where you cannot see us.

Then we won’t exist. And you will know that you are quite right.

You can then speak for us. Oh how wonderful that will be. So much easier for us both.

You can then decide what you want to give us. And you can say we are of unsound mind, and cannot make decisions. And you can lock us in, and tie us down, and cosh us with pills. 

Like the good old days. The good old days.

Well, I have enjoyed our conversation, and I think I now understand. 

Now, where’s the bedroom?

A few odd moments

Just had a few odd moments.

I could not place some names in my emails.

They meant nothing at all.

Blank. Fog.

Who are they? 

Why have I got email from them? 

When did I meet them? How do I know them?

Have I missed something?

And yet, and yet…

I just presented at a workshop for a new dementia strategy for our local community health trust.

Dementia is everyone’s job.

That is what I say anyway.

And I spoke fluently and brightly about dementia…brain disease.

And people said they would never think I could have dementia.

I don’t blame them at all. I sometimes wonder myself.

Just for a while.

Then I look through my email and the names mean nothing at all.

I just cannot find them in my memory.

I have to concentrate so hard and keep my brain engaged on what I do to keep my act going. And it really does feel like being an actor in a loosely scripted drama. Lot os improvisation, but the less the better.

Some of it is easier…Talking in public about dementia, for example. Done it so often now that it is pretty much locked in.

But that pushes the rest out of reach. 

And I need some down time and quiet to re-activate or redraw my wiring diagram.

……..

There are times when I get tired of doing this, talking about what services should look like, what matters to us, what is missing…and why.

As someone said to me today. It’s all very well going to these meetings and talking, and writing down ideas and observations. 

What about the HOW? 

How will “we” make these things into a model and make it happen?

Or, rather, who will make them happen?

Who will push for commissioners to commission different services, and services differently?

Will the Trust leaders be passive and simply continue to provide what is asked of them? Or will they speak up and lobby on our behalf? 

We’ve told them what matters to us, so we can live as we choose, with the support that enables us to do what makes life worthwhile.

What is their responsibility? 

Is it to their commissioners or to their community?

To their paymasters or to their community