Recently, at the funeral of a dear friend who’d lived with dementia, someone commented that she’d “not really been here for three years”. 

Not here? Really? This was the lady who’d laughed with me, sung songs and joined in accompanying actions with me, pointed out birds in the garden, enthusiastically inspected all jewellery and complimented me on my painted toenails (which I did just to please her), right up to the end!  Granted, she’d no longer been able to follow complicated stories or contribute to conversations in the same way that she used to – but the very essence of her remained and it was always a joy to share that with her. 

The problem, of course, lies not with the person living with dementia, but with the level of insight and skill of those around them. If other people presume there’s no onus on them to adapt and adjust in order to link better with a person with dementia, then they’re unlikely to enjoy that same bond with them. However, given some insight – seeing life from that person’s new perspective – other people can make a world of difference to someone’s life with dementia. Add some skills to that and the whole scenario becomes hugely better for everyone involved.

I never know why so many people presume that healthcare staff will automatically have those insights and skills; if they’ve not been taught, then they’re highly unlikely to know what to do and why. As you’d expect, I believe that healthcare staff absolutely should be taught, but I’d never blame them for their lack of knowledge if the system has failed to support them in that way. If healthcare staff believe that the person “isn’t really there”, we shouldn’t be surprised if they fail to connect with them and the patient becomes anxious and distressed.

Something I’ll never tire of when teaching staff at Butterfly Scheme organisations is the transformation I see taking place before my very eyes. Staff who may well enter the room looking impatient or grumpy, not knowing why they’ve been sent to this training, quickly morph into people who understand and want to help. Once they’ve gained that insight, they can’t turn back; they know beyond any doubt that they need to behave differently, but more than that – they know the difference they can make and  they totally want to achieve that.

If anyone ever says to you that a person with dementia “isn’t really there”, please don’t sit back and let them continue to believe that. If you can teach them even one bit of insight, that’s something they can take with them and use for the rest of their life. Not only will people living with dementia benefit, but the person who can now help to support them will be happier, too.