The impact of dementia

This is an edited version of a speech I gave today to the Shropshire Disability Network.

Dementia is a generic name for symptoms resulting from brain disease.

Depending on what the disease affects, your brain may shrink, neurons may tangle and stop transmitting, and very specific functions may work less well or not at all.

There are well over one hundred different diagnoses for dementia, the most common being Alzheimers, vascular, dementia with lewy bodies and frontotemporal lobe.

But everyone is affected differently. Everyone’s symptoms are different.

 

Once you’ve met one person with dementia…you’ve met one person with dementia.

In my case….about six years ago I realised I was having difficulty organising my work, remembering what I’d said to whom, at which meeting, forgetting names, taking a little longer to explain myself.

I was working part time, having resigned from a full time job with stress. My doctor assessed that I was stressed. And that my cognitive impairment was related to work stress and depression.

I had visited the memory service when I was unable to work full time, and had a brain scan. But the diagnosis at the time was depression and stress.

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Later, in my part time work, I started to use my own iPad for recording and organising everything I did. Every conversation was noted, every meeting summarised. Every appointment recorded. There for me to check regularly and frequently. I managed.

But I could not grasp the explanations of a complicated system that my team used in their work. Time and again they explained and I just could not get it. And remember it.

Eventually that job came to an end, for complicated reasons, and I asked my GP – for the third time – for referral back to the memory service for assessment for dementia. My wife and I knew that I was not functioning properly.

I remember having to have silence in the car trying to navigate in France on a family holiday. I could not work anything out if there was music or conversations going on. That has not changed!

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It took a day and a half of tests and a brain scan to come to a diagnosis of mixed dementia….Alzheimers and vascular. You see, I have a fairly high IQ, a degree and professional qualifications, and I compensate for my reduced functioning. So most people don’t think I could possibly have dementia.

They say…”well if you’ve got dementia I must have too. I lose my keys all the time. I can’t remember people’s names.” Etc etc.

You see, people think (and I include GPs) that dementia is about memory difficulties. And they think you only get the brain disease that results in dementia when you’re old, in your seventies and eighties.

So, what is the impact of this brain disease on me and others who live with dementia?

I do have difficulties with words, especially with people I don’t know well. I can’t process incoming signals as fast as you, and it takes very little distraction to put me off my stride.

Hence, I can’t have music and conversation at the same time, or TV for that matter.

If you ask me something I’m not expecting I may not be able to answer. I have to be zoned in. I have to find the bit of my mind that I need for a particular reason. Then I’m ok. It takes time for my brain to find a route through to the memory or the thought that I need.

You see, if you’ve got billions of cells in your brain, billions of neurons that link up in billions of different patterns to create billions of memories and calculations, if a few million go down it might be a very small proportion, but that tiny, particular function will not work as well or as fast as before.

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So you slow down. Conversations have pauses. Listeners have to give me time to work out what I want to say and then say it. I tend to avoid starting conversations with people I don’t know at parties or meals together because I can get foggy after the usual cliches. And if they ask me about me I can stick completely.

I find I make mistakes judging distances, steps, changes in floor level. Dark patches or stripey patterns fool me and I may lose my balance, or miss a step. Or just feel discombobulated.

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Occasionally I lose touch with where I am. Disorientation. The first time it happened I was shopping in Aldi. For about ten seconds I hadn’t a clue where I was. Then it came back. Doesn’t happen often thankfully.

I cannot fix names in my memory. Well. I can sometimes fix them, but many names just won’t stick. So, a PA at SATH recently told me her name several times in the space of one afternoon. I tried and tried to fix it. But it just went. Flew away. And there’s a plant I cannot remember. Euphorbia. I have to find ways round to find it. Or just point to it and wait for my wife to complete the sentence.

I have almost lost my sense of smell. That’s both good and bad. I would love to smell the freshly cut grass at home, and flowers and roses, or damp woodland, walking with my dog. But I also cannot smell the less attractive smells…which I’d better not name.

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What is the impact of brain disease on my life?

Unlike a person I met recently (who ought to have known better) I don’t regard it as sad. It’s not ended my life. It’s not a death sentence.

It has merely slowed me down a little. I can still do everything I could four years ago. But I do now make choices that I wouldn’t have thought about before.

For example, if I can I avoid crowded places, like noisy restaurants or pubs or parties. I prefer to invite two or four friends round for a meal at home, where I can control the environment and can talk and listen easily.

If I do have people around when I’m cooking I ask them to go elsewhere while I cook. I can’t think about what I’m doing and have loads of noise and conversations going on around me.

I don’t drive in the dark. It’s to do with lights in my eyes, and flashing, which just disorientates me.
……..

But the biggest impact has been through meeting a lot of lovely, enthusiastic people who also live with dementia and work to raise awareness and improve support, around the country. I really enjoy meeting up now and then, perhaps in London or North Wales, or Shrewsbury.

I feel excited to work to improve life for people living with dementia. It’s given me a new challenge and every time something goes well I feel tremendously pleased. And vindicated.

Because sometimes you can feel quite alone, and it’s really important to be reminded that others think the same and are working to improve life for people living with dementia.

Twitter and Facebook are tremendously helpful in sharing information and keeping up with what’s happening around the country.

……..

I am lucky. Really. I got my diagnosis quite early on in the progress of my brain disease. So I have lots of time to do things I planned for later in life, and to be active and engaged in the community.

I don’t regard it as sad that I’ve got dementia. It’s shit, but it’s just life, just like getting cancer (which I’ve also had) or heart disease (which I also have).

I’m not always optimistic. Far from it. I have black days. Black dogs. But doing stuff to improve people’s lives is mostly rewarding and even fun.

I’ve started two DEEP groups, in Shrewsbury and Church Stretton. These are just social meeting groups for people living with dementia to meet, chat, share experiences and information. And to have someone listen to them.

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The impact of these brain diseases on many people living with dementia is disempowerment. One or two people who come to the DEEP groups speak of being told they are useless by their family members, or having their wives speak for them all the time. I see men just stop talking because they have given up, and they know their wives will just take over. Or not wait for them to find their words. When we meet away from family and Carers we open up. We share what we actually feel. Often frustration and bloody annoyance.

Of course, it’s not easy for spouses or other family members. It’s bereavement. For both sides. But we really need to provide support for people living with dementia, and training and support for their spouses and families. There’s a great little training course called “getting along” which I’m hoping to bring to Shropshire soon to help couples get over these difficulties.
……..

Now let’s think about disabilities.

Let me quote from a DEEP guide to dementia and rights…called Our Dementia, Our Rights.

“Many people find it hard to think of their dementia as a disability, and are understandably reluctant to take on another ‘label’.
The fact is that dementia is counted as a disability if it causes “a physical or mental impairment which has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities” (Equality Act 2010).
Likewise, Article 1 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) states that “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments, which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others.”
The word ‘disability’ is therefore not a stigmatising label imposed upon individuals. It is just a means to an end, a tool.
Another group–people with mental health difficulties–don’t consider themselves as disabled either, but they have made very good use of the UN Convention to claim their rights.
So, even if you don’t think of dementia as a disability, the law does define the impairments it may cause in this way–and this can be to your benefit.”

I don’t think of myself as disabled.

There are things I cannot do as well or as easily as ten years ago. And my symptoms will get worse. There’s no question about that.

But am I disabled?

I say no. I still have plenty of abilities. I am able to do whatever I want. I can take risks. I can cook. I can walk up hills. I can shop. I can work with directors of NHS trusts. I can speak at conferences, organise DEEP meeting groups, chair a patient panel at an NHS Trust.

It just takes a little more effort and organising than ten years ago.

But I do think that the legal definition of disability is important because it allows people to use the law to influence change. So I accept that I am, by law, disabled, because that is the way we people living with disease or physical impairment can get equality of access and treatment.

But please don’t let “disabled” define you. Disabled is just a word that allows us to get some benefits (though that’s increasingly difficult) and to be guaranteed certain rights.

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Intrinsically, we are not unable to do things, to live our lives as we choose.

We simply are not perfect. But, you know, no one is.

Everyone has impairments from perfection. Whether it be intellectual or physical.

I want everyone in Shropshire and Telford to simply be accepted for being people. We have incredibly diversity.

I hear people say, time and again, “of course, we don’t have diversity in Shropshire”. What they mean is, we’re 99% white Caucasian.

But we are all different. Every person with brain disease is different. Every person has different physical abilities. Every person has different life experiences, memories, family memories, personalities…

We have phenomenal diversity. So let’s celebrate diversity in Shropshire and Telford.

We all lead our lives. We all make choices. We all take risks. And we all have huge amounts to contribute to the community.

I welcome our differences. And I won’t be defined by dementia.

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I’ve changed my mind…

I’ve changed my mind.

I don’t have dementia any more.

It’s really liberating.

I no longer feel like I belong to a disability group.

A group of 850,000 people with mental illness for whom there’s no hope.

I decided this morning when I woke up.

I have brain disease. Not dementia.

Just like I have heart disease, and bone disease, and vascular disease, and kidney disease…

I have brain disease.

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Little tiny parts of it are being enveloped, strangled, and killed off, and gradually these are growing and coalescing into larger areas which are meant to control functions that are normally automatic.

I’m no longer demented. I’m not suffering. I’m just living and dying.

As is everyone.

From the moment we are born, or even before, things in our infinitely complex bodies go wrong. And some people die in infancy or childhood, some as young adults, some in their fifties.

Most of us get past seventy. But we’re all not as we once were.

It’s life. And death. Of tissues, cells, muscles, bones, organs, and brains.

And for the most part we recognise and accept the age related physical diseasing of our bodies. We know we will get old, we will creak and stiffen. There will be things we can no longer do.

I wish I could still climb steep hills and mountains, and I harbour a belief that one day I will do so again. But I accept, reluctantly, that my heart and arteries are diseased and at the moment I can’t get enough oxygen into my muscles to carry me up there.

I still walk miles on the flat with Lupin. And enjoy it.

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What, then, is it that makes our view of dementia different? Why is there this cultural, deep seated revulsion at the thought of developing the symptoms known as dementia?

I think I have cracked it.

It’s because we don’t want to lose our minds.

We don’t mind losing a finger, or limping, or taking tablets for diabetes. But if you can’t communicate, speak your mind, and think, who are you?

And we have deep seated cultural, but largely unconscious, fears and prejudices about people who are different from who we think we are.

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I am no different, and I struggle with my unconscious bias and prejudice which I suddenly see spring up from time to time.

Why does mental illness get much less funding per person than physical illness?

Why in the recent past were people with mental illness locked away out of sight?

Why do we squirm and look the other way when a person talks loudly and randomly on a bus or train and doesn’t follow the social norms?

We don’t like it because we’re frightened and because they’re different from us. And we think thank God it’s not me and turn away.

So, let’s think about brain disease.

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Physical damage to the brain, that gradually slows and then prevents bits from functioning as they should.

It’s no different from arthritis.

We just think it is different because we see it differently and we are frightened.

If we lose our brain we lose our mind.

And if we lose our mind, who the hell are we?

As I said last time, if I lose my memories and reference points, my map of me, because I can no longer access it, who am I?

It’s frightening.

But to understand that it is just disease of the brain, not madness, helps me to approach it more calmly.

And it would help us all to accept that we’re all diseased and we all live on withm our diseases.

As best we can.

As we choose to live our lives.

No more demented suffering. No more struggling. No more death sentences.

Just being alive and living as best we can.

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Let’s welcome our differences.

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Or, at the very least, ignore them.

Bleak

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This is bleak.

I don’t apologise for being bleak; I am exploring my thoughts about the future.

As brain cells degenerate, and functions function less well,

As clarity clouds and anxieties grow,

I wonder about what will be left of “me” in the coming years.

We exhort people to “see the person not the dementia”, and rightly so.

From the outside, we can try to connect with a person’s life, to help lead them back to memories they can still find and enjoy.

Though do we not also lead them back to memories they have tried to forget, and which may haunt them?

But try to get inside the person sitting in that chair, or lying in that bed. Towards the end of their journey, who are they? Who do they feel they are? How do they know who they are?

I’m not a philosopher or a religious scholar. Nor am I a psychiatrist.

But I live and think and write and listen and reflect, and…well…
…….

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Who am I?

Who in this world am I?

What is it that makes me me?

Who am I when I am no longer me?

What is it that makes me me and not you?

And who are you?

How do I know you are you?

I face losing what makes me me in the coming years.

Dementia won’t steal me. It won’t kill me.

My brain disease might though, if the other bits don’t give out first.

I will slowly, imperceptibly, grindingly, lose me.

My body will be here, but I will be gone.

My blood will circulate, my chest rise and fall, my eyes glance round or stare at something…

But I will be gone.

Because I will not remember.

I will not remember yesterday or last week.

I will not remember the calls of birds or the names of flowers.

I will not remember helping teenagers to love Shakespeare and Seamus Heaney.

I will not remember my children being born.

My wedding day, my 50th birthday, my 65th…

What I did yesterday.

Where my wife is.

What I ate for breakfast.

Who, then, will I be?

Because I am what I know, and what I remember, and what I feel.

I am billions of pictures and sensations archived in my brain.

When I cannot access them who will I be?

When I sit and look out at the clouds, or watch strangers passing by, who will I be?

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My uniqueness is my archive of memories.

I’ve seen the same world as you, but I’ve seen it differently.

The smell of bracken is my childhood walking up the Abergavenny hills.

The smell of a crocus or a daffodil is my schooldays in Edinburgh, escaping from bullying and loving wildness.

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The sound of a symphony orchestra is my Thursday evenings in Birmingham Town Hall in my twenties.

The taste of Beaujolais is helping my dad to bottle wine from big oak casks in the kitchen.

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So who will I be when I can no longer remember these things?

My father-in-law had a ten second memory. He was lost.

And he kept trying to escape from something…probably a ship that sunk beneath him in the war.

He couldn’t remember that his wife had died, just kept asking where she was, and grieving every few minutes. Every time for the first time. Again and again.

Who will I be when I can no longer remember yesterday?

I will still be alive. I will still exist.

But I will have no anchor. I will float along, turning this way and that, at the whim of people and surroundings not of my choosing.

I cannot imagine what nothingness is.

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I cannot imagine living behind the locked library doors, my archive lost from me forever.

Swimming with crocodiles

IMG_2024I’m swimming at my local pool. Just started got in. First length.

Stretch, relax, quieten, in the moment…

A new friend I met the other day is there too, and I stop at the shallow end to chat.

She’s talking to someone about a dementia friends session she did at the cricket club. And what she’s doing around the town to promote the cause.

And I say hello and try to join the conversation.

But I’m not there. I’m not zoned in.

I can’t find the answers. The subject. The knowledge.

I start the simple stuff, the how are you, yes I’m fine, stuff.

They’re talking about how you access the right people in the town…

Not to take on too much…

How people living with dementia aren’t seen in the town much unless they’re with someone.

And I just can’t get to what I could say. I’m blank.

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Can’t find the path to the dementia stuff and opinions and thoughts and knowledge that is lying somewhere inside.

It’s there, I know.

I stand in the shallows muttering something trite.

What should I be saying to this person who doesn’t get why you don’t see people with dementia walking around town on their own, independent?

And gradually I search and find the route, like a satnav downloading its map data, and mapping a route to a chosen destination.

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What shall I say? What shall I say?

What’s the right response?

Where is it?

…Everyone is different…

…Not everyone with dementia is at the difficult end of the journey.

…They can live on their own, go into town on their own…

Yup, that’s better…

Found it.

The zone.

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And suddenly it’s ok.

…so we need to make it easier for them to visit the shops, use a bus, see their friends.

At which point I have a very clear route in to where I wanted to go.

It takes time to work out ways into what you’re searching for.

Doing (quick) crosswords I run through the alphabet if I’m stuck, trying as many alternatives for each letter in order, till one clicks into place.

Or I cheat by googling.

Same when I’m searching for names. When I’m writing emails I work through the alphabet until it just clicks. And usually it does. Might take a couple of minutes.

It’s a workaround.

If I’m looking for something at home I have learned to stop, go away, return, and methodically, slowly, go one by one through the items in front of me until the right one turns up.

Look at each one, name it, even touch it, move it…

If it’s still not there after three searches I reckon it isn’t there.

It’s a work around.

Overcoming obstacles

I’ve heard several people talk about finding workarounds to manage their dementia symptoms and difficulties.

Of course, you have to be aware of your dementia in order to know that you need a work around.

You have to know that you can’t rely on your brain any longer to work in a flash.

In less time than it takes to turn your head. Or glance around.

We should share our workarounds.

Then we’d be using them before we were lost, instead of getting out the clunky satnav or just giving up.

Agnes asks for photos of places she’s visiting in advance, so she will recognise when she gets there.

Brilliant workaround.

I write down all the names of people at meetings in sequence around the table. And where they’re from or what they do if I’ve got time.

And I always write and practice what I’m going to say, or might have the opportunity to say, before I get there. Days before usually.

Busking is for those with whole brains.

If I don’t prepare I just get stuck and miss the opportunity to pull together what I know to be true and want to say.

If I don’t prepare, get into the zone, plan the route, I am lost in a map that has no towns marked and where roads lead nowhere.

To fail to prepare is to prepare to fail.

Too right.

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I live with dementia. How can you make my stay in hospital better? (And shorter)

Get rid of the noise. The bleeping. The pinging. The clangs and the ringing.

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Allow night time to be night time, dark and quiet.

Make it more like my home.

Have sofas, armchairs, pictures…

Help me to walk when I want to.

Help me to have a dignified shower or bath of my choosing.

Help me to the toilet, not a commode. And don’t leave me there for half an hour.

Reduce the people confusion, the movement, the congestion, the huddling…

There are just so many of you.

And for god’s sake don’t talk across me. It makes me angry.

Enable me to know where I am, what time and day it is…

Help me eat when I want to, provide finger foods, delicacies, simple treats.

Just put them in front of me regularly. Don’t ask if I’m hungry because I’ll always say no.

Remember my taste isn’t very good now, so please don’t give me bland mush.

Provide coloured plates and bowls so I can see food, with high lips so I can get the stuff onto the spoon.

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Give me drinks in my favourite mug or cup.

And don’t just ask me if I want a drink. Give me one anyway.

Make sure I can hear and see.

Make the light brighter by day.

Do things with me, every day…singing, reminiscence, jigsaws, reading, music…

Use colour and decoration to make this place feel more like my home, calm, enjoyable.

Stimulate good feelings. I may not remember what you said or what we did.

But I will feel better for hours.

Touch me. Hold my hands. Put your hand on my arm.

 

Smile at me. Take time to smile, look at me, use my name.

Tell me who you are. Every time.

Wear scrubs at night. Then we’re all in nightclothes together.

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Explain what you are doing to me. Make sure I understand. Hold my hand. I may not like what you’re doing.

Talk to me about who I am. What I’ve done. My work, my hobbies, my wedding, my childhood.
See me. Not dementia. We are all different.

I’m not demented. I have a disease, and mine is different from everyone else’s.

So find out who I am.

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You see, I’m an expert on me.

Shaking the foundations

Well I’ve had a reminder that dementia does get worse as time goes on.

It’s easy at the earlier stages to forget about what’s coming. You just carry on as before and occasionally have a day when things goes dark and weary. Then you get back up again.

Anyway, why would you want to think about life in five years’ time? Best to ignore it, after doing the right things like power of attorney.

So I was cooking supper. What was it? Simple baked potato, chicken, kale, carrots…

But somehow things became disjointed. I didn’t get each part timed right…undercooked the chicken and had to put it back in the oven, so the kale was overlooked…

And the work area became cluttered with stuff. My iPad, oven gloves, saucepans, the day’s post, plates, cups, knives…and I became confused. There were just too many things to think about. My brain couldn’t hold it all.

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And I shouted and wanted to swipe everything onto the floor. Just clear the whole space. Start again or walk away.

Then yesterday I went to an evening meeting. Which meant driving in the dark, and to a venue which was incredibly difficult to find. Dark, wet, shiny surfaces, headlights not bright…I really felt unsure and lost for a while.

I’ve become a less steady on my feet in the dark. In fact I nearly fell over the other night going to the loo. Need to put a light on really.

I walked Lupin around some big fields the other afternoon and misjudged the light. So the last mile was pretty dark, on uneven fields. Very challenging now, lurching from side to side, though not quite to the ground. Even felt nauseous with the lack of stability.

What I felt for the first time was my foundations being shaken. It’s a very destabilising effect. You immediately lose some confidence, and the future looks suddenly bleak, worrying.

Your home seems solid, safe, reliable. And you just live in ignorant certainty that your home will always be solid, safe and reliable. So you don’t think about it, or worry.

But try standing up during an earthquake. I was teaching in 1989-ish, or whenever the Shropshire earthquake happened. The floor rippled, swayed a little. Apparently our cooker at home moved an inch forward and back again.

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And it shakes you to the core, because what was certain is no longer certain, and will never again be certain. Life changes in that instant.

Everything is utterly changed.

Here’s my elevator speech to GPs

Why should your practice become dementia friendly?

People who live with dementia, diagnosed or not, and their carers, need support to live as well as they can. You probably have between fifty and one hundred patients over 65 with a diagnosis, and up to another fifty who have not been assessed. You also probably have two or three younger patients living with undiagnosed young onset dementia.

People living with dementia have difficulty making and remembering appointments and therefore miss appointments. They need reminding.

Then they have to get to your surgery. They may have to wait for thirty minutes or more in the waiting room; this is unfamiliar and disorientating, and may may increase confusion and agitation.

Can patients affected by dementia book easy access appointments so they don’t have to wait when they arrive? This would avoid agitation and DNAs.

Are your premises decorated in a warm friendly colour scheme? Are floor coverings unpatterned? Is your patient toilet dementia friendly, with a contrasting colour toilet seat and colour coded taps?

People living with dementia need clear signage in places that are unfamiliar. They benefit from specially designed signage, with good colour contrast, large lettering and use of symbols.

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People living with moderate to severe dementia often have difficulty explaining their pain and symptoms. They may be unable to tell you what is wrong. They need extra time and use of simple techniques such as touch and pictures or diagrams.

A person with dementia may think your staff are attacking them when they attach a blood pressure cuff, or prepare to take blood or examine them. Your staff therefore need to be trained to be aware of this and the techniques they can use to get round these perceptions and behaviours.

Customer facing staff, ie all your clinical, pharmacy and reception staff, need to speak slowly and clearly, without being patronising, and make sure they look at the person with dementia when they speak. They also need to ensure that the person is looking at them. They need to be aware of likely behaviours of people with dementia and the causes. Aggression or rudeness is usually the result of confusion and agitation and not deliberate. Behaviour is only “challenging” to the person who does not understand.

Carers find it hard to get support and can find themselves at the end of their emotional and physical tether. Do you know which of your registered patients are carers? If this was recorded and flagged you would be able to make every contact count by asking simply if they are ok and coping, or if they would like some support, perhaps by talking or help accessing respite.

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I can help you develop your practice to be dementia friendly. I can organise dementia friends awareness sessions for all your staff. I can walk around your premises with you and look at improvements that could be made. I can signpost you to contacts and resources to help you.

Becoming dementia friendly and aware, you can support your patients to live as well as they can with the condition and stay as healthy as possible, and you can increase understanding of dementia in the community. You will also help carers to remain healthy and fit and able to provide the good, loving care they want to provide.

It’s not expensive. It doesn’t have to all happen at once.

Why wouldn’t you want to do this for your patients and your community?

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Very much able to live…

Good morning everyone.

What a wonderful event. It’s a privilege to be able to talk to you today.

I live with young onset dementia. I was diagnosed in 2014 at the age of 62. I chair the Dementia Action Alliance which now covers Shropshire, Telford and Wrekin.

There’s a lot of talk nationally about Dementia Rights at the moment…

But Let’s start with some myth busting.

Is a person living with dementia disabled?

That is the question. What do you think? Hands up.

Is a person living with dementia covered by the equality and diversity scheme? Hands up.

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Is dementia a mental illness or a physical illness? Hands up.

Does a person living with cancer have the same right to good timely health care as a person who has had a stroke?

Does a person living with dementia have the same right to good timely health care as a person who has had a stroke?

Does a person living with diabetes have a right to live a good life?

Does a person living with dementia have a right to a good life?

Does a person living with dementia have the same right to use public transport as a person with cancer?

And so on…

Are you with me? We have all built up stereotypes and cliches around health and illness and these dictate how we think. To be aware of these misperceptions is to change them.

So let’s move on…
How do you define “right”? What is a “right”?

Is it a moral right…because we ought to care for people in need?

Is it an ethical right?…because it would be wrong to single out a sub group of humanity for inequitable treatment..

Is it a legal right?…because the law says people living with dementia should get the same access to treatment and care as others?

Does the NHS Constitution specify that people living with dementia have a contractual right to timely, safe, respectful care?

Well…I think all of the above, actually.

Should people living with dementia have the right to live well?

I don’t hold with the phrase “living well with dementia”. It’s not good…it’s shit. It’s a one way journey and you know what’s probably coming towards the end. But that doesn’t stop you from choosing to do things that make you happy. That make you feel you’re doing something worthwhile.

Let’s change living well to living as I choose. Not as others choose for me. Not as others allow me to live.

There’s a phrase coined by Kate Swaffer who lives with dementia in Australia. It is “prescribed disengagement”. It applies to what often happens when professionals talk to people with dementia about what they should or can do with the rest of their lives.

Don’t tire yourself. Avoid places which might be confusing. Don’t take risks. Stop driving. Avoid crowds. Avoid stress. Stop doing the things that you find difficult.

Prescribed disengagement…from life as we know it!

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And absolutely the wrong thing to do. Keep engaged socially. Take risks. Live.

So what then are the difficulties and barriers related to health care for people living with dementia?

Making an appointment. Getting to a GP surgery or to a hospital. Explaining your symptoms and history. Again and again.

Explaining your pain. Deciding whether you want treatment, an injection or blood pressure measurement…being able to say no. Choosing your menu. Needing time to think, to process thoughts and sensations and perceptions…

Finding a toilet. Recognising a toilet. Knowing where you are, what time it is.

Disorientation in unfamiliar surroundings. People you don’t know. Strangers causing you pain and distress.

Do patients who live with dementia have a right to understand, to make choices, to toilet themselves, to eat food they like?

Yes, of course they do.

If you have cancer you get superb treatment and care. If you have a stroke you get specialist care and therapy. We know these help recovery or survival.

But Dementia is different. It does not go away. You don’t recover. You die. But not for a long time usually. You’ve got plenty of time to live. Historically…and, shamefully, still alive and kicking today…there has been a hide-them-away attitude. Out of sight out of mind.

And, as a GP once said to me, if it can’t be cured it must be endured. Why waste money and time on a disease we can’t cure? Why get an assessment and diagnosis if there is no cure? There’s no point in you knowing.

Well I’m here to tell you…there is every point in knowing. And there is treatment for many forms of dementia to reduce the impact for years.

Those who develop young onset dementia, under 65, and there are around 240 in Shropshire, have a diagnosis rate as low as 20%. For older people it’s 70%. Why the difference?

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Well I’m betting it’s because when a 55 year old says they have memory difficulties or that they get stuck in sentences, or disorientated in Aldi, their GP puts it down to work based stress and depression. As they did with me.

They don’t think, ooh, I wonder if it’s dementia…the symptoms are suggestive…let’s just do some tests. No. They give you antidepressants and perhaps some CBT and send you away.

But IT doesn’t go away.

So we young onset people fail to get the medication which would keep us functioning better. And we don’t get that precious time when we can still do those things on our bucket lists. And make wills and powers of attorney and advance directives.

Because later on it’ll be too late.

We just keep flogging on at work, hoping it’ll get better.

And at work, how many employers will make adjustments, provide equipment like an iPad, or find an alternative role, for staff who develop dementia?

Yet do we not have a right to employment, to a satisfying life, a fulfilling life?

Yes we do. Yes, yes, Yes we do.

It is time that we all change how we respond to people who are different from ourselves. Doesn’t matter whether you’re gay, bisexual, Romany, Egyptian, Catholic, female, or you live with dementia…you all have a right to live as you choose, and to be allowed to do so. And to access good quality health care when and where you need it. Some people just need a little more help and understanding than others in order to do so.

Why wouldn’t you want to give this?

For me, equality is not about everyone getting the same. It’s about every individual getting the care and support they need, and being able to live as they choose. And it’s up to all of us to make this happen.

I believe that we can do this. Yes we can. And yes we will.

And to return to the question I posed when I started…

Are people living with dementia disabled?

No. We may have some difficulties with living from time to time.

But we are very much able to live.

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(This is a talk I gave in Shropshire this week.)

 

Who’s afraid of Virginia Woolf? Or Dorothy for that matter

VReflections on patient-NHS partnership working

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I’ve been to a workshop today to talk about revolutionising (or do I mean achieving?) real patient-staff partnership working in the NHS. Oh it was so refreshing and energising to be in a room full of people who get it, and who work hard to do it.

I like this name – partnership. In fact let’s go a step further…equal partnership.

For who is the expert? The patient/carer or the doctor, nurse, manager, director?

Who knows most? Who has the right skills? Who has the loved experience? Who has felt what illness feels like?

Well of course no one is an expert and everyone is an expert.

And who has the power in these relationships?

And who wants to retain the power in these relationships?

Several people today talked about reminding themselves when they walk into a meeting with a doctor that it should be an equal and respectful relationship. But we do have to remind ourselves, don’t we?

I still think I must not take up much of the doctor’s time and fail to ask and discuss questions I should ask and discuss. She’s in a hurry. She’s got a queue waiting.

And when we are in a meeting with clinical or managerial staff about services or experience we still usually feel we are there by gracious condescention. And we mustn’t challenge (rock the boat) too hard or we might be turfed out.

How does the other side view us? Genuinely.

And for that matter, before you shout at me, should we really have to talk about “sides”, like in a battle? It might feel like that sometimes, but it shouldn’t need to.

How does the other side see us? How do they feel about us being at the table?

Do they feel vulnerable? Ready to be shouted at? To be told they do a crap job? By people who don’t understand the pressures they are under?

Or, do they think what a great opportunity to learn whether what we do is the right thing for patients and carers? How can I work with this person to share our perceptions, our experiences, our preferences and our choices?

How can we get from the first to the second? As someone said today, sharing vulnerabilities honestly in meetings resets the tone and hides the baggage. We can get on with the task, find a solution together, rather than fighting our corner and blocking change.

And then, what else gets in the way of partnership?

Trust? A key element of a financial or business partnership is trust. Without it the partnership fails, is dissolved.

We have to be people who can be trusted.

And so do they.

It’s two way.

Trusted to be polite, confidential and honest.

Trusted to listen, respond and reflect.

Trusted to challenge courageously and with commitment.

Trusted to make mistakes and learn from from them.

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So let’s not be afraid of each other. Let’s not take sides.

Let’s work together because we want the same thing.

…………

With gratitude to all you who contributed to this today.