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.

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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. 

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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.

Euthanasia

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’?

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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.

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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?

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2 thoughts on “The language of dementia

  1. Pingback: In the Blogs – August 2019 – When The Fog Lifts

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