Musings of a phenomenologist

Science, psychiatry and random musings

It’s just part of getting old isn’t it?

Posted by soveda on October 28, 2008

Memory loss that is, but here is a scary word for you:

DEMENTIA

Are you scared yet? I am and this is why: Stigma

But what is dementia and why are we frightened, why am I talking about this now. Well, there have been a few news stories recently about treatments and I was interested in looking at why they were reported in the way they were.

First some background,  Dementia is common. Very common in fact, the prevalence of dementia rises with age from 1.4% in the 65-69 age group to 23.6% in the over 85s. But what is it? Well here is a useful definition, but to summarise:

Dementia is a progressive disorder with different possible causes leading to a final common pathway. Sufferers experience loss of cognitive function including but not limited to memory, speech and ability to perform tasks.

The most common form of dementia is Alzheimer’s (approx 50%) but it is very difficult to accurately diagnose the type of dementia without microscopic investigation of the brain (not practical when someone is alive!).

So as we get older we are more likely to have problems with our memory and this is likely to be because of Alzheimer’s dementia. But this still has stigma attached, People die of Alzheimers you know… Well they die of heart disease, strokes, chest infections, Measles…

I was going to add Cancer to that list and I think that it has a place there, not that long ago (and still amongst some people) Cancer was a taboo word, you didn’t use it. Doctors used euphamisms or technical terms, Tumour or Neoplasm, but the word has been reclaimed (to an extent) and this is what is needed for dementia.

I’m ranting now and this is because of the reporting, lets look at this now.

This is the most recent example, let me take you by the hand as we look at the style of this report. Lets start with the first titled section: We have the anonymous “A UK alzheimers expert”, who is this expert? How are they an expert? How are we to judge whether what they say is worth listening to if we don’t know their background? Next: “the team say fatty acids can be controlled through diet or drugs” (my bold), this statement is true but the implication is that therefore you can treat alzheimers through diet (or drugs) now this isn’t proposed by the study authors from my reading of the paper.

Now we get to this first subheading and (at last) the article mentions that the study was in mice, transgenic mice that have been engineered to have an “alzheimers like” condition.

And at last at the end (by which time I suspect many people will have stopped reading) you get to the : “it’s early stages and we can’t really apply this to humans yet” disclaimers. We then discover who the expert is : Professor Clive Ballard, and he qualifies his “robust and exciting” comment with  the early stages disclaimer.

Mow, cards on the table, I agree this research is potentially very interesting for those who work in the field and my gripe is not with the researchers, it isn’t with Prof. Ballard and it’s not with the mice.

I ask a simple question, is this responsible reporting? I think that this sort of report sets up false hopes in sufferers and their carers and is ultimately potentially harmful. This was not the only report that made me think of this. here are two other examples from earlier in the year:

Rember: now this is an exciting trial, there is a drug which may, possibly, improve alzheimers symptoms by actually reversing one of the possible causative agents. This is actually very exciting but the way it was portrayed in the media could easily lead people to believe that a treatment would be available (in 2012) rather than the more prosaic unknown result of a Phase 3 trial.

Dimebon: this one wasn’t so well covered and is rather less exciting and yet it too was covered in the breathy “Breakthrough” style that gives false hope.

The information about treatment needs to be out there, the possible improved treatments need to be discussed but there must be a way of doing this without instilling false hope, or am I in LaLa land?

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