Saturday, 25 April 2015

Why all of this doubt

NA few days ago I wrote a blog about people who had been diagnosed as having a form of dementia, by a neurologist, and then having the diagnosis changed later by Old Age Psychiatrists.

Since then I have had many messages from people, who have gone through this process, and are now struggling to come to terms with the change of diagnosis.

To me if someone has been diagnosed by a Neurologist, then they are more likely to have been diagnosed correctly.

I am however staggered at the number of Old Age Psychiatrists, who are disagreeing with this diagnosis.  

Surely there is something wrong these days, when someone like a Neurologist who has a thorough training in the brain,  has their ideas over ruled by someone who has not specialised in brain disease.

It also concerns me that this is done without proper care, and very little explanation if any at all.

These people still have the same symptoms and problems, but it sounds by all accounts, as if they were re diagnosed simply because they did not deteriorate as the text books say they should.

By most accounts, they were simply told that they did not have any form of dementia, and should be pleased. To me that is a total insult to those who have been given the diagnosis, and have learnt to change their lives and move on.

If someone disagrees with a diagnosis, surely they should ensure that the patient is then sent back to see a Neurologist, where they can be  given a full reason for the change in the diagnosis.

Not  simply being told, that they do not have the illness and be left to cope with it on their own

Many of these people have been on medication like Exelon, and have tried their best to remain active, so this must explain something.

No one is put on Exelon or any other medication unless they have problems like dementia or Parkinson's in the first place.

One clinical psychologist told me a while ago, that most if this is down to the fact that the patients simply did not sound like text book cases, as they did not deteriorate as fast as they should, and hospitals do not want people on their lists for too long these days.

So is this all down to cutting costs and nothing to do with medicine, I do wonder

Perhaps if there is a clinician out there they may be able to explain this to all those who are struggling with this problem, and no longer know what their illness is any more


Officers trained as Dementia Champions

Officers trained as Dementia Champions


Officers from Bridgwater have been trained to be Dementia Friends Champions. The aim of the scheme is to improve people’s understanding of dementia and its effects.
Inspector Mark Nicholson said “We see the role as an extension of community policing and supporting vulnerable people on our patch. We have joined forces to run ‘Dementia Friends Information Sessions’ for local policing teams and neighbourhood watch groups to help them actively engage with people living with dementia”.
This is the second training day of its kind given to officers within the Somerset. The programme has been embraced by several local policing teams, with more training sessions planned for other areas.
Mark continued; “It’s a great use of resources from an already established community group serving local people. It is an extension of the good work already in the community.
“Being a Dementia Friend is about taking little actions such as to behave patiently with someone showing signs of dementia, spending more time with a relative affected by dementia, fundraising or generally raising awareness. This will help our community to be more dementia friendly and bring people closer together.”
The programme is also being offered externally with organisations such as colleges. If you would like Mark and the team to come and run a Dementia Friends Session within your neighbourhood watch group or organisation, please contact us on 101 and ask to leave a message for Mark Nicholson.

Huge demand for Wearside dementia event


Huge demand for Wearside dementia event

editorial image


ORGANISERS of a conference about important changes to dementia services on Wearside have asked people who plan to attend to register first, after news of the event was met with huge demand.

Dementia Into the Future has been organised by Action on Dementia Sunderland, to discuss the city’s Royal Hospital’s plans for dementia services, as well as changes to the Care Act and how people with the condition will be cared for.

We expect people in the early stages of the condition and their families and friends may wish to attend to find out more about what help is available in the city.

Ernie Thompson, chairman of Action on Dementia Sunderland
Chairman Ernie Thompson said the free event at the Stadium of Light, which takes place next Thursday, was likely to attract a lot of people, after a previous event two years ago saw almost 90 attend.
He said: “It was a tremendous attendance last time and we have hired a meeting space at the stadium that will take about the same number.
“But we are expecting a lot of demand, so it would help us if people who plan to attend register with us to help us make plans for the meeting.”
Other topics to be discussed will be an update on medical research into dementia, how members of the public can get involved in the planning of dementia services and how health and social services’ plans will work together.
A full programme has been arranged by Action on Dementia Sunderland, and experts will be on hand to discuss any issues people may have about dementia care.
It is estimated that more than 3,400 people in Sunderland are living with dementia, with that figure set to rise to almost 4,000 by 2020.
Mr Thompson added: “We expect people in the early stages of the condition and their families and friends may wish to attend to find out more about what help is available in the city.
“There is still some stigma about dementia, but we want to help people understand more about what it means and to offer education.”
To register to attend the event, which takes place from 2pm on Thursday and includes free refreshments, email actionondementiasunderland@gmail.com or phone 521 1438.

Wednesday, 22 April 2015

Don't talk to them, "Talk to me"

Just how many times have we heard a discussion about someone with an illness like dementia, and it seems that everyone is discussing the person, but not including them.

 I have been out with my wife at times, when someone has stopped to talk to hear, then you sometimes,  hear that upsetting sentence," How is Ken".

My wife sometimes gets very annoyed when this happens, and usually comes out with the same answer, he is right in front of you, why not ask him yourself, "he can talk for himself"
He is not a ghost, and what is more he has a tongue. 

I confess that when this happens, I usually turn and walk away, because I find comments like this to be offensive,  and the last thing I want to do is cause a war of words.

I know that other people have had the same problems, but it's quite upsetting, when people are so insensitive

However I do believe that it's because they simply do not know how to speak to us. 

We have this problem with one person who lives fairly close to us, and we have both got to the stage over the last few years, that we try to ignore him altogether.

It's not just the dementia side of things when this happens. 

I have been using a walking stick recently due to my balance and hip problems. 

The other day, my wife was shopping, and for some reason, I went into a different shop to do something else.

My wife came out steaming, because this person was there and asked, why I was using a walking stick?

I had passed and spoken to him over the last few months, and he never uttered a word about the stick.

This person used to have a wife, who had dementia, and I do wonder how he coped, or did he simply ask their carer the questions?

It's time to realise that we may have a brain illness, and may have bad days, but we do have feelings and can understand what us happening, so please talk to us, do not ignore us.