We live in an age where Dementia is being moved forward into a new era, or so we hope.
This illness has lived in the shadows for far too long and it’s time to bring it back into the new age, removing the stigma and all of the other baggage that goes with it, and providing proper training for all working in the Dementia Care field, whether it is volunteers or professionals.
To do this we must ensure that all staff and volunteers are trained to understand what the illness is, and how to care for those unfortunate enough to have it.
If we are lucky enough to be diagnosed at an early stage, we may well want to carry on enjoying our independence and freedom without being told what to do and without others following us round all of the time, and if this means using assistive technology so be it. I have heard many people say that its wrong for people with dementia, to be using assistive technology.
But why is it so wrong for us to use it when everyone else uses it on a daily basis and many people cannot be parted from it for one moment.
Many of us have hobbies that we enjoy doing, and we should be encouraged to carry on with these while we can.
It may not be easy looking after someone with the illness, no matter what stage the illness is at, but it’s hard for those who have it, as life is changing into something we don’t want or recognise, let alone like.
There are also many people who refuse to accept the diagnosis if they are lucky enough to get one, and carry on as if it’s everyone else who has problems
It’s not just understanding the daily needs of someone with this illness, our 24 hour needs, and sometimes the night time problems can be horrific when you have nightmares and dreams, from hell, and there is no way of getting away from them.
We have spoken to many people in the last few years who have been undergoing training in the medical field from Doctors, Nurses and care staff, and they all come out with the same thing, we are all vastly under trained to understand this illness.
So where do we start.
People with dementia often feel vulnerable as their condition progresses and they increasingly rely on other people to do things for them.
It’s not just our hobbies and past times which change it’s our way of life, what we do, what we see or say.
Caring for a pet cat or dog, can bring a lot of pleasure to some people, or if you are like a dear friend of mine and myself, tropical fish can help in many ways. I know that you can’t take them for a walk, but watching them and looking after them is a tonic at times.
If the person you care for was very sociable and outgoing or if they have a large family, they may really enjoy visits from one or two family members or friends. Remember, they may struggle to keep up with conversations if they have a lot of visitors at the same time.
We have to treat everyone with Dignity and respect, the same respect that you would expect from others.
Treating people with Dignity and respect is something that is very easy to do, yet it is ignored because many people working in the caring society think that they know better than we do, a common mistake because whether you like it or not we still have ears and a voice and can say things at times without support.
I also feel that we should start this by education children, who are asking questions about their grandparents etc. who may have the illness, then move on to making sure that all in the medical field, care homes and voluntary sector are adequately trained. In fact anyone who comes in to contact with people, who are unfortunate enough to have this illness, should be trained to understand it.
I remember going to a local doctors surgery to talk about the illness alongside a branch manager from the Alzheimer’s Society” in the days when the Society had such things locally” and we were both of the opinion that it was a complete and utter waste of time. Only two out of around 12 people were interested, and both were from the Far East.
The rest were slumped down in their chairs, looking as if they were totally bored, yet it was well known then that Dementia figures would rocket in the next few years.
We were at a Young Doctors Training Event in London giving a talk, and after we had finished we were told by a young trainee doctor, that he had learnt more in half an hour than he had at his training lectures, because it can from people with the knowledge of the illness, and not a text book lecture. The very same thing happened at a University where social workers were being trained, so I have to ask why this lecturer’s rely on text books which talk about basic dementia, when there is in theory no such thing.
There is no way you can lecture on this illness, in the time allowed, possibly 10 hours if you are lucky, because this illness, covers such a vast field.
There may well be less than 10 known types of dementia, but there are well over 120 variations of the illness. Which means that we will go down a different route, with different symptoms and needs to the next person.
I have a friend with Lewy Body dementia, and we are both vastly different even though he frequently says otherwise.
I cannot quote chapter and verse like him, as I struggle at times to remember what I did earlier or the day before. I need time t take on board what has been said before I can come up with the correct answer.
This can be stressful at times, and can at times end up with things coming out the wrong way, which is embarrassing and distressing, especially if those around pick it up the wrong way and do not make allowances for the illness.
So with this in mind we simply cannot train people to understand the illness, and expect one size to fit all, it just cannot work, and will not work because we are all vastly different individuals.
Dementia care should by a specialist course on its own, and everyone who is going to work in this field should have recognised training, not just in what the illness is but how they can understand it, and what our needs may be.
Many people write their own life stories in the hope that when we go into hospital or care this can be used by staff to understand who we are and what we enjoy doing. In this way these same staff members may learn about us and then with luck, they will treat us with the dignity and respect that they would expect from others.
Its also a very important document as it is there for our families when we have gone, so they can understand more about who we were and what we possibly did.
I was once in the sad position when a trainee worker came to our home, and they really did not have a clue about the illness, she obviously thought that all people with dementia were deaf and stupid.
Because she came right up to my face and shouted. I don’t know how I did not slap her because like it or not she had come into my safety zone and done something that frightened me completely. Like many with this illness, I am not violent, by when someone startles us like that it gets the wrong reaction, and we will get the blame.