Raising Awareness

·         It’s time to raise awareness of dementia again, although some of us are always raising awareness in the background for years, without a lot of publicity, but many of us do it to help those who cannot help themselves, and we want things to improve in the future.
I have never done this for personal gain or publicity as it is a very emotional subject, and to be honest, I would rather not know about the illness in the first place, but would prefer it to be something from the past, but I am stuck with it and have to get on with life as best I can.
Dementia has taken over as the disease that no one wants like Cancer was in the Sixty's the "BIG C" as it was called and no one would talk about it as if it was a dirty disease.
But like dementia no one asked for it and in most cases we don't know what causes it, and until we find out the causes, there will be no cure for it.
I have Lewy Body Dementia, and often wondered if I got something from working on live electrical circuits as part of my job. It was not the best place to be with your hands inside a live electrical distribution board with your head just outside watching what you were doing, and it certainly was not a safe or healthy job.
But I enjoyed doing it all hours of the day, and would not have changed it, until this illness kicked in.
Dementia covers a vast array of types of the illness, and as I was told by a consultant once there are well over 120 variations of dementia, and no two people go down the same route with the same symptoms, something which is difficult to grasp.
Many people had only ever heard of Senile dementia, but those day are long gone, where people with the illness where put in wards out of sight, as many thought they were simply mad.
This is something that I find very hard to grasp. Yes we have bad times and we cannot control what happens, but we are certainly not mad, it’s just our brain is doing things its own way and making us do things that we would not normally do.
Dementia is something that is difficult to understand and many General Practitioners don't really understand it, let alone know how to diagnose it, and therefore we need to have more training in the dementia awareness campaign, but not just training for doctors, but all medical staff, along with all those in the public services, police fire brigade and ambulance services, so they can understand that when someone gets agitated in a strange like a hospital or an ambulance, it could be an illness like dementia and not something like drink or drugs.
Dementia is a horrible illness, and there have been days when I honestly wished it would all just end, as it gets distressing losing control of your life this way. But like other illness in the early to mid-stages, we have good days and grim days, but the thought of what’s around the corner terrifies me, and I don't want to think about it. Of cause dementia can also be made worse when we get things like infections or other illness, so life is anything but straight forward.
I am not frightened of dying, but I am terrified of losing my dignity and control of my life.
I am not alone with this, as many are not given the dignity and respect they deserve. In fact it’s time that this was drilled into all staff including care home staff.
If you cannot do that than you’re in the wrong job

When we get this message through we may start to get somewhere, as we hear far too many cases of people with this illness being abused in care homes and hospitals these days, something which in my view is a backward step not a forward one as we would all expect in this century
We see articles in the news press each day, about dementia, but there is nothing positive it’s all negative articles about abuse etc. This week however was pretty good, as we heard that at least one hospital in the UK is setting up dementia friendly wards, with dedicated staff, something which is brilliant and well over due.
I know that money is short in the health service, but to me it’s spent on the wrong things by the wrong people, time and time again.
I do think it’s time to change the standards and bring back hospital Matrons, as they know what’s needed and are more in control than some pen pusher, who was brought in to run the hospital, but has never done a day’s work inside a proper hospital.
How can that work, surely we need trained professionals trained within the NHS not in industry as we see these days.
We also need all care home staff to be given formal training, before they are given a job in a care home and I do think this is something that the National Institute for Clinical Excellence should push for and make it mandatory, so there is no excuse for abuse or mistreatment.
People with dementia can have an important role in all of this, by going out and being allowed to speak to staff in hospitals and care homes,
Many of us also do this, along with talking to trainee Nurses and Social Workers at Universities, and this work must carry on if we are to succeed in getting this illness more recognition, and also get standards raised, so they all understand what our lives are live on a daily basis.
It’s all well and good campaigning in newspapers, but to be honest who many people reading papers, actually read articles about dementia. Along with the Television companies don't cover dementia, very much as it’s not a very sexy subject to cover, so it’s hit and miss when they actually show anything about dementia unless it’s about abuse.
So let’s all start campaigning in the hope that lives will be changed over the next few years and dementia will get better press coverage, and also with a bit of luck some new medications which will either help us live longer or cure thus illness.
Thank goodness for voice activated software on PCs and also spell check which helps us in our lives.



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