A Doctor’s Dementia Primer

Doctors are trained to cure patients, or, rather, cure diseases.

They assess symptoms, diagnose, and decide treatment.

Surgeons cut and sew. They mend people. As a cardiothoracic consultant said to me the day before my coronary bypass…

‘The bad news is, you are going to die. The good news is, I can save you.” And he did.

Anaesthetists make it possible for surgeons to cut and sew you. They see a body as a system and understand how everything is linked and interdependent.

I imagine physicians do too. They seem to be, well, just experts on everything!

Psychiatrists work out what is going on in the brain and endeavour to deduce treatment for symptoms that are not the norm or expected, or that cause misery or pain.

General practitioners know enough about almost everything to be able to point us in the direction of an expert, when we need one, and to provide low level treatment when we don’t.

Palliative care doctors…now, they are interesting. They deal with terminal illness. They know they cannot cure, and work to give patients best possible quality of life, free from pain, until death.

Think about dementia.

It’s a physical disease in the brain. And it is terminal. Incurable.

Cells in the brain die or connections between cells tangle and stop working. At the moment this cannot be stopped or even slowed.

There are some medications which speed up healthy areas of the brain which then compensate to an extent, in some forms of dementia, notably Alzheimer’s Disease.

For some people, higher levels of education, IQ, or intellectual training, create ‘cognitive reserve’, and this helps balance against the deterioration in cognition resulting from dying brain cells. So symptoms become evident more slowly and later.

Imagine you are a doctor who has been trained for ten or fifteen years to know everything about an area of disease, such as kidneys. Or orthopaedics. Or bowels. You will not know anything about dementia, beyond your few hours at university on the subject, or your day to day experience of meeting patients. And of course what you pick up and ingest from day to day ordinary life.

Imagine you are a doctor who sees things as right or wrong. As healthy normal, or diseased. Your job is to change diseased into healthy. Or at least to remove or stop the disease.

Imagine you know very little about dementia, except that it is incurable.

Imagine your knowledge of dementia is that it affects memory, and that a diagnosis therefore means a person cannot remember anything.

Imagine you are a GP who sees a dozen patients a week who live with dementia. And another few who may exhibit or report cognitive difficulties.

‘There is no cure for dementia. What is the point of referral for assessment?

‘Dementia is about loss of memory. Dementia means you cannot drive. Dementia means I cannot do anything to cure you.

‘What the hell do I do?

And, of course, there are almost no services or support out in the community for the patient in front of you.

‘This is insoluble. And it pisses me off. And I am helpless.

……..

Luckily things are rarely as green or red (sic) as this. How many GPs actually don’t want to do their very best for their patients? Thankfully very few. Yes, they are being ground down, but they are humans!

But the question remains, what in reality can they do for their patients?

And what difference would a full understanding of life with dementia bring to any of the doctors in any specialty?

Well here is a list of what every doctor should know, and what they can do, to help people living with dementia, diagnosed or not, live as well as they can.

……..

1 Dementia is not about just memory.

2 Terminal, irreversible, unstoppable, brain disease results in dementia.

3 Every single tiny action is controlled by the brain, and will be disrupted if that particular bit is diseased. This includes things that happen without active thoughts…like digestion and bowel control.

4 Brain disease therefore may and does affect any element of a person’s physical and mental existence, from balance, to continence, to word finding, to mood, to memory. And much more.

5 Brain disease can present symptoms at any age, even though most cases will be at 70+. 5% of people with dementia are aged between 30 and 65. Watch out for these, who you may think are stressed or depressed.

6 People with a diagnosis often retreat into isolation and despair. They feel bereaved. This makes their symptoms worse, and their lives miserable. Your job is to enable them to get back into their communities, to socialise, to do what makes them feel good and smile. If you do that they will not be visiting you so often.

7 You cannot expect to understand a person living with dementia in eight minutes. The person needs time to gather thoughts, find words, reflect, communicate. And you need to ‘hear’ them, so give them double appointments. Fetch them back for a proper session. It will save you time in the future.

8 Remember, above all, that just like any other disease, there is no one template that fits all. Surgeons find variations in anatomy which they work round. A person with dementia is like no other person with dementia. Who knows which of the 50 billion brain cells are affected? You certainly don’t. Understand/see the person in front of you, not a stereotyped label.

9 Do not assume that if a person has difficulty remembering things (and that does not affect us all) there is no point in telling us to do something. Do, however, help us to recall what you said. Write it down for us, or ask us to do so. Ask us whether we use any tricks at home to remind us, like Alexa, or post it notes. Help us get these invaluable aids to living.

10 In a hospital, when you talk to us come down to our eye level. Sit on our bed. Draw up a chair. Come close. Let me read your lips. Talk to me. Allow me time to take it in, reflect, and answer you. Allow me time to ask my questions. If it’s noisy take me to a quiet area for our conversation, or get others to be quiet. Write things down for me to keep and read later.

11 If I am upset and behave in ways you don’t understand, it’s because I am frightened or in pain, or just don’t understand what’s going on. Find out what it is. Don’t drug me. Don’t tie my wrists. Don’t lock me in. There is always a reason, and you can do something about almost every cause.

12 Learn about my life from my family and make sure you read my This Is Me document. If I don’t have one make sure I get one! Use what you know about me to talk to me about what I can remember from my past, and to find out what gives me pleasure. My preferences and habits.

13 Remember that if you take time to understand me I will stay in your hospital for a shorter time, and you are less likely to see me back again. It will be good for me too!

14 Every time we meet, tell me who you are and what you do. If you need to do something to me, like take blood, manipulate my leg, palpate my tummy, take time to explain to me before you start. I may not understand if you cause me pain. I may think you are attacking me. Or you might remind me of a horrible experience from childhood, like abuse.

15 Be patient. Smile. Take your time. Even if you are run off your feet and knackered.

16 Assume first that, given time, I CAN understand. Assume I have capacity. Assume I can make decisions. (Even if you disagree.) Only if it is clear after trying that I cannot, talk to my family carer or friend. But check first that this is the person I trust and who knows me best. This might be my neighbour if family rarely visit.

……..

I could go on, and on…but these are what every doctor or other health professional should remember and live by.

You CAN help us to live well, as well as we can, and to enjoy happiness.

We CAN continue to socialise, to do what makes us smile, with a little help and understanding.

And towards the end you CAN enable us to die well.

Exponential chaos. What the hell is going on?

I attended my local CCG monthly public meeting this week.

I go now and then, usually if there is a current furore over something.

The maternity investigation at my local hospital? 900+ cases over 50 years now being looked into. Avoidable deaths, damage and awful experiences for mothers and babies.

The farcical reorganisation of our hospitals in Shrewsbury and Telford, the cost of which has risen from £312m to £498m before the business case has been approved. Including at least £100m for backlog repairs in a 50 year old concrete hospital.

(Dur. Build a new one!)

226 12+ hour trolley waits for admission through A&E in two weeks this month. Exponentially catastrophic trajectory since the last reported (worst in England) of 60 in November!

Those poor staff trying to stop the tide. And those poor patients getting, obviously, poor, probably unsafe, care. Dying sooner. In pain. Discomfort. Frightened.

I no longer know who is to blame.

Apart from lack of planning and funding over ten or more years. Lack of facing the future. Lack of social care. Lack of decision makers capable of doing their job.

And that comes down to government and health and care system leaders.

We are where we are. But we/they do not seem to be able to grasp what needs to be done NOW.

When asked why the acute hospital is failing so spectacularly, our CCG says ‘because of increased demand’.

Dur. Yes. And…? What are the causes of increased demand? And why have you (and other system leaders) not been working on this and reducing demand since the pattern started?

Yes, you are developing Care Closer to Home, to manage a small number of high risk patients out of hospital.

But if the population is getting older and becoming more frail in later years, (instead of dying!), could you not see this coming?

Why the huge exponential increase in the last two years?

If there is nothing that will prevent this, we need a lot more beds and staff. (Well we probably do anyway, as bed and staff numbers gave been falling (whittled away) for years, in the name of efficiency (and funding reductions).

If there ARE things that can be done to prevent need for admission, and attendance, why on earth have we not made serious efforts to do these?

We are, I think, shoals of fish floundering in an ever receding sea. No one knows what to do.

In the American system, sick people who cannot afford insurance simply don’t get treated. So in a sense the system can never fall over.

In our system, we expect everyone to be treated, but refuse to pay in the funding that such numbers require.

Result? Chaos. We get what we pay for. We get what our government gives us. We get what our system leaders can manage to organise.

(And perhaps what the Tories secretly want to happen.)

……

Why did I waste three hours of my life?

The reason I sat for three hours in the front row of the public seats this week at my system leaders’ (CCG) meeting, was to protest silently about the continuing lack of care or support for people living with a diagnosis of dementia.

I wore a tee shirt that told them they were ignoring 3,800 people with dementia in Shropshire, who live with ‘terminal brain disease’.

And on the back? ‘Equality Act’.

And, yes, they ignored me. There were some looks and smirks. No one approached me. No one asked me about it. And dementia received the usual accolades in the Performance Report.

71% diagnosis rate…above target.

80% of those diagnosed had care plans and had had a face to face review in the last 12 months.

And that was that.

Only, they are lying.

We do NOT have care plans. And we do NOT have face to face reviews of our non existent care plans.

How do they get away with this?

GPs get paid for these fictional reviews.

And we do not get any meaningful support to live well with our brain disease. We do not exist unless we are likely to be admitted to the mental health dementia ward. At which point a crisis team intervenes.

And 35% of inpatients in our overstretched hospital have dementia and stay three times longer than those without.

What the hell is going on!

I know who I am

I have banished alcohol from my life.

I am an alcoholic, and I have decided that I will be a better, happier, more productive person without alcohol.

And I will be a better husband, father and grandfather too.

I might even live longer, though that is a mixed blessing.

I am posting this blog because I believe that part of changing my life is admitting in public that I have been addicted to alcohol all my life.

My parents drank too much, I drank too much. I learned from them that the way to escape from the stress and upset of unhappiness was to drink.

My parents were very unhappy with their loveless relationship and with their lives. My childhood and schooling were abusive, and I have never escaped the consequences. I was born into the comfortable, professional middle class, sent away at 11, bullied mercilessly, and totally lacked the skills and confidence to stand up to it all.

I adopted tactics. Keep away from groups, teams. Do solo activities. Be alone. Drink. Hide. Forget.

Chronic lack of self esteem, fear of male environments, anxiety…I have managed them, lived with them, but they have nearly destroyed me.

I am not alone in this. Either in alcoholism or abusive, loveless childhood. There are many others.

I have tried to change many times. During a long illness 25 years ago I stopped drinking for four years, without much difficulty. Then I slipped back. Slowly but inescapably. Work pressures, stress, anxiety…

I can go a few evenings without a drink, but then I may get a little elated and can’t stop. Or I just think, why the hell not?

I usually have had a drink every evening, while cooking, sometimes before. Not during the day.

And after a drink I lose my ability to control my decisions. So I do unwise things.

I buy things I want (but may not be able to afford). And doesn’t the internet make that so easy!

I say things which are a little (or a lot) rude or unhelpful.

I eat more than I need and should. And then more.

I have another drink. And another.

I lose my conscious control.

And my dementia is part of all this. Because that too has loosened my conscious control.

Luckily, after diagnosis I was prescribed donepezil, and this restored my ability to control my language and actions. My conscience or my inner voice of control was restored. But alcohol damages it again.

Alcohol also destroys my balance. I just fall over after a few drinks. Wobble doesn’t come into it. And again my balance has deteriorated with brain disease.

So I need to push alcohol out of my life.

I have moved all alcohol out of my house now, given to my son to store, so we can use it at parties or give it away. But there is none in the house. And that is important. I am not strong enough if it is readily available. Yet.

This is not going to be easy. I know.

I will probably have many occasions when I gasp for a glass.

I gave up smoking in 1979, after six years or so. That was relatively easy, but I still have occasional urges to buy tobacco and papers.

Alcohol will be the same.

I read a piece in the paper over the weekend about a woman who similarly removed alcohol from her life. Lots of what she said chimed with me.

The pretence that just one glass was really not having a drink at all that day.

The fear of being dull socially if sober.

The lost mornings (and sleep) when I have been pretty useless. Even just a little bit.

Not being as sharp as I might.

So, it’s gone.

And I have to keep my mind in equilibrium to make sure I can do this. I will find ways of being calm, of reflecting, of enjoying simplicity and quiet.

My five ways of wellbeing mantra will keep me going, as long as I remind myself regularly.

And I thank my wife for supporting me in this, as well as tolerating me for so many years. I have given much cause for misery.

Of one thing I am sure.

Dementia and alcohol do not mix well. My fragile hold on reality and physical control cannot survive the numbing effects. And having used alcohol to escape my demons for 60 years I have to face them.

And I have written this in order to publicly admit that I am banishing alcohol from my life, and to apologise for the times when I have allowed alcohol to change my behaviour into boorish, rude, foul mouthed, bad manners. If you haven’t seen this, you are lucky, and I am glad.

But I know who I am.

Onwards, upwards, in yer face

Well, I suppose it was to be expected.

Nearly two weeks off. Family home. Christmas feasting. Diet broken.

Our Christmas day was lovely in its way, but the noise and people drove me crazy.

And articulately crude. (Sorry)

Then some lovely weather. Dry, good to walk in. Birds confused and singing spring song.

Out in the garden, digging a new patch for more flowers and veg.

Ordering seed, dahlias, gladioli, chrysanths.

Always a great feeling of spring round the corner…

And now it’s nearly time to start again on the other stuff.

I haven’t done nothing. My CCG got a long analysis of their board papers since April 2017, looking at references to dementia.

Searching (acrobat made it easy) for any mention, any statement, that dementia is on their radar, in their plans.

Searching too for any equality data or statement relating to dementia.

Of which there was none. Of course.

I asked by FOI last month for every Equality Impact Assessment carried out in relation to dementia since January 2017. The answer was: none, because there was no need. Qualified by saying that, of course, the CCG had carried out many Equality Impact Statements in other areas during that time.

No need? For God’s sake!

So I have asked how they know that they are complying with the Equality Act 2010 in relation to people living with dementia, and how providing dementia companions (navigators/advisors) in 20% of the county but not the rest counts as equality (equity) of care.

There is no EDS2 assessment in the board papers over 33 months. Having been a member of the CCG group that looked at EDS2 and public participation until 2016, when the group folded, I rather think none has been done at all. So I have asked the question.

What do these people think they are doing? Rights are not optional. Fairness is all we ask for.

If it were cancer…! Yep, you know that one.

And this is the CCG that has stopped all public questions at their meetings. Only advance written submissions are accepted, and responses are printed papers left on chairs at the meeting.

That is how much they welcome public participation and information sharing.

Yes, they have had a really hard bashing over our hospital reconfiguration plans…for four years…which no one in Shropshire has the ability to sort out properly.

(Cost of £312m during consultation is now £490m and unaffordable. And they didn’t see that coming? Methinks they hid that one away the day it dawned. And they want to refurbish a crumbling hospital with £100+m outstanding repairs! Rather than just build a new one on a better, fairer site.)

As I say, the CCG has had a bashing for years, so they closed it all down. That’s the way to earn your public salary providing healthcare for your public. Close us out.

Do to us, not with us.

[Did you notice that this morning I have really bad back ache? Must have tweaked something lifting a large pot yesterday. Feels like I have a large rusty nail sticking in/out. So perhaps I am a bit crotchetty today.]

So what will 2020 bring for me and my kind?

Shropshire CCG may decide to fund Dementia Connect (Alzheimers Society), ie dementia advisers, across the county.

Or they might decide to extend Dementia Companions (navigators) across all Shropshire.

They just might require the Memory Service to provide meaningful post diagnosis support for everyone, rather than just those on dementia related medication. (And it’s not meaningful, by the way.)

They might work with ‘us’ to introduce co-produced living plans that focus on what matters to us.

They might carry out an equality impact assessment to establish whether people living with dementia are discriminated against though their CCG choices/decisions. (‘They are’)

They might insist (and monitor) that dementia advisers/companions/navigators are fully skilled up to work effectively with us. (As committed in the Dementia Strategy, but never followed.)

They might, even, choose to meet some of us and work together to devise better care after diagnosis (palliative care from diagnosis of terminal disease), ongoing support when we need it.

We are getting well up the richter scale here, of course…

[I need to say, since he may read this, that our CCG dementia lead Tom is great, and working closely with us. (I taught him English for a year, so it’s understandable.) The question is whether he will be listened to?]

And then, away from the CCG, what else is going to happen?

There will be the local health economy dementia steering group, which will try to get decision makers (to attend) to improve our services, and introduce new Living Plans.

The local DEEP groups project to establish up to a dozen DEEP groups across Shropshire market towns. Five so far. Ten would be a real success.

Our Admiral Nurse research project with DEEP groups across the country. The questionnaires will go out later this month.

And, for me, the Dementia UK LEAP group which comes together to provide insight and critical friendship for the organisation as it grows the band of Admiral Nurses across the country. Over 300 now I think. (Not, of course, across Shropshire yet, though one care provider group has employed one.)

I have almost joined my acute NHS trust’s new Equality and Diversity public involvement group. Almost, because it has not yet met and I have to attend some training sessions first, it seems.

Then there are other things I have been thinking about…

There’s the local DAA, which is forming a steering group with officers, in order to run a little more formally as a small charity. I shall probably ask to join the group without an official role.

Things will come up. Conferences, speaking opportunities. DEEP area meetings. Perhaps a DAA conference here in Shropshire/Telford.

I love those speaking slots. Yes they feed my ego, but they are exciting and I always meet lovely people, some I know, some I don’t.

….

And there is the garden, the grass, and Lupin. And getting to a beach for that exhilarating salty air, and inspiring views over the archetypal rhythms of waves.

And someone (who will remain anonymous) has suggested I write a book. Thanks for sowing that thought worm in my head!

It’s like back ache. It goes away and you stop thinking about it, and then a few days later returns, a rusty nail in your spine. And you spend an hour at 2.00am wondering what the hell it will be, contain, look like.

There’s lots to do, and time is running out. The hour glass is emptying.

Clive James’ recent death touched me. A fine, supremely intelligent and witty man who left us some wonderful poetry.

Forgive me, I don’t think I am about to die. I just recognise that every day I gets closer to being unable to do things that really matter to me. Like all of us, I must make good use of every day.

And as the labour politician Tom Watson, who recently resigned, wrote in the Guardian this week, I must surround myself with people who are relentlessly positive, rather than those who sap your energy and will to live!

Onwards, upwards, in yer face! Game changers. Hell raisers. Let’s get to it.