Dementia care is led these days by professionals from various backgrounds, all with vastly different ideas, as to what is needed as far as carers and people with dementia are concerned.
Yet I do wonder whether they actually ask those with the illness what they really want, or do they as we all know, just take it for granted that they know best, something that is well wide of the mark
I get tired of hearing these people say, that we need this or that, when in many cases it’s all down to what they want themselves and not people with the illness.
We have to fit into their, one size fits all group, and if we don't then they say we are being stubborn or awkward.
I know that if they bothered to ask us, the people with dementia, they would get a different answer all together.
I do feel that their ideas are being pushed on to us because they cost less, and take up less time
Dementia care these days is big money, but the money does not go into the care or staff training, it goes on the shareholders, and that to me is so very wrong because many of these people simply don't care what service they are providing, as long as they get some money coming in, and in this case, it’s at the expense of those with dementia.
It annoys me in the first place, that many don't even bother to ensure their staff are properly trained, to cope with dementia patients, but this is for two reasons as I have been told on many occasions.
One is that it’s not mandatory to train carer staff, as far as this Government or the last was concerned.
The second is that many care providers think that it’s up to the staff themselves, to get trained in their own time. I do admit that one or two good carer providers actually train their staff on site, or allow staff to study in their breaks, by using the business computers.
But as far as many are concerned, this is simply because they don't want to waste the company’s money on training staff, when it could all go to shareholders.
However I do think that many companies would learn a lot, if they asked people with the illness to go in to speak to their staff, as I found out a few years ago.
This is because they then learn more about the illness first hand rather than reading old out of date textbooks, which imply that we all just sit in a chair and don't do anything but watch television all day.
That may well be fine in the mid to later stages, but in many cases people need inspiring, and that again comes with good quality training and experience.
However there are many misconceptions about Dementia.
That 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
These are all things which help keep this 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 or family spoke up for them, without thinking and allowing the person time to speak for themselves.
But their actions did all of the answering, 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.
A good quality of life is something we all cherish, and this should be encouraged among those who have this illness, and those who care for us.
These are just a few of the basic things we know about this illness, and if we the people with the illness can see it, why can't the professional’s, or is it they simply don't care.
I was once at a meeting where a high profile professor in dementia once said to everyone.
That no matter how many clinics’ he attends, he always learns something else knew about the illness.
This made me realise that at least one person was honest enough, to admit that he did not know everything about the illness and was willing to learn as he went
Whenever I do a talk, I always get care home staff coming up to me afterwards saying, we did not know that people with dementia could talk.
Do they really believe that, or is it that people with dementia are ignored and treated as if they are stupid by many care home owners.
Yes we have an illness, but we are every bit as good as those professionals, who think they know it all.
So if you really want to know what it’s like living with dementia, ask a person with it and don't assume that you know better, because you could be very wrong.
Even people with dementia can carry on new learning things, if they are given the chance and encouragement to do so. But it’s all down to the professionals and Care staff and their quality training.
I also think that governments could learn a lot about this illness, if they had people with the illness at meetings, and they listening to what they said, rather than the professionals and commissioners of services, who at the end of the day are just doing exactly what they want, no matter what is needed by others
No matter which way we look at this the professional are those living with the illness, as they know exactly what life is like, and also what they want to allow them to live a life in better conditions