Sunday, 20 April 2014

Time to Raise Awareness of Dementia Again

 Brought out each year, so I can remember what I wrote about raising awareness



 It’s time to start our yearly campaign to raise awareness of dementia, and as I am away on holiday at the time of this event, I am trying to, do everything I can before we go away
Dementia is an illness that no one wants, and it’s something very few really understand, because we don’t know what causes it.



 Many of us lose friends once we get the diagnosis, and that is very hard to accept, but most of this is caused by pure ignorance of the illness 

Many people refuse to accept the diagnosis when it is given, and then refuse help.



 Some people have said that family members refuse to accept the diagnosis, and even try to say that there is nothing visibly wrong with the person who has the illness. This is something which can go on to cause more stress to the person with dementia



 Many assume that everyone with dementia is the same, yet we are all individuals, on individual journeys, so no two people with any form of the illness have the same symptoms or problems.



Dementia covers a vast array of types of the illness, and as I was once told by a consultant, there are well over 120 variations of dementia, and no matter what anyone else says no two people go down the same route with the same symptoms, something which is difficult to grasp.



This illness is very difficult to cope with at times, because we lose control of our lives, sometimes losing our careers, our hobbies, and past times, our friends, and as time goes by things like driving go by the board

 Yes we may look as if we have nothing wrong on the outside, but we are starting to lose control of our brain, and this is difficult to grasp and understand when it happens

  Many General Practitioners don't really understand dementia 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, drugs or pure violence.



 How can that work.



 Surely we need trained professionals trained within the NHS and in industry these days.



We also need all care home staff to be given formal training, and qualifications before they are given a job in a care home.



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.


Many of us also do talks to trainee Nurses, Doctors 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.



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.



I have spoken to many student Nurses at training events and lectures etc., and it’s not the first time I have spoken at an event only to be told afterwards that the students had learnt more from us, than they did in a lecture.



If that is the case “where are the text books coming from”, and are they up to date.



 We should ensure that each person in a hospital or care home is treated with the same dignity and respect, that we would all expect from other people and nothing short of that will do.

 

Anyone who does not understand that, must be in the wrong job and should get out before they are thrown out, or cause major problems.

I am not alone with this, as many are not given the dignity and respect they deserve.

 TREAT US WITH THE SAME DIGNITY AND RESPECT THAT YOU WOULD EXPECT FROM OTHERS.



I am sure that if many hospital staff and care staff were treated with the same lack of respect they would indeed be the first to complain



But when it happens to people with dementia, it’s a case of they don’t understand so why bother



 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



 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.



Stigma



However one of the main reasons we wish to raise awareness of dementia, is that we all live on hope, that we can in our own little way go a long way to remove the stigma which we hear of every day in dementia.



To remove this, we must educate everyone about this illness, starting with school children, who in many cases are more alert to the illness and want to learn more.



Many of these children know of someone in their own families who has the illness, and they in turn want to find out how they can help this person live a normal life where possible. 



 Years ago this would have been thought of as unhealthy and wrong, but children these days are more open and honest about illnesses like dementia, and in many cases have been found to be more caring and thoughtful than adults, because they do not hold grudges, and do not think of these illnesses as barriers.



My own grandchildren know that I have dementia although to them its old timers, and although they are still very young, they are more helpful and thoughtful than many adults I have come across these days.



 These children know that I struggle, and they do not make me look silly or treat me as such, but in their own way they coax me through problems and help me when I get stuck.



It amazes me at times how these children sense that there is a problem and they never go, until the problem is resolved.



Yes this is all down to their parents, but this proves that it can be done.

They were taught about my problems at an early age, and even the youngest child learnt from the eldest, without any adult getting in the way

So why not start in schools and then spread out.



Today we are hearing more and more about dementia friendly communities, and places of work, and this is a brilliant start, but we must not allow this to stop, because that will mean that we have failed to do the one thing we set out to do and that it removing this stigma.



 I do feel that once we get to grips with this, we in turn will educate others that this is not as many think a “contagious illness”.



 Once we get through with this message we will be on track to remove the stigma we see today, and that will be brilliant for all who have the illness.



During the next few weeks we will be seeing more and more information on the internet about the coming Dementia Awareness week, so I would encourage all who have an interest to go out and help us with this campaign.

 
However there are many misconceptions about Dementia.

That this illness is age related?

There well over 16,000 people under the age of 65 who have this illness, some in their 30s.

People assume that everyone with dementia is the same, to coin the old phrase. I have seen one person with dementia so I know it all.

People with dementia cannot speak, or take an active part?

People with dementia are unable to get involved

Please remember that these people may not say a lot, but their actions speak volumes.

I always remember seeing people with Alzheimer’s disease at meetings, they rarely said much, perhaps due to pressure of getting things right in their minds.

In some cases their wives or family spoke up for them, without thinking and allowing the person time to speak for themselves.

But their actions did all of the answering, nodding, smiling or giving a thumbs up in agreement, or shaking their heads or hands when they disagreed.

They still had feelings, ideas, of what was happening, and what is more they still have a sense of purpose and the meaning of life, along with that small word with a big meaning HOPE.

These are all things which help keep this horrible stigma which is attached to dementia alive.

 

And please remember that we ask only for the following 

 

 Treat us with the same dignity and respect that you expect from others, and nothing less