Most weeks there are new headlines about dementia or splashes on social media. If you have dementia yourself, or someone in your family is affected, you will probably read every word, searching for good news about a cure or for fresh information about how to stay well for as long as possible.
People with dementia expertise get concerned about the way these news stories are handled. The problem is that they may be misleading. Misinformation is unnecessary and cruel for people who are faced with a serious illness for which there is at present no cure.
The more we know about the brain, the closer we are to finding cures or ways of preventing the known brain diseases that cause dementia. So, research is important in the search for vaccines, or other medication. Some of the new information might only be one tiny step on the path to success. It is important to celebrate every single step of the way forward. But exaggeration or misrepresentation is unforgivable.
Every researcher who works on aspects of brain health and brain disease is determined to get their results published in a scientific journal as soon as possible. It is only through sharing this knowledge about what does and doesn’t work that progress can be made. The problem is that the reports of their research in scientific journals may be misrepresented by news outlets which then give the wrong impression of the results.
How does this happen? There are several answers to that.
Sometimes the front-page headline is misleading because the story simply doesn’t match what the headline says. That may be easy to spot, but only if you read the article right to the end, which might be on an inside page. When I ask journalists about this problem, they complain that although they interview the scientists and refer to their published work, someone else decides what the headline will be. That person who may be the editor is motivated by the need to have something eye-catching for the front page of a newspaper, or something that online will be “click bait.” The flaw doesn’t worry them as much as grabbing attention.
A headline might say, “Grated nutmeg may help defend against dementia…”. “May” is such a tricksy word. It can be used to justify any statement. I could say, “I may be able to run a marathon in a few weeks’ time…” even if everyone who knows me knows that is not going to happen. But they can’t say the statement was untrue. But the person who badly wants a cure will already have been duped into buying up all the stocks of nutmegs because all they see is “help defend against dementia,” and they don’t notice the tempering word may.
The next thing the editor can do is add the phrase, “…scientists say.” The writer is not only saying that nutmeg “may” help, but also distancing themselves by implying, “It wasn’t me that said it…”. This gives two defences. Attributing it to scientists makes it more credible for most of the audience. And if someone challenges the journalist, they can say they were only reporting what someone else said. Still not lying. Even the punctuation on headlines adds to the confusion. If they put scare quotes, for example with a headline that says “Grated nutmeg ‘cures’ dementia” they are signalling that the cure is only alleged, not asserted. It’s another trick and a person might just see what they so much want to see.
If you go back to the source of the headline, how can any of us critically examine the research that lies behind such stories? Even with some scientific training, most of us do not have the deep expertise to assess research without help. But there are five things that everyone can do.
- Look at the sample size. If a person says their husband was cured of dementia taking a special dietary supplement, that’s interesting. But it’s not evidence that the supplement works. It’s a story. For anything to have evidence that it works you need lots of cases, not one anecdote. This is especially true if the person telling you is a celebrity or wants to sell a product.
- Ask who is benefitting. Is there an importer somewhere that would really like all the 900,000 people with dementia in the UK to buy nutmegs now to offload his stock? Sometimes you can see conflict of interest in the person making the claims. It may be subtle.
- Look at who is talking. Of course, we like scientists, and we trust doctors. But it is worth doing a background search which is so easy on Google. Is this person reputable, and what do other experts say about them? Some self-styled experts don’t have the respect of their peers.
- What institution is behind the research? Some universities and research institutions have fantastic international reputations, and you can be sure they have an interest in preventing any fake news being broadcast in their name, damaging their reputation. Other impressive sounding organisations are disguised commercial businesses with no academic authority. They’ll say anything to get attention.
- Get help from someone who understands research. They will look at 1—4 above, but also how the data was collected, and whether the sample size and response rate is sufficient. They will be able to judge the “validity” of the research, which basically is whether the research measures what it says it was meant to measure.
One area to think about is “confounding factors” that must be checked up when forming conclusions about research results. An example might be the link between good sleep and dementia. It is frequently asserted that sleep deprivation might be a causal factor in dementia. But there are certain low paid jobs that deprive people of sleep, such as factory workers who do rotational shifts. Those workers may be lower paid and have poorer diets. Working shifts may make them more at risk of diabetes. Diabetes is also linked with dementia. People working factory shifts may have not completed higher education and there is a link between extra years of study and delaying dementia symptoms. So, if you want to be sure that the precipitating factor is the shift work, and not the education, or the diabetes, you need to screen for those in the research.
In conclusion, we are all at risk of being misled by news headlines that amount to fake news. But you don’t need a PhD to critically evaluate what you are being told about dementia. Learn as much as you can and ask for help if the story seems too good to be true.
Professor June Andrews