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

 

Monday, 14 April 2014

Dementia and eyesight problems etc

After over a year of tests on my eyes, which has ended with me getting new glasses fitted with prisms, I am starting to think that dementia causes many health problems

I knew that my hearing had become acute on certain days, but when my eyes started to play up it was a different game

Even with the new glasses I still have had problems at times, so I am now convinced that its all down to the dementia which changes how we see things

Although the prisms have stopped the double vision, I still get blurred vision at times, but that's life.

 I have heard that its down to the brain, which is starting to fail, due to dementia.

So on reflection I guess that if the brain is starting to fall apart, it stands to reason that other parts of the body will also fail, such as hearing and eyesight etc

This also explains why, I was always right handed and now my left hand is faster than the right, something that was distressing especially when typing. I got over this by using voice activated software on my computer

But this has also caused accidents at home when doing DIY projects, because my left hand got into many places it should never have gone, ending with burns and cuts.

This is a hazard which I find very hard to cope with at times, and has meant  that many hobbies etc, are now something in the past, never to be tried again.

Obviously this is all down to changes in the brain, although it does not help me.

It now means that when I wish to do something, I have to try to think first, but this problem is easier said than done, because I do not always remember to think things through.

After being an Engineer for 30 years, I now find that I am in the position where I can no longer make decisions where my own safety is concerned, and that is something which quite frightening.

All part of a brain which is disappearing.

Saturday, 12 April 2014

The Essential Guide to Avoiding Dementia



Supplied by The Dementia Book Club
www.hammersmithbooks.co.uk

Foreword written by Prof Graham stokes

A very interesting book
The book discusses the many forms of dementia, and the risks involved with the illness.

It also goes on to discuss 
Education,
Expanding the mind,
Nutrition,
Trauma,
along with
Physical and Mental illness.
If you are worried of developing dementia
The brain, a simple description with references to dementia

Quote
There is evidence that the brain is affected  by the clinical beginnings of dementia, up to 25 years before dementia manifests itself in an obvious way. The brain appears to have a vast 'spare' capacity, and it may be that, as evidence seems to indicate, a higher a  neutral reserve, delays the onset of clinical signs. What this might mean is that, the changes in attitude, activity, and what we all call 'personality', may begin many years before overt evidence of dementia, so that we are once again brought up against the 'which' came first question.

This is a very interesting book if you are worried about the illness, or are worried about

Trauma
This covers possible links between trauma and dementia. This can be a physical blow to the head or damage to the body from, for example, a traffic accident. Alternatively it may be of a psychological nature, caused by repeated distress in the past, the stress and horror of being involved in something like a bomb incident, or what used to be known as 'battle fatigue' and is now classed as post traumatic stress.

As a person who had a head injury in the past, this made a lot of sense to me.

I have read this  book, but confess, that the title left me wondering why anyone would wish to read this, because no one wants dementia, and as far as I have been told, no one really knows or understands what causes the illness. So here we are getting another persons prospective of the illness.

But looking at the possible causes etc, for me starts to make me wonder whether my own dementia was caused be industrial head injuries in the past.  When I was asked about these I confess that my memory is a bit vague, simply because, on one occasion, I remember falling from around 10 feet and hitting my head on the ground.  I vaguely remember what seemed to be an explosion in my head, but that's all.
I was on my own when it happened, so could not really remember if, I was out cold or not, and if so for how long.
I vaguely remember feeling very fuzzy inside my head, as I got up and walked away but that's all.

This has always puzzled me, all I remember was, getting up off the ground, and staggering back to our flat.
At that time I felt as if my head had caved in, and the next day I had an enormous bruise on one side of the head.


If anyone wishes to read about dementia, this is a good place to start, because Prof Graham Stokes, the person writing the foreword page of this book is very well known and respected.

So I do wonder after reading this many other people start to tie up loose ends, as far as their dementia is concerned

I have read many books about this illness, but this is the first one which has explained many of the problems
we hear of, but never get answers.

I know that we are well away from getting all of the answers to dementia, but at least I do feel that this helps.

I can only say a thank you to Mary Jordan for writing the book and the Dementia Book Club for allowing me to read it, and comment on my blog.

An interesting and well written book

Wednesday, 9 April 2014

Children and Dementia


Stories take from my blog about the Grandchildren

Explaining to Alzheimer’s or Dementia to children, can be very difficult, but I suppose the early we start the better it can be explained, and possibly accepted

When I was diagnosed with Lewy Body Dementia, my daughter 27 years old, who lived at home at the time, accepted the illness, but my son 25 years old could not accept it

I suppose it was easy for Claire as she was doing a biology degree, and had taken some of the problems on board, and had done some research into dementia as part of her course.

Eventually he accepted my problems and that is now history.

Someone once told my wife that my son possibly idolised, me and that was the problem,

This could not be happening to me

Things have now moved on

However my Grandchildren think I have Old Timers, and while they know about the title or the illness, they seem to understand the rest of it.

However some time ago my daughter Claire, tried to explain to our wonderful Grandchildren that I had Lewy Body Dementia, and thought the easiest way was to say that I had old timers illness, which sounded lovely.

I found it hard when the children would treat me with kid gloves at times, but it was Claire's way of protecting me at times.

On day we travelled down to London where we stayed over in a hotel for a night, before going to a meeting about Dementia.

After this we headed off to our daughters in Farnborough in Hampshire where we stayed for a few days. During the week I walked to school with one Grandchild or the other as both girls are in different schools.

However I do feel that it’s so nice when they hang on to your hand and talk to you, while you walk them to school, although I confess that at times it was very hard to take, and sometimes get emotional.

One day my daughter Claire had to take one daughter straight into town from school, to get her feet measured.

As things were going to be tight, I agreed to pick the other granddaughter up from school, so that my wife could keep an eye on the grandson who was still very young at the time and got into everything when you were not looking

So she asked if I would be alright, going up to the school to pick up the youngest from the primary school which is about 1 1/2 miles away.

I have walked this route on many occasions, and enjoy the walk, as it is relaxing, so I agreed to do it.

Having got to the school, I waited as everyone came out, and the teacher looked at me and asked who I was waiting for, and I explained.

I had seen my granddaughter wandering round the classroom, but she was in her own little world, and perhaps because she had not seen her mum she did not come out.

She asked where everyone was, and I explained as we were walking home.

On the way I asked what she had been doing at school and whether she had enjoyed herself.

She was quiet at first, but then started talking about spellings, and how she sometimes gets things wrong or spelt the wrong way, as some words sound differently to the way they are spelt.

I said that I loved spelling when I was at school, but these days I cannot always remember how words are spelt ( and without spell check) I would not be doing this, although sometimes spell check cannot fathom out the words I am trying to spell) so I am stuck. These days I have to break each word down, until I get an idea of the correct spelling

She looked up at me and said. But Grampy you have an excuse as you have old timers?

I confess that I was taken aback by this and felt very tearful as this little girl of five had remembered this, and I felt very humbled that she was being so thoughtful in what she said, and for someone 5 year old that takes some imagination.

We had a long talk going home, and after she had changed out of her school uniform, she came back downstairs and started talking again, sounding so old for her age. As Claire has said on many occasions she is 5 year old, yet there are times she sounds more like 35.

I had trouble trying to explain this to my wife and Claire, because I was still close to tears, the effect had been something I had never expected, as it was so spontaneous.

So it proves that children can understand more about this illness that we accept, and possible think more about it than adults.

Over the last two years things have got much worse, but these children have kept up with me, and always show a lot of care and respect.

Over recent days I have been getting confused with people’s names and today I kept calling one grandson by the wrong name.

He is only four and a half, in the end he turned to me, looked me straight in the face and said, don’t worry Grampy ,you have old timers, so we understand that your memory is not working as it should be.

I understand when you call me by the wrong name.
How can you answer that, when someone that age says things like that?



This has proved one thing to me and that is this. The sooner we are able to discuss this illness with youngsters the better, as they certainly seem to have a way of accepting the truth were adults cannot

So one way or another we need to start educating children when they are at school as these youngsters will help us remove the stigma in the future, and they will help educate others as they go.

There have been many instances where they have done and said things which are amazing but sadly this all disappears into the past, sometimes never to be remembered ever again.

Through all of this the eldest Granddaughter who has Asperger’s, is the most protective, and tells the other two what they can and cannot say or do.

So with all of her own problems she really cares and hangs on to me all of the time.

I really fear for her when my illness comes to its conclusion, because as Claire has said, she will be hit the worst, we have formed an inseparable bond, something that no one can fully understand, but we get on so well, even though she has her own problems.

 

Monday, 7 April 2014

Confused and new day with a new start

I have realised today that I am no longer going to be able to type using the keyboard, as I am making too many mistakes, something which I find hard to accept

So today I am going to start using voice activated software to write everything like my blog and presentations.

This is going to be difficult, but its the only way I can carry on.

My eyes are struggling to see the keys on the keyboard at times, so I will have to change everything to see what happens

I am going to reload the software today, so that I can use the laptop computer, to do all of this, and then perhaps I will give it all a try tonight

This is made much worse by the fact that I am out of sync again when typing. I had problems months ago then it settled, but now its started all over again. For some reason my left hand has got faster than my right when doing things, yet I have always been right handed, so I am totally confused as to what is happening

This could account for the mistakes I have had at home when doing things, and sometimes knocked things over with my other hand

I can only put this down to a confused brain somewhere along the line. We lost our old consultant and I am not due to see the new consultant for a few months, so I cannot ask anyone what is happening
 

Sunday, 6 April 2014

Dementia Friendly Society in the UK

There is a lot of work going on to make the country more dementia friendly, but this is also causing a lot of trouble as many people with dementia feel, that dementia is being used by this government for political reasons.

Many wonder if this is just another government target which must be met?

I think this is just something pushed out by Mr Cameron for his own purposes, and does not really achieve very much.

It may make us more aware of dementia, but there is a danger that after taking this training, you assume wrongly, that you understand everyone who has the illness.

I have done a lot of work raising awareness of dementia, and have done dementia champions training, although if I am honest I did wonder why I did it, because I think I knew more about the illness than the trainer.

I think this is what people are complaining about, when I have asked, because they realise that the trainers, are unable to answer basic questions about the illness.

Many of these trainers are not properly trained as far as dementia is concerned, and this raises many eyebrows, in society and business today

I have worked with dementia charities for a few years and have been totally shocked at the lack of knowledge their staff have when it comes to this subject, or they think they have heard about dementia, so we are all the same?

I know that many people claim to know everything about dementia, including many in these front line charities, but then they make silly mistakes, which make many with the illness feeling angry
and annoyed.

Many of these charities think that everyone with dementia is the same, with the same symptoms and problems.

But they are not they are, as a leading professor said, we are all individuals on individual journeys.

I know that there may be around 10 types of dementia, but as I was told by a professor in Dementia, there are well over 120 variations and that is climbing every day, so no one can know it all, but they should at least have some good training before being let loose on society

It is my own opinion that this training should be done by qualified trainers, and not as many say
ex graduates in their first job.

The reason being that Dementia is a sensitive illness, and should be treated as such.

However one thing has puzzled me for some time, and that is the use or should I say the lack of use of people living with the illness.

Many people with dementia have had to to be trained as dementia champions, even though they are living with the illness, and in many cases knew far more about the illness than the trainers.

This does make many wonder what is going on, because we should be using people with the illness to explain our problems, not using others, who have little or no real idea about what its like to live with dementia.

No matter how many events I speak at, I always hear the same things, and that is this. We can listen to all of the professionals speak about dementia at events, but you always get a better picture from someone who is living with the illness, as it comes straight from the heart. Warts and all.

So why don't charities use these people as they do in Scotland and other major countries around the world these days.

I think the answer is that they would rather use their chief executive or well known personalities, who may well have had a father or mother with the illness, rather than use someone with first hand knowledge of the illness ie, a person who has it. They think in their wisdom that these people have a bigger impact that someone living with the illness

This leads myself and many others to believe that we are only there to be used, as and when it is necessary after which we are hidden from view, as if we were not good enough.

I have spoken to many businesses and was always shocked when they told me that they had been trained to deal with dementia, yet they had a better response from staff, when it was done by someone with the illness later on.

Most of these comments come back to the same thing, and that is, the training they were given, could have been done better.

If they want dementia training they wanted it from someone with a good knowledge of what it is like to live with the illness.

I use our bank most weeks and the staff have told my wife, that after I spoke to them at one event, they know what to look for in others, or at least have a better idea.
 
By watching me they have learnt more about this illness and have a better of what to watch for

So is this dementia friendly training really working?

I do hope that this does work, as we need to do somethng positive, in raising awarenesss of dementia.
But at the same time we must be careful who we train, because there are too many people out in this world who could use it for the wrong reasons 

The positives

However  there is a great deal of good work being done around the country, much of which is being done independently, by people who really care.

We see this in communities like Corbridge on Tyneside which is attempting to be a dementia friendly community, which is a bigger step forward and one which should be applauded.  

This was set up by a community leader who wanted to help those with dementia, and he had the support of many shop owners etc, in the town.

But to do this they needed all of the traders in the town to take part, and that had positive results, because they all seemed prepared to take part, and for the right reasons.

This proved to me that communities can work wonders, if they are united, and in many cases they can do a lot of this, with or without the support of charities. This is because these people understand the needs of those in their locality better than any charity could ever do.

We need this to work and work well, so let us all hope this works and also hope that people with dementia take an active part in training.