People with dementia, and
their families, are frequently misled by headlines that imply a cure is
imminent. Overblown reporting of medical progress is not unusual, and it
causes distress to both patients and families. It is particularly cruel
in dementia and Alzheimer's disease precisely because there is no cure.
False hopes raised through mass media are crushed when the patient
discovers that scientists have not found what the headline called
"a new treatment for dementia"
, but only an interesting neurological finding in some middle-aged rats that didn't have the illness.
Misleading headlines are shared on social media and gain the
status of common knowledge. Sometimes they are relatively harmless,
such as the idea that drinking coffee might help. Tales of miracle cures in two named individual cases
from drinking coconut oil support the idea that this oil reverses the
disease, without any reference to the risk of the unproven remedy. Taken
in excess coconut oil will damage the brain's vascular health. The headline "Drug to Cure Alzheimer's" leads a story about a finding in mouse brain anatomy and not behaviour, no way close to a medicine for humans.
The misrepresentation is not only about cures. The headline in the Times
"Alzheimer's could be passed on by humans"
is false, because there is no evidence that it can in the story. It was
over-dramatic and muddled, using a metaphor about "seeds" for
Alzheimer's that is itself frankly misleading.
How it happens
The ceaseless torrent of unreliable medical communication
from researchers to news stands seems impossible to hold back.
Researchers and communication professionals caught in this current feel
as powerless as the deceived public. Even if journalists or editors
sense it is unkind to torment patients, they feel unable to stop, for
reasons beyond their control. News often feeds off itself, with the
journalist's success depending, to an extent, on the "pick up" of a
story. It is more likely that news will be picked up if it looks like a
significant development or is a dramatic story.
Social media requires brief rapid responses to developments, and the time for reflection is stripped out of the system. Search engine optimisation
fails with bland words, and seemingly demands exaggeration. Owners of
media need high impact and that may mean superficiality. Sometimes
simplification itself can hide the truth.
Even if the writer knows something is not a cure, the sub editor can make it a "cure"
in the headline. The scare quotes alert the initiated to the fact that
the word should not be taken at face value. Those unaware of this
editorial sophistry are victims of deliberate misrepresentation, as much
as they would be without the punctuation.
Commentators without expertise are given a voice to support
stories. Sceptical voices are placed at the very end of the piece,
offering scant balance. Articles are read from top to bottom and an
impression is unquestionably established long before the words of
caution are reached in the last line.
But don't blame it all on journalists
Journalists don't invent reports from researchers.
Well-resourced public relations departments have more time to work up a
release about research than a frontline reporter has to analyse it.
Journalists have huge workloads
and specialism is in decline, reducing the reporter's capacity to
critically examine complex issues or develop authoritative contacts to
check stories with. They try to resist being used as tools by higher
education PR staff, but it is a war of attrition.
Universities have an overwhelming need to demonstrate that their
research has impact in order to attract funding. This increasing
requirement has given rise to greater influence for university
communications departments. The professional communicators are under
pressure to claim impact even when the researcher is diffident about the
results. They will harvest "impact" across their campus by any means,
fair or foul, and use sensational language implying things are available
that are not.Subversive social media sites powered by researchers mock the process where their work is used to promote the institution ("Please modify your Twitter user name so it conforms to the Uni's brand strategy"), and presented in ways that they themselves don't recognise ("Dr Brown doesn't recognise her own research in the media coverage of it"). They make fun of those who manage the university's public image, and believe they have no power to stop it.
Even so, they actively contribute to the phenomenon. There are suspicions that even scientists will fall in line under pressure. The compulsion from funders or management to get publicity means that they conform to the pattern of putting their reservations about the research outcome deep in the body of the text, rather than in the abstract – the part of the paper beyond which few people read.
Because dementia impairs cognitive function, those affected
deserve even higher standards of communication than people with other
diseases. What they get is often the opposite.
June Andrews is Professor emeritus at the University of Stirling
This article was originally published on The Conversation. Read the original article.
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