Information for patients and carers
What is Frontotemporal dementia?
Frontotemporal dementia (FTD) is a disorder of thinking and behaviour that results from processes which damage the front (frontal) and side (temporal) parts of the brain. It is the fourth most common cause of dementia but the second most common cause in people under 65.
Why haven’t I heard of ‘FTD’ before?
FTD is much less common than other causes of dementia, such as Alzheimer’s disease, which is better known. In the past the general belief was that all people with dementia had the same disease, usually thought to be Alzheimer’s disease. We are now better at recognising the other causes and the different ways they affect people. Another problem is that people use different names to refer to the same condition, which can make finding information about the disease very confusing. Other names commonly used for FTD are behavioural variant FTD (bvFTD) and Pick’s disease.
What are the symptoms?
Personality and behaviour
The most common changes in the way people behave. There is damage to parts of the brain associated with impulse control, understanding the thoughts and emotions of others, and planning and organisation. People with frontotemporal dementia may seem to be more irritable, selfish, inconsiderate or stubborn. They may behave in ways that others find embarrassing. They may lose interest in hobbies and appear content to sit doing little. Alternatively, they may be restless, spending time pacing or wandering. Sometimes people 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. These are all due to the underlying disease.
Eating
Some people with FTD show an increase in appetite and eat a lot of food and very quickly, whereas others are reluctant to eat or develop food fads. People often develop more of a ‘sweet tooth’. Sometimes, people with FTD keep food in their mouth without swallowing it. This is usually the result of a failure of the front part of the brain to start the swallow and not related to mechanical difficulty in swallowing. However, if someone with FTD does have difficulty swallowing or a tendency to choke, it is important to talk to the doctor about it.
Memory and concentration
People with FTD may appear forgetful. They may have difficulty taking in what is said, or paying attention to what is happening around them. As a result they don’t remember it very well. However, memory is often variable, with people remembering certain things (that interest them) but not others.
Language
People with FTD may experience changes in their speech. They may repeat the same thing over and over again, or copy what others say. Sometimes they may use the wrong words for things. Over time people with FTD may speak less and eventually become mostly silent.
Recognition of people and objects
Some (but not all) people develop difficulty in recognising faces and may use objects inappropriately because they don’t recognise what they are for. These recognition problems are not caused by poor eyesight, but are because the part of the brain that helps us to recognise and understand what we see is not working properly.
Can the person alter his/her behaviour?
Their behaviour is the result of brain disease and is not under their control. Sometimes people may seem to be behaving in a deliberately awkward or selfish way. However, they are not being deliberately awkward. Their apparent selfishness is because the condition results in loss of mental flexibility: people with FTD have difficulty putting themselves in someone else’s shoes and seeing things from another person’s perspective.
Is the person aware of his/her symptoms?
In general people with FTD do not have very good awareness of the changes in themselves. Even if they notice changes they typically do not appear particularly concerned by these.
Are there any physical changes?
People with FTD are often physically well. They may do less and become generally slower; this is caused by a failure of the front part of the brain to generate physical activity, their physical strength is usually not affected. Weight changes can occur because of changes in food intake and amount of physical exercise.
A minority of people with FTD also develop symptoms of Motor Neuron Disease. This is because the underlying diseases in the two conditions are sometimes the same. Your doctor will check for these symptoms in clinic, but if you notice any weakness, muscle wasting or difficulty speaking and swallowing, you should discuss this with your doctor.
Will the symptoms become worse?
The disease is progressive, so symptoms do get worse 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?
FTD is a degenerative condition of the brain. This means that cells in certain parts of the brain gradually stop working properly, which is why symptoms develop. There are a few different changes in the brain which can cause this condition, associated with different proteins in the brain. It is very difficult to be sure which underlying disease process a person might be experiencing, but this is the subject of a lot of research. 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?
In most cases, FTD is sporadic, which means it occurs ‘out of the blue’, with no history of similar problems in other family members. However, in some cases, it appears to run in families, suggesting that there may be a genetic component. Generally, the risk of FTD being inherited is low if no other family members are affected and increases if multiple members of the family have the same condition. Your doctor may discuss with you the possibility of genetic testing. If you or your family members have any particular concerns or questions please let us know.
Is there any treatment?
Current treatments do not provide a cure for the disease. However, there are drugs available for other conditions such as anxiety and depression that may help with some FTD symptoms. These drugs may be recommended by your doctor. Treatment options will be discussed with you in clinic.
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.