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kennc
kennc aged 69
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Dementia Strategy

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Dementia is a devastating disease, which affects many hundreds of thousands of people directly and indirectly, because it not only affects those with the illness, but also their carers, members of their families and sometimes their friends.

This disease has taken over the role Cancer had in the 1950-60 as the most feared disease in the face of the earth, as there is no cure, or universal way of slowing it down.

We also see carers, who are seeing, perhaps someone you married many years ago, changing in front of your eyes, and knowing that before many years have passed, that person will no longer be able to recognise you anymore, speak or do anything for themselves.

However we are seeing the new National Dementia Strategy unfolding around the country, and starting to see how its changes are affecting peoples lives in some places and how long awaited improvements are being made in others.

Thousands of people with this illness, carers along with families and friends have waited for this for some time, and are eager to see it working properly for the benefit of all concerned.

The changes are immense but sadly it all depends on the local PCTs to make sure that it works and works well, but we all have input and it is down to us to ensure that the patients word is heard along with the carers.

However, although the strategy goes a long to help, we should also be looking how we can start to re-train people, in an effort to change the culture and education, as far as dementia is concerned, so that everyone understands what it is like to live with the illness, and how they can cope with them in a better and understanding way.

A lot could be achieved by training staff, to treat people with dementia, with the respect and dignity they deserve, because dementia is a journey, which is taken not just by the person with the illness, but also their carers, family and loved ones.

We hear a lot about problems when someone is admitted to hospital or a nursing home, and this is usually made worst by the fact that neither, the nursing staff or the doctors understand that the person has dementia, or what dementia is. Sadly, this is lack of training, and this has to be looked into before things can get better.

I also hope that the training goes even further, and we stop hearing the horror stories, about people in the later stages being treated badly by untrained staff. In this day and age we should be having all staff being trained properly, so they understand what it may be like to have this horrible illness, and we should be paying them to do the job properly.

Dementia and the National Dementia Strategy

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We are now seeing the start of the National Dementia Strategy around the country, and in many cases seeing changes in how people with this illness are being looked after. This is a godsend to all whether they are those with this horrible illness, carers, family members or family friends.

Dementia is a devastating disease, which affects many hundreds of thousands of people directly and indirectly, because it not only affects those with the illness, but also their carers, members of their families and sometimes their friends.
This disease has taken over the role Cancer had in the 1950-60 as the most feared disease in the face of the earth, as there is no cure, or universal way of slowing it down.
We also see carers, who are seeing perhaps someone you married many years ago, changing in front of your eyes, and knowing that before many years have passed, that person will no longer be able to recognise you anymore, speak or do anything for themselves.

However, although the strategy goes a long to help, we should also be looking how we can start to re-train people, in an effort to change the culture and education, as far as dementia is concerned, so that everyone understands what it is like to live with the illness, and how they can cope with them in a better and understanding way.

A lot could be achieved by training staff, to treat people with dementia, with the respect and dignity they deserve, because dementia is a journey, which is taken not just by the person with the illness, but also their carers, family and loved ones.

We hear a lot about problems when someone is admitted to hospital or a nursing home, and this is usually made worst by the fact that neither, the nursing staff or the doctors understand that the person has dementia, or what dementia is. Sadly, this is lack of training, and this has to be looked into before things can get better.

I also hope that the training goes even further, and we stop hearing the horror stories, about people in the later stages being treated badly by untrained staff.
In this day and age we should be having all staff being trained properly, so they understand what it may be like to have this horrible illness, and we should be paying them to do the job properly for what is a very hard but caring role in looking after those unable to look after themselves.

I also think we should be looking into getting more dementia friendly buildings, especially public buildings, which are sometimes a nightmare to get around.

I once went to a famous Art Gallery with my wife, and decided to go to the toilet. I followed the signs to the toilet area , where I was confronted by the biggest art mural I have ever seen.

All the doors and door handles blended into this and I had to stand and wait to see what was going to happen. Lucky for me a part of this mural moved and it was the door into the gents toilet. Had it not have been the right toilet door I would have been in trouble.

I have been back recently and noticed that this area has all been changed for the benefit of those with this illness. The sad thing is that when you are inflicted with this illness, you need to look at signs like a toilet sign, over and over again, to make sure that it is the right sign and the one you are looking for, and that is something that I find very hard to cope with now.

However it is also nice to see that many architects are starting to take dementia on board, and are looking into how buildings can be build as friendly as possible.

However I hope that we now get all the people with this illness being treated with the dignity and respect they deserve, which to be honest does not cost a thing.

Treat everyone the way you would wish to be respected, if you were in this position.

Dementia and Hobbies

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When a person is diagnosed with Dementia as I was, it feels very easy to give up all the hobbies and past times you have, as you feel undervalued and useless.

But it is well worth keeping these hobbies going as long as possible, because they are a lifeline to the past.
I say that because as the illness progresses we start to loose these hobbies for one reason or another, either because we forget what we are doing or they simply become too dangerous to do.

I used to do wood turning and found it relaxing until the day I forgot how to switch it off properly and just grabbed the revolving block of wood, with sad consequences, as I nearly broke all my fingers.
I was devastated not only because I could not remember how to switch it off, but also because I loved that hobby and did not want to stop doing it.

So this machine was dismantled and left on one side in the hope that we could sell it.

I still love drawing, but there are days when I simply can not get it right, but I always remember my old consultant telling me that, If I can not do something one day to leave it. Try another day and if it works, that's fine. But if it does not work, then try to forget it and move on to something easier.

If you don't move on , you are leaving yourself wide open to depression and that simply is not worth it.

There are thousands of people with this illness all doing hobbies of all descriptions from painting and artwork through to photography, which is something else I enjoy.
Yes we may forget the settings as I do, but at least the pictures which do not come out can be removed and the other good ones kept for the future.

I also find this a very relaxing hobby, as I spend hours down the local park looking for wildlife etc

So please don't give up hope along with your hobbies, as they can be a lifeline.

Ken

Assistive technolgy and people with dementia

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Many people assume quite wrongly that a person with Dementia can not use assistive technology.
However when we think about this, why is it so wrong for people with dementia to have this equipment, when most people use it all their lives at home and at work.
Because like it or not assistive technology covers all the things used today, whether it is a mobile phone, Dictaphone, hearing aids, computers, walking sticks, chair lifts, the list is far too long to mention.
I have also been told by people in the social services on two occasions, that it is against the civil liberties of people with dementia to have to use this type of thing.

But it is my opinion that when you get this type of diagnosis you then loose your civil liberty’s as you then have to rely on others.
Assistive technology comes in various forms, and most of this equipment is there to help us to retain our freedom and independence for as long as possible, without others feeling the need to be watching us every minute of the day.

One of these things used quite often is a form of tracking device which allows the person, with dementia to carry on taking walks unaided. Most of these can be tracked on a standard computer, in a similar way to that used by some parents who wish to track their children, by tracking the position of the mobile phone using a computer.

While most mobile phones can be tracked this way, some of the older phones do not have this facility.
I personally find nothing wrong with this as I have my freedom.
Another device which I find useful is voice activated software, which is loaded onto my computer and allows me to dictate what ever I wish to the computer and it types it all out.

This is very helpful to me as there are days when I struggle to use the computer keyboard, and although it is extremely odd watching the machine type the words you are speaking, it has removed a lot of the daily stress.

But I would advise everyone to go and see what is available on the market to make life more manageable, as this illness can make life difficult for anyone.

Treating people with Dementia with the Dignity you would expect from others

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By educating and training people to understand the problems people with dementia struggle with on a daily basis, we will then start to see people with dementia being treated with the care and dignity, that you would want from others.
Please don’t patronize us by asking a question and then trying to answer it. Give us the chance to think of the answer, as in many cases we need time to process the information before giving you the answer.
Look at the person and not the dementia.
Remember that many get flustered because unlike you, they simply cannot come straight out with the answer, and if things go wrong we sometimes come out with the wrong words, and that leads to accusations of aggressive behavior and being rude.
I have heard this on many occasions, which makes me think that the accusers really do not have a clue about the basics of this illness.
Treat the person as you would have done before the dementia, we may have an illness, but in many ways we are the same as you, we are all human.
Try to speak clearly, carefully, slowly, and where possible face to face, so that we stand a chance of understanding what you are trying to say.
Please don’t assume that you know all the answers about dementia and what it is like to live with it, but ask us, the people living with Dementia, and we will tell you what our problems are.
Remember that people with strong accents, asking questions can be difficult to understand when you have this illness. As someone who grew up in the North East I now struggle with the accent these days, so if it is difficult for me, think what it is like for others.
Try to speak in a calm voice and not get agitated otherwise it makes those with the illness react in the same way.
Do not discuss our problems with anyone else while we are there as that is hurtful and disrespectful, we have ears and a tongue, and so we can answer back ourselves.
We all develop routines that help us to get through each day, so please don't stop us doing this.

Life with dementia and routines’

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I have heard of many people discussing patients, who forget their medication and it made me think about it seriously.

After getting the diagnosis of dementia and being put on medication, we are all told that we must remember to take our medication, and one way of doing that is to try to have a routine and stick to it.

That's all well and good when you have a good memory, but when you have a memory that does what it wants to, it causes problems to the owner.

I have a routine that I try to stick to on my own, but when things change this causes many problems especially when it comes to taking tablets.

I always take my tablets after straight breakfast, straight after lunch and then straight after tea. I say "straight" after for a good reason, because if anything disrupts me, I am in a mess, because I completely forget the tablets and carry on as if nothing had changed.

There have been times when this has happened at breakfast and then lunch, and then by tea time I realize that I have not had any tablets that day.

My wife used to get very upset with me, but then she realized that it was just the way things work, and she now checks to see if I have taken them. But like all careers, she has a hectic life and she can also forget when she is tired.

I also find it hard when using my inhalers, because I tend to forget at times which ones I have use, and no matter which way I do it, it still causes me grief.

Going on holiday can also cause problems to routines, because at home I always find it easier to shave after breakfast when I feel more awake. Where, when we are at a hotel I always feel that I should get a shave before showing my face outside the room.
The problem is that this then throws my routine out of line completely.

We can never win but we keep trying...




Dementia and Marble floors

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Many people like myself struggle when they enter modern buildings, and this is for many reasons, but now scientists believe that people with dementia are seeing things like marble floors in 3D.

Marble floors, for example, or those with decorated tiles which are heavily patterned, like the big hotel floors which are also very shiny
Research has shown the dementia can cause a form of 3D vision, leaving a floor to loom pitted with holes and a shiny one will seem slippery
Sometimes the marks on a marble floor represent other things like snakes, and this causes problems to many others.
I have struggled with these quite a lot in resent months but thought it was just me as I was very tired, but now I know there is a real problem.

I was in another hotel in London where the walls and floors were also a black marble with white lines running through them, and one of the bedroom walls had a lady’s head embossed into the wardrobe door, and this could be seen during the night which spooked me and made me feel as if I was being watched all night.

I recently had a double whammy when I stayed in a hotel while on Holiday in Malta, and it had a heavily marbled floor and in the centre of the hall there was a very large 8 pointed star.
Although I struggled with this at the time, I tended to walk around it.

The other night I went to sleep and woke up in the middle of a horrendous nightmare. The star was in fact crocodiles with their heads pointing into the centre, and every time someone walked near they would move fast and grab them.
This was one of those nights when I just could not get away or wake up from this nightmare, and to make things worse I could not get out of bed for fear of standing on the floor, because my brain was telling me that these crocodiles were actually on my bedroom floor.

The memory nurse yesterday explained that it was all normal in my Lewy Body Dementia, and her explanation helped me to understand it a little more.
It was also said that where possible I should steer clear of this type of floor.

Dementia and the effects of snow

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This weather looks very nice from inside the house, but it causes untold misery to those like me who have this illness, or some other illness that involves the brain.

Like many I have to walk where I can, and with special awareness, I tend to plan my route as I am going.

This means I spot the point where I want to be and head for it, avoiding traffic or obstacles that get in the way.

However on a normal day this is a waste of time, as everyone else seems to take the direct route, and if that means pushing you over so be it.

But when we add the snow and ice, as we still have these days it causes more distress.

As well as aiming for my destination, I also have to watch for and navigate the snow and sheet ice, and keep out of the way of others, who are determined to get past come what may.

I confess that I will be pleased to see the back of it, yet we have not had as much snow and ice as others, and we are now down to around 10 inches on the gardens.

Roll on the sunny weather

Modern Buildings and dementia

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Many people with Lewy Body dementia, like myself struggle when they enter modern buildings, and this is for many reasons, but now scientists believe that people with dementia are seeing things like marble floors in 3D.

Marble floors, for example, or those with decorated tiles which are heavily patterned, like the big hotel floors which are also very shiny
Research has shown the dementia can cause a form of 3D vision, leaving a floor to loom pitted with holes and a shiny one will seem slippy.

Sometimes the marks on a marble floor represent other things like snakes, and this causes problems to many others.
I have struggled with these quite a lot in resent months but thought it was just me as I was very tired, but now I know there is a real problem.

I was in another hotel in London where the walls and floors were also a black marble with white lines running through them, and one of the bedroom walls had a lady’s head embossed into the wardrobe door, and this could be seen during the night which spooked me and made me feel as if I was being watched all night.
I recently had a double whammy when I stayed in a hotel while on Holiday in Malta, and it had a heavily marbled floor and in the centre of the hall there was a very large 8 pointed star.
Although I struggled with this at the time, I tended to walk around it.
The other night I went to sleep and woke up in the middle of a horrendous nightmare. The star was in fact crocodiles with their heads pointing into the centre, and every time someone walked near they would move fast and grab them.
This was one of those nights when I just could not get away or wake up from this nightmare, and to make things worse I could not get out of bed for fear of standing on the floor, because my brain was telling me that these crocodiles were actually on my bedroom floor.
I once went to a modern art gallery, and then decided that I needed to go to the toilet which was well sign posted, that was until I reached the area where the toilets were and found that all of the doors, and door handles were blended into an enormous mural. I stood there for what seemed a long time and then saw part of the picture move, and to my delight, realised that it was the gents toilet door way which had moved.
I have been back recently and found that this mural has been removed, so it must have could others out as well

Guidelines for treating people with dementia

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Look at the person and not the illness, and treat the person as you would have done before the dementia.

Remember that many get frustrated because, unlike many people they simply cannot come straight out with the answer, and if things go wrong we sometimes come out with the wrong words, and that leads to accusations of aggressive behaviour or us being rude. I have heard this on many occasions, which makes me believe that the accusers really don’t have a clue about this illness.

Please don’t assume that you know all of the answers about dementia and what it is like to live with it, but ask us. We are living with it and therefore we can tell you about our problems.

Remember that people with strong accents, asking questions can be very difficult to understand, when you have this illness. As someone who grew up in the North East, I now struggle with the accents these days and if it is difficult for me, what is it like for others.

Many have hearing problems which may be acute as in Lewy Body Dementia and other may be losing their hearing, so they may not be able to understand clearly what you are saying, so please accept this, as this causes us stress at times, and that could lead to us being accused of being rude or aggressive.

Try to speak in a clam clear voice and not get agitated, otherwise it makes those with the illness react in the same way.

Do not discuss our problems with someone else while we are there, as that is hurtful and disrespectful, we have ears and a tongue and can answer for ourselves given the chance and the time.

Many of us have developed routines that we go through each day, and we should be allowed to carry on with these, as it allows us to be in control for that little bit longer. It also decreases the decisions that we need to make on a regular basis.

Some people are struggling to come to terms with this illness, some even deny they have it after the diagnosis, and it is up to you all to give us the support and care we need.

Dementia and Hearing Problems



Everyone who has Dementia or a Neurological illness, has quite a lot of things to contend with in life, and it is very hard on bad days, especially when you have early onset dementia.

However when other problems such as lose of eyesight or hearing come in with it, we end up with a very different ball game. Dealing with brain problems, causes quite a lot of upset, but these other problems make life so much worse, and can let you get to the stage where you feel like giving up any activities you attend outside the family home.

Although I have had problems over the years with double vision, I have found ways of getting round it, such as closing one eye when trying to read, but this makes the eyes saw and tired. I was once given exercises to do, sitting and moving a pencil up to the nose and out to about 9 inches again. I confess that I always felt cross eyed after this, and these days I don't even bother attempting to do it.

However when the hearing goes, there is more that can be done, starting with hearing tests.

Through my Lewy Body Dementia, there are days when my hearing is very acute, and that is very hard to cope with, as someone opening a bag of crisps can sound and feel as if I have a hangover, yet I know I don't.
However when you have these Neurological problems the world becomes a nightmare as you don't always understand what is being said in places like Doctors surgery's or hospitals, as people do not always speak clearly, or there is a lot of back ground noise going on, which on its own is a distraction.

So we end up with major problems when it comes to being diagnosed for some health problem, as we don't always understand the questions being asked, or we just don't hear clearly what has been said.

In my own case, it now also takes me time to work out what has been said so that I can answer the question properly, but that is because the brain is on a go slow, and not working as fast as it used to do when I was working. This is without my hearing problems, which now make things a little worse than before. This can cause problems because you find that the person who asked the question sometimes comes out with their answer before you even got going.

I used to jump when walking down the street when a bus went passed, as I did not hear it coming.
If I was working on my computer and my wife walked up and touched my shoulder, I would jump, as I did not hear anyone coming, and that was distressing.

At this time I was an Ambassador with the Alzheimer's Society, but I realised that I was missing quite a lot of what was being said at meetings, and sometimes misunderstood the questions, often leading to the wrong answers coming out.

So in the end I gave up in total frustration as I thought it was all down to my brain problems, but I was left with many happy memories, as I did quite a lot of media and TV work for them over the years.
Over a year ago I was tested and fitted with hearing aids and was thrilled by the difference.

I use these at meetings and listening to Radio TV programmes so that I can understand the foreign accents, which can be difficult to pick up. We sometimes listen to a lot of American police dramas, but some of the accents can be hard to work out, but then so can British these days.

The only down side seemed to be that I could hear every clock in the house ticking while watching TV or listening to the radio.
The most frustrating thing is the music, that sometimes comes with these dramas. You are struggling to hear what the actors are saying, then all of a sudden the music kicks in and you end up being deafened.

I do think that many programme producers, have no idea what they are doing to people with hearing problems, and while I can understand some of the reasons behind using music, I don't quite understand why it has to be so loud.

Even documentaries do the same these days, and we even get loud music while the person is talking, so when the happens I just give up and switch off.
However I know that my hearing is going, but I don't wear my hearing aids on a bus or train, as I don't want to listen to other peoples music or listen to their exploits during the last night, but my wife is usually there and keeps me informed till we get off and I replace my hearing aids.

One of the reasons for doing this is that people are not as quiet as they were years ago, and they don’t respect your peace, most think everyone should hear what they are doing or what they are listening too.

Now I understand that I was given the wrong hearing aids in the first place, and now have to return to get some new aids fitted next month, just in time for Christmas.

These are going to have a volume switch and a T loop in them so life is going to get so much better, and I will hopefully be able to hear what is going on all of the time.

I think everyone who has a neurological problem should have a hearing test as part of their examination, as it could find the hearing problems, which were not considered by our loved ones, and this makes life so much easier.

However I can recommend that everyone has a hearing test, as we all abuse our hearing without even thinking about it. When you consider the cost of hearing aids, it is well worth going out and getting some, either from the local Hospital audiology department or from the hearing shops. Why struggle when there are things out there to help.

I can understand some people have problems and don't want others to see that they wear hearing aids, but that in my mind is just another form of stigma, which many with dementia struggle with.

There is nothing wrong with wearing these and admitting that you have hearing problems, it allows others to make allowances for you, and that's all that matters.

My own was caused by loud machinery at work etc, where in the future there will be thousands of others who abused their ears with loud music.

Football memories used to help

The project was launched last year at Hampden Football kick-starting memories

A project which uses football to help stimulate the memories of men who are suffering from dementia is reporting encouraging results.

The Scottish Football Reminiscence Project is run by the Football Museum at Hampden and supported by several other organisations.
Motherwell manager Craig Brown is among those helping promote the scheme.

Men taking part meet up to look at old photographs and share memories of players and games.

The pilot initiative, which has been running for 12 months, is funded by Museums Galleries Scotland working alongside Alzheimer Scotland, Culture and Sport Glasgow, the Scottish Library and Information Council and a number of football clubs from across the country.

Those involved said they had seen positive and encouraging results.
They said chatting to the men about their memories of games, players, managers and events at the time helped stimulate their minds.

There is very little provided for men with dementia and this is a welcome innovation

One wife involved with the project said: "I drive here with this sad person with dementia and take home my husband."

"The men's life-long interest in football connected them to their former selves and shared memories.

"There is very little provided for men with dementia and this is a welcome innovation."

Robert Craig, chairman of the Scottish Football Museum, said: "It is great that football memories stretching over many years can brighten the lives of people suffering from dementia."

There are more than 63,000 people with dementia across the country and 7,000 more are diagnosed with the illness every year.

Henry Simmons, from Alzheimer Scotland, added: "The Scottish Football Museum has not only created a marvellous tool for engaging with people with dementia, but also ensured that research was carried out in the pilot, providing an impressive body of evidence.

"Football is the connecting thread between so many different aspects of Scottish life and this project uses the great passion that people have for this sport to improve their quality of life."






Noise and problems thinking

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Noise causes untold problems to people who have dementia, but recently I have noticed that it is starting to effect me more each day.

Over the years I have noticed that the noise level has gone up considerably in this life, and where most people seem to get on with life ignoring this, it has become harder for me to cope.

I stopped going to a lot of meetings which were, not kept in control by a strong chairperson, because it was becoming very difficult to listen to the main topic while others chatted among themselves, as well as the mobile phones which kept going off, because people would not switch them to silent. The problem we struggle with is concentration, and while trying to keep our concentration going on the main topic, it does not take much noise to break this and we have to think where we were all over again.

I accept that life is very busy for most people these days, but its no different to when I was working and mobile phones were not allowed in meetings. It seems very strange that many people did not have these items till the last twenty years, now it seems that many will not go anywhere without one of these things firmly clamped to their ears, whether in the street, in a meeting or travelling on a train, and you have to listen to their exploits from that day or the night before, which to me is embarrassing but it means nothing to that person them selves.

Yesterday I went with my wife to book a holiday, and found that the noise in the Travel agents was so horrific that I removed my hearing aids, as every one's voice was merging into one , just like one of my horrible nightmares, and I had to leave all the decisions to my wife, who by this stage in life is used to it.

But I often wonder why it is that people these days have to speak to loud, and don't think of trying to speak quietly so they are not disrupting other peoples conversations or in our case "our thoughts".
It seems we are all trying to out do each other.

The same thing happens when we go shopping and it seems that each shop has loud music being pumped out of the doors, so by the time you get into the shop you can not think. I know that at work we had regulations concerning the noise from machines etc, yet there does not seem to be anything covering working in shops when they have loud music.

Another thing which seems to get me wound up is when we go into a supermarket, and someone keeps shouting over a tannoy system, and repeats themselves three or four times by which time, I have forgotten what I am looking for. These places are becoming a nightmare to me, and I am starting to hate them, either because of the tannoy systems or the mad idiots with the trolleys who go hurtling round the aisles as if they were racing.

Or is it the fact that through my Lewy Body Dementia, my brain these days is now struggling to pick up sounds, and some sounds are much are louder that others.

I wish my blog could write this out without all of the mistakes and misspellings I keep finding, but at least I can still use spell check when I remember to use it.

HorsesMouth

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When I was told about Horses Mouth I really did not know what it was nor did I understand what it was trying to achieve

However it soon became part of my life and I found that as someone with the illness, I could help others whether they were people with Dementia, Carers, Loved ones, or family friends.

I have helped quite a few people and feel as if I have gained many new friends in return.

This is an independent website where people can go for impartial support and advice about any illness, and no matter what illness you have there is always someone there to help and support you, day and night.

Most of those on this website have experience in one form or another, and although Dementia is a big topic we always try to help, but do not give medical advise.

The main problem is that although there are around 12 different types of dementia, there are well over 120 variations of the illness and each person goes down a different route and has different symptoms, so no two people with the illness are the same, and this causes many problems with people who think that their symptoms don’t match the norm.

I feel that it is sometimes a very good thing to have something like HorsesMouth, as we all get diagnosed with illness such as dementia and we feel totally numb, and after the diagnosis has sunk in the questions start to come. But there is not always someone around to give you the answers, and this is where Horses Mouth can come into its own, as there are people there most of the time and quite a few have the illness.

I also feel that many people could enjoy the experience of mentoring and supporting others in their time of need, and when it works well you really get a buzz and a sense of achievement,” A job well done”, so I could recommend it to anyone who wants to become a mentor and help others through a difficult time, and usually help yourself in the process.

So if you are willing to help and have to free time why don’t you come and join us.

Ken


National Dementia Action Alliance

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As someone who has Lewy Body Dementia, I was a little sceptical at first about the National Dementia Action Alliance, as I could not see what good it could do, but now I can see a dramatic change in the way society in general looks at this illness.
A lot of charities and national bodies have joined up to make a real difference to the way dementia is portrayed, as now things are starting to look much healthier than many expected.
Many like myself thought that this would end up as a glorified talking shop, with people being involved, just for the sake of it, but my fears have been allayed and we have been proved wrong.
I think the main reason for this is that many people still feel that dementia is still classed as an old age illness, as is therefore not worth bothering with.
But in actual fact there are over 16-000 younger people in the UK alone, with this illness and this number is growing fast. The ages of these people can be as low as 30 years old and in a few cases much younger, so dementia is certainly not age related, but can strike at any age.
Like many people I get very annoyed when I hear the press talking about the illness, but then they go on to show pictures of elderly people, rather than showing pictures of people who are different ages.
Some of the worst offenders are the public services who are supposed to raise awareness of dementia.
However through the Dementia Action Alliance we are now seeing large companies and Government bodies, coming on board to see what problems need addressing, and how they can help those with the illness have a more dignified time, rather than being told that nothing can be done to help.
The Alzheimer’s Society was given responsibility for steering this group, alongside other major dementia charities.
The facts are as follows:-
The Dementia Action Alliance is formed by well over 480 organisations getting together to try to deliver the UK National Dementia Declaration; aimed at a common set of values set up by people with dementia and their carers, assisted by charities like the Alzheimer’s Society.
The idea is to set out a vision of how people with dementia and their families can be supported and encouraged to live well with the illness
http://www.dementiaaction.org.uk/

Alliance members work towards delivering this vision through committing to actions within their organisation and undertaking joint programs of work. Members are from charities, Health Trusts, Local Authorities, Royal Colleges and, local businesses.

The DAA is to achieve the UK National Declaration - but it would be great if other DAAs could be formed in other countries and we all link together - that would be amazing!

There are meetings at regular intervals both at Alzheimer’s Society Central office where the next meetings program is sorted out followed by a quarterly meeting where everyone gets together to hear about new issues and progress reports
These meetings are attended by professionals along with those charities and businesses involved and lastly but certainly not lastly people with dementia and carers, where everyone can air their views about this subjects being discussed.

Through this I think in the future we will see dementia in a different light, and hopefully this will dismiss the stigma and other fears about the illness. I know that I am not the only one hoping for a better life for those who are inflicted by this illness and those who care for them


Dementia and Transport memories

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Many people who have dementia love to look back and talk about the days when transport was reliable and things like cars were easy to work on and repair.
Things always seemed good when you could work on a car and fix any problem that came to light, but these days we cannot do that as all modern cars are controlled one way or another by computers. So if there is a problem someone needs to have a computer connected to the car to tell us what is wrong.
Perhaps like many others I had a miss spent youth, spending my time getting the care in working order, and what is more getting it as quiet as possible unlike today where cars have to be as noisy as possible, just to attract attention.
These days we see more broken down buses, cars and trains than we ever saw before, or perhaps we just did not notice it as much. I do think that people took pride in what they were doing in those days, and in many peoples eyes a brake down was embarrassing, a bit like a black mark, so you made sure that nothing could or should go wrong.


Spirituality in Dementia

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Spirituality, leads to a purpose in life, in the things we value, and what is more, gives us all “Hope” as without it we would be lost. It’s not tied to any religious belief or tradition, although culture and beliefs can play a part in spirituality, every person has their own unique experience and journey
In this day and age it may or may not include a belief in a higher power (such as a god or several gods) or the supernatural world, as each person searches for meaning in life in their own way, but spiritual beliefs, usually bring together ideas about ourselves, our relationship with others and with the world.
When I was first diagnosed as having dementia, I lost my job as an engineer, a job I had held for 30 years, along with my home which went with the job, as I was on call 24 hours a day. Then a few days later my Mother died. At that time, I felt as if I was going to lose everything in life.
Yet something kept me going. My faith and hope for the future
Most people these days are encouraged to write their life story, once they have been diagnosed with dementia, although this is better done in the early stages of the illness. This life story tells the reader whether it is a family member or a member of nursing or care staff, who we are, and where we came from, what we did in life, what we enjoyed in life, including our religions, if in deed we are religious, our hobbies and things we get so much pleasure out of.
For me I love watching nature, I love animals and birds etc., and delight in watching all creatures in world today. However it is vital to find out more about the unique individual who has dementia, and about their preferences, and then find ways in which the person can be spiritually nourished.
My own life story took off, and took on epic proportions, as the gates opened and the memories flooded back, usually at times when I could not write them down. But staff and carers may learn from this that the person loved spending quiet time outdoors, visiting gardens. In this situation, the care provider should work hard to facilitate access, to this type of environment.
Only with time can care staff come to understand what a person is trying to say and to grasp the expressions – so often non-verbal – that have a possible spiritual meaning. However the life story should be more than just our earlier lives, but should also take on board changes, since the diagnosis of dementia, so we have to look at how my life has changed, and how I get around the problems faced. A good quality of life is something we all cherish, but when dementia comes along many people don’t see beyond the illness.
Many years ago I was a member of a church choir for 10 years, and I used to get a lot of pleasure going to church until this illness started, then I found that I could not remember the Lord’s Prayer, something which was horrifying at the time. So I changed services at the church where we lived in Oxford, as it was much quieter, which allowed me to think, and it was more personal
When we moved back to the North East, I was given medication which allowed me to think a bit clearer, and after a while I started to remember most of the words, which was marvelous, until I started to go back to the church I was brought up in.
It was then that I realised that the words I had learnt, bore no resemblance to the service, as they used a different format at each service, and what was worse, was the fact that they had started to sing it rather than say it. My main problem was that I had lost the ability to sing and read words when I was in church etc., and I also had problems singing hymns and psalms, as I took time to remember the tune, but could not tie the tunes to the words, and even today I still struggle at times.
However one day in sheer desperation, I sat down, and after many attempts, I had written a letter to a Bishop explaining the problems associated with neurological illness and changes to church services, including my problems of sleep patterns.
I did this because I was misguided enough to believe that a Bishop would be sympathetic and understanding, but what I shock I got when I got his response. He more or less told me to get up on a Sunday morning, and go to 8am Communion, where they used the King James Version of the prayer book, and I would have no further problems.
He obviously did not take on board that I have sleep problems, so in reality there was no answer to his comments.
This made me understand that many in society do not understand dementia so we must make allowances for them even though it can be hurtful, but through perseverance we will educate them all about the illness.
Many people like myself who get this diagnosis, look at our lives and take stock of everything we stand for, and everything which means so much to us, including our life story, our religion and families, friends and last but not least our pets at home.
We start to think about all of the happy times we have had, and sometimes look at the mistakes we made in life. Many of us still long to carry on doing things that we have done in the past, although many things either become too difficult or we have forgotten how to do them
Yet looking around at times, I wonder just how many people accept that we have problems when we are not in our comfort zone, or as some may call it our safety zone.
This zone takes in things like new routines, which allow us to carry on with life, in a way that does not involved our carers or family members watching every move we make. These routines take in everything we do from getting out of bed in the morning to going back to bed at night, and include many things from medication to hygiene.
This takes in things like noise, having our own space, our own privacy, routines and respect from others, because without respect everything is doomed to failure.
If it’s too noisy then it causes untold stress to those with the illness, and this must be looked at in all situations these days. How often do we go out and get loud music blasting out at us from all directions, and this is something basic which can cause people to feel as if they don’t want to be there. Yet noise causes distractions.
The routine usually takes in things like hygiene, medication and any daily chore we have to get through, and it starts when I get up and ends when I get back into bed, and nothing must get in the way, either telephone calls or visitors, otherwise it all goes pear shaped.
I don’t sleep particularly well and some nights have very bad dreams or night mares, and therefore don’t really go into a deep sleep until around 4-5 am each day. This is the original reason that I wrote to the Bishop, so you may understand the problems.
This causes a lot of problems through the day as I can be extremely tired, but it has been known for me to go dead to the world after lunch, and in that time the telephone and everything else are ignored as I don’t always hear them.
Yet some say we should not be allowed to sleep during the day as its bad for us, if only they knew.
I now need time to think about questions before answering, yet at times we are not allowed to think carefully about what was said, and sometimes the person asking the question will start to answer for us, which to me shows lack of respect. It is the view of many with this illness that many people in authority think that they know all of the answers, but do they really.
As one leading professor in dementia once said, it never fails to amaze him that he learns something new each time he has a clinic, as there are over 120 variations, and to me that took guts to actually come out with that
Some things are still a struggle like reading, as many books, are written in small print sizes, like bibles, and there are not too many places which sell large print versions.
I lost the ability to understand messages and e-mails, which was distressing, as I used to write reports at work yet how many people would understand my dilemma.
So when I write things like my blog about living with Lewy Body Dementia, I have to write it out and check it for spellings when I remember?, I say that because I don’t always remember, but then I know from many other peoples e-mails that they don’t either so I am not alone. But I don’t always recognise the obvious mistakes, so I tend to write something out and then go back after a day or so and check it again, in the hope that I see any mistakes.
There are times when I cannot use the computer keyboard, so now in the bad days, I use voice activated software which is very helpful. My old blog was lost one day when I tried to correct some problems and pressed the wrong button, it had been read in 86 countries by around 11,000 readers, so last November I head the choice of leaving well alone or starting again and I chose the latter, as it gave me so much pleasure. Luckily for me many of the readers have found the new blog
But we have to use anything available to get us through the day, even though many in society think it is bad for use to use assistive technology, because it’s against our civil liberties, they simply don’t understand that we lost our civil liberties from the day we were diagnosed. So as far as I am concerned, if it’s helpful, use it.
Many of us still cling on to our past-times and hobbies it they are safe to do. I love photography although it does not always go the way I would like, but as a dear friend in Scotland once told me, he takes photographs where ever he goes and had them in galleries, but sometimes they came out wrong, but he was told that for some reason those with neurological illness see things from a different angle and the results can be remarkable. So I never give up, even though it means using more assistive technology to get me through. Many people love things like dancing etc., and they must be allowed to carry on with these hobbies.
However we all hang on to one thing and that is hope for the future. Many of us, live in hope that the medication, we may be taking may help improve our condition or even cure us. Many like myself have prayed for a cure, and this helps us to hang on to our beliefs
Finding hope is a means of coping with this illness, and what is happening to our lives, and professionals need to be aware that even when hope is unrealistic, people must find their own way to make their own meaning.
However there are many misconceptions about Dementia.
This illness is age related? So what about the thousands of people under the age of 65 who have a diagnosis of dementia
People with dementia cannot speak, or take an active part?
People with dementia are unable to get involved
How wrong can they be, and perhaps this is why many places, care homes, religious places, etc. are not encouraged to make things easier for us to get involved
Please remember that these people may not say a lot, but their actions speak volumes.
I always remember seeing people with Alzheimer’s disease at meetings, they rarely said much, perhaps due to pressure of getting things right in their minds.
But their actions did all of the answering, either by nodding, smiling or giving thumbs up in agreement, or shaking their heads or hands when they disagreed.
They still had feelings, ideas, of what was happening, and what is more they still have a sense of purpose and the meaning of life, along with that small word with a big meaning
“HOPE”
This has always stuck in my memory, and proved that they knew exactly what was being said, even though they could not speak.

Along with the fact that we all need to be treated with dignity and respect, the same dignity and respect that everyone else takes for granted
Each day is a challenge and usually vastly different to the day before, but we must carry on as we are passed the point of no return.
Thank you so much for asking me to attend today

Dementia and Spirituality

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I confess that to write this took 6 weeks of hard work, and around 5 versions were written before I succeeded.
Later I was asked to make this public, simply because it was written by someone with the illness and not an academic, so after a lot of thought, I put it on my blog, which is read world-wide. I was then contacted by three American Clinical Teaching Universities to see if they could have permission to use it, and I accepted. It’s now also used in a Paris University as well as a Hospital in the Philippines. I also know that it’s used in certain places in the UK as a teaching tool.
So for a person who’s brain is going AWOL, I am doing my best to raise awareness of our problems and I will try to do more if I can, although my writing skills are disappearing faster than I want .


This blog now has around 15-000 readers in over 102 countries, simply amazing, when I started to write it as an daily online diary, and did not expect anyone else to be reading it, so this was a shock to the system. What is more I get daily comments from around the world.
These days I do put interesting news items on the blog to see if it generates interest in other countries.
Dementia and the spiritual needs of the person with the illness
When I was first approached to do this talk, I had looked at the title quite a few times, as it is a subject which to me is very difficult to put into words, especially when you are living with dementia.
For inspiration I looked on the internet to try to get some answers to a subject which, in some cases causes a lot of upset.
But here we go and I hope I get it right.
Spirituality, leads to a purpose in life, in the things we value, and what is more, gives us all “Hope” as without it we would be lost
It’s not tied to any religious belief or tradition, although culture and beliefs can play a part in spirituality, every person has their own unique experience and journey
However to lay people like myself Spirituality is something which can be difficult to define, and analyse, but it is generally understood to mean, feelings or beliefs related to the search for meaning and purpose in life.
In this day and age it may or may not include a belief in a higher power (such as a god or several gods) or the supernatural world, as each person searches for meaning in life in their own way, but spiritual beliefs, usually bring together ideas about ourselves, our relationship with others and with the world.
Religion is closely linked with spirituality, but the two words mean different things, a person may have an active spiritual life without considering themselves to be religious or being involved with a religious organisation.
When I was first diagnosed as having dementia, I lost my job as an engineer, a job I had held for 30 years, along with my home which went with the job, as I was on call 24 hours a day. Then a few days later my Mother died. At that time, I felt as if I was going to lose everything in life.
Yet something kept me going. My faith and hope for the future
So where do we start
Most people these days are encouraged to write their life story, once they have been diagnosed with dementia, although this is better done in the early stages of the illness. This life story tells the reader whether it is a family member or a member of nursing or care staff, who we are, and where we came from, what we did in life, what we enjoyed Life, including our religions, if in deed we are religious, our hobbies and things we get so much pleasure out of.

For me I love watching nature, I love animals and birds etc, and delight in watching all creatures in world today. However it is vital to find out more about the unique individual who has dementia, and about their preferences, and then find ways in which the person can be spiritually nourished.
My own life story took off and took on epic proportions, as the gates opened and the memories flooded back, usually at times when I could not write them down. But staff and carers may from this, learn that the person loved spending quiet time outdoors, visiting gardens. In this situation, the care provider should work hard to facilitate access, to this type of environment.
Only with time can care staff come to understand what a person is trying to say and to grasp the expressions – so often non-verbal – that have a possible spiritual meaning. This includes encouraging care staff to take an interest in the life story of the person with dementia, and make links to possible spiritual needs.
A good quality of life is something we all cherish.
I used to get a lot of pleasure going to church until this illness started, then I found that I could not remember the Lord’s Prayer, something which was horrifying at the time. So I changed services at the church where we lived in Oxford, as it was much quieter, which allowed me to think, and it was more personal
When we moved back to the North East, I was given medication which allowed me to think a bit clearer, and after a while I started to remember most of the words, which was marvelous, until I started to go back to the church I was brought up in.
It was then that I realised that the words I had learnt, bore no resemblance to the service, as they used a different format at each service, and what was worse, was the fact that they had started to sing it rather than say it.
My main problem was that I had lost the ability to sing and read words when I was in church etc., and I also had problems singing hymns and psalms, as I took time to remember the tune, but could not tie the tunes to the words, and even today I still struggle.
Yet each service was vastly different and there seemed to be so many variations of things like the Lord’s Prayer that I started to wonder what was going on, and this was making my life difficult to keep up with.
I also have problems with my hearing which at times is acute, and this meant that I could hear other people talking most of the way through the service when I was trying to concentrate, so I was missing large parts of the service.
Not so many years ago, people would have had more respect and would have remained quiet, so that others could hear what was going on. But that is now gone and no matter where you are, there is always someone else trying to get their point across, rather than let people listen to the speaker. These days life is made harder by the mobile phones, which always seem to go off when you are thinking
I have also lost the ability to understand messages and e-mails, which was distressing, yet how many people would understand my dilemma.
We also see so many variations of each copy of books like the bible, many written in modern day language.
I do feel that many religions including our Church which is the "Church of England” are trying hard to attract youngsters into the church without much success, as they are not really interested, or don’t stay interested for long.
Yet the people who were the mainstay, in as much as they went regularly and paid more than their fair share of the church income, were being side-lined and in many cases forgotten. They are the elderly and those with neurological illness. However I do feel that churches etc., should take on board that, the older generation were taught these forms of service when we were young, and these constant changes help no one.
They say that those in the care homes don't sing or say their prayers so why bother? So when these priests go to care homes, they find that those with memory problems do not know the words and loose interest?
I have even heard of priests, who were not very interested in taking services in care homes, because they thought it was a complete waste of their time and money.
So do these people really know why people with dementia and memory problems, are in care homes, and what is more important do they understand the basics of our illness.
I did think this was because they had forgotten one major factor, and that is people, as they get older and those with early onset dementia, remember the services they were taught either in church, chapel or at school assemblies.
They should also remember that we don’t want long winded sermons, because we all lose interest, but make it short and to the point, and use the scriptures where needed.
As our old Canon used to say, if you cannot get your sermon through clearly to the congregation in 10 Minutes, in a way they can understand it, give it up as you don’t know what you are doing.
Use old well known hymns etc., which allow people with the illness to take an active part.
However one day in sheer desperation I sat down, and after many days, I had written a letter to a Bishop explaining the problems associated with neurological illness and changes to church services, included also was my problem of sleep patterns.
I did this because I was misguided enough to believe that a Bishop would be sympathetic and understanding, but what I shock I got when I got his response. He more or less told me to get up on a Sunday morning, and go to 8am Communion, where they used the King James Version of the prayer book, and I would have no further problems.
He obviously did not take on board that I have sleep problems with very graphic and distressing nightmares which can go on for over an hour and some nights more, and then usually go into a deep sleep around 5am
This made me understand that many in society do not understand dementia so we must make allowances for them even though it can be hurtful, but through perseverance we will educate them all about the illness in time
I had been a Christian all of my life with a strong belief, although I was not a regular attender at church because I was on call 24 hours a day, and did not want the pager to go off in the service.
But life as we know it changes when you get this diagnosis
When a person receives a diagnosis of dementia their spiritual and religious beliefs may be shaken or even lost, as the person asks, ‘why me’, what have I done to deserve this illness, and care providers should be alert to this possibility, and they should make contact with the spiritual and religious leaders within their community should the need arise.
On the other hand some people with dementia and their carers may develop a new or renewed interest in faith and religious practices, when they are faced with crisis.
Hope can bring meaning in a person’s life and help them face difficult times without despair. It is future orientated, and experiencing hope, provides strength to cope with painful and stressful events, such as receiving a diagnosis of dementia.
Many of us, live in hope that the medication, we may be taking may help improve our condition or even cure us. Many like myself have prayed for a cure, and this helps us to hang on to our beliefs
Finding hope is a means of coping with this illness, and what is happening to our lives, and professionals need to be aware that even when hope is unrealistic, people must find their own way to make their own meaning.
However not everyone can speak, so we have to make allowances for everyone.
Most people with this illness also feel very isolated and alone at times, even when we have family around us, but this is because we cannot explain ourselves at times, or get the right words out and this is distressing.
Sometimes my brain goes blank and I cannot think about anything clearly.
Sometimes the words just flow but in the wrong order, and that puts a different meaning on what we were trying to say.
Some people like myself panic when being asked a question on the spur of the moment, and the wrong words flow.
I was once accused of being angry once when I was asked a question, but that was totally wrong. I just went into panic mode and said what I thought was right, but I was wrong.
So please allow us time to think slowly before answering your questions, and never answer your own questions, as that is very rude and patronising.
However there are many misconceptions about Dementia.
This illness is age related? So what about the thousands of people under the age of 65 who have a diagnosis of dementia
There well over 16-000 people under the age of 65 who have this illness, some in their 30s.
People with dementia cannot speak, or take an active part?
People with dementia are unable to get involved
All things which help keep the horrible stigma, which is attached to dementia alive.
How wrong can they be, and perhaps this is why many places, care homes, religious places, etc. are not encouraged to make things easier for us to get involved
Please remember that these people may not say a lot, but their actions speak volumes.
I always remember seeing people with Alzheimer’s disease at meetings, they rarely said much, perhaps due to pressure of getting things right in their minds.
In some cases their wives spoke up for them, without thinking and allowing the person time to speak for themselves.
But their actions did all of the answering, either nodding, smiling or giving a thumbs up in agreement, or shaking their heads or hands when they disagreed.
They still had feelings, ideas, of what was happening, and what is more they still have a sense of purpose and the meaning of life, along with that small word with a big meaning
“HOPE”
This has always stuck in my memory, and proved that they knew exactly what was being said, even though they could not speak.

Memory and chest problems

I have struggled with memory problems for years, and it's been very difficult at times as I do not remember much about my job.

These days I also struggle with chest problems and I am waiting for a full diagnosis.

Last year I was told by a radiologist that I had Chronic Obstructive Pumonary Disease, but after seeing a Chest consultant, I was told that it was Bronchiectasis, which is another long term lung illness that is incurrable these days

I never got any help or support for this, until I saw a pulmonary nurse recently at our doctors surgery, and I got referred into the Respiratory System in our local NHS hospital

Living with these illnesses can be hard especially when there is no support or help available, but my answer is to keep pushing in the hope that something will happen.

I was ill with chest problems when I was a child, and then I kept getting recurring chest infections which was distressing and caused problems at work.
I was then diagnosed as having industrial asthma, but it now appears that this was all linked in together

But it seems that if you are referred properly, you then get into the system, and you are checked on a regular basis. Your medication is also checked to make sure that it's the right medication for your condition.
There is a lot of information on the British Lung Foundation website and they do have local groups where people can get support and advice on how to keep fit etc

But I have always tried to remain as fit as possible because I knew it would help me to stay as healthy as I could even though I am restricted by my chest problems.

I think it's very important to look after yourself as much as possible, and to seek for support where and wherever you can.

Never give up

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