While we all may be aware of the dementia crisis that is increasingly heading our way, it often takes a celebrity to truly raise the issue and increase our general awareness levels. I am referring to FTD or frontotemporal dementia and Bruce Willis’ recent diagnosis.

Dementia is a syndrome describing a series of symptoms including memory loss, loss of judgement and language, problem-solving and other processing abilities that are severe enough to interfere with daily activities of daily life. Alzheimer’s is the most common cause of dementia. FTD is less well know and the Alzhiemers Society of Canada states:
‘Frontotemporal dementia is an umbrella term for a group of rare disorders that primarily affect the frontal and temporal regions of the brain – the areas generally associated with personality and behaviour.
Researchers estimate that approximately 5-10% of all dementia cases are frontotemporal dementia. However, when symptoms of dementia start before the age of 65 (known as young onset dementia), approximately 20% of cases are frontotemporal dementia.

The most common frontotemporal disorder is behavioural variant frontotemporal dementia (bvFTD). Common symptoms of bvFTD include changes in personality, behaviour and judgement. A person with frontotemporal dementia may also experience language difficulties, known as primary progressive aphasia. Other names often used for frontotemporal dementia include: Semantic dementia, Frontotemporal lobar degeneration, Frontal lobe dementia, Tau disease or taupathy and Pick’s disease and Pick’s complex.

The Association for Frontotemporal Degeneration describes FTD “as a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain that affects behavior, language and movement. Aphasia can be a symptom of it. The association describes frontotemporal degeneration as “an inevitable decline in functioning,” with an average life expectancy of seven to 13 years after the onset of symptoms.”

The Alzheimer’s Society shares:
“Symptoms: Frontotemporal dementia can cause behaviour changes, difficulties with speech and movement, or memory loss.
Since the frontal (near the forehead) and temporal (near the ears) areas of the brain can be affected, early symptoms can be related to behaviour or speech.
In the early stage of frontotemporal dementia, behaviour changes or problems with speech can appear separately. However, as the disease progresses, these symptoms will increasingly overlap.
Unlike in Alzheimer’s disease, people with frontotemporal dementia often remain conscious of time (for example, what year it is) and memory is not of concern in the early stages.
In the later stages, general symptoms of dementia arise, including confusion and forgetfulness. Motor skills are lost and swallowing difficulties occur.

When experiencing symptoms of frontotemporal dementia, people can display:
• Withdrawn or disinhibited behaviour (e.g. losing the ability to restrain your actions), loss of interest in personal hygiene, tendency to become easily distracted, or to repeat the same activities continuously, overeating, or an unusual desire to put foreign objects in the mouth, incontinence, or inability to wait to go to the toilet.
Other possible behavioral changes can include:
• Inappropriate social actions (making rude comments or seeming tactless),becoming easily distracted, drastic changes in food preference, blunted emotions, decrease in energy and motivation, changes in personality (for example, quieter people becoming more extroverted).
Changes to speech can include:
• Speaking less, total loss of speech, difficulty finding the right words or describing yourself, repeating what has
already been said by others, stuttering, difficulty sustaining a train of thought or maintaining a conversation.

Although no single test can diagnose frontotemporal dementia, assessment is important to rule out other problems. For example, frontotemporal dementia is often misdiagnosed as depression because they share similar symptoms.
Doctors typically diagnose frontotemporal dementia by identifying a series of characteristic features, while ruling out other possible causes.

Little is known about the cause of frontotemporal dementia and risk factors have yet to be identified. Most cases are not inherited. However, there is one extremely rare type of frontotemporal dementia which can be passed from generation to generation, known as familial frontotemporal dementia. At present, there is no known cure and no effective way to slow the progression of frontotemporal dementia.

Frontotemporal dementia affects different areas of the brain than Alzheimer’s disease so available dementia medications (which are primarily used to treat Alzheimer’s disease) do not work for the treatment of frontotemporal dementia.”

As family carers living and loving someone with FTD, obtaining support, guidance and counselling is important for both yourself and for the individual. Contact your local Alzheimer Society to find out about more resources.