Dementia and NHS Continuing Care
Discussion
My Grandmother is 92 and has for some time been steadily succumbing to dementia. This has recently accelerated (within a couple of months) to the point that she can no longer look after herself. She takes a couple of medications but nothing particularly serious and otherwise she's healthy.
For the past 25 years since being widowed she's rattled around a large town house on her own, with family visiting regularly.
It all came to a head over Christmas with a realisation that she's no longer coping on her own. In the very short term my Mother is taking some time off work to look after her. Social Services and the GP have done assessments and the Memory Clinic have been out and referred for a CT scan and psychiatrist consultation. The current indication is that it's likely to be vascular dementia at a reasonably late stage.
It's looking very much like staying at home isn't an option. She has pensions of about £400 net per week but very little in the way of savings (due to a grandson who was supposed to look after her pocketing £150 a week for himself...). The house has been valued at around £450k.
Grandma is borderline in terms or capacity and we've set the ball rolling on a Lasting Power of Attorney, but at present we don't know if she's too far gone to allow it.
A residential home with a specialist dementia unit comes to about £800-£900 per week. If my Grandmother qualifies for NHS Continuing Care, she'll have that paid for by the NHS. If she doesn't, it will have to come out of her pockets and the house will have to be sold ASAP. If that's what has to happen, then that's what has to happen, though if the NHS can fund all or part of the care it will be a godsend.
Has anyone here experienced getting Continuing Care on the NHS for someone with Dementia?
For the past 25 years since being widowed she's rattled around a large town house on her own, with family visiting regularly.
It all came to a head over Christmas with a realisation that she's no longer coping on her own. In the very short term my Mother is taking some time off work to look after her. Social Services and the GP have done assessments and the Memory Clinic have been out and referred for a CT scan and psychiatrist consultation. The current indication is that it's likely to be vascular dementia at a reasonably late stage.
It's looking very much like staying at home isn't an option. She has pensions of about £400 net per week but very little in the way of savings (due to a grandson who was supposed to look after her pocketing £150 a week for himself...). The house has been valued at around £450k.
Grandma is borderline in terms or capacity and we've set the ball rolling on a Lasting Power of Attorney, but at present we don't know if she's too far gone to allow it.
A residential home with a specialist dementia unit comes to about £800-£900 per week. If my Grandmother qualifies for NHS Continuing Care, she'll have that paid for by the NHS. If she doesn't, it will have to come out of her pockets and the house will have to be sold ASAP. If that's what has to happen, then that's what has to happen, though if the NHS can fund all or part of the care it will be a godsend.
Has anyone here experienced getting Continuing Care on the NHS for someone with Dementia?
My Mum was succumbing to dementia in the usual progressive manner. She hated care homes so we established her in a flat, complete with visiting carers, modifications to suit her disablement, and her beloved little dog.
She had 16 months of 'freedom' but she became so frail and confused, a placement in a home became essential. I'd developed serious back problems, so caring for her had become very difficult indeed.
I applied for continuing care with the NHS, pointing out that CC would cost them less than the repeated emergency visits and admissions. Mistaken use of medicines, falls or imaginary assaults were typical.
For the care home placement, an assessment was necessary. They put Mum through three but wouldn't offer nursing care. Equally, the CC assessment resulted in a no...or a string of negatives.
Mum lasted less than a fortnight in the care home. When I last visited, I found her tucked away in the upstairs lounge. There was a cold cup of tea and untouched sandwiches next to her and she was unconscious. I called the doc on my mobile...Mum was admitted to hospital and died 48 hours later.
Long story short: I had reassessments, tribunals, input from the NHS ombusdman, etc. The bottom lines were...
To receive NHS CC, the applicant has to be close to death.
The care home can do no wrong.
This was my experience. It may not become yours but simplicity and success may be far from applicable words.
She had 16 months of 'freedom' but she became so frail and confused, a placement in a home became essential. I'd developed serious back problems, so caring for her had become very difficult indeed.
I applied for continuing care with the NHS, pointing out that CC would cost them less than the repeated emergency visits and admissions. Mistaken use of medicines, falls or imaginary assaults were typical.
For the care home placement, an assessment was necessary. They put Mum through three but wouldn't offer nursing care. Equally, the CC assessment resulted in a no...or a string of negatives.
Mum lasted less than a fortnight in the care home. When I last visited, I found her tucked away in the upstairs lounge. There was a cold cup of tea and untouched sandwiches next to her and she was unconscious. I called the doc on my mobile...Mum was admitted to hospital and died 48 hours later.
Long story short: I had reassessments, tribunals, input from the NHS ombusdman, etc. The bottom lines were...
To receive NHS CC, the applicant has to be close to death.
The care home can do no wrong.
This was my experience. It may not become yours but simplicity and success may be far from applicable words.
My experience is much the same... My dad had cancer/diabetes/angina and had 4 heart attacks but eventually went into a home after his memory and behaviour were roomy h for mum to cope with.
Even after he was sectioned under the mha after he smashed his room up and got violent, we still had to almost force the social worker to apply for chc funding. It was only due to the extreme dementia/violence in combination with the other health conditions that he was granted funding about 9weeks before he passed away.
My mum is now in a home with terminal cancer and has just been rejected funding even though she's only 63.
It does seem that they are only willing to grant funding when you are literally about to pass away, and its very unlikely that dementia on its own will be enough for her to pass the tick-box farce of an application process.
Your best bet at present is to make sure that she has contact with a social worker, local district nurse and get as much help with the application as poss before she goes into a home.
I'm not sure on what/how far the social funding side of things (which is means tested) can take into account the value of a house.. ie if she's got no savings and wants to receive care in her own home, can they force her to sell it? Or I guess they rack up the bill that's secured against the home at a later date?
Either way, good luck with it all, and irrespective of money, talk to your local district nurse about which home is actually best for dementia care. Many say that they cater for it but lack the trained nurses that really make a difference to someone.
Even after he was sectioned under the mha after he smashed his room up and got violent, we still had to almost force the social worker to apply for chc funding. It was only due to the extreme dementia/violence in combination with the other health conditions that he was granted funding about 9weeks before he passed away.
My mum is now in a home with terminal cancer and has just been rejected funding even though she's only 63.
It does seem that they are only willing to grant funding when you are literally about to pass away, and its very unlikely that dementia on its own will be enough for her to pass the tick-box farce of an application process.
Your best bet at present is to make sure that she has contact with a social worker, local district nurse and get as much help with the application as poss before she goes into a home.
I'm not sure on what/how far the social funding side of things (which is means tested) can take into account the value of a house.. ie if she's got no savings and wants to receive care in her own home, can they force her to sell it? Or I guess they rack up the bill that's secured against the home at a later date?
Either way, good luck with it all, and irrespective of money, talk to your local district nurse about which home is actually best for dementia care. Many say that they cater for it but lack the trained nurses that really make a difference to someone.
Thanks for the replies, unfortunately I fear the NHS will try to avoid having to fund care if they can, perhaps understandably when you consider the cost. It seems like dementia falls between two stools, in that it's a disease that requires a form of nursing, though due to being in the mind and irreversible it doesn't require medical attention.
At her Memory Clinic test last week my Grandmother scored only 51% and, prior to CT scan confirmation, it's believed she has vascular dementia. She was s
t hot on then mathematical questions, then couldn't draw a clock face or tell whether it was summer or winter (despite there being snow on the ground outside).
Today she's been taken into hospital with an infection.
Awful to say it, but at 92 she's had a long and productive life (she was on the national executive board of the Royal Air Force Association and worked beyond her 70s), I hope she doesn't have to endure a long and slow fall into mental obscurity.
At her Memory Clinic test last week my Grandmother scored only 51% and, prior to CT scan confirmation, it's believed she has vascular dementia. She was s
t hot on then mathematical questions, then couldn't draw a clock face or tell whether it was summer or winter (despite there being snow on the ground outside).Today she's been taken into hospital with an infection.
Awful to say it, but at 92 she's had a long and productive life (she was on the national executive board of the Royal Air Force Association and worked beyond her 70s), I hope she doesn't have to endure a long and slow fall into mental obscurity.
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