Post Code Lottery

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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.

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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.

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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.

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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. 

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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.

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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? ….

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

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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.

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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)

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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.