BBC Panorama - what’s the human cost of dementia care?

AliceA

Registered User
May 27, 2016
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We can dream (it's about all we can do)!

The only non-profit-making CH I know of round here is about £550 a week, I viewed it and it wasn't brilliant. It didn't have a reliable locked door policy - the manager cheerfully told me about one resident who wandered off and got a train to Birmingham. And they only wanted early-stage easy residents, a resident who sundowned (pacing, asking to go home) was asked to leave within a fortnight. Wouldn't have worked at all for my mother.

This is the trouble too, lack of training and not really wanting the harder cases.
 

AliceA

Registered User
May 27, 2016
2,911
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Governments will always ignore as far as they can the situation of carers because to do otherwise will cost them buckets of money. They know that they can rely on carers to plug on for little recompense so it is inevitable that they will continue to exploit them.

Unfortunately, we can't go on strike and it doesn't seem to matter how many letters we write, how many emails we send, governments will continue to have no sympathy for people like us.

We are held over a barrel! Where did that saying come from? Now my phone has died, I am not sure why, new battery, it was charged, it has been one of those days, hope yours is better. X
 

myss

Registered User
Jan 14, 2018
449
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... it ended up with an advocate being appointed for my husband who decided that my husband wanted to come back to his home town, she has nodementia training and doesn’t know what dementia sufferers talk about going home means. It went to the COP and the judge in his wisdom decided, after he saw my husband and he sang singing in the rain to to him and asked the judge if he’d like to go for a pint, that he should be moved.
I personally feel this is part of the problem in that those in charge of making decisions on care underestimate the behaviours and the caring needs of dementia, especially as the number of those suffering from this illness appear to be on the rise. I believe this is the reason why the dementia nurse services in my area were cut 3 years ago, and led to the decision to employ cheaper/younger staff with no/less experience instead. It's now been realised that it didn't work as knowledge is key. I was told this by a re-employed experienced dementia nurse.

It was good to see a 'challenging' person with dementia for once. The old lady's constant anxiety and need for 24/7 care was clear. How her poor daughter copes is beyond me, though she was clearly struggling.

One thing that really wasn't covered was people who are self-funding - how we are just left to 'get on with it' and organise everything ourselves.

A particular bugbear of mine (again not mentioned) is the fact that most care homes will not accept the very basic LA limit requiring family to pay a top-up (not mentioned) but it also means they (the care homes) have to claw back the shortfall by charging more to self funders. My mum's care home does accept some LA residents for which they are paid around £570 per week. Mum, in an identical room, pays nearly £800 per week. THIS IS TOTALLY UNFAIR!
So agree with this post - especially the parts I highlighted. I so welcomed the first scenes with Rachel and her mum Barbara, especially with the car. I've heard some say such scenes may not be shown on TV as it might scare others. I don't watch a programme about care/dementia to be entertained. It's real life, it can happen. I wish I seen something like that when my dad was first diagnosed.

With regards to the varying figures for care home placements, I can perhaps understand the higher figure being due to extras requested by the person being cared for or their family/loved ones, but where the only difference being where the money is coming from is - as said - so unfair.

There was another duo where dementia has impacted their lives - Michael and his partner/carer Barbara. Michael also had encephalitis. I'm wondering if I got this wrong but I think it was stated that Barbara receives £470 per week for his care and said it wasn't enough. I wish she or the programme made it clear why she felt that way because, to a lot of people watching, that figure sounds pretty high and Barbara appears to receive practical help five days a week.

Maybe that figure included welfare benefits too and therefore included Michael's everyday needs like food, heat, water, etc, but I thought the figure quoted as for 'his care'.