Remember, dementia comes in many forms

As you may have read, the family of actor Bruce Willis – he of Die Hard fame – has recently announced that he has been diagnosed with frontotemporal dementia, commonly shortened to FTD.

I have been asked what this is on several occasions so this month will highlight this lesser-known condition.

First, it is worth recapping some definitions. Dementia is not a diagnosis in of itself, but a syndrome of cognitive loss sufficient to interfere with your day-to-day function. It is an umbrella term and can be due to a large number of conditions (over 100 in fact).

Once you are understood to have dementia, you then need to understand the cause of it. Now, Alzheimer’s disease, which I suspect you have heard of, is by far the most common cause.

The typical early symptom of this condition is an inability to remember new things, due to damage to the hippocampus, a small structure in your temporal lobe. This leads to forgetfulness and all its daily ramifications.

Vascular disease – problems with blood supply – is the second most common cause. This can present with different symptoms, often involving changes in mood and motivation.

Frontotemporal dementia is considerably less common (though does account for up to 10 per cent of cases of young onset dementia – those developing under the age of 65), but I continue to regularly see people with frontotemporal dementia in my clinic.

So, what are the symptoms of FTD? Well, as the name suggests, it affects the frontal and/or the temporal lobes of the brain. Depending on what type of FTD you have, you may have initial symptoms related to either of these lobes not working well. These are then often known as a language variant (type) if the temporal lobe is the problem, or the behavioural variant with frontal lobe problems.

If language is the main problem, you might struggle with either the mechanics of speech leading to stuttering or broken speech; or the meaning of words, leading to clear and fluent speech, but the wrong words being used. This seems to be the main concern with Bruce Willis.

If behavioural changes are prominent, these can be varied but can include apathy, disinhibition (where you say or do things that are not socially appropriate), a loss of empathy (becoming ‘colder’ and emotionally distant) and increased impulsivity (acting on things without thinking about the consequences).

Anxiety and obsessive-compulsive (repetitive) symptoms can also occur.

As time goes on, the distinction between the language and behavioural types becomes more blurred and the symptoms may overlap.

As you can see, these symptoms are quite different to the typical memory problems encountered in dementia due to Alzheimer’s disease. In fact, at least early on, someone with FTD may have a good memory, leading to a disbelief that they could be experiencing dementia.

Treatment is different in some ways to other types of dementia, but unfortunately it is not something that can be cured.

The medications we use for improving cognitive symptoms in Alzheimer’s disease do not work well in FTD, though the psychological and behavioural changes can often be well treated.

As with all types of dementia, the focus should also be on supporting the person with the condition as well as, importantly, those caring for them.

The other message here is that if you are concerned about a change, either in you or a loved one, you should speak with your or their doctor – even if there are no memory problems.

Kailas Roberts is a psychogeriatrician and author of Mind your brain The Essential Australian Guide to Dementia now available at all good bookstores and online. Visit yourbraininmind.com or
uqp.com.au