Don’t try and stop people with dementia from doing something just because it isn’t being done ‘properly.’ Don’t take over – give them time to do things in their own way and at their own pace.
People with dementia understand far more than they have ever been given credit for. Take care what is said in their presence and don’t exclude them from conversations or decisions. Exclusion of any kind can produce anger.
Bossiness is just NOT on! It’s very easy to confuse ‘caring’ with ‘controlling’ and nothing winds up any one of us more than the sense that someone else is controlling our lives. And if the person we’re caring for can’t find the words to protest, then resistance or aggressive actions will ensue. So, walk away, try again later or distract with music of the person’s taste.
Ask the question, ‘Who is it a problem for – us or them?’ If it’s us, we should old and ugly enough to let things ride. Does it really matter that he wants to go to bed with his trousers on, eats mashed potato with her fingers, says there are little men in the garden? Don’t scold, argue, contradict or try to make things “normal” again – you’ll only exhaust yourself. Go with the flow, however bizarre it seems.
Preserve the person’s autonomy for as long as possibly by giving them choice (e.g. what clothes to wear – offer a choice of two garments). Celebrate what the person can still do, rather than bemoan what they can’t. Is the bottle half full or half empty?
There’s nearly always a reason for perplexing behaviours – often something/somebody in the environment or events in their past history. Try to spot the cause or the trigger and change it if possible. 84% of people with dementia misinterpret what they see in the environment.
If they can’t enter our world, we must enter theirs and affirm it. Be prepared to time travel backwards into their personal history and enjoy fantastic adventures with them in their ‘real’ world instead. If we have to indulge in a few evasions – such as answering “I need to go home and make the children’s tea.” With “What’s their favourite?” – when was it a sin to make someone happy? Failure to recognise an older family member, or confusing generations may be because the person with dementia is living in their head many years ago.
Look behind the illness and reach out to the frightened person still in there who needs to feel secure, respected and cherished.
Barbara Pointon, MBE, music lecturer and dementia campaigner. cared for her husband, Malcolm with dementia and documented their life together in two television programmes Malcolm and Barbara: A Love Story (1999) and Malcolm and Barbara: Love’s Farewell (2007). She developed dementia herself in 2018 and died in 2020 in a care home following the Butterfly Approach principles.