Living with dementia can be very hard – not just for the person who is ill, but for their family and friends.
Lists of facts and symptoms help us to understand dementia, but they can’t describe the way dementia changes a person’s relationships with the people they love. This is one of the most upsetting things about dementia, and is different for every person and every family.
The best way you can help someone with dementia is to give him or her some of your time. This might feel difficult at times. Visit What works for us to read practical advice from young people who have a grandparent or parent with dementia.
When things don’t go to plan, remind yourself that it’s not your fault. If you don’t feel safe, step away or leave the room. Try again when you are ready. It can take a while to find things that you can enjoy doing together and these things may change over time. What seems wrong one day might be right another day, so don’t be afraid to have a go.
It’s normal to feel happy, to laugh and to think about the other things that are happening in your life. Don’t feel guilty about being yourself.
"Be around people that understand, being able to talk to people about it helps."
This can be hard, especially if the person you’d like to talk to is dealing with his or her own emotions. Some people 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 useful links page for ideas about where to get help and support.
"Remember other people in your family will probably be feeling the same way as you. The more you can talk about things as a family the better."
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. You may find answers to some of your questions here, but the best people to ask are the medical professionals who are helping to care for your relative.
"Your family would much rather you asked questions than worried about things. If they don’t know the answer themselves, they can help you to find out."
Some young people live with a relative who has dementia, and may help to care for them. This can be a very difficult thing to do. If you are a young carer, visit the useful links page to find out where you can get information and support.
When somebody in your family has dementia, it can change your life in many different ways. It’s normal to feel many different emotions. Here are some stories from other young people.
These feelings are all normal, but they can be very difficult to cope with
Watching her fade away in front of my eyes made my heart break every time I saw her.
I feel horrid. Heartbroken. She can't treasure moments with me the way I can with her.
I feel sad because she doesn't remember my dad and me anymore
Seeing the hoist and equipment needed by the carers to move her makes me sad. Sometimes I think Nanny has forgotten me and thinks that I'm my Mum (now crying thinking of this).
It makes me feel sad, because they are forgetting the people they love
It's sad when I see my granddad because I remember how he used to be and my grannie has to work so hard to make sure that he is comfortable all the time.
I feel upset and I feel like I'm missing out on my nan
I don’t remember how my nana 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, her airways were closing and she was just so sleepy. It broke my heart.
We were worried about her getting lost. She walked on the motorway.
When my Nanny fell over and cut her face badly, I felt so scared and worried.
I feel horrible
It's fun seeing her- we chat a lot - it's good to see her in those moments when she's herself again.
I've learned to enjoy every small moment...the other day she said my name- it meant so much to me.
I get very frustrated but also feel very sorry for him.
I feel quite annoyed when he gets cross.
It means I have to grow up when I only have a short time of childhood left.
It makes me feel upset and angry to see him not remember me or my mum or my granddad’s wife.
I don’t understand why she tries to hit people sometimes.