Have I got dementia?

I am not sure whether it is strange that people don’t ask me this more often or perhaps surprising that they do at all.

I have found over the years that there are, and I am speaking very broadly, three groups of people who seem me in relation to dementia, or, perhaps described in its wider context, cognitive impairment, that is, a condition that results in impaired thought processes.

Before going-on, it is important to highlight that thought processes is much more than memory.

Dementia isn’t just forgetfulness.

It is a complex disease (the cause of which is still obscure) that affects most aspects of an individual’s mind (that is seeing, hearing, feeling, thinking, remembering, reflecting, imagining, laughing, crying, forgetting).

Sure, it is forgetting where you parked the car, it is also forgetting where you are driving, that you can drive or how to drive.

I have never been a fan of standardised questionnaires – you know, either Likert, that is, ‘On a scale of 1 to 10, how often do you forget where you leave your car keys, with 1 being never and 10, always?’ (Not sure why the focus on cars).

Or, the other scale, which anyone who has been a patient in a hospital ward will have overheard, ‘When was World War 2?’ (Although, thankfully, people have stopped asking this, moving on to more apposite questions, ‘What year is it? What month are we in?’

My friend Vicki bought me Richard Osman’s ‘The Thursday Murder Club’ for Christmas, it takes place in a retirement village in England. One of the protagonists, as a safety-net to ensure her memory is working keeps a daily diary that is two-weeks behind, in that, she will write a fact, say a car registration number, memorise it, then test herself two weeks later to see if she can remember. (This is a little like the get-out used by the character played by Julianne Moore in Still Alice, I recall that had something to do with butterflies).

Anyway, sorry for the side-track.

As I said, there are three groups.

The first are those who probably have dementia.

Most often these people will seek help not because they are worried or concerned, but because family members have noticed, tried to pretend everything is OK for 12 months and reached the point they feel, ‘Something must be done.’

This usually entails making an appointment to see me.

The encounter usually runs along the lines of:

Me                   How are you Gladys?

Patient            Oh, fine thank you.

Me                   How do you feel your memory is?

Patient            Not too bad, no better or worse than anyone.

Me                   Have you found yourself doing anything unusual recently, maybe, forgetting where you live or putting the milk in the cupboard instead of the fridge? (Not the best example, I am usually better on the day)

Patient            Oh, no, everything is fine.

Husband         Moving awkwardly in chair, trying to make eye contact with me, worrying that I believe what Gladys is telling me, suspecting I know what I am doing, but not sure.

Daughter        Usually a little more faith in my techniques, but still worried I will take what Gladys says as the truth.

What I was trying to create, in a manner lacking all skill or finesse, was the demonstration that frequently people who have dementia, particularly if the changes have been ongoing for a year or more, reach a state where they lack insight, they forget that they forget, the fog has become so thick they can’t see where they are going or even that they are lost.

Recently I was sitting with a man who over the years has always refused to seek help for his obviously deteriorating memory. He lives alone. He told me he wondered where his dog had gone, Rover.

Patient            “whistle”… Rover, where are you? Oh, he must be upstairs on the bed, that old dog.

Me                   Does he have a dog? I’ve never seen him with a dog.

It later transpired Rover died 20 years ago.

I could write more on the topic of how we reach a diagnosis of dementia or perhaps some of the more subtle or obvious signs and symptoms of dementia, that is not for now; here I will move-on to the other group.

The second group of people are often in their 80’s – they have noticed that their memory is not as good as it used to be, they even experience the odd moment of significant disorientation, forgetting the name of a friend or a place they often visit. Typically, they might know it is 2022, they might know it is January, but the date might elude them.

Little things, small fragments, details of this or that.

They are sometimes concerned that something is wrong, they are aware that there are problems, they realise they are not as sharp as they might have been in the past.

When you do the tests I mentioned above they often don’t score perfectly, but pretty well. Their personality, mood, manner, behaviour is usually just as it has always been, with the element of ageing added-in.

In the Psychiatric textbooks this is sometimes designated as Mild Cognitive Impairment – that is, failings in memory and other cognitive tests that are a little worse than might be expected but not that bad.

The explanation being, everyone’s memory deteriorates with time, I am not as sharp now as I was when I was 20, just as our body’s age, so do our brains and the functions they support.

Wear and tear, a little like aching joints – something we wish we didn’t have but something that shouldn’t get much worse and shouldn’t affect your life on a day to day basis; you can still drive, shop, read, do everything you have always done.

(I know some people will be thinking of the old joke about ‘just a drop of blood’ when we say ‘mild’ and yes, it is probably an example of the medical world diminishing something that is of significant importance to the person, nevertheless, that is the word.)

In reality, the data suggests that most people with Mild Cognitive Impairment (MCI) will remain the same, their memory, mood, personality will not change drastically over time, they will just be a little worse than might be expected on these fronts; approximately 10 per cent of people progress into dementia and, depending on where you live, MCI will mean you are discharged from the memory service or you will receive follow-up.

The third group of patients are what doctors sometimes call the worried well. These are people who are worried that their memory isn’t as good as it might, who are occasionally frustrated by lapses in concentration or focus. These patients often make appointments for themselves, often drive to the surgery and tell you what is wrong, ‘Doctor, I am worried about my memory’ = ‘Doctor, I am worried I have dementia’

These patients in the standard testing often do very well, indeed many have an excellent memory, there is nothing significantly the matter; they might have watched something on TV that has got them thinking or they might have another medical disorder masquerading as memory impairment – underactive thyroid, diabetes, depression, drug side effects can all present with similar symptoms that affect an individual’s thought processes.

It is probably as important to support this last group as any other as the worry that something is wrong can be as bad as having a problem.

It is one of the rare times in my job when I have the pleasure to announce to a patient, ‘You are fine, your memory is perfect, you don’t have dementia!’

I have never asked a patient what it feels like to be told this although I imagine it is nice.

And, there you have it, the three groups, which like all things in medicine are never as clear-cut, which tend to bend and blur into one another with people who have dementia becoming anxious, depressed and who also have an underactive thyroid in the mix.

The upshot?

From my perspective, as I have described, the worry you have dementia can be as bad as having a disease; if you are worried, get checked. If you are worried that your mum or dad has dementia, get them checked, it is better to receive a diagnosis early, if that is going to be the outcome as support, secondary prevention and even drugs called cognitive enhancers can be started to slow progression and maintain wellbeing and independence.

Any questions? Let me know.