Publication
Facing Dementia
Section One: Your diagnosis
It is very important to have a proper diagnosis. If you have been feeling forgetful or confused but have not been told by a doctor that you have dementia, you should see your doctor as soon as possible. There are many causes of memory problems and confusion, and some of them can be treated. For example, chest or urinary infections, depression and the side-effects of some drugs can all make some people confused. This confusion can usually be reversed.
If your doctor has not given you a clear diagnosis, visit him or her again. Ask to be referred to a specialist for a full assessment.
There is no one test which will tell the doctor whether or not you have dementia. He or she will need to find out from you and perhaps from your family what problems you are having. He or she will do tests to see more clearly what your difficulties are. The doctor will also check whether you have any other condition which causes symptoms that can look like dementia.
You are entitled to an explanation of what each test is for, and to be told what is wrong with you. This diagnosis is confidential. No-one else should be told it without your permission. But if you are willing, it is a good idea for someone close to you to talk to the doctor. Then they will know what is going on and can support you.
Like most people, being told that you have dementia was probably a shock. You may already have felt that something was not quite right. Perhaps you noticed your memory was not as good as it used to be. Perhaps you were not managing to do things as well as you used to. For some people, having a proper diagnosis can come as a kind of relief. One person with dementia said, 'I thought I was going mad?at least now I know I've got an illness'.
You will need time to start getting used to the idea of having dementia. You may want to find out more about what your illness means. Reading this booklet is a good start. You can ask your doctor to explain more about dementia. The doctor may have tried to explain when he or she first told you your diagnosis. Perhaps you were too shocked to take it in. Don't be embarrassed to go back and ask again. Perhaps you could take notes or tape-record what the doctor says to remind yourself later.
You may feel angry or frightened, or not believe it is happening to you. You will probably need to be able to talk about how you feel to someone. Perhaps you can talk to your partner or a close friend or relative. Or you may choose to talk to a professional worker you know. This could be your community psychiatric nurse or social worker or a counsellor, for example. Or you may find it easier to talk things over with someone you don't know, completely confidentially. There is free 24-hour Dementia Helpline (0808 808 3000) which you can call at any time, for information or to talk.
Summary
Get a proper diagnosis from your doctor.
Talk to someone about your feelings.
Ask to see a specialist.