Finally meeting up with Kate Swaffer

Finally Meeting up with Kate Swaffer

Finally Meeting Kate

Last night my wife Janice and I finally met Kate Swaffer,  and her husband Peter, when they stayed over in Durham City for the evening.
Kate Being a founder member of the Dementia Alliance International, is working to get a louder voice for those in Dementia, and by setting up DAI

Here they give an independent voice, speaking solely for people with dementia, and therefore not tied to any Charity,  which can tell them what they can and cannot do.

This was a lovely evening and I was honoured, and very proud to meet them both on home ground so to speak, and it was an evening I will remember for some time.  

This was a little unnerving for me, because I had sat thinking about this all day, and had never met Kate before. She has such a high profile in Dementia circles these days, that  I did feel slightly out of my depth, as I am taking a back seat these days.

 But Kate is such a down to earth person, so much so, that I do not know what I was nervous about.

Her Husband Peter, who seems to stay in the background, was also amazing to get to know, as he seemed to have a lovely outlook on life and was very funny, even though they had just  flown up from Milan, then driven from London to meet us.

This would have been exhausting for anyone, but they were full of fun, and Kate was quite down to earth, but also very vocal and passionate about dementia.  

But this is  something that "Dementia" needs today, as its not in an ideal position in the World, let alone in the UK at present 

We spoke about the needs of people in England,  Wales, and Northern Ireland, as well as the well know Independent, Scottish Dementia Working Group, which is a model of what was needed in the rest of the UK. 

It brought back many memories of the Alzheimer's Society's Living with Dementia Working Group, which was based in London at the charities head office, until it was disbanded, because it appeared that it had too big a voice, for many in the Alzheimer's Society, at the time. 

The  Living with Dementia Working Group, had hoped to mirror what was happening in Scotland, with the Sottish Dementia Working Group, but this was never going to happen sadly.

I do think that its problem was that the Alzheimer's Society, wanted total control over it, where the Scottish group is independent of the Scottish Alzheimer's Society . 

These days we see and hear far too many people standing up, telling those with the illness what they should and should not be doing, but I do wonder just how many of these people really understand about the illness. 

There is an old saying which comes to mind, that you have seen one person with dementia, therefore you know it all, but just how wrong can this be.  

As an old member of one charity I was staggered, at the total lack of knowledge shown by its staff, so much so it appeared that it was a 9-5 job dealing with dementia, so why bother trying to understand the illness. 

So its up to people like Kate and groups like the DAI, to get a prominent and high profile place in society, away from Charities who may claim to represent the interests of those living with dementia. 

I personally feel that to get anywhere these days, we need groups like DAI, because they are dedicated to helping and supporting those with dementia.  We must also ensure that these groups get heard, where governments around the world are concerned

The only problem they face, is that they have to be self supporting, and therefore need to find their own money to support things like, the daily jobs, such as the website and administration, and then helping support people to go to conferences and workshops etc. 

But in the end, that helps them to remain independent and focused on their main role, to support and give a voice to those living with any form of dementia.

 I can honestly say that after listening to Kate last night, I was amazed at her dedication to her role, and her passion to see that people with dementia get a voice, and are not forced to listen to the views of others, who have little or no real experience of living with Dementia on a daily basis. 

I can only hope  that I get another chance to speak to Kate and Peter again before they go back to Australia, because they inspired me so much last night.    

       

Dementia drivers 'as dangerous as gunmen’

From the daily Telegraph 

Tighter licence checks needed to avoid sufferers taking to the roads when they have become a danger to the public, doctors will be toldi

Allowing dementia sufferers to drive without checks is as dangerous as letting them roam the streets with a shotgun, doctors will be told today.

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DVLA officials, police and GPs are failing adequately to collect and share information, leaving potentially dangerous drivers behind the wheel, the British Medical Association (BMA) conference in Liverpool will hear.

Dr Peter Holden, the GP who tabled the motion, said that under present arrangements only family doctors were in a position to stop dementia sufferers potentially “mowing down” pedestrians and other road users.

He said: “I expect that this would only affect four or five patients per practice where this is an issue, but we wouldn’t accept four or five marauding gunmen.

“There is no one test for dementia, but there are four of five you can make which when you put them together can probably take you in the direction of dementia.”

^{There is no one test for dementia, Dr Holden says (ALAMY)}

Dr Holden called for the DVLA system by which GPs can record patients’ conditions to be updated to accommodate dementia symptoms.

“There needs to be a mechanism for reporting dementia, or if you think it could be dementia. There needs to be an 'anything else we suspect’ question.

“But we would never want to be in the game of it being my say-so that they lose their licence. Medical revocations must be done by the DVLA.”

He said that a lack of public transport had left many dementia sufferers with no alternative but to keep driving.

Police road accident reports did not typically provide an option to record ill health as a factor, he added.

Though no figures are gathered for accidents in which dementia is a factor, Dr Holden estimates there could be several thousand annually.

He said: “Those in the front line know it’s an issue, most of us can say anecdotally in a practice that’s 8,000-10,000, it’s probably five or six cases a year, but would you tolerate five or six gunmen marauding in a year? No you wouldn’t.

“I’ve got a duty to the patient that they don’t put themselves in a position where they mow down a row of kids. Because if I don’t tell them that, who will?

“You know what the rate of increase of dementia is, you only need three or four dementia sufferers out on the road, would you like one out with a shotgun?”

Andrew White, the DVLA’s medical adviser, said: “Licensing rules must ensure we have the right balance between safety and people’s personal mobility.

“We have arrangements with doctors and the police for them to notify us quickly about diagnosed or suspected health problems and we investigate these urgently.” Dementia sufferers must currently notify the DVLA of their diagnosis or face a £1,000 fine. Drivers must also reaffirm their fitness to drive and apply for a new licence every three years after their 70th birthday.

Dr Holden is calling for the BMA’s independent board of science to review the issue.

George McNamara, of the Alzheimer’s Society, said: “Scaremongering is not helpful in making rational decisions in this area. A dementia diagnosis is not in itself a reason to stop driving.”

I personally find this to be an insult, on those living with this illness 

After reading this, I was left feeling a little staggered, because for years Doctors have sat back and left it to that patients, to inform the D.V..LA, rather than doing it themselves

I do wonder if this is another form of stigma, as I have seen a lot of elderly people driving, when they clearly should have stopped.

Yet early onset could involve people well under the age of 65

Are we more dangerous than these teenagers, who have no idea what the speed limit means

Some have never gone through the process that people with early onset dementia go through when they are honest enough to tell the authorities.

This then involves getting permission from your doctors and consultants, and then having to reapply every year to get your licence back

I do feel that here again we are victims of the illness, because when it comes to insurance whether for holiday of driving we have to pay extra, and that's for being honest enough to admit that you have the illness in the first place   

 I have seem fairly elderly people driving a car with a caravan in tow, and some driving motor caravans, even though they were unstable on their legs

Do the doctors tell the authorities when someone has a alcohol or drug problem, I don't think so 

So let us hope that common sense  is used here before things get out of hand

I admit that I thought mandatory retesting should be done every time someone has a serious medical problem or reaches a certain age, but nothing happens

A motor cyclist has to go through a rigorous testing scheme to get a licence to ride a motor bike, yet car driver can pass a test, and then get behind the wheel of a high powered car.

So yes the licence scheme needs to be reviewed but it must be done properly    

Memory is a wonderful thing

Memory is a wonderful thing when it works well, but when you have a neurological  illness it causes all kinds of stress.

There are times when if feels embarrassing as you totally forget things which have just happened, or visits from friends and relatives, yet things from years gone by can sometimes come back easily.

The other day I was struggling to remember when I had seen my grandchildren last, but it was only last week, and that hit me very hard, because it felt like months ago.

I can look back at school days, scouts, hiking climbing etc and early days at work, yet the last few years are difficult to get my head round. 

If I am giving a talk, I need to write it down in advance, and these days it needs to be in larger letters so that I can see and follow it, yet sometimes I forget where I have got to unless I keep my finger in the line I am reading. 

You never appreciate your memory or anything else until it starts to disappear, by which time it's too late.

Alzheimer's breakthrough: New blood test '

Alzheimer's breakthrough: New blood test 'could predict risk up to 10 years before dementia takes hold'

• Single blood protein identified as a warning sign of Alzheimer's disease
• Largest study of its kind measured proteins in 106 pairs of twins
• Found those whose thinking skills diminished the most over 10-year study had lower levels of an individual protein 
• Hopes for new blood test which could be 'Holy Grail' of dementia research

A simple blood test could be developed to predict Alzheimer’s disease up to a decade before symptoms appear, scientists claim.

A breakthrough by British researchers has identified a single blood protein which acts as a warning flag for mild cognitive impairment - a disorder that is often the precursor to dementia.

In the largest study of its kind, the researchers measured more than 1,100 proteins in the blood of 106 pairs of twins.

Tracking the 212 healthy adults over ten years, they found that those whose thinking skills diminished the most had lower levels of an individual protein.

A breakthrough by British scientists has identified a single blood protein, which acts as a warning sign for mild cognitive impairment - a condition that is often a precursor to dementia. It raises hopes for a new blood test to predict risk up to 10 years before symptoms set in

The research is still at an early stage, but scientists hope that it might be developed into a test which flags up those who are at risk of developing dementia.

There are currently no treatments available proven to prevent Alzheimer’s disease - but doctors hope that identifying those most at risk could speed the search for new drugs that could delay or even prevent the devastating brain disease.

Flagging those at risk would give patients and their families more time to prepare, they hope..

The protein - called MAPKAPK5 - was, on average, lower in individuals whose cognitive ability declined over a ten-year period.

But by using identical twins - who share 100 per cent of their genes - the scientists showed that the association between the protein and cognition was independent of age and genetics.

We’re very optimistic that our research has the potential to benefit the lives of those who don’t currently have symptoms of Alzheimer’s, but are at risk of developing the disease

Dr Claire Steves, King’s College London

Experts have been trying for years to create a blood test for Alzheimer’s - often referred to as the ‘Holy Grail’ of dementia research.

Currently patients are only diagnosed with the disease when they start to lose their memory - and thousands are thought to be living without a diagnosis.

Brain scans have been shown to display visible signs of the disease before the onset of symptoms - but they are expensive.

Study author Dr Steven Kiddle, of King’s College London, said: ‘Although we are still searching for an effective treatment for Alzheimer’s disease, what we do know is that prevention of the disease is likely to be more effective than trying to reverse it.

‘The next step will be to replicate our finding in an independent study, and to confirm whether or not it is specific for Alzheimer’s disease, as this could lead to the development of a reliable blood test which would help clinicians identify suitable people for prevention trials.’

Dr Claire Steves, senior lecturer in twin research at King’s College London, added: ‘We’re very optimistic that our research has the potential to benefit the lives of those who don’t currently have symptoms of Alzheimer’s, but are at risk of developing the disease.’ 

There are currently no treatments available proven to prevent Alzheimer’s disease - but doctors hope that identifying those most at risk could speed the search for new drugs that could delay or prevent the disease

Charities last night welcomed the findings, which were funded by the Medical Research Council and published in the journal Translational Psychiatry.

Dr Eric Karran, of Alzheimer’s Research UK, said: ‘Searching for reliable markers of disease in the blood is a tricky task, as protein levels can be influenced by so many factors that differ between individuals.

‘Twin studies present a unique insight into the biology of complex diseases like Alzheimer’s, as they control for age and most genetic effects.

‘This study associated blood levels of protein called MAPKAPK5 with cognitive decline over a ten year period, but it will be necessary to investigate more about a possible mechanism linking this protein to changes in memory and thinking.

‘Accurate and early diagnosis of Alzheimer’s will be essential for the development of new treatments, allowing clinical trials to take place involving the right people at the right time, when those treatments are most likely to be effective.’

Research and eyesight problems in neurological illnesses

Many thousands of people are living with Neurological illnesses these days and many of these people struggle with daily eyesight problems, which it seems is a knock on effect of these illnesses.

But this is only the start of the problem, because it seems that there has been very little research into this problem.

This leaves many people out on a limb, because many opticians simply do not understand this problem, and try to find another fix for the problem.

But this can cause extra problems as I found out to my horror. 

I struggle at times with blurred and double vision,and even though I was referred to an eye hospital, the problem was not sorted out. 

I ended up with a prism in my glasses, but only in one side. This caused so many bad headaches, that I stopped wearing them.

It felt as if one eye was straining to look through a jam jar bottom, and after a while I simply gave up.

Every time I went to the hospital I saw a different person with different ideas, so there was no way that this could be sorted out properly.

I later found out that it was the brain causing the problems and not the eyes.

It's the brain failing to pick up the correct signals from the eyes, or its getting the information all wrong.

So why is it that opticians say they know all about dementia etc, but do not recognise the problems caused by the brain, 

The problem is that many eye problems are intermittent, so as far as these people are concerned, if it's not there in the day of your appointment, your problem does not exist, or its your imagination playing tricks 

How many people like me have these same problems, or have problems judging distances or traffic speed.

 People also miss a door way and walk into the door or frame because of these signals being picked up properly

I have walked off the pavement at times because I misjudged the kerb, 

 So to me we need to have more research into this complex problem, because the brain is a very complex part of the body

But to do this research properly the research people need to involve those with a neurological illness and not simply ignore  the fact that we know what our problems are.

So let us hope that before long, someone gets some research projects going looking into our problems 

Memory problems and old photographs

It has been said on many occasions that it's good to show people with memory problems, old photographs taken when they were younger.

But I have heard other people argue the opposite, 

The reason being that the photographs could trigger old happy memories, which could cause the person to be fixated with that period, and may well then forget what is happening in reality.

I know that when so one shows me an old photograph, I try to remember who is there, and wonder  what happened to them, if they are people I have not seen for a long time

But could this cause extra problems for those with bad memory problems or dementia, and could it confuse these people even more. Could they then go on to think that all of these people are still alive, even though they could have died many years ago.

They could also cause upset, because these photographs may trigger an unhappy experience, which no one else knows about. 

I know from personal experience that old photographs can cause the imagination to go into overdrive, trying to remember who was there, where they lived, their ages, their families etc.

So is this a good idea or a bad one, I suppose it all depends on the individuals, because we are all so very different. 

Survival in Frontotemporal Dementia Found To Be Increased in People With More Demanding Jobs

Survival in Frontotemporal Dementia Found To Be Increased in People With More Demanding Jobs

MAY 22ND, 2015  DANIELA SEMEDO, PHD ALZHEIMER'S NEWS, NEWS 0 COMMENTS

    

Findings from a recent study published in the journal Neurology revealed that individuals with more skilled jobs may live longer after developing frontotemporal dementia in comparison with individuals with less skilled jobs.

Frontotemporal dementia is a condition that mainly affects individuals aged under 65 years and causes personality or behavior changes and language problems.

“This study suggests that having a higher occupational level protects the brain from some of the effects of this disease, allowing people to live longer after developing the disease,” said study author Lauren Massimo, PhD, CRNP, of the University of Pennsylvania in Philadelphia, Pennsylvania State University in State College and a member of the American Academy of Neurology.

Results from this study add evidence to the “cognitive reserve” theory concerning the fact that more educated people with more intellectual activity have a buffering protection against the condition.

“People with frontotemporal dementia typically live six to 10 years after the symptoms emerge, but little has been known about what factors contribute to this range,” Massimo said in the news release.

The research team reviewed clinical records from autopsy of a total of 83 patients who had a frontotemporal dementia or Alzheimer’s disease diagnosis, and also used data about the patients’ occupations. Then the researchers categorized peoples’ jobs according with the U.S. Census classes, with jobs such as factory workers and service workers in the lowest level; jobs such as tradesworkers and sales people in the next level; and professional and technical workers, such as lawyers and engineers, in the highest level.

They then examined the initiation of symptoms, and survival was defined as from the time symptoms began until death.

Results revealed that patients with frontotemporal dementia had an average seven years of survival time. The researchers found that those individuals with more skills jobs had longer survival in comparison to those with less skilled jobs. Individuals who were more skilled had an average survival of 116 months, in comparison with those while people with less skilled jobs who had an average of 72 months of survival, indicating that people with more skilled jobs may live up to three years longer.

The number of years of education did not affect the survival time in either disease, and the level of occupation was not related with longer survival in patients with Alzheimer’s disease.

Dementia should not just be thought of just an “older person’s problem

Dementia should not just be thought of just an “older person’s problem”, says CPFT’s Carolyn Fuller

According to the Alzheimer's Society there are 850,000 people in the UK who are living with dementia, of which about 7,000 are in Cambridgeshire – and all the predictions say that those numbers show no signs of declining. 

However some people may be surprised to know that dementia is not an illness that just "affects older people" indeed there are now over 40,000 people under the age of 65 in the UK who have been diagnosed with the condition.

My current role as a specialist mental health nurse is specifically to support people aged under 65 who have been diagnosed with a progressive dementia.

Recognising someone has dementia, particularly in younger people, is often not straight forward. It can start with a multitude of different changes such as altered behaviour, speech and language difficulties, changes in mood or motivation levels, balance and coordination difficulties, even before any memory issues arise.

Frequently, problems are first recognised at the effected person's place of work. People who previously had been high functioning may become disorganised, start to miss meetings or appointments, and fail to manage their work load. It is felt they do not "seem themselves" but it is hard to pinpoint exactly what has changed.

In retrospect, family and friends frequently say they can go back several years to when they first noticed changes occurring once a diagnosis has been made.

There's no doubt that being told you have a form of dementia can be distressing, but I also speak to people who are relieved they finally have a diagnosis.

Dementia is a life-limiting and challenging illness but my colleagues and my colleagues and I try to focus on the positives encouraging people to continue to live their lives while also supporting them to make plans for the future.

Very much part of our role is to encourage people diagnosed with dementia and their family members to arrange lasting power of attorney, not just for a person's financial affairs but also for health and welfare decisions.

We also help with application for statutory benefits, support or companionship at home while another family member is working, and enjoyable activities to keep people occupied.

This is in addition to monitoring the effected person's presentation, their response to any prescribed medication and other changes that may be causing concern.

Help is available, and if you are concerned about a relative or a friend – regardless of their age - please support them to visit their GP.

Carolyn Fuller is a specialist mental health nurse for Cambridgeshire and Peterborough NHS Foundation Trust's Young People with Dementia Team.

Confused

I confess that I am very confused at present, because I no longer know who to believe as far as medical professionals are concerned.

My new  dementia consultant said that I did not have Lewy Body Dementia, but have Mild a Cognitive Impairment, because I did not deteriorate fast enough. 

Another consultant who I am seeing for my balance and Parkinson type symptoms, said he thought I did have a slow burning type of LBD, and has arranged for a personal second opinion, something the first doctor refused to do.

But it appears that a letter dated from 2009 has appeared and stated that I had an MRI scan which showed up problems in the Fronto Temporal area of the brain, and said something abut TIA which I now understand is a mini stroke etc, 

However this letter was ignored by the hospital consultants at the time, even though it stated that I should be referred  back to see a neurologist. 

Now it's all come to light again, and I am wondering where I am going with this nightmare, as I no longer know who to trust any more.

Although we had a copy of this letter at home, no one explained it, or took it any further, and this is starting to make me angry and annoyed at the NHS.

I can only hope that someone comes along and gets this all sorted out, so that we can move on. 

No wonder people are losing faith in the NHS when I look at this mess.