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bvFTD diagnosis and prognosis explained (sensitive)

Prof Nick Fox explains the crucial importance of learning about the patient's history when making a diagnosis of dementia, especially in bvFTD
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Behavioural variant FTD, which is true for FTD, hugely depends upon a good history. So being able to find out, from somebody who knows the person. Is this new? What’s changed? Has it been gradually progressive? How are they not normal? Because if somebody has always been a bit inappropriate, that’s just how they are. But if somebody who previously wouldn’t have dreamt of doing this, it’s out of character, then one recognises that that’s a change. So the history is very important to understand the behaviours. I think perhaps almost more important in behavioural variant FTD than many other dementias, because people can often performed very well on tests, in a testing situation. But actually, key to it is, how have behaviours changed?
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Have they– are they less empathetic? Are they doing things that wouldn’t be appropriate? And has that been a gradually progressive change? And when did it start? Those are really important to start with from the history. So in Hosna’s case, there were subtle changes, which were only really recognised with hindsight. So people could recognise that there was a gradual progression of being less appropriate, being less concerned about others, becoming more fixed, which culminated in being absolutely convinced that she wanted a particular routine, and it had to be done like this.
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Because memory is relatively well spared in bvFTD, the routine screening examinations that a general practitioner would routinely employ don’t tend to pick out the nuances of behavioural variant FTD, which we would typically be looking for in a specialist clinic. On top of that, you have people in mid-life, who look and act physically very well. So there is, to some degree, a facade that people present, which is a barrier to diagnosis, unless you know the person, or know their background, know their family history enough, to recognise where that facade is in place.
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And unless you have long enough time to spend with somebody, to work that through in your own one-to-one time, it can be very difficult in a short consultation, for that to be picked out. Unfortunately, behavioural variant FTD is a disease, at the moment, for which there is no cure. So it’s a progressive degenerative condition, which we can’t make better. The main treatment options that we have at the moment are treatments which will address the symptoms, but certainly not the cause. So we can’t cure people from this disease. We can help to make the symptoms easier.
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We can help to alleviate some of the symptoms by medication, but also by the strategies we employ behaviorally to alleviate and best manage the symptoms. So as problems progress, ultimately, it’s not the direct effect of some of the features in the frontal lobe, that we’ve talked about, that leads to death. But it’s more that people end up getting infections. They get pneumonia because they can’t swallow properly. And time from a diagnosis, or from first symptoms, to death can be very, very variable. The most aggressive are those where you have motor neuron disease as a feature, as well. And the life expectancy can be two or three years with that.
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Some of the other forms of frontotemporal dementia, people may actually live 15 or 20 years from first symptoms, gradually, insidiously progressive. And then more and more functions being lost, until it will be an infection, or something else, that ultimately ends somebody’s life.
Prof Nick Fox explains the crucial importance of learning about the patient’s history at the beginning of the investigation leading to diagnosis. He also addresses what can happen at later stages of the disease, and end of life issues.
Key questions include:
• Is this new?
• What has changed?
• Are they less empathetic?
• Are they doing things that aren’t appropriate?
• Has it been gradually progressive?
• When did it start?
We hear about how it can be very difficult to detect symptoms early on, and how routine examinations don’t tend to pick out the nuances of behavioural variant FTD, which might be investigated in a specialist clinic.
It’s this difficulty that led researchers at UCL to develop innovative ways of detecting changes in social behaviour, which we’ll learn about in the next step.
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The Many Faces of Dementia

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