Memories of Mrs. Slocombe & Blind spots in health and care.

Today a patient called me a pussy.

I did not know what to say.

The conversation went something along the lines of,

-Do you know who I am?

-Yes, you’re that man, the first time I saw you I called you something.

-Mum, don’t say that word! Intone her daughters

-What, I can’t remember, I say.

-Well, I said…

-No! shouts her husband

By now point I am laughing.

-Go on, it can’t have been that bad.

-Pussy. I called you a pussy.

-When we first met you, we thought you were Irish. When you said you were from Glasgow, D. called you that word. (Says the husband)

-Pussy. She says again.

-I laughed.

-You laughed then too.

-I don’t remember.

This conversation was my establishing whether my patient D. was confused or to what extent her dementia had deteriorated.

It transpired; her recollection was better than mine.

My memory is frequently patchy. I do not have dementia.

Dementia is more than memory, it represents changes to a person’s mood, behaviour, personality, rationality, and mental processes. What happened five minutes or five days ago is only a fraction of the whole.

-Pussy, I thought, how odd.

Shortly afterwards I visited another patient, we will give her the initial R.

I slipped my shoes off and sat in the warm living room. R was at one end, her daughter between us.

-You can remove your mask, said the daughter.

-I’m not allowed, I replied.

-Mum lip-reads.

-In that case. I kept my distance.

At first I couldn’t remember my reason for visiting R; after a quick leaf through the digital record, aided by R and her daughter, ‘You have come to tell me when I am going to die. I haven’t long left.’

‘I think you will be OK, you look very well,’ I replied, before the story had unravelled.

My patient had been well until a recent admission to hospital where a critical narrowing of one of her heart valves was discovered.

‘You need emergency surgery,’ she has been informed.

The week before she had been independent, driving, cooking, cleaning, and, all that goes with a normal life.

The period of hospitalisation was complicated by an episode of delirium.

‘We are not sure whether we should operate (on your critical heart condition) given the level of confusion, if we do and it goes wrong, you could be worse off,’ the corollary being, ‘You might have a fixed heart but a failing brain.’

The team allowed R’s confusion to settle – recovery from delirium can take weeks or months.

They reassessed.

‘Still too confused,’ they said, ‘No chance of an operation.’

And, my patient was left with a death sentence.

‘Your heart will deteriorate, and you will die,’ she was told.

She was provided a letter that would ‘keep her out of hospital.’

The letter was an advance care plan, the type of document I often complete, with full understanding of the implications. This, I didn’t feel had been done very well. My patient had been guided into an existential limbo and she was terrified.

During the conversation I couldn’t help thinking that R was, despite the numbers associated with her memory scores, very bright, orientated and alert, engaging appropriately with the conversation, keeping-up with the discussion.

All a little odd.

The hospital doctors had subjected R to something called ‘a MoCA’ (Montreal Cognitive Assessment) which, different from the chocolatey coffee is a standardised memory test.

Here is the test. You could google and test yourself if you like.

Many people (me included) don’t like the MoCA as it is quite difficult and often scores people worse than they are. The definitive cognitive assessment if call the Addenbrooke’s Cognitive Exam ‘ACE’ which is much more detailed (it takes longer to complete, hence the frequent reliance on shorter assessments) (Ironic, when the determination of an individual’s cognition, essentially a major component of their personhood can be decided with such flimsy analysis. (We would not accept the same for heart or lung conditions))

Something was odd.

I decided to do my own test.

‘I know the doctors have already checked you, is it OK if I ask you some more memory questions?’ I asked, ‘Sure, she replied.’

My test is the 6-CIT, (Six-item Cognitive Impairment Test) a questionnaire out of 28 points, where the lower the score the better.

R scored 26. This suggests significant confusion.

And yet, she wasn’t confused.

Odd.

It was then I realised, or by the middle of the test, that R’s memory is fine. It is her communication or language skills that are wrong.

She has aphasia. She was labelled with dementia when her disorder is different.

Aphasia is a neurological condition, usually following a brain injury from a stroke or trauma that impairs a person’s ability to either understand (receptive aphasia) or express (expressive aphasia) language. Some people have both. (If you are interested, you can read Sheila Hale’s book, ‘The Man Who Lost his Language‘ written about her husband John).

I am sensitive to aphasia as my mum had this condition.

Visitors to her flat would see pictures on the living room wall of me and my siblings in our graduation outfits with our names stuck on the frames.

Even before my mum’s stroke she would jumble our names, calling me my sister or brother’s names. The stroke made this worse.

Mum would struggle to find the right word (expressive) although mostly she understood what was being said.

This, for mum was a terrible disability as language, conversation and socialising was one of her superpowers. Mum could talk with anyone at any time about anything. She was forever warm and engaging and never stuck for something to say.

It is not uncommon for people experiencing aphasia to be considered stupid or demented by doctors, nurses, and others.

The principle of ‘ask questions first’ and judge later is frequently ignored in the busy-ness of our post-Tory NHS.

Dementia is a distinctive, progressive ‘neurodegenerative’ condition of the brain – Alzheimer’s or vascular dementia, for example.

Aphasia is usually fixed, static, often following a stroke there can be recovery (with the appropriate therapy or support).

It is also not uncommon for people with visual and hearing impairment to receive diagnoses of dementia. ‘I’m not stupid, I am ignoring you’ kind of t-shirt joke, not that this is very funny.

During Covid, many memory assessments were conducted on the phone, often a doctor or nurse talking to an older person who has poor hearing, the diagnosis erroneously reached.

What to do?

A sine qua non of the care of older people and patients is the phrase ‘time and space’ – providing this allows a patient to decompress and relax, it allows the doctor or other clinician capacity to think.

The urgency of the moment often impairs our cognitive abilities.

‘Slow down, you move too fast, better make the moment last,’ says the song, and this is true of most human interactions.

I have arranged some further tests for my patient and contacted the speech therapists.

The cliché ‘with great power comes great responsibility’ is associated with Spiderman. Doctor, nurses, and others in similar positions also have great power to influence another’s life, we often forget the associated responsibility.