I have a wonderful novel idea

[Kathphlox]

Why not ask carers of dementia sufferers to help train the professionals.. haha you might say..... but seriously, the professionals obviously need more help in some areas.. and where do they get that very detailed information... straight from the horses mouth.. us! The people who actually do this job 24/7.. they are novices.. don't you agree?

[ggma]

i agree that with any form of disability or disabling illness only the people experiencing what it is actually like can really describe and get across how it feels and what they need to help them. It is the same for carers, the message of what it is like to cope needs to be delivered direct!

I did attend a series of workshops which were well attended by local health and social care professionals, where we were asked to share our experiences of caring for someone with dementia, and the local dementia plan was suposed to be created from the work done. I am not sure how much impact it has had longer term, at the time people were very receptive.

[Bedelia]

See my post of yesterday re new Skills for Care guide for care workers, which has been moved to Resources. I was part of a focus group this spring at Dementia UK, who did exactly that, Kathphlox.

Here's the link again to download the guide:

http://www.dementiauk.org/assets/fil...and_carers.pdf

[zeeeb]

Unfortunately caring is like many other jobs. some people love what they do and do it very very well. and some people do it, because they have to work to pay the bills. Unfortunately demand for care workers will always be high, and pay will always be too low to attract and retain alot of people who may excel at the job. I'm mean, lets be honest, you can't pay someone enough for having to deal with some of the things carers (and nurses) have to deal with.

So, there will always be the the good and the not so good. For many people who need a job, this is a field where the work will never dry up. So many people who probably don't have a particular passion for the work, are still going to work in the industry.

No amount of training is going to fix an industry of people who are over worked, underpaid and doing one of the less glamourous jobs in the world. You can't pay people to work with care, empathy and compassion, they either do it or they don't.

I'm in Australia, so i know it's different, but it's still the same. i have a friend who works in a hospital kitchen (not as a chef, just as an unskilled kitchen hand), she very compassionate, great with old people, can talk to people very well, she is very well suited to aged care. she has a passion for this kind of work, she done the courses, and really liked the idea of working in the field after doing her practical parts of the course. She was offered a job, but it was considerably lower paid than her job in the kitchen, so she's still working in the kitchen. This is very typical.

[Kathphlox]

See my post of yesterday re new Skills for Care guide for care workers, which has been moved to Resources. I was part of a focus group this spring at Dementia UK, who did exactly that, Kathphlox.

Here's the link again to download the guide:

http://www.dementiauk.org/assets/fil...and_carers.pdf

That's an excellent guide Bedelia, thanks for the link

[Bedelia]

Glad you think it may be of help (though of course aimed primarily at care workers). Please share to anyone who may be interested.

[nicoise]

Dear Kathphlox,

Yes, a good idea indeed.

My daughter is a trainee nurse, and her best course in dementia came from her personal experience with her granny, not via her nursing training unfortunately. The insight, understanding, tolerance and compassion generally only comes with a close exposure to a sufferer, I feel.....

[Kathphlox]

Dear Kathphlox,

Yes, a good idea indeed.

My daughter is a trainee nurse, and her best course in dementia came from her personal experience with her granny, not via her nursing training unfortunately. The insight, understanding, tolerance and compassion generally only comes with a close exposure to a sufferer, I feel.....

You are possibly right nicoise, as carers we see every blink of the eye, every facial expression and we know it like the back of our hand and deal with it, but it's the basic/general stuff that the profession need to be trained in.. understanding how they see things from the sufferers point of view seems to be a priority to me.. like little white lies and such, it's our stock in trade as carers.

[SisterAct]

We had a male nurse in the hospital thank us. He said he had learnt so much more from the way we handled and spoke to Dad than on any of his courses (Plus all the leaflets we used to leave on his table for them to read).

I think all trainee professionals in Social and Nursing care should have a four weeks a year living with someone who has dementia as part of their training and this should be compulsory each year!!
Wow free care and respite for carers.....sounds wonderful......book a holiday.

[sgranger]

Kathphlox
I think this is a fab idea. I know staff at my mum's care home have often made reference to the fact that I know how to 'handle' some of my mum's most challenging behaviour & they have started to use some of my tactics with mum & with other residents. I HAD to develop tactics that made life easier when my mum lived with us for 2 years before going into residential care - and because she is my mum, because I know & love her, & knew & loved her before the Alzheimer's, I was able to use my intuition to develop & work out strategies for the challenges posed by her illness. No-one taught me what to do - it was only by living wth mum & her conditon 24/7 that I learned 'how' to best deal with certain problems & how to 'head' certain behavioural problems off before they get a hold. Paid care staff have a difficult job & really can't be expected to know instinctivey how to deal with everything Alzhiemer's can throw at them - they need in-depth training. And who better to help with such training than those of us who have dealt 24/7 with caring for someone with this condition.
A great idea - the health professionals should make more use of family carers' knowledge & experience to train care staff in dementia-specialist care. I'd love to pass on my knowledge & experience in a more formal way to help with training.

[Haylett]

SisterAct - I really like your idea!!!! Kathphlox - I think what you're suggesting makes perfect sense. Our local Dementia Action Group gained some traction with the SS for a while - then they just stopped sending a representative to meetings and I doubt whether any of the suggestions we made were actioned. In fact, services that were available before, have now been disbanded in a re-allocation of funds. One of our group was also asked to address final year medical students at a local university because there is a general recognition that medicine touches only briefly on dementia and dementia care. The students were fantastic and very receptive to those of us who went to address them - but this too, has been discontinued.

I was also asked to sit on a Management Steering Committee for Dementia together with a couple of other carers - we were encouraged to speak up, but all of us had the feeling that most of the lead clinicians on the committee were tolerating, rather than welcoming, the inclusion of carers! A survey that showed that the incidence of dementia was actually much greater than reported/diagnosed (as carers, we know that) was met with dismay. One of the lead psychiatrists openly spoke against any drive to increase rates of diagnosis because it would impact on his (free) Friday afternoons. When I pointed out that most of the help/support (often, not that much!) that is available to carers is only accessible post diagnosis, it was just swept aside.

Since then, I (and other carers) have offered to advise informally on dementia care in local hospitals and at the local medical centre. The response has either been no reply at all or a polite acknowledgement, then nothing. I think part of the problem lies in the fact that there is so little or poor co-ordination among and between SS, NHS and their various branches.

At Stirling University, there is a determined effort to include carers on dementia care courses that are offered to NHS/SS professionals. Having completed one of their modules, I can say that carer participation is definitely welcomed by tutors and more importantly, by the student professionals.

So it's a bit of a curate's egg - but that's no reason not to try. If carers can manage, I think every effort to "tell it how it is" should be encouraged. Time to infiltrate!!!

[Kathphlox]

SisterAct - I really like your idea!!!! Kathphlox - I think what you're suggesting makes perfect sense. Our local Dementia Action Group gained some traction with the SS for a while - then they just stopped sending a representative to meetings and I doubt whether any of the suggestions we made were actioned. In fact, services that were available before, have now been disbanded in a re-allocation of funds. One of our group was also asked to address final year medical students at a local university because there is a general recognition that medicine touches only briefly on dementia and dementia care. The students were fantastic and very receptive to those of us who went to address them - but this too, has been discontinued.

I was also asked to sit on a Management Steering Committee for Dementia together with a couple of other carers - we were encouraged to speak up, but all of us had the feeling that most of the lead clinicians on the committee were tolerating, rather than welcoming, the inclusion of carers! A survey that showed that the incidence of dementia was actually much greater than reported/diagnosed (as carers, we know that) was met with dismay. One of the lead psychiatrists openly spoke against any drive to increase rates of diagnosis because it would impact on his (free) Friday afternoons. When I pointed out that most of the help/support (often, not that much!) that is available to carers is only accessible post diagnosis, it was just swept aside.

Since then, I (and other carers) have offered to advise informally on dementia care in local hospitals and at the local medical centre. The response has either been no reply at all or a polite acknowledgement, then nothing. I think part of the problem lies in the fact that there is so little or poor co-ordination among and between SS, NHS and their various branches.

At Stirling University, there is a determined effort to include carers on dementia care courses that are offered to NHS/SS professionals. Having completed one of their modules, I can say that carer participation is definitely welcomed by tutors and more importantly, by the student professionals.

So it's a bit of a curate's egg - but that's no reason not to try. If carers can manage, I think every effort to "tell it how it is" should be encouraged. Time to infiltrate!!!

Tell it how it is!!! WE here.. all of us carers know how it IS....

But.. sadly, I'm not up to this battle now. My battle has ended, I will still be here to help where I can every day, but now I have to rebuild my life as best I can.

I wish all you Trojans out there battling in every way for your loved ones.. and yourselves, all the love in the world and strength to get through it and hope you have as good an end as we did.. God bless you Trojan carers Excuse my emotion please.

[Norrms]

Hello my friends, just to say to all those that know me on here that i have been asked by the Devon health authority to advise on training for nurses regarding dementia and after months of campaigning for this i hope to implement the carers to help nurses and vice versa ideas. I will keep you posted how this goes, best wishes, Norrms and family xxxxxxxx

[Ellie315]

When I complained to my care company because they'd promised me trained, qualified, experienced EMI carers and they sent me young, naiive, ignorant girls who had no idea about the disease or what was needed or even how to do what I asked them, the told me.......

..........

wait for it

...........

To train them myself (at my own expense) in my own home.

[Kathphlox]

When I complained to my care company because they'd promised me trained, qualified, experienced EMI carers and they sent me young, naiive, ignorant girls who had no idea about the disease or what was needed or even how to do what I asked them, the told me.......

..........

wait for it

...........

To train them myself (at my own expense) in my own home.

I have done that Ellie, trained them how to do things, it's so annoying

One day they sent a young girl on foot with miles to walk, her job was to empty his catheter leg bag.. uh oh, she didn't know what to do.. I mean.... emptying a catheter bag.. you don't need a degree for that.... as I wasn't available at that time, hubby sent her away.. Later when she turned up again, I was there and showed her how to do it.. It's a disgrace really when you think about it.