Wednesday, 11 September 2013

Let us remove the stigma in dementia for ever


There is a lot of talk about the stigma of Dementia, and I think I would like to explore it. It’s taken a long time to write this but here goes.


 When I look at all of this I am not sure whether stigma is the right word, I rather think that it should be more like discriminated against, just like third class citizens.


 When we consider that 40years ago cancer was still a dirty word which was stigmatised, and people who had it were treated as if they had a dirty sexual disease, something we know it was not, and thankfully this has now changed.


Dementia on the other hand was always treated in many places as madness and I do not think it has changed to day in a lot of places. But this is due to lack of understanding by the general public and lack of leadership by the government and some of the medical profession.


 I know that some in the Government circles are changing things because a few years ago I was honoured to be asked to speak at the Launch of the New Cross party group on dementia, and since then the group has grown and has some impact.


  When I look back, I can remember the stories of people with dementia being locked up in mental hospitals etc., because they knew very little about the illness and thought the wrong things. These poor people who have this horrendous illness are the victims and are treated like old day lepers by Society.


The stigma attached to this illness is unreal and unacceptable in this day and age, as we are dealing with an illness which is not self inflicted or asked for and yet it seems that some of today’s society treat us as if we had an infectious disease.


 Many people I have spoken to have this weird assumption that dementia is contagious, or easy to catch, when we know that it’s not. There are many misconceptions about dementia, as many think that you become illiterate or irresponsible once you are diagnosed.


Many think that it runs in families, which it does not, and as far as I am aware no one in our family ever had dementia

Like many I lost many friends when I was diagnosed, as many have these ideas that once you have been diagnosed you go down-hill fast, and or forget who you are talking to etc.



 Even now we have nieghbour’s, who if they see my wife and I at the shops, will often ask her “how I am” when I am stood there, thinking hello I am here and not a ghost. Needless to say I steer clear of people like this as it hurts when this type of thing happens


I suppose many of the problems are caused by websites which say that once you have a diagnosis your life is down to 5-8 years, when in fact through modern medication which has been proved to help, life is that much longer, so these places need to be upgraded.


 Someone I class as a dear friend in New Zealand, was diagnosed in 1993 and was given more or less 5 years, yet she is still going and is still travelling the world spreading the word and raising awareness, so that must prove something even though her x-rays and scans prove otherwise, as they show up, what is left of the deteriorated brain, yet she is going still and god willing she will last a lot longer.


 So with luck all of these websites will change for the best thereby helping us


We need to re-educate the nation about the illness, so that everyone knows that we are normal people, who had the misfortune to get an illness which closes the brain down.


Once we have achieved this people who have Dementia will start to admit that they have it, and talk about it rather than try to hide it.


I was once told that I was a fool by admitting that I had this illness, but why if we don’t talk about it we will never remove that stigma


 We also need to get better services in England so that we get the same treatment and services in all parts of the country and not as we see it today where it’s a post code lottery.

Care homes are now getting so expensive that our carers are now expected to look after us at home with little or no help from the government services.


 We are left to support from charities, who have been short changed the by government as well and now, and find it increasingly difficult to find funds to keep going.
 

Not only that, but the people who look after us, and care for us are treated with little or no respect by the government.


 It’s all well and good for Government ministers to say that Carers save the economy millions a year, but they get little if any thanks after that, and some get very little support from social services when they need it as they seem to go deaf.


Perhaps it would be different if they themselves had a family member who had or has dementia then they would respond faster


Sadly now people who self inflict are more liable to get better treatment than those who are inflicted with a brain disorder such as Alzheimer’s or Dementia.


 The costs of smoking and drink problems are something which is on the rise at a rapid rate and yet little is done to stop it.


The NHS is in dire straits these days and unless the self-inflicted problems are brought under control, illnesses like cancer and dementia will have their services cut back in the future, something which would be very sad and would have totally the wrong effect.


But we can change this if we all work together and should do so in the hope that this stigma goes one way or another.


 We should if we can go out and speak to those who are young and ready to take this illness on board, whether it is schools, although teachers refuse to accept any one with the illness to talk to their pupils


But church groups, students, doctors if they really are interested, and any other groups where raising awareness can really do some good.


I went to speak to a group of doctors once and left feeling that it was a total waste of time, as very few were interested and those were from Far East countries, the British doctors did not want to listen at all.


  I have offered and have spoken to many groups nationwide, and they enjoyed to talks and presentations given because they were genuine.


All we ask at time is for the travel expenses, which can be expensive on long journeys

It’s not a job to us it’s simply raising awareness.


If you look at websites like Face book these days, places where years ago, I would have said was geeks, and are now the places for illness like dementia. They do a lot of good work raising awareness and allowing groups to speak out.


These children are sometimes too nervous to go to a charity, but on face book they are anonymous, and they don’t have to face anyone, they are simply there because someone in the family has got dementia, and they want desperately to get involved and help out.


 Years ago their parents would have kept quiet about the illness and the children would never have heard anything about it, so these are some of the people we need to target, as they are the future where dementia is concerned, and they can help us to spread the word

I have heard it said many times that it hits the right cord and place when a presentation or talk is done by someone with the illness, rather than a professional, although some world argue the true professionals are those living with dementia,


So let us use these people with dementia and raise awareness while at the same time removing this horrible stigma once and for all. 
 
If you really want to know what life is like having and living with this illness, ask them and not someone else, don't assume that you know all of the answers.


Let us all spread the word and raise awareness of this illness and remove the stigma, so that it becomes a nasty word from the past and is no longer used

Stepping back

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