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Dementia - Health or social issue or both - Carers UK Forum

Dementia - Health or social issue or both

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My mother’s dementia is arbitrarily classed as a social, not medical, condition, so she gets little help with her care costs. This is unfair
see article in full here
http://www.theguardian.com/commentisfre ... ign=buffer
This may prove an unpopular reply, especially as I have never had a relative with dementia but I speak as I find.

The author of this piece talks about moral judgements and then proceeds to do exactly that herself with her examples of self inflicted illnesses-although not said, it's implied. That put my back up immediately. And no, it's not fair. But there are a whole lot of adults, many youngish who are in care homes- they are not allowed assets either. Many of them also have complex and mixed needs and all too many family members have also experienced the "care vs medical" tussle. It's not just dementia sufferers that have to face the indignity of trying to haggle for enough inco pads-they limit them for everyone, their is no "unlimited" amount. What angers me is when people speak of "free at point of entry" NHS then proceeds to make pointless comparisons. Where does the line get drawn? That somehow younger adults are somehow less worthy of medical entitlement because they haven't paid into the "system?"

We didn't choose for our carees to have the combined conditions that many of them have. We too face those who want their respective authorities, whether the NHS or Social Services, to be basically absolved of costs concerned. But the facts are that this battle has been going on, in one way or another, for years. Unless there is medical treatment (and how do we arrive at the definition of that?), then NHS will not pay. There is the issue of continuing healthcare funded by the NHS but that is a thorny one and not straightforward.

If one wants to argue the case for Health care, one has to come up with something better than incontinence pads. It's not enough, nor is the argument that it's unfair. It's proof that someone needs medical treatment primarily, not the care that a family member can (often has to) provide, such as keeping someone safe, coping with rages, wandering, distress..exhausting themselves in the process. Like so many who care.
The argument, plain and simple, are that these are not nursing needs.

I just want to be really clear that my beef is with the way the author presented her story and argument. NOT with dementia treatments or entitlements, from this forum I've seen what others go through. But don't forget the rest who also deal with this never ending battle over funds.
I agree. Dementia is caused by actual, physical changes within the brain that can be seen on a scan. It is a medical condition.

I read somewhere, someone saying that they thought dementia should be re-named "memory loss syndrome" as "dementia" gives the impression of a mental health condition. I think they could well be right.

Ladybird, I hear what you are saying and I agree that this was not a well written piece and everyone else is battling over funds, but is that a good argument to use either? There needs to be more funding in general for all conditions. I wonder what you consider to be nursing care? Dealing with all the things that you mention is not easy and in extreme cases are beyond relatives and it needs training to know how to deal with it. Do you consider washing, feeding, hoisting patients to be nursing? I would, but many people do this at home. Just because it can be done at home doesnt stop it being nursing care.

Im sorry, I did not mean this to be a rant and I did not mean to upset anyone.
My mum paid £1,000 per WEEK for her care - I had to sell her house to pay for care. Many years ago I regularly visited long stay geriatric hospitals. NHS Continuing Care was introduced so those people would receive better care at lower cost than occupying a hospital bed. Now, Continuing Care is almost impossible to get in my area. It is blatant age discrimination. My mum couldn't even roll over in bed by herself, couldn't pump up her own pillows, needed a catheter plus bladder washouts, was semi incontinent, couldn't even feed herself or reach for a cup for a drink. Less than two weeks before she died, the GP, who told me that mum would be unlikely to see Christmas (she lasted until 10th January), still refused to put in an application for Continuing Care, so that there was more money for other people. This is blatant age discrimination. The NHS Act makes it clear that when someone has a health problem care should be free at the point of delivery.
This is a cynical, but probably a possibly practical 'solution'.....

in the future, we all will have to make a living will/advance directive on the day we retire (ie, eligible for state pension), and if our living will/advance directive says 'DNR me - including no antibiotics or any life-preserving treatment - if I develop dementia over the age of 80', then up until the point we die (due to being DNR'd) we'll get completely free medical/nursing/social care, BUT, if we don't agree to that proviso, then we'll have to use our own money to pay for our care.....

And/or, maybe we just all start paying a dedicated 'dementia care' insurance policy that will pay for our care, if the time comes.
No ranting going on here as far as I can see Crocus, even if you did rant, this is the place to do it. :) I thought I would reply to both yours and BB's post, as best as I can anyway.

We are in agreement re general funding. I'm not in disagreement about funding for those with dementia either as I hoped I had made plain at the end of my post - I think my style of writing may well come across as abrupt, if so I apologise. What I was saying, or attempting to, is that it is the NHS's simplistic viewpoint that care is care, if nurses are not involved in hands on looking after a person then it is not a health issue. Or that is the way it appears to me, albeit as an outsider to dementia. But I do believe that there are many younger people in a similar position, with medical problems that have then led on to care issues and they seem to be ignored. I take the point about whether this is a good argument, frankly I don't know, I just felt it needed to be raised.

Regarding nursing care, good question. ive got experience of carrying out some of the things I've mentioned regarding care, ive also been on the other side of the coin. As for Continuing Care, I have personal experience of it too. It may have been brought in with good intention but I think it has been extremely difficult to get for a long time.

I can't see the NHS shifting their position on this somehow.
I think what is so deeply ironic is that the more expensive the nursing/care needs, the lower the quality of life for the patient/caree! ie, when elderly people need huge amounts of (very expensive!)nursing and care, it's because they are very, very, very poorly, and therefore, ironically, have the least QoL...

so society spends the most money to achieve the least QoL.....

I mean, imagine how lovely and luxurious life would be for a healthy person if they had a thousand pounds a week spent on them.........yet all it could do for BB's poor mother was eke out a miserable, painful last few weeks and months.....

Slightly less ironically (or at least, in a more serious way), in Cancerworld, there is a very clear, very dramatic 'cut-off' between being 'treatable' and 'untreatable' - at some stage of progression of cancer, anti-cancer therapy is cut off and drugs/radiation/surgery actively DENIED to patients because it is deemed too expensive to be worth it in terms of extra lifespan gained. This is spelt out brutally by NICE who simply won't fund the drugs and specialist radiation etc that can eke out life by months (sometimes a few years).

The patient crosses a VERY clear line from 'therapeutic' treatment to simply 'best supportive care', ie, palliative only....they are given drugs to ease their passing from life, and the cancer is allowed to 'take over'.

This simply doesn't seem to happen to dementia - which, as we know from the Alzheimer's Society - is under increasing demand to be recognised as a terminal illness, just as cancer is

So, in Cancerworld, the NHS readily 'condemns to premature death' those whose care is deemed too expensive, by withdrawing life-preserving treatment, yet the NHS doesn't seem to do this for dementia. Yet both are terminal illnesses.
Having studied the Continuing Care statistics for the last few years, it is a postcode lottery. In my area the numbers receiving it have dropped by 50% in the last three years. In other areas, the numbers have increased to 800% of the figure 3 years ago. That can't be right! Eligibility depends on whether or not you have a PRIMARY health need. If so, then the social care element is free. I think everyone should pay a reasonable amount towards their "hotel" costs to the NHS, either in a nursing home, or in hospital. I feel this would go a long way towards solving the cost of the NHS.
bowlingbun wrote: I think everyone should pay a reasonable amount towards their "hotel" costs to the NHS, either in a nursing home, or in hospital. I feel this would go a long way towards solving the cost of the NHS.
Its one of those things that sounds like a good idea, but consider.
Firstly, people who are in hospital (unless they own a house with no mortgage) will still be paying mortgage/rent on their own property - especially if they have family living at their home. Paying a "double" amount for accommodation will not be viewed kindly by the patient/patients family, and if they are on benefits could well cause financial hardship. You could say that they could be exempt, but this will have to be administered by someone (probably within the hospital) which will cost. This brings me onto the next point: someone (or probably, lots of someones - plus managers) will need to collect the data, check the financial status of the patient, bill the patients, collect the money (should they involve debt collectors if the money is not forth coming?) etc, etc and all of this will probably cost quite a lot of expenses.
There wont be as much money made as it first looks and TBH Im not sure it would be worth it
So does that mean that my husband and I should have been paid the wages of the nurses that were being saved because we had to stay in the hospital and share the 24/7 care between the two of us? Why should we have had to pay "hotel" costs on top of that. Plus remember they withdraw the pathetic carers allowance when a person is in hospital for a certain length of time even though we were there 24/7 hours a day between the two of us! Plus if Rob gets a trachy we are already having the arguments over whether its medical or social. Social work says its medical. Health says its social. God help us when he actually needs it done. His respiratory consultant has 3 people currently trapped in hospital because the SW depts say that looking after trachys is not their responsibility!