What to expect

Most of the illnesses that cause dementia are progressive, which means that the problems they cause become gradually worse. Sadly, there is no way to stop or reverse the damage that these illnesses do to a person's brain.

A person who is living with dementia will change over time. Nobody can say for sure what the changes will be, or when they will happen, because everyone experiences dementia in a different way. In the early stages of dementia, some people have a lot of difficulties with some things but can still do other things well. For example, they may become very forgetful but their personality and sense of humour may be normal. Or it may just be their speech or behaviour that changes initially, while their memory seems to be fine.

These are stories from different young people who know somebody with dementia.

Questions

She doesn't remember anyone apart from my granddad and she calls him dad.

Tanya

We have a six-course meal every night. He can't tell whether he's hungry or not and doesn't remember if he's already eaten.

Kate

She always asks the same questions over and over again.

Sarah

He always buys things at the shops twice.

Tom

He would go through all of the kitchen drawers looking for something and emptying the contents of them on to the counter and my grannie would go around and help him look for whatever he was looking for (which neither of them knew) just so she didn't make him feel uncomfortable.

Imogen

She is always disoriented and confused. She moves lots of objects to random places and sometimes she finds ways to leave the house by herself and manages to go very far.

Jean

She lost her speech, she couldn’t talk to any of us anymore, it was like we could see her trying to say it but she couldn’t get her words out.

Shannon

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.

Sarah

I don’t remember how she was when she was first diagnosed but at the end she was just laid in a bed in a care home, not being able to do anything for herself. She couldn’t eat, and she was just so sleepy. It broke my heart.

Rebecca

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.