The Human Library…A Challenging Experience

The Human Library…a challenging experience

Yesterday I gave a dementia friends session to a group in Oswestry. Disabled Oswestry, or Oswestry DO. Lovely bunch of people of all ages and backgrounds. Demonstrating how vibrant and active our communities can be.

When you have something to fight for you get up and DO! And they do. Rights. Access. Homes. Equity. And just living as well as they can.

That went well. I was cued in. Ideas and facts flowed.

Then I went to a Human Library session in Shrewsbury.

I am a human library book. One of about eight in Shropshire. And our little library is one of a hundred around the world.

It is a worldwide organisation (http://humanlibrary.org).

We aim to challenge prejudice and stigma and lack of understanding of others.

So there are books entitled Autism, Loss, Grief, Obesity, Polyamorous, Dementia, Gay Dad, Young Single Mother, Blind…

All sorts.

And what is unique is that each is unique. And every one fails to conform to the stereotype of normal in their community.

Human beings search for safety. All animals do, and we are, after all, sentient animals.

We scan for threats. Constantly.

Walking up the high street. In a crowd. On a dark night.

Threats are conceived as something different from what we expect. Something not like us, or our usual surroundings.

And if we are feeling insecure we see threats more than if we are feeling secure, safe and loved.

So, we focus our negative, safety craving thoughts on people who are different from us. Migrants, LGBTQ, religions, intellectual ability, disability…these are the people we may fear.

And they are thinking the same thoughts.

There is safety in numbers, in the herd.

To be different is to be a threat, and to risk being an outsider.

Don’t judge a book by its cover!

This is the fundamental credo of The Human Library.

Borrow a human book and read it. Ask it anything you like. Get to know it.

Allow your preconceptions to be challenged. Open your mind to others.

And see inside the cover.

And when you have finished you will know that what’s inside us is not what you thought. And feared.

So there I am, sitting waiting to be chosen.

Sometimes I am left on the shelf. Others, I am read three times.

A lady comes over and opens my cover.

She asks me questions.

And I stumble. And stare. And try to find a route into the answers.

What did I feel when diagnosed? What were my early symptoms? How do I feel now about the future?

And try as I might I could not cue into that place, that locked away place, where I would easily find the answers.

That morning I was fluent. In the moment. In the right place.

Two hours later, I was locked out.

And I think it was because I had not prepared myself on the way to the library. I had not cued in. I had not found the path because I had not imagined where I was trying to end up.

And in fact I presented a good example of how dementia can affect us. Long pauses. Staring into space as I tried to work out where that path was. Finding an answer of sorts.

She was patient. She smiled. She waited.

But that was the worst reading I have had. Because it was real.

And it was a vision of what is to come.

Guest Poems from a talented mum no longer with us…

This should be seen by everyone.

Which me am I today?

Recently I had the most wonderful email from Tove in Finland after having read my book. In it she told me how her mother was 56 when diagnosed with Alzheimers  and sadly died at 64. In the email Tove said

She was working with the elderly  and helping them to develop their memory. And then she lost her own memory…She was a poet in her spare time and she wrote many poems before it also was taken away from her”

I asked if I could share 2 of them with you as I think they are beautiful…a very talented lady….

Let me stay

among my dreams
and memories
yet a while
Let me see the ocean
in the sunset
and the beach
Let me listen to
grandchildrens laughter
and noice
one more day, please
Don’t run towards me
you cruel reality
Stay
Take
another way
So when you finally

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For crying out loud, fix dementia care in hospitals

I need to write about the Dementia Friendly Hospital Charter.

This week I have learned a lot about the background to this welcome attempt to get dementia related care in hospitals improved.

I may not have every detail right, but this is the broad canvas.

The Charter was launched in 2015 to take forward the 2012 Right Care Call to Action to improve dementia care in hospitals.

The charter was, and is, administered by the National Dementia Action Alliance (NDAA). Their small resource/team is hosted, but not funded, by the Alzheimer’s Society. Funding comes from NDAA funds/donations, and some pots from Government through the DHSC.

The funding is sufficient to pay for very little staff time for this national project.

The Charter was updated and re-launched in 2018, to include a section on volunteers working in hospitals, and a (superb) poster was designed which will promote the Charter model and expectations in hospitals for all staff and hospital users to see.

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A hospital Trust decides to sign up to the Charter and submits their application. They are sent a self assessment form to enable them to test how much if the model they already practise. 

The form is sent to the Charter team and scored, not fir approval purposes, but to enable them to find a buddy partner Trust to work with. 

There is no requirement to submit an action plan, or indeed publish one.

The Trust is listed as having signed up to the Charter, on the NDAA website.

So what’s my gripe?

I have been working with the superb (again) nurse dementia lead at my local NHS Trust for several years. She, like the charter team, is hugely under resourced. The Trust is embroiled in, and swamped by, staff and financial shortages, a reorganisation mess, a maternity care crisis, and a leadership crisis that has led to severe CQC criticism. 

Not surprising then that the leaders, clinical and executive, do not devote much time or thought to dementia.

They forget, of course, that at least 30% of their inpatients are affected by dementia, and that their length if stay is three to four times longer (and more expensive) that the other 70%.

They forget or ignore also that their poor care for inpatients affected by dementia causes awful suffering and deterioration, and in many cases shortens and ruins lives.

This Trust signed up to the local Dementia Action Alliance four years ago. But nothing flowed from it. No action.  No organisational commitment or engagement.

So I wrote to the Trust after Christmas asking the Board to explain what it was intending to do to improve dementia care. I said I wanted a formal reply from the Board, and that I would be happy to attend a Board meeting to hear this.

The (then) Director of Nursing passed the letter to my good friend, the dementia lead nurse, to draft a reply. This duly arrived a few days before the Board meeting I was going to attend, after I had reminded them that they had not written to me.

The Director of Nursing said that the Trust had just signed up to the Charter. My comments about lack of Tier 2 training were ignored, with the statement that all new staff received a dementia awareness session during their induction, and there is a short session in doctors’ annual training.

So I then checked the NDAA website.

Sure enough, they were listed, and an action plan was posted beside their name. Guess what. The action plan was the 2016 version of the local DAA sign up action plan, totally unrelated to the Charter. And not updated since 2016.

This is what led me down this road…investigating just what signing up to the Charter means.

Please understand…I think the contents and aspirations of the Charter are excellent. The new poster is also inspirational, and deliberately so. We designed it so that staff would understand what they should be providing, not just what visitors should expect.

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I come from the school of hatred of tick box tactics. If a Trust signs up to the Charter, I believe they should have to have a firm action plan, signed off and supported at Board level. I believe that resource should be put behind it. 

My fear is that my Trust has signed up to get me off their back. At least in public.

I know that there is no Tier 2 training. Not even consistent Tier 1. Certainly not mandatory. 

I know the Trust has cancelled training of all sorts for many months.

I know that there is no Board level sponsor, other than the Director of Nursing. No non-exec sponsor to hold the execs to account.

I know there is no steering group with representation from all care groups and staff groups, and patients and carers. We tried that but could not get buy in or attendance.

I know that inpatients and their carers report very poor, in fact appalling, care experiences. 

I know that most staff and almost all doctors have no understanding of dementia, and how to provide appropriate, personalised care.

What, then, am I to make of the Dementia Friendly Hospital Charter?

Well, as Covey said, first start at the beginning.

And, as I keep saying, if you never start you can never finish.

So the Charter principles and model are great. And we should celebrate Trusts that sign up.

But let’s remember Dementia Friendly Community accreditation. It doesn’t say you are a dementia friendly community; it says you are taking the right steps towards becoming one.

When a Trust signs up to the Charter it is not even being accredited as “working towards” in any meaningful way. It is merely agreeing, or at worst one person is agreeing, that it supports the principles in the Charter.

There is no requirement for an action plan, as there is for organisations signing up to a DAA or a Dementia Friendly Community group.

There is no requirement to provide updates. And no one to provide them to.

There is no organisational ownership of the Charter process, apart from the almost unfunded NDAA and the volunteers who sit on the national steering group.

There are of course many hospitals that are working along Charter model principles to improve dementia care. And they are doing great work.

Which are they? How can I know? 

Do I look on the NDAA website to see if they are signed up?

Do I look at an up to date progress plan?

And, which is more, how do “we” hold Boards to account for the quality of dementia care?

Or, more accurately, WHO holds them to account?

Currently the CQC inspection model, whether or not you like it (pace Roy Lilley), does not report or assess the quality of dementia care.

But the good news is, as I was told this week, that the NDAA steering group is working closely with CQC to get the Charter model into the inspection process. Including reporting.

That, it seems, is the only way we can hold hospital Trusts to account, and lever improvement.

If this happens…wonderful. It will be a really great step forward. And then Trusts will have to take notice and act.

Of course it is a crying shame that a healthcare provider may only respond to threats. Sticks. 

You might imagine they would WANT to provide good, safe care to the 30% of their patients with dementia.

The Alzheimer’s Society has their very welcome campaign: Fix Dementia Care. But where are they? Why do they not resource the Charter process?

Who in a position of influence and power is actually taking responsibility to fix dementia care in hospitals?

The evidence is out there. Dementia care in hospitals is lousy. It takes lives, not saves them.

NHSE…you design the system…where are you?

Commissioners…you buy the services…where are you?

Yet again, it is left to little old you and me, volunteers in a broken system, people living with dementia, carers, to cry out in desperation.

Help us fix dementia care!

….

To finish, here are some of the comments made to the DAA survey last Autumn in Shropshire, Telford and Wrekin.

Q9 What would have made your experience in hospital better, regarding dementia?

Carer: Nothing. Although once the nurse knew mum had dementia she immediately assumed she had to ask me everything without talking to mum first.

Carer: Not all hospital staff understand about how dementia affects a person and seem to assume the patient is able to answer questions with the right information, and to carry out basic tasks.

Carer: D… did not seem to receive good care from the general nursing staff, but did when the dementia nurses got involved.

Carer: Addressing questions to the carer rather than the person suffering from dementia.

Plwd: PRH – very good. But they didn’t understand language difficulties. Language needed to be condensed. (Simplified?)

Carer: Experience of hospital outpatients has been pretty good and positive. RSH has a very positive outlook on dementia support.

Carer: At Gobowen the staff’s approach was ideal and sensitive.

Carer: Medical staff talking to a family member before leaving, rather than expecting the plwd to remember and understand.

It was a good experience for my mother. As I knew about John’s Campaign I enquired and was able to stay on the ward 24/7.

If they had looked at the This is Me information instead of putting it in a folder and forgetting about it.

The hospital thought she did not have dementia. I think notes should specify the condition.

Acknowledging mum as a person who has contributed to society and not writing her off because she has dementia.

Their understanding of the patient’s needs.

Again, more knowledge, understanding and acceptance.

Firstly, introduce yourself and find out abut my likes and dislikes.

Talk to me clearly. Don’t patronise me and treat me like a child.

Acknowledge that dad needed a little bit extra care and support…

Not leaving him wandering on a ward, distressed and unsure where his bed was.

Not ignoring dad when he repeatedly asked when he could go home.

The staff were extremely dismissive when I asked them how soon dad would be seen.

We were left sitting on a ward from 1am to 6am. When I told staff I needed to go home to see my mother, they were rude dismissive.

His bed space was changed, confusing him further, and he could not find his way to or from the toilet.

No consideration was given to dad’s needs as a person with Alzheimer’s, nor to me as an unsupported carer.

Nothing as we had full access at all times, including outside visiting hours.

Having my medication correctly administered.

Being talked to and listened to properly about my illness and what I wanted.

Being addressed by my name.

Having someone to speak and advocate for me and to get my needs and concerns addressed by staff.

Still in any doubt?

Mr Kipling’s general practice

In Shropshire last year the DAA carried out a survey of experiences of people living with dementia and their unpaid carers. The areas of greatest concern were experiences of care in general practice and in hospitals.

So Shropshire Telford and Wrekin Dementia Action Alliance is concentrating on GP practices this year to get them to become dementia friendly, or at least start.

Here are some dos and don’ts for practice staff. No doubt you can add more…

Don’t expect patients living with dementia to remember their appointment dates and times. Find ways of helping them.

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Do use text reminders of appointments, but if you call us an hour before our appointment we are much more likely to arrive! A stitch in time…etc.

Don’t play music or radio in your waiting area. We need to concentrate on what we are about to say rather than be distracted by noise which is not loud enough to understand but too loud to ignore. Local radio is the worst.

Do use large, contrasty signage to help patients not be confused about where to go.

Do place name signs on doors, not walls, and at around 5 feet off the ground.

Don’t plaster your walls with posters and amateur artwork which will often confuse us.

Do provide information about local facilities, groups or services that we may like or need to use.

Don’t tell patient who is concerned about their memory or other functioning that since there is no cure there is no point in betting a dementia assessment.

Do use the Young Onset Dementia guidance to help you decide whether to refer a patient under 70 for assessment.

Don’t tell a patient that you keep losing your keys or forgetting names and it’s just a sign of ageing.

Do remember that the few drugs available to relieve symptoms often provide significant help, so it is important to get a diagnosis.

Don’t just get frustrated at the lack of support locally for us. Lobby your CCG to get action to improve this.

Do look and smile at us when you meet us and when you speak to us. 

Don’t stare at your computer screen while talking or listening to us.

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Do make your entrance and waiting areas bright and welcoming. Use pastel colours. Provide soft and firm seating at a variety of heights. 

Don’t use dark or patterned floor coverings.

Don’t place a dark dirt catcher mat at the entrance.

Do make sure all staff are dementia friends.

Do require staff who regularly work with people living with dementia complete Level 2 training.

Do make sure every patient who is an unpaid carer is flagged on your system.

Do ask every time you meet a carer if they are ok, and be proactive about providing support.

Do put a contrasting colour seat on your patient toilet, and clear hot and cold signs on or above taps.

Do put an exit sign on the inside of the toilet door.

Do use pictogram signs for toilets and for nurse or doctor consultation rooms.

Do use colour or white to pick out doors that patients may use, but leave others the same colour as adjoining walls.

Do promote double sessions for people living with dementia so they have time to say what they need to say, and to reflect on discussions. So they don’t feel rushed.

Do tell your staff to smile at patients as they walk through waiting areas.  Say good morning. Smile. Put people at their ease.

Don’t march through looking as if you have just sucked on a lemon.

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Do develop a model for sharing care and living planning with your patients. Co-produce it. All professionals contribute. Patient includes what matters to them. Patient has read and write access and can share it as they choose.

Do identify and support a dementia champion on your staff. Make sure they have the passion and understanding and support to make things happen.

Do use the approaches set out in ISPACE (search on line for this guide for general practice).

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Do help patients living with dementia to take their medications correctly. Work with local pharmacies to use appropriate dose boxes or pods.

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Don’t expect us to remember to re-order prescriptions correctly. Find ways to help us, like automatic re-ordering.

Do work with pharmacies to get them to ring patients who have not collected medications when expected.

You cannot do all this at once, but if you don’t start you will never finish.

And, as Kipling might have said, the world will be yours, and everything in it, what’s more, young man, you’ll be a dementia friendly practice.

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Do you want our money?

What’s that noise? 

And what can pubs, restaurants and supermarkets do to get our money?

If you are living with dementia the way you process information changes. This is caused by the brain disease underlying your dementia.

There are several main types of dementia, with Alzheimer’s disease and vascular dementia accounting for around 85% of diagnoses. Two other, less common, forms are frontotemporal dementia and dementia with lewy bodies.

Within these disease groups every person’s symptoms will be different, unique to that person. That’s why we say ‘when you’ve met one person with dementia you’ve met one person with dementia’.

And it’s why we get so annoyed by the media-promoted image of a person with dementia being in their eighties, sitting in a chair, unable to communicate, staring into space, even with a dribble.

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Any disease starts somewhere, and develops over time. If you have dementia you are somewhere on that continuum, with symptoms that can be trivial, or a bit annoying, or quite challenging, or downright disabling.

To complicate this further, we have good days and we have bad days. Even good hours and bad hours. We may know when one is coming, but often we don’t. When the fog descends, sometimes it is just a thick blanket that prevents us from thinking clearly, or indeed doing anything much. But it may also be like fireworks, like sparklers in your head. You can seethe and rage, or be unable to sit still. Or want to sweep everything off the table.

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Everyone’s triggers for rage or explosion are different, but often include noise and visually complicated environments. 

Noise. It might be the clangs or bangs of cups and plates and cutlery on hard surfaces. It might be the hissing of coffee machines. Or it might be musack in the background which you cannot escape from.

Hyperacusis is the name for intolerance to everyday sounds that causes significant distress and affects a person’s day-to-day activities. There is considerable work going on to study the apparent link between the brain disease underlying dementia and hyperacusis.

As the definition states, hyperacusis can cause significant distress. 

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Motorbikes. Empty lorries. Food trolleys with high, loose, mesh sides. Someone shouting close by. Lots of loud conversation in a small space, or a very echoey hall.

Why do these noises gradually swamp our brains? It’s not just because we are getting older and have come to enjoy peace and quiet! It’s because our brains are less able to process this data. It takes longer for the neuronal networks to connect, by-passing the tangles and plaques which are destroying our brains, and to find new routes to process the data, and to access memories.

If I hear a bang I have to work out what it is, and check that it is not a threat to me. That which used to be completely instant and automatic becomes a labour. And that is tiring. And disturbing.

If I am in a cafe and there are a few conversations going on around me, and the coffee machine is hissing and clanking, with the grinder grinding, and the barista banging the used coffee grounds out of the metal holder, what am I listening to? I have got to filter out all those noises I don’t want to listen to. In order to hear the person speaking to me. Or to formulate my words and sentences. Or just to think quietly inside my head.

That is why I avoid noisy places. Noisy cafes and pubs. Noisy restaurants.  

And that is why a dementia friendly environment is quiet. Well sound deadened. With as little echo and reverberation as possible.

Without background music or local radio. My local GP surgery plays the radio so that conversations at reception cannot be listened to. And possibly because they think it keeps waiting patients relaxed. There is nothing more annoying than the constant rattle of radio presenter wittering just too quietly to be understood. Or songs that you really don’t want to hear. They all use up your reduced cognitive reserve, so that you may not be able to think about what you are going to say to the doctor.

What can pubs and restaurants do to help us? To get our custom? To be a place we enjoy going and spending our money.

Have a quiet area. Labelled quiet area. Away from the bar or the cooking area, which is increasingly open and on show nowadays.

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Have walls between different areas, so noise does not carry so easily across the whole space.

Locate the coffee machine away from the public area. Get a quieter one? Serve filter coffee.

Turn the music off. At least in the quiet area. 

Food chain outlets: Train your staff that shouting is not good for business. Plates and dishes can be placed quietly on tables and serving areas.

If your premises are noisy and echoey, use carpet here and there to absorb noise, or wall coverings.

Supermarkets: turn off the music. Keep your announcements to an absolute minimum. Again, at least during quiet shopping sessions. Half a day a week? Could be a real attraction to us. 

What else can you do?

Put some chairs out during quiet shopping sessions.

Get your staff to become dementia friends.

Get rid of those black door mats at the entrance. They look like big holes to some of us.

Reduce notice clutter. Less is more.

Make labels and signage really contrasty, and don’t use all capitals lettering.

Shops can lighten their premises. Nice and light and bright, if you want us to come in.

And turn that music off.

Make sure any steps are really well picked out with bright edging, and in light coloured covering if possible.

Hotels: avoid highly patterned carpets. And mirrors. Keep lifts simple, with large, well-lit control buttons, and without mirrors.

Latest hotel refurbishments seem to go for darkness and mirrors, glitter, reflections. Everything we cannot cope with. We just cannot process all the changes and shapes, and work out what is real and what might be a wall or a hole. 

Hotel Century Old Town Prague - MGallery Collection

If you do this we will not visit you. 

You will not get our money.

Dementia Bereavement

When I was given my diagnosis, by three professionals who each answered their mobile phones during our meeting, I came out and had no one to talk to, nowhere to sit and have a cup of tea, quietly, before driving home.

A diagnosis is a bereavement. 

For the person with dementia it seems like a death sentence. It is the loss of your future. It is terminal. It is a void.

For the spouse, partner or family, it is a bereavement too. The loss of their spouse or parent. The loss of a future together. The loss of a retirement together, after a lifetime of working.

And it is hopeless. There is no cure. There is no stopping the disease causing the dementia.

It is frightening. It can look like the end of life as we knew it. 

It is also what many people regard as the most frightening disease of all. More so than cancer now. And probably the most misunderstood disease.

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So what would I have valued? Someone with the disease to talk to. Either when walking out of the consultation, or whenever it felt right in the next weeks.

To hear that actually life goes on just the same. That you mustn’t stop doing what you enjoy. That you should continue to take all the same risks you did before diagnosis.

And to meet other people with the diagnosis at the same stage. 

I now know how important and valuable it is to sit down with people with dementia at the same-ish stage.

The days and weeks pass and many people don’t know how to feel.

If you are in a positive mood you may think it is good to know what has been causing these small but growing difficulties.

If you’re feeling down you may think you don’t want anyone to know. You don’t want to meet people, because they will think you are stupid, or mentally ill, because you can’t finish a sentence or keep up with them. And you are ashamed that you are no longer normal and able.

You may find that friends and family no longer visit. They don’t know what to say. They don’t understand the disease. They might even think they could catch it off you.

They want to remember you how you used to be, so they stay away. They actually say that.

They imagine you can’t talk or do things any longer because you have this awful, frightening disease. They can’t stand the thought of long silences, and embarrassing forgetfulness.

So how does this make you feel? When no one actually wants to listen to how you feel.

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When you live with dementia you think about it all the time. You question everything you do or say.

Why? Because every trip or mistake or lost word is a reminder that things no longer happen automatically. And if you don’t pause and prepare before you do something you may well do it wrong. Or forget to do it.

And every day you question whether you have got worse. 

It’s not a morbid introspection. People say that their loved ones who live with the brain disease become self obsessed. They become less able to think of others’ feelings and needs.

That’s because you are continually examining your actions and your memories and your words, to find the right ones, or to avoid mistakes.

So I think we end up living two lives. 

One is our inner self, the one with dementia, who feels lost at times, fogged, unable now and then to do things we used to without thinking. And this inner self has feelings and reflections which you cannot share because people don’t want to hear. So you feel lonely, and you withdraw further.

The second life is the outward facing self, the one who bravely gets on with a smile, because that’s what others want to see. This self is a denial. It is living behind a mask.

And this is why we value peer support groups so much. Because the only people who understand us are people living with dementia. We can open up our inner selves. Reveal our anxieties and doubts. We can know that others feel them too. And we can laugh at our mistakes, at getting stuck in a sentence, or just cursing the world.

Peer groups enable us to get rid of some of our accumulated emotion and introspection so we can look out at the world again and engage with others and do things.

We are, after all, the same person as before the diagnosis. We have probably been incubating our brain disease for over twenty years, and have been aware of slight symptoms for several years. The diagnosis does not change us. It may give us some palliative treatment that eases the effects, and it may enable us to get some support when we need it.

But we are the same person. The same things give us joy and make us smile. We like the same food and drink. We can make choices just as we could a year earlier. For better or for worse, they are our choices and we must be allowed to continue to make them.

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As the disease progresses we will indeed suffer at times. We will suffer knowing that we can no longer do or say what we used to. We will need some help now and then. 

But we are still inside, so you need to make the effort to reach into our minds and our memories and meet us where we find ourselves. It may not be the world you know, but please just come with us. 

Don’t tell us we are wrong. Or we shouldn’t do or say this or that. Just come with us into our reality as we recede from yours.

The end is far off; the disease usually takes many years to debilitate us. Help us to do what makes us smile while we can, rather than slinking off into a dark corner to be forgotten. There are times for all of us when things get too much and the fog descends. 

Don’t ignore us when that happens. Just reach out and hold our hand and listen.

Couple holding hands

 

 

Fake news: lies, damned lies, and statistics

“Start with the patient and work backwards.”

Roy Lilley’s signature phrase at the moment. And rightly so.

Ccg? Acute trust? Mental health trust?

They all start with themselves and do what is easiest for them.

They take the path of least resistance … for their own organisation.

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They sit behind walls and look for the simplest to implement. The cheapest. The ones which require least effort and change.

I am really sorry to have to write this. I know there are exceptions. I know there are some organisations that really try hard. They innovate. They change to meet patients’ needs.

They start from the patient and work backwards.

….

Here are some examples of what happens round here.

Four peer support groups for young onset dementia and for carers are closing. 

The trust says they were run voluntarily by their staff, who are soon retiring. 

The trust says this is after a review.

The trust says there is no longer a need for specific groups for young onset. 

The trust says there are now sufficient other opportunities for those attending to find similar support elsewhere. 

The trust says they have consulted with those attending these groups.

The trust says that only cognitive stimulation therapy courses show any evidence for clinical improvement. 

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They are also going to merge the (tiny) young onset service into a single age service, following a review.

They are now providing really valuable home crisis support teams. (Note, crisis. Not before crisis happens!)

They say (seemingly proudly) they have even provided a few beds in their mental health hospital for patients with dementia. (Having closed a dementia ward recently.)

So, where does that leave us?

Well, the group participants were told the groups would close. Then at another meeting someone attended and asked how they felt about this. They told her. The groups were the only support they got. They loved them. They hugely benefitted from talking to peers with dementia. One person was in tears. Nowhere else did they get that sense of trust, that honesty, and that understanding.

The trust says the groups are going to close.

The trust says that there are sufficient other support groups for young onset dementia that their own groups are not needed. There is just one, the DEEP group in Shrewsbury, attended by sevenm of whom just two go to the closing group.

There are 6,500 people living with dementia in Telford and Shropshire. So around 250 aged under 65. 

The evidence for cognitive stimulation therapy, referred to bu the trust, actually shows little change in cognitive ability, but big improvements in social confidence and wellbeing. Just what peer groups provide.

Research around the efficacy of peer support groups for plwds has produced evidence of increased wellbeing, confidence, social engagement, sense of self worth. They allow plwds to re-narrate their lives in their new circumstances post diagnosis. (And positive social return on investment: SROI.)

Subjective comments (from research and from anecdote) show that peer groups, especially when run by plwds for plwds, or by carers for carers, are the most valued and valuable opportunities people can have.

There are no other peer group opportunities for plwds other than dementia cafes and the like attended generally by a few plwds further on and less able to communicate and less independent. These are not groups younger onset people want to go.

Yes, we have a DEEP group project starting now in Shropshire. It’s funded by a national CIC not a local ccg or provider.

There has been no consultation over the change of dementia service to all age. We who live with dementia have not been involved, asked, even informed. We think we will lose the expertise that the one remaining under 65 service nurse has. 

This is disgracefully lazy and selfish.

They treat us with contempt.

They do what they want. What suits them.

They ignore the research evidence which doesn’t suit them.

I got a letter from the Council and CCG the other day, in response to my question to the Health and Wellbeing board about the lack of a dementia commissioning lead (for the last 18 months and the next 12) and the non implementation of our co-produced dementia strategy.

CCG improvement and assessment 2018/19

It told me that Shropshire CCG had last year been assessed in the top rating for quality of dementia care under the Improvement and Assessment Framework. The only two measures relating to dementia are diagnosis rate and care planning/post diagnostic care.

So we have a diagnosis rate of 67%. Yup. Good.

And apparently 90%+ of plwds have care plans.

Eh, what?

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No we don’t. That is not true. That is calling an EMIS summary care record a care plan. The framework requires an annual face to face review re dementia, recording the patient’s wishes for the future, the name if their carer(s), and communication and coordination arrangements for secondary care. 

Are QOF codes being ticked when they shouldn’t be? Or is the whole recording of care plans a fake? 

And for God’s sake, how does this mythical care plan equate to post diagnostic support?

This is pure gaming in a system which is based on numbers, not quality, and certainly not What Matters To Us.

So don’t start quoting how great you are. It’s just emperor’s clothes again. Post diagnostic support? There isn’t any.

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….

These commissioners and providers still act as Gods who believe they know what we need and decide what we can have.

It is appalling that they can ignore national models of good practice. Ignore the people who have the disease. Ignore research evidence. 

We have a disease that cannot be cured, or even slowed. The only thing that you can do for us is help us to live well while we can, to not withdraw, to be able to engage in our communities, and to do what makes us smile.

That saves you money. It makes society a better place. 

And yet too many of you remain behind your walls and take the easy way out.

Start with the patient and work backwards.

(Thanks Roy)

Be A Dementia Friendly General Practice

I want to talk about what makes a General Practice, where we go for most of our healthcare, dementia friendly.

I was diagnosed with mixed dementia nearly five years ago, aged 63. I asked my GP twice to be referred for diagnosis, in previous years, but he said there was no point because there was no cure or treatment, and nothing would change with my medications. What was the point of knowing?

Third time round, two years later, I insisted. After lots of scans and tests I was told I had both vascular (which I expected) and Alzheimer’s (which shocked me).

Result. Donepezil. The drug that woke the rest of my brain up to compensate for the diseased parts.

That same GP is still telling patients the same appalling story. 

I know this is changing across the country, but GPs must learn that we need to know of we have dementia, or something else. Almost everyone is relieved to know, because they can at last understand their symptoms and get on with living.

Of course dementia is not welcome, but just think how your thoughts and whole life become infected when you gradually find it difficult to do the things you have always taken for granted. 

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Doctors are not gods. Patients need to be, and have a right to be, in control of their lives.

So, doctors, when a person under 65 or 70 walks in and tells you about cognitive difficulties, remember it might be dementia. Help them find out. Don’t tell them you lose your keys too: it’s just getting old. Don’t assume it is depression. Or stress.

Now, practice staff, including doctors of course, do you talk to the person beside you or to your computer screen? 

I remember one doctor who did this right through a consultation, some years ago. But just last year a practice nurse did it to me. I had been called in for a follow up to a blood test, but she could not work out why. And instead of turning to me to ask me she just stared at the screen and scrolled through, muttering and ignoring my attempts to explain.

 

This, for anyone, is rude. It blocks communication. It is dismissive. I became angry and shut my mouth and thought of something else till she turned to me. Eventually she said ah yes, we didn’t need to see you did we. 

For a person with brain disease, who struggles to hear, to decode what they hear, to create meaning from a string of words, it is essential that they see the face, mouth and eyes of whoever is speaking. 

It is essential that you staff make a connection. Smile. Put the person at ease. Any sort of anxiety causes instant confusion and fog, and you cannot remember words, or why you are there at all.

Take time. ‘Seek first to understand, then to be understood’.

Receptionists are the gatekeepers, and the face of the practice. Smile. You may be under pressure. It may be a bad day. But the patient is in front of you because they are having a bad day too. Maybe a bad year. And your job is to help them, not make them feel guilty.

When I arrive and sign in the screen either gives me a green tick, or a red cross. “Too late. Go to reception.”

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Dementia, believe it or not, affects awareness of time. It affects memory. It affects your ability to sequence things. So it is no surprise that I increasingly arrive late for appointments, or just miss them. Yes I get text reminders. The hospital ones demand so many button pushes that I want to smash the phone.

But what is the good of a reminder if you have a memory of a few minutes or less. Or if you see a note you write yourself on the fridge white board every day but ignore.

I arrive one minute late. Red cross. Late. Go to reception.

I arrived seven minutes late. Red cross. Late. Go to reception. Receptionist is busy. I wait two minutes in a queue. She tells me I am ten minutes late so I have missed my appointment. I say no, I was seven minutes late. She sucks her teeth and sighs and says take a seat then.

How do I feel? Annoyed. Treated like a naughty child. Am I able to relax and think about what I am going to say to the doctor? No.

Get the system changed. Be kind. Be compassionate. We don’t go to a doctor or nurse for fun. It’s because we need help or advice or comforting.

And by the way, it’s a bit rich being told off for being a few minutes late, when the doctors usually run half an hour late. You just expect us to soak it up, and we do. Because we have no choice. But if we don’t mind waiting, you shouldn’t either. Let’s be equals as human beings and trust each other.

….

Is your waiting room friendly? Is it lines of uniform chairs, or a variety of colours and heights and designs of seats? Does it feel like a prison meeting room or a friendly sitting room?

Do the signs help the patients? One practice I visited had staff names on the wall beside the door, not on the door. Which side did it refer to? 

The name signs were tiny, high up, and a dirty brass colour font on brown. Not large, contrasty, and at 160 cms height. And in the right place.

Another practice uses handwritten names on paper, stuck with sellotape or bluetac. They change around seemingly daily, so we don’t know where to go. Confusion puts us on the back foot before we start trying to explain why we are there.

Does your practice have notices of all sorts everywhere, in corridors, on the entrance door, on the waiting room walls? Do you have racks of useful information leaflets?

Does anyone ever look at them? To a confused person they are just confusing, and reinforce the knowledge that they can no longer understand all this information in front of them. Get rid of it all. If a patient needs information give it to them when you meet them. And explain it.

Do you have a record of every unpaid or family carer in your Practice list? Does it flag up when you pull up their notes? Do you make a point of asking if they are coping, or if their health is suffering because of their caring work? Carers of people with dementia have worse health than those they care for because they don’t look after themselves. So do it for them.

Care plans. Let’s agree that the EMIS (or other) in-house system does not provide a shared plan for living. I think that GPs round here regard (perhaps for QoF points) the system record as a care plan. In this way Shropshire claims 95% of patients with dementia have a care plan! Well sorry. This is not a shared plan for how to live well, and how to meet a person’s needs regarding ‘what matters to me’. So let’s do meaningful plans. The doctor doesn’t have to lead on this, just contribute. But someone in the practice has to be responsible. 

Do you offer double appointment slots? I bet you are saying yes, of course. But do you publicise these? Do you tell all patients living with dementia that they can book a double slot? People living with dementia often need extra time to remember, to think, to fond the words, and to explain. And you will need extra time to understand what matters to them. Please just offer doubles. Better to have a few minutes free at the end and catch up (or breathe deeply) than to rush and end up later for the next appointment.

Are your staff, including doctors, trained to understand and work with people living with dementia? I mean tier two in the dementia skills model. They should be. Because if they don’t understand how can they possibly provide compassionate, person centred care?

And dementia friends awareness is not, repeat not, training. It is just awareness. A brief introduction.

Do you play music in the waiting room? Try asking people with dementia if they find it relaxing or too loud or if it interferes with their thoughts and preparation for their appointment. What’s wrong with quiet?

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So, there is a lot you can do to make it easier for your patients who live every day and every hour with their dementia to get the help, care and understanding they need and deserve in order to live as well as they can.

And remember: 25% of people with dementia only leave their homes once a month. There’s a good chance it will be you who they visit. Make it a good day for them.

Dementia Dos and Don’ts in hospitals

Here is a list of everything I can think of that hospital staff should know, when they work woth people living with dementia. I think it should be in a leaflet that every member of staff learns by heart!

If anyone wants to use them for staff training, please do.

……..

Don’t ask a plwd when they last ate or drank before an operation. Find out from a caregiver and write it down for the person living with dementia to show all other staff who ask. (At least five are likely to ask.)

Don’t ask a plwd if they have had a drink this morning…if they cannot remember they will say yes to please you.

Don’t ask if a person living with dementia wants a drink. Just provide one, within reach. Make sure it is a drink they like.

Always tell a person living with dementia your name, your role, and explain what you are about to do.

Always look at a plwd when you speak to them, and be at the same eye level.

Always make sure they are looking at your face when you speak. Get their attention first.

Try very hard to smile when talking with a person living with dementia. Smile with your eyes and mean it.

Don’t ask a person living with dementia about their medications and health history. It will be in front of you in their notes or letters. Do confirm these things with the caregiver, if the plwd cannot do so reliably.

Don’t just talk to the caregiver. Talk to the plwd, include them. Don’t treat them as if they cannot understand. They may well do so if you take your time.

Don’t shout or talk very slowly, or in a patronising, infantilising way. Plwds are not children. 

Don’t ask a plwd with poor memory to compare their pain with yesterday. They cannot remember!

Do use the Abbey pain scale to assess pain if the plwd cannot communicate this.

Don’t tell a person living with dementia to shut up or to sit down, or to stop wandering around. They want answers to questions, and they need to be reassured. They may be walking because they imagine they need to get somewhere; go along with them, or divert their attention.

Do give plwds something to do. Twiddle muff, doll, toy, a game, a simple task…lay the table for tea for example.

Do find out about the person living with dementia from their This is Me leaflet. Make sure this is on display beside the patient’s bed, or ask to look at it at an OPD appointment before you start the consultation.

Don’t ask direct questions of a person with more advanced dementia. They may not be able to decode it or find the memory to answer it. Find indirect ways in to the subject you need to know about.

Give a plwd as much time as they need to process what is going on, or what you are explaining to them. Wait until they do understand, or at least are calm and accepting of what you are about to do.

Don’t move the bed and person living with dementia, even within a ward. Find an alternative. 

Don’t discharge a plwd patient after 3.00pm. Especially not at night.

Do arrange OPD appointments so that a plwd will not have to wait before going in. This will usually mean at the start of a clinic, morning or afternoon.

Don’t expect a plwd to look after their own medicines. But do get them right. Plwds often have several co-morbidities and therefore several medicines.

Don’t ask plwds to choose food menu items the day before! They may be unable to make a choice at all, so check This is Me for dislikes and preferences.  And they won’t remember what they chose.

Do always use the least restrictive approaches to DOLs. It takes time to care; give it.

Don’t tie plwds to their bed.

Don’t raise bed side bars to keep them in bed; it’s infringing their freedom and may cause them to fall if they climb out.

Do always give the plwd patient the time it takes for you to understand their behaviours. 

Don’t restrict plwd patients’ movement because it suits you. Accommodate them if at all possible, And it usually is.

Don’t call behaviours you cannot understand challenging. The plwd is not challenging you on purpose. They simply may be in a different reality to yours. It is only challenging because you don’t understand it.

Xray machines are threatening and noisy and frightening. Take time to reassure and comfort before starting. 

Don’t assume that because a person has dementia they cannot remember anything. But don’t assume either that they can. Check first. 

Every person with dementia is different. Don’t make assumptions about stereotypes. 

The brain disease underlying dementia can occur at any age. It is not a result of ageing.

Don’t tell a person living with dementia to arrive for an operation or procedure at 7.30 and make them wait hours before being operated on. Do make sure they are first up.

Don’t keep plwds waiting on a trolley in A&E. Move them up the queue. And find them somewhere quiet, to avoid their anxiety and distressed behaviours.

Don’t provide car park pay machines with shiny tiny buttons in a tight cluster, and at about four feet off the ground. Plwds and others with cognitive impairment cannot use them. And then they get annoyed, and distressed, and curse the hospital.

Don’t put black or dark floor mats at entrance doors. Plwds may see a hole and refuse to cross it.

Don’t have black or dark stair treads. Plwds may fall down them.

Do place door signs, like for toilets or consultation rooms, at five feet, in large print, on contrasty plaques. 

Do put the name of a room on the door, not on the wall beside the room.

Do keep offering plwd patients snacks throughout the day and evening. Don’t worry about how healthy these are; just get food into them! Make the snacks dainty and tasty.

Don’t expect a plwd to remember or follow your instructions, for example about not getting out of bed. So don’t blame a fall on the plwd for not following instructions.

If the plwd has a butterfly sticker, make sure you put one on the ID bracelet too.

Do make lighting bright during the day and dark at night.

Don’t park plwds in a discharge lounge for hours. They will be disorientated and become distressed.

Do get inside their world. Find out where they are and join them. 

Don’t tell a plwd that they are wrong, time and time again. In their world they are right. Go with them. It may seem wrong, but just do it.

Do place drinks and food in easy line of sight, and within easy reach.

Do address a plwd by their preferred name, not by your preferred alternative, like matey, or dearie.

Do people still talk to you?

Do people talk to you?

At a Dementia Friendly Whitchurch meeting yesterday the daughter of a lady living with dementia said people stopped talking to her, and stayed away, after her diagnosis.

She said it was such a shame because her mother suddenly lost her friends. She had no one to talk to.

She had no one to chat and laugh with. 

No one to remind her who she is. No one to make her use her mind, find words, retain and relive memories.

They thought it was down to fear. 

Fear of dementia. 

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Some said they might catch dementia from her! (Yes, really. Dementia as an infectious disease.)

Some simply assumed she could no longer communicate.

Some were frightened of saying the wrong thing.

So they stayed away.

How does this affect a person living with dementia?

Well, I will tell you how it makes me feel.

It is pretty fair to say that hardly anyone I meet or know asks me about my dementia. And how I am feeling about it.

Of course they ask if I’m “all right”?

But do they actually want to know, or is it just the usual pleasantry?

And if it is just casual and off the cuff I am not going to start explaining now the black dog has got me again.

The only times I get to talk about what it’s like and how I feel are at the DEEP peer groups. 

Because there we all have it and we all get it.

I have (increasingly frequent) short periods of deep depression now and then, and I am beginning to work out when they happen. It seems to be after I have been with my family or other people for some sort of occasion. 

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I used to think it was fatigue. Or that discombobulation that we who live with dementia get. Fog.

And indeed these may be in play. 

But I now think some of the cause is feeling that no one actually cares about how I feel. If no one sits down with me to talk about my disease and my feelings about my life, or if they make it clear that they don’t really want to “go there”, I think I really am on my own.

It is about identity. Validation. And feeling connected and valued.

I have a terminal disease. I know it is getting worse. And these deep black dogs are probably part of that progression.

I live in a small community…well, on the edge of it really. I have been here for 36 years. I know most people, though not necessarily as friends. And I don’t go round the village shouting out about my dementia. But in this little place I would be surprised if most people were not aware of it.

So when I meet people when walking with Lupin, or chatting in the village, or when people come to the house, or I go out, I have to switch off that dementia disease and act like just normal. Like I am happy all the time. 

Because I am seen as a cheerful chap! They don’t see my black dogs sitting around, waiting. They don’t know how much I think about dementia and its effects. How every little trip or wobble or forgotten task or face makes me question how the disease is progressing.

I have just had my annual driving licence re-application documents. They are a real pain to complete, because when you have several diseases you have to trawl back to dates of consultations with doctors, tests, etc..

And I know that sometime before long I will have to stop driving. I am pretty certain I am quite safe still now. But who knows when vascular disease will take a little step downwards?

That is going to be a difficult time. 

Perhaps I will get an electric bicycle, like my sight impaired neighbour.

Returning to yesterday’s meeting: one person said she had been to a carer training session recently. And the key message was:

“It’s not what you say that matters; it’s how you make the other person feel.”

Learn that by heart. Tell everyone you meet. 

Don’t be afraid of saying the wrong thing. Just be there, offer comfort, and listen.

And above all…talk to us about what matters to us. 

We are on a journey to death. It’s a fact. 

(So are you, but we have advance warning, and also increasingly nasty symptoms in our last years.)

We need to talk, to let out how we feel, what we fear, and what we enjoy. 

There is no reason for you to be afraid of us or catching our disease.

Take time to talk and listen. It’s good for both of us.

“It’s not what you say that matters; it’s how you make the other person feel.”