How does our brain work?
Can you imagine how it would feel if you went into town to meet your friends and they didn't remember who you were?
Can you imagine spending the day on your favourite beach, but then you couldn't remember the way home?
Can you imagine what it would be like if your brain got confused and sent you the wrong messages so that you couldn't make sense of what is happening around you?
These are some of the things that people with dementia experience.
From the moment we are born, our brains store our memories, skills and emotions; if something goes wrong with our brain - such as getting dementia - all these memories become confused. All the skills that we have learned in our lives and which we take for granted, are gradually lost - even simple things like knowing how to make a cup of tea, how to dress properly and even how to eat.
Everything you have ever learned and experienced is stored in the part of your brain called the hippocampus, which gives us logic and reasoning. It is like a filing cabinet or bookshelf in your head. Every memory you have is accompanied by an emotion.
Do you remember your first day at school? The grown ups probably told you it would be an exciting time, you would meet new friends and wear a school uniform, just like other young people you knew. Try to remember how you really felt about your first day at 'big' school. Was it exciting, or was it a bit frightening and confusing? Were you happy or did you feel worried about meeting new people and being in a strange place that you had never been in before? Were you worried that you wouldn't make friends? Did you feel lonely and a bit isolated? Were you bullied by other children? These feelings are our emotions.
Our emotions are stored in another part of the brain called the amygdala. Imagine this as another filing cabinet or bookshelf inside your head.
Without realising it, your brains store new knowledge and skills as you go through life. You are always learning even though you might not think you are. When people get dementia they 'unlearn' things. Because of what is happening to their brain things become forgotten or mixed up and they can't make sense of the world around them.
Think about some of your memories and how they made you feel. Some might have been funny, others might have been scary. Some might make you laugh so you enjoy remembering them, others might make you cry so you want to forget them. Then imagine that each memory is a book that is stored on the hippocampus bookshelf. You start on the bottom shelf with your earliest memories and as you grow up you add more memories and skills to your bookshelf until you reach the top shelf.
The other bookshelf in your head, the amygdala one, will store every emotion you felt at the time your brain created the memory. Imagine these emotions as a collection of books alongside the memory ones.
Older people have a lot of books on both shelves. When they first get memory loss and confusion through Alzheimer's or another dementia, the books that are stored on the top shelf of their Memory bookcase start to wobble a bit, then they fall off and become lost for ever. These are their latest memories.
You may have noticed that the person with the confusion might not remember what they did five minutes ago but they will remember what happened many years ago, perhaps when they were a child. This is called short-term memory loss and is one of the first signs that their brain is not working properly. As time goes by and their brain gets more confused, more books fall from the Memory shelves, leaving gaps that cannot be filled. Eventually the whole Memory bookshelf will collapse. The memories and skills that were on that bookshelf will disappear and they can never be learned again.
The strange thing is that the other bookshelf, the one that stores emotions, does not change. This is why people with dementia work more on 'feelings' than logic. The logic and reasoning that we use to work things out can't be used any more.
You might like to draw two bookshelves - call one of them 'My Memories' and call the other one 'My Emotions'. Write down some of your memories then write down the emotion that went with the memory, such as happiness, sadness, laughter, tears and so on. Now cross out some of the memories and look at what is left. Imagine how you would feel if you lost those memories for ever. Doing this will help you to see more clearly what happens to the brain when someone gets dementia. This is something you can do with your family or friends.
For example think about all the steps you have to go through to make a simple cup of tea. This is an exercise you might like to do with your parents or friends. You can test them to see if they get it right. First you have to find the kettle, then the tap so you can fill the kettle with water. You need to know how to fill the kettle, is it through the lid or the spout? Do you know how to turn the tap on and off? Switch the kettle on. Know where to look for the tea. Get the cups and saucers or mugs, find the milk and sugar, recognise when the kettle has boiled then either find the teapot to put in the tea leaves or tea bags, or put the teabags straight into the mugs. You need to remember how to remove the teabags and how to put them in the rubbish bin. Then you need to add the milk and sugar.
It sounds simple doesn't it? But remember how difficult it must be for someone who has forgotten how to do that everyday routine. They might not even recognise what a kettle looks like any more. Think how it would feel to go into your bedroom to find it had been redecorated in colours you don't like and somebody had moved all your stuff to a different place and you couldn't find it, perhaps they had even thrown some of it away. You would feel a bit lost, but probably upset and angry too. You would work it out in the end but that is because your brain would be telling you what to do and where to look. The brain doesn't work that way for people who have dementia.
It is really important that you understand why people can't remember things. It isn't because they are being difficult, it is because their brain isn't sending the right messages any more. Don't try to make them remember the things they have forgotten, it will make them upset and they may start to cry or get angry.
Imagine how they must be feeling. Imagine how you would feel if somebody was trying to make you remember things you had forgotten or if they kept telling you that you were doing something wrong. Remember that the person now relies on their feelings and how you make them feel is what matters to them.
A loving touch, sharing their hobbies, showing an interest in what they say even if it doesn't make much sense will make them feel happy and it will make you happy too. Try to be patient because they are not being difficult or confused on purpose. This is their illness and they need your love and support. Don't try to change their world, step into it and join them for a while and you will find it can be quite a happy place. If they are in a sad place because of unhappy memories, give them a hug and tell them you understand. Your gentle words will help them to feel better.