Increasing user and carer involvement

Increasing user and carer involvement

This is a priviage to be asked to come here today.

Until I was diagnosed with this illness I confess that I knew very little about it, in fact I had only ever heard of Senile Dementia.

Dementia is one of the worst diseases I have heard of as your life is controlled others and once it takes hold life becomes a roller coaster, when we go from good days to days when even the simplest task can be very hard to work out let alone do. Sometimes a task that has been done many times in life becomes something alien and impossible to do. It also feels as if we losing all control, and I know from my own experience that I actually felt as if I was slowly going mad, because I could not understand what was happing to me.

I had been a University College Engineer in Oxford for 28 years, when I realised that something was drastically wrong. In 2001 I had a very bad bout of Viral Pneumonia after which things were never really the same. I had been responsible for all the services including setting up of two budgets, electrical planning, testing, design as well as estimates for the whole of the Building and Maintenance services. After a while things seemed to settle down and then over the Christmas period of that year things went from bad to worse.  All my Electrical training was disappearing fast and I found that I could not understand how to do my estimates any longer, nor could I work out how I had done them in the past. I had to use a Dictaphone at meetings etc. and to be honest I really thought that I was going mad because I could not find the words to explain what was happening.

I had problems remembering my computer codes at work.

I got lost going to work one day. 

When I was diagnosed it came as a slight relief as I then knew what I had to cope with or at least I thought that I did. I was unlucky enough to need two sets of diagnosis because when I was diagnosed first we lived in Oxford, and that was such a shambles that no one could believe what had happened. In the end I had lost my job as a University College Engineer, which I had held for 28 years along with my house, which went with the job.

Then my mother died, and as the family home was empty it was suggested by my brother that we moved back up to the North East. It was then that I needed to be re-diagnosed as the Hospital in Oxford seems to have lost my notes, but lucky for us we had brought a set of letters with us from the Hospital which explained what had tests had been done. The re-diagnosis was done in a more relaxed way and was in many ways less stressful and once this was complete I was offered treatment which had been denied in Oxford. 

After about a year I had regained control over some of my life which was marvellous.   I was very lucky that I realised that having been given this second  Diagnosis in Durham , that I had no alternative but to get on with life in whichever way I could, and I had to get as much as I could out of that remaining time. It was around this time that I fully realised how lucky I was to have been given this medication, as many people had never had the chance of even trying it, and this I found extremely hard to accept.

Yes I know that not all medication works but at least give people the chance of trying it to see.  I felt at this time that there were many cases where money was being openly wasted in the NHS, and I felt that this wastage should be tackled before cutting medication costs like this. The odd thing is that I was told a few months ago that had I have been transferred to the next hospital which specialised in this type of illness, not only would I have been given the medication straight away the chances were that I would have retained my job and would have paid taxes, something that this Government does not seem to want to know about. (This is the Post Code lottery for all its worth.)

The Doctor at Durham gave us another life line by suggesting that we went to our Local Branch of the Alzheimer’s Society where we would get extra help and support, but we never imagined becoming as involved as we did.

It was this time that we realised that a lot of people were missing out on the medication and that really saddened me. This had been  part of the reason that I decided to join the Alzheimer’s Society, because we have to do something to help those who come along after us, we have to try to improve conditions in homes, raise awareness and where possible campaign for and support any improvements in medication.  I also felt that being allowed to work with other people from diverse backgrounds, who have this disease, is in many ways, very interesting and it helps us to feel as if we are still useful. What is more we found that we could work as a team to help others which was brilliant.

I am extremely lucky that I have a very understanding wife who has changed her life style to suite mine.

Life can be hard at times because everything changes so much and sometimes so fast.

No two days are the same; in fact things change quite a lot over a day.

I find that various problems can have serious consequences on so days, and yet another day they have little or no effect.

Reading articles these days causes problems, because I can read the same thing 4 or 5times and see something different each time, each with a different or slightly different meaning.

Sometimes words are difficult to spell or understand.

Noise plays a big part in my life because my hearing has become more acute, and sometimes opening a bag of crisps can sound like an earth quake.

Very bad and vivid nightmares. Sleep patterns have changed. I sleep deeply during the daylight hours and yet at night, I am very restless and wake up quite a lot.

Since my diagnosis something has reversed in my brain because I now find that my left hand is faster than my right, which used to be the other way round.

This causes problems when using a computer keyboard. Even my tastes have changed as I have now got to the stage where I enjoy things that I would never have gone anywhere near to years ago, and that is not that I did not try them. 

Trying to fathom out problems at times varies from day to day, one day it’s easy the next the same problem is impossible to work out.

I find it difficult in crowded areas because I feel as if I am being pulled over when people walk across in front of me; this tends to make me feel unstable.

Escalators cause problems, trying to gauge the speed.

Finding my way around strange rooms and areas can be difficult, especially modern buildings in which rooms, walls and doors are all the same colour and design without breaks.

I sometimes feel very unstable.

As with many people who have Dementia, I can only concentrate for about 2 Hours at a time, after which I get very tired. So people need to know that any meetings that are being planned need be structured to allow for breaks at certain times.

It should also be remember that meetings should be as free of noise as possible.

This is because it is difficult for a person with Dementia to tune into a voice when there are other noises in the background.

We now need more respect and dignity for those with dementia as this can be done very simply.


12 Hints to help you communicate with someone who has dementia:-

Try to stay Calm

Face the person, speak clearly and slowly

Make sure that you have their attention by gently touching their arm and saying their name

Use short simple sentences and say exactly what you mean

Try to get one idea across at a time

Allow plenty of time for the person to take in what you say and to reply

Try not to confuse or embarrass the person by correcting them bluntly

 Use questions which ask for a simple answer

Don’t ask questions which test their memory, e.g., who am I? Or what did you say yesterday.

Talk about familiar people, places and ideas

Use the surnames of the people you are talking about, instead of “he or she”. It will remind the person of who you are talking about.

Use facial expressions and hand gestures to make you understood.


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