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(43 Posts)
Judy54 Wed 31-Jul-19 16:37:27

I cannot understand why Dementia is not classed as a medical condition and that people with this cruel illness have to pay for their care. It appears to be classified as a Social rather than a medical need. There are many frail, elderly people who need social care such as help with washing and dressing, the needs of someone with Dementia are much more complex than this because they have lost their cognitive skills and their care needs are much more demanding.

It seems so callous that they and their carers should be expected to pay for the sufferer's care in some cases using their life savings or having to sell their homes. When someone has a medical condition such as cancer, a stroke or many other recognized illnesses they are least entitled to some financial support why are dementia sufferers being treated so inhumanely?

Bordersgirl57 Wed 31-Jul-19 16:48:50

One reason only I fear - money, or rather the lack of it. If there is to be an ever increasing number of those suffering from dementia, then funding the necessary care will be astronomical.

The same reason social work assessments take months to get - once a care package is recommended then they have to find the money. I agree it is a tragic situation.

GrannySomerset Wed 31-Jul-19 16:54:07

As more of us live longer it is inevitable that there will be an increasing number of sufferers from a variety of forms of dementia, which is why it is important to pressure government to fund research.

I agree that is is very unfair that sufferers are not as well supported as those with other devastating conditions. My DH has Parkinson’s and is increasingly losing his ability to function normally and I don’t see much help out there for the future when I can no longer care for him.

EllanVannin Wed 31-Jul-19 17:05:47

It seems that Dorset has the highest numbers of dementia/alzheimers sufferers in the UK as 28 in every 1,000 had the disease in 2017.

M0nica Wed 31-Jul-19 21:33:00

I think it is for historic reasons, senile decay, as it was called, was seen as a natural part of aging (people died younger, so it was relatively rare) so no more

It has been convenient for governments since then to stick to that view and ignore the research findings of the last 40 years that have shown so clearly that dementia, of all kinds is the result of physical changes caused by specific disease processes.

Having said that - when you consider the cost of caring for all those with dementia, I can see why governments blench at finding all in one go the many £ billions annually to fund this care. It would probably need almost all taxes to rise by 10% in one go.

That would include income tax, VAT, corporation tax and all the others.

Davida1968 Fri 02-Aug-19 10:22:14

This is something that I have been very aware of for some time; my DM has dementia and is in a care home. Dementia UK define dementia as an umbrella term for a range of progressive conditions that affect the brain. How can this not be an illness? GNs posting here are right - it's all about funding.....

dragonfly46 Fri 02-Aug-19 10:27:30

My mum is in care with dementia and I actually have a 57 page report from SS saying that there is no way she could live alone but no offer of support. She pays £1000 a week and had to sell her home.

annsixty Fri 02-Aug-19 11:11:18

My H had dementia, a severe stroke and finally a terminal cancer diagnosis.
We were never even considered for funding although we did get a small contribution from SS .
I am still being asked for the fees due for his last month, for which he was in hospital for 3 weeks and 4 days.

I am contesting it but don't expect to win.

Merseybelle2 Fri 02-Aug-19 13:18:05

My heart goes out to everyone dealing with this. I had a friend developed vascular dementia at 53 and within two years had to move into a care home. Because her family were on benefits and renting a home they had nothing to pay towards care. Two other friends ended up in care homes and both had to sell homes they’d worked hard for all their lives to fund their care. The care homes were both rubbish, staffed with teenagers who were on minimum wage and couldn’t care less about the patients. It’s what we all dread ourselves as we get older. I hope I have the courage to end it myself if I find I’m going down that route.

SueDonim Fri 02-Aug-19 14:08:53

A friend with a particularly difficult form of dementia was placed into a care home. They were unable to keep him safe and returned him to a hospital dementia unit like a lost dog to Battersea Dogs Home.

My friend's wife has now received a bill for the ten days of inadequate care he was given at this so-called care home. She's going to pay it because she cannot face the fight but it's atrocious that having never been a burden to the NHS before, or taken any state benefits, the NHS is definitely not there for him.

It isn't just dementia patients, though. My sister was diagnosed with a terminal brain tumour in February. She was discharged from the hospital consultant, her GP surgery said they didn't provide any services for terminal patients, and the local hospice wouldn't take her because she probably wouldn't die within the week. She ended up in a care home that wasn't altogether caring, worrying about how she was going fund her care if she lived more than six weeks. Sadly, she didn't even reach that six weeks. She died after less than 24 hours of hospice care. And yes, I'm angry. angry

Grannyjacq1 Sat 03-Aug-19 09:12:57

My 95 year old mother was diagnosed with Alzheimers/dementia 2 years ago and was cared for by my 94 year old father, with very little in the way of assistance. In May she was diagnosed with pancreatic cancer too. Since this diagnosis, she has had far better medical support - especially from the hospice nurses. I suppose that, for her cancer, they can at least offer pain relief (and would operate if she was younger). No treatment/cure for dementia, sadly.

NannyWaffles Sat 03-Aug-19 09:22:58

The facts is that it is not the 'condition' that qualifies the person for this type of funding. It's how the condition is affecting the person. For instance not everyone with a cancer diagnosis gets this funding only those whose symptoms are severe enough. The same is true for dementia and all other conditions.

blubber Sat 03-Aug-19 09:32:26

Dementia is a terminal illness and should be funded as such. My late husband's death certificate states dementia as cause of death. He worked from age 15 to 65 and had never had a sick note and, therefore, never needed sick pay. He had dementia for eleven years and I had to pay for his care. After his death I was asked to repay some state pension they said had been overpaid!

NannyWaffles Sat 03-Aug-19 09:35:21

Dementia is a terminal illness and once the symptoms increase to an assessed level then it IS funded as such.

Carolpaint Sat 03-Aug-19 09:49:28

Thank you NannyWaffles, at last. Am getting irritated with these comments re working hard all your lives and having to sell homes, not taking a day of sick blah blah. The NHS is not a bottomless pit of money, nor is Social Services, if you have worked so hard where is the money to pay for your old age? Where are the pensions you should have earned? If anyone bleats about only paying the woman's stamp I will add that as one who paid a full stamp, you that did not, ought not to have an old age pension you did not pay into the pot nor pay the NHS contribution.

sandelf Sat 03-Aug-19 09:54:03

It is medical. Nobody goes into care because they fancy a little rest. The more of us who highlight this - the more motivation for research. Looking after people with various dementias is a huge and profitable industry - so the home and care establishment have a strong interest in there being no progress.

Jacqui1956 Sat 03-Aug-19 09:54:51

I believe that people suffering from dementia can claim careers allowance, attendance allowance and they don’t have to pay council tax. However I agree why should people have to sell their homes to fund social care.
My mum had Alzheimer’s and did eventually have to go into care, all of her state and private pension had to go to help fund that care. Fortunately she had transferred ownership of her house into my name about 10yrs prior to being diagnosed with Alzheimer’s. At the time I did wonder why she did it but she maybe had foresight!

Saggi Sat 03-Aug-19 10:11:47

Wow’ve stirred a hornets nest! I too paid a full stamp for 51 working years....know how you feel ...but still, WOW!

Niucla97 Sat 03-Aug-19 10:21:51

Dementia is a terminal condition currently there is no cure. Fortunately there are many 'terminal' illness where a percentage will be cured. I understand that 75% of patients diagnosed with cancer stand a very good chance of being cured.`

Dementia eventually robs the person living with it of everything.

Cobweb01 Sat 03-Aug-19 10:31:12

My dad had lung cancer and mum dementia and the difference in how they were treated was vast. Don't get me wrong, the actual people were amazing with both of them, but we had to fight so hard to get any help for mum and in the end, when she had to go into a care home, the costs were so high. Dementia was far worse to deal with as we lost mum twice in a way and dad was dad right up to the day before he died.

keffie Sat 03-Aug-19 10:56:04

It is classed as a medical condition. However like any medical condition comes with it cost.

You can claim various benefits with it such as ESA/U.C long term sick plus PIPS/Attendance allowance depending on your age.

Any condition can come under needing extra support and help from social services.

That is where the problem lies which is the cost. The cost of all this care is through the roof. Its complex care and it costs.

My late mom had alzheimer's and we nursed her until we couldnt do it anymore.

The last 8 weeks of her life was spent in nursing which was just as exhausting as we were going in everyday and had still everything to sort.

Unfortunately the need for medical care is not a bottomless pit money wise. I dont have an answer for it either.

The cost of an average nursing is about £1 K a week where we are. So when your'e selling a home to pay for care, the money wont last long. £52 K a year.

Average house where we are £300 K. You then have less than 6 years care money, once sold, and then the state has to take over paying. People can last last donkeys years with dementia.

Nye Bevin can never have imagined how far medical science would go when he created the NHS. That's the price we are paying now for medical advancement which is how do we pay for it

Farawaynanny Sat 03-Aug-19 10:56:33

As an ex district nurse I can understand the concerns. Although those suffering with dementia do have a serious ill ness, their needs are generally to do with needing assistance with daily living which can be provided by carers. Those suffering with cancer, strokes etc also have nursing and medical needs requiring a doctor or qualified nurse, Hence paid for by the NHS.
Right or wrong, this is the way it is so please don’t shoot the messenger!

Annaram1 Sat 03-Aug-19 11:02:58

My husband had Alzheimers for about 4 years and I looked after him at home, and took him out to the shops and to church and even on holiday. He became worse and worse and could be very embarrassing at times.
Eventually he had a stroke at home and was in hospital for nearly 2 years, then transferred to a home. By then he was very ill, could not speak nor understand, could not sit up or stand or eat or drink unassisted. He was also doubly incontinent. I am still getting bills from Social Services asking me for money, which like annesixty I am contesting, but expect to lose. On his death certificate cause of death is given as vascular dementia and stroke.
I noticed on the news yesterday that a new blood test can tell if we will get Alzheimers 20 years in advance. I don't want to know.
Carolpaint, you are a heartless women with obviously no experience of dementia in your family.

SillyNanny321 Sat 03-Aug-19 11:10:00

Day will come soon when we will be living with a limit on how long we live as in Logans Run.

BeagleMum Sat 03-Aug-19 11:25:03

My Dad has frontal lobe dementia and is in care which is fully funded by the NHS/Council. The main difference was that I had to get him sectioned as he was refusing help and was a danger to himself and others . I then had to ask for S113 continuing funding as they did not mention it during the review until I did (up to then they were talking about self funding even though THEY KNEW he was entitled to funding hoping that I had done zero research). It depends on the level of need then it tips from social need to medical need so make sure that you regularly ask for reassessment as Dementia only ever deteriorates - and be prepared for a fight. The Alzheimer’s Society have a great guide on what you need to do to back up your case- don’t just accept what the social workers say, from experience it seems they want to keep costs down by getting as many people to pay as possible - and if you do win make sure it is backdated and refunded.