Gransnet forums

Health

Dementia

(44 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?

annsixty Sun 04-Aug-19 19:26:04

I have said before but it is worth saying again a partner,wife/husband does not have to leave the home, but may well be left with not enough money to live thete.
However if they sell the house, not easy, half of the money raised must then to go to pay for the fees.
This may not leave the remain ing partner enough to buy anything else, it certainly wouldn't in my area.

lincolnimp Sun 04-Aug-19 15:57:54

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

Sorry, this is not so. Yes, Dementia is a terminal illness but is not funded.
My DF was 'fortunate' in that he was admitted to a specialist ward after my mother had struggled alone to care for him at home. He was wonderfully cared for there and many staff attended his funeral.
My DM could not take advantage of this care, as the ward was closed shortly after my DF died. We had to pay for her to be cared for in a care home. Fortunately it was a good one, as the three of us children paid through the nose to ensure that she had good care. Even though she had other medical conditions, which needed constant medication---which she was unable to control herself, she did not qualify for any medical care at all
Dementia is the cruelest of illnesses, but is just sidelined

starbird Sun 04-Aug-19 01:00:01

My understanding is that they cannot take your home all the time your partner lives there.

When it’s empty that’s different, and if the shortfall in the cost of the home could be covered by the rent, I think the potential heirs should be allowed to let it out, rather than having to sell it, and that the rent should be tax free.

blubber Sat 03-Aug-19 22:50:33

There is a 25% reduction in council tax. Charges are not waived altogether and carers allowance is not paid if one has a state pension. If the carer does not have state pension and carers allowance is paid the amount is taken off any pension received by the cared for.

Jennyluck Sat 03-Aug-19 21:15:00

Dementia is an utter curse. To find out your husband/wife has it , is devastating, to live with it is nightmare . As usual it’s the people in the middle who suffer, not the people who have been poorly paid and rented their homes or the wealthy, who can afford care. It’s the ones who took a chance and bought their own homes.
You shouldn’t have this extra worry about loosing your home, when your coping with dementia. It’s just cruel.

Granless Sat 03-Aug-19 20:43:58

....... because it would cost the NHS far too much. I do agree though that it should be funded if only partially.

Grannyjay Sat 03-Aug-19 19:33:19

My father became unwell with cancer and I became aware that things were not quite right with my mother. She became forgetful and denied doctors had been to see dad when they had. The doctor prescribed medication to delay the memory loss. My dad died and mum was living alone. She coped with support from me but it was difficult due to siblings not accepting her illness. Eventually SS got involved and the first thing they asked was does she own her house and then they seemed willing to help. She had carers help as she was diabetic but oh what a fight it became. She ended up being sectioned with brother trying to kidnap her out of the hospital. They were so concerned they had to do a DOLS (deprivation of liberty) when her sectioning date was up. After a year of sectioning she was placed in one of the best council run homes according to SS. I visited twice a week and one day she complained her feet hurt. I removed her footwear to find her toenails had curled and grown inside her feet. The staff are not allowed to touch her feet apparently and as they wasn’t bathing her (she would refuse everything as she was ill)they didn’t know. There was a very high turnover of staff who couldn’t speak English well so communication was hard. She was sectioned again twice with violent tendencies. She was under nhs care rather than social care therefore did not pay but in the eight years she was in a home the care was sadly lacking care. it was absolute hell watching my mum not have care from properly trained staff to deal with dementia. My mum needed prompting to have a bath or was her hair but the would just say do you want a bath? NO she would say and they would walk away. She wore hearing aids and the batteries died but they didn’t know. The slippers we bought were on another patient and she was wearing a size 5 and she wears a three normally. I could go on and on but I can’t. If I get this disease I am hoping I am able to have the mind to take some pills and a bottle of gin than endure the care in our so called care homes.

dinks13 Sat 03-Aug-19 18:35:53

What a totally heartless person you are carolpaint. Disgusting
.

Lindak Sat 03-Aug-19 17:23:55

cruel condition my father inlaw has it when he got it first the family didn't realise,I worked as a nurse in care of the elderly and realised he had dementia until recently none of the family would talk about it his wife wont accept help

Seiko70 Sat 03-Aug-19 15:46:45

When the money goes down to a certain level they will step in. My Mother had Dementia ,
So much for “from the cradle to the grave” when the NHS was formed in 1948

Harris27 Sat 03-Aug-19 14:10:26

I lost my mam to this in March and what a release for her. From the lovely vibrant woman to a shell of herself it's not nice at all. People who haven't experienced it should go and spend a day in their lives. Awful. We have no money left but are just so grateful for her care after ten years of it. But it should be funded I dint care what anyone says. It's an illness a terrible terrible illness.

TrendyNannie6 Sat 03-Aug-19 13:47:13

Sadly my father died of Alzheimer’s having multiple mini strokes seizures weekly , Alzheimer’s is horrendous disease he had to sell his house n paying several thousands a month for years. It was indeed an horrendous time for him and us who looked after him for several years until we couldn’t do it anymore, I didn’t claim carers allowance for looking after him as I did it out of love. Who cares if you are getting irritated carolpaint totally agree with Annaram1 v heartless

okimherenow Sat 03-Aug-19 13:23:34

IT is funding and the political decision not to fund.
Also research into all kinds of dementia is from charities not govt... Another political decision.

Somewhere there is a white paper on funding social care but lost in the govt system....

Interesting Brexit can readily produce £billions but not funding for dementia ...

Ahhh well... One day sanity will return.

MargaretinNorthant Sat 03-Aug-19 12:59:09

I nursed my late husband through Lewy Body Dementia. The last three years of his life were awful. He had hallucinations, gradually lost the ability to feed himself, became incontinent, and lost all sense of time. It was dreadful seeing a very intelligent man reduced to just a shell. The last seven months he was in a “care” home for which we paid £1000 a week. There he was left soaking wet, dragging himself along the floor while they stepped over him, and was twice assaulted by one of the careers. We took her to court as she was seen to hit him but it was one persons word against another, so case dismissed. I have felt guilty ever since for letting him go in there, but I was 75 and exhausted with the broken nights and constant watching him. We had no help at home at all. I can smile now at some of the things he said and did, like taking the legs off the fully laden table, and the colony of bats that lived in the bathroom and assumed a praying position when you went in, we had the Mafia living with us for three years, but it was hard at the time. He died seven months after going into care. I don’t know how they can class this as not a medical condition

Patticake123 Sat 03-Aug-19 12:58:13

Border girl has it in one Money is the reason. Or more precisely, lack of .

allule Sat 03-Aug-19 12:15:53

We bought our house when we maarried, paid for it for 25 years with tax relief, and have lived free for another 30 years. It owes us nothing! If we had not been lucky enough to buy, we would have been paying rent for 55 years and have nothing to show for it.
Our family insist that any savings we have and the value of our house is ours to use to make our old age as comfortable as possible, not to hoard to hand on.

Ideally, provision should be made entirely on need, whatever the cause, with the risk shared,but we cannot expect today's younger generation to cover the entire cost.

RobertReny Sat 03-Aug-19 12:07:06

The 59-year-old woman Debbie Moehnke who is suffering from early-onset dementia was admitted to Oregon Health & Science University (OHSU) in Portland for urgent cardiac care, where she needed heart bypass surgery, during her recovery she developed an infection that required powerful intravenous antibiotics. For that reason, she had to spend a month in the hospital, which made her medical expenses rise to nearly $454,000 for the treatment that saved her life and the insurer paid only $227,959.19

www.myhealthyclick.com/surprise-medical-bills-washougal-woman-owed-227000-heres-how-it-got-erased/

annsixty Sat 03-Aug-19 11:44:59

Two different SW told me categorically that the wholo of my H's private pension as well as his state pension would be taken for his care.
This would have left me with not even enough monthly income to pay council tax and energy bills apart from any others.
When I said this, both of them said, that is the way it works.
I rang AGE UK at their HQ and got a very nice man who told me they could only take half of my H's private pension, and sent me the relevant fact sheets.
Armed with these
I contacted the Finance Dept of my local council and they agreed.
I waz then asked for £100 a week top up fees by the home.
I refused to pay thix as I had been told was my right and SS paid this.
You really have to know what is your right.
I ended up paying just short of £2000 every four weeks.
If it was me now that I am on my own I do know that I would be paying the full amount until my money runs out.
That seems fair as I am not supporting anyone.

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.

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.

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.

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!

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

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.

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.