Happy New Year to all

I would just like to wish all of my readers a very Happy and prosperous  New Year.

Its been a very long year, but I have done quite a lot with dementia charities, with media training

 for people with dementia, and also helping with websites and writing blogs for other websites including the Department of Health website for the G8 summit.

 

This also took in media work, something that I have got used to over the years, as I was trained in this by the Alzheimer's Society assisted by a staff member from the BBC.

 

However I no that every media channel wants to do things there own way, so its not what you want to say, but what they can get out of your message

 

I was close to giving up on my blog as I was worried about the governments new guidelines, but I am assured that I am not breaching anyone's confidence so I may well be alright. I am well aware that the American and British Governments are monitoring these blogs, something I fine very wrong, but I guess there's nothing we can do about that anymore.

 

Tomorrow is the start of a brand new year, and one I hope will be slightly better than the last, not just for myself but also for everyone else.

 

So all I can say is Happy New Year to one and all

 

 

 

 

 

Accepting that we have dementia

Accepting and not denying that we have dementia is a major step forward, because it allows us to move forward.

We all look so normal, because unlike a broken leg it cannot be seen or recognised in the community, and therefore many people think that there is nothing wrong with us until perhaps we open our mouths, and it all goes wrong on the bad days.

I have got tired of being told that there does not seem anything wrong on my good days, so much so that I asked if I needed a seat band on my brown with the words dementia patient written on it.

I know that some days I doubt that there is anything wrong myself, then later the wheels come off and I know full well that I have the illness.

But I do feel that we need to raise awareness of this illness more than we are doing, and we need to do it ourselves, and not the professionals or the editorial teams, because its us who know what its like living with the illness and not them.

Getting people with dementia to talk about their illness, and their problems is a major step forward, and its one that can do so much to help others who have just been diagnosed, and feel lost and isolated.
They feel so alone, and tend to ask why its them who have the illness.

By stepping forward to discussing our problems we are all helping them to understand that they are certainly not alone, but among friends who also have the illness.

Many people have said in the past, that they will not go to a charity, but want to speak to people who really know what its like to live with the illness, somewhere where they can share problems, and ideas of how to get around everyday problems which we all struggle with at various times of the day, and I tend to agree with this

I have at times spoken to people working for some dementia charities, and its been blatantly obvious that they did not really have a clue about dementia, and in many cases thought that there was only one type of dementia, therefore we are all the same

IF ONLY THEY REALLY KNEW

However by working with these charities, talking to them, and alongside them, we can make a vast difference, and encourage everyone to accept their illness, and then move on to a new way of living while they have the chance. 

But I am hoping that through the next year we can make a real difference and help people come to terms with their illness, and be more outspoken, thereby helping others understand, that we are all in the same boat.

I learnt a few years ago that it is possible to live  life with dementia, if you are diagnosed early enough and get the encouragement to move on, so its up to us all to help others where we can.

Yes we have an illness called dementia, but we are just as normal as many in the public arena.

We just happen to have a brain which is doing is own thing from time to time 


  

Merry Christmas

I would just like to take this opportunity to wish all my friends around the world A very Happy Christmas, and hope next year brings more health and happiness to all.

 

 

Please remember those who have dementia

Please remember all who are alone and lonely, without the help and support of friends and family at Christmas, especially those who have dementia, or any other Neurological illness.



We all feel isolated at times, but think what it would be like to have no friends or family to call on.

I have a wonderful wife and family, who give me support when needed, so I am extremely lucky

You can help in many ways,




By visiting for a short while to see if they are alright.



Help with shopping



Taking them to church if they would like to go.



A few moments can make all the difference.

Very Interesting Vicar

Tis the season to be Purple (and Pink)
02/12/2013

A Newcastle Vicar has had her hair dyed in the church's traditional Advent colours of purple and pink in order to celebrate the pre-Christmas season and raise awareness and funds for an Alzheimer's charity based at her church.



The Revd Juliet Stephenson, 44, became Vicar of Holy Nativity Church, Chapel House in Newcastle's west end on the 26 September this year.



The church hosts the monthly Care ConneXion Café founded by church member Carole Lawson, at which those living with Alzheimer's and their carers can meet for friendship and to share access to a variety of support services and resources.



Juliet Stephenson's Advent hair colour change reflects the traditional three purple candles and one pink in an Advent Wreath, and enables her to blend well with other Advent-themed decorations in Holy Nativity Church during December.



"I'm raising awareness and money for the café and its users, so that in the summer they can have a day out at Beamish Museum, or maybe a 'sing song' from the good old days at the theatre - and maybe some extra sessions with the hairdresser and manicurist," she explains.



"I had my hair dyed purple and pink and will keep it like this for the four weeks of Advent. The colour is perfect as it reflects the season in the church and also it's the adopted colour for Dementia Awareness.

"My hair is quite bri
ght and matches the church's altar frontal and vestments very well! It has raised a few eyebrows, but as long as it raises money too - all will be well!"









 

Barnsley dementia centre is officially opened

The Buy a Brick for BIADS appeal raised more than £36.000 in eight months

A dementia support centre entirely funded by voluntary donations has been officially opened in Barnsley.

More than £36,000 was raised in eight months by Barnsley Independent Alzheimer's and Dementia Support (BIADS) to fund the centre.



The charity, founded in 2009, offers support and activities for people with dementia and their carers.

The centre, at Joseph Exley House on Dean Street, was opened by Barnsley Council leader Sir Steve Houghton CBE.



The charity launched its Buy a Brick for BIADS appeal in March enabling it to acquire the lease and refurbish the building.



Linda Pattison, chief officer at BIADS, said: "Our dream of opening our own dementia support centre has come true.



"Everyone connected with BIADS is extremely proud of the progress we have made in such a short time."

G8 Summit on Dementia

This is todays news headline, but I hope its not just another Government talking shop, and also hope that they do put extra money into this, rather than keep saying that the money is already in the system and just needs to be spent properly.

 

To me personally Mr Cameron is the wrong person to be doing this, as many don't believe anything he says these days, and I am now one of them 

 

I have always voted for his party until now, but never again, because he has done far too much damage to people like the disabled and poor who now find themselves victims, of his so called bedroom tax, something which is now also hitting people like carers who need a spare bedroom so they can get some well earned rest.  

 

 

 

The UK will aim to double its annual funding for dementia research to £132m by 2025, up from the 2015 target of £66m, David Cameron has said.

The prime minister's announcement comes before a dementia summit which is part of Britain's presidency of the G8.

Meanwhile, the Care Quality Commission (CQC) plans unannounced inspections of the care of dementia patients at 150 institutions across England.

The global number of dementia sufferers is expected to treble to 135m by 2050.
Growing burden
The disease is incurable and ultimately leaves people needing full-time care as brain function wastes away.

There is growing concern that some countries will simply not cope with the growing burden of dementia.

Analysis

James Gallagher Health and science reporter, BBC News

---

Dementia is heading towards being the biggest health and care problem of a generation so you'd think it would have the funding to match. Yet it really is the poor relation of other diseases.
In the UK, about £590m is spent on cancer research - approximately eight times the figure for dementia. Heart disease also gets more.
It's a pattern reflected around the world.
Part of the problem is that until recently dementia was considered a "normal part of ageing" whereas cancer has been documented as far back as ancient Egypt.
It means dementia research is starting from a low base.
The UK is aiming to double its spend, but this will still leave dementia significantly behind.
The Alzheimer's Society says it expects more.

It costs the world billions of dollars each year: £370bn ($604bn) in 2010, according to the World Health Organization.

Health ministers from the G8 nations will meet later to find the best ways to advance research.

Ahead of the meeting, Mr Cameron called on government, industry and charities all to commit more funding.

He said government would boost annual research funding from £66m, the 2015 pledge, to £132m, which will be adjusted for inflation, by 2025.

He said: "If we are to beat dementia, we must also work globally, with nations, business and scientists from all over the world working together as we did with cancer, and with HIV and Aids.

"Today, we will get some of the most powerful nations around the table in London to agree how we must go forward together, working towards that next big breakthrough."

Health Secretary Jeremy Hunt said: "This mustn't be about paying lip service to dementia, it must be about actually changing things - and the biggest thing we can do is make sure we have a proper diagnosis to people.

"By the end of this Parliament we will have doubled the money going into dementia research, so there is a real increase happening, and we have put £0.5bn into additional support for carers."

Labour's shadow health secretary Andy Burnham, commenting on the summit, said dementia was "one of the greatest challenges we will face in this century.

"The prime minister is right to focus on it and Labour will give the important commitment to research cross-party support."

But he added: "The sad reality is too many people with dementia are not getting the support they need at home and are ending up at A&E in increasing numbers. These are problems of this government's making."
'Rallying cry'
Author Sir Terry Pratchett, who was diagnosed with Alzheimer's in 2008, told the BBC's Newsnight "a lot more" money should be spent on dementia research and care.

 

Sir Terry Pratchett said he was angered by the lack of notice paid to dementia

"Every time I read a newspaper or look at a screen, some bad care has been found somewhere in Britain," he said.

Sir Terry said people were afraid of dementia, and that fear could be reduced if they knew they would be "well looked after".

The Alzheimer's Society charity said the summit was a "once in a life time opportunity".

Chief executive Jeremy Hughes said: "Given that this is the first time a prime minister has used the presidency of the G8 to take action on a single disease, we are expecting a rallying cry from the UK government.

"Yet the details we have seen so far are not enough.

"As we enter the summit today, the UK must show an injection of ambition, commitment to a long-term strategy and more funding."

There have been a flurry of funding announcements ahead of the talks including:

• The Medical Research Council (MRC) will commit £50m to improve treatments and delay the progression of the disease
• The Alzheimer's Society has promised to spend at least £100m on research in the next decade
• A new £3m "Dementia Consortium" will unite the charity Alzheimer's Research UK, two pharmaceutical companies and the MRC in the hunt for new drugs

Hilary Evans, from Alzheimer's Research UK, said: "It will be heartening to thousands of people living with dementia to see the UK leading the way in dementia research and know that scientists are fighting for them.

 

What is dementia?

• It is an umbrella term that describes about 100 diseases in which brain cells die on a huge scale
• All damage memory, language, mental agility, understanding and judgement
• Alzheimer's disease is the most common form, affecting 62% of those living with dementia
• It gets worse with time and eventually people are left completely dependent on carers
• It is incurable

"We boast some of the world's leading scientists in dementia, and these announcements are a clear backing of their crucial work - this support must continue.

"We hope this package of announcements will set a good example to other G8 nations to galvanise international research efforts."



Announcing its plan to inspect 150 English care homes and hospitals, the CQC said it would look at what needed improving, how to cut hospital admissions from care homes and ways to help people with dementia maintain their physical and mental well-being.



David Behan, chief executive of the health regulator, said: "We know that these people are often vulnerable because of their condition and can rely on a number of services across health and social care to support their physical, mental and social well-being.



"Our findings will draw conclusions on a national scale about what works well and where improvements are required."

A national report on the issue will also be published in May.

Dementia across the globe

• 44 million
  globally have dementia
• 135 million
  will have the disease in 2050
• By then
  71%
  will be poor and middle income
• $600bn
  global cost of dementia
• In the UK, cancer research gets
  8x
  as much funding as dementia

Spelling

I have been criticised for my spelling mistakes in my blogs, and I  can only say that I am sorry for this, but I don't always remember to spell check my posts.



Many of these look fine to me at the time, but its later that I notice mistakes



I must admit that I have many emails from large companies, with horrific spelling mistakes in them, so there is some scope for me, as I have Lewy Body Dementia, but some people still don't like it, which I suppose is fair comment.



I am sorry about this and I will attempt to try to remember in the future.

 

Not a good week end

Saturday was very hit and miss as far as I was concerned, but I managed to get through it without any mishaps.



Yesterday however was very different as I had problems with my balance all day, and then had problems with this blog later  on as I could not upload some pictures.



But today I am back to normal again or as normal as you can expect with this illness.

The blog is still playing up, but I have asked for some advice.



I also got my new distance glasses today which is marvellous, I just need to get my reading glasses fitted with the prisms and then hopefully that's it.

 

Animals and Humans

They say that animals have special bond with humans, and I have enjoyed a lovely bond with our sons dog Skye.



She is a sheep dog belonging to my son Mark, and is always full of endless energy which never seems to stop.



Apart from the exercises Skye never asks for anything else when she stays with us on the odd days during the week, although for some reason she never like me to go to sleep, and if I do she grabs my fingers and shakes them gently, as if to say wake up.



When my son has been down I try to take some photographs, so that I can try to keep my hand in with my camera, at least thats the idea on the good days,



This is a wonderful hobby when your brain works, or works well, but it causes a lot of stress when I forget the settings

 

 

 

 

 

 

 

 

Other animals and birds which give so much pleasure are Ducks and Swans at our local park

 

 

 

 

 

 

 

 

 

 

 

New drink could reduce chance of developing Alzheimer’s disease

A businessman has launched a soft drink could help to reduce the chances of developing Alzheimer’s disease and dementia

 

Richard Baister, creator of the Brainwave drink

The pioneering soft drink – which is a world first – will be available exclusively online from January and is available to pre-order now.



Called Brainwave, it has been developed by County Durham entrepreneur Richard Baister, based on research by a Newcastle University professor which shows a positive relationship between the daily intake of green tea extracts at a certain level and cognitive health.



The drink contains concentrated extracts of various natural ingredients which, when consumed in combination, enables the body to absorb the maximum benefit from the green tea extracts.



Research undertaken by Dr Ed Okello of Newcastle University has proved that regular consumption of this level of green tea alongside the specific active ingredients in Brainwave can significantly reduce the chances of developing Alzheimer’s disease or dementia in later life.



Mr Baister said: “Brainwave is the first drink of its kind which is designed to help consumers maintain a healthy mind.

” Brainwave can be pre-ordered at www.brainwavedrinks.com

Eyesight

After all of the eye tests I am getting my new distance glasses on Monday, with the prisms fitted, so no more double vision, Its been a long time, but I am pleased that its nearly over.



I just need to go back to get my reading glasses checked again in three weeks than its all over.



They do not know if its all connected to the Lewy Body Dementia or not, but I suppose we will soon find out if it gets worse.

  

Not a nice day

Its a horrible day with gales lashing the East Coast and what feels like freezing rain falling.

We have just been for a walk with our sons dog, and it was difficult to stay on my feet.

I normally like walking this dog but today is not a  good day for anything.

It sounds like the rail and road networks are being disrupted, due to the winds which are now getting much stronger since we came in.

Lloyds Banking Group get Dementia Friendly

As someone who has used Lloyds bank at home I can honestly say that the staff at our Bank are wonderful and helpful to me, partly because they now know me and many understand my problems which helps. But they are all undergoing training to become dementia friendly and that means a lot to myself, as a person with Lewy Body Dementia.

If I ever go in to the bank on my own, which happens occasionally, I am always asked if I am alright or need help, then they ask how my wife is. Its a very nice touch and always puts me at ease. 

 

 

Lloyds Banking Group get Dementia Friendly

 

• 0Share

It would be a lot easier for a loved one suffering from dementia to remain independent for longer if communities and organisations adapted to accommodate the affects it has on a person. Lloyds Banking Group and Alzheimer’s Society today launched a a landmark guide for banks and insurers to help improve the everyday lives of people affected by dementia.

The ‘Dementia-friendly financial services charter’ has been designed to help financial services organisations recognise, understand and respond to the needs of customers living with dementia and their carers.

 

Together, Lloyds Banking Group and Alzheimer’s Society are appealing to banks, building societies, insurance companies and other financial institutions across the sector to join them in making a commitment to families affected by the condition, so that people with dementia can plan ahead, access financial services and get help to remain independent for as long as possible.

Possible treatments for Parkinsons- Lewy Body Dementia etc

A research team from our Department of Biology and Biochemistry has identified a possible target to reduce the levels of a protein called alpha-synuclein – linked to both Parkinson's disease and dementia with Lewy bodies.

The findings, funded by Alzheimer's Research UK, have been published online this week in the journal Molecular and Cellular Neuroscience.

Dementia with Lewy bodies is a type of dementia thought to affect over 100,000 people in the UK, characterised by symptoms of memory loss, fluctuations in attention and alertness, hallucinations, sleep disturbances and movement problems.

Research has already linked changes in the brain in people with dementia with Lewy bodies to those happening in the brain in Parkinson's disease, in which the principal symptoms relate to movement.

To further investigate a common mechanism between the two diseases, Professor David Brown has been investigating a protein called alpha-synuclein.

Professor Brown said: "We know that alpha-synuclein forms abnormal clumps in the brain in dementia with Lewy bodies and in Parkinson's disease. It is thought that one reason for the distinct pattern of symptoms in the two diseases is due to the different parts of the brain affected by these clumps.

"It had been suggested that a related protein, called beta-synuclein, may act to keep alpha-synuclein in check and so we set out to see whether this mechanism could be a target for new treatments."

To do this, the team looked at how both alpha- and beta-synuclein were controlled at a genetic level by studying cells in the laboratory. They discovered that levels of the two proteins appeared to be linked and searched for common factors that could regulate the expression of both inside cells.

The team discovered two factors linked to cell stress that appeared to drive up expression of alpha-synuclein inside cells. They also identified a factor called ZSCAN21 that could drive up expression of beta-synuclein while at the same time, driving down levels of the culprit alpha-synuclein protein.

When they tested the action of ZSCAN21 in cells, they found it reduced the tendency of alpha-synuclein to form its characteristic clumps.

Professor Brown said: "What is particularly exciting is that when we looked at how the levels of these two proteins were regulated at a genetic level, we discovered a common biological mechanism that could tip the balance away from alpha-synuclein.

"Not only does this research provide clues to what could be causing alpha-synuclein to build up in these diseases in the first place, but gives us a target that could potentially stop it from happening."

Dr Simon Ridley, Head of Research at Alzheimer's Research UK, said: "While these experiments are still at an early phase in cells in the laboratory, they reveal an important mechanism to take forward for further investigation. Identifying common pathways involved in multiple diseases, such as alpha-synuclein in dementia with Lewy bodies and Parkinson's disease, has the potential to benefit many people.

"The next step is for the researchers to look in more detail at ZSCAN21 and whether its actions can be harnessed in the design of new treatments for these diseases. We are pleased to have funded this important work, especially in a climate where funding for dementia research is in such short supply."

 

 

 

Words don’t come as easy as they did

 

A few weeks ago while I was speaking to a large group of people about how my life has changed since getting this illness, and I realised that life is no longer as easy as it used to be.

I had said how my tastes in food have changed to so much that my wife does not understand it

My taste in music has also changed quite a lot, something which always strikes me as very odd, as I was always what could be called pretty conservative in what I ate, and listened to.

But I went on to say how my taste in politics has also changed, and this hit me more than anything else, when I have realised.

I was supposed to say that for some reason I have become vocal, where before I was always quiet.  But the shutters came down, my mind went blank, and I lost my place.

When I realised I said the first thing that came to my mind, and that was that I had become very “political” rather than vocal.

This completely threw me in the wrong direction, because I had not meant to say that I had become politically vocal, but it’s the way it came out.

I then had to attempt to apologise when my wife pointed this out.

But it really made me wonder how many times this has happened over the last few years.

My wife has told me that it’s happened a few times, but she thought nothing of it at the time, but after this event she pointed it out to the audience after the event, and it was accepted, but everyone that I know of.

A few people said that they have noticed this with other people who have dementia, so perhaps it’s part of our problem getting the right words out, without upsetting anyone, however I know that is easier said than done.

Sometimes when I panic trying to think of an answer to a question I have been asked on the spur of the moment. Either the wrong words come out, or the right words in the wrong order.

When this happens we go off on the wrong direction, and that causes more problems as someone usually takes it totally the wrong way.

The brain is a weird thing, and I suppose when it’s working well we don’t take any notice.    

 

Hospitals and Stigma

A report written by our dear friend Terry Pratchett.


Tackling the stigma of dementia is a long-sought aim of agencies working to raise awareness and care for people with the disease. A huge amount of work remains if this goal is to be achieved, and hospitals, which are at the very heart of communities, have an important role in raising awareness and encouraging holistic approaches to drive change.

 

Many dementia patients say that from the moment they are diagnosed, those around them feel somehow rendered incapable. In reference to his own diagnosis with early onset dementia, the author Terry Pratchett summed up this reaction quite simply: "People get embarrassed, lower their voices and get lost for words."

 

The reasons for such stigma are multiple, but the consequences almost always the same. As those living with dementia struggle to understand what is happening to them, they can become socially isolated from friends and family who are often just as afraid. Stigma is driven by lack of understanding, and the tendency to avoid issues we do not fully understand is all-too-evident when it comes to dementia.

 

Most people know little more than that it is a progressive condition, and can be inclined to shun the individual due to their own anxieties. Common misconceptions are, for example, that dementia only affects older people, who may already be viewed as failing physically, and this compounds the negative stereotype.

 

Dementia can occur at any age – albeit less frequently in younger people – and more than a million people set to be affected by dementia in the UK by 2021. It is encouraging that there is now a sharp focus on improving dementia care in the UK, and the commitment at Westminster-level to establishing "dementia-friendly communities" shows leadership at the highest level.

 

A truly holistic approach is needed, however, if we are to turn fear into knowledge and educate our communities, so that those with dementia are effectively supported and understood. Hospitals have a clear role in this process.

 

A "whole hospital" approach must be adopted across England and Wales to educate all staff, from porters to doctors, to embrace dementia care and ensure it is never considered "someone else's speciality". At the Royal United Hospital Bath NHS trust, three specialist dementia co-ordinators have been recruited who work with carers and act as a central point of contact for staff across the hospital who encounter, or are in charge of, patients with dementia.

 

This relatively straightforward measure has had a demonstrable impact. Carers are reassured that any member of staff who encounters a patient with dementia has adequate levels of training and awareness.


 Dementia champions on each ward also support this, ensuring patients displaying signs of dementia are recognised.

 

Personalising care is also important, to avoid adding unnecessary stress to what may already be a bewildering hospital visit. The Alzheimer's Society's This is Me document, which offers insight into an individual's routines and habits, is hugely useful in this respect.

 

Integration between hospitals and external agencies is also key to ensuring a joined-up approach. In Bath, regular meetings of a "dementia steering group", comprising of hospital staff as well as public, private and third sector representatives including the Alzheimer's Society, provide crucial dialogue between the hospital and residents.



Activities where the community immerses itself in the hospital environment are also of great benefit. Music therapy and reminiscence workshops with dementia patients led by locally-based therapists encourage a greater understanding of dementia, as does the "befriending service" where residents, including students at nearby universities, visit dementia patients on the ward.

 

Getting the environment right is also crucial. Recent refurbishments to make our older people's ward feel more like a home than a hospital, aim to provide acutely ill patients with dementia and their carers with the right practical environment, but with an appropriate level of emotional support too. News of this work has spread across the hospital to encourage others to follow suit. Ensuring clear signage and that clocks are visible to improve orientation, for example, can be adopted on all wards.

 

Society's reaction to news of the "dementia timebomb" we face has been one of fear, and dementia has become the condition people are afraid of developing above all others. But hospitals lie at the heart of communities and can lead the charge on providing exemplary care for people with dementia, while educating and engaging the community to dispel these fears in the process.

 

With 25% of people in hospital living with this illness, clinical leads must ensure people with dementia feel well supported, so that their independence can be preserved for as long as possible. There is no reason why patients with dementia that may be in hospital with other issues should not be empowered and have their self-esteem boosted in the process.

 

Dr Chris Dyer is consultant geriatrician and is leading the dementia project at the Royal United Hospital in Bath