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Dementia

Description and Experience

The Difference Between Knowing Something and Experiencing It Is Still Great

Bertrand Russell drew a distinction between knowledge by description and knowledge by acquaintance. I do not know what modern philosophers think of the validity of this distinction, but there is certainly a psychological plausibility about it.

In my career I have treated a lot of patients with dementia and listened carefully to their carers. The latter described with perfect lucidity the hardships and difficulties of caring for a close relative in severe cognitive decline. Repetitiveness, wandering, paranoia, aggression, incontinence and many other symptoms and signs: I heard about them all and genuinely sympathised with those upon whom they had such an impact, and who often kept their aged relatives at home at the cost of tremendous personal sacrifice. Many of the carers were old themselves. They had looked forward to a retirement of quiet pleasure, of pleasing themselves at last, only to find that they were now busier than ever with an extremely difficult task that could only grow more strenuous with time. And by the time that task was over, they would themselves be too old to do the things they had always envisaged doing. Their autumn would have become winter.

Yet for all my experience of listening to such people and trying to imagine their lives, I was not fully prepared for the impact on my own life when my wife and I (mainly my wife) found ourselves looking after an aged close relative for quite long periods when paid carers were away. I hadn’t appreciated that it could be a full time job for one (my wife) and a half-time job for the other (me), and that practically all other work or activity became either difficult or impossible.

I knew in theory what self-control it would take to listen to a story someone is telling you without letting on that you have heard it a hundred, or a thousand, times before, and to resist the temptation to finish it because it is so tedious to have to listen to it again; but this was different from actually having to do it myself, to avoid confronting the person with her deficit.

Or again, I knew that the carers of patients often received many phone calls a day and that it must be both boring and irritating to do so: but I did not fully appreciate the impact this could have on one’s sleep pattern until we were called twenty-five times a day, often in batches of eight calls in quick succession. It is one thing to know that relatives of impaired elderly relatives often receive a barrage of phone calls, and another entirely to receive them yourself.

I was also perfectly aware of the uselessness of reasoning in many of the situations wrought by dementia, but nevertheless, so strongly is rationality imprinted in our minds that sometimes I could scarcely stop myself from using arguments that I knew my impaired relative was not incapable of understanding, much less retaining. It was not rational to rely on rationality, yet sometimes I tried to do so, despite being more acquainted with the futility of it than the average person in this situation.

So it seems to me that the distinction between knowledge by description and knowledge by acquaintance, or by direct experience, is a valid one. The reading of literature is probably the best way of trying to close the gap, Shakespeare being the greatest closer of the gap than any other writer (or at least any other writer known to me). He seems not only to have described but experienced his myriad characters from the inside, as it were; and because of his incomparable literary gifts, he helps us to do so as well. When we read Macbeth, we seem to understand not only Macbeth’s actions but to know what it is actually to be Macbeth, though we have no intention of becoming him ourselves. When in King Lear the Earl of Gloucester, having had his eyes put out, is led by an old man who says to him ‘Alack, sir, you cannot see your way,’ he replies ‘I have no way, and therefore want no eyes.’ In eight simple words and nine syllables of great rhythmic beauty, Shakespeare not only describes utter despair but makes us feel it ourselves, or at least helps us know what it might be like to feel it. And, at the same time Shakespeare tells us that to have no way, literally or metaphorically, is the greatest of human misfortunes. Together, this is no mean achievement in eight simple words and nine syllables.

Nevertheless, the gap between description and acquaintance is one that can never (in my opinion) be fully closed, which is why a purely scientific or objective understanding of human life will never be achieved.

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