‘… the truth, the whole truth and nothing but the truth.’ That’s what I promised to tell when I appeared at the Old Bailey, after witnessing a theft. But is this always appropriate when we are caring for a person with dementia? Even in everyday life it’s not as clear-cut as we might think.
Some would say that in dementia care, you must always be truthful, no matter what. People whose memory does not keep a reliable record of facts can experience deep shock and intense grief when confronted with a stark truth they had been temporarily and blissfully unaware of. So in care facilities where strict truth at all times is policy, the Incident Book and the Medication Trolley are likely to be on standby. Others have a four step protocol: first tell the truth; if that causes distress try other tactics, such as validating their feelings and substituting a need (eg if they call for their deceased husband, perhaps they’re lonely, so try taking them to the communal lounge), if that doesn’t work try distracting them, and if none of these work, you may use a carefully selected lie that fits in with the person’s biography, and in some protocols that has to have been agreed beforehand and included in their care plan. Quite how you’re supposed to avoid conversations becoming impossibly stilted, I’m not sure.
Last year I attended the UK Dementia Congress with a poster on this topic, and after a plenary debate on ‘environmental lies’, (a slightly different issue involving fake bus stops, which must be very confusing for anyone struggling to make sense of their surroundings) the discussion continued around my poster, and later on over dinner. For someone who was brought up to obey the Ten Commandments, I quite surprised myself with the voracity of my argument. I stated with absolute confidence that in dementia care, I do not believe that strict honesty is always the best policy. But let’s unpick this a little. What the Ninth Commandment actually says is ‘Thou shalt not bear false witness against thy neighbour’. Of course I wouldn’t condone that – or anything like it. I suppose what I mean about ‘lying’ to clients is more akin to chatting about the Tooth Fairy to next door’s seven-year-old, or thanking a favourite aunt for ‘the lovely present’ we didn’t actually like. It’s all to do with considering the person’s feelings before you speak, which is simply good manners.
The idea for my poster began as a reflection on a conversation I’d had with my client Arthur*. He had looked out of the window one January day, seen that nothing was growing and said to me ‘It looks awfully dry out there – if it doesn’t rain soon, we’ll have to water the garden.’ It was a strange thing to say when we’d had heavy rain every day for a week and it had only stopped the day before – just long enough for the path to dry out. But with no grass or snowdrops in that part of the garden, it did look rather bleak. There was no point in highlighting his mistake and reminding him that it was still winter – he would have felt stupid. Neither would it help to tell him not to concern himself with the garden as it wasn’t his job. The house he’d left behind had extensive gardens and when I visited he would often indicate the patch of grass near his window and describe with great pride how it extended ‘right down to the lake at the back’. But here there wasn’t even a pond. If I had called out ‘Honestly! Arthur thinks the garden is too dry!’ the staff might have been amused, but I would have embarrassed him in front if everyone. And if I’d said ‘No, you’re wrong – there’s been a flood warning!’ he’d have become very alarmed. He’d lived by the river, where flooding was always a worry. Any of these comments would have been a direct attack on Arthur’s sense of well-being, the most precious commodity of all in dementia.
For all of us, there are four elements which combine to make up the sense that life is worth living. We don’t need to be on cloud nine all the time, but we do need to feel reasonably OK. OK in our own skin (self-esteem), OK with the choices we have (autonomy), OK around other people (social confidence) and OK about the future (hope).
Applying these to our conversation, if I made Arthur feel stupid, I would reduce his self-esteem; telling him off would threaten his sense of autonomy, pointing out his mistake in front of other people would destroy his social confidence, and warning him about flooding would replace his sense of hope with one of impending doom. Arthur’s memory system no longer stored that constant stream of factual information that the rest of us rely on in everyday life, to provide the context for our feelings. Storage of facts was now very patchy and becoming ever more so, although his feelings were being stored as efficiently as ever.
We need to understand where facts may not be the be-all and end-all, especially where the person’s memory is no longer storing facts reliably. Instead, we can learn to communicate on a ‘feelings’ level. We already know how to do it in everyday life, so let’s take this skill, and those simple good manners, with us into our caring roles.
Shirley Pearce – 02/06/2020