Showing posts from April, 2015

Very good Morning at Northumbria University

Today I did the second of three presentations this week, on life with Lewy Bdoy Dementia, and it seemed to go down well.
This was working with graduate nurses, and they seemed genuinely interested and I saw many writing notes.
I was struggling again today because I could not always see my notes, and kept losing my place.
Since starting work with Northumbria University, I have seen a lot of very positive changes in the way hospital staff treat people in general, as well as better treatment for those with dementia
It's not down to me, but people in general, all helping staff at training sessions, from lecturers down to visitors. 
So now it's brilliant to see named nurses and doctors etc, going the extra mile, to put patients at ease when they are being treated or having investigations done in hospitals etc, 
I certainly noticed a difference recently, when I went into North Durham University Hospital for a hip injection. 
All of there staff from the consultant down all seemed to be so f…

Travel insurance

Travel insurance is high enough, without having an illness like dementia or cancer etc

But when you have an illness like this you get penalised with high costs, something that feels very wrong, it's as if you are penalised just for being ill, through no fault of your own
This also has a knock on effect,when your diagnosis changes as someone said the other day. 
The insurance company start asking why your diagnosis has changed, and I guess that the costs go up again,  because of all off the uncertainty, and that is terrible for those concerned.
At the end of the day, it's not as if we are going to go on a dangerous holiday, or do anything stupid.
So you are penalised for admitting that you have an illnes, and penalised if you don't admit to having the illness.
One holiday we paid just about the same for the holiday each as we did to cover my insurance, something that was staggering at the time.
So we have now got to the stage where we will not go away, because of the insurance c…

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 di…

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 …

Huge demand for Wearside dementia event

Huge demand for Wearside dementia event

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…

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 t…

Retiring and taking it easy

After giving it a great deal of thought, I have decided to retire as a volunteer with the Alzheimer's Society.
I first became a volunteer in 2005, after my diagnosis, and from here I never really looked back.
I spent a lot of time fund raising etc, and then got involved in campaigning, although until that point, the thought of standing up and speaking in a committee at work was a thought which terrified me, let alone stand up and speak in public.
I honestly do not understand what happened, but I ended up travelling the UK with the society, giving talks about living well with dementia.
My son thinks that my wife and I travelled around 25-000 miles in the process, but although I found it to be tiring, it was worth it in the end to hear that I had inspired others to stand up and change their lives
During this time I was also honoured to be able to do quite a lot of media projects, on radio, television and in the news press.
Through this I was honoured to receive a Civic Award from our Dist…

Time to retire and sit back

After Being a volunteer for the Alzheimer's Society since 2005, I have decided to sit back and retire.

I re registered as a volunteer two years ago, thinking that I could do more work, but found it difficult through health problems.

I have taken this decision because of my recurring Chest problems and now problems with my chest and knee, realising that it really is time to think of spending more time with my family.
Over the years I have enjoyed travelling around the UK talking about living well with Dementia. I was also a moderator on Talking Point, as well as being a media volunteer locally and nationally for the Society.
During this time I have worked on news articles in the national press, along with radio and television, something I have enjoyed.
My Son said he thought that we have travelled over 25-000 miles with the Society giving talks etc, but this all takes its toll, eventually and you have to sit back.
I have enjoyed being at conferences over the years, and have met ma…

Looking to the future

I am at present considering what I am going to do in the future, as it's become very obvious that it's time to give up volunteering for the Alzheimer's Society, due to continuous health problems.

However I have decided to spend the next few days deciding my future, and looking into other possibilities, where I am able to spend time in a more relaxing and less demanding way.

I have always wanted to spend a little more time learning photography, and trying my hand at art again.
 I used to be good at drawing but lost that art due to eyesight and co ordination problems, so this could be a challenge. 
I will carry on working in this area, but I think volunteering is now out of the question, as I cannot commit the time and energy any more. 

Working after a diagnosis of dementia etc

Many people lose their jobs after they have been diagnosed as having dementia.
But how many could have remained in work, if their employers had been more informed and caring.
I assume that people think that because you have been diagnosed as having dementia, you are unable to work or do anything constructive.
But if we got a diagnosis early enough, and got the medication, we would be able to carry on doing many jobs, and be paying tax, which is important to us all.
To get over this we all need to ensure that all employers are educated, so they fully understand what this illness,  is and then they can look at the person, rather than the illness.
Yes I know that I could not do my job as an engineer, as I could not remember large chunks of my job, and I guess I was not alone. 
But surely with more support and help we could be encouraged to get involved in industry, and help ourselves, by remaining active. 
After all, many people with this illness are encouraged to learn something new, so why no…

Getting a formal diagnosis

Getting a diagnosis of dementia is not as easy as it looks these days, nor is it as simple as Prime Minister David Cameron thinks it should be

This is because there are so many variations that it is difficult, to understand, let alone detect.

Many these days simply get the new diagnosis of Mild Cognitive Impairment, something which many consultants use as a cop out, because it still covers the same problems that we see in many dementia's these days.

After speaking  to our family doctor the other day, I was amazed at how he described how some professionals willingly label someone as having  type A or B dementia, when they in fact have no real idea, and won't until we pop our clogs.
Some consultants are now changing patients diagnosis from dementia, to Mild Cognitive , simply because the person has not deteriorated fast enough. However this has to be difficult if the person lost their job etc, through having been diagnosed as having any form of dementia.
Yet as my family doctor…

How can the NHS improve dementia care

How the NHS can improve care for dementia patients Treating people with dementia costs the health service £4.3bn a year, the illness currently affects more than 800,000 people

David Cameron gave a commitment that all NHS staff will be required to undergo training in dementia.
There are over 800,000 people living with dementia in the UK and numbers are expected to double within 30 years. Yet, despite the push for better dementia care, education and training in dementia for healthcare professionals remains patchy.
This gap in training is caused by a fixation on a “hospital only” model, instead of addressing the shift towards community care, according to the Dementia today and tomorrow report (pdf) for the Alzheimer’s Society. The document, published in February, calls for targeted initiatives so that appropriate education and training is provided for all staff across the NHS and social care.
Jeremy Hughes, chief executive of the Alzheimer’s Society, describes three tiers in dementia trainin…

Why dementia gets worse when the sun goes down

From the News Press

This article explains quite a lot to, me and my guess is that many others will read this with great interest, because it’s never as far as I know been explained by someone in the medical field before in such detail
Why dementia gets worse when the sun goes down - and what anxious carers can do to make things better  ·This is the final week of our major Good Health series on dementia ·We turn our attention to carers and what can be done to make life easier  ·In England there are more than 670,000 unpaid carers helping someone ·We explain what to if they become anxious as the light starts to fade
Looking after someone with dementia can stretch people to their limits, and there are many in this situation. In England alone, there are more than 670,000 unpaid carers helping someone with dementia. Here, in the final week of our major Good Health series on dementia, we turn our attention to the carers and what can be done to make life easier for them and their loved ones... Scroll…

Help create Amble as a Dementia friendly community

Help create Amble as a Dementia friendly community
Two information sessions are being held in Amble, to increase general awareness of dementia in the community. Dementia Friends is being run by the Alzheimer’s Society. It’s funded by the government and aims to improve people’s understanding of dementia and its effects to achieve this goal. At the moment Dementia Friends is only being funded to run in England and currently we can only run training sessions in England. A Dementia Friend learns a little bit more about what it’s like to live with dementia and then turns that understanding into action – anyone of any age can be a Dementia Friend. From helping someone to find the right bus to spreading the word about Dementia on Social Media, every action counts. Friends’ information sessions are run by Dementia Friends Champions, who are volunteers who have taken the Dementia Friends Champions’ training. Each Friends’ information session lasts around one hour. You will learn more about dem…