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.