What does it feel like to have dementia?

When a person has dementia, they change over time. These changes are nobody's fault, and the person can't stop them from happening.

They happen because the person’s brain is not working like it used to.

Dementia affects people in different ways so these changes are not the same for everyone.

A person with dementia can often feel confused.

This is not a nice feeling to have, and people with dementia can become very sad.

My Grandpa gets cross easily. I go somewhere else when he is shouting as it hurts my ears.

Emily, 6

Some people with dementia become annoyed or upset very easily.

They might not be able to say why.

If they seem angry with you, it can be scary and upsetting.

Remember that it’s not your fault.

It happens because the person’s brain is not well.

People with dementia can still feel nice feelings.

They can feel happy, safe and calm and enjoy doing the things they used to.

Some days they may seem more like themselves and these can be really special.

Some people with dementia may have lots of good days.

Other people might only have them once in a while.


When Nanny got dementia I felt very sad but now I don’t feel as sad especially when Nanny holds my hand when I say goodbye and won’t let go!

Edward, 7


Everyone who has dementia is different. These stories are from different children who know somebody with dementia.

She always asks the same questions over and over again.


She can't lift me up and spin me round but I know she would if she could.


She used to be able to take us out and spend the day making things or cooking but she can't do that now, she doesn't know how to and she gets confused.


He always buys things at the shops twice.


We were worried about her getting lost.


He can't remember anything.


He gets cross easily. We have to do what he wants.


He drinks and then forgets he has already had some, so drinks more.


He forgets what he's looking for and then gets cross with us.


This information was updated in November 2019 and is due for review in November 2021. Please contact us if you would like a version with references.