Quality of Life in Dementia

 

After the diagnosis of dementia many liken myself, are left feeling sad, and are left with nothing but negative feelings, as life as they know it is changing fast, and they have no idea just how they or others will cope with things from then on.

However my second consultant changed all of that within half an hour, as she told me to expect changes, to accept them and move on, as fighting could have the wrong effect.

In her words:- you may struggle to do something one day that you have done for years and may not succeed in doing the project in hand. If it fails, leave it and try again another day.

She said that there was a danger in getting quite depressed at not being able to do things, and therefore I should be careful, and think about it.

These words have kept me going, because I have lost the ability to do many things including hobbies, but I still have a life to live and will continue to do so while I am able.

But to many people who get the diagnosis of dementia, life as we knew it has come to an end, but many are encouraged to get involved with charities such as the Alzheimer’s Society where they can get help and support both for themselves and their carers.

To have a good quality of life we all need the support from others and not, be invited as the token person with dementia as I have heard so many times before

This path can take many routes, but like myself, many get involved In meetings which are helpful to us, and allow us to help others by changing the way those with dementia are treated within society.

But this is littered with problems, as some people that I have come across, resent us giving our ideas as they think we don’t know what we are talking about, or they speak in medical jargon etc., which is very hard to workout what they are getting at and remember.

This is in my view sending out the wrong message and must be changed once and for all.
But it should also be remembered that everyone, with dementia is totally different, and they react in different ways, no one size fits all.

By that I mean that some people can retain information where others find it difficult. Many like myself try to make notes as words don’t always come easily, and sometimes the wrong words come out leading to people thinking we are rude or aggressive, something that annoys me as it proves these people really don’t have a clue about dementia.

As someone said only the other day, not all forms of dementia follow a pattern as laid down in the text books, and many with the same form of dementia are vastly different, so please make allowances for us and give us the time to assess what is happening and answer in our own words.

Don’t make the mistake that many people do, and that is ask a question and then try to answer it for us.
It is my view that those with this illness should push themselves to the limit if they can in the early stages, as it would be very easy to give into this illness.

I must add that I am in no way restricted in what I do, as I still enjoy photography, walking and painting on good days when I can get things in the right prospective although these days are running out slowly, but there are limits to how far I will go before I stop myself, before I get frustrated at my inability to do things that I have done for many years.

As I have said before I use assistive technology in most of my hobbies, as it helps me carry on doing things like photography, and although it gets tiring carrying all the stuff around at times, it stops me thinking of what is around the corner. There are many gadgets to help in this hobby such as tripods and remote control gadgets for the days when my hand shakes, but this does not stop me enjoying life

I agree that not everyone shares my views and I would not expect them to, as we are all different, and have different views, but at least these are mine and they have kept me going.
My quality of life now also takes in a lot of assertive technology, from hearing aids which have enhanced my hearing, to the buddy tracking device and voice activated software on my computer, all of which has enhanced my life, so I am not giving up.

As far as I am concerned I have a good quality of life and would like to hear from other people with dementia and hear their own views on this topic.

I also know that I am extremely lucky to still have the freedom to do what I want at present, but others are not so lucky as me.

 

Very wet outside

Its a very typical British day today wet and horrible, but I suppose it could be a lot worse as there is snow forecast for some parts if the country today.

I am feeling much better today apart from having a very sore hip and knee but that's all down to old age and the weather, so no complaints there, just get on with it.

The  Grandchildren have been wonderful this weekend and I could not have asked for more as I was feeling rough when we got here,  and they seem to sense my predicament,  which is strange considering their ages, but its nice.

The eldest daughter who has Asperger's has been following me around looking after me, and helping me with the washing up after the meals and we are really starting to bond together which is nice.

I do this so I am a way from the noise at times, as I struggle with acute hearing, as does this very young girl, so its a way of bonding and having an enjoyable time away from others who may be noisy.

We went out for a meal yesterday and the two of us were sat on a different table to to everyone else, and had a lovely chat, and we both left feeling happy being together.

I miss the grandchildren as we don't see them very often, but when we do see each other we try to enjoy life, something which is not always possible with my dementia and the Grand daughters Asperger's,  but I do feel that we may be getting somewhere.

Yesterday was a bad day as my tablet computer failed and I had to restore it to get in the internet, but after a few hours It was back to normal again and I was happy, I feel so lost without a computer and internet these days.

Let us hope the rest of the weekend is as happy as what's gone.

Feeling better

After a long month of chest infections I starting to feel slightly better thank goodness.

I have had three sets of antibiotics and steroids, and feel like I may be getting somewhere, although breathing today had been hard, like a belt round the  chest.

Still here's hoping for a better week.




I never realised how much damage a chest infection caused to the memory and brain'

Another bad night

Another very long night, when I could not get comfortable in bed, as I was breathless and very uncomfortable around my chest and back, so I got up and sat in my arm chair.

Last week I was told that I could now have pleurisy, which is odd when they have been telling me that it was a chest infection

 

I did not sleep much in the chair, but was comfortable as I had a pillow behind my back for support. I had my Chest x ray this morning, and now I have to wait another 7-10 days before I get my results back from my doctors....        
   

The x ray department said that I should have been seen well before now, but I guess that’s all down to the National Health Service, who for some reason keeps changing the rules about arranging X rays.                                      
                              

This is my third set of antibiotics and steroids this time round, the fourth in six weeks, so I just want this over with now. I was told that if this does not clear, this time round I would be admitted into hospital, but I know that I am not even considering that option, after the problems I had when I had pneumonia.

 

After that I ended up with a fear of hospitals, because the place was absolutely grim, and the toilets and bathrooms were filthy, so I have no intention of going into another one. As well as that, with my memory problems I get confused in those places, and they will not want me there with my graphic nightmares



I just want to get back to giving presentations about living with dementia, not feeling like a caged tiger, I guess I am just a very bad patient 

Music and dementia

I have loved music from an early age, and still love it today, although my abilities to sing and tastes of music have changed considerably.



I also spent around 10 years in a our Parish church choir as a boy along with my Brother John, and went with them to sing in Durham Cathedral with the Cathedral choir, something that was a thrill at the time. It was hard work but I look back with pride, as I had learnt so much.



In my younger days I loved some popular music and some classical music, something that was classed as odd for my age.



My father thought, I was odd listening to classical music at first and then he got used to it and loved it.


This was the era of the Beetles and many large groups, some of which are still going today.

I never got into things like Frank Sinatra and rock music, as I could never stand it, but now my tastes have changed



I still like classical music, and pop music, but now for some reason I now like listening to Frank Sinatra, Eric Clapton along with Freddie mercury and queen, something as I said I would never have listened to in the past.



Is my brain telling me something, I simply don't know, but I have been told by other people with this illness that they have experienced the same problems.



However today there are many places running events called, Singing for the Brain, but I could never go to these because my singing days are over, or as my dear wife has told me in the past, they are well over.



I struggle to get my voice going, and sing so low it sounds like its coming from my feet, totally flat.

I do however listen to music on my music player, during the bad nights when I have the nightmares and graphic dreams.


I have used this music player when I cannot sleep some nights, only to be woken up by my dear wife, telling me to shut up ,because I have been singing as I was drifting off.

The usual culprit with this is Glen Cambell and Rhinestone Cowboy, why I simply don't know.

I did have a good laugh at this, and now I don't play either Glen Campbell or Jim Reeves when I cannot sleep.



The Grandchildren thought it was hilarious, hearing about me singing in my sleep, but to me it could have been a lot worse.



This music player is a good thing, but that had back fired on a few occasions, when I learnt that some music I love listening to during the day, has the wrong effects during the night, and can actually trigger bad dreams.



This I think is caused by the rhythm and some instruments like String and Violin's. Gast violin's trigger very active and sometimes violent dreams some of which can be very graphic and violent, or at least the are to me.



Only once has my wife come to get hit during the night, and that was when she tried to wake me up,  she actually became part of the bad dream and woke the next morning with a lovely black eye.

I was very upset and did not understand what had happened, until I sat down and thought about the dream, which was violent.



After this I warned carers etc, when I was doing talks about dementia, never to touch someone having on of these horrors of the night as we call them.


Keep well back and speak to us. If you get too close you will become part of the event.



I do think there is a lot to be said where dementia and singing events are said, because music seems to unlock or memories, and in many cases has actually got people moving singing and taking part, even though they may have been silent for a very long time.



Music is generally very calming and relaxing, and to me its a wonderful tool to use, in all illnesses, so we must encourage more events around the country, in the hope that more people get involved.



The only time I can go to religious services these days, is when we are away and attend a Cathedral service where people are restrained, simply because I struggle when people start swaying to the music and singing with their arms in the air, because it makes me feel unstable.






 

http://www.dementiaallianceinternational.org/

If this link does not work, just copy and paste it onto your search engine.

Home

Dementia Alliance International is a non-profit group of people with dementia from the USA, Canada, Australia and other countries that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

Our membership is open to anyone with any type of dementia.

We are a very new group and this site is still very much

 

About Us

The Dementia Alliance International is a collaboration of like-minded individuals that provides a unified voice of strength, advocacy, and support in the fight for individual autonomy for people with dementia.

 

Blogs

Here we showcase a number of blogs written by people with dementia, and other sites and videos supporting people with dementia and their families. If you know of others, please advise DAI via the contact form.

If we could see inside other’s hearts: Life in 4 mins A profound look at life in 4 minutes… a ‘Must watch’!

What is that? (Τι είναι αυτό;) A MUST watch short movie

Richard Taylor, PhD An amazing man living with dementia, and advocate for people with dementia

Kate Swaffer: Creating Life with Words Living with and writing about younger onset dementia

EarlyOnsetAtypicalAlzheimers Writing about YOD by John Sandblom

I CAN I WILL An ‘Ideas Library’ for PWD, their cares, Professionals, Associations and others.

Exploring Dementia

Mission

Dementia Alliance International (DAI) is the first global group, of,by and for people with dementia, advocating for the voice and needs of people with dementia. DAI was established in January 2014 to promote education and awareness about dementia, in order to eradicate stigma and discrimination, and to improve the quality of the lives of people with dementia. The aim is to bring the community composed of those with dementia together as one strong voice to urge the government, private sector, and medical professionals to listen to our concerns and take action to address this urgent global crisis. It is our firm belief that working together, we will identify concrete action for implementation with the international community, and in the process, ensure our human rights are being fully met.

Our Mission is to:

·         Self advocate, and support other people with dementia to do the same

·         Act as a local and national resource by providing support to people with dementia and their families

·         Educate professionals and the community regarding AD and other dementias

·         Provide international support and networking opportunities for people with dementia

·         Promote fundraising for attendance at conferences

“We can live well with dementia.” Global Dementia Charter

 

Childhood Memory's

 
When I look back at my childhood memories, I stop and then look at today's youngsters, who are always bored out if their minds.



 When I was young we had a radio, and later on a small television, but we were never allowed to switch these on. That was a no go area, adults only and anyone else touching these would be in big trouble from our parents.



We had moved from a small coal mining village to a new council estate in the next town, and that was a bit of a culture shock, because it was all people we had never seen before, unlike the village, where most people knew who you were.



We had played on the fells around the village, and by all accounts, it appears that no one ever knew where we were most of the time, but we always arrived back at meal time, even though we did not have little luxuries like wrist watches in those days, and no church clocks chiming.



This area looking back now was in fact a little dangerous as there were a very large bog in the middle of one section, and many things disappeared never to be seen ever again.



After the 2nd world war the army used part of the fells for training on Sunday mornings, and we used to go over to watch these tanks and personnel carriers manoeuvring around the fells. It was recorded one day that a brand new tank got too close to the bog and disappeared, leaving the personnel to clamber along the gun barrel to safety.



When we moved to the new estate we had to start from scratch meeting new friends and finding your way around, something which was slightly alien to the small village.



Here we spent most of our lives outside playing even in the dark, sometimes much to the annoyance of our neighbour's, but we never did anything to hurt anyone or anything, that was a no go area.



Yes we would play football and cricket in the back street, because there were no lights around the recreation field, which made it difficult to see the ball in the dark. These days the same field has lighting and swings a complete contrast. 



So we resorted to using someone’s back gate or a dustbin as a wicket. I know it was noisy at times but we never did anything to cause damage, as we were all terrified of getting into trouble from the neighbours and then our fathers, which had a hidden terror to most of us. Occasionally someone would come out to complain about the noise, but it did not last, we simply moved away to another area, and then went back later.



There were no computers as we see these days, but we made our own fun up, sometimes as we were going, there was no such thing as boredom.



I can even remember going by bus to the swimming baths in the next town, which was a little hard at times especially during the autumn months as it was outside, uncovered and unheated, but good fun, once you got used to the very cold water.



We were not allowed to travel further to the bigger swimming baths until we were much older, and then that was a luxury as they were indoor and heated.



We also spent many happy hours getting train numbers outside our front garden, and we would sit for hours watching for the big express steam trains thundering by on the London to Edinburgh Lines, and also the very large Iron Ore trains travelling up another line from Tyne Dock to Consett Iron works and back again.



I don't think we did anything which could be looked at as misspent time, because to us time was valuable, but we were happy and usually very tired at the end of the day.



When we went to junior school we went there and back on a bus, but later on when we went to the Upper school or borstal as we all laughingly called it, we would walk there and back a distance of 3-4 miles each way, even in the bad weather.


Unless it was pouring down then we would get a bus, rather than sitting in a classroom all day feeling wet and cold.



It was not a borstal but a secondary modern school, but we all loved calling it a borstal, because of the way some of the teachers would react to us.



Today no one seems to walk to school; their parents take them by car, so they don't get the needed exercise or the fun. We all enjoyed the walk, as it was good fun walking there and back, and we all enjoyed each other’s company.



During this time many of us were in the Cubs and later the Boy Scouts, so life was very busy, and there never seemed time to spare. A few of us were also in the local Church Choir, and that took up two nights a week for choir practice



We spent many happy holidays camping with the scouts, travelling to faraway places, and later on in the winter months we had the Scout Gang Shows.



These were brilliant to do as we would get dressed up in weird costumes, and do sketches of parents events, comedy and dance and singing routines, along with one or two stranger things like doing the Swan Lake Ballet in ballerinas outfits, but with hiking boots on our feet instead of the correct footwear, simply because we could not wear the shoes.
 
It was a brilliant way to let your hair down and have fun

But I look back on most of this with pride, although I did have problems, but I suppose most people had them one way or another, and if you were extremely lucky as some were, these soon disappeared from your memory.



One or two were stuck with lifelong memories that would perhaps never go away



Like many people at that time we never got into trouble with the police or anyone else, simply because we were terrified of fathers reactions afterwards, that was simply something you never went into because of the fear of our fathers.



That was a brilliant deterrent, although my father was not amused when I spoke about years later, because he said it made him feel terrifying, although he did admit to being frightened of his own father.



 But it did no harm because if you respected others and the police, you were looked on as a little angel something I know that I was not, but I had a great deal of respect.



Sometimes we would go to one of the local the cinemas, something of a treat.



I can remember going to see one film about a Robot called Robby.  Before the film was shown there was a lorry going round the shopping area carrying this Robot on the back.

Strangely enough the other day while searching the Internet, I actually found a clip of Robby the Robot, and it all came back so fresh that I could have seen the film yesterday.



Looking back these cinemas were very dark and dirty, and always had mice etc. running round the floor, so we sat with our feet firmly away from the floor as we did not want anything walking around our ankles.



Yes it was active and happy, there were weird people around even in those days, but they were not as obvious as they are perhaps today, perhaps in those days they feared the law or reprisals from parents.


It’s so sad that today we get these people preying on children, but perhaps they are getting more publicity these days than they ever got before.  



 But these days children just seem to want to watch television or play games on the computer, they don't go anywhere and hardly walk anywhere.



 I do feel that technology rules people’s lives these days, including children, and while it is a good thing, it can take over your life if you are not too careful.



It does bother me that future children will grow up, not knowing what fun is, and life will be very tame for them.


Yes falling out of a tree hurts when it happens, but you soon learn from the experience, and do things in a different way the next time round.

 

Government suggests need for new National Dementia Strategy for England

This week in Parliament, Conservative MP Alec Shelbrooke tabled a debate on improving dementia care and services in the UK.

During the debate, Norman Lamb MP, Minister for Care Services, signalled that momentum from the National Dementia Strategy for England must be sustained beyond 2014. When referring to the end of the strategy he said:

'It is absolutely clear – that something must follow; there must be a continuation.'

As a person with dementia who worked on this National Dementia Strategy, alongside many other people, I confess that I am  a little staggered to see many things we agreed on, simply not happening at all. It took a long time to get this organised and launched, and we all thought that was the hard part, but I think many were proved wrong.


The PCTs were simply not ready or in agreement for this simply because it was not mandatory in the first place. Some made many changes while others lagged behind, but now we need them all on board for the benefit of all who have dementia.




If we have a National Strategy then please make it mandatory, so that it happens in all corners of England and not just where it suits



Its my own personal view that while the National Dementia Strategy is a wonderful thing, it did not go far enough, and many things were left open rather than making them mandatory.



We are still seeing people with dementia being badly treated and abused, in places like care homes, simply because their staff are unskilled in dementia care, and the care home owners refuse to train their staff because it costs them money and time.



This is very wrong as care home places cost a lot of money in the first place, but it proves that the standard of care is not going up with the costs.



I get annoyed when I hear these care home managers and owners, say that they can not afford to train their staff, because to me its their right to do the training, and they should not be licenced as care homes, if their staff are not trained properly, and their operators licence should be revoked.



These people who abuse people with dementia are nothing short of criminals, and should be treated as criminals, because they are abusing those who cannot fight back or in many cases help themselves.



I also feel that the money for the strategy was not ring fenced, which allowed many around the country to use it for other projects, something which was fundamentally wrong. If you put money into a project then it should be ring fenced to protect its misuse.



General training also need to be ramped up so that its mandatory in all PCTs and doctors surgeries etc



We are now seeing Nurses being trained in universities in how to cope with people who have dementia, but PCTs are not enforcing this, simply because it costs money, and this should be enforced around the country so that the same care is received in all areas of the NHS and the private care system.



When this happens we may well get somewhere.



But I do hope that this government carries on with the Strategy and makes it run for another 5 or so years, so that dementia care reaches the right standards around all of England not just certain sections

Its up to us all to make it happen, by forcing the Members of Parliament  to listen to our concerns  where dementia is concerned.



Go out and tell your local MP now, we must keep the strategy going for another 5 plus years and then we will see some wonderful changes.

 

Families and dementia

I often listen to my children, when they are talking about how my life changed, before the diagnosis, and it is amazing to listen to.



I was not the old father figure that they had been used to I had changed, and had turned into someone else they simply did not recognise.



I was in danger of losing my long term Job as a university College Engineer a job I had done for 28 years, a job I had also been doing for nearly half of my working life, and everything was seemingly crumbling around my feet, and I could not find a way of stopping it.



I had gone from doing Building and Electrical Estimates, Electrical Engineering work and College Budgets, to sitting counting on my fingers, all within two years, and nothing made any sense anymore.



I forgot people’s names at work, and on two occasions forgot where I was going, when I was walking to work, a route I had walked for well over 10 years. I would attend meetings and would leave having no idea what had been said.



My electrical exam papers which were in a file at home, made no sense at all when I looked at them. In fact it all looked like a foreign language, and that was distressing, but our daughter kept saying, let it go, but how could I it was my job.



Yes they all guessed that there was something going wrong, but like myself never expected anything like early onset Lewy Body Dementia, and like me they all thought it was an illness that only the elderly got.  I kept saying, I am going mad.



During this time my wife had a running battle with our doctor who was adamant that I was just depressed, and my wife was adamant that I was not, as she had seen and worked with people in that condition. She then demanded a second opinion, and then things started to move, but all this was now starting to have an effect on my children as well as my job and my dear wife.



 As things moved on our daughter was more engaging that our Son, but perhaps that was because she had just left University and had a degree in Biology, and could look at things in a different way.



Where our son was out of the link so to speak, difficult to get through to, but I guess that was because he either understood or accepted the diagnosis.

He has now changed and is very supportive, even though there are times when I think he is still unsure about what is going on.



After the 3 grandchildren came along my Daughter spent time discussing my problems, with them, although they struggled at times, but they are truly wonderful and supportive of me, so much so that I cannot do anything wrong in their eyes.



Anything which goes wrong was not my fault but the illness you are living with.



My daughter had problems describing the illness with the name of Lewy Body Dementia, so she chose instead to call it "OLD TIMER'S"



So now whether I like it or not, anything which goes wrong is not my fault, you just have Old Timers, Grampy.



Hard though it may be I have accepted this through the Grand Children, and try to make sure that I don't let them think I am worse that I am.



I have made light of the illness a few times, and have then come under the wrath of these Grand Children, for trying to do things that are impossible to do now.



Each time I forget something, or try to remember what to do, when I am with the grand children, one of them usually comes out as say's well, it’s your old timers, don't worry we will help you.



Leave that to us, you’re not to do it or should not be trying to do that.



Every time we go for a walk, there is a scrum, between the three of them, to see who is going to hold my hand, as it seems all three want to help in any way they can.



These children are so protective of me that it is sometimes very hard to cope with, but I know that they all mean well, its just so difficult to explain and understand in children that are so young.



There is a strong bond between us all especially between, myself and the eldest who has a mild form Asperger’s syndrome, and although we spend a lot of time together while the two youngest sit and play, she also steps aside, to let someone else have some time with me.



There is no doubt in my mind that young children are capable of getting to grips with illness like dementia, and seem to have an uncanny knack, of understanding more than adults give them credit for. Perhaps this goes back to when we were young, and were kept well away from Grandparents who had illness like this.



I used to be very proud of my spelling and grammar, but now that’s all on the way out, and I find it very distressing when I see silly mistakes. So when I spend time with the grand children doing spelling, it is very hard, but one of them usually comes out with the same old excuse, you can be allowed to forget because you have old timers, we are learning these words and have no excuse.



These people were usually kept out of sight of everyone, and in so cases they here sent into cottage hospitals or institutions where they went unnoticed largely because no one understood this illness, and in some cases many thought that those with dementia were mad.



Now we are seeing a sea of change and in some saes it is led by children, who want to know more about the illness, and although very hard to accept it is wonderful to know that it is happening.



I often look back and wonder just how bad things got at home, before I was diagnosed, because in all honesty, I don't remember. I think I was so wrapped up in my problems at the time wondering what was going on that I did not think of anything or anyone but myself.



I don't think I was capable of understanding anything at that stage, because there was very little support, apart from my dear Wife and Daughter, and that carried on until I was finally diagnosed.



Although I was under strict instructions from my daughter, never to stop and give in to the illness, otherwise she would come back home, and sort me out. While she was around she never allowed me to sit and worry in any room, but would try to keep me occupied on one thing or another, and I will be eternally grateful to her and my wife for all the support they gave.



My son these days although still struggling to come to terms with my illness, does try at times to get to know more about what is happening, but I do think that he is so emotional that he is frightened of what will happen in the end.



So in all families we all see dementia from different angles, and although it may be hard to cope with when you have the illness, I have no doubt now that it is harder for our families to cope with as they are watching our every move.

 Yes this is a horrible illness, but I do think that it has brought the family together, and has made them stronger, and if everyone has Grandchildren like this, we will soon remove the stigma from dementia because it's children like this, who will remove it in the future. They will also raise the profile of dementia so that its at the Front where its seen, rather than Out of Sight.

I never thought I would see the day when I would see any Grandchildren , now I have four, and they really make life worth fighting for, along of cause with my dear wife, daughter and son

University of Cumbria leads the way in dementia education

THE University of Cumbria is one of just a handful of UK establishments which has added dementia education to its curriculum.

It has become one of just 53 UK universities in the Higher Education for Dementia Network (HEDN), which has developed the Curriculum for Dementia Education (CfDE), in a bid to improve the knowledge and skills students will need to go on to work in health and social care.



“We are excited to be involved in the launch of this curriculum,” said Linda Morrison, programme lead for the foundation degree in health and social care at the university.



“As the first university in the UK to deliver a foundation degree with a named pathway in dementia care, the CfDE will also be embedded in all our health and social care programmes.



“This is a wonderful opportunity for those who provide services to people with dementia, as

education specialising in dementia care is now gaining the recognition that it deserves.”
HEDN, which is coordinated by charity Dementia UK, has developed the curriculum over a number of years through consultation with people living with dementia, their families, dementia care practitioners and network members.



This followed from research conducted by HEDN which identified that coverage of dementia in most UK university health and social care courses was ‘inadequate and inconsistent’.

Rachel Thompson, chair of the organisation, said: “Dementia needs to be integral to education for all health and social care professionals but also needs to be delivered in a consistent and systematic way.


“We hope that the CfDE will provide a framework to ensure that this happens effectively and across all education providers.”




I wish this University the very best of luck with this and hope they succeed, because we need more of these schemes to be set up around the Country so that we stop hearing the horror stories about people with dementia being ill treated in hospitals and care homes etc.



The North of the country seems to be doing extremely well where dementia training is concerned and I have been very privileged to have been a part of it over the last few years, through my links with Northumbria University



I work at times with Northumbria University which trains Graduate Nurses in dementia care, and its good to see this happening in other places now.



But we must not forget the voices of those with the illness, their carers, family members and friends who all have a role in teaching people about dementia.



We cannot take everything we see in textbooks as gospel, because some of it may well be out of date or written by someone with little or no knowledge if the illness



I occasionally go to speak to the students about living with lewy body dementia, and a carer  goes to speak about her life with her husband, when he had dementia before he died.

These stories can play a big part in all training as it comes from those at the front so to speak.



We should also remember that there is no one size fits all, training scheme where dementia is concerned, as there are too many variations.



There may well be 10 or so different types of dementia, but within that there are well over 120 variations, and no two people have the same problems or symptoms, so this training has to be well planned and set out.



We all go our separate direction, so in many cases this illness is not a text book illness, as many think.



Dementia has been a subject which has been largely hidden away by society for too long and now its time for it to be brought out of the shadows. Its time it was discussed in many places so that these young people who are our future can do something positive about raising the profile of the illness.

 
  

  

French bowls helps dementia sufferers

PETANQUE AT THE PARK ... Liz Williams, front, with the Dementia Friends group in North Marine Park.

 

 

A GROUP of kind-hearted volunteers have turned part of a South Tyneside park into a dementia-friendly area.

The Friends of North and South Marine Parks in South Shields have teamed up with the Alzheimer’s Society to reach out to people with the debilitating condition.



Members of the group have undertaken hour-long awareness sessions with the charity’s staff to become Dementia Friends, and increase their understanding of the disease.



And they are putting their expertise to good use at North Marine Park, where petanque sessions aimed at people with dementia and their carers are held on a monthly basis from spring to autumn.
One of the Friends of North and South Parks, Jack McCaffery, from Whitburn, whose late wife Cathy had dementia, waxed lyrical about the venture.

He said: “My wife had dementia and so this projec
t, which is brilliant, means a lot to me. You can see what pleasure people with dementia get from playing petanque.



“A lot of people with dementia don’t get out to do anything, and even carers can be unsure about taking them out and about, but they now know they can come here without any problems.

“When my wife died, I was pretty low and I was brought out of it by Liz Williams from the Alzheimer’s Society. We started a sensory garden and that got me into being one of the Friends, and now I do my bit to help them as well.”



South Shields-based Alzheimer’s Society dementia support worker Mrs Williams has been working closely with the group, and set up their Dementia Friends session.

She said: “They set up a special petanque session for people with dementia, and their carers, to come down and have a bit of fun.



“The sessions made them more aware of the impact that dementia can have on people, so they could support them even if their cognitive skills weren’t good and they were having difficulty with the bowling. It is an enjoyable group and a huge success.



“They have created a really warm, dementia-friendly atmosphere within their community garden, and hopefully other groups in South Tyneside, such as shops and leisure facilities, will take a leaf out of their book and become dementia-friendly.

“I became a Dementia Friends Champion and I run awareness sessions, but anyone can become a champion and deliver training, and I’m hoping more get involved.



“South Tyneside is second-best for dementia diagnosis. Let’s make the area the most dementia-friendly.”

Social media and people with dementia

Some time ago I looked at this subject and could not get my head around it very well, so I am having another go



I am wondering whether it is beneficial for people with dementia to use social media, and I think it does by the number of individuals with this illness using blogs, and social media websites such as Twitter and Facebook.

Of course there are various places we can go and I don't know them myself so cannot discuss them

A few years ago I was told by my consultant to write my life story as a way of keeping my brain active.
I then noticed and got involved with social media websites as a way of finding out more about my illness, Early Onset Lewy Body Dementia.



Since then I have found many new friends around the world who were doing the same thing, and we all share the information, on a regular basis.



However this can cover a very large area and many websites, chat rooms and blogs.



Blogs



Blogging allows you to write down items about you and your illness, without expecting anyone to answer.


My consultant told me, that by writing my problems down it would help me to come to terms, with some of them.


It also helps me to look at the other problems we face on a daily basis, such as negative media reports about miracle cures, which are then shot down in flames by researchers. Many of these things cause us a lot of upset and disgust, as we have an illness which has no known cure, and these headlines are down just to sell newspapers, and nothing else


Blogging allows you to look at what is happening around the world where dementia is concerned, because I get some interesting answers at times



Facebook



Facebook is somewhere where we find teenagers etc, who are very interested in learning more about Grandfathers or Grandmothers illness, without being told by parents that its none of your business, or you simply don't understand.


There are many groups on facebook relating to dementia, so its a good place to go for help and support from people in the same position, although we must remember that we may have a similar form of dementia but we may also have vastly different symptoms



Twitter




Twitter seems to a be far reaching web news website, where any news gets maximum coverage at the click of a button.



While not everyone can benefit from social media as they simply were not diagnosed early enough, it is beneficial to many others. I was told to keep my brain active in the hope that it would not slow down, and although this is good advice it does not always work, as we all have good days and bad days, so its a case of doing what you can while you can.


This has a faster response at times but to me its not as personal as the other websites, as you can also get people following who will never agree with anyone



Dementia Websites and Chatrooms



These vary around the world, some are set up for all users, while others prefer to keep people with dementia in a separate section to caregivers or carers. This is for various reasons, but I think the main one is that some Caregivers think that because they have looked after one person with dementia, they know it all, and this causes a lot of upset, among those with the illness.


The reason being that there may be around 12 types of dementia, but within that there are over 120 variations, so whatever happens no two people with the same form of dementia have the same symptoms or problems, so no one answer fits all. I did once speak about social media at one event, and was then spoken to by a professor in dementia, who then said that some of these chat rooms can have the wrong effect on people with dementia.



After his discussion I understood where he was coming from, because although most caregivers or carers are trying to do their best to help us, one or two, push the boundaries too far and cause problems.



I have not come across this type of thing recently so I do not know if it still goes on.

But many chat rooms do a very good job, in supporting people with the illness and their loved ones, and long may they carry on.



There are also a few very good websites which are only for people with dementia. I have visited one or two, but my spelling and grammar are not what they used to be so I cannot go there now as I don't wish to make myself look silly.


 I know we all make mistakes, but I always had pride in my spelling and grammar, so when it slips, you feel like giving up altogether


So to me these places do a wonderful job, providing of course that we can all use the computer and have access to the internet.