Maxine says knowing about sensory changes in dementia is hugely important in dealing with it

Hello, it’s Maxine here.

I was just listening to Wayne’s and Allison’s entries about, particularly about sound overload and I was remembering that I knew about some of the sense changes that I might experience after I was diagnosed through Agnes’s lovely book and her research.

I was at Birmingham New Street Station, about a year ago, going down onto one of the platforms on an escalator and suddenly, I was looking at the escalator about to get on it, and it felt like the escalator was just going to drop to the ground as soon as it went over the top.

It was a weird feeling and quite scary and I think if I hadn’t known it might happen, I would have been terrified or thought that I was going completely nuts. But I did know and I was kind of curious because of it and I turned round and got in the lift and got down to the platform easily.

So, knowing about that had made a huge difference at that point and I’m very grateful for knowing.

Then I went to a friends to stay and she had a shiny black floor in her bathroom, and I remembered that this could be an issue but I found myself standing on the doorstep just looking at it and feeling as if it was a black hole, and I was going to fall into it even though I knew, but, because I knew, I could just take a breath and realise that she was hardly likely to have a black hole in her bathroom and so I walked on to the floor and it was OK.

But I think not knowing these things, that would make you feel like something very terrible is happening, that doesn’t need to happen if you know, and I’m amazed that more people aren’t told that these sensory changes can happen with dementia because it would be so helpful. OK.