What I Learned About Dementia Behaviours.

I stopped trying to understand dementia from textbooks and started trying to understand it from the people actually living with it. When mum was diagnosed with dementia, I did what most people do. I read everything I could get my hands on. I spent hours on dementia websites, reading about communication techniques, behaviours, what to expect, and how to respond.

The information was helpful, but if I'm honest, I often found myself thinking,

"OK... but how do I actually do that?"

It sometimes felt like reading a checklist. Don't argue. Redirect. Validate. Distract.

That all sounds straightforward on paper. It's not!

Living with dementia is completely different from reading about it.

So I started looking for something else. I wanted to hear from people who were actually living with dementia. I found blogs, interviews and personal stories from people describing what it felt like from their side. There aren't enough of them, but the ones I found taught me more than I expected.

They helped me stop looking only at what mum was doing and start asking why.

For a long time, I thought some of her behaviours were deliberate. Why was she arguing? Why was she refusing help? Why was she insisting she could still do things that she clearly couldn't? Why is she so stubborn!!

She wasn't trying to make my life difficult. Mum was scared. I saw it every day.

Imagine waking up one day and something just doesn't feel right. You know your brain isn't working the way it used to, but you can't explain why. People keep telling you what to do, taking things away from you, helping you with things you've done perfectly well your entire life.

You know something has changed, but you don't understand what it is.

You walk into your sitting room and don't recognise it - the chair you've sat in for the past ten years - where did that come from? Who does it belong to?

Where's the kitchen? I was sure it was over there.

You open a cupboard and nothing looks familiar, even though everything is exactly where it's always been.

You look around your own home and wonder, "Whose house is this?"

Nothing had changed. But to her, everything had.

That must have been terrifying for her.

Mum would often ask me, "What's wrong with my head?"

It broke my heart every single time.

Even if I explained she had dementia, five minutes later she'd forgotten the conversation. She wasn't trying to be difficult. She genuinely didn't understand what was happening to her.

As time went on, I realised that fear was behind so many of her behaviours.

She wasn't always refusing because she was stubborn.

She wasn't always angry because she was angry.

Sometimes she was simply overwhelmed.

Sometimes she didn't understand what she was looking at.

Sometimes she couldn't work out what to do next.

Sometimes the world just stopped making sense.

I would often think about the life Mum used to have. She'd get up, have a shower, get dressed, make herself a cup of tea, have a biscuit, catch the bus, spend the day volunteering, go to church, help clean up afterwards, come home and potter about in the garden. She never had to think about what came next. She just did it.

Then, little by little, I started noticing something different. She would get up... and stop. She'd just stand there. I'd see it on the cameras, or when we were sitting watching TV together. She'd get up as if she was about to do something, then pause because she didn't know what that something was anymore.

The look on her face was heartbreaking. You could see she was trying so hard to work out what came next, and her brain just wasn't giving her the answer.

Once I started seeing things through that lens, I became more patient. Not perfect—I still got frustrated, but I became better at stepping back and reminding myself that this was so much harder for her than it was for me.

One thing I learned very early on is that dementia isn't just about memory.

It's about the brain slowly losing its ability to make sense of... everything.

That's why someone might stare at a cup sitting right in front of them and not know what to do with it.

It's why depth perception changes.

It's why familiar places suddenly feel unfamiliar.

It's why someone who has walked independently their entire life suddenly refuses to go for a walk with a carer. From their point of view, a stranger is telling them what to do. Why would they trust them?

I had to stop approaching situations from my perspective and start asking myself,

"What might mum be experiencing right now?"

That simple question taught me more about caring for mum than anything I ever read on medical websites.