Grounded

I’m sitting in the garden at my son’s house. It’s early morning, and traffic is thundering distantly along roads and lanes, coming and going, people going to work, lorries, tractors, manure.

 

I am staying here for ten days to look after three dogs, including Lupin of course, and the house.

A bit like going to a hotel for a holiday, except I’m on my own. I’ll be carrying on with my usual things. A meeting today. London tomorrow. Local health economy dementia steering group on Thursday.

And entwined around these visits are three dogs and an unfamiliar home. 

For days I have been wondering how I would organise myself. Make sure I had everything here. Get to meetings on time. Exercise the dogs. Go home to check things. Take pills regularly. Not break my diet.

That’s already done…on day one. A kitchen and fridge full of stuff we have got rid of at home. What did I expect?

But the thing I am writing about is the constant grounding I need. 

If you have impaired ability to ground yourself, without having to think about it, you have to work at it.

All the orientation signs and marks are missing.

The routine is broken.

The daily milestones and signposts have been removed, and you cannot be sure you are heading in the right direction.

People who don’t rely on routine, and remember where they put things down, and what has to be done before leaving for a meeting…these are the lucky ones who can dislocate and relocate without a thought.

So I have put more reminders than usual in my ipad. I’ve brought my own coffee maker (the wonderful Aeropress) and tea. And I just keep thinking through my day’s events, how I will get there, time to leave, where next…

No more than anyone else would do…but definitely harder work than for many.

It’s tiring never being able to switch off. 

That’s why we who live with dementia find formal meetings tiring and difficult at times. You really have to concentrate to keep track. 

Yesterday I was at a local mental health partnership board. There because dementia is under mental health! 

Yes, I agree, it shouldn’t be. But it is. 

So it was my first time there, and I wanted to just get the lie of the land before opening my mouth.

Introductions around the table…classic…people are ‘cold’ still so they try not to be noticed. Speak quietly and quickly. You cannot possibly work out what they said before the next one starts, let alone lock it in the memory.

Then, the diarrhoea stream of acronyms was just, well, like swimming through shit.

Perfect example of professionals failing to understand the needs of the many ordinary lay people around the table. Many of them with mental ill health and trying to be part of a ‘partnership’.

As a new boy I chose discretion yesterday. Next time…there will be blood…and yellow cards.

“I want to speak”

We were taken through the early years of the five year mental health plan. The key priorities for action, and therefore for new funding.

(Think you know where this is going.)

Suicide…of course.

Younger people, schools, college…of course.

Addiction…of course.

Dementia…NOOOO. Of course NOT.

Hardly got a mention.

So that was my trigger.

Excuse me, but I feel very uncomfortable here. Dementia has not been mentioned in these documents but it is (wrongly) lumped in with mental health. Is it seen as not important? I came because I wanted to influence for improvement in dementia care and support services. Was I wrong to attend?

Nodding heads, when I mentioned dementia. Nodding heads that dementia is caused by physical disease not mental ill health.

And I was assured that I should indeed be there, to hold commissioners to account for spending funds targeted at dementia on dementia. Please continue to attend.

So I will…but next time I shall be putting up my hand to stop the acronyms and slow people down, and meet our needs. Because there is no point in working together if we don’t work together.

And if we don’t work together we will get nowhere.

 

Fear, contamination and scrambling

For the first time, the other day, as I drove into my local village after a trip to Shrewsbury (dentist) I felt relieved and at ease.

It was like feeling safe after a threatening or frightening episode. 

I relaxed. Breathed deeply. And felt at home.

And then this morning, walking around Colemere lake and woodland with Lupin, I felt at home again, as if this place that I have known for forty years was mine, my home.

And now, this morning, I am reading a document about the IDEAL research project into the factors involved in loving well with dementia.

The preamble in the study protocol talks about the effects of dementia on well being, life satisfaction, quality of life, and well being. It speaks of loss of confidence, fear of the unfamiliar.

And I wonder, for the first time, whether I am losing that confidence, and beginning to prefer the safety of the known, the comfort of home.

I know I now restrict my driving to avoid long distances, and the days are becoming more frequent when I just don’t like driving more than a few miles. I don’t feel scared, or unable to do it, I just have a reluctance to put in the effort required to concentrate.

And then, if I did not drive how would I get to the dentist in Shrewsbury? Bus? Three miles walk or cycle to catch one! Train? Drive four miles to local station. An all morning journey.

One day that will happen, but not quite yet.

And then yesterday I found myself in a hotel in Coventry (which will remain anonymous), during a two day conference.

I know, you can never be sure from a website, with its professional photos and descriptions, what a place will be like in reality. You book, you hope, you put aside negative memories of others.

But this was something entirely else. A Victorian pile that has gone through iterations as a hospital and then a hotel. Some time ago.

Now it seems to survive on coach loads of touring holiday makers, and probably a few airport customers who need somewhere for a few hours before an early flight.

The faded grandeur, the chipped dirty surfaces, the weary carpets, dented doors, broken basins, dead light switches…

And then the food. Something out of a refrigerated delivery van, ‘cooked’ too long ago, tasteless, mushy, colourless, self service. The vegetarian option sold out before service even started.

Staff could not smile or be polite. We hadn’t booked in advance a time for eating. Tut tut. Tsst.

(We hadn’t been asked to!)

I went to my room. The light switches did not work. The pictures were hung at uneven heights side by side. The sink drain was broken and filthy looking. Everything just horrid.

Walking to breakfast I nearly fell down steps as they had no edge markings, and the floor coverings were mottled, faded, and in places patterned in dazzling shapes. Another guest’s room curtains were different lengths.

This morning I felt horridly unsafe and unsettled. Dirty, contaminated, expecting something bad at any moment. My brain was scrambled. I could not focus on, or gather my thoughts for, the presentation which was first on the schedule.

So I went to a nearby cafe for a good coffee, served in an attractive colourful mug, in clean surroundings, with a smiling barista. And wrote down ideas to speak about.

And I recovered my own smile and balance, and the fog cleared.

I was at the Dementia UK Admiral Nurse Forum. Surrounded by wonderful, smiling, friendly people who change the world for us.

Thank you, Admiral Nurses, for all you do. It’s my great pleasure and honour to work with you.

I hope that when I need your help you will be working where I live, in sunny old Shropshire.

Ethical Dementia: Lies and Deceits

Dementia and ethics 

I need to explore the ethics and morality of aspects of dementia in order to justify my views on some things.

I have opposed the use of pretend bus stops in hospitals, or shops in care homes, that are installed to improve in some way the living experience of people with dementia.

What are the arguments put forward for these?

First, that they provide distraction for a person at a time when, and in a place where, they may be distressed and confused, thereby reducing distress and confusion.

Second, that they facilitate reminiscence, and thereby induce positive memories and feelings, and opportunities for conversation.

Third, for a hospital patient or person living in a care home they provide somewhere for the person to go to when they walk around (aka ‘wander’) which may become familiar or induce pleasant feelings and memories.

What are the arguments against using artificial environments like bus stops and shops?

One, they may cause more confusion, specifically when a member of staff has to explain that the bus stop or shop is not real, and that the person’s perceptions and interpretation are wrong.

Two, in a public environment, a person sitting in an artificial shop or bus stop will be marked out as someone who does not have the cognitive capacity to realise that it is artificial. They will thereby identify themselves as cognitively impaired and may be treated differently by others, without justification.

Three, it is intrinsically wrong to deceive a person in this way, whatever the reason.

Let’s examine these in more detail.

And let’s ask whether there is evidence to support any of the arguments. Evidence might be subjective, by third party observation or by self-evaluation. Or it might be objective, obtained through using statistically reliable approaches or double blind trials.

Medical professionals and NICE require clinical evidence of effectiveness before adopting or recommending a treatment. This is to avoid wasting money on treatments that do not work for a sufficient proportion of patients, and avoid causing unwanted side effects. We should also choose approaches to dementia which are proven to be effective for the majority of patients, or selected patients, in certain specified circumstances.

One of my concerns about these discussions of what works to improve quality of life, and/or reduce distress, anxiety or confusion, for people living with dementia, is that discussions are not based on objective, measured evidence. It’s not acceptable to rely on anecdotal evidence in order to provide treatments or environments or approaches for patients, as you cannot know whether you will do harm rather than good, or whether the approach is effective at all.

And many approaches are devised, promoted and defended by people who do not have dementia. They may have reasons that are not ethically defensible, or are simply subjective and related directly to their own feelings, imagination and life experience.

Distraction may reduce distress

This is a plausible argument, and any distraction might reduce distress. Drawing someone’s attention away from something they are seeing or hearing or smelling or thinking…can be useful if there are no adverse consequences. And if it works.

But what is causing the person’s distress? 

In a hospital it may be:

Not knowing where they are

Not recognising people near them, speaking to them or touching them

Not knowing why they are where they are

Not knowing why they are being moved

Not knowing why a machine is being moved towards them, or equipment used on them

Hearing unfamiliar noises

Being in pain

How do people respond to distress or fear when they have impaired cognition, or dementia?

They might:

Cry or shout out

Hit out at someone

Swear and curse and use abusive language

Try to walk or run away

What are the accepted, acceptable and proven approaches to reducing distress in people living with dementia?

Smile

Touch gently (hands and arms)

Speak calmly

Listen and validate

Distract with personal biographical details or other things like offering food or drinks.

Which of these approaches can make the situation worse?

I would suggest none, other than distraction if done wrongly.

What could make distress worse in a hospital?

Making confusion about location worse

Adding further layers of perception that require processing

Adding noise or aggressive sounds and voices

Restricting a person’s movement

Ongoing or increased pain

…..

Distraction can be achieved by surroundings, or by seeing a person, by hearing sounds, or feeling the touch of a person. And there can be no intrinsic objection to these.

What then does an artificial, pretend bus stop add? 

More opportunity for confusion? Of course.

Opportunity for the person with dementia to be identified and mocked for believing the bus stop is real.

A location to walk to which staff try to prevent you reaching because they do not want you to walk unaided.

It may also provide some colour and interesting objects, which those with normal cognition will recognise and chuckle about or talk about. But a person with advanced dementia will be unable to process the fact that it is fake.

An example quoted on twitter recently is where a nurse had to lie to a patient that the last bus had already left and they would come back the next day to catch the bus.

What is the effect of telling a patient that what they believe is real is not? And that there will be no bus today? Or that one will come tomorrow, up the ward? And that they should either sit there or return to their bay.

Further confusion, surely. If smiling and speaking gently to a patient reduces their distress, well do just that. Without the added factor of a bus stop that is not a bus stop.

….

The issue of distraction becomes morally difficult when distraction is through a lie or deception. 

Is it morally acceptable to tell a lie to distract someone from their thoughts?

Does the end justify the means?

Do we have clinical, reliable evidence that demonstrates that a particular distraction works to reduce distress? Or to reduce confusion?

That one patient is observed to respond positively when sitting in a fake bus stop when spoken to in a validating way does not constitute the evidence that we need about bus stops in general for all confused patients.

Evidence to support using an approach would require validity, such as from a double blind trial, or at least a significant number of observations with accompanying relevant information.

What about the causes of distress and confusion?

Should we not eradicate or reduce the causes of distress and confusion?

The Kings Fund Environmental Guidelines for dementia friendly hospitals goes a long way towards achieving this. The changes cannot be all be done over night or even in a single year, but over five years or so a huge amount could be done. Orientation clocks in view, friendly warm colours, appropriate lighting and noise levels, the right signage in the right place.

Pain is a huge cause of behaviour change. Pain identification in patients with dementia requires all nursing and medical staff to be familiar with proven approaches. This requires training and regular updating.

All staff need to be trained and regularly updated in how to approach patients who have dementia. Smile. Get on their level. Look at them, and make sure they look at you when you speak. Take time, give time. Gentle touching or stroking of hands or lower arms. Explain what is about to happen every time before you do it. Wait till they are ready.

Don’t move the beds of patients with dementia around the hospital or ward unless clinically essential. And never move them at night or late in the day.

Provide finger foods and lots of drinks in easy to hold mugs, placed close to the patient’s hands.

All this we know. Yet all this does not happen.  Not 10% of it. Not 10% of the time.

In medical care it is ethically or morally wrong not to provide the proven and evaluated approaches that we know work? By not doing these things we are causing harm to patients. Does a pretend bus stop absolve us of these omissions? No.

What if the person’s imagined and remembered children don’t come to the bus stop when expected, say at 4.00? What confusion and anxiety could that cause? 

If you set up a false situation in the first place, you are creating opportunities when you have to lie again to get out of them. 

Again, distraction without lies is positive and works. We shouldn’t be using lies.

……

What about the ethics behind lying and deceiving?

In what circumstances might it be right to deceive a person?

In what circumstances might it be right to lie to someone?

Moral absolutism would have it that there is absolute right and wrong, based in our culture on Christian religion. So there are ultimate truths and rights. The ten commandments? At least, do not kill. Do not steal. Do not covet. Do not deceive or lie.

So an absolutist answer would be: never deceive or lie.

A moral relativist would have it that right and wrong is determined by what the majority, or the culture, of people in a group believe is right or wrong, and that these rules of right and wrong change over time. They might therefore justify lying if that is the accepted norm in the group or community. Which it is not.

Moral in-between-ism would say that there are a few absolute rules of right and wrong, and other rules which a group or culture might collectively agree to abide by, and which may change over time and between cultural groups.

Where on this continuum do deception and lies sit?

Pose some real questions…

Person A has terminal cancer. Should a doctor tell him or keep it secret?

Person B’s wife is known by his friend to be having an affair, unknown to B. Should the friend tell him?

Person C is bankrupt but asks your friend for a loan of £1000, without telling him. Should you tell your friend?

Person D is blind, and in a meeting people are making rude faces at him. Should you tell him?

Person E has advanced dementia. Hearing a bell ring she believes it is Sunday and time to get dressed for Church. She is agitated and afraid she will be late. Should you tell her it is Friday and there’s no church?

….

What are the circumstances when it is deemed acceptable, or right, to do wrong to an individual?

19th century philosophers, utilitarians, believed in the greatest good for the greatest number. JS Mill, Jeremy Bentham and others, based their philosophy, their social and economic models, on this theory. They believed that a few getting undesirable treatment could be justified by the majority getting a better outcome. Thus, perhaps, lock away trouble makers and lunatics and lepers so the rest of us can get on with our cosy, happier lives and prosper.

These days many people believe that the end may justify the means, and that doing what might be deemed wrong can sometimes be justified by the desired outcome in others.

Was this not the justification for the Iraq invasion? Or the holocaust? Or electroshock treatment and the pharmacological cosh for schizophrenia? 

War is always wrong, except to right a bigger wrong?

Deception is always wrong, except to address a bigger wrong?

When my mother in law died a few months before her husband, who had advanced dementia and a ten second short term memory, what were we to say when he asked where she was?

She died Chris…and every time he wept and mourned for a few minutes. Then forgot.

Day after day, hour after hour, till we realised that it was better to say she was in the garden, or at her knitting group. ‘Let’s have a cup of tea and wait for her.’

So we lied and deceived because he could not remember an upsetting fact, and it was kinder to help him not think about it.

….

So where does that bring us?

What are the rights and wrongs of creating fake places? Or deceiving people living with dementia who cannot process facts and surroundings?

It is morally wrong to lie. It is also therefore morally wrong to deceive.

It is morally right to reduce suffering if it is possible.

It may be morally justifiable to do wrong in order to reduce another wrong.

Is suffering wrong? 

Is suffering only wrong when it is caused by an act that is deliberate and optional?

Is suffering still wrong when it is unavoidable, or simply the result of being alive and a sentient being?

Ethics, I read, does not generally try to provide a solution or an answer. It clarifies questions and it may provide a framework that enables a person to work out their own decision.

Medical ethics insist that doctors must do no harm. Better not to act than to act and risk doing harm. Hence the necessity of clinical, proven evidence for treatments.

….

I believe we need to look at the cause of the suffering if we are to decide whether an act that seeks to reduce the suffering, but may be morally wrong, is justified. If you can alter, reduce or eliminate the cause of suffering then that is the right thing to do, rather than allow the cause to continue and act to reduce the effects of the cause.

In our case, fake bus stops, shops, railway carriages, etc, what are they designed or intended to achieve?

In a care home – remember, a person’s actual home – a fake railway carriage seems to be intended to be an amusing, enjoyable place to relax, to sit and chat, and to reminisce. To stimulate pleasant memories and feelings.

A fake shop may be just the same. An artifice intended to stimulate conversations about the past.

Do the people ‘using’ these fake places know they are fake? Or are they at a stage where they cannot differentiate, and where any slight inkling of memory is what is wanted? Any contact with their past which lights a bulb inside?

If people know they are in a fake place, like a cafe designed and decorated as a railway carriage, what is there to be concerned about? It is their cafe. And if it has other benefits like reminiscence that is good. 

If they are being lied to and deceived, as in a bus stop with timetables and a sign in a hospital corridor, when they are in a state of confusion and anxiety, surely suffering, this I believe is wrong.

The causes of their suffering are likely to be: 

illness and pain, 

finding themselves in unfamiliar surroundings without any of their ‘grounding’ or orientating landmarks, 

being done to by strangers who cause them pain and appear to threaten them with procedures.

What we should do is eliminate or modify the causes of suffering where we can, not attempt to alleviate the suffering by doing further wrong through deception.

Fake bus stops seem to be an attempt to distract people who are unable to interpret their surroundings or situations so that they no longer think about them negatively or with fear.

They may be colourful. They may be fun…for those who know they are fun!

But they do not address the cause of the suffering.

And they are morally wrong because they deceive when there is no greater good to be achieved through deception which cannot be achieved by other, morally right means.

What should be done to reduce confusion, distress and anxiety – suffering – in people with advanced dementia in hospitals? And in care homes?

Train all staff so they know how to – and do – use positive approaches to behaviours of people who are distressed.

Train all staff so they understand dementia and its effects upon people, and how to approach patients, explain what they are about to do, and provide comfort.

Train all medical, AHP and nursing staff to recognise pain.

Don’t move the beds of patients with dementia except if clinically essential, and then only between 10 and 4.

Change the physical environment so that it is colourful, warm, orientating, comfortable.

Reduce noise. Increase lighting during the day; reduce it at night.

Provide places for patients who are mobile to relax, meet, chat, have drinks and eat.

This is all doable. And will reduce disorientation, confusion and anxiety, ie suffering.

….

I know a few people are taking issue with me over this bus stop issue. I hope this piece has explained my reasoning.

Ask people living with dementia while they are in early to middle stages how to resolve these issues. Ask what they want. Ask what matters to them. Co-produce solutions.

These artificial constructs which aim to distract through deception are the constructs of people without dementia, people who have for years, decades, decided they know what’s good for us, and who believe they have the moral high ground because they are professionals.

Well professionals should rely on reliable, clinical evidence.

And those who are not professionals should probably not be telling us what’s good for us.

Read “to kill a mockingbird”. Walk in a person’s shoes if you want to know them. Better still, just talk to them, ask them…ask us.

But I also come back to my fundamental point: don’t treat us like infants. We are adults, whether or not our brains are functioning as they should. It is demeaning and insulting to be treated like a child who is given a pretend hospital to play in. 

Just because we might smile in that tent does not mean we are infants. 

It just means you have used our inability to comprehend to distract us from our reality…confusion, anxiety and suffering.

If you want to do something worthwhile and that will give us enjoyment, make it real! Create a drop in cafe area. An open lounge or space where we and others can relax. Listen to music. Walk to and from. Sit. Recover.

Address the causes. They may cost time and money, but it’s the right thing to do, ethically and medically.

……..

For those interested, and by way of acknowledgement, I read, and have referred above, to the BBC online guide: “Ethics: an introduction”.

http://www.bbc.co.uk/ethics/introduction/intro_1.shtml

Words matter, but who uses them matters more

Language

What does language do? It reflects and expresses the thoughts you have.

Your choice of words or expressions reflects your cultural attitudes, your political, cultural and moral beliefs.

You cannot hide these as they are the backbone of who you are. You can try, you can train yourself, you can learn new language. You can train yourself to stop before you say something which may be tasteless or insensitive, or just unacceptable.  But to do that you have to be consciously aware all the time.

As you grow up you learn and absorb what you hear and see around you. Especially from those who have emotional relationships with you. Mum and dad.

And then from what you hear others say in your community, or on tv! Or what you read in the newspapers. 

These attitudes and learned responses cannot be simply forgotten and unlearned. 

So in the 50s and 60s (and later) my parents referred to people being demented as an insult or a joke. And even now doctors refer to patients with dementia as ‘dementing’. These people use language in a way that expresses their attitudes and their work.

Now if we talk about use of that word sufferer…

What does sufferer convey? Quite simply that a person is suffering. And what is suffering? 

Pain, either physical, mental, emotional or psychological.

Unpleasant feeling or sensation.

But ‘suffer from’ is also used to denote that a person has a disease, not that they are in pain. Hence, suffer from Parkinsons disease, or cancer, or dementia. That is, linguistically, incorrect use of the word, but it is accepted use.

But when you hear a person described as suffering from a disease you assume that it is painful in some way, physically, emotionally, mentally or psychologically. When it may not be. And after all, people experience pain in very different ways. And at different levels.

Which reminds me of that stupid doctor thing…tell me what level your pain is on a scale from one to ten. And how it compares with yesterday. Better or worse? Yeah, try that when you have cognitive impairment?

Come back to that word ’demented’. It really is a Victorian adjective to describe a person with mental ill health. Or old. Or both. And to denote that the person is not normal, and should be hidden away, locked away.

That’s what they did. In asylums.

What you didn’t see you didn’t know about or think about.

In these present more enlightened times, we differentiate between diseases because we understand a lot more about them. Depression. Dementia. Psychosis. Schizophrenia. 

Ah. But not dementia. Of course. Because dementia is a physical disease, not a mental disease. It is a physical disease in brain cells, in the tissue which transmits signals and stores memory. 

So a person has the disease that results in dementia, not dementia itself, as this does not exist as a disease. It describes symptoms.

And that person may or may not experience physical, mental, emotional or psychological pain as a result of the disease. The pain might be caused by the knowledge of having brain disease, or by the effects on day to day living, or of losing memories and words and sensations. 

Why, then, should we be concerned about use of the word sufferer for a person living with dementia? Or suffering from dementia?

I think because it communicates the wider assumption that the underlying brain disease is destructive of a person’s life, that the pain it causes destroy the capacity to just go on living.

So if you lose a finger in an accident, are you a sufferer for the rest of your life? There may be one or two things you cannot do, or have to do differently, but is this pain? Does this cause your life to be painful? No. It might be irritating, but you get on with living.

And so, if you live with dementia you have to get on with living. It is irritating when you have to learn ways around little difficulties. It is upsetting when you cannot recall words, or faces, or names…or when you feel lost for a few minutes. But is this really pain? And suffering?

So can we agree. If you feel you are suffering that is a personal interpretation of how you feel. It is a judgement no one else can make of or for you.

And thus we should avoid using the term suffer or sufferer or suffering with or from dementia, because you cannot possibly know how I feel. My pain is my own. If your perception of dementia is of pain that is your own perception and no one else’s. And if you do not live with dementia, your perception is based solely on what you have learned from others, from media, the press, radio, tv, and nattering down the pub or in the supermarket.

Please, health professionals, stop using the term ‘suffering from’ in relation to any disease. That is your attribution, not the patient’s lived experience. It is a convention. It is historic language based on the medic treating diseases and suffering. It is a guess that the patient is in pain. And it is an invitation to the patient to feel pain. Suffering from cancer. Suffering from depression. Suffering from Parkinson’s. No. Living with cancer, depression or Parkinson’s. Or dementia.

If you describe living with dementia as suffering you are inviting people to trust your professional knowledge and believe that dementia is indeed painful.  You create a condescending image of a person whose life is painful, suffering, dreadful, just because they have the disease. You encourage a person with the diagnosis to believe they are suffering.

Why does all this matter?

First, there is no cure, so a perception of suffering and pain is hugely worse when there is no possible end other than death.

Second, the five steps to wellbeing – keep learning, stay engaged, keep active, give, be mindful – rely on being positive about life. 

When a person receives a diagnosis of dementia they see a black void of suffering, of misery, and of death, which lasts for months for many. Why? Because of the wholly negative associations with dementia.

Of course it is unpleasant. Of course it sucks. Of course it is a shock.

But you’ve got to be positive, and that starts with professionals. Tell us to go on living, go on doing what we enjoy, go on being active. Don’t change anything. A diagnosis is just one day in the whole journey, and by that time you are well on the way. Your brain disease hasn’t just started that day. You’ve probably had it for twenty years or more.

Professionals must emphasise the positive, the normal, the ‘get on with living’. The smiles, the cheerfulness, the upbeat voices…these matter. Otherwise it’s like a visit to an undertaker to have a preview of your death.

My GP told me for two years that there was no point in getting a diagnosis because there was no cure. (He also said there was no treatment…wrongly, as two years later I got Donepezil. Thank you.) but there is a point in knowing. Getting on with life. Understanding your symptoms. Knowing why. Making preparations. But if it’s all negative perhaps we shouldn’t know.

Of course it is not all negative as long as we see the positives and get Tv house support when we need it.

For Pete’s sake stop telling us to avoid risks, to do less, to avoid fatigue. You’ve got no solution for us so just support us, to get on with our lives as best we can and enjoy ourselves.

 

Have you caused chaos yet? Get a motability driverless car.

What do we all live in fear of?

In the last two weeks two of my friends have had their driving license revoked by the DVLA. 

One seems to be because she completed the form incorrectly – not just that she was too honest, but she actually forgot to complete a couple of questions. The other person I’m not sure about, but I am sure he’s not happy.

What is this with driving? The good old public seem to think that if you are diagnosed you cannot be able to drive safely. And some doctors do too.

But it really does not follow.

Think on. I got diagnosed early in my disease. I could then and do now drive safely.

Someone else might be diagnosed late, well after they were unsafe driving and should have stopped.

Others (33%) will not be diagnosed at all. But still drive on. Probably why they avoid diagnosis.

What does losing your licence mean to you?

Losing your self control and autonomy.

Losing independence.

Losing social engagement because you are stuck at home. Especially in the countryside.

Losing a skill and capability which you’ve had probably since we were 17. 

I remember when I passed my driving test at 17 it was a powerful rite of passage. I hadn’t even left school and yet I was allowed to drive my parents’ car. Fantastic. I went back to school feeling so grown-up.

So when we get dementia and it begins to affect our ability to drive it is again a huge rite of passage. But a pretty awful one.

If, like me, you live in a rural area, you depend upon the car, whether it’s driven by you or someone else. The nearest bus for me is a 3 mile walk and it’s every hour if you’re lucky, if they stop at all. If I had to, for example, get to a hospital appointment in Shrewsbury without a car that would be best part of the day taken up.

And the last time I tried to get a taxi to the station in the morning, there was none available. They were all booked for daily school runs.

That’s just the transactional business of day-to-day life.

But there’s also the need to live independently. To take my dog for a walk wherever and whenever I choose. To go and visit the sea for a day. To visit my son a few miles down the road. And to just get away from home for that matter.

I know there are some circumstances where people with dementia refuse to acknowledge, accept and understand that they have a disease and continue to drive beyond when they’re safe. We all know people who do that. But almost everybody I know knows when they’re safe and when they’re not. They know when, for example, to stop driving at night. They know when to stop driving long distances.

I know one guy who a few months ago had his license revoked by the DVLA on the request of his doctor. He went into a GP appointment and dropped a piece of paper he had taken in with him, and when he got up to leave the GP asked if it was his piece of paper. He said no. The GP immediately decided he was incapable of driving.

 

 

Is that really something that should stop you driving? 

If the GP understood and knew the whole person in front of him, and had a proper conversation, then a that wouldn’t have happened. In this case it was a locum GP who had never met this guy before. 

Appalling. 

As it happens three months later he applied for and passed a driving test to get his license back. The assessor said he was fine and he got to drive home on his own.

So what are the things that we might have difficulties with?

Judging distances. This is a classic which people often refer to. One person forgot to slow down for roundabouts because he didn’t realise he was so close, and knew it was time to stop (driving and the car).

Some people talk about difficulties in finding their way and getting lost. This, I think, is one of the questions on the DVLA relicensing set of documents that I complete every year. (Page after page of repetition, head scratching, calendar searching…)

I ask you, who has not got lost? Who has never got lost when driving, especially in a place they don’t know?

As with all these types of formal procedures and screenings, if you actually answer every question absolutely truthfully you will fail. So of course you say: no, I do not get lost. I never get confused. 

Another possible effect of dementia is to reduce your ability to concentrate so you look around a bit more than you might otherwise do. You know what I mean, driving along, you see something interesting, maybe a buzzard floating along above you, or a harvesting combine.  And your attention wonders. Perhaps a little too far. Again, I ask, does this not happen to everybody? Or is it my imagination? Is it just me that does this?

We need to recognise that people have their ways of coping. So if I’m driving in a place I don’t know, perhaps abroad or a place I have not been for a long time, I turn off the radio. If I have anybody in the car with me, I ask them to be quiet or alternatively rely on them to tell me where to go. Although, my God, that usually causes chaos.

If you have satnav, use it.

I read only this morning that there are people who come to rely on the satnav (or Alexa?) for friendship, and grow to love the lady who talks to them. She’s so kind and gentle. So much better than your spouse! She never tells you off in a nasty way.

“Find the next opportunity to turn around.”

“Recalculating”...because of your stupidity and inability to follow my simple directions!

I think it is sometimes daunting trying to read roadsigns where there are multiple directions that you can take. And I except that dementia can slow your processes down sufficiently to make it difficult to make the right choices quickly enough. But in my experience, people like me learn to drive more slowly than they used to, to allow time to make choices. And if I’m unsure I’ll find somewhere to pull over. So I can check where I should be going.

But there are other things that are making driving more difficult for everyone. Road layouts are becoming more complex as traffic calming measures are introduced. Huge roundabouts are springing up with multiple traffic light systems, multiple lanes and lines, and even raised lane dividers. It is becoming quite difficult in some places to be able to navigate these roundabouts, where sometimes you have to change the lane when you’re actually going round the roundabout in order to stay to end up in the right lane to come off the roundabout again.

A5-London Road roundabout, Shrewsbury, folks. Watch out. Road planners take a bow.

There is another roundabout in Shrewsbury with five exits, where I took my children to learn to drive. We went round and round and round. 

And again, who has never got into the wrong lane at an unfamiliar roundabout, and then caused chaos getting out again? It’s not dementia. It’s being human.

So, what I’m trying to say is, let’s not just make the usual stereotypical assumptions that somebody who gets a diagnosis of dementia all of a sudden cannot drive. Luckily many people don’t make that assumption, but there are many who do. 

Frankly, I would like to see a driving re-test at 65, and every five years thereafter, because I reckon there’s a heck of a lot of people who don’t have a diagnosis of dementia but who actually do not drive safely. 

Equally, we tend to drive a lot slower when we get older, realising that there is no great hurry to get to the other end. We learn at last that speed does not equal size of ego…or anything else. 

I suppose, when it comes to it, driverless cars would be our blessing. Get your diagnosis of dementia, and get a motability driverless car. Fantastic. 

Alternatively, the government could it could make it a lot easier and more financially worthwhile getting access to some benefits to allow you to hire taxis. Because where I live that’s all there is to rely on if you haven’t got a car or someone to drive for you.

The language of dementia

Language describes feelings, facts or events. Without words we can neither think, nor converse, share feelings and events, or be sure what another person is saying. 

Without sufficient words/vocabulary we cannot differentiate or understand subtleties. 

The average reading age in the UK is 9. The likelihood is that at this reading age a person is unable to understand complexities in what they read or hear, and unlikely to be able to express complexities when they speak. And you can only think what you have words for.

So there are many people who do not think complexities, and who rarely challenge intellectually. They challenge emotionally. If they feel something is right they believe it, if not, they dismiss it. Look at the Brexit arguments!

Sorry of this seems patronising, but it is not intended. We do, however, have a huge job making people aware of the realities of dementia, and debunking the myths and stereotypes that paucity of language or intent perpetuates.

But there are writers and speakers with very high reading ages, and vocabularies of hundreds of thousand words, who still use the stereotyping, demeaning language about dementia. Why do they do this, when they may well know better? And if they don’t know better, why don’t they?

If it is deliberate what are they trying to do? Is it because they are appealing to the 50% of the population with a reading age of 9 or below?

Are they patronising these readers, or doing them a service?

A Guardian article is a very different fish from a piece in a tabloid red top paper.

Not just in terms of political view or bias. But in terms of vocabulary, sentence length, and complexity of thought.

You cannot write about dementia as many of us would wish, in an understanding, sensitive and scientifically appropriate way, if you stick to short sentences and two syllable words, supercharged with emotional bias.

But you can make hugely stereotyped statements where there is no invitation to question or doubt; merely to agree with what is stated as fact in unsubtle terms.

And you can control what your readers think, and pander to their own prejudices.

What is really annoying and dispiriting though, is when medical professionals stereotype us. Doctors are very intelligent people, but it sometimes seems that their younger independence of thought and challenge has been trained out of them.

When doctors refer to us as demented, or sufferers, or make no effort to communicate with us, listen and explain; when they treat us as high risks (to their own track record?); when they dismiss earlier stages of the disease as not really dementia at all, because dementia in their experience means you cannot talk, eat, walk, think or speak; this is when we are right to be offended.

They really should know better.

Early stages of cancer are not dismissed as not being cancer.

Angina is still angina, even though you have not had a heart attack.

These doctors should know better. And if they don’t know better they need re-training.

Service user.

What is wrong with that? If we use a service we are a service user. But is that all we are! Just a human being who uses services?

This term is dehumanising. It takes the ‘person’ out of the equation. It denies the feelings and hopes and experiences and skills of the person. 

It allows service providers to only focus on the service they provide, the nuts and bolts. To ignore whether the service is addressing the unmet needs of the person living with dementia, or any other disease or situation. 

Why not just call me George, or a person we help? Even client has a more professional feel to it and implies we had a choice, but it is too impersonal.

Patient? Well now, we may well be patients. If we are receiving medical treatment, yes, we are patients. But the term again allows medical professionals to hide behind an abstract word, in their closely controlled and designed world of medicine. It allows them to ignore the person, the dignity, the emotions, the life history, and just treat disease, if they can.

So please let’s call people people. 

See the person not the disease. Treat the disease if you can, but always provide what the person needs to live well.

Disease and death are completely natural parts of our lives. Of course disease cannot always be cured, and death can never be avoided. So let’s not pretend they can, and that if there is no cure there is nothing to be done. 

We go on living, and loving. Help us do that; don’t write us off.

Do we ‘suffer’ with dementia? Of course, at times. Suffering may be pain, distress, depression, anxiety. So, yes, we may well suffer.

Are we sufferers? Is anyone a sufferer? A person affected by a long term illness? Yes.

But what is the emotional association with sufferer? What does it invite the reader to think?

That this person suffers all the time. That their lives are defined by their suffering. That they cannot lead happy, fulfilling lives. 

We find this word sufferer unacceptable. It reduces us to a poor shrivelled shell of a human being, for whom life is just pain.

This is a lie. Ask any of us.

We did not ask for this disease, we did not go looking for it. But we are not going to let it define us, and reduce us to a shrivelled shell of loneliness and misery. 

We know there is no cure, no stopping dementia. We know there are times when it overpowers us, briefly or perhaps for several days. But we find ways around it. We know that social involvement and activity are keys to feeling good. We know that focussing on what matters to us, and what makes us smile, are the keys to our wellbeing.

And we will not be written off. Euthanised in words.

Dementia, the cruel disease.

Hmm. Why cruel? 

Have a stroke and you might in an hour lose the capacity to move one side of your body, or speak.

Get cancer and you will probably go through several cycles of drug therapy, radiation, operations…

Have a heart attack and you will probably be ok again after treatment or operation, and lifestyle changes.

Have depression and you probably never escape it, lifting and descending year after year.

All diseases affect the body and the mind. They all cause suffering, and pain, and debility. 

That is life. And dementia is simply the name given to infinitely variable symptoms caused by disease in your brain.

It is no more or less cruel than any other disease.

Why then is it often described as ‘cruel’?

That is in the eye of the beholder. It is the stereotype that many people carry in their heads and in their attitudes.

Is dementia a death sentence? Well, death will follow, with certainty. But when, no one can know. 

Will the disease progress at an expected, average speed, into the same expected areas of the brain? 

No. Decisively no.

Dementia does not usually kill. But late stages of the disease will cause inactivity and deconditioning, and other diseases such as pneumonia. And one in three people will die with dementia…not usually because of.

But look what I found doing a quick search…This is what creates the sense of despair and fear.

The disease has usually been present in your brain for 20-30 years before you realise something is wrong. It may take a decade for the disease to develop beyond the initial symptoms, which may in any case be relieved by medication. 

Being born is a death sentence! We will die. Dementia does not add to that or change it.

So let’s concentrate on living while we can. Living as well as we can and as we choose. Going on doing things which are fun, and which make life worth living. Don’t tell us not to take risks! You do, so why shouldn’t we?

And so will I

What, actually, does it feel like, this dementia?

A little bit of fog that you have trouble seeing through at times.

Sometimes I hope that I will die before the disease develops too far.

Little daily reminders, like not recognising the familiar lane I am driving along for a few seconds.

Occasional long spaces in conversations, searching for the words, for the decision, for the answer.

Finding it harder to decode what I hear. Unable to identify the words I want to hear from the background noise, or even just to recognise words from sounds.

Forgetting that I needed to buy something, having known when I went into the shop.

Being late for appointments because I underestimate the time it will take to get there.

Or because I don’t take into account the things I have to do before I leave home.

Sometimes this feels annoying, sometimes depressing. But the more I remember the five steps to wellbeing, and what matters to me, the less I care.

I get annoyed about this disease is still largely ignored by health professionals, beyond diagnosis. And that they really do not understand its effects.

But I am now trying to ignore what I cannot control. Not so much blissful ignorance as wilful closing of the curtains.

It hurts to be ignored, to be patronised, to be infantilised.

But when I sit on my mower, or walk through the fields, pick my tomatoes or look around my flowers, I think looking the other way is good. And the only way to feel happy in this crazy world.

I write because it uses my brain. I photograph because it absorbs me in the moment. I walk because I see and hear and smell things that are just natural, just…there.

Think about the oak tree that has been standing for three hundred years. Get that perspective.

Listen to and watch the house Martins that return each year, nest, breed, chatter as they swoop and glide, and then fly off again. Year after year.

I am, as someone else may have said, merely a blink of an eye. Life goes on. And so will I.

What really matters?

So that’s it.

I’ve stopped. Given up the uphill struggle. Given up the unequal struggle.

There’s brexit…what can I do about that? Nothing. So stop worrying and getting angry about it.

Then there’s dementia. What can I do about that? 

I’ve been working – trying to work – with my local health providers and commissioners for ten years. Seeking to inform them, influence them, to change their work providing care for patients in hospitals and in the community, people with long term conditions, people living with dementia. 

Co-production? Involving the people who live with these illnesses? Listening to them? Allowing them to say what they need, and how to provide it?

Nah. They know better. They are, after all, professionals. They are paid to know best what’s good for us. 

And they have the power. They hold the purse strings. They have the law.

They meet when it suits them and in private. In public they give us bland reassurance, the easy commitment to listen and consult. They say what will get us off theirs backs for a while. The patronising, condescending smile.

Till next time.

And we do it over again. And again. And again.

So I am passing the baton to others.

After a few weeks of growing and mowing, prepping for the wedding, recovering afterwards, I have decided to take my own advice. 

What matters to me? What gives me pleasure? What makes me smile and relax, and want to sit down with a book?

Well it’s not sitting in meetings!

For ten years I changed a habit of my lifetime. I started saying yes to every opportunity that came my way. I asked to join groups and committees, to go to conferences, to speak in public.

After my dementia diagnosis I got a new life and many new, very good friends. I joined the circuit.

And I have, I really have, enjoyed doing all that. 

And every time a door looked like it was opening I pushed. Often gently, occasionally forcefully.

And I always thought it might be the time that the door might open. If I didn’t push, the opportunity would be lost. So I tried. 

Again and again and again.

I have been getting tired of travel. Getting up at 5.30 to catch the 6.56 train for a London meeting, and getting back at 8.00 pm. It now takes two days to recover. 

Staying away in hotels. Eating often fairly crappy food. My fault probably, but it just happens, doesn’t it. Not sleeping. Noise.

It’s partly my own fault too. I often end up chairing groups. It’s just what I do. I’m good at it, and like to work to make sure things happen. I don’t want to sit in meetings, go away, and come back three months later to find nothing has moved on.

So I keep my finger on what needs to be done. And that absorbs my time and thought. And I lose sight of…

What matters to me.

Which is why I am stepping back from a lot of stuff. 

I admire and will support all those who do this work. Some of you spend almost all your waking hours travelling, working (unpaid), lobbying, trying to influence change. Please, if you enjoy it, go on doing it.

I have seem some signs of change, of a willingness to listen and to involve us. But God it’s slow.

I was 68 last month, and I have suddenly become aware of time becoming short. I don’t feel ill. I don’t feel tired. I have simply lost the passion that you need to go on hitting brick walls and going back for more. 

I love being outdoors, walking quietly with Lupin, growing flowers and veg, observing and listening. Seeing the minute but constant changes each day along the same lanes and hedges and woods.

I’m going to walk along beaches, collect stones, watch Lupin disappear into the sun haze over the sands.

For months I have been drifting towards this, but I’ve been held back by fear of boredom. And isolation. 

But now I feel at peace with that. 

It’s simply time for others to take over. I’ve had enough. 

No, of course I’m not going to stop everything! And I’ve got a few commitments in my diary for the next year. But I want to stop thinking about bloody dementia every hour of every day.

And just live.

Dementia…a blessing

Dear Cressida Dick Connolly,

I want to thank you for your illuminating article in January, published in the Spectator, a journal that illuminates in a spirit of true enlightenment.

You are of course absolutely spot on. Dementia is a blessing. Dementia induces a state of wellbeing and forgetfulness that allows all past irritations, hurtful memories, and bad relationships, to drift out of mind, such that a person can dwell happily and restfully in the present.

Dementia is caused by disease in the brain, and since there is no cure it is a blessing , as we cannot remember that cancer and most other diseases are indeed curable and ours is not. As you so eloquently write, far worse to have cancer and live in fear of death, than to simply be unaware of having any disease at all. Perhaps you should have demanded a dose of dementia so you forgot your fear of your cancer. Get in touch and I will see what I can do to help.

Some people mistakenly believe that people suffering with dementia…or rather, not suffering, since they are not aware of their disease…have actual thoughts, and feelings, and can recall events from their early lives. How absurd. We know nothing, we recall nothing. We feel nothing.

Some people living (not suffering) in oblivion with dementia do misbehave from time to time, and actually cause trouble. You don’t seem to mention this. You are in the lucky and very common position of only knowing if people who sit contentedly, and ask for nothing. Why on earth would anyone who only knows complete contentment challenge you, or lash out, or shout, or wander around? Unheard of, of course.

Unusually, you only know people who are still living, who have not yet got to a cliff edge to jump off. How fortunate. Even though they seem to all be incontinent. But since they are unaware of their disease they are also unaware of their incontinence, and sit contentedly in their poo and wee, smiling out from their chair. How quaint.

One of dementia’s great gifts is wonderful hallucinations. Not all of us get them, but we can dream…I would so love to see rats and snakes on the table and snarling wolves circling around me. Never mind Turkish women, give me a smelly, infestations of rats. The ‘old boy’ you know is truly missing out.

The brain disease that destroys our functions of course increases sensory pleasure. You express it very articulately…’sensory pleasures can increase’. For example, enjoying food you have always disliked. It is very helpful to lose your senses of smell and taste, and to be unable to hear properly, as it allows you to love everything that comes your way.

Including a spouse you have hated for decades. That, Cressida Dick, is the best thing. What’s not to like? When you just love everyone around you.

It is quite clear that dementia is sent from Heaven to make our declining years happy, contented and full of fabulous dreams. Thank goodness the Spectator has seen this and told us.

Please, those who know us and count us as friends, don’t ever visit us, as we will not know you or value your visit. We’ll just ignore you and dream on in happy oblivion.

PS: What are your views on euthanasia?

Rights, equity and dementia

How long will it be before a CCG is challenged in court under the Equalities Act for discriminating against people living with dementia?

Or the government?

At least ten times more money is spent on research into each of Cancer, heart and lung disease than is spent on researching for a cure for dementia.

There are over 4,500 Macmillan Nurses in the UK providing specialist care for people with cancer.

There are 250 Admiral Nurses in the UK, providing specialist care. For people abd fa,iles affected by dementia.

There are around 2.5 million people living with cancer in the uk.

There are around 850,000 people living with dementia in the uk.

The annual cost of cancer in the uk is estimated at £9.4 billion. £30,000 per person with cancer.

The annual cost of dementia in the uk is estimated at £26 billion. £32,000 per person with dementia.

One third of people living with dementia are never diagnosed.

What would happen if a third if people with cancer were not diagnosed?

One CCG has a diagnosis rate of 60%, another 80%.

One CCG commissions Admiral Nurse services, another doesn’t.

One CCG commissions Dementia Navigators, another does not.

Human rights are not optional. You cannot choose to uphold them. They are rights.

They are universal and cannot be gained or taken away.

The Equalities Act defines nine protected characteristics of people who must not be discriminated against, including disability.

People with a long term physical health or mental health condition fall within the disabled category.

People living with dementia, diagnosed or not, are defined legally as disabled for purposes of the Equalities Act.

People living with dementia therefore have a right to equity of access to treatment, care and support, alongside that provided for people living with cancer, or heart disease, or lung disease.

CCGs are required to carry out an assessment of the equalities impact of what they do. What they commission, and what they decommission. Board reports have to include the equalities impact of what is being discussed. There is usually a report template which contains an equalities impact section.

More often than not these give a bland assurance that there are no equality impact implications.

People who are given a diagnosis of dementia are most often sent away with piles of information leaflets and details of a crisis intervention service.

If they are prescribed a drug they will be seen every six months for review, using a medical review model.

If they are not eligible for medication they will be sent away and not contacted again. They enter a personal black pit and take many months to dig their way out, if they ever do.

People who receive a diagnosis of cancer report that they are swamped with offers of support from many organisations.

There is no cure for dementia, so what is the point of wasting money on people living with dementia?

Dementia is an invisible disease. It can be ignored. Hidden away.

……..

How are we going to change this?

How can we make government adopt and enforce a standard model for supporting all people diagnosed with dementia?

How can we force CCGs to change their spending patterns to support people living with dementia in similar ways to other patients?

At the moment it seems that CCGs have the legal power to spend as they wish, based on evidence of need. So clearly in many places in the UK people living with dementia have no care or living needs, since their CCGs choose not to spend money on them.

It seems to me that we need a test case to go to court under the Equalities Act.

We need to use the law because the evidence is being ignored. A test case challenging a CCG for failing to provide equity of access to care and support for people living with dementia, by comparison with other CCGs, and other diseases, would set a precedent.

Can this be done?

You tell me.