If someone close to you is feeling confused, agitated or forgetful or is behaving in a way that seems unlike themselves, it is important to persuade them to consult their GP as soon as possible. The GP may refer the person to a specialist for help in reaching a diagnosis or in assessing the person's needs.
There are a number of different conditions which give rise to dementia including Alzheimer's disease, multi-infarct dementia and Lewy body disease. They are sometimes referred to as different types of dementia. .
So far there is no medical test for dementia. A diagnosis is made by excluding other conditions that have similar symptoms, by observing the person carefully and by talking to them and to those who know them well.
The most important people who can help the doctor in making a diagnosis are the person's carers, friends or relatives who will be able to give essential insights into the progress of the illness.
Assessments of memory and other mental abilities and scans may also be used. Sometimes the doctor will want to observe changes that take place over a period of time before making a diagnosis.
There are many conditions or situations that can cause confusion and other symptoms similar to those of dementia which the doctor will want to rule out. They include:
A great deal of research is being carried out into the different types of dementia and new information is continually being discovered.
A diagnosis of the type of dementia can at present only be confirmed with certainty through examining the brain at post-mortem, or in very rare instances through a brain biopsy.
However, it may be possible to identify the type of dementia with a reasonable degree of accuracy by looking at the patient's background and medical history, observing changes in their thinking and behaviour, and examining changes in the brain given on a scan.
Identifying the type of dementia is becoming increasingly important as drugs for treating different types of dementia become available. Such drugs, namely Aricept, and Exelon are already available to some people in the early or middle stages of Alzheimer's disease.
The GP is the first person to consult if someone is confused or very forgetful or is behaving in a strange or worrying way. It helps if you can accompany the person to the surgery so that you can tactfully ensure that any information they give is correct.
Home or surgery: You may see the GP in their surgery or they may prefer to make a home visit. If dementia is suspected it is often easier to assess the person and observe their behaviour in their home surroundings. It then becomes clearer just what the problems are.
Background information: You can expect the GP to spend some time talking to the person to try to establish how they are feeling and what changes they may have noticed and when. The GP may also ask questions about their medical history and the medical history of others in the family.
Your observations will also be extremely helpful in enabling the GP to build a fuller picture of the situation. The GP may ask to see you separately or you may ask to see the GP on your own if you wish.
Physical examination and tests: The GP will normally carry out a physical examination and may perform a number of tests such as blood and urine tests to identify other conditions that may be causing confusion.
Mental tests: The GP may ask a series of simple questions designed to test thinking and memory.
Depression: Depression is sometimes difficult to distinguish from early dementia, particularly as people with early dementia often experience depression as well. However, it is important to try and do so as depression often responds well to treatment. If the GP is uncertain they may refer the person to a specialist.
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Ability to cope: The GP will have access to some services such as community nursing. If there is a probable diagnosis of dementia or if the person is having difficulty in managing, the GP should also refer the person and the carer to social services for a full assessment of needs.
Communication: At the end of the assessment the GP should communicate their findings in an appropriate way and discuss what action needs to be taken. They may feel able to make a diagnosis or they may wish to wait a certain length of time to make sure. In some cases they may want to refer the person to a specialist for a fuller assessment.
General health: The GP is responsible for the person's general health. Even minor complaints can cause additional confusion and the person will cope better if they are in good health. Always contact the GP if you have any worries.Referral to a specialist: The GP is the usual person to refer someone to a specialist. You are entitled to ask for a referral to a specialist for a second opinion or for support and access to services that such a referral may give. Press for a referral if you feel it would be helpful and the GP does not suggest it.
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Your GP will refer you to a consultant in a particular specialty. Which specialty may depend on the person's age and their symptoms and what is available in a particular area.
A consultant will have more specialised knowledge and experience of dementia and access to more specialised investigations such as brain scans.
Working as a team
The consultant usually works with a number of fully-qualified doctors at various stages of further training in that particular specialty. Although the person with dementia will not always see the consultant, he or she is responsible for their case and will discuss it with the doctor concerned.
The consultant also usually works in close consultation with other professionals, each of whom will contribute their own knowledge, skills and advice. These professionals may include nurses, psychologists, occupational therapists and social workers. Their skills may be used to help reach a diagnosis, to assess various associated problems or to offer advice and support.
Assessment
Assessment may take place in the person's home, in outpatients, in a day hospital over several weeks or very occasionally as a hospital in-patient.
As with the GP, an assessment is likely to include time spent talking to the person concerned and someone close to them, a physical examination and a number of tests, if these have not already been carried out by the GP.
Questions may be asked to try and find out whether the person is depressed and the person may see a psychologist for a detailed assessment of their memory and other mental processes. Time may also be spent in observing their behaviour and assessing their ability to cope.
The person may be given a scan which can identify conditions such as brain tumour and normal pressure hydrocephalus or to help to determine whether the person has dementia and if so which type. After the assessment the consultant will send a report to the GP.
Diagnosis
The consultant may discuss their findings with you and the person concerned or may refer the person back to the GP for this information. In some cases the consultant may wish to the see the person again after some months to observe any changes before reaching a diagnosis.
The consultant may also offer a range of services.
Neurologist: A neurologist is a doctor specialising in disorders of the brain and nerve pathways. Patients may be referred to a neurologist if it is thought likely that they may have another condition such as a brain tumour or a neurological disease such as Huntington's disease which may be accompanied by dementia. Some neurologists have particular experience in diagnosing all forms of dementia.
Geriatrician: A geriatrician is a doctor who specialises in the physical illnesses and disabilities associated with old age and in the care of older people. If the person has reached retirement age they may be referred to a geriatrician to see whether their symptoms are due to a physical illness or to find out whether they are suffering from a physical illness as well as dementia. They may also be referred because a particular geriatrician is familiar with the problems associated with dementia.
General adult psychiatrist: A general adult psychiatrist is a doctor specialising in diagnosing and treating a wide range of mental health problems. A younger person may be referred to a psychiatrist to assist in the diagnosis.
Old age psychiatrist: An old age psychiatrist, sometimes known as a psychogeriatrician, is a psychiatrist who has further specialised in the mental health problems of older people including dementia. They will have considerable experience in diagnosing dementia in older people and in advising on the problems associated with the condition. They may sometimes also advise on younger people with dementia.
It can be difficult to remember everything you want to say during a consultation. It may be helpful if either you or the person concerned writes down any worrying signs or questions to ask the GP or specialist. You may also want to write down any important points the doctor makes.
If a doctor, or any other professional, uses words or phrases you do not understand, always ask them to explain. It may also help if the doctor writes down any medical terms, particularly if English is not your first language.
Doctors will differ in their views on what to tell patients about a diagnosis of dementia. Some doctors feel that patients who can understand have a right to know, particularly if this gives them the opportunity to put their affairs in order. Others may feel that the knowledge that they have dementia will be too much for the person to cope with. Your views as a carer will be taken into consideration.
Some doctors might use a term such as 'memory problems' if they feel this is more easily understood or more appropriate. Or they may be prepared to give a diagnosis of dementia but only if the patient asks or seems to want to know. Most doctors will inform carers of the diagnosis of dementia or possible dementia. However, if you feel that the doctor is avoiding the issue, you should press them to explain. You have a right to know.
In some cases it may be left to you as a carer to decide whether to tell the person that they have dementia. You will probably be guided by the kind of relationship you have with the person and what you feel they want to know.
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The GP should arrange to see the person with dementia from time to time to assess any changes and discuss any problems. If they do not suggest this ask for an appointment whenever you think it may be helpful.
The GP may refer the person with dementia to a specialist for help in assessing changes and for advice on ways to deal with specific difficulties.
Click here for more information about the ways in which your GP can help.
November 1997
Page Text supplied by The Alzheimer's Disease Society of Great Britain