Monday, 31 December 2012

Happy New Year

I would just like to take this opportunity to wish all my friends  around the world a very Happy New Year.


Difficult weekend

Its been a difficult weekend, and I guess its all down to us getting ready to move back home again. I found that I was struggling to work things out properly and made a mess of a few jobs which was very upsetting.

I am now wondering whether its time to stop doing some jobs, and just do the work I am comfortable in doing.

Perhaps when we get home the pressure may be off me and I may relax a bit more

I rely on this blog to keep me going, once I stop doing this I am finished

Sunday, 30 December 2012

New ideas using schools

New monthly café to help people with dementia opens

A café designed to help people with dementia has been set up by school pupils.

Sixth form students from Princes Risborough School, backed by the town’s Rotary Club, will run the Forget-me-not café monthly at the Princes Centre.
At the opening people were served refreshments and chatted with the pupils, who joined in with water colour painting, dominoes and jigsaw puzzles, while a Rotarian played the piano.
The school’s interact club is trying to raise money for a Smart TV for the café which will allow a library of yester-year experiences and entertainment to be downloaded and shown to stimulate the long term memories of those with dementia.

My view
What a wonderful idea and I really hope it works, as schools are the place to start if we really want to move on and remove the stigma which has been attached to this illness for years.

School children are very thoughtful and want to help as I have found with my grandchildren, so why not give them the chance.
I have tried to go inti schools to talk to school children but the school officials are not remotely interested, but perhaps its time they listened to others and did something useful for the community

Saturday, 29 December 2012

Brain scan 'can sort dementia by type'


Frontotemporal dementia on MRI scan Tell-tale shrinkage of the frontal and temporal lobes on an MRI scan

Scientists say they have found a way to distinguish between different types of dementia without the need for invasive tests, like a lumbar puncture.

US experts could accurately identify Alzheimer's disease and another type of dementia from structural brain patterns on medical scans, Neurology reports.

Currently, doctors can struggle to diagnose dementia, meaning the most appropriate treatment may be delayed.

More invasive tests can help, but are unpleasant for the patient.


Start Quote

This could be used as a screening method and any borderline cases could follow up with the lumbar puncture or PET scan”
End Quote Lead researcher Dr Corey McMillan
Distinguishing features
Despite being two distinct diseases, Alzheimer's and frontotemporal dementia, share similar clinical features and symptoms and can be hard to tell apart without medical tests.

Both cause the person to be confused and forgetful and can affect their personality, emotions and behaviour.

Alzheimer's tends to attack the cerebral cortex - the layer of grey matter covering the brain - where as frontotemporal dementia, as the name suggests, tends to affect the temporal and frontal lobes of the brain, which can show up on brain scans, but these are not always diagnostic.

A lumbar puncture - a needle in the spine - may also be used to check protein levels in the brain, which tend to be higher in Alzheimer's than with frontotemporal dementia.

A team at the University of Pennsylvania set out to see if they could ultimately dispense of the lumbar puncture test altogether and instead predict brain protein levels using MRI brain scans alone.

They recruited 185 patients who had already been diagnosed with either Alzheimer's disease or frontotemporal dementia and had undergone a lumbar puncture test and MRI scanning.



  • There are many causes of dementia, with Alzheimer's the most common
  • More than half a million people in the UK have Alzheimer's disease
  • Frontotemporal dementia tends to affects people who are younger - under 65 - and can affect a personality and behaviour
  • Other types of dementia include vascular dementia and dementia with Lewy bodies

The researchers scrutinised the brain scans to see if they could find any patterns that tallied with the protein level results from the lumbar puncture tests.

They found the density of gray matter on the MRI scans correlated with the protein results.

The MRI prediction method was 75% accurate at identifying the correct diagnosis.

Although this figure is some way off an ideal 100%, it could still be a useful screening tool, say the researchers.

Lead researcher Dr Corey McMillan said: "This could be used as a screening method and any borderline cases could follow up with the lumbar puncture or PET scan."

Dr Simon Ridley, Head of Research at Alzheimer's Research UK, said: "This small study suggests a potential new method for researchers to distinguish between two different types of dementia, and a next step will be to investigate its accuracy in much larger studies involving people without dementia.

"While this method is not currently intended for use in the doctor's surgery, it may prove to be a useful tool for scientists developing new treatments. The ability to accurately detect a disease is vital for recruiting the right people to clinical trials and for measuring how well a drug may be working.

"Ultimately, different causes of dementia will need different treatment approaches, so the ability to accurately distinguish these diseases from one another will be crucial."

The only drug currently licensed in England and Wales for treating frontotemporal dementia is rivastigmine.

There are four licensed treatments for Alzheimer's - donepezil, galantamine, rivastigmine and memantine.

Friday, 28 December 2012

Better today

I am feeling a lot better today and my hearing is not as sensitive as it has been.
We are travelling home today so i am hoping that the journey will not be too bad.

Thursday, 27 December 2012

Not a good day

I have had a bad start to the day, and just feel like curling up in the corner of the room and sleeping.

I think its the fact that I am tired, and with the Grandchildren around I am fining them very tiring, which is very sad as I love them dearly, but its their constant attention that is difficult at times.

I think the noise is also stating to affect me as well, but I have to keep going as we head off home tomorrow and that could be stressful as the trains  could be full, and it will be a very long journey due to all of the flooded fields at the track side. I don't think I have ever seen so much water in the fields as these last two years.

I hope things improve so I can enjoy the rest of my stay at my daughters

Wednesday, 26 December 2012

Much better night

Noise and Lewy Body Dementia

 I have always struggled with noise since being diagnosed with Lewy Body Dementia, and this Christmas id no different.

Over the last two days at my Daughters I have had a rough time, but it’s hard for the Grand children to do anything without the noise, and I would not change them.

When things get bad I have to go to my bedroom and rest, but there are times when I can noy do that including meal times.

There are also times when people with very deep voices cause upset, as their voice level is difficult to cope with.  These voices seem to boom at the bad times.
Coupled with this I have not had a good nights sleep and am  very tired as I have had three bad nights in a row 

 I get very upset after these graphic nightmares, but I suppose that I am lucky they don't happen every night

Last night however I had a good night’s sleep and feel much better this morning although my hearing is still off


Tuesday, 25 December 2012

Thank you

I would just like to thank everyone who helped me when I set this blog up as it gives me so much to concentrate on.
I have included one or two articles from the press which cover dementia, and I will ensure that all of the writers names are included next year as I feel it is very important
These names were omitted due to me not thinking straight in the passed, but this will be corrected in future

I included these press items as they were important to prove that things are moving in the right direction as far as this illness is concerned

Thank you all again


Monday, 24 December 2012

Holiday reunions may reveal memory problems

During the holidays, many people have the chance to reconnect with loved ones. As you visit with relatives and friends — particularly older people — you may notice changes in their behavior, speech or memory. Changes like forgetfulness, confusion, irritability or a sense of being disconnected from events may be signs of dementia or Alzheimer's or they could be linked to normal aging. How can you tell the difference?

From misplacing our glasses, struggling to remember the name of an acquaintance or forgetting the date, many of us exhibit what could be interpreted as signs of Alzheimer's or other forms of dementia on a near daily basis. Yet these behaviors, when seen in older adults, do not necessarily signal Alzheimer's or a memory disorder, either.
If they have always been prone to misplacing things or forgetting names, it may not be cause for worry. However, if this represents a change, it's time to take action.
Dementia places people at risk on a daily basis, as taking medication, driving and cooking all become dangerous. Yet it is easy to miss true signs of dementia. An older adult may impress family members by recalling, in detail, events from their youth.
But a sharp memory for long-ago events often goes hand-in-hand with an inability to create new memories or to recall recent events such as what the person had for lunch.
Signs of Alzheimer's or dementia include sudden personality changes (an extroverted person may become very withdrawn, or vice versa), dramatic changes in mood, or loss of initiative. People with cognitive difficulties may have trouble recognizing and using language (it's important to rule out hearing loss). They often repeat themselves, and sometimes lose the ability to complete familiar processes, like making a favorite recipe or dressing themselves. Perhaps most worrisome, people with dementia may exercise poor judgment, using household tools in a dangerous way or taking risks while driving.
If you spot any of these warning signs in a loved one, they may require evaluation:
■ Memory loss
■ Difficulty performing familiar tasks
■ Problems with language
■ Disorientation to time or place
■ Poor or decreased judgment
■ Problems with abstract thinking
■ Misplacing things
■ Changes in mood or behavior
■ Changes in personality
■ Loss of initiative
While it is important to recognize signs of memory problems in family and friends, it is also important to use tact when approaching the individual. A crowded family dinner isn't the time or place to bring up symptoms you may have noticed.
For more information on Alzheimer's disease and memory disorders, contact the University of Kentucky Sanders-Brown Center on Aging at UKy.Edu/COA or (859) 323-5550.
Dr. Greg Jicha is the McCowan Endowed Chair in Alzheimer's Disease at the University of Kentucky Sanders-Brown Center on Aging.This is an endnote here an dhdjbfv jhbdvf djfbvjd vhbdfjv jdbvf jdfjbvh jvfjkdbf

Read more here:


I would just like to wish all of my dear friends a very Happy Christmas and hope you all enjoy this Christmas period

Losing my old blog was hard to accept as it was my own fault as I was trying to do something which is normally easy on a bad day, but since setting up this new blog, things seem to have turned the corner and I have met many new friends around the world.

Thank You for joining me and I hope more people will join me in the next year


Sunday, 23 December 2012

Foget me not stickers for hospitals

Forget-me-not stickers idea to help boost hospital’s care of dementia sufferers and their families

Dawn Parkes, project leader, and Danielle Woods, dementia project manager, with the memories tree at BRI Dawn Parkes, project leader, and Danielle Woods, dementia project manager, with the memories tree at BRI
A ‘sticker’ scheme to give high-quality care to dementia patients is being introduced across Bradford Teaching Hospitals.
A forget-me-knot flower sticker put in patients case notes and above their beds will mean patients with the condition are easily identified.
Head of nursing for medicine Dawn Parkes, said the scheme will help make Bradford Teaching Hospitals a centre of excellence for dementia.
“The forget-me-knot scheme is another example of our drive to improve our continuing care, treatment and support for this vulnerable patient group,” she said.
“We hope it will also reassure their families and carers that we are doing everything we can to ease the burden of this terrible disease and the upset that hospital stays might cause for their loved ones.”
To celebrate the start of the scheme, a Christmas tree where people can leave memories and thoughts has been placed in the main entrance of the Bradford Royal Infirmary.
Dementia project manager, Dani Woods, said: “We have been asking patients, visitors, relatives and staff to write the names of loved ones that they wish to remember this Christmas, or a statement around the positive care they or relatives have received, on a name-tag to hang on our Christmas tree.
Another initiative being used to help dementia patients settle into the BRI’s elderly care wards are special memory boxes above the beds of wards 23 and 29 which helps improve staff’s ability to interact with patients. The memory boxes contain items such as old photographs from all eras, local history books, skipping ropes, spinning tops, wooden pegs, seaside postcards or anything that can help them access their long-term memory as it is often short-term memory that is impaired in dementia.
“Hospitals can be very unsettling places for patients with dementia, so our work centres around helping patients and staff connect through something that is embedded in memories. It also gives relatives the chance to have that kind of interaction with their loved ones too” said Miss Woods.
The Forget-me-knot scheme and the Foundation Trust’s

Charity urges people to keep an eye on elderly during Christmas

As families gather for the festive period, a charity is urging people to
look out for the signs of dementia in elderly relatives.
The Alzheimer's Society said Christmas was often the only time families saw each other all year.
The charity has called for people to look out for symptoms in relatives.
Initial signs of the condition, which is caused by diseases of the brain, may include short-term memory loss that affects every day life, problems with thinking or reasoning, or unexplained anxiety, anger or depression.
It is also advising anyone concerned that they may have dementia to visit their GP to get a proper diagnosis.
Presenter and Alzheimer's Society ambassador Fiona Phillips, whose parents both had dementia, said that if her mother had been diagnosed earlier then she could have handled the situation better.
She said: "I remember one Christmas when my husband and I arrived at Mum and Dad's and found Mum distant and cold.
"There was no food in the house at all and she seemed to have forgotten we were coming.
"We didn't realise then that she was already suffering badly with Alzheimer's.
"It took another while before she received her diagnosis - if only we had gotten it sooner, I would have been able to plan things, instead of doing everything in a big rush.
"It could also have prevented things happening like my mum setting the kitchen on fire.
"When you have an early diagnosis there are things you can do."
An Alzheimer's Society spokeswoman said that one in three people over 65 would develop dementia.
Research by the charity shows that 800,000 people in the UK have a form of dementia, this figure is predicted to soar to one million within a decade.

Friday, 21 December 2012

Positive role for dementia working groups

I do think that it’s time for those with dementia in England, to get together and form a new Living with dementia working group, so that we can inspire others to get up and realise that you can still have an active life after the diagnosis.

There used to be two wonderful working groups in the UK, and both did so much to raise the profile of the illness.

Both the Scottish Dementia Working Group and the Alzheimer's Society's Living with Dementia Working Groups had a really positive role in raising awareness and campaigning in the past.

However these days we are only left with the Scottish Dementia Working Group, and the Living with Dementia Group has disappeared completely, through what many think was purely political purposes.

The reason many people think was because the Alzheimer's Society wanted full control over them, and many within the group thought it was wrong. It also cost a fair bit of money to run, but I do think that this part was not done properly at times, and this let to problems. There were also concerns that people were told what they should and should not say at times, something which took away our freedom to speak from the heart if it conflicted with the Societies views

The Scottish Group is independent of the Scottish Alzheimer's Society, although it retains strong links. This group is funded separately and works well with the Scottish Parliament, in campaigning and working on projects which need government support, and they are well respected around the world.

I have many friends within the Scottish Group and have admired them for a long time as they really get things done, to improve the lives of all with dementia. Like the Living with dementia working group they set out to inspire others with the illness to go out and help others while at the same time proving that you can enjoy life and live well with dementia.

As I was told at an early stage, when I went to the first UK Convention for people with Dementia, there is still a new life after the diagnosis, and with help and support you may well find it.

Since that event I have learnt so much and met so many new friends around the world, and life has taken on a new meaning.

So why can we not have the Working Group back in England. Well I suppose to do this properly it must be funded separately from the Alzheimer's Society and must be allowed to work independently, but that will possibly mean being funded by a large company as the public purse is running out.

But providing that company does not have too much baggage attached to it, I see no reason why this should not get support.

We are at the end of the day trying to get people inspired to campaign, and work for others, and if the Alzheimer's Society does not want this to happen then why not let someone else do it, providing it’s well organised and run.

This has to be done one way or another and with the support of the Joseph Rowntree Trust we may well see something happen as this group is independent of the Society and they want to see things change for those with the illness

However I do feel that the way forward is for charities, to encourage people with dementia to get involved, and feel wanted.

Those with dementia know what its like to live with the illness, as they have it, and other people should not assume that they know all about it. So by inspiring us to get up and help others we are also helping ourselves and all who follow us in the future.

Christmas Holiday

Tomorrow we are heading off to Farnborough in Hampshire to stay at our Daughters for Christmas week.

We have been getting our home ready, so that all being well we can move back again on the 3rd January

Its been a long hard time since the flood in June which badly damaged our home, and its now starting to look wonderful again, although the heavy rainfalls we have had recently, have made us fearful, of it all happening again.

I am now looking forward to spending some time with our wonderful daughter and her husband and the grandchildren, and we hope it will be a happy and enjoyable time.

These children are so nice and caring, and its amazing how much they understand about dementia, although they call it "old timers".
I make a mistake and call someone the wrong name, or get stuck for words, they always say something like, don't worry you have old timers and have an excuse for forgetting things.

There are times what it brings tears to my eyes, as its all genuine, but I try to hide it as much as possible.

So if you don't hear anything over the next week, may I wish you all a very Merry Christmas, and I hope that we all have a better year next year.


More money for reseach

Government Pumps £22m into Dementia Research

Boost for getting promising ways of detecting, treating and even possible cures out of the labs and into the mainstream announced.
[UK / Implementations] - Determined to make the UK a global leader in dementia research, the Coalition has found an extra £22m to help develop possible medical responses to the chronic condition.
Some 21 projects – which cover, in the words of the Department of Health, “all areas of scientific activity relevant to dementia, across the fields of care, cure and cause, including prevention” – have been awarded the extra funding. The money is being doled out by the National Institute of Health Research (NIHR).
Examples of projects covered by the grant include trialling the use of a blood pressure drug called Losartan to complement current treatments for Alzheimer′s. This is in addition to the UK′s first ever trial measuring how much longer people with dementia can live safely and independently in their own homes, if provided with a specialised telecare technology package including motion sensors, GPS trackers, and personal alarms.
Another is a trial to produce a comprehensive toolkit for GPs to make identifying the signs of the disease easier and improve diagnosis rates.
Welcoming the announcement, Alzheimer′s Society Chief Executive Jeremy Hughes pointed out that, “As it stands, there are currently more clinical trials into hay fever than there are into some of the most common forms of dementia.
“Dementia is the greatest health and social care challenge of our time and defeating it needs to be a priority for society,” he added.
Announcing the funding, Health Secretary Jeremy Hunt said, “The UK is home to some of the world′s best dementia researchers and specialist research facilities, and this Government is committed to supporting them.
“To make a real difference to research, Government must respond to the barriers the industry faces. It is vital that we can translate the excellent work happening in our laboratories across the country into treatments that can help people live well with dementia today, whilst ultimately working towards finding a cure.”
Hunt made his remarks while visiting Eli Lilly′s UK dementia research centre.
Government figures suggest 670,000 people in England are currently diagnosed with the dementia, a figure it says is set to double in the next 30 years, creating “one of the biggest challenges faced by the UK in recent times.”
The news complements the publication last month of the Department′s first Progress Report on the Prime Minister′s Challenge on Dementia, which had been launched in March 2012.
Some of the achievements highlighted in that Report included a £50m fund to create specially adapted wards and care home spaces to improve the experience of people with dementia.

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Thursday, 20 December 2012

Many years ago we went to the Submarine museum at Gosport and never gave it a second thought, that this little boy would go on to be a Sub marina with the Royal Navy.

I feel so proud of his achievements from leaving school, and becoming an electrician, only to find that he could not get any work in the North East of England due to the fact that there are so many people doing electrical work when they are not qualified to do the job.

Last year he completed his initial training at Plymouth and then went off to Scotland to finish his Submarine training

I may not see him go up the ladder if he gets promoted, but I can still look back with pride, as he
" like me has done so well" after leaving school".

A very proud moment

Tuesday, 18 December 2012

GPs and Dementia

We hear a lot about GPs supposedly doing more these days yet it is becoming more and more difficult to see a GP when you really need them.

Many are working fewer and fewer hours these days, so just how do you get to see one, and how can the services be improving.

I recently when to see one of ours as I had been struggling with a cough which was making me choke and ended up sleeping in a chair so that I did not disturb my wife.

After a month of this my wife said we had to do something, so we went to see the doctor.
She said that my chest was crackling? but there was not infection. However she put me on antibiotics which did not make any sense at all if there was no infection.

When we left the surgery I asked my wife if she was happy seeing someone who really did not want to be there and she looked rather puzzled.
Then I told her that the GP was doing online shopping while seeing her patients, and this shook her.
I found this sort of thing to be rude and very arrogant, and also showed lack of respect to her patients.

Yes GPs may be busy but so is everyone else, and to be honest when I worked I did over 50 hours a week, sometimes up to 80 as I was an engineer on call.

Yet these doctors are doing less work than the average person and getting twice as much money for it.

I hear that GPs are going to be running the health service in the future, and this I find staggering when this sort of thing goes on in surgeries, and lets be honest it can not be a one off.

I did not have an infection as I still have the cough although its not as bad, but I have heard since that it could be to do with my asthma? not an infection, which may well be caused by the fact that we are in a flat with night storage heaters which seem to dry the air out.

As well as that when we go to our house, the fumes are bad due to the paint, but they are due to finish today, and it would be nice to sit and do things even though we can not move back in till January.

 I confess that it worries me that these GPs are responsible for all patients including those with dementia who cannot fend for themselves. If I had gone to this doctors on a bad day I would never have noticed what they were doing on the computer, but I have to ask if others are doing the same thing as there are always large gaps between one patient leaving and the net going in.

I am dreading these people taking over the health service as some only work two or three days a week and get very well paid for this service.

GPs will be paid £30,000 bonus for cancer, dementia and out-of-hours care


  • NHS to reward surgeries which provide an all-round good service
  • Critics say GPs should not receive extra bonuses just for doing their jobs

Health minister Dr Dan Poulter believes the new targets will improve quality in care
Health minister Dr Dan Poulter believes the new targets will improve quality in care
GPs will be paid thousands of pounds in bonuses for hitting a new raft of NHS targets.
Their practices will be given extra payments worth up to £30,000 a year if they make improvements in cancer, dementia and out-of-hours care.
The NHS wants to reward surgeries which diagnose patients early, improve survival rates and provide an all-round good service. The GPs running the surgery can decide whether to plough the bonuses back into patient care, or pay themselves and their staff.
But critics say GPs are already well paid and should not receive extra bonuses just for doing their jobs. In the past six years, their average salaries have soared by 50 per cent to £110,000 a year, thanks to a controversial contract negotiated under Labour.
It enabled them to stop working evenings and weekends while earning extra cash for meeting targets which were widely considered to be too lenient.
Many family doctors now employ locums to cover out-of-hours work and concerns have been raised about the standard of care.
Roger Goss, of Patient Concern, said: ‘It’s an outrage. GPs do not deserve any more money. They think health is a weekday, nine-to-five business that stops at weekends. Yet our GPs are some of the highest paid in the world.’
And Robert Oxley, of the TaxPayers’ Alliance, said: The last thing taxpayers will want to see is bigger salaries and bonuses for already well-paid GPs without significant improvements to services.’
Details of this latest bonus scheme have been unveiled by the NHS Commissioning Board, a recently formed quango tasked with overseeing GPs.
Family doctors are forming local organisations known as Clinical Commissioning Groups (CCGs) which will replace Primary Care Trusts.
From 2014, they will be measured on new targets including the number of patients dying from cancer, heart disease and lung conditions.
They will also cover the proportion of patients diagnosed promptly with dementia and patient satisfaction with the surgery and out-of-hours care.
The best-performing organisations – or those which make substantial improvements over the course of the year – will be given bonuses, known as ‘quality premiums’.
Each surgery within the CCG will be given £5 for every patient on its books. An average practice has 6,000 patients, equating to a maximum payment of £30,000 a year.
Early diagnosis and better survival rates are to be rewarded as part of the new target scheme
Early diagnosis and better survival rates are to be rewarded as part of the new target scheme
The bonuses will be handed to the CCG, which would then distribute it to the practices.
Organisations who have gone over budget will not get any bonus payments – regardless of how many targets have been met. The first bonus payments will be made in 2014/15.
Health Minister Dr Dan Poulter said: ‘Reviewing the contract will ensure doctors have the right training and rewards from the moment they qualify to when they retire as an experienced consultant.’
Meanwhile, hospital doctors could see their pay soar to up to £160,000 a year as part of government plans to improve performance.
Ministers want to create ‘super-consultants’ who would take on leadership responsibilities and become experts in their field.
Such doctors, known as ‘principal consultants’, would earn up to £120,000 a year with a bonus of up to £40,000.
The Government also wants to scrap the controversial ‘lifetime’ bonuses scheme which sees doctors paid up to £75,000 a year on top of their six-figure salaries.
Thousands receive the payments regardless of whether they still do the extra work that first earned them the money. Ministers want to make them reapply each year.
Yesterday the NHS also announced plans to make doctors work at weekends. But officials are unlikely to be able to force GPs to see patients out-of-hours – they will be able to carry on subcontracting the work to locums.

Monday, 17 December 2012

Bradford singing group gives vocal welcome dementia professor


Happy Memories singers perform in the atrium of Bradford UniversityBuy this photo »Happy Memories singers perform in the atrium of Bradford University
A Bradford-based singing group including people with dementia performed Christmas carols at the University of Bradford.
Members of Happy Memories, which meets every Thursday at St Andrew’s Church Hall in Undercliffe, sang festive songs in the atrium before an inaugural lecture of its newly-appointed honorary professor of dementia care practice Professor Graham Stokes.
The group, which was set up by Jane Dale, sees people with and without dementia perform together to share their love of music and performs regularly.
A spokesman said: “Happy Memories is based on principles of inclusivity.
“In performance it is impossible to tell which members have dementia and which do not and research shows that memory for music, song lyrics, rhythm and beat is often unimpaired even in severe dementia

Dementia patients in Dutch village given 'alternative reality'

 A dementia care home in the Netherlands is experimenting with a new way of treating patients by offering them an "alternative reality".

Hogeway is being compared to the film the Truman Show but could other countries learn lessons from how the Dutch are dealing with the disease?
Director of Innovation and co-founder Yvonne van Amerongen showed Anna Holligan around their virtual village near Amsterdam.

Saturday, 15 December 2012

Where would you want to go if granted the wish of a wonderful holiday?

I heard someone talking about this the other day and it started to make me think about it.

I suppose we always go on holidays where we can do our own thing and see historical parts of countries, as we are not beach and sun dwellers, so if it’s historical I am more than happy.

 I don’t always remember about the holiday afterwards, but I try to take plenty of photographs on the good days to remember the holiday from.

There are many places I would love to visit, but as will all things in dementia, the travel insurance costs us the earth.

I have been to Malta which was nice and friendly as well as relaxing, Majorca was very nice, Egypt was hot and very historical and we went to Singapore with the Alzheimer’s Society for the Alzheimer’s disease International Conference, but found that very hot and airless, although interesting.

My daughter got married in Florida and I enjoyed being over there, but wished we could have gone to somewhere like Canada which seems very interesting as they have the Rockies.    
I also had a long weekend in Northern Ireland with the Alzheimer's Society, and while we were there we learnt a lot about the problems Ireland has struggled with over the years, and this was good as we got it from the people rather than what the press wanted us to know. The people we met there were very warm and friendly. One day we may go back again.

Another place which sounds interesting is Russia, as we were going on a Baltic cruise this summer until the floods in June put an end to that.

Your imagination can run wild with this, but then reality kicks in and you realise that you will never get the chance and you come back to earth with a thump.

But I suppose it is nice to think about these ideas, as it keeps the mind busy if only fantasy.

I extremely lucky to have travelled around the UK giving talks on dementia with the Alzheimer’s Society when I was an Ambassador with them, and saw many places that I had heard of but never been to, so I should not complain.

These days I only travel to local universities to give talks, but I know that they are interested in dementia so it’s all worthwhile.
I would be interested to hear what other people think about this, all views are more than welcome

Pure fantasy I admit, but you have to allow your imagination to think about these places.

I also know that many people, could never afford to travel outside their own countries but perhaps they dream of the same things, it would be interesting to hear from some less well off countries


Travel Insurance for those with Dementia

Last year I got involved with a workshop at a conference, where we talked about travel insurance, and I was amazed at other people’s reactions, to the fact that we always admitted that I had Early Onset Lewy Body dementia when looking for a policy. Its seems that some people never admit to having this illness when planning a holiday abroad as the are penalised with high insurance premiums.

There are many companies who claim to specialise in travel insurance for people with pre existing medical conditions, until you start to look into this. All seems to go well until you mention the word dementia, and then there is a dreadful silence. Usually followed by the words, sorry but I will have to ask my supervisor about this.

I know of many people with medical conditions who like to travel and have a nice holiday, yet like me they are becoming members of the vast chain of people who are victimised by the travel insurance industry, because they have some form of illness. We are damned if we don’t say that we have an illness when applying for travel insurance, and damned if we do claim it when asked.

Many like myself have early onset dementia, and yet like everyone else we are within our rights to enjoy our lives as much as possible, and if that includes having a holiday so be it. Like it or not it is everyone’s right to have a holiday if they can afford it.

It is my own personal view that if company say’s that they will insure someone with dementia, cancer or any other long term illness; they should really mean what they say.

Of cause many companies will insure us for a vastly over rated fee, which in many cases costs more than the cost of the holiday, and we tend to get to the position where you really don’t want to go anywhere and that is very sad. I have been charged £30 for a weekend in North Ireland and £110 for 7 days in Malta simply because of my illness.

All seems to go well until the word dementia is mentioned and then the questions get harder or sometimes sillier.   Many companies simply do not under stand or know what the illness is, and those that have heard think that there is only one form of this illness and that is senile dementia.

I have Lewy Body dementia, which differs from other forms of the illness, but there again each dementia is different, and each person struggles in different ways, yet we are all lumped together, and treated with a total lack of dignity and respect. Some firms simply can not spell the word dementia, or they say they have never heard of it.

When my wife has tried to explain what Lewy Body Dementia is, she is treated as if I am a Martian, but I have to ask why this happens, in this day and age.

I don’t think anyone with dementia would travel long distances on their own, they may in the very early stages, but not after that, as we could become confused and get lost.

Most people who have the early stages of this illness and those who care for them, are safety conscious and cut down the risks, but sadly these insurance companies can not see this. It’s not as if we are going to die suddenly with this illness, and if we are travelling with a spouse I see no reason for hiked up prices. If we were so ill we would not be going anywhere.

So why do so many companies claim that they will insure us when it is obviously untrue.

We have trawled the Internet looking at companies who claim they will cover me, then the premium goes higher and higher, or they say sorry but we simply can not insure you.

I have come to the conclusion that many companies claim that they will insure us, because it’s a quick way to make money at someone else’s expense. This is a way of making money, which knowing full well that those of us who are honest will pay up front, to ensure that we are covered.

Yet there is now a growing band of people around the world, who will not confess to having this illness because they feel as if they are being victimised or stigmatised by travel insurance companies.

I have seen many people while I have been on holiday, and I am sure that a lot of these are travelling without the proper insure, simply because they can not afford it.

I now think that it is time that companies specialising in holidays for the elderly etc, look at this and come up with a travel insurance that is relevant and cost effective.

One year a very high profile company did insure for a year to travel around Europe, and then when it came to renew the policy, the price had more than doubled. When my wife asked why this had happened she was told that it was all down to the computer and not their fault?

While some companies claim to insure people like myself, they do so at a vastly high premium rate, and do so because they simply do not understand that many people are cash strapped, to start with without needing to pay vast sums of money in travel insurance.

So please look into this and do something positive to help those, who have enough problems medically without the stress of trying to find cost effective insurance.

Lets be very honest we are not likely to get involved with dangerous sports or activities, so please remember we are just as entitled to travel as anyone else, so if your company sells insurance for those with medical conditions, makes sure it is what it says it is, and really covers us for travel insurance.


New diagnosis methods

A new hi tech early dementia assessment service that could slash the time it takes for doctors to diagnose Alzheimer’s disease from 18 months to three months is being developed, thanks to underpinning research at Imperial College London.
The assessment service integrates several cognitive tests with computerised examinations of magnetic resonance imaging (MRI) brain scans. It could provide medics with a way of detecting dementia much earlier than is currently possible using conventional technology. At the heart of the assessment service’s software is an algorithm created by Dr Robin Wolz and Professor Daniel Rueckert from the Biomedical Image Analysis Group in the Department of Computing at Imperial.
Brain scans
The new system could slash the time it takes for doctors to diagnose Alzheimer?s disease from 18 months to three months

The researchers say the 15 months of diagnosis time the new system could save are critical to the effectiveness of treating diseases such as Alzheimer’s. This is due to the fact that existing drug treatments are most effective in these diseases’ earliest stages.
Dr Wolz, who received his Ph.D. from Imperial College London in medical image analysis, says:
“The size of the parts of the brain important for memory such as the hippocampus and amygdala steadily decrease as Alzheimer’s progresses. Doctors use this as an indicator of how far Alzheimer’s has progressed in patients. Currently, doctors have to work out what is happening to the structure of the hippocampus using an MR scan. This is a painstaking, costly and time-consuming process, where doctors have to analyse the three-dimensional scan slice by slice, so is only ever done in highly specialized centres. Our automated technology can provide this information to all doctors, seamlessly integrated into current processes, and by adding information and increasing confidence, speed up the diagnosis process. This could lead to quicker treatments for patients to improve their quality of life.”
Dr Wolz’s method, Learning Embeddings for Atlas Propagation (LEAP), removes the need for a doctor to map out the brain structure by hand. LEAP can examine MRI brain scans and measure the volume of specific brain structures like the hippocampus and amygdala rapidly and accurately.
As part of the project, GPs will start testing the memory of patients who potentially have dementia using the memory-testing software. Patients who test abnormally will take a second cognitive test and receive an MRI brain scan. The scans will run through a computer program that uses Dr Wolz’s method to assess signs of brain shrinkage. The results from these two tests will be combined with an assessment of blood vessel damage in the brain and given to the GP who will decide on further treatment.
This project is a collaboration between Cambridge Cognition, a creator of cognitive tests, and the medical imaging company IXICO Ltd., which is an Imperial College London spinout company founded in 2004 by academics from Imperial, University College London and King’s College London.
In early November, the partners were awarded a grant for £2.1 million towards the cost of this £3.3m project from the Government-funded Biomedical Catalyst to establish The Brain Health Centre. The aim of the Centre is to make testing for dementia by the NHS quick, cost-effective and seamlessly integrated into the existing patient pathway and health care structure. It will also enable the team to collect valuable data on dementia, which will be used in the development of the assessment system.
Dr Wolz adds: “It is exciting to be able to contribute to this ongoing project. It is very motivating to see my research applied in such a setting. I think that the project has the potential to revolutionise the diagnosis of dementia in day to day practice.”

Friday, 14 December 2012

Weather changes again

Just to add a bit of flavour to life it has snowed overnight, and that is lying on the ice already on the ground.

The weather forecasters said it would be milder and damp. So what happened to the warmer and wetter weather?

It’s been difficult walking down to our home to wait for builders etc., and I had geared myself up for damp but milder weather over night, now I realise that the weather people are clutching at straws and really don’t have much of a clue about their job.

Years ago the BBC were told to water down the weather forecast so that it was not as depressing for some people, but I have to ask what happened to the old forecasters who could give a 10 day forecast and get it right.

Nobody stands a chance of planning their routine let alone those with dementia who like it or not try to plan ahead so they know what they are supposed to be doing.

Perhaps we should bring common sense back common sense, alongside proper weather forecasts  

Thursday, 13 December 2012

GP contract changes ''will save lives''


         Thousands of patients are set to receive potentially life-saving care thanks to the new government blueprint for changes to the GP contract, the Health Secretary Jeremy Hunt has claimed.

The proposals will change the way GPs are rewarded for the care they offer. Instead of being rewarded for routine office functions like record keeping, GPs will be rewarded for steps which directly support and benefit patients. This includes better control of blood pressure and cholesterol, to prevent heart attacks and stroke and assessing patients at risk from dementia.

Millions of pounds will be switched into improving care for patients and making better use of taxpayers' money, Hunt said. The proposed changes will see £164m pounds taken away from rewarding GPs for bureaucratic tick-box exercises and re-directed into actions which will directly benefit patients.

The changes could mean that around 1.5m more patients will get better care in 2013/14 and this could reach as high as 3.5m by 2014/15. The changes should mean more tests, treatments and medicines for patients with diabetes, hypertension, lung disease, heart failure and arthritis – care that will improve diagnosis, the health of patients and potentially save more lives.

"Getting patients an earlier diagnosis of dementia and supporting those with long-term conditions are my main priorities [and] I want GPs to take the lead in making this happen," Hunt said.

"Standards of care in this country must be world class – and we should continuously strive to improve. This is why the GP contract must change. Our proposals will make sure we support the patients most in need and will help save lives in practices across the country. We believe GPs can and will rise to these new challenges."

However, the British Medical Association (BMA), which has not agreed with the changes or the way they were negotiated, said the government had not considered the impact they would have on GP practices.

Dr Laurence Buckman, chair of the BMA's GP committee, said: "Practices are already under huge workload pressures and we have real fears that these proposed changes will result in an even greater load at the same time as forcing through a reduction in core funding. The government's proposals may sound attractive on the face of it and some of their suggestions are good, however they have not fully considered the overall impact on practices of all these changes being implemented together. This could make it difficult for some practices to maintain the level of care they currently offer, let alone increase their capacity to meet the demands of these new proposals."

He added: "We also remain unconvinced about the basis for some of the proposed changes, which include asking GPs to refer patients to certain education programmes which do not exist everywhere in the UK."

Winter weather and councils

Well the cold weather is doing its worst and the roads are very icy again.

Its seems that each year councils get worse at gritting the roads and footpaths, and this year they have far out past themselves as Durham County Council does do seem bothered about gritting anything which is not their property, or should I say does not have their offices on.

All of their office blocks have been gritted and cleared, yet outside their properties everyone is left to fend for themselves.

This weather and dementia do not mix, as you spend so much time trying to watch where you are going, so its bad enough without slipping and trying to stay on your feet.

I think all councils should start to be dementia friendly, then they will start to respect everyone else instead of looking after only their staff.

Where we are at present due to the floods of June, is on a hill, which is very steep, and the footpaths and roads are treacherous to say the least, so what happened to the days when all footpaths and roads were gritted and made safe for all.

I must admit that I hate this weather and just want to get back home after Christmas before things take a turn for the worst. When it snows life is slightly easier because you can get some grip until it all freezes, but with ice you stand no chance at all.

Last year I slipped on the ice and cracked two ribs, and that is still fresh in my memory

Getting it right for dementia patients

Getting it right for dementia patients


Bridget Fordham, dementia nurse specialist

Much has been made of the poor care the elderly can sometimes experience at the hands of hospitals in the NHS.

Some of the most depressing cases involve dementia patients - as shown in the dossier of "appalling" cases highlighted by the Patients Association a few weeks ago.

Last week a report by monitoring body Dr Foster gave an insight into the difficulties hospitals are facing with overcrowding which makes providing the right care for the frail and elderly more difficult.

But that doesn't mean there aren't places getting it right - as I found out when I visited the world-renowned Guy's and St Thomas's Trust in the heart of London.

The trust has been giving special consideration to the care it provides to dementia patients for some time.

Part of this involves providing specialist dementia training to staff, which has been happening since 2009.

At first it was given to nurses and other key staff such as speech therapists and dieticians, but it has now been rolled out to the entire workforce from doctors to porters.
'Big difference'
Bridget Fordham, the trust's clinical nurse specialist for dementia, told me: "Our staff said that of all the patients they dealt with they were the most unsure about those with dementia.

"They just did not have the confidence or skills to deal with them. Dementia patients can get very agitated. Delirium is a big problem.

"So we started doing some training to help. Staff say it has made a big difference and helped them in the way they care for patients."

But the trust has also sought to make changes to the physical environment to help dementia patients.

In the three elderly care wards at St Thomas's Hospital doors to toilets and washrooms have been colour-coded with bays to give patients visual prompts in finding their way round.

Bathroom door Doors to bathrooms are colour-coded with bays so dementia patients can find their way round more easily

Padded flooring has also been laid to help soften falls, which are more likely among dementia patients.

A number of other measures have been introduced trust-wide.

These include a print of a forget-me-not which is placed above the bed of all dementia patients to alert staff to their condition. Dementia patients are also given blue wristbands to wear.

This has proved particularly useful if patients have wandered away from their wards, as Ms Fordham explains.

"We obviously don't want to lock patients in and people with dementia can go wandering so what this does is tell staff that this patient has dementia and should not be out on their own.

"We have had security staff finding patients and because they have had the dementia training they understand the situation and know how to approach them."

Red trays and beakers are also used to signify which patients need help with nutrition.

Nurses on the elderly care wards believe the aids have been a big help.

Deputy charge nurse Jim Domingo says: "They are really useful. If you are coming back from some time off or when there is agency staff working it just makes sure we know straight away who needs what."

Patients and their carers appreciate these measures too. Christine Nethercott, 64, from nearby Bermondsey, has been a regular visitor to St Thomas's over the past five weeks as her mother, Eleanor, has been recuperating from an infection.

While she has been in, Eleanor has had dementia diagnosed.

"It's really reassuring to know staff will be aware of my mother's condition and looking our for her when I am not here," says Christine.

"I must say the care she has received has been wonderful."


Monday, 10 December 2012

Moments which made me proud

There have been many times when I was made feel very proud of my role in raising awareness in Dementia.

I have met many new friends since starting on the Dementia trail, and it is down to one or two of these dear people who got me started, and made me realise that there is life after the diagnosis.

Trevor Jarvis, Peter Ashley, James McKillop are just a few of those people that I have been very proud to meet,

Chairing the Second UK Convention for People with Dementia at Birmingham, was something that I will never forget.

Two Brookes awards from the Alzheimer's Society
One for Volunteering along with my dear wife.

The second for my work as a Moderator on the Alzheimer's Societies Talking Point

Civic Award

The Civic Award from Durham County Council, where I was awarded a Golden Key, something which takes pride of place in the house.

Meeting people like Andy Williams who in many ways was a giant of a man yet a very warm and gentle giant, who was quiet and listened to what was being said.

My Blog which took off without my really knowing what was going on, and it ended up being read by over 11.600 people in 86 countries. I was also asked if it could be used in Universities to promote a better understanding of the illness. That really made me proud because I started doing blogging as a way to keep my brain active by discussing my problems with dementia, and never really expected it to go anywhere like this.
Sadly I lost that blog one day when I made a mistake on google and ended up deleting it all, however as google would not help me bring it back, I got started setting up a new blog using all of the saved documents.

This made me realise just how bad the brain can get when we are tired, and also made me realise that when I am tired I stay away from the computer or anything where mistakes can happen

Being able to talk to students about Living with Dementia.

Being asked to speak at the launch of the Cross party committee on Dementia in Parliament, and then looking back at the advances this group has made in Dementia.

Its been an enjoyable journey and something I have been very proud to do, as its also helped so many others understand that there is a life with dementia if you are diagnosed early enough.

Dementia lessons

Dementia lessons at Stoke Damerel Community College

Artist's image showing the brain of an elderly man with dementia Students will learn about how dementia affects the brain and how to recognise symptoms


A school in Devon is teaching its pupils about dementia as part of a plan to raise awareness of the condition.

Stoke Damerel Community College in Plymouth is one of only 20 in the UK to become a "dementia-friendly" school.

The condition affects about 700,000 in England and with people living longer, the number could double in 30 years.

Stoke Damerel's project leader Lana Helmore, said students could help encourage early diagnosis by spotting the signs in a older relative.

"Research shows dementia is actually affecting younger people as well nowadays," she told BBC News.

"So if we can educate our students to know the signs, the symptoms and things associated with it, it can spread into the wider community.

Dementia signs

  • Struggling to remember recent events
  • Problems following conversations
  • Forgetting the names of friends or objects
  • Repeating yourself
  • Problems with thinking or reasoning
  • Confusion in familiar places

She said people's quality of life could be extended "by about 15 years" if dementia is diagnosed in its early stages.

"If students are going home and noticing these signs in perhaps a grandparent or somebody they know, they can then maybe encourage them to go along for an early diagnosis," Ms Helmore added.

Lessons about dementia will be incorporated into various subjects at the school, including healthcare, maths, English, music and drama.

In maths, students will try to design "memory joggers" and put them into a maths equation, while in English, life stories will be made from interviews with people with the condition.

Martin Cox, Stoke Damerel's community and partnerships director, said staff at the school were fully behind the initiative.

"Some staff might have parents or partners who've been touched by dementia or Alzheimer's and seen the effects of these first hand and that's why they're very keen to bring it into the classroom and share their knowledge with the students," he said.

Sunday, 9 December 2012

Grandparents answering machine


Good morning . . . At present we are not at home but,please Leave your message after you hear the beep. Beeeeeppp ....
If you are one of our children, dial 1 and then select the option from 1 to 5 in order of "arrival" so we know who it is.
If you need us to stay with the children, press 2
If you want to borrow the car, press 3
If you want us to wash your clothes and ironing, press 4
If you want the grandchildren to sleep here tonight, press 5
If you want us to pick up the kids at school, press 6
If you want us to prepare a meal for Sunday or to have it delivered to your home, press 7
If you want to come to eat here, press 8
If you need money, press 9
If you are going to invite us to dinner, or, take us to the theatre, start talking we are listening !!"
(Taken from papers written by a class of 8-year-olds)
Grandparents are a lady and a man who have no little children of their own. They like other peoples'.
A grandfather is a man, & a grandmother is a lady!
Grandparents don't have to do anything except be there when we come to see them… They are so old they shouldn't play hard or run. It is good if they drive us to the shops and give us money.
When they take us for walks, they slow down past things like pretty leaves and caterpillars.
They show us and talk to us about the colours of the flowers and also why we shouldn't step on 'cracks.'
They don't say, 'Hurry up.'
Usually grandmothers are fat but not too fat to tie your shoes.
They wear glasses and funny underwear.
They can take their teeth and gums out.
Grandparents don't have to be smart.
They have to answer questions like 'Why isn't God married?' and 'How come dogs chase cats?'
When they read to us, they don't skip. They don't mind if we ask for the same story over again.
Everybody should try to have a grandmother, especially if you don't have television because they are the only grown ups who like to spend time with us.
They know we should have a snack time before bed time, and they say prayers with us and kiss us even when we've acted bad.
It's funny when they bend over; you hear gas leaks, and they blame their dog.
Send this to other grandparents, almost grandparents or, heck, send it to everyone. It will make their day.

Does the NHS really understand Dementia

Many people struggle with daily problems, while trying to manage the ever changing, things in life like technology which they may or may no...