You may have read a report that was published this month, looking at continence care for people in hospitals and the way that care is sometimes applied for people with dementia. The findings were important and should be given proper attention.

In some hospitals, there was a culture in which people with dementia were, in my view, given no continence care at all; they were left to use pads, regardless of their usual habits and capabilities. I’m unwilling to refer to that practice as continence care; it’s simply continence management and shows, in fact, a total absence of care.

If a person without dementia was asked to adopt that practice, I think the vast majority would find it distressing, demeaning and completely unacceptable – but we’d at least know what the proposed system was and would bear that in mind. If you weren’t able to remember, though, every occasion when assistance was required would be a case of going through the same distress again – and if you weren’t able to verbalise that, it would be absolutely normal to show your distress in some other way. There’s no doubt at all that people placed in that position will have been termed “difficult” or even “aggressive”, simply because they’ve been agitated through lack of continence care and assistance.

To this should, of course, be added that a habit lost during a hospital stay may well not be able to regained once home again, leading to increased care needs and, possibly, a move into residential care; it’s a serious as that.

I remember in the very earliest days of the Butterfly Scheme being implemented in a pilot hospital, a gentleman coming the next day to visit his wife, who lived with dementia. The hospital team approached the gentleman and let him know that his wife had been agitated and, indeed, aggressive – and they hadn’t realised she was incontinent. The gentleman was astonished; he explained that she’d never been aggressive in her life and she certainly wasn’t incontinent. As the chat continued, he explained that when his wife needed the loo, he’d spot that she was waggling her left foot, which was his signal to assist her. The staff then realised that yes, the agitation had begun with the lady waggling her left foot, then she had become more and more agitated when they hadn’t recognised her need. They immediately ensured that the tip was passed on to all staff (via the adopted system), assisted the lady and she was no longer seen as either incontinent or aggressive. 

It’s not rocket science, is it?

Proper assistance for toilet needs should be a priority for all – but the finding that people with dementia are often the first patient group to be left without that care is horrific; they are, in fact, the last group who should be denied that care. A lack of continence care amounts to a massive gap in dementia care – and one which will, I’m sure, result in far more staff time being taken in dealing with the distress of those patients than it would have taken to assist them.

Now there’s a study whose findings would be interesting!