If you, or a friend or relative, have been diagnosed with dementia, you may be feeling anxious or confused. You may not know what dementia is. This factsheet should help answer some of your questions about dementia, including what causes it and how it is diagnosed.
The term 'dementia' describes a set of symptoms which include loss of memory, mood changes, and problems with communication and reasoning. These symptoms occur when the brain is damaged by certain diseases, including Alzheimer's disease and damage caused by a series of small strokes.
Dementia is progressive, which means the symptoms will gradually get worse. How fast dementia progresses will depend on the individual person and what type of dementia they have. Each person is unique and will experience dementia in their own way. It is often the case that the person's family and friends are more concerned about the symptoms than the person may be themselves.
Symptoms of dementia may include the following:
Loss of memory − this particularly affects short-term memory, for example forgetting what happened earlier in the day, not being able to recall conversations, being repetitive or forgetting the way home from the shops. Long-term memory is usually still quite good.
Mood changes − people with dementia may be withdrawn, sad, frightened or angry about what is happening to them.
Communication problems − including problems finding the right words for things, for example describing the function of an item instead of naming it.
In the later stages of dementia, the person affected will have problems carrying out everyday tasks and will become increasingly dependent on other people.
Carers face very different caring challenges at each stage of the illness. Adjusting to the diagnosis and coping with the changes the illness will bring can cause a great deal of stress, but if you are well prepared and know what you may need to provide in the way of care it can help a great deal. Having a good network of family and friends who know how they can help you is also very important.
Why you should look after yourself
Caring for a person with dementia can become a very stressful and exhausting experience, although it must be emphasised that many carers report positive sides to being a carer. Carers say that being able to manage and feeling like they are doing a good job has helped them cope with caring. Understanding the importance of looking after themselves by taking regular breaks, keeping fit, having regular check-ups, accepting help, maintaining their own interests and social lives all help carers to cope with their caring role.
One of the problems often described by carers is that either their GP referred the person with dementia too late for services or they themselves left it too late before asking for help. This can result in a crisis situation where the carers feel they can’t cope even when the services are put in place to help them.
The secret to successful caring is to seek help before a crisis situation occurs. Know your own limits and don’t feel guilty about asking for help, sooner rather than later!
Before a diagnosis is made it is often very difficult for all concerned, as they do not understand what is happening. Family and friends will be puzzled, worried and perhaps rather frustrated with the behaviour of the person with dementia and not know what to do about it. Not knowing what is wrong can be very stressful.
Once a diagnosis is made there can be a period of shock until the carer and the person with dementia come to terms with the diagnosis. Everyone copes in different ways. Try to make sure you talk about the diagnosis with friends, family and your GP. Once you know what is wrong you can then find out as much as possible about the illness. Many carers have said how frustrating it can be at the beginning before they find out who can help them and what information is available.