Frontotemporal Dementia (FD) is a disease of the brain that effects the frontal and temporal lobes. As the names suggest, these areas of the brain sit behind the forehead and temples.
The disease causes the cells and nerve pathways in this part of the brain to degenerate, which over time causes these areas of the brain to physically shrink. The frontotemporal area of the brain is responsible for personality and behaviour, language (the formulation of language and the comprehension) and emotions.
Here is a useful video from the Alzheimer’s Society on Frontotemporal Dementia.
This type of dementia is not generally common, and unusually it can affect adults from around age 45 (though it can develop earlier in life in some cases). Despite this it is the most common form of dementia in adults under 65 years of age, and around 16,000 people are living with the disease currently in the UK.
Studies have suggested that FD is genetic, to a degree, with around 1 in 3 sufferers having a family history of this particular type of dementia.
Around 15 percent of all dementia is identified as FD. FD is also known by another name, Pick’s disease, named after Arnold Pick (a neurologist and psychiatrist) who first identified the disease in 1892.
FD is caused by an abnormal build-up of protein cells, or Pick’s bodies, in the frontotemporal areas of the brain, though exactly why this occurs is unclear.
As mentioned above, around a third of cases can be attributed to a family history, though the presence of this disease in individuals without a family history is unexplained. Where there is a family history, the presence of the disease can be attributed to a variety of mutations on several genes in a person’s genetic make-up.
FD can be hard to identify as unlike other forms of dementia, FD does not usually cause memory loss. Its symptoms, including problems using and comprehending language, changes in behaviour and changes in emotions, can often be mistaken for other conditions including schizophrenia, OCD and damage following a stroke.
FD can manifest itself in a few ways and sufferers may have a mixture of the symptoms described below. Unlike other types of Dementia, memory-loss is not typically associated with FD, though other symptoms such as confusion may be mistaken for memory loss.
There are 3 main ways it can affect a person:
As well as the above, more general symptoms include:
Over time as the disease progresses the symptoms an individual experiences will become more frequent. They may also develop other symptoms that they did not originally present with. The vast majority of sufferers require 24/7 care in the later-stages of the disease.
As the symptoms of FD vary from person to person, it is difficult to provide a ‘one size fits all’ guide for caring with a loved one with FD. However, the following ideas can help with keeping a person active and happy, which is the most important thing for both the individual and the carers.
You may also find the Frontotemporal Dementia Support Group website helpful.
There are many different types of external support available, and family and friends of those with the disease are encouraged to explore these options. Our website has a wealth of information about ongoing care, the costs of care (including our handy Care Calculator) and your options for care for your loved one.
You can get more information about the different types of dementia below.