Dementia in my family

Impact on you

If someone in your family has dementia, you might be impacted even if you don’t live in the same house as the person with dementia. It can be very upsetting and stressful. You may experience confused and mixed feelings and feel overwhelmed at times. This is very normal.

It is very hard to watch someone you love and who loves you go through personality change, lose their independence and not recognise the faces of the people who care the most. It is important to remember that even if the person with dementia becomes angry, cries a lot or does really strange things, they have a brain disease and cannot help what they are doing. It is also important to remember that you have a life to live too, and have every right to feel like it’s all quite unfair. Don’t blame them or yourself for what is happening.

Watch this video of teenagers talking about the impact of dementia on their lives. You can watch the whole thing, or check out different sections below:

There can be lots of different areas of your life that become impacted:

You may not want to have friends over to your house anymore because you are embarrassed by the behaviour of the person with dementia. Your friends may not ‘get’ how hard it is for you and just find these behaviours funny and think it’s no big deal. Sometimes, people feel like friends don’t understand what it’s like and therefore don’t ask how you are going very often. They might think ‘it’s just memory loss, you just have to remind them of things sometimes’ but you know it's so much more than that. This is really common, unfortunately.

Olivia’s grandpa has lived with her and her parents for the last year. He has Alzheimer’s disease. He likes to be with Olivia and follows her around the house. He never seems to do it to anyone else though. He often comes into her room without warning. He’s getting lost around the house now. Sometimes he says embarrassing things or does things that upset her. Suddenly, her life feels really different to her friends’ lives. It’s really starting to wear her down…

Some people like to hang out more with their friend’s families, because they feel like ‘normal’ families. Other times, people can feel really jealous that their family isn’t like other families, or that other people don't have to go through what you do.

Riley’s dad has frontotemporal dementia. This form of dementia affects the way he behaves and he can be socially inappropriate. He also eats heaps more than he used to. This is really tough for Riley and his family to deal with because he can get angry quickly. He’s always been a big part of Riley’s sporting life and is well known around the club. Riley is really starting to find this hard.

If it’s your parent who has younger onset dementia, chances are you don’t have friends who are going through the same thing, because it is rare. You might be left feeling really alone.

One of the best things you can do is to help your friends understand how you are being impacted by a family member having dementia, by telling them what it’s like for you. Not everyone knows a lot about dementia, and lots of people think it’s different to how it really is. In order to feel more supported, it might have to become your job to tell people what it’s like for you and what they can do to be supportive. For example, you might need to tell a friend:

‘On Mondays I might just need to vent for half an hour after a tough weekend with family stress, can you just listen while I rant? You don’t have to try to say anything to make it better, but just knowing someone is listening would be great’.

Most of the time, good friends would love to help, if they knew how! When you ask a friend for support, and tell them what it is you need, they will usually be really happy to help out.

If someone in your family has dementia, you might feel as though attention is diverted to them, even though you might need it to be on you. You might be feeling a bit unnoticed. Lots of young people get asked to take on jobs that you’ve never had to do before, or that other people your age don’t usually have to do. Some people enjoy this opportunity to step in and help out, and other people can resent it. Both of these reactions are normal and totally acceptable.

In families, it’s normal for people to react differently to one another when times are tough. Some people are likely to keep their feelings to themselves, and ‘bottle up’. Others tend to distract themselves and keep busy with other things. Some people talk very openly about how they are feeling and how stressed they are. It can be difficult when people are reacting differently, and it doesn’t feel like everyone is on the same page. You may no longer feel like a normal family. You might feel angry and resentful that people in your family are busier and no longer have as much time for you.

When young people in families have a role in caring for a person with dementia, it can interrupt their own life plans. Many young people face a tension of loyalties between wanting to build their own lives, and feeling tied to a caring role within the family. Some young people find themselves not taking a gap year to travel, even though they would really like to, because they feel responsible for helping out at home. These same people can experience feelings of guilt for thinking about their own further study and career plans. It is completely ok to be developing plans for your own life, but balancing this with the pressures of caring for someone with dementia can be tough. It’s good to be as open as you can with family or friends about how you are feeling, and see if they can help you with your decisions.

If you’re living with a person with dementia and studying, you might find it at times impossible to get anything done at home. People with dementia can have some behaviours that are very distracting, or they might require a lot of hands on care. This makes it difficult to stay focused on study when you need to. Lots of people find that they use school libraries more than they otherwise would, so that they can have a space to study that is away from home.

If you’ve managed to find work, you might find that caring for a person with dementia impacts your availability for shifts or the amount that your head is somewhere else when you’re at work. If you’re not able to work much because you are caring for someone, it might mean you don’t have the money to do what you want to be doing. This too can lead to isolation.

It can be pretty tough when someone in the family has dementia. Every experience with dementia is different, for both the person with the diagnosis, and for their families. Remember that even the strongest feelings you’re having about the situation you’re in are totally normal. Talk to someone you trust about what you’re going through. If you don’t know anybody that you can trust, you can always speak to a professional privately. Our resources page has information on how to get help.

If you’re not into talking in person, but want some help to not feel so alone, check out our ‘Share your story’ section to tell us about how your life has been impacted by dementia, or to read the stories of others.