What's happening?

If you are a young person who knows someone with dementia, you may be feeling confused, angry, frightened and isolated. You may think that nobody understands how you feel and you have nobody to talk to. The information below may help you, or you can call our Helpline, in complete confidence, on 01534 443075. You don't even need to tell us your name - just talk to us. We really do understand how you feel.

Below is some information about Alzheimer's and other types of dementia which may help.

Firstly, it is important to remember that you cannot 'catch' dementia from somebody. Also it does not run in families except very rarely. If one, or even both of your grandparents have it, this does not mean your parents or you will have it too.

What is dementia?
Dementia is the name used to describe a large group of brain illnesses that cause changes to the way people see the world and how they work things out. They may have memory loss and difficulty communicating with you. They may also have problems with thinking, recognising people and will sometimes forget what things are used for. For a long time the person may look healthy on the outside, but on the inside, their brain is not working properly. In other words, the world does not make sense to them any more.

What is the difference between Alzheimer's Disease and dementia?
Alzheimer's Disease is the most common form of dementia of which there are over 100 types, most of which are very rare.

Is dementia a mental illness?
No, it is a physical condition of the brain. Our brain is our control centre and it controls everything we say, do and think. When the brain is sick we have problems with all our actions, including remembering, speaking, understanding and learning new skills.

Is dementia something all older people get?
No they don't. We have all heard of people who live to be 100 who do not have dementia. We all forget things from time to time especially when we get stressed, even young people forget things. Someone who does not have dementia may forget where they have put the car keys. A person with dementia may forget what the keys are used for. As people get older the chances of developing memory loss and confusion are higher but not all old people will get dementia.

Can younger people get dementia too?
Sometimes people in their 30s, 40s and 50s can get dementia, but this is not very common.

What problems do people with dementia have?
Dementia affects everybody differently. Some things that can happen are:-

• Increasing forgetfulness
• Not able to learn new information or follow directions
• Repeating the same story over and over and asking the same question      many times
• Difficulty finding the right words or completing a sentence
• Jumbling words and phrases so they don't make sense
• Losing or hiding things or blaming others for stealing them
• Confusion about the time of day, where they are or who other people are
• Fear, nervousness, sadness, anger and depression
• Crying a lot
• Forgetting how to do everyday things like cooking a meal, driving a car or    taking a bath

How do doctors know someone has dementia?
There is not just one test. Several tests must be done as well as collecting information from people who know the person well. There are some illnesses that seem similar, but are treatable. If these illnesses are ruled out by the doctor, he or she may be able to say that the person has a particular type of dementia such as Alzheimer's Disease.

How long does it last?
Some people can live up to 20 years after they show signs of dementia, especially if they are physically healthy. But on average, they live from 10 to 14 years with dementia.

What causes dementia?
There is a lot of research happening throughout the world. We now know that dementia causes changes to a person's brain that destroys the brain cells. The death of these cells is responsible for the gradual loss of a person's memories and skills.

Is there a cure?
At the moment there is no cure for dementia. There are some drugs that may help the person to think more clearly, but they do not cure the person.

How will dementia affect me?
If someone in your family has dementia, you and your family may be affected even if you don't live in the same house. It can be very upsetting and stressful. You may experience some confusing feelings and not want to believe this is happening. This is normal. You may feel upset that your relative, whom you love very much, has become like a different person.

If the person with dementia lives with you, it may mean you miss out on some attention or that you may be asked to take on other jobs and responsibilities. You may no longer feel like a normal family. You may feel angry and resentful that people in your family are busier and no longer have as much time for you. Caring for someone with dementia is very stressful and can make people tired and worried. Sometimes it will make them short-tempered and snappy with you. Try to understand what your parents are feeling too.

You may not want to have friends over to your house any more because you are embarrassed by the behaviour of the person with dementia. If you learn more about it you can explain it to your friends.

Are there any things I can do to help people with dementia?
Yes you can help a lot. Safe, simple and quiet activities that involve repetition are best. Many people will remember things from long ago but won't remember what happened a few minutes ago.

• You might look at a family photo album with them and help them to stick in  new pictures

• Help them to make a memory box that you can fill with their favourite  things

• Find out about their life, their job and what they did when they were  young. Help them make a life history book with pictures

• Play music that they might remember and sing along if you know the words

• Take them for a walk to their favourite place, or just go for a walk in the  garden

• Encourage them to enjoy all their favourite activities, even if they can't do  them very well

The person may have trouble understanding if you speak quickly or try to give them too much information. Keep sentences short, don't shout, be patient and try not to argue even if you know they are wrong. Remember that they can no longer work things out the way that you do. Making them laugh will work wonders - people with dementia still have a sense of humour. They are still the same person.

They may not be able to concentrate for very long so change what you are doing if they become anxious or seem to lose interest.

Even if they might not recognise you, don't get upset. Your love and understanding can be a great comfort.

Give them a cuddle, a kiss or stroke their arm. A smile and a gentle touch will mean a lot to them. The best help you can give is letting them know that everything is OK and that you care about them.

What can I do to make life easier?

• Learn all you can about the illness
• Help your friends understand about dementia
• Be calm and patient
• Be loving
• Be involved
• Be understanding
• Treat the person with dignity and respect. Imagine how you might feel if you couldn't make sense of the world around you
• Don't correct what they are saying even if it is wrong or mixed up
• Help around the house

What about my feelings?
Remember that all the feelings you have are normal and OK. It is very hard to watch someone you love, and who loves you, forget people and things and lose their independence. Remember that even if the person becomes angry, upset or does strange things, they have a brain condition and cannot help what they are doing. Don't blame them and don't blame yourself for their behaviour. It is not your fault.

If you feel worried or frightened about what is happening and you want to talk to somebody who is not a member of the family, phone our Helpline on 01534 443075, leave a message and we will call you back to talk things through at a time to suit you. You do not have to give your name.

 

Did you know?

More than 60 per cent of all care home residents, aged over 65, have a form of dementia.