What is dementia?

Choose a question to find out more about dementia.

What can I do?

The best way you can help someone with dementia is to give him or her some of your time. This can feel difficult. They may have better days and worse days, and you may not know what to expect.

Don’t worry if you don’t know what to say or do. Just being there can help. A person with dementia can often remember things that happened many years ago more easily than things that have just happened. They may forget recent events too quickly to talk about them, but enjoy talking about photographs, memories, music or films from the past. Try asking questions about things they used to do, and listen carefully to the answers. By doing this you can help to make your relative with dementia feel loved and involved.

Some people with dementia find it hard to talk to other people. Their illness has affected the parts of the brain that help them to speak and understand.  It can be hard spending time with a person who can’t speak, but sometimes just being there can help. Small things like holding hands, sharing a hug or sitting together can feel special for everyone.

Some people find it helpful to plan an activity to do together, or a topic to talk about. Visit the What works for us page to read ideas from young people who have a grandparent or parent with dementia. There are more tips here.

Each person with dementia is different, so talk about your ideas with the people who care for your relative or friend. Ask what helps to make your relative or friend feel happy, safe and calm.

What if things go wrong?

If things don’t go to plan, remember that it is not your fault. It can take a while to find things that you can enjoy doing together and these things may change over time. What is wrong one day might be right another day, so don’t be afraid to have a go.

Only do as much as you feel you can. If you begin to feel upset or worried, leave the room. Try again when you are ready.

Some young people live with a relative who has dementia, and may help to care for them. This is a very difficult thing to do. If you are a young carer, visit the links page to find out where you can get information and support.

How can I cope with my feelings?

Living with dementia can be very hard – not just for the person who is ill, but for their family and friends. When somebody in your family has dementia, it can change your life in many different ways. It’s normal to feel many different emotions but some can be very difficult to cope with. Here are some things you can do to help:

  1. Talk about it.

Don’t try to hide your feelings. Talk to someone you trust.

This can be hard, especially if the person you’d like to talk to is dealing with his or her own feelings. You may worry that it might upset them to talk about it, or that they have too much to do. But they would much rather you talked to them than worried.

Some children find it helpful to speak to friends, or other people who are experiencing the same thing. If you can’t think of anyone you can talk to, visit the links page for ideas about where to get help and support.

"Be around people that understand, being able to talk to people about it helps."

  1. Be yourself.

It’s normal to feel happy, to laugh, and to think about the other things that are happening in your life. Don’t feel bad about being yourself. When things don’t go to plan, remember that it’s not your fault. You didn’t do anything wrong.

  1. Ask questions.

If you see, hear, or read something that makes you feel worried, scared, angry or upset, ask someone about it. If they don’t know the answer themselves, they can help you to find somebody who does. It can feel simpler to search for answers on the Internet, but everyone with dementia is different. What is true for one person may not be true for your relative, or your family.

Click on the words below to read about feelings and experiences that other children and young people have shared.