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Frontotemporal Dementia

Information for patients and carers

What is Frontotemporal dementia?
Frontotemporal dementia is a disorder of behaviour and intellect that results from impaired function of the front part of the brain. 

What are the symptoms?
1. Personality and behaviour
The main changes are in character and behaviour.  Sufferers may be more irritable, selfish, inconsiderate and obstinate.  They may behave in ways that are socially embarrassing. They may lose interest in hobbies and appear content to sit doing nothing.  Alternatively, they may be restless, spending much time pacing or wandering.  Sometimes sufferers adopt a rigid daily routine, doing things at the same time each day, and may be resistant to change.  They may show a lack of personal hygiene and be unwilling to bathe or change their clothes.  They may develop odd habits. 

2. Eating
Some sufferers show an increase in appetite and eat indiscriminately, whereas others are reluctant to eat or develop food fads.  Often they show a preference for sweet foods.  Sometimes, they keep food in the mouth without swallowing.  This difficulty is not usually mechanical, but is the result of failure of the front part of the brain to initiate the appropriate action.

3. Memory and concentration
Sufferers may appear forgetful.  This is typically because of faulty attention and concentration.  They may not listen fully to what is said, or pay attention to what is happening around them.  Consequently they do not remember efficiently. However, memory is often variable, with people remembering certain things (that interest them) but not others. 

4. Language
Sufferers may gradually speak less and eventually be totally silent.  They may repeat the same thing over and over again, or copy what others say.  They may use the wrong word.

5. Recognition of people and objects
Some (but not all) sufferers develop difficulty in recognising faces and may use objects inappropriately because they no longer remember what they are for.  These recognition problems are not caused by poor eyesight, but because the part of the brain that helps us to recognise and understand what we see is not working properly.

Can the sufferer alter his/her behaviour?
Sometimes sufferers may seem to be behaving in a deliberately awkward or selfish way.  However, they are not being deliberately awkward.  Their behaviour is the result of brain disease and is not under their control.  Their apparent selfishness is because the condition results in loss of mental flexibility: sufferers are no longer able to put themselves in someone else’s shoes and see things from another person’s perspective.

Is the sufferer aware of what his symptoms?
In general sufferers are not aware of changes in themselves.  Even if they notice changes they typically do not show appropriate concern.

Are there any physical changes?
People with FTD are often physically well.  Reduced activity and general slowing may occur, caused not by physical weakness, but by failure of the front part of the brain to generate physical activity.  Weight changes can occur because of changes in food intake and amount of physical exercise. 

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 affects people between 50 and 65, but can occur in both younger and older people.  The greater prevalence in middle age is one factor that distinguishes this from other forms of dementia, such as Alzheimer’s disease, which are more common in the elderly.

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 this condition 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 FTD inherited?
Most cases of FTD occur ‘out of the blue’, with no history of similar problems in other family members. However, in a small number of cases, the condition does run in the family and is passed on through the genes. Families with a genetic predisposition to FTD are generally already aware of this as they know of other relatives who have developed similar symptoms. If you have particular concerns or queries 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 drugs available, which are designed to alleviate symptoms.

Why haven’t I heard of ‘FTD’ before?
In the past the general belief was that dementia sufferers all had the same disease, usually thought to be Alzheimer’s disease. It is only recently that different types of dementia have been recognised. Another problem is that people use different names to refer to the same condition, which can make finding information about the disease very confusing.  A name commonly used is Pick’s disease.

Is there any research into FTD?
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 FTD 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.