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People with dementia deserve higher standards of communication. Ocskay Bence/Shutterstock

Sensational headlines about dementia ‘breakthroughs’ are damaging to patients and their families

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 patients and families. It is particularly cruel in dementia and Alzheimer’s disease 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 dementia.

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.

Coconut oil … NOT a cure for dementia.

The misrepresentation is not only about cures. The headline in the Times “Alzheimers 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 newsstands seems impossible to withstand. 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 subeditor 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 front line 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 with whom to check stories. 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.

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