Showing posts from September, 2013

North East museums nostalgia sessions help dementia sufferers

Taken from a summer news bulletin

When Beamish museum was conceived back in the early 1070s I don’t think anyone would have thought that some many people would have entered the gates. They certainly did not consider the fact that so many people with dementia would go and get so much from it.
We now see Beamish Museum and Projects being run by Tyne and Wear Archives & Museums are leading the way in helping dementia sufferers researchers have revealed
Beamish engagement officer Michelle Ball
Beamish Museum
North East museums are leading the way in pioneering projects helping dementia sufferers with the power of nostalgia.
Working with Age UK, the Alzheimer’s Society and care homes staff at museums across the county are turning to hoards of memorabilia to improve the health and wellbeing of people with the condition.
Having studied the impact of such reminiscent sessions, researchers are now looking at how the projects could be rolled out countrywide.
Revealed today, the research has found …

Action on Dementia in Sunderland

Action on Dementia in Sunderland 

A DEMENTIA group is hoping to expand its pilot services to help more Wearsiders and their families who are suffering from the illness.

The news came at Action on Dementia Sunderland’s AGM, which was held at The Place in Sunniside.

The organisation, which runs special memory caf├ęs for the benefit of Alzheimer’s sufferers and their carers, has piloted two programmes in the past year.

One is a hospital visiting service, which sees outreach support workers help patients cope with their dementia.

There is also a home visiting service, where carers are given a break from looking after their loved ones.

It’s believed there are about 3,300 people with dementia in Sunderland, with many of those still yet to be diagnosed.

“I think we have been, given the circumstances, very busy in the past year,” said chairman Ernie Thompson. “We have become a registered charity and been successful despite the economic climate.

“We want to continue both of the pilot schemes …


Today my blog is read in 102 countries and has now over  17.000 page views, something I never thought I would see, when it was meant as a simple online diary after my diagnosis of early onset Lewy Body Dementia.

Its nearly 11 months ago since I lost the old blog on Armistice day 2012, our wedding anniversary, when I somehow pressed the wrong button and lost everything

I realised that I had two chances, either let it all go or start again with a new blog,

Luckily for me I had done all of the pages on Windows Documents so they were all saved on my computer, and I have not looked back since. '

The odd thing was that all of the old page readers came back very soon after stating the new blog and I have far out done the old blog with readers and page views.

So its been an amazing day and could not have done this with out all over the regular readers from around the world. Its strange but I somehow feel that its all friends reading this blog now, because they all come back everyday.


Sue Ryder and Dementia

Charity Sue Ryder is to set up a new service aimed at improving dementia care in Doncaster.
The organisation aims to set up, in a variety of meeting venues across Doncaster, Peer Support Groups for people with dementia and their carers.

Sue Ryder will be working with local shops, businesses, clubs, groups and networks to increase the awareness of dementia and the role that everyone can play in helping to support the local community and individuals by providing information and guidance.

There is also a dementia befriending scheme that compliments this project and happy to discuss this.

The team will be on hand to identify aims, answer any questions and to discuss how you can get involved.

The meeting will take place on Wednesday 2nd October between 10am and 2pm at Town Fields Pavilion.
For any further information please contact Marilyn Cockett or Debra Blades on 01302 380077.

Well done this is brillant to see, and I can only hope that more support groups get set up in the future, so t…

Dementia and Spirituality

Some time ago I wrote a piece on dementia and spirituality, or what I saw as the meaning of this from a service users side of things. This took me around 4 weeks to write, simply because I could not be sure, what the topic was really about, even though I had been asked to give a talk about it.

I also had problems at the time finding the right words, which did not help

Spirituality means different things to different people, but it seems that there is a lot of deep seated upset about this subject as many people think its about religion and nothing else.

I suppose to me spirituality is about religion, but as a religious person, I did not wish to push my views onto anyone else as they are personal

However after a lot of searching on the internet, followed by a lot of thinking over two days I came up with my idea which I used, and it was a big success, So much so that I was asked if people and institutions could use it for teaching.

I had never considered this, and it came as a surpris…

All fixed again

After an hour of pulling my hair our I managed to get my computer to work again, and then after another half an hour, I managed to remove the software that was giving me problems.

So all being well its all sorted and back to normal.

 The computer is like my right arm and when it does not work, I am in trouble, because I do so much on it to keep my brain active.

Bad start

Its been a bad start to the day, as I seem to have messed up my PC at home.

 I was trying to remove a piece of software that was giving me grief, but that has gone wrong and the computer is having problems starting up again. So its back to the stop gap lap top which is saving the day again.

I think is getting close to the time when I have to stop, trying to do things on the computer like this, because my brain just is not working as it should, and that causes more problems than I set out with.

This was just to get rid of some anti virus software which was causing more problems than it needed, still if I cannot get it started I will have to take it to the repair shop next week.

Stress and Dementia

I often wonder what has gone wrong since my diagnosis of Lewy Body Dementia, but it would be easier to ask what has gone right.

When I was working the Bursar at my College used to say that she was amazed, when things went totally wrong, because I seemed to go into overdrive and thrived on stressful times. In some cases she would say that I was unstoppable, because once I had got the bit between the teeth, I would work all hours to get everything back to normal, even working through the night to achieve it.

I confess that I was shocked to hear that ,because as a University College Engineer, I was responsible for all of the College Buildings, the services, including all of the Electrical, Gas Water, Ventilation and Air conditioning systems, along with all of the maintenance team and contractors, and was on call 24 hours a day.

I know that times could be hard, especially when you were working through the night, and then up again at 6am to start on the normal day job, but it was my life …

DenDRoN and the need to be involved in Research

There is a need for everyone who has any form of dementia, and who can so,  to get involved in research. I say this because without research we will never find the answers to all of the problems we see in Dementia today.

I have been a member of DeNDRoNs, Patient Public Involvement panel for a few years and can honestly say that I have enjoyed it. As well as being involved in research we also spend time looking at future research projects.

I myself got involved in a research program recently, and was amazed and pleased at the results, because in the past, when I had my eyes tested I was simply fobbed off, by being told that there was nothing obvious so it had to be the brain,

This project was about eyesight problems in people with dementia, and this is now something which is nearing completion as far as I am concerned.

A problem was found and I am hopefully going to benefit from the results very soon.

This scheme was run by DeNDRoN, The Dementias and Neurodegenerative Diseases Researc…

Horses Mouth Mentoring

When I was told about Horses Mouth, I really did not know what it was, nor did I understand what it was trying to achieve, however it soon became part of my life and found that as someone with this illness,I could reach out and help others whether they had dementia, were carers, or family members or friends.

I had been asked to do this originally by contacts within the Department of Health in London, because they thought I had the right manner and was fairly careful about what I did and said, so it was an honour to give it a go, not expecting it to get as far as it did

I have helped quite a few people and feel as if I have gained many new friends along the way.
This is an independent and as far as I know its an International website, where people can go for impartial advice about an illness, or problem at work etc, and no matter what the problem is there is always someone there to support you day or night, although I might add that I am not.

Most of those on this website have experienc…

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 …

Holiday in Turkey

Today my wife said she wanted  to get away for a holiday as we are both very tired.

So we have booked up and are preparing for the holiday of a life time with a visit to Turkey early next month. This is a place we have always wanted to go to as it has so much history, and its where the East meets the West so to speak.

We both love anything to do with history rather than being beach dwellers, something I cannot do anywhere, so its something to look forward to all being well.

I thought that the insurance company would stop me going with my dementia, but they seem happy to allow me to go, so now its all down to planning what we want to see while we are there.

My wife is a bit fussy with her food but these days I will eat anything that's going including spicy foods, so that again will be interesting, as I don't eat English food while we away, if I can help it at all.

It would be interesting to see how the Turkish people see dementia while we are there, but there again it depends …

Do not distrurb as I am Concentrating

I often wonder why it is that when I am concentrating on getting something done, I can always guarantee that someone will stop me doing the work by asking a question, usually something either totally stupid or nothing at all to do with me.

These days it takes a lot to concentrate on everything I do, so it is hard, when something or someone breaks this concentration, and once it has been broken it takes a long time to start all over again.

I personally find this sort of thing to be very frustrating and annoying, because it is usually done by someone who should know better.

I can accept that some people may forget at times that we have these problems, but there are times when it does not make it any easier, and its very difficult to try to keep quiet, let alone tell them to disappear and leave you alone.

Children seem to sense that you are concentrating and tend to steer clear, where adults jump straight in with both feet, and give you a strange look when you get annoyed, because you …

Alzheimer's Talking Point

Alzheimer’s Society Talking Point Many dementia charities have a chat room or discuss point where people can go with their problems whether they have the illness, or are caring for someone with the illness, we are all going on this journey together, and by sharing the information we are helping each other out.

    A few years ago the Alzheimer’s Society set up a web page /chat room called talking point, where people with dementia, carers or family members, could go for advice, or just to discuss daily problems, and share information.

Since then it has really taken off and now has more sections to cover most aspects of the illness.
These pages are moderated by volunteer moderators, from all aspects of the illness, and they also come from various parts of the world, so there is a wealth of experience.
Many people come here on a night after they have been given a diagnosis, because as we all know that it’s after we leave the hospital or the doctors that the questions start to come, by which…