The media and dementia
The press can in many cases allow us to put our stories across and raise awareness, which can be helpful, as we must try to remove the stigma and bad stories one way or another.
Many of us use the media in one way or another, to explain our stories of life with dementia, and we sometimes use the media in campaigns, raising awareness, writing books, or in magazines, and occassionally by blogging.
In some cases we have a lot of control as to what is written, where in many others, it's all down to the reporter or the editor, who may well be out just to get a hard hitting story.
I have had the benefit of both sides of this coin, and where the good reporter and editor write your story, so that it's what you have said, the bad one will rewrite it to get the bad side or negative side of dementia and sadly we see a lot of this these days.
This to me proves that many simply use us to get a story, where others are genuinely interested in putting out a good positive story about dementia.
I have met many reporters, from newspapers and television, and have been left staggered at times by the way they change a story round to get what they want, whether we find it good or badly put over.
In one or two cases, I had asked to see a copy, before it was printed, so that I could ensure the story was correct. This came after a couple of very bad stories. But reading the copy before it goes to print does not guarantee, that it will go out the way you saw it.
In two cases the story was rewritten by the editor, because they did not agree with my changes. That can be very hurtful and in some cases distressing.
These days some television channels and newspapers have dedicated reporters who know how to deal with people living with a serious illness like dementia, and in many of these cases we end up with a story well worth reading, because it takes in your life and tries to put a good positive message over.
These people normally go through everything prior to the interview, so that you know what the questions will be, and you also know that the answers you gave will not be changed, and this is the mark of a good press reporter.
These days in the media we also see stories, about people who have died, or sadly taken their own lives because they could not cope with the illness, and I often wonder just how much of the story is true and how much is speculation.
One which sticks in my mind is that of Robin Williams. Some reports said he was struggling with Parkinson's Disease, where over the last few days, they are trying to say that he was struggling with hallucinations within, Lewy Body Dementia.
While many of us who have this form of the illness, can understand these problems. We also know that this makes life hard, if not difficult at times, not just for the person with the illness, but also family members
No one knows at present which story is correct, and until the facts are out in the open they should never comment. Now however the press are speculating about this, and in doing so they are causing extra distress to Robins family and close friends.
So this is the negative side of the media.
While it is good to use the media we must ensure that they are high quality, know about dementia, and are prepared to go that extra mile to ensure the story is correct.
Using the media can be very helpful in raising awareness of dementia, but we must make sure that the bad press are filtered out and not allowed to cover our stories.