I have spent the last four weeks trying to write this, as I was getting very angry at the way the press publish some stories about dementia. I had major problems using the computer and spelling words correctly, so I hope this works
I do feel that the Media need to be more responsible in their reporting of dementia issues, so that they do not reinforce stereotypes and stigma, just to get an eye-catching headline
I do think that the media do have a lot to answer for as far as dementia is concerned, and unless things change they will carry on, causing unnecessary distress to those with the illness
The reason for saying this is:-
We see constant headlines telling us that someone has found a cure or a miracle treatment, but it’s just leaving those with the illness to think that things are going to get better, when in reality it is not likely to happen for years to come.
We see stories of foods which stop the illness, but can that be true.
We see one moment that the Mediterranean diet is good for dementia, and then the next moment it does not work?
They use terms like Service User and Sufferers in dementia, terms which many with the illness hate. At the end of the day who wants to be classed as a user of any kind, it’s so unfair to class a person with dementia as a user, let alone a sufferer.
I think that main concern about user these days, is that many drug addicts call themselves service users, and many of us feel insulted to be in the same class as them, as we have done nothing to get this illness, it’s not self-inflicted
Yes we have this illness but it’s the complications which cause us to suffer.
I suppose we had the same with cancer in the 1960s
There are far too many stories and stories with a negative slant in them.
They still class this illness as age related, when in fact we know that is wrong, as there are thousands of people well under the age of 65 who have been diagnosed as having the illness. Many things like this help keep the stigma in dementia going as many, feel that the press don’t understand the illness.
Assistive technology and tracking devices
Recently we saw a story covering assistive technology and people with dementia, but they did not seem to go out to people with the illness, to ask whether they would want to use it or not.
However, it seems that they asked others to comment, but did these people have any knowledge of the illness or not. There are many out in the big wide world who are full of information about what people with dementia, should and should not do, but I really wonder just how many have a basic idea about our lives.
I understand that a police force wanted to cut down on the high costs and time; they use up trying to finding some with dementia, when they got lost or go missing.
They said that they would do this by using a tracking device, something which many people with the illness carry just for their own peace of mind and security, as well as being able to carry on with their freedom for a bit longer without carers and family members tagging on.
Then the other day I heard a story about a pensioners pressure group saying, that it was wrong to use equipment as it was against our civil liberties, as it was something which was used on prisoners.
So did they know what they were talking about, or had the assumed wrongly that it was the same equipment i.e. “Tagging”.
It seems to me that the press should have covered the story properly, so that everyone would have understood properly what was being stated in the first place.
Tagging is an item used to see where people are, when they are on parole from prison and is worn around the ankle.
A tracking device for people with dementia can be a watch or pendant, and has an emergency contact button on it if we get lost or need support. Some can even make an emergency call, if they are confused or get lost. A big difference to tagging?
If a person with dementia is happy with it and can see the difference as well as the benefits why can’t others use their brains and read the article properly, and allow us that extra bit of freedom, without constantly telling us how to live our lives.
At the end of the day a mobile phone can be tracked by satellite so what is the big story here.
Many of us who have dementia have publicly stated that we would gladly wear or carry a device, if it would help others to find us faster, and in a more cost effective way, rather than costing the public purse thousands of pounds, and many man hours, if we get lost or confused.
If this technology is introduced to the person with dementia when they are in the early stages of the illness, it can help us to be more confident And enjoy our freedom while we can without our carers being worried about what we are doing or where we are.
Screening people for dementia
In another instance it was reported in the press that Doctors and Researcher’s, were against screening people early for dementia, yet they had not said that in the first place.
I think the doctors concerned were looking into whether it was going to be feasible to do this when there was no miracle treatment available, to everyone who was going to be diagnosed as having the illness.
To be honest I have to agree with this research because, if there is no way of stopping the illness i.e. a cure or a good way of stopping it in its tracks, then what is the point of having an early diagnosis.
I suppose it lets people like myself, have the extra time to get their lives sorted out, and enjoy what time they have left.
But in any case how would you screen people for dementia?
What would be the age groups involved and would there be a cut off age?
As we understand it there are around 12 main types of dementia and around 120 variations, so how could this be covered properly?
Is it feasible to do this screening and would it be cost effective?
Ethical issues, when there are no known cures available, and medication that is available does not work on every type of dementia?
Screening for cancer can be good as there are treatments that work, but what happens to those of us with some form of dementia.
So what are the answers?
The press seem to go out of their way to make life uncomfortable for all in dementia research, even though they are trying their level best to come up with some good treatments
I suppose what we need like it or not is a way of controlling what the press say.
This will stop them having headlines talking about a miracle cure for dementia, when in all reality the drug being talked about is still being trialled on mice, and no one really knows if it will work or not.
This type of headline is very bad for all those of us who live with this horrible illness, as it leads us to believe we may be cured, very soon.
Some of this could be caused by pharmaceutical companies saying they have found a cure, but surely it should not be in the press, until it has been proved to work on humans rather than mice.
Many people with dementia would trial these medicines if it had a chance of working,
I know that by controlling the media we could end up with no good stories about dementia in the press, so perhaps we more responsible reporting, which would be better for those who live with the illness, and want nothing better than a cure.
But I think a lot of the damage is done by editors who are just out to grab a good headline at our expense. The reporters in general do a very good job, but it’s the editors who rewrite the peace for better headlines, so it can get more readers, many are not interested in the facts, nor are they interested in people who have this illness.