Monday, 30 June 2014

Hospital shortlisted

A WEARSIDE dementia care unit has been shortlisted for a Nursing Times Award.

The Roker and Mowbray Dementia Unit, a state of the art 24-bed centre which opened in November last year, is part of Northumberland, Tyne and Wear NHS Foundation Trust’s specialist dementia care campus at Monkwearmouth Hospital, Sunderland.

Project Manager Grahame Ellis said “The Trust aims to provide first class care in first class environments.

“A great deal of thought went into developing the new unit, using international research based evidence on what works for people with dementia.

“I’m therefore delighted that the hard work and dedication of all involved is being recognised”.

The design of the £10million building included a collaboration with the world leading Dementia Services Development Centre at the University of Stirling, as well as the development of bespoke dementia friendly features by the trust’s own design team.
In the six months the unit has been open, staff are reporting fewer falls and a reduction in the number of recorded incidents.

There is also evidence of better sleeping patterns for patients and there has been a reduction in anti-psychotic medication, which bosses say is attributable to the improved environment and the increased social activities which are now available.
Staff sickness and turnover has also been reduced.
The centre has has now been named a finalist in the upcoming Nursing Times Award for the Care of Older People. It comes after recent gold rating from the Dementia Services Development Centre for the design of the unit, the first NHS building in England to achieve the mark.
The next stage in the awards process is to present the project to a panel of judges in London on September 8. The winners will then be announced at the Nursing Times Awards Ceremony on October 29 at the capital’s Grosvenor House Hotel

Wonderful Inspiring lady

Taken from the Mail online News Press



Woman astonishes doctors across the world after surviving for 20 YEARS with dementia ... while writing two books, delivering lectures and even finding new love

  • Christine Bryden was diagnosed with Alzheimer's at 46 years of age
  • Doctors told her she would be dead in eight years 
  • She says she's had defied the odds by challenging her brain in new ways 
  •  She hopes her story encourages others to fight back against dementia 

   
Almost 20 years after being diagnosed with Alzheimer's, Christine Bryden has defied all odds and stumped medical professionals by defying the disease and living a normal successful life.
After being diagnosed with early onset dementia at the age of 46 in 1995, the mother-of-three was devastated by her terminal prognosis. She was told she would need full-time care within five years and would be dead before she turned 60.
And yet two decades later, Ms Bryden has reshaped medical thinking about the disease, writing two books, completing a post-graduate diploma and even entering into a new relationship with her partner - all while her brain continues to deteriorate.
Christine Bryden was diagnosed with Alzheimer's at only 46 years of age. She has since then astounded medical professionals and beat all the predictions regarding her health
Christine Bryden was diagnosed with Alzheimer's at only 46 years of age. She has since then astounded medical professionals and beat all the predictions regarding her health
In 1995, she visited a doctor for brain scans after experiencing a great deal of stress and extreme migraines.
The then Australian government scientist was told by two separate doctors to leave her career behind as her scans showed that damage to her brain was well underway and would continue at a creeping rate, as is common with dementia.

DEMENTIA FACTS

  • Dementia is a collection of symptoms caused by disorders, rather than one specific disease
  • It affects thinking, behaviour and the ability to perform everyday tasks
  • It it is more common in people who are over 65 years of age
  • Dementia is the third leading cause of death in Australia 
  • There is no cure 
  • 44 million people worldwide suffer from the illness
Source: Alzheimer's Australia
They gave her the bleak diagnosis that she would be completely incapacitated and be required to move into a nursing home within five years - and then die three years later.
'It was mind blogging. I was totally horrified, I couldn't believe it could happen to anybody so young,' Ms Bryden told the Daily Mail Australia.
'And then I just felt total horror as to what would face my girls and me in the future - my youngest was only nine and still in primary school.
'What was terrifying was the way I would; die without knowing anything - and that's a really terrible fear to have. 
'Somehow its difficult to be brave when you face losing the ability to be brave. But slowly im trying to adapt and its hard work trying to keep going, keep talking and keep thinking.'
Despite her emotional turmoil, Ms Bryden refused to simply let the disease take over her mind.
She released a book, 'Who Will I Be When I Die', which explores the isolation and the feeling of identity loss experienced by dementia sufferers.
Three years after her diagnosis, she even fell in love and married Paul Bryden, who continues to support and encourage her to this day.
It was on their first date that Ms Bryden said she told Paul of her diagnosis, but since then 'he hasn't looked back, so we're on this journey together,' she said.
'I call him my enabler, he enables me to keep functioning, rather than a carer which implies doing things for me.'
Three years after her diagnosis, she fell in love and married Paul Bryden (right), who continues to support and encourage her to this day
Three years after her diagnosis, she fell in love and married Paul Bryden (right), who continues to support and encourage her to this day
She has also released two books, including Who Will I Be When I Die, which explores the isolation and the feeling of identity loss experienced by dementia sufferers
She has also released two books, including Who Will I Be When I Die, which explores the isolation and the feeling of identity loss experienced by dementia sufferers
Ms Bryden has astonished medical professionals across the world, defying even the most positive odds, and has become an active advocate for people suffering from dementia by speaking about her personal experience within the wider social issue.
'There was no support back then. When I rang up association they asked me "who are you looking after?" and when I said it was me they said "we don't have support for you, only for the carer",' Ms Bryden said.
'I had a nine-year-old girl - how do you explain what you have and what's going to happen?
'She went to show and tell the next day and said "my mum has a hole in her head" because that's what it looks like in the brain scan.
'All of that has changed now! I was so upset and passionate to change [the lack of support] at the time.'
Despite noting that positive changes since her own diagnosis, Ms Bryden believes there is still more to be done in order to help dementia sufferers lead a normal life in society.
'I'm really passionate about trying to make it better for other people being diagnosed today,' she said.
'I want people to feel brave and I want society to accept us as disabled people amongst us who deserve dignity and respect, not to be shunned and laughed at.
'There are so many jokes out there about old timers disease and "I'm losing my marbles". It's so hurtful. people don't realise that it's like saying "I've got a touch of cancer today". It's a terminal illness that people joke about.' 
Ms Bryden has  become an active advocate for people suffering from dementia across the world by speaking about her personal experience with the wider social issue
Ms Bryden has become an active advocate for people suffering from dementia across the world by speaking about her personal experience with the wider social issue
Christine was appointed Queensland Alzheimers Australia ambassador by Ita Buttrose (left). She was also the first person with dementia to address the international conference of Alzheimer's Disease International
Christine was appointed Queensland Alzheimers Australia ambassador by Ita Buttrose (left). She was also the first person with dementia to address the international conference of Alzheimer's Disease International
The dementia advocate attributes survival to the immense support she receives from her family, as well as her consistent effort to stimulate her brain and use it in new ways.
However, despite Ms Bryden's remarkable journey, the effects of the disease continue to creep in and make their impact.
'I have no idea why I've lasted this long except that I've been trying very hard. But it doesn't matter how hard some people try, it might not necessarily help them because their brain is disappearing too fast. 
'My brain is disappearing slowly and therefore giving me a chance to keep going.
'As my brains disappears - and it's definitely disappearing, bit and bits disappear everyday - I have to use different parts and I have to keep trying. I'm rewiring my brain all the time.
'I was functioning at high level to begin with – I am a very determined individual and I do get very exhausted. It would be very easy to just have a quieter life, but I think by putting all this effort in, it's been worth it. Not everyone is as lucky.'
Famous in Japan: Ms Bryden's second book, Dancing With Dementia, was written in response to requests for updates on her life and was commissioned by a Japanese publisher
Famous in Japan: Ms Bryden's second book, Dancing With Dementia, was written in response to requests for updates on her life and was commissioned by a Japanese publisher
She has done many interviews and documentarys in the last 20 years, and has given talks all over the world including in UK, France, Israel, South Africa, Brazil, Dominican Republic, Taiwan, South Korea and Turkey
She has done many interviews and documentarys in the last 20 years, and has given talks all over the world including in UK, France, Israel, South Africa, Brazil, Dominican Republic, Taiwan, South Korea and Turkey
Ms Bryden wants to continue inspiring hope within people who are suffering because of the disease, whether patient or carer. 
Dementia affects over 44 million people worldwide and more than 300,000 people across Australia, with numbers only set to grow as the population ages, according to Alzheimer's Australia. There is still much to be learned about the disease which presents itself in a range of symptoms that affect a person's thinking, behaviour and the ability to perform everyday tasks.
'I just want people to have hope for a future living a new life with dementia – and not to give up and fall into despair,' she said.
'I hope that as a result of all this effort, that people with dementia and their family are encouraged and can overcome that terrible fear and the stigma.'
See her full story on Australian Story at 8pm tonight on ABC1.
If you have any queries or require any help in relation to dementia, please call the Alzheimer's Australia help line on 1800 100 500.

Sunday, 29 June 2014

Involving people with dementia

This article got stuck in the system and I have managed to get it out


It is an old thought that people with dementia cannot get involved with anything.

However these days we are seeing people being diagnosed at an early age, an age where they can do so much, if they are allowed to do so, but this means that society in General has to make this happen.

Many of us are capable of being involved in many projects, and we are doing our best to change attitudes, change ideas and thoughts about dementia, so that things are done to suit us and not the professionals who think they know what we want.

So many of us are involved in reading publications, and wording them so that they are easily understood by joe public as well as those who have this illness. There is nothing worse than a publication, written for general release which Is full of medical jargon.

Some are involved with meetings setting up new methods of helping others who have the illness.

One or two of us are involved in giving presentations about living with the illness, and these are well accepted by establishment these days.

 It has often been said that people take more notice when a person with the illness stands up and speaks from the heart, because they are indeed the professionals in dementia as they are living with it.

Many people with dementia benefit from being involved, as it gives them a positive feeling, a feeling that they are wanted and thus also helps others to realise that we can do things, whether discussing projects, speaking or advising others about what would work best.

I have been involved in many projects, however it has been noticeable that one or two have you there so that they can simply tick a box, implying that they involved a person with dementia, whether they listen to what was said did not matter to them. 

It mattered to me and found this to be disgusting, especially if it was a government department who should have known better, but all of this depends of whether the chair of the meeting is dementia friendly or not.

We have a saying, Nothing about us without us. Meaning do not talk about us without involving us, as we know better than you as we are living through the illness.

If you are really interested in learning more about the illness, or setting up a project about dementia, then why not ask someone with the illness to come along and get involved. At least we know what we are capable of, and what will suite others better

But please remember that no two people with dementia are the same. We are all individuals on individual journeys with individual problems and symptoms, so no two people with any form of dementia have the same problems. 



Information at point of diagnosis


This article got lost in the system but I managed to move it today

Diagnosis of dementia is hit and miss around the UK, which is very sad, as I would expect the health service to provide the same information everywhere.

Having had two diagnosis of Lewy body dementia, I was staggered at the diffences, in methods and information given after the diagnosis.

After the first horrific diagnosis, we were simply given the name of the illness, and I was then to
to return 9 months later to be seen again. 

I then had to move as I lost my job, but when I went to see my new consultant, they found that the original hospital had lost my notes, so I has to be re diagnosed to check that I did have this illness.

However the second diagnosis was done in a more caring way, and at the end I had an interview with the consultant, where we were told about possible medications, along with the information about the Lewy body dementia. 

We were given information sheets about these, and were asked if we had any questions. 

We were then asked to read this information at home and return in two weeks, to ask any questions and to start the medication if I agreed to try it. 

To be honest I really did not think that there was an option, as I wanted to live happily for a bit longer if possible.
This would also allow me to get my life into order, so that my wife was not left to sort things out on her own 

At this visit we were also told of any problems that the medication could throw up, but i still wanted to give it a go as I had nothing to lose

I was then told to set myself a routine, which would get me through the day, as take some pressure off my wife.

I was also told to write my life story, as most of my life was untold. This would help keep my brain active, and in the end would allow my future grand children to learn about my life, who I was, where i came from etc

We were also told to visit our local branch of the Alzheimer's Society where we would get extra support and help.

As I was having major problems with nightmares at nights, sometimes very graphic, I was asked if I would write them down, to see if the clinical psychologist could look at them.

This I could do as they were so graphic that I could still talk about them the next day

I could not find a diary big enough so I started doing this in a blog on line, not realising at the time what I was doing.
I though blogs were personal at the time and did not get read anywhere else

It was only about three months later I found out that others were actually reading this, it was a blog going world wide.

This is one problem with thus illness, as we do not always see the obvious.

However around a year later I found that this blog was actually helping other people to come to terms with their illness, and was helping carers understand what their loved ones were going through.

Information should be given at the point of diagnosis, by medical staff, however not all consultants will do this, and I know now that I was extremely lucky to be given the information and support at the time.

But a dementia nurse or support worker could do this, if they are really good, and they will give enough support to make sure that we understand what we are doing.

I must also point out that as this was done at a hospital dealing with dementia, we were also given emergency telephone numbers, if we needed help during the night or weekend. 

We all struggle to ask questions after a diagnosis like this, because if feels horrible when the diagnosis Is given, your brain goes blank. It's later on that the questions come, and by then there is no one to ask as the clinic has probably closed.

There are many chat rooms on the internet, where we can go to ask questions 24 hours a day, but this is only a good tool if we can use the internet and gave a computer. Some places have telephone call centres which can help.

I am hoping that in the future we will see more good quality information at the point of diagnosis, as recommended in the National Dementia Strategy, and this will carry us through a diagnosis that in all honesty no one wants.



Thursday, 26 June 2014

Achieving something positive in dementia

After the diagnosis of one of other form of dementia, many simply give up the will to fight, some refuse to accept the illness, while some get on with a new life.

Yes it's very difficult to accept something like dementia, but if you are diagnosed early enough and are given the right support and help, you can learn to move on and enjoy life for a little bit longer.

Of course it all depends on getting the right help and support, and being encouraged to do many things.

When I was diagnosed my wife and daughter, would not let me dwell on the illness, and it was encouraged to keep active.

Once I realised that it was possible to live a new life with dementia, I never looked back as I started meeting new friends, and doing things that I would never have considered before, like standing up and speaking in public.

Not everyone can or indeed wants to speak in public, but on a good day it's amazing the response you can get.

I have been honoured to be a Dementia Ambassador, I have had civic awards for my work in dementia, have spoken to Government groups, and the list goes on.

I would Encourage those who have the illness to join a local group and meet new friends, do new things and try to really enjoy yourselves while you can.

The world is your oyster, but you must make the first move 

I am in no way trying to blow my own trumpet, but it have been amazed at my achievements over the last few years, and truly amazed at speaking in public, because the thought would have terrified me when I was working.

If by doing all of this I can help others with the illness, then I have achieved more than I really expected.


I have lost many hobbies since the illness kicked in, but I feel that if I can achieve something every day, then it makes me feel so much better.

Never try to look back at what was, but think of what can be if we try

Try to help yourself if you can, because by doing so you will also help and inspire others.

PM encourages more research into dementia

After reading about the Governments Dementia research plans, it prompted me to think about it


Mr Cameron the British Prime Minister wants to encourage research companies to look further into possible cures for dementia.
This to many people with dementia is the holy grail, and we all live in hope that someone will come up with a cure sooner or later.

There are medications on the market which help slow the illness down but nothing that stops or prevents it.#

Many people think that this will never work, as its too costly, and many companies have looked at this over the years, and then gave up because of the failures and the vast cost involved. This research also costs millions of pounds with very little to show at times

As well as all of this we have to consider the fact that if something does come out of this, it may well be squashed by the British Governments own departments, like the National Institute for Clinical Excellence as being too costly, or not worth the money.
This group stopped people getting dementia medication a few years ago, then they reversed their decision.
However, in that time some drug companies said that they would stop working on dementia treatments, something that was understandable but also very sad.

When I look back, these research companies also had similar problems in the 1950-60s with Cancer treatment and cures, however this has moved on, so there is some hope for those of us with dementia.

But when we look at many have said in the past that dementia is not a trendy enough illness to warrant the millions of pounds in research, but without this research, millions of people will have to put up with this horrible illness, which wrecks people lives and families.
Many of us have lost friends and jobs, and this only makes a bad job much worse.

I think we are now seeing changes because many now realise that dementia is not age related, but can be got at any age in life.
Dementia is also not just one but a group of many diseases, which cause problems with the brain. There are also well over 120 variations of dementia, so no two people are the same

We are all individuals with individual problems and symptoms
 
So let us hope that somewhere along the line this research is successful and new treatments are made available, in the future.

We can all be cynical about  whether this is just another ploy by a Government to take the heat off themselves by discussing dementia, but we all need to go with this in the hope something comes out of  it.

It may well be too late for many like myself, but at least those following will stand a better chance.

Many like myself who are on medications which are supposed to slow the illness, have also made lifestyle changes, in an attempt to add extra years. This like trying the Mediterranean diet, or Indian curries etc which are supposed to help stop the illness, but do they work, I don't know, but anything is well worth trying.
  

Government research into Dementia

Prime Minister David Cameron yesterday called for the UK to be more “dementia-friendly” to help sufferers and urged an increase in international funding for research to find a cure.
He announced that the Government is doubling funding for dementia research to £66m, but insisted that other countries needed to step up their efforts to deal with the rising numbers living with the condition.
Yet leading dementia experts in the North East say it is essential that more is done to help highlight the social impact of the condition.
Dr Lynne Corner, a social gerontologist specialising in dementia research, and Director of Engagement at Newcastle University Institute for Ageing, was at the summit where Mr Cameron made his speech.
She said: “It is of course good news that David Cameron has announced such an enormous boost to dementia research funding. Yesterday’s summit would also have been the perfect opportunity to highlight the social impact of dementia as well as the health aspects.
“Dementia is not only a health issue, which is how it is often treated, it’s also a social and societal challenge. One in three people over 65 will die with dementia, and many more will know someone with dementia, whether a loved one, neighbour or co-worker. It impacts many peoples lives in many different ways.
“As well as funding research to understand the causes of dementia and treat dementia, we need more funding for services that help people living with dementia, especially carers. We need to fund projects that help us understand how people with dementia can live happier, more connected lives and how carers can be helped and supported.
“There is already some great work out there, for instance projects using digital technology to help those suffering with dementia increase their engagement in society, which need public recognition, support and funding if we are going to meet this challenge.”
More than 300 health and finance experts listened to the Prime Minister at a summit in London to discuss the important issue, where he warned of a “market failure” on dementia drug research and development.
Last year, the UK used its presidency of the G8 to host an international summit on dementia, which ended with experts setting a global ambition to find a cure by 2025.
Yesterday, delegates came together again for the first in a series of legacy events following the summit and were told by Health Secretary Jeremy Hunt that there is a “desperate need” for more investment in research. The economic and social reasons to find a cure, or disease-modifying therapy, cannot be ignored, Mr Hunt said.
Rob Stewart, North East communications and media officer for the Alzheimer’s Society branch in Newcastle acknowledged that improvements for dementia patients had been made in recent years but more still needed to be done.
He said: “We have seen the huge progress that has been delivered for cancer research because of a sustained boost in funding and now need the same for people with dementia. David Cameron’s announcements mean the UK is leading the fight in dementia research but our global partners will be crucial to fulfilling the promise of the G8.
“Since the Prime Minister launched his dementia challenge in 2012, research funding has been increased and there’s been a huge amount of activity to tackle dementia, leading to the first ever G8 summit dedicated to a condition and a landmark pledge to find a cure or treatment by 2025.
“This has put dementia on the agenda so the condition is beginning to get the attention it deserves alongside other diseases, however there is still a long way to go.”
It is estimated that by 2021 there will be as many as a million people with dementia and costs are set to rocket from the £23bn per year that dementia already costs the economy.
There is no cure for the condition and there have been no new treatments for dementia since 2003 - those available do little to slow the progression of the disease.
Earlier, Alzheimer’s Research UK announced a £100m research campaign and the Medical Research Council said it was undertaking the world’s biggest study into dementia, involving two million people.
Mr Stewart added: “Developing drugs can take decades, cost billions and people with dementia have all too often had their hopes dashed by clinical trials that end in failure. We need to do whatever we can to clear any roadblocks that stand in the way of getting new drugs to the people who need them.
“However, that’s not to say that drug manufacturers should be allowed to cut corners on safety - people need full information about outcomes of trials and possible side effects so they can assess with their doctor whether a medicine would help them or not.”
Grandfather Ken Clasper, 67, of Chester-le-Street, was diagnosed with dementia more than 10 years ago yet continues to live his life to the full.
He said: “This isn’t just one illness; there are more than 120 variations of dementia so there certainly won’t be a cure-all found when I’m alive. The cost of finding a cure for dementia will be astronomical. We need a lot more money to be spent on finding a cure and I really hope that the pharmaceutical industry will follow David Cameron’s lead and plough more resources into research.
“Dementia has been left behind in comparison with cancer when it comes to research and it is high time this is put right but there will be no quick answers.
“The Government’s announcement is very welcome. We’ve got to be in it for the long haul. I’m normally a cynic on bold announcements like this. I really hope I’m proved wrong for the sake of anyone affected by dementia in the future.”
Mr Cameron said the UK will look at how to bring forward specific proposals on drug patent extensions and how to give patients earlier access to new drugs.
He said: “We are renewing our commitment to say by 2025 we want to find a cure to dementia. We should treat this as a disease rather than as some natural part of ageing.
“We need to develop more drugs, we need to get those drugs to patients faster, we need more international collaboration and, crucially, we need more money into dementia research.
“We are doubling, this year, the amount of money the British Government spends on dementia research to £66m but we need other countries to do the same and to work together.”
He added: “Something like £50m a year is being spent on dementia research, rather than the £590m spent on cancer. It is important to see dementia as a disease and one that we need to understand more of so that we can tackle.”
Health Secretary Jeremy Hunt said more must be done to dispel the myth that dementia is an “inevitable” part of ageing.
He said: “The UK Government is doing what we can. Since 2009 we have increased investment in dementia research from £28m to £52m and we are on target to increase research spending to £66m by 2015. But globally we desperately need to see new investment flowing into dementia research.
“We know from detailed analysis done by the London School of Economics that there is an impelling case both for economic and social viewpoints. That research shows that if treatment were available to delay the onset of dementia by just 36 months, it would save us here in the UK £5bn per annum.
“Currently few people understand what it takes to find a treatment and eventually a cure that works and is also safe. We know it is a fiendishly complicated process that is going to take co-ordination, investment, partnerships from across the many sectors and no doubt many failed attempts to get there.
“We need innovation in finance to enable cutting-edge research as well as identifying and removing barriers that are currently stopping us achieving this.”
The new world dementia envoy, Dennis Gillings, warned that if global leaders do not incentivise businesses to invest in research, the ambition to find a cure by 2025 will not be met.
Dr Gillings said: “Dementia is a ticking bomb costing the global economy £350bn and yet progress with research is achingly slow. Research must become more attractive to pharmaceuticals so they will invest and innovate.
“Just as the world came together in the fight against HIV/Aids, we need to free up regulation so that we can test ground-breaking new drugs, and examine whether the period for market exclusivity could be extended. Without this radical change, we won’t make progress in the fight against dementia.”

Ipads and brain games

I have been asked many times how I still keep going, but much of this I think Is down to the fact that I spend so much time each day and sometimes at night doing brain training games on my ipad.

I know that I cannot beat these games, but I keep trying to do it, perhaps because I am stubborn. 

These games are built into these ipads and computers, so that you are not only trying to play the game, but also trying to beat the computer, something we really do not stand a chance at doing, but part of me still wants to at least try to do the impossible.

Some days with my tremor I struggle with the ipad but at least I can use my left hand to play these games etc, something I find impossible to do on my computer, but then I do not use that very much these days, simply because the ipad is much easier to keep control of. I do not have to keep looking down at the keyboard all the time, then forgetting what I am doing. 

I do find that these games are much more interesting then then television as I struggle at times to keep up with what is happening, then loose interest. 

I do think it's very important to remain as active as possible these days, and doing these games does help my brain on the days I am not out doing something else. 

I also find them very handy on long train journeys these days, as I no longer like long journeys any more, so it helps to pass the time.

I do think ipads could play a major part in helping people with dementia remain active, and give them something to do on the days they are feeling low or lonely.

So perhaps there needs to be a push in society to get these things out into the hands of those who could benefit from having them.


Saturday, 21 June 2014

Causes of stigma in dementia

There are many causes of stigma in dementia, but I do wonder whether it is I some way self inflicted. 

I say this because we are used to hearing about Alzheimers Disease, through out the world, and I do wonder if this has fuelled the stigma.

I say this because I have been asked many times, if the illness is contagious, and when I ask why anyone would ever think that, the same answer comes back.

If it's not contagious, why do people call it Alzheimers Disease?

I am starting to think that this has fuelled some of the stigma.

However most of it is caused by pure ignorance through lack of education.

Like Cancer in the 1960s people thought it was a dirty disease, caught by doing something you should never have done.

Yet those of us who have cancer or dementia have done nothing wrong to attract this horrible illness.

Many assume wrongly, that when you get dementia, you are unable to speak, of take a constructive part in life. I have been shouted at because the person thought, that once you get the illness you became  deaf. Why on earth do people think this?

I do think that there needs to be an open campaign, to educate people about dementia, so that they understand what dementia is, and what problems we may have. 

I feel very sorry for those who had dementia over  the past 100 years or so, because many of these were put into mental hospitals, because the authorities thought that they were mad. 

Here again it us a total lack of understanding. But I am sure , that if we work hard enough at this we can remove the myths etc, and then remove the stigma we still see these days.

Many people often say, you don't look as if you have dementia, so what does a person with dementia need to look like. This is a quite common remark and after a while  it gets you.

I have often gone out with my wife, and occassionally when she has stopped to speak to people, she gets asked, how is Ken?

My wife's response is always the same, why not ask him yourself, he can speak and he is stood beside you.
This again becomes quite hurtful after a while, because you feel like a ghost who is only visible to a few people.

Let us all work together and remove this major problem


 


Friday, 20 June 2014

Relaxing weekend

I am enjoying a relaxing weekend at my daughters in Farnborough.

 It's been tiring and I admit that I had confusion a few times, but I think I am over tired as I am not sleeping well and the last two mornings I have been up at 5am, so I guess it's all mounting up.

The children have been lovely although they have also been very tiring at times, but that's what happens when we see each other once every few months. 

As with all visits I have been doing the gardening which is relaxing although it's very hot down here compared to home. 

All in all it's nice to be able to do something to help others.


Wednesday, 18 June 2014

Dementia training

My wife and I have been doing extra dementia work with local branches in the North East, after our branch manger asked if we would help.

We had both done Dementia Friends Training, so we decided to help out as they felt that they needed more training and experience from someone with the illness.

I as amazed at how they treated us, and in many ways it was well respected. So of that staff made life a lot easier with their warm attitude which helped me to enjoy the early mornings.

This has been an amazing experience as there is so much interest by the staff, at getting this right in the community.

Although it gets tiring as it's all early in the morning, I have done it as as it's only once a week.

As well as this their staff did awareness walks between the branches during dementia awareness week and helped raise a lot if money

I can only commend Lloyds bank for doing this, and also commend my dear friend Trevor Javis who got this all started at lloyds bank.




Rough night busy day

It's been a very long rough night, but this morning has been busy, starting with dementia friends training at another branch of Lloyds bank in Bishop Auckland.

I ann now relaxing on an East Coast train heading towards London. 

I am a bit wobbly today and my eyes are not brilliant, but at least I know that it could be worse

It was decided that I needed a rest with my grand children in Farborough, so I am heading off there after London.

I don't really like long journeys these days, but at least it's fairly controlled and quiet in First Class.

Here's hoping for a relaxing weekend.

Tuesday, 17 June 2014

Problems with the blog

I have been experiencing problems with my blog over the last two weeks, and it all stems from when my computer needed repair work.


I did wonder if someone had tried to hack into the blog, but I am not sure


I spent last night trying to sort things out and somehow managed to mix up some of the blogs, so they are no longer in the correct order, or at least the last few are out of order.


I have also had people sending e-mails, telling me that they cannot send messages any more. I am not sure what happened with this but I will try to sort it all out tonight if I am up to it


 

Monday, 16 June 2014

Calming music in dementia

Over the years I have always loved music, but my choice of music has changed quite a lot since my youth.


Back in my teenage years I loved things like the Beatles, Cliff Richards and the Shadows, but also liked Classical music, something my father thought was odd at the time, because as he loved dancing he thought dance music was the best. I don't think he really understood why I liked classical music, and perhaps at that time thought I was a bit odd, however  a few years later he himself started to listen to the same music as he found it relaxing



However a lot of music we listen to during the day, is no good at night when you have any form of neurological illness like dementia.



This is because the rhythm could cause many problems if its too fast or noisy



I find this distressing to think I really enjoy a piece of music during the day, but if I wake up from some distressing graphic dream or nightmare, the same piece of music can actually make things much worse



There are lots of CDs on the market which claim to be relaxing, but many could add to the  problems we already have, either because of the rhythm or other items on the music



The reason I say this is because you can sometimes drift back off to sleep listening to music, but the wrong piece could cause nasty accidents if you are  not careful



I heard one such CD during the day once and realised that it would not work at night, for the following reasons



It had the sounds of the rivers which can be calming and relaxing along with the waves of the sea, something I enjoy during the day.



But at night this could cause problems with a persons waterworks leaving them very embarrassed and upset. I have heard this from others so I am not going to put this one to the test.



But sometimes fast music like violins can cause the brain to go hyper, if you are struggling from the horrors of the night as we call them, so music like this should be left to one side.



These days I like to listen to relaxing classical or Cathedral choir music, as long as its not too heavy, along people like Andy Williams, Perry Como or Phil Coulter, which are  all relaxing in their own way.


The fact that I once met Andy Williams makes this extra special to me.  But these are all set and a relaxing speed and rhythm

I hope that one of these days someone will produce a cd of music for this purpose, because its something that is needed, and could be used in all environments.

 

How feelings change in dementia

When a person gets a diagnosis of dementia their whole world is thrown into chaos, as something's are lost for good, and things like tastes totally change.



We are all brought up with beliefs and guidelines, but in many cases these also disappear as I have found over the last three years.


In life we grow up with many ideas and in some cases strong beliefs, whether religious or not.
I always had a strong belief in my religion until this illness started, then the wheels started to come off.


I think its the way my brain has gone, but that is out of my control, on most days, as things change so much, and that is something that is distressing, whichever way it goes.



However over the years my views on certain subjects have change quite a lot, and my tastes in foods have changed so much

that its hard to accept that its the same person that I was 10 years ago.



But my religion like many things have been pushed to the limit, and I am in the position now where I am not sure what I believe anymore. But I guess like my father its partly because of the way the religious authorities have changed things to suite themselves, the youngsters and have left the elderly and those with neurological illness etc out in the cold.



I used to belong to a very old and large church which dated back to the year 880, and over the years was capable of holding up to 400-500 people, now its lucky if it gets anywhere near to half of that, simply because the clergy have lost touch, with reality and only seem to speak to their favourites.



A few people have said recently that they feel as if they are going the same way because they cannot cope with being treated like idiots. I do think that the Church of England has lost the plot over the last few years, because its now run by academic Bishops, rather than Bishops who came up through the ranks and actually worked in industry earlier, people who knew the real meaning of life with its struggles and hardship, rather than going straight in from University.


When I was younger Bishops were admired, they were tied to any political party and they stood up for the poor and the sick.



Now that has all changed and they all seem to be tied to the Labour party and the sick and poor no longer get thought about. The Odd thing is that originally the Labour Party was set up for the workers on the mines and cotton mills, and the clergy were not invited to join.



We now have a new Arch Bishop of Canterbury who has worked in industry, and he is trying to change things but like many other people I think he is fighting a losing battle, as the Church of England is now classed as a Middle to High Class religion, so no one else seems to matter any more. I guess that's because  a lot of the old industries have gone from this country. No more coal fields, iron works, or cotton mills.



But When I look back my father had the same problems, which at the time I did not understand, when we talked about it, but its becoming clear now, and I am starting to agree with him even though he is no longer with us


 Father had been a very religious man and went to church at least two or three time s every Sunday, and then he had a series of strokes, meaning that he could not attend church. He remembered the days when the clergy would visit the sick at home, but in his case they did not want to know, and classed outside visits as unnecessary, something which made him very upset, and in the end said his religion had gone.



It was hard to listen to father when he talked about his religion and his wishes, at the end, but when I look at it I have gone exactly the same way. What is more I fully understood what he was getting at and I totally agree with him.



I am now sadly getting to the same position, which is sad, but unavoidable. I struggle at church anyway these days as everyone is standing waving their arms around or swaying from side to side, something which makes me feel unstable, so I stopped going to certain services, but now each form of service changes every week, and that's no good when have memory problems and are trying to follow services    



It feels like another chapter of the book is closing through this illness, but I guess that's life.

My faith had kept me going up till now, but as one old Cannon once said you don't need to attend church to be religious, just keep your faith.



I know that many other people with dementia have experienced the same problems in life, so I am not alone with this.


One person actually lost a lot of friends for saying things like this, which to me is very sad because it proves that those who left this person knew nothing at all about this illness.



When I look back over the years, so much has changed, my tastes in food, music, and even politics, so I wonder what is going to be next



Getting the right information at the diagnosis

I know that we are all vastly different, but I do wonder just how many people get the right information and support after the diagnosis of dementia has been given.



I had the benefit of having been diagnosed twice, but on both occasions the support and advice given was totally different.


After the first diagnosis, we just told that I had Lewy a Body Dementia, and then told to go away for 9 months, as I was not ill enough for the medication.


As my wife kindly pointed out, a lady could go away and return with a baby in that time.

I was not given any support or advice at this stage, something which always seemed very odd.

However after losing my job as an engineer, it was decided that we should move back to the family home in the North East of England.


We moved and went to see the new consultant, but found that the original hospital could not find my notes. After 6 months of waiting I was put through the diagnosis again, because my notes were still lost, but this was done in a far better way and more person centred and caring.


After the diagnosis was done, I was given the information about the medication which I would be tried on, and also about the Lewy body dementia, and was then asked to go home with my wife, where we could read it all and return in two weeks to ask any questions that we may have.


We were also told to ring the hospital if we had any questions which were very important. 

 After the two weeks I was given the medication and was told to do one or two things which would help me over the next period,


One was to set myself up a routine, so that life would be easier to control, and would ease the pressure on my wife.


I was also told to write my life story, so that my family and any grand children would learn who I was and where I came from, if the illness progressed at a fast rate.


As I was having graphic nightmares etc, I was also told to keep a diary, explaining what happened, as it would help the clinical psychologists understand more clearly.


This got so bad that I could not find a diary big enough, so I started writing it down on the Internet, and that's how the blog started, all by accident.


I say by accident, because I did not realise that this bog could be read by others. 

We were also told to go to the local branch of the Alzheimer's Society were we would get extra help and support.

The sad thing is that many Alzheimer's Society Branches have now closed, so support of this nature is very hit and miss.

However if you have a local branch it is well worth contacting them to ask questions, and also see if anyone can help and advise you.

Charities can give a lot of positive advice  so please look them up, and see if they can help you.

There are many Internet chat rooms for this illness, but here again, not everyone is able to use the Internet to get this support.

But many people do not get the support and help that I got, and I do think more help needs to be out there for what people call a very traumatic diagnosis.


I also think that face to face support is far better than Internet support, as you can see the person.

This information does not all need to be given on the day of diagnosis but can be given over a few weeks,so that we do not get swamped.


 I do think the information about the medication and illness was welcomed and gave us an idea as to what could happen, although, as I said before we are all vastly different.


All individuals with individual problems symptoms and ways we deal with our problems. 

Having a support group would be ideal, so that we could ask other people with the illness how they coped with odd problems.


Another way would be to have a dementia nurse who could answer questions we have.

But I guess that it's all down to the hospital where this is done.


Writing the blog helped me quite a lot, and through chat rooms I met many new virtual friends, who also gave help and support.

 I have spoken to many people after their diagnosis and their response has been amazing, as they all say the same. Talking to professionals is helpful, but speaking to someone who has the illness, has more of an effect, as they are talking face to face about how they are coping with the illness.


No medical jargon, no big words, just saying it as it is.


Let's hope that things change in the future so we get more support at the point of diagnosis.





Sunday, 15 June 2014

Ipads and dementia

When I was at work I had two computers in my office, one for general work ie reports e mails estimates etc, and another which was linked to all of the boiler rooms in the college and controlled everything, so that I could see what was happening in any boiler room or plant room without actually leaving my chair.




 Then this illness kicked in and I lost control of using a lot of technology, something which terrified me.



I managed to hang on to my computer although found control getting worse as time went by.

I now use as I pad and have been amazed at how life has changed, for me at least.


Everything I want is there within easy access, whether it's my blog, e mails, Facebook, Twitter, and brain training games.


I am in contact with friends without having to think about it too much.


I can use my left hand on the days my right hand has tremors, and it's so much easier to use than a computer, that I look back and wonder how we managed over the years.

As well as that something has reversed in my brain now, so while I have always been right handed, when I am typing on the computer, my left hand has become much faster, than my right, so it causes upset, as all the letters of the words get mixed up. This means that I have to sit on one hand and just type with one hand.


I find doing brain training things can be addictive at times, because it's me and dementia trying to out do the computer, but if it helps then so be it.


When I look at these ipads, I do wonder if there Is anything which cannot be done on them, but I am still learning to use it and still finding new things to try out when I am up to it


When we consider that these include things like alarms which can be used for mediation etc they are indeed a wonderful thing.

Also included is a diary which I also find useful on a daily basis, as everything is there in front of my eyes.


I can recommend anyone who has this illness to try one of these ipads to see if it helps them as much as it helped me.

TBI and Dementia?

TBI and dementia: Link or no link? Published Today Published Today By Yella Hewings-Martin, PhD 10 ...