Information for patients and carers
What is Progressive Aphasia?
Progressive aphasia refers to a progressive impairment in language resulting from degeneration of the left side of the brain.
What are the symptoms?
Sufferers find communication increasingly difficult. Speech may be effortful, hesitant and stuttering. Sufferers may have difficulty formulating what they want to say and finding the correct word. Word sounds may be produced incorrectly, or in the wrong order, e.g. “aminal” for “animal”; “par carp” for “car park”. Gradually sufferers speak less and less and eventually may not speak at all. Understanding is often better than speech production, although may be affected to some degree.
Is it possible to get around the communication problem by writing?
Some patients find it easier to write than to speak, so use of a notebook can help. However, for many people the difficulties are equally present in writing as speaking. It is worthwhile to experiment to find out which method of communication your relative is happiest with.
Can communication be improved by non-verbal means?
Some patients are adept at communicating their needs by gesturing and pantomiming actions. It is worthwhile to encourage gestural use in such individuals, because it can both aid communication and help to relieve the frustration that accompanies communication failure. Equally, use of gestures by the carer may assist comprehension. However, it is important to recognise that progressive aphasia is a disorder of communication, and some patients find it as difficult to communicate by non-verbal means as by speech. It is important to experiment to find out for each individual in what way optimal levels of communication can be achieved.
Are there other ways of helping?
Some carers wonder whether they should ‘fill in’ words that patients cannot find. There is no right or wrong. It is important to give patients time, so they do not feel under pressure, since pressure can aggravate the difficulty in speaking. At the same time, if they are struggling to find a word, offering suggestions can be a great help. In conversation it is better to use short, simple sentences rather than long, complicated ones. The patient will also find it easier to understand one person, than follow the discussion of a whole group.
Are there other symptoms apart from the difficulties in communication?
Some patients develop changes in behaviour. They may show reduced interest and motivation, and become more self-centred and inflexible. Such changes are a direct result of brain changes, which make it difficult to see things from another person’s perspective. They are not the result of deliberate awkwardness or wilfulness.
Does the disorder affect memory?
Patients may ‘forget’ telephone messages, the names of people they have seen, or information they have just been told. This difficulty is part of the problem in language: in registering and holding on to linguistic material. Memory for events, such as a recent holiday, often remains good.
Are there physical changes?
Patients typically remain physically well. They may ‘slow up’ a little as the disease progresses.
Are sufferers aware of what is happening to them?
Patients are frequently aware of difficulty speaking, leading to frustration and irritability. They may feel anxious in social situations, especially when meeting new people, and lack confidence in their ability to cope. Often the degree of awareness diminishes as the disease progresses, and with it feelings of frustration and anxiety. In many ways the burden of the illness falls on the carer rather than the patient.
Will the symptoms become worse?
The disease is progressive, so symptoms do worsen over time. However, there is wide variation in the speed of progression. Some people show little decline over the course of a year whereas others change more quickly. Usually, monitoring a person’s progress over a year will give a good guide as to the likely future rate of progression.
At what age are people affected?
The condition most commonly begins in the 50s or 60s, but can occur in both younger and older people.
What is the cause?
The disorder is a degenerative condition of the brain. This means that cells in certain parts of the brain gradually cease to function properly, which is why symptoms develop. The cause of this degeneration is at present not fully understood and is the key question for current research. However we know that it is not caused by external environmental or lifestyle factors, such as diet, occupational exposure or head injury. It can affect people from all walks of life and is not simply the result of ‘over-use’ or ‘under-use’ of the brain.
Is progressive aphasia inherited?
Most cases of progressive aphasia occur ‘out of the blue’, without other family members being affected. However, in a small number of cases, the condition runs in the family and is passed on through the genes. Families with a genetic predisposition are generally already aware of this, as they know of other relatives with similar symptoms. If you have any queries or concerns please let us know. Our colleagues in the Genetics Department are happy to provide individual advice.
Is there any treatment?
Current treatments do not provide a cure for the disease. However there are some drugs that can have a beneficial effect on some of the symptoms of the condition. In some cases, speech and language therapy can help patients to manage their communication difficulties.
Is there research into the condition?
Yes, certainly. The interest in this area of research increases each year. The aim is to understand the mechanisms that underlie this disorder, so that better treatments can be developed. Our department is an active contributor to research in progressive aphasia and other degenerative disorders. If you would like to find out more about the research carried out in our unit, please visit our website or ask when you attend the clinic.