North East dementia report set to become blueprint for national policy

 Taken from the Newcastle Journal Yesterday

North East dementia report set to become blueprint for national policy

 

An in-depth study into dementia care in the North East is set to become a blueprint for future government policy

North East dementia report set to become blueprint for national policy

An in-depth study into dementia care in the North East will become a blueprint for future Government policy after the Prime Minister urged an increase in funding for research and treatment into the disease.


The most comprehensive report into dementia care in the region to date has been published by the Northern Rock Foundation and coincides with the end of a five-year national dementia strategy from central Government.


The study, which has been produced with the North East Dementia Alliance, looks set to provide a template to inform regional as well as national policy in the provision of care and services for people with dementia.


It reveals that there are 34,000 people in the North East with some form of dementia; a figure that is anticipated to double to 51,000 by 2030.


The prevalence of dementia in the North East is higher than the national rate of 569 people per 100,000, with Durham and Northumberland home to the largest number of sufferers.


While the report’s author Debbie Smith found the region scored above the national average in diagnosing the condition, she recommended more be done to raise public awareness of the condition.
“As a nation we’re living longer and we are seeing an increased number of dementia cases,” she said. “More research, improving the diagnosis rate and better care and support is vital. Just as important are the changes we need to make as a society to tackle stigma and increase understanding.


“We have world class dementia research in the region and it is important that this benefits those who need it.


“The report also illustrates how complex health and social care can be for people to navigate and so it is critical that we have a joined-up approach to commissioning and providing the best possible services and support for people with dementia and their families to have the best possible quality of life.”
Among the report’s other findings was the need for further work to support people with dementia to live in their own homes and for research currently being undertaken in the region to be translated into practice by dementia groups and clinicians.


Penny Wilkinson, chief executive at Northern Rock Foundation, said: “Over the years the foundation has played a vital role in funding in-depth research on a variety of issues and this has been crucial in ensuring that the right decisions are made for the right reasons by the right people.


“Dementia is not only a health issue, it is a social one and that’s why the report and the Government’s pledge to secure investment for research are not just timely, they are vital.”


Alzheimer’s Society regional operations manager Hazel Cuthbertson, who is based in Scotswood, Newcastle, said: “This report clearly demonstrates that genuine progress is being made in terms of diagnosis rates which is to be warmly welcomed because people who are living with dementia have a right to know they have the condition.


“This is encouraging because it shows we are moving in the right direction in terms of making our communities here in the North East places where people with dementia can live well but more needs to be done to ensure that their voices are heard and that dementia awareness is raised among people of all ages so we get things right in the future.”

Its time to reclaim our Health Service

We are hearing stories on a daily basis about the National Health Service being in a mess and being close to failing, yet this can be corrected if a little thought was put into it, and politicians worked together in a Cross Party Group, instead of one side changing the rules each time they come to power.

The only way to resolve these issues is for all parties to work together for the benefit of the people of this country, instead of allowing commercial and Foreign companies to take control.

There are far too many private companies getting involved with our health service, with one view, and that is to make as much money as they can at our expense. This government is not doing anything to stop this, possibly because they may well have financial links, and could be making money already at our expense.

This is the National Health Service and not a private business


There are far too many private jobs being done on the health service now, and its obvious that the service can no longer cope, so changes need to be brought in before its too late.
 

There are also far too many people abusing the system these days and this needs to stop. This includes people coming into the country for free treatment, when they should be paying too and this needs to be looked.

But when we look these days we are always seeing stories of ladies going in for breast implants etc which  are not important, people getting nose jobs done which are only to make someone look better, but let's be honest about this, if it's not needed as the result of an accident etc, it should be paid for privately.


It's not the first time managers have allowed these things to go through yet, people wanting treatment for cancer etc, are told to buy their own medication because the health service cannot afford it.

If this happened in a private business these managers would be sacked, ans so they should

By the same token every week we hear of people getting drunk, needing an ambulance and hospital treatment. Surely they should be given the bill because this is self inflicted, these people are just abusing a system which is overloaded, and many become abusive to hospital staff.


What happened to the days when people accepted their bodies and got on with life. I could understand them wanting to change if they had birth defects, but changing because they don't like the size of their breasts or nose etc, is wrong and should not be subsidised by the public

Millions of pounds is wasted on these drunks every week and it's very wrong, we should go back to the old days when drunks were put in a police cell for the night, and sometimes got charged with being drunk. These people soon stopped getting drunk because they knew full well what would happen

However one of the major faults these days is that the health service is run by management which is too top heavy, so we should go back to the days when the service was run by qualified health service staff, ie doctors and matrons etc all run with a board who were accountable to the patients.


These days if a hospital is in the news for the wrong reason, guess who is never mentioned, the one person who is responsible for running the place the "Chief Executive", yet they are paid £150-000 plus and get golden handshakes when they leave, or are forced to leave because they have failed to run the hospital properly


Having worked in the health service many years ago when the boards with matrons and doctors ran a hospitals,  I was horrified when Chief Executives were brought in because I said things would get worse, and here we are.
  

We should go back to these old ways of running this service, where everyone in the health service was accountable from the cleaners up to the board and no golden hand shakes were given out for failure. If you failed you got the sack.

It's now time to change the health service and bring back to old principals, where there were very few infections because hospitals were spotlessly clean, and everyone had high standards. What is more there was no government red tape, because it was and is not needed if everyone does their job properly in the first place.

But before we can do that we need to change government attitudes towards our national health service, to stop interference, money wasting and wholesale privatisation.
 
I may have dementia but I can see this is heading for total disaster and it has to be stopped now before its all sold off and we end up paying for basic treatment in the future 

Bring back any memories?

Someone asked the other day, 'What was your favourite 'fast food' when you were growing up?' 'We didn't have fast food when I was growing up,' I informed him. 'All the food was slow.'  'C'mon, seriously.. Where did you eat?' 'It was a place called 'home,'' I explained. 'Mum cooked every day and when Dad got home from work, we sat down together at the dining room table, and if I didn't like what she put on my plate, I was allowed to sit there until I did like it.' By this time, the lad was laughing so hard I was afraid he was going to suffer serious internal damage, so I didn't tell him the part about how I had to have permission to leave the table. But here are some other things I would have told him about my childhood if I'd figured his system could have handled it: Some parents NEVER owned their own house, wore jeans, set foot on a golf course, travelled out of the country or had a credit card. My parents never drove me to school. I had a bicycle that weighed probably 50 pounds, and only had one speed, (slow). We didn't have a television in our house until I was 10. It was, of course, black and white, and the station went off the air at 10 pm, after playing the national anthem and epilogue; it came back on the air at about 6 a.m. And there was usually a locally produced news and farm show on, featuring local people... I never had a telephone in my room. The only phone was on a party line. Before you could dial, you had to listen and make sure some people you didn't know weren't already using the line. Pizzas were not delivered to our home... but milk was.  All newspapers were delivered by boys and all boys delivered newspapers -- My brother delivered a newspaper, seven days a week.  He had to get up at 6AM every morning.       Film stars kissed with their mouths shut. At least, they did in the films. There were no movie ratings because all movies were responsibly produced for everyone to enjoy viewing, without profanity or violence or almost anything offensive. If you grew up in a generation before there was fast food, you may want to share some of these memories with your children or grandchildren. Just don't blame me if they bust a gut laughing. Growing up isn't what it used to be, is it? MEMORIES from a friend: My Dad is cleaning out my grandmother's house (she died in December) and he brought me an old Royal Crown Cola bottle.   In the bottle top was a stopper with a bunch of holes in it...    I knew immediately what it was, but my daughter had no idea.   She thought they had tried to make it a salt shaker or something.   I knew it as the bottle that sat on the end of the ironing board to 'sprinkle' clothes with because we didn't have steam irons.   Man, I am old.  How many do you remember? Headlight dip-switches on the floor of the car. Ignition switches on the dashboard. Trouser leg clips for bicycles without chain guards. Soldering irons you heated on a gas burner. Using hand signals for cars without turn indicators. Older Than Dirt Quiz: Count all the ones that you remember, not the ones you were told about. Ratings at the bottom. 1. Sweet cigarettes 2. Coffee shops with juke boxes 3. Home milk delivery in glass bottles 4. Party lines on the telephone   5. Newsreels before the movie 6. TV test patterns that came on at night after the last show and were there until TV shows started again in the morning.. (There were only 2 channels [if you were fortunate]) 7.  Peashooters 8.. 33 rpm records 9. 45 RPM records 10.78 RPM records 11. Hi-fi's 12. Metal ice trays with levers 13. Blue flashbulb 14. Cork popguns 15. Wash tub wringers 16. Spud guns 17. Making your own bow and arrows 18. Going out to play and going home at 'meal time'    If you remembered 0-3 = you're still young If you remembered 3-6 = You are getting older If you remembered 7-11 = Don't tell your age If you remembered 12-15 = You're positively ancient! I must be 'positively ancient' but those memories are some of the best parts of my life.  Don't forget to pass this along!! Especially to all your really OLD friends.... I just did!!!!!!!!!  (PS. I used a large type face so you could read it easily)

Carers and the life they struggle with

When we get any illness whether it is dementia, cancer or something else which turns out to be a long term illness, we are buried by the diagnosis and what is going to happen, not always thinking of what may be coming in the future.

Some people refuse to accept any diagnosis and leave others to pick the pieces up at a later date.

Like many I spend time trying to keep my head above water, keeping active while trying to keep control over my life, something which does not always come naturally, but I feel that I have to try, not just for myself but also for my wife and family.

If you are lucky you may be blessed with having plenty of support and good quality services around you. You may even have had good quality support from the diagnosis onwards, but these days that all depends on where you live.

But there are few local places where our loved ones can go for support, simply because this is patchy, as like it or not everyone with these illness is so different to anyone else, so support for one carer may not help someone else.

Caring is a voluntary role with little training, it's a case of feeling your own way as you go, and coping with problems as they come. It sounds easy in principal, but I know that could never do it, but then my brain is not so good anymore these days, so how do these people cope with a role that they never expected to do.

To the governments these carers are a very good way to save the country lots of money, because like it or not, these wonderful people do save the UK hundreds of millions of pounds each year.

But the sad thing is that no matter what any government says, I personally feel that they have little or no respect for any carer, if they did they would make sure that carers were given the support they badly need, financially etc, from professionals. But these days there are very few professionals in the community who know about these illness and truly care about their work genuinely.

So perhaps now it's time for a change, to ensure that all carers, who like it or not are our 24 hour back up and support, get support themselves and get it from the government services at no extra cost to ourselves.

This rest should also cover a weekends rest when needed, because it cannot be easy looking after someone 24 hours a day 7 days a week, while ignoring your own needs.

These people pick us up when things don't work the way they should and support us through the worst periods, yet like it or not this puts a great deal of pressure and added stress on them

These illnesses are not self inflicted yet we are penalised because we need support, this in turn puts extra pressure on our loved ones and carers who have to work their way through government legislation and red tape.

I do think many governments think that if we don't understand where to look we cannot claim the support we may need.

This illness is cruel, but it must be so hard for our carers to watch this illness take away our lives, and our dignity.

God bless all carers as without them we would all be lost.

Dementia in war torn Countries

At this time my thoughts are with all those in war torn countries especially those who have dementia no matter which type it is.

Life with this illness is stressful at times without living in countries which are being torn apart by, by struggles of one kind or another.

Services for most people will be cut, or restricted, but I guess that when it comes to people living with this illness their services if any at all will be none existent.  

Its not just the services which can cause problems , but stressful situations like riots, or any kind of aggression can make life miserable.

I guess that any person with dementia 's rights will be none existent in many cases, simply because many countries hide their cases of dementia or keep it with in the family, so that the services cannot get to them and give the support they desperately need to get on with their lives.

So at this time let us all think of these people at this time, and hope that things get sorted out for all concerned

Changes dementia brings

When you are living a fast and energetic life as I was I never expected something like this illness to come and pull the rug from beneath my feet.


Before this illness started I was a University College Engineer, spending most of my time dealing with breakdowns of the electrical systems and mechanical plant. It was a busy life working all hours and being on call 24 hours a day for whatever life threw at me.

I was never bothered about working at heights, and for some reason I do not understand, I enjoyed it.

Since then my son who is also an Electrical Engineer, has told me on numerous occasions, I would spend time working on live electrical systems something which has now been banned for obvious reasons, but it was my job and I just got on with it.

My boss always said that when the chips were down, I stepped up a gear and thrived on stressful situations.

These days I cannot remember much about my job, and cannot be relied on to fit a 13 amp plug top safely. This has come as quite a shock as I once rewired our college chapel, something I was thrilled to do, so to forget so much of my job has been hard to accept.

Heights are something I can no longer cope with, and on odd days standing at the top of an empty staircase fills me with total fear. If we are out anywhere my wife, she has to go downstairs in front of me, and I follow her closely.


At home on my own I come down stairs hanging on to the handrail and the opposite wall never looking down at any stage.

 I used to have very good eyesight but now this has gone, and at times struggle with either blurred or double vision, something which has brought in extra hazards along with my balance which is getting much worse

The eyesight problems it seems are related to the Brain it seems, as the brain is not detecting what my eyes are seeing on occasions.


To make things even more interesting my hearing is also going from bad to acute at times. 

However this is one of the things about this illness, which destroys everything in its path as it progresses.

A very interesting article in the Guardian newspaper today

Detecting dementia: the first steps towards dignity

While we are a long way off a cure for dementia, new techniques might help us in the drive to identify it earlier, explains Tania Browne

   

    

PET scans of the brain of a normal patient (left) versus an Alzheimer's disease patient. The scan on the right shows reduction of both function and blood flow in both sides of the brain, a feature often seen in Alzheimer's. Photograph: PR

As a teenager, I lost my grandfather. But he wasn't dead. He still had his favourite music, he still loved to walk in the woods and name the flowers and plants, and he loved his soap operas. He was alive, but gone. A dignified man, a former aircraft engineer and oil company salesman, reduced to the status of a bewildered toddler lost in a shopping centre. When he died, our family felt an odd mix of relief, then guilt at the relief. The man we loved had left his body years before the body gave out.
This was 30 years ago. But while a cure is still far away, two new techniques may at least be able to forewarn us of dementia, and allow us to plan treatment for ourselves or loved ones before any outward symptoms are apparent.
According to Alzheimer's Research UK, my experience is currently shared by 24m relatives and close friends of the 800 000 diagnosed dementia sufferers in the UK. In December last year, a G8 summit was told by Alzheimer's Disease International that the worldwide figure was 44m and set to treble by 2050, as the life expectancy of people in middle and lower income countries soars – precisely the countries who have either depleted or non-existent healthcare systems. Dementia is a serious time bomb.
“Dementia” covers about 100 conditions, all resulting from large scale brain cell death. People often think that when they're diagnosed they're in the early stages. Yet cell death can be occurring for 10-15 years or more before any outward symptoms occur, and by the time they're diagnosed many dementia patients have already lost one fifth of their memory cells. Dementia affects language, your judgement and your general sense of who and where you are, among other things. The most common form of dementia is Alzheimer's, accounting for about two thirds of cases, but it's currently impossible to detect what form of dementia someone has while they're alive. The behaviour of all dementia patients is much the same, and we can only narrow it down to specific kinds by examining the brain after death.
Anyone interested in population health will tell you that no disease has a single cause. Epidemiologists work with many risk factors – factors linked with the likelihood of getting a disease – in the genetic, behaviour and environmental realms. Generally health conditions occur as a result of all three in various proportions, but in the case of dementia nobody knows. It's like having a recipe where the three main ingredients are given, but nobody has told you how much of each, what methods to use, and that each oven is completely unique.
This also makes developing treatments hard. The last drug, Memantine, was approved in 2003. Two more recent drugs have failed to show a significant result in clinical trials. There is hope that one of them, Solanezumab, may help delay onset in mild cases of dementia, but much research still needs to be done.
Although we don't know what causes dementia we find similar patterns in the brains of sufferers, and two proteins seem particularly significant. Proteins are made of long chains of amino acids, each of which needs to be in exactly the right place so the protein can fold up into a complex, particular shape – a bit like genetic origami. It's their unique shapes, and the fact that they can only attach to very specific receptor sites in the body, that make these proteins the key to so many essential body functions. So if something goes wrong, the genetic message mutates over time and a chain doesn't fold up the way it should... well, it's rather like folding up your beautiful origami swan and realising the instructions have told you to make three wings – except with genes you can't change or ignore the instructions.
In dementia patients, two proteins in particular are always found to have mutated and “folded wrongly”. One, called tau, is found all over the central nervous system where it has a role in stabilising microtubules, but it seems to be “tangled” in dementia patients. In September 2013 scientists at the National Institute of Radiological Sciences in Japan devised a chemical which could “bind” to tau and then be detected in the brain using a PET scan, and it's hoped this may also show effects on tau in future clinical trials.
But PET scans are still expensive and complicated, and the cheapest and simplest testing may be in searching for the second important protein, beta amyloid. This protein has several roles in the body, but where it forms part of the brain fluid, it can fold wrongly, tangle and cause a layer of “plaque” to build up. It's thought that the protein mutation may also bind with insulin receptors and prevent glucose from being properly absorbed in the brain, reducing function even further.
But it's been found that because it plays multiple roles, “clumps” of beta amyloid in the brain are mirrored by “clumps” elsewhere, specifically the lens and retina of the eye where it can be detected through bio-markers which bond with it. Two separate studies, from the US and Australia, were presented at the Alzheimer's Association Conference in Copenhagen last week, which showed that levels of beta amyloid in the eyes mirrored those in the brain. The results are preliminary and the tests have not yet been done on enough people to be sure, but in this early stage it looks promising.
So just as your regular eye test can provide early warning signs of glaucoma, it's possible that in future your optician may be able to refer you for further tests for signs of dementia. And the earlier we can detect dementia, the earlier treatment interventions we can make to plan treatment and to slow the progress of the disease. It may not be the “cure” for dementia, but it may well give us the first step to providing patients with maximum independence and dignity for the longest time.

Nice but tiring day

My wife and I took two of our grandchildren to Portsmouth historic dockyard today, as a way of saying thank you for doing so well at school. We could not take the youngest as he was still at school and did not finish until tonight.

We went around the Mary Rose museum which was amazing as we have followed this since this ship was raised from the bottom of the river Solent in the 1990s and to see this again was lovely. We had not

 Been there since our daughter was around 8 years of age, now we took her own children. 

We also went round the HMS Victory which was a little difficult due to the height and spaces on board and the fact that I stumbled on two occasions but I really enjoyed it all. 

We finished off with a boat ride round the harbour and navy yards before heading off for an ice cream and then got the train back home.

It was a lovely day but I was very tired in the end 

Hospital visit today

I went to see a specialist at the movement clinic today where he looked at my tremor and walking issues.

It seems that the tremor is not related to parkinsons, which is good, it sounds as if all my problems are related to my Lewy body dementia.

I am being refered to see someone about my hip and knee which are very sore, and the fact that I seem to be dragging my foot, which causes me to stumble occassionally.

It could well be that the muscles have weakened in one leg, but I gather that could be neurological.

I said that I don't want to go much further as I am frightened of hospitals these days.

Depression in dementia

Like many people, when I was struggling at the start of this illness, I was told it was just stress first then that I was just depressed?

After ten weeks off work and getting so bored, and being followed by our dog everywhere I went, I said I was going back to work, whether the doctor liked it or not.

I knew there was more to this than depression, but this doctor did not accept it.

This idiot wanted me on anti depressants something I refused to take as I did not need them, and this was backed up by my wife, who was a dispenser in the chemists. 

 I and my wife told her that I was not depressed, and we demanded a second opinion from someone higher up, like a hospital consultant. This did not go down too well, but we then started to get answers after a few months of tests etc.

I have met may people over the years who were in the same boat, who like me were later diagnosed as having dementia of one sort or another, so why did these doctors not look for the cause of the depression if we indeed, had it in the first place. 

Is depression the answer to all doctors these days, a quick fix.

I know some people who were put in mental institutions and were treated with electric shocks etc, only to find out later that they had dementia, but there were no apologies for this serious error.

Yes there is depression in dementia, and to be very honest who would not be depressed in one way or another, when they are losing control over their lives, at work, with hobbies along with other things. 

Like many I got to the stage where I refused to accept that I felt depressed when things did not work the way they had for years, because I was convinced the consultant would try to change things, as many consultants refused to accept that depression was and is part of dementia.

This proves that diagnosis has a long way to go before people with this illness are treated properly.

We all know that there are different types of depession, but are doctors lumping all types together simply because they do not know, or is it an easy answer to all.

But there are far too many people on anti depressants these days, when they should not be on them, then, they cannot get off them.

Let us hope that in the future doctors get better training in both dementia and depression, so they fully understand our problems, and look into the cause of the so called depression before going too deep into treatments that may well not be needed, nor will they solve our problem. 

I was extremely lucky to get a brilliant consultant in the North East who knew about Lewy body dementia, and told me to keep myself active and busy, so that I never got to the stage where I would get depressed at losing control, and then giving up altogether. 

In her words try something one day, if that fails try on a second day and a third.

 If that fails give up altogether and do something else, do not try to hang on to things you can no longer do. 

Life is too short, go out enjoy each day as it comes and try something new if you are up to it.

Her kind words have kept me going, yes I get depressed when things don't work, but then I pick myself up and try to move on. 

I know that when I lose control of my computer, I may well have problems as this is my life, but I am trying to be as positive as I can, and hope that never ever happens while I can fight it.

4 out of 10 people with dementia struggle with depression

Taken from the Daily Mail online

Four in ten dementia carers suffer depression: Experts say 'profound effect' condition has on family members is too often being forgotten 

• Two-thirds of people with dementia live at home, equating to 670,000 carers in Britain

Many of those will be elderly and already struggling with health problems

• 
  
• 
  
• 
  
• 
  

+2

Improving support should not only boost their mental health but also cut the odds of their relative being taken into a nursing home or hospital because they are unable to cope.

Rebecca Wood, the chief executive of the Alzheimer’s Research UK charity, said: ‘Dementia doesn’t only affect those who are diagnosed with the condition: its effects are felt far and wide, not least for individuals and families who are caring for their loved ones.’

The hidden toll of dementia was revealed by researchers from University College London who crunched together the results of studies from around the world.

This showed some 40 per cent of those who look after a family member with dementia to be clinically depressed or suffer from anxiety at any one time.

With two-thirds of people with dementia living at home and 670,000 carers in Britain, this equates to almost 270,000 men and women.

More...

• Now Care Minister backs the right to die bill: As Lords prepare to vote on assisted dying, Norman Lamb says he has changed his mind and would support reforms
• Baby boom will see number of  school children in England soar by 1 million over next decade

Many others are likely to have symptoms, although they won’t be severe enough for a clinical diagnosis.

Millions more are touched by dementia, without taking on care responsibilities. 

In the UK, some 23 million people – roughly a third of the population – have a close friend or relative with dementia.

UCL researcher Professor Gill Livingston said the care of a relative with dementia can be particularly taxing because of the length of the illness and its nature.

Patients often don’t realise they are ill and so resist help. Paranoia can lead to the lashing out and agitation can prevent them and their family from sleeping.

Physical help with nursing and chores is available but, surprisingly, doesn’t seem to cut the carer’s odds of mental health problems.

And while carers are supposed to be able to see a clinical psychologist, there are not enough to go round – and until now there has not been a proper treatment programme.

However, an inexpensive and easy-to-teach course devised at UCL could hold the solution. 

Professor Livingston and colleagues put 173 carers through the eight-hour course and compared their progress to another 90 or so who went about their lives as usual.

+2

The course included advice on how to cope with their relative’s behaviour, how to talk to them and to doctors and how to make time for themselves.

This could be as simple as working out how to schedule in a peaceful cup of coffee each day.

Carers were encouraged to work out which parts of the START, or STrAtegies for RelaTives, programme worked for them and encouraged to continue practising them.

After two years, those who did the short course were seven times less likely to be depressed than the others, the Alzheimer’s Association International Conference in Copenhagen heard.

Quality of life increased and the programme was cost-effective. This is because the money spent on it was cancelled out by lower care home and hospital costs for loved ones.

Dr Livingston now has money from the Alzheimer’s Society to train more programme leaders and hopes they will be put to work across Britain.

Using recent graduates as programme leaders will get round the shortage of specialist psychologists.

Dr Doug Brown, of the Alzheimer’s Society, said: ‘If results like these were found with a new drug, it would be hailed a breakthrough.

‘This programme gives us an effective way to support carers and reduce depression and anxiety, which will have the added benefit of improving life for those that they care for.

‘It is great to see research focusing on improving the well-being of dementia carers whilst other scientists search for treatments and a cure.

‘Too often people forget the profound effect dementia has on loved ones caring for someone with dementia and surrounding friends and family.’ 

Myths about dementia

IThere are many myths in dementia, some of which are down to total lack of education and understanding of the illness, but this is not just caused by the general public, but many working in the front line services, Governments and leading charities are just as bad.

Sadly until this is all stopped, the stigms and myths will carry on regardless.

Alzheimers is contagious?

This could be because it's called Alzheimer's Disease so people automatically think that it's contagious.

People with this illness are unable to get involved with any meeting conference or project

This is the most patronising thing I have ever heard, simply because these people are looking at the illness and not the person in front of them.

People with Alzheimers and a Dementia, don't always speak at events but their actions speak volumns, a shake of the head or a nod in agreement. A thumbs up, smile etc all act as part of this persons vocabulary, if people cannot take this on board then they should never ever be employed by a dementia charity, or work in social services.

Dementia is an age related or is a natural part of ageing

So what about the thousands of people under the age of 65. This myth is kept going by all of the picture we see these days at dementia conferences etc which are of old people.

Yes there are many people over 65, but we are now seeing and hearing of more and more people under the age of 65 these days so we must take this on board and move on.

People are being diagnosed at an earlier age these days, yet we never hear much about these cases unless you have access to the internet.

However the internet websites are not always up to date so some of the information is either out of date or in some cases wrong

Providing the correct services for people with dementia

Dementia is a horrible illness which affects not only those who have the illness, but also our families and friends if we are lucky enough to have any.

When we are diagnosed we are encouraged to stay as active as we can, but that us not as easy as it looks.

Many people enjoy an active life and many enjoy hobbies that are not easy to carry on with.

I lost many hobbies because they were considered to be too dangerous to carry on with.

Like many people with this illness, I would love to try new hobbies such as painting, but when you struggle you your memory, it's not as easy as it looks, because you need to remember how to mix the colours in art, and this is something which stumps me every time.

There are many art classes for our carers, but very few for those with the illness, and I assume this is because people don't think we are capable of painting.

This is just one instance of hobbies we may need help and advise with. So if you know anyone who has this illness, see if you can help them to stay active by enjoying their hobbies and past times.

Training health professionals to understand dementia

Many professions in the health service do not have any idea about Dementia or Nurological illness, and this can cause many problems to those with the illness.

This has been confirmed by many  people who live with the illness, and also struggle with things like eye problems. 

The main problem is that many dementia problems fluctuate, so an eye test one day will have different results to one done the next day, or perhaps an hour or so later.

Many if these problems are neurological, so if as I understand correctly, the brain is not picking up the correct signals from the eyes.

So I have to ask if these eye specialists understand these problems, as many people think they don't

I have blurred and double vision, which it seems is common in many dementia's, yet these specialists simply do not understand it, or may be choose not to listen.

On top of being costly when mistakes are made, it's also quite distressing to those concerned.

As a health problem it should be ingrained into their professional training, because like it or not dementia is a worldwide problem, and it's a problem which is going to get much worse over the years.

This should also be considered in hospitals, as many hospital professionals tend to ignore dementia and think that it's not an illness "if they" cannot see anything. 

So this training must be done in all medical fields, so that there is no excuse for this sort of treatment in the future.

We are now around 5 years into the national dementia strategy, and yet there are still many places which have not moved on, possibly because it was not enforced. 

Blogging and dementia

 

Before I was diagnosed with this illness I had been a University College Engineer and was used to monitoring all of the College boilers and plant on one computer. While doing the other tasks such as reports, budgets,estimating and planning of maintenance on the other. 

Now this was all starting to slide away, and it was a struggle to hang on to working on my computer, but I was determined that I was going to hang on to this for as long as possible

 

After the diagnosis I lost my job, and it was decided that we should move back to the family home in the North East, where we could start again, but that was not as easy as we expected, because with in the three months since my diagnosis Oxford Hospitals had lost my notes, and after waiting for around 6 months, it was decided that I should undergo all of the tests again to confirm the diagnosis

 

When I was finally diagnosed as having early onset Lewy Body Dementia, in Durham, my consultant told me to sit down and write my life story as a way of allowing others like any future grandchildren the chance of learning more about who I was and where I came from, as much of my early life was unknown.

 

During another part of the process which concerned my very graphic nightmares and dreams, I was told to keep a diary, and write down what happened, to see if it bore any relation to normal life

 

After starting my life story I decided to keep an online diary, not really thinking of what I was letting myself in to, because I had lost so much control over the computer since the illness started.

 

So after a while I found this free blog and got on with writing about my life and then my illness, gradually taking in things like the problems with graphic nightmares etc.

 

At this stage I confess to being naïve enough not to think that anyone would be looking at it let alone reading it. But then life with dementia was and is something which is still alien to my life as an engineer, and I don’t always recognise the obvious things in life these days, which can be very annoying and distressing at times.

 

Over a period of around two years I would write the occasional blog and never think about it, until one day when I saw something which I had never noticed before, and that was a button saying “Audience”

 

I looked at that wondering what on earth it could be, and got the shock of my life when the audience was revealed. It was being read around the world by thousands of people,

 

A few weeks later I spotted another button saying comments. At first I thought it was where I could write comments, and ignored it. However for some reason unknown to me I went back later and pressed that button, where I found pages of comments, from people.

 

That nearly stopped me from doing any more as this came as a total shock to the system.

 

When I read some of the comments, I was totally amazed at the fact that my attempt at blogging was in fact helping others to come to terms with their diagnosis, because they had been having problems and had no answers.

 

To be very honest I found this very humbling to read some of these comments, because I had never set out to help anyone but myself

However this inspired me and became a little addictive at times as I kept looking at the screen to see who was watching me and where they were, so to speak.

 

I have been questioned at times about my spelling and grammar, but do these people who question us really think that I am doing this for fun.

 

Yes we all make mistakes and it hurts when we don’t see them, but that’s dementia. How many people in this room do e-mails etc. and forget to do a spell check?

 

I have received many e-mails from professionals over the years, and some of the mistakes, made me wonder, if they really cared

 

I used to be very proud of my spelling and grammar, so when things like this start to slide it leaves you wondering whether to give up all together. 

Luckily for me I was advised to ignore these people because they had no idea of the problems I face on a daily basis, and I would advise others to do the same.

I have been contacted by three or four Universities around the world, for permission to use the Blog as a Teaching tool. This I found to be very humbling, as I never set out to do this, but if this is helping to train people doing degrees or other courses in Dementia, then so be it.

 

So why do we blog? and is there a need for it when you have an illness like dementia

 

I think that we must remember that doctors and consultants cannot tell us everything about dementia, because there are so many variations of the illness, so it’s a case of finding your own way where you can, and if possible writing something like a blog which can help others following you.  

 

Recently I have noticed that there are many blogs about dementia, many written by carers and many others written by people living with one or other form the illness.

 

I don’t think I had read one which is negative in any way, but then my idea of what is negative may be different to someone else’s

 

I think we are all trying to prove that we are not going to lie down and surrender to this illness while we can still think and push the keys on the keys board

I confess the key board is hard at times, and when this happens the voice activated software takes over, but that’s a last resort.

 

All of these are vastly different using different ideas and technics.

I have struggled recently due to recurring chest infections which left me feeling that I was losing interest in everything around me. So I have not done a lot over the last year apart from posting articles concerning dementia both national and local, but hopefully this will change soon

 

Two years ago we were badly flooded at home and had to move into a flat for 6 months, a period I don’t remember much about, but it got very difficult to cope with.

During the November I decided to try to tidy up the blog, but somewhere along the line I pressed the wrong button, and deleted the whole blog. I contacted Google at the time to see if they could help but go not helpful answer so I felt stuck.

My wife told me that there were two ways of dealing with this, either let it go, or as everything was written in word before being posted on the blog, I could start all over again. I had got quite a lot out of doing this blog so I started all over again.

 

Since restarting this blog on 11/11/2014 our wedding anniversary, I have now reached over 61-000 readers in 106 countries, something I find to be truly amazing   

 

  Useful information about blogging

• it is a very useful communication tool with others
•  it is my memory bank, of problems I struggled with
•  it helps immensely with managing some of the symptoms of dementia, as writing it down sometimes helps us to understand what is happening
• it helps to keep my brain active and working
•  it helps us to be creative
•  I have met many new and wonderful friends, who share similar problems whether they are living with dementia or are caring for someone with the illness
•  it gives me a focus on the days I feel lost to the symptoms of dementia, and gives me a good reason to try to stay focused
•  I have many friends now from all around the world
•  it has connected me with students and Universities all over the world, along with, centres for dementia degrees and courses
• it has helped define me beyond the diagnosis of dementia
•  It helps occasionally to inspire others with the illness
• it has helped me receive and accept criticism more easily
•  it has sometimes helped to improve my writing
•  it gives me something to do when I am home alone, when my wife is out or busy
•  It helps to educate others
•  it reduces the stigma, discrimination, and isolation
•  and provides me with meaningful and fun-filled engagement

Overall it makes us a better person and helps us to help others in all parts of the world, and language is no barrier thanks to google where we have translations.

Because as we write or problems down we are not only helping ourselves, but also helping many others who do not have the support that we do.

 

There are a few pitfalls of blogging, the biggest for me having been some comments I have had seemed particularly mean, maybe not intended to be hurtful, but hurtful none the less.

But I have learnt to read them and then delete the negative ones, because other people tend to fight back when they see bad comments.

 What I write is my opinion, and at no time do I every declare it to be a ‘fact’. Nor do I ever say that we are all the same, because that would be wrong