From all those with dementia

Read Wendy’s insightful ideas and advice about how we with dementia may behave. Accept it please. Any time of year.

Which me am I today?

This is one man's house in Melksham, Wiltshire! He does it for charity :) Festive pic: this is one man’s house in Melksham, Wiltshire! He does it for charity 🙂

From all those with dementia:

Don’t be offended if I get your name wrong this Christmas – what does it matter

Don’t be offended if I put the wrong names on the wrong parcel – it’ll make opening them all the more fun

Don’t keep correcting me if I get things wrong – does it matter?

Don’t be offended if I can’t join in the constant chatter – if you don’t all speak at once I’ll find it easier.

Don’t be offended if I want a bit of peace and quiet

Don’t be offended if I can’t keep up with all the games and quizzes as I can’t think of the answers quick enough.

Don’t be offended if I can’t watch a film all the way through without losing the plot or falling asleep

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It’s there, just waiting, just watching

 

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I can see it. Hidden away. Just grey hints showing through between tinsel and glass and green needles.

Christmas. Thank goodness it’s over.

But now comes the black hole. Or black dog.

There was a page of ideas from the Alzheimers Society tweeted around in early December about what it’s like for people with dementia at Christmas. Things to do to reduce confusion and anxiety.

Good ideas. I hope they worked.

For me Christmas was a time of controlled but high expectation in the days before, and total emptiness immediately after.

This is going to be a difficult blog to write, and you might read it as a piece of self indulgent tear jerking. But I am doing it because, as I often say, if I experience this it is very likely others do too. And if it’s part of the dementia disease process I want to share it.

I want you all to know through these blogs what it feels like living with a diagnosis of dementia, from the start to, well, later on.

So Christmas Day comes, all my wonderful children are here with us, and we do the presents, the food, the drink. The neighbours come round and drink and joke. It’s good.

And Boxing Day arrives. Some other friends and my children’s partners come for the day. We walk, we talk, we drink and we eat.

And I am getting tired by lunchtime. Not sure what of. Could be eating, could be drinking. Could be talking. Could be smiling.

And I begin to withdraw.

Next day I am well and truly in a black hole. I feel exhausted. I feel miserable. I can’t smile.

And the next day the same. Someone calls for supper. I can’t raise a smile. Must seem very unfriendly. Don’t want to talk. Can’t think of anything to say.

In fact I sit in front of the tele and find the Swedish Wallander series, with subtitles and a very blurry picture. And I sit and try to forget what is making me miserable. But I am not sure what that is.

Yesterday the same. My wife goes out and I have quiet in the house for a couple of hours.

I try to get my head together. I go out for a walk. God I’m tired.

In the evening I get a call from someone I have known all my life, and grew up with. We speak a few times a year, meet when something happens in the family. I never know whether she will be up or down. Often down. I haven’t told her about my dementia because her husband died with/of dementia twenty years ago and I didn’t want to upset her if she was down.

She tells me lots about herself, her children, her stuff. When she asks me how I am I tell her about the dementia.

Well if you’ve got dementia I must have too. I can’t remember things, have to write it down, have to ask people what I gave them for Christmas. Then more about herself. And more.

I rather quickly wound the call down and said goodbye.

I was seethingly angry. I had avoided telling her in order to protect her from her own depression. And she did not express a single bit, let alone megabit, of understanding or empathy. Family.

Yes you can tell me that she couldn’t face something she had gone through once. But no, it was not there. It did not register.

And then I saw it.

Behind the Christmas tree.

A bloody great elephant.

And round it’s neck was a label.

Dementia.

All through Christmas no one had asked me about how it felt to have had the dementia diagnosis. How I was with my memory and things.

Cheerful George. Happy George.

There had been one or two jokey comments about forgetting things, not me, them.

And after Boxing Day I found that I was looking into a big black hole which was 2015 with dementia. That my memory, confusion, lack of balance would get worse. I might lose my driving licence. I already know that I am worsening back to how I was before I started Donepezil, which is said to give about 6 months relief from symptoms.

Black hole. Black dog. Whatever you call it, it is just nothingness at the moment.

And then last night I had one of my really bad nightmares (Donepezil induced) which was about my parents and sisters and others when I was a young.

Yes, you could say it’s depression. And it’s not uncommon.

You could also say that I, and others with dementia, especially early in the disease, need to talk about it, to be listened to. So we don’t feel when everyone goes home and we are on our own, and our lives return to the regular routines, that we are completely alone with our disease.

If you think this is a self indulgent piece of tear jerking I apologise.

But if you know someone with dementia, early or not, talk to them about it. Listen to them. Don’t shy away from the subject just because it’s a happy day or a day when you’re supposed to be happy.

Every day with dementia is a day with dementia. It’s a day knowing that it will get worse. And that there is nothing much you can do about it.

If it was cancer I’d have a good chance of beating it. Dementia? No chance.

I’ll try to “live well” again in a few days when activity starts again. In the meantime, I’ll wait for the light to improve.

And writing this is making me feel better too.

Bicester. Dementia friendly garden city

It just jumps up and gets you.

You don’t expect it.

Everything is going well.

Then, where is it, what is it?

I’ve written about road systems before. In Lincoln last week I got off a bus near the station and headed off with my wheelie case.

One of those that seem to be causing noise distress to some, and bruising others, as they trail across platforms and pavements, up and down stairs.

So, I’ve got to get across the main road(s).

In London someone has had the good sense to add labels like look right or look left, or traffic comes from right, etc.

Not Lincoln. Unless I missed it.

So I’m looking at a wiggle of single lane twists and turns, refuge islands, fenced off with gaps to aim for. I really haven’t a clue where the cars are coming from. Which way to look. And no traffic lights.

There probably are lights somewhere, but I couldn’t see them.

I look everywhere, left, right, behind me, left again, right, and dash across.

And I am early in my dementia journey. How on earth others with more confusion manage I don’t know.

I am guessing that they don’t go out. They stay at home.

Last year a report by Alzheimers Society stated that 70% of people with dementia have stopped doing things they used to do due to a lack of confidence. 68% worry about becoming confused. 60% worry about getting lost.

or squashed.

Well it’s not surprising is it.

We talk about dementia friendly hospital environments, colour schemes, signage. We are beginning to talk about designing dementia friendly features into new builds (what about a dementia friendly Garden City, in parallel to NHSEngland’s call for one to be a new model of health care?) Bicester for dementia!

Let’s make transport systems easier for people with dementia. Do the simple things. Bigger signs. Nicer toilets (like the ones at home). Better lighting, especially on steps. Clear labels, repeated frequently.

Not huge expense. But design it in whenever new work or refurb is done. Find the most difficult places (ask us to show you) and start with these.

Then perhaps less people will stay at home, outside of their communities, away from their friends, their shops.

Engagement and activity in social or community activity is known to be hugely influential in people remaining happy, and retaining skills as their brain disease progresses.

So I turned to the young friend who was visiting me last night, who arrived three hours earlier, and as we ate supper I asked him…

I’m sorry, what’s your name?

I just could not find it.

 

 

Am I nuts?

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The cost of mental illness

I’m trying to get my head around the statement that one in four people will suffer mental ill health during their lives.

“Rethink” website states…one in four people are (sic) affected by mental illness.

Mental Health Foundation says… one in four people will experience some sort of mental health problem in the course of a year, and one in six at any single time, ie today.

Mind says broadly the same.

What does this mean?

Say there are 50 million people in the UK.

That’s 8 million people in the UK today, and tomorrow, who actually have a mental illness of some sort.

And it means that 12.5 million will suffer mental health problems sometime during their lives.

How long will this illness last? One day? A year? A lifetime?

How long is a period of mental illness?

Here I have a problem. Brief searches unsurprisingly do not tell me how long an episode of mental illness lasts.

Depression can last many years, or a few weeks. A person may be on an anti-depressant for years, without symptoms showing because they are controlled by the medication. Are they depressed still? How long was their episode?

Bipolar can come and go for a lifetime. Schizophrenia patients can be symptom free in six weeks, but half will experience a further episode.

Why do I need to know this?

What I want to know is on any given day, like today, how many people are in need of support during a period of mental illness?

NHS Confederation gives several estimates of the proportions of people with given mental illness conditions who are receiving treatment. A quarter seems to be a median sort of figure.

So today it is likely that 2 million people with mental illness are receiving some sort of treatment.

Is this just medical treatment? Does it include care? Support? In the community.

I wonder how many people develop symptoms each day and therefore might present for diagnosis on any given day? And how many people don’t?

What do we know?

That today there are 6 million people in the UK who have symptoms of a mental illness but are not receiving treatment.

We know that many of these people will live with these symptoms for a long time. Partly because they are untreated, partly because the illness is chronic.

We might infer that if these undiagnosed and untreated people presented at their GP they would swamp GP capacity.

We might infer that if GPs referred a fair proportion of these patients on to specialists, their capacity would also be swamped.
The chief medical officer stated this year that in 2013… “70 million working days lost to mental illness last year and £70 to £100 billion cost to the economy”.

We might therefore also infer that a good proportion of this £100 billion cost to the economy would be saved if a good proportion of the 7.5 million people with mental illness were provided with treatment and support.

The Kings fund in 2008 reported that treatment and care service costs for people with mental illness in 2007 was £22.5bn. This was projected to rise to £44bn by 2026.

Now, we have to assume that those patients being treated now are likely to be the most costly, including inpatients stays and highly specialised input. So let’s assume that the cost of treating the other 75% of people with mental illness on any one day is another, ooh, £15bn.

And when you treat these people, who currently receive no treatment and support, many of them will get better. Many will have shorter episodes, will not experience recurrence. So this will reduce the number of people with mental,illness and in need of treatment and support.

Of course there will still be people coming into the system for the first time, as the population moves on. But if these people are being treated early on in their first episode many will need less or no treatment in the future.

So where does this leave us?

Current working days lost cost to the economy of current mental illness estimated at £100bn pa.

Current cost of medical and other treatment for the 25% of people with mental illness who receive treatment, around £25bn.

Additional cost of treating the other 75% around £20bn, which lasts for say five years, total £100bn.

After five years the ongoing cost of treatments, after initial huge increase in diagnosed patients, falls back to current current £25bn plus say £10bn, total £35 bn pa.

Savings to the economy in lost days work, say 75% of current £100bn, equals £75bn. Beginning incrementally in year one and rising to maximum in year six. Total savings over five years £175bn.

Net cost of providing treatment for all people with mental illness…

A grand saving per annum, in the first five years, of £75bn.

And thereafter, per annum savings of £65bn.

That seems a worthwhile investment!

Not to mention 6 million less people walking around without mental illness black dogging their lives.

 

Why I do this

 

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I’m posting this “story of me”. Using social movement theory, and some help from my clever wife, it’s what I will say tomorrow at a Patients in Control training event. It’s me persuading them to join me in this movement. I hope it works.

……..

My name is George.

When I was 24 I made what seemed like a big big decision at the time. I left a safe certain comfortable future to become a student. It was the first of many momentous decisions I have made in my life.

I knew I wanted to make a difference to other people’s lives, and in particular their education.
I’d begun to get values.
And they were different from those of my upbringing.
Perhaps it was a bit of rebellion and I was full of angst.

I became a teacher. Later I worked in health and social care, and in hospitals, and in developing patient involvement.

I have chosen to make a difference. I have chosen to get involved.

But what I have not chosen in my life is to have ill health.
Except perhaps by making unhealthy lifestyle choices.

I’m a person with several long term conditions.
I’ve been adding to my collection for a few years now.
I’ve had major operations and minor procedures.
I’ve received the very best and the very worst of what the NHS has to offer.
So I know.

I was only 51 when I had my coronary bypass.
A year earlier I would have probably died, waiting.
But because of the new framework I had treatment in ten days.

Out of the blue.
I was knocked off my feet for a few months.
But I got back on my metaphorical horse and went back to work.
I visited wards and consultants quite frequently, pain here, anxiety there.
Eventually one said he could find nothing else wrong that he could fix so I had to go away and live with it.
That was hard and I felt abandoned.
I still was convinced there was something not right.
And I felt angry.

Three years ago I told my GP that I was concerned about my memory and conversation. And that I sometimes felt disorientated. He said don’t worry. It could be stress, age…I don’t think it’s likely to be dementia.

Two years ago I said the same, but that it was getting worse.
He said well we couldn’t do anything if you had dementia so don’t worry. You’re already on all the drugs for vascular dementia.

Well, I did worry. And so did my wife.

Last year I said I really did want to know whether I had dementia.
He referred me to the memory clinic.

In May this year, the day before my eldest child graduated as a doctor, I was diagnosed with mixed dementia.
It confirmed what we knew.
But it was a shock to have Alzheimers as well as vascular dementia, but it was a blessing in disguise.

I was eligible for donezepil which made an incredible difference to my life.
My brain woke up.
And my life has been much better ever since.

It also meant I could plan for the future.
We did a power of attorney.
We told the children.
We told the neighbours.

We bought a camper van to do the trips we were planning for retirement.

We found out about local groups and activities. And about the disease itself.

And I chose to go public.

I chose to share my story of how it feels to live with dementia.
How it feels to have that diagnosis.
The ups and downs.
The symptoms that come and go.

I chose to get involved with the dementia friends and dementia action alliance movement.
I started the Shropshire Dementia Action Alliance.
I started my blog about living well with dementia.

Why do I do this?
Why do I spend several days each week at tweeting, blogging, in meetings, walking around wards?
Talking to clinicians and commissioners?

Because I want to make a difference for people living with dementia.
Because I can influence change.

Like creating a Shropshire Dementia Roadmap for primary care to use.
Like getting local shopkeepers to give people who are confused a little more time.
Like leading a hospital to adopt dementia friendly environment standards in their estates management plans.

So that people with dementia and their carers in the future have a chance to live well with dementia, living the lives they want, in the ways they choose.

I want people with dementia, and any other conditions and diseases, to be in control of their lives and their health care. Like I have chosen to be.

So what difference has this made for me?

I do stuff around Shropshire and I feel a sense of purpose doing it.
I feel happier.
And I am making life with dementia better for others.

And this way I see a doctor less often.

And what I am asking you all today is…
Join me in this journey.
Join me in taking steps on the journey to put patients control of their lives, their health care, the decisions they make.
The challenge is not too great.
We change the world through small steps, small changes.
Together we can do this.

Suggestions for Better Understanding of AUDIO Communication Despite Dementia Symptoms

This is a remarkable guide to communicating with people with dementia. Truthfulkindness gives real insight into the difficulties faced in understanding, keeping up with and responding to what people say around and to you.
Please read and remember. I too have some of these difficulties, processing sound, needing to see lips, needing time to think before responding. Sometimes more than at others.

Truthful Loving Kindness

819 Blog commun ECT 5in200ppi

Please remember I can only speak for myself.  Dementia is not one-size-fits-all !
My problem with communication is once I lose track, everything after that starts to crumble.
The following suggestions may help me to stay on track and participate in conversations at least in this early stage.

This is my Holiday gift (Chanukah, Christmas, etc) to my own loved ones & those of my friends.

Outline for E.C.T. (Environment, Content, & Timing for Conversation)

Environment:
….A) Visual;
……..1) Make eye contact; note “Positive Physical Approach”;
……..2) Mouth visible;
….B) Reduce background audio and visual “noise” of environment:
……..1) Single person speaking;
……..2) Avoid startling or loud noise;
……..3) Avoid background “noise” (audio and visual);
….C) Bring person or activity to help carry conversation;
….D) Be aware of “invisible” distractions:
……..1) Health
……..2) Hallucinations

Content:
….A) Grammar/Vocabulary:
……..1) Reduce extra phrases and clauses;
……..2) Consistent use of past/present/future tense;

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Things you don’t know you don’t know

 

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I’m beginning to lose more stuff. Memory. Knowledge.

And with this come the lessening of self confidence and the irritation at being reminded that “you did know that because you told me about it”.

Once or twice I’ve had to admit in meetings that I couldn’t remember what was said, who was there, the meeting at all.

And that knocks you a bit.
You feel less in control.
In fact, out of control.
Especially when you are chairing!

Today I was told that a couple had split up some time ago. I said I didn’t know and was sad and surprised.
Yes you did know. You told me. You met her several times and she told you all about it.

Oh.

That shakes confidence.
I don’t know what I don’t know.
I don’t know whether what I do remember is right.

And it irritates.
Because I don’t know whether I did know that, or not.
And if I did, and I’ve lost it, what else have I lost.
And it’s not nice being told you’ve forgotten something.

And I begin understand the advice for carers of people with dementia…

Don’t tell me I know something, or used to know it, just pretend I didn’t know and tell me about it.

That feels comfortable.

I’m still in the halfway zone I think.

I can remember a lot.
And usually I can get back to the picture that is hidden away, find the pathway to it, and remember.

It’s like a picture
Hanging in an attic or perhaps a cellar
There are so many there you can’t find the one you want.
Yes it’s there.
You can remember most of the pictures you bought and stored.
But not all.
When someone shows you it you recognise it.
Remember when you bought it, where, why…

But gradually you don’t.
They slip away.
They stay out of sight.
And you just don’t know they ever existed.
They’re at the back of the pile, like the posters in IKEA and art shops, in the big racks,
And you can’t reach the back ones, can’t see them, haven’t quite got the strength to pull the front ones away so you can see them.

I seem to be getting there.

And as that wonderful American Rumsfeld said,

There are things you know you know,
There are things you know you don’t know
There are things you don’t know you know, and
There are things you don’t know you don’t know.

And that seems to be dementia.

Sit and see the compassion

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Yesterday I was at a local event to co-facilitate training for the “Sit and See” observation of care tool in our community health care trust. It was developed by the wonderful Lynne Phair.(http://sitandsee.co.uk)

I’ve used it a few times in wards and a minor injuries unit to look at the nature of the interactions between staff and patients. Fascinating and instructive.

A health care assistant walks over to a patient lying in a bed, holds his hand, smiles and asks if he would like a cup of tea. Soon she comes back, pulls up a chair and helps the woman as she struggles to eat lunch. She takes her time, goes at the woman’s speed, slowly. She smiles a lot. She tells a few things about what’s going on. She connects.

A Physio sits down beside another, shares a joke about family, listens, smiles, looks at her, asks about her feelings abut going home, what she is anxious about, takes her time, gives her time.

A radiographer tells a boy to keep still during an X-ray. The machinery clunks and clicks, moves around. She goes behind her screen. He’s alone in the machinery filled room. There are two minutes delay. Silence. She asks the boy to stay on the bed for a few more minutes. She returns and repeats this. She’s not horrid or aggressive or impatient. She just doesn’t get it. The boy has an injury, he’s in pain. He doesn’t understand the machinery and the noises. He’s being brave but he’s alone.

A doctor arrives on a ward for a lunchtime round. He talks to the nurses at the station. He strides purposefully across a bed bay, picks up a file of notes, and walks back out. Three men in their beds watch him. They don’t see many people. They don’t get much chance to talk. To say good morning. To brighten up their monotony. The doctor says nothing, doesn’t look at them. They don’t exist. They’re on a production line.

An anaesthetist walks through the waiting area outside a theatre. He comes over to the patient and smiles. He stops and shakes his hand, asks how he feels. Puts him at ease. The patient is about to be cut, probed, wrenched, put right. And awake throughout. It’s disturbing. But the man who will be looking after him has made contact, smiled, chatted, built a relationship of trust and warmth.

“Sit and See” allows me to see this happening. To get inside the mind of the patient. How would I feel if I were that patient? How do I feel when a nurse turns away while talking to me? Or calls out hiya petal as she strides across the bay.

I look at connection, compassion, understanding, listening, taking time and trouble, attending to little things that matter to patients.

Not at technical stuff. Other than washing hands and things like that.

It’s interactions that matter.

In a hospital, or a consulting room, or a waiting room, or outpatients reception, or an X-ray room, we are vulnerable. We are usually in pain, or have long term illness. Our worlds may be about to turn upside down. We are frightened to be assertive, to ask, to enquire. They know best. They hustle and bustle around. They don’t have time. There are all these people waiting. I can’t take up their time. They’ve got better things to do.

Er, well, no.

But it’s hard to change that dynamic, that relationship of doctor patient. Knowledge. Power. Education. Style.

It’s hard to change the vulnerability of lying in a bed on a full, busy ward.

It’s hard to change behaviours that are embedded in busyness.

It’s little things that change the world. A smile, a touch. My name. Stopping to say hello, close up, looking at me.

Thinking, what would I be thinking and feeling in your place? What would I want now?

“Sit and See” is about the little things that change the world.

Compassion, empathy, kindness.

……..

Have a look at this blog by Jane Jones of the Health Foundation about compassion in care.

http://www.health.org.uk/blog/compassion-dignity-and-respect-are-fundamental-aspects-of-care-not-add-ons/?utm_source=charityemail

 

Passion + words = actions + change

The great hall in Westminster

The great hall in Westminster

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I went to the Dementia Action Alliance conference last week.

The highlight for me was Jeremy Hughes, CEO Alzheimers Society, speaking about the progress of the Alliance nationally.

60% of members of the national alliance have not updated their action plans on the website.

We have around 2,350 national members, compared with 40 four years ago. Brilliant.

But Jeremy asks whether inactive members should be removed as members. Better to have fewer active members doing things.

I totally agree. And that brings me back home.

Our Shropshire Dementia Action Alliance is great, with almost twenty members doing various things to make a Shropshire more dementia friendly. Excellent.

We need more members. More actions. More change.

A friend in the alliance said to me recently I don’t feel like I am doing anything. Let’s organise an annual conference in Shropshire to promote friendly approaches to people with dementia and their carers. Great idea, and we start talking about it next week.

Are the local members, who are also national members, updating action plans? No.

Are they doing things? Yes.

Durrr.

Are our newer local members signing up with action plans? No.

Are they doing things? Um, I think so.

So what is missing?

Is it organisational ownership, or reluctance, or governance, or risk management?

Is it lack of sponsorship at the top of these organisations?

It’s all very well being a social movement, and working at the ground level, but real actions are needed. Real changes.

We need to use our networks, within and without our organisations, to spread the passionate commitment to change. We need to use our social media, our telephone calls, our casual meetings…to spread the word.

To talk about dementia.

To make change happen.

And to get commitment at all levels of organisations and communities.

Jeremy Hughes spoke about Dementia Friends training being the start not the end of the process. It’s great to open people’s eyes to the new paradigm of living with dementia, seeing the person not the label. Understanding what is in their mind, not working from your own.

But we need change. Actions that bring about change.

Changes to the built environment in hospitals, shops, council offices, gyms, shopping centres.

Changes in how staff interact with people with dementia, in transport, shops, hospitals, hotels, banks, garages.

Changes to how we support people with dementia after diagnosis, and their carers, to keep engaged in their communities, to get brief but available respite opportunities, activities that energise and activate.

Changes in attitudes of medical professionals and all staff working in the health and care sectors, at all levels of care, so they understand the new paradigm. So they see the person not the label, not the disease.

Medics can’t cure it, but they can help to make it possible to live well with it.

Social change movements are most effective when they operate through social networks. (NHSIQ and Helen Bevan have shown this very clearly. Have a look at “The Edge”).

So we all need to use our networks, all our contacts, every opportunity, to tell people about living well with dementia, and to get them to feel our passion for change.

Don’t be frightened of accusations of hobby horses and cracked records. Whisper, speak, sing, shout…whatever suits you and where you find yourself.

Develop your own personal “elevator speech” which you use with people you meet. One minute to tell them why you feel passionately and why it is essential to change organisations, environments and communities so they become dementia friendly.

Change will happen when we work together, with passion.

Actions will follow from words if you feel the passion and begin see the intolerable situations around you.

Good luck.