Image source: googleimages.com and arcseven.co.uk
It seems to me, that the media is either being ‘fed’ research a certain way via media releases from researchers, trying to highlight their own research, or they simply choose to misrepresent issues and research presenting them as ’causes’ or ‘cures’ of diseases such as dementia for the purpose of readership and sales.
It is often scurrilous sensationalism, and potentially does a lot of harm to the people living with this or that type of disease. This plea to the media supports my thinking, and also talks about the power of words, and the harm that misinformation and labels can cause to people.
Last week, it was irresponsibly reported that Alzheimer’s Disease is contagious, based on a tiny sample of 8 research participants.
Alzheimer’s Scotland responded with this:
“A study was published today (in Nature) which stated that the protein beta-amyloid was found in the brains of eight people who had been who had previously injected with human growth hormone. It was suggested that these people would have therefore gone on to develop Alzheimer’s disease. The protein was observed in seven of the eight brains examined.
Some of today’s headlines have suggested that people can ‘catch’ Alzheimer’s disease, that it is in some way contagious, or that it can be caught through current medical or surgical procedures. There is no evidence of this. Alzheimer Scotland are deeply disappointed by the sensationalist and irresponsible nature of much of today’s coverage.
While this study is interesting, it is far too small to draw any conclusions.” You can read their full response here…
A friend of mine in the UK, has started this petition; Allow and uphold complaints against misleading front page newspaper headlines on dementia and other conditions, irrespective of the article context which I decided to share here. I do feel it is time we all took a stand and asked for responsible journalism. I know there are many terrific journalists, and having met a couple in the UK recently who were even willing to engage in the respectful dementia language debate, without telling me people with dementia have not right to request respectful language, like everyone else does, has restored my faith a little in them as a whole. Most of the media I have engaged with so far have said we [people with dementia] have no right to be offended by words such as ‘sufferer’, whilst they agree people with disabilities have every right to respectful [to them] langauge.
Now that the issue of aging baby boomers/need for more creative seniors care/plan for national dementia plans globally is catching on, I see a lot of people jumping into the conversation. Some, mercifully, are ending their own isolation and correcting ridiculous cliches about people with dementia.
But some are identifying a new, LARGE business niche for their products; medications, home support services, training etc.
In my own research, I’ve lately been coming across more sites that seem innocent and just want to contribute to the conversation… But when I drill down into ownership and end goals, it’s not so clean. I’m afraid that some are planting “helpful” articles in order to lead people with dementia and their care providers, back to the services they’re selling, or promoting a particular point of view (i.e. Institutional care is the only way to ensure safety, new wonder medication etc.)
Consumers need to be more careful than ever, I’m afraid. It would be nice to think that everyone who is in the online conversation means well and is diligent about what they post, but in my own daily research, it’s not what I’m finding. Even popular “support” sites can contain dubious ads (What is the painful purpose of ads promoting an end to sagging skin when care providers are lucky to get in a shower… and in study after study, speak of feeling inadequate and shamed??). They sometimes post articles such as this one about dementia being contagious a little too quickly, without thought or editorials. And it can sometimes be a real job determining who wrote what, as you dig through the ads, repeat links (“12 Signs of Early Dementia”) and false impression that the owner of the site is sharing his/her own thoughts about dementia.
To garner better support, funding, and a more accurate and respectful conversation about dementia, we’re also going to have to keep a careful eye on who is writing what. There are genuine thought leaders and emerging writers and bloggers who will help us find the way forward. Let’s keep talking about how that conversation can truly benefit people with dementia and those who care for them.
This is one of my blogs discussing the issue of people without dementia, seeing the big money in dementia – https://kateswaffer.com/2014/10/30/there-is-big-money-in-dementia/ – we need to keep this discussion open, and get some transparency happening very soon I feel…
I read that article in the Herald and thought it was a bit odd. Thanks for informative article Kate.
Glad it helped…
Hi Kate
I too was fuming over this article in the daily mirror. There is enough stigma regarding people with Alzheimer’s without people being told by sensational journalism that they now can catch this disease from our blood. Don’t these journalists realise the harm they do by using just a few words from a piece of research.
Exactly! A young friend of mine is thinking of doing some research into the impact of this type of journalism on people like us, the consumers trying to live with a terminal disease!
As a journalist myself, and having written a (hopefully) non-sensationalized version of the study you mention in your post, I can understand your concerns. One of the problems is that when content goes viral, many media outlets simply repurpose what has already been published on the Internet, without checking sources. I saw many versions of that article going directly with the “is Alzheimer’s contagious” angle, which was completely irresponsible. Sadly, in much of my world, it’s all about getting a user to click on a story, and there is less concern with being medically accurate. (My father had Alzheimer’s so I’m hopefully a bit more aware.)
Thanks for being a voice for media accuracy, we need more people to sound off on this issue!
Thanks for your support Joy xx
Thanks for speaking out! For years I have deplored sensationalistic, misleading and just plain false “reporting” in all the media. A movement to expose it for what it is would be wonderful. I’ll join your team. Mary
Thanks Mary… and I have rightly been taken to task by the lovely Dr Ian McDonald, for not being more specific that it is NOT ALL of the media who do this, as per this tweet;
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Of course he’s right. But sadly the sort that does the damage often overwhelms the accurate and truthful. It tends to be more exciting, announcing bogus solutions to problems and cures for diseases in some cases – lots of things that people want to believe. The vaccination scare is one of the worst these days. Efforts to counteract it seem mostly to fail. I think good media get less attention in the first place, and correcting the misleading and “bad” seems virtually impossible. I always feel that I’m on the losing side of this issue.
As consumers, [we] always feel we are on the losing side of this particular topic… and the disrespectful dementia language issue was well, is still a major bane of our life.
Thanks for this post. It has motivated me to post another blog this morning
Excellent work! 🙂