What is Frontotemporal Dementia?

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.

How common is 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.

What causes Frontotemporal Dementia?

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.

How can Frontotemporal Dementia affect someone?

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:

  • Behaviour-varying
    • This includes symptoms such as a considerable changes in personality, relationships with family and friends, and general behaviour and conduct.  This is due to the nerve cell loss in parts of the brain that dictate judgement, conduct and empathy.
  • Primary progressive Aphasia
    • Aphasia is the term used to identify issues with language comprehension and use, and it can be split accordingly into two distinct types.  Semantic Aphasia refers to the reduced ability to understand language they are exposed to (written and spoken), and the loss of ability to ‘find’ the right words when speaking or writing.
    • The speech of the individual remains fluent. Progressive non-fluent Aphasia affects the spoken language of an individual, their language becomes disjointed and broken, they may also omit words that ‘join up’ sentences, such as ‘and’, ‘but’ and ‘yet’.
  • Disturbances of motor functions
    • This broad term can be split into 3 distinct types of problems with motor function.
      • The first is Amyotrophic Lateral Sclerosis, this is a type of motor neurone disease which causes muscle wastage, resulting in weakness and can cause some loss of mobility (for more information about ALS visit the motor neurone disease association website here).
      • The second is Corticobasal Syndrome, this causes your limbs to become stiff or uncoordinated.
      • The final type is Progressive Supranuclear Palsy, which causes difficulty walking, muscle stiffness and changes in posture.

As well as the above, more general symptoms include:

  • Changes in food preferences (some sufferers of FD over-eat and over-drink)
  • Problems with general comprehension, for example an individual may struggle to recognise what an object is used for

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.

Caring for someone with Frontotemporal Dementia

frontotemporal dementia caring

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.

  • Encourage them to pick up a hobby, something not too taxing but enjoyable – for example gardening, engaging with a pet, taking short walks – these ideas will help keep a person active and their mind stimulated, without being overwhelming. Allow your loved one to set the pace in any task, and gently encourage them if they need it.
  • Dementia suffers thrive on routine – it helps add order to what can seem like a very chaotic and confusing world.
  • Sufferers who have lost some language abilities may benefit from language or speech therapy
  • Physiotherapy may be a suitable treatment for sufferers who have lost some mobility

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.