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The Politics of Dementia Care

Discussion in 'Dementia-related news and campaigns' started by Tender Face, Jan 3, 2007.

  1. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    In response to posts on other threads, notably most recently 'Avoiding Nursing Home Fees' my interest in the policies and political stance on 'dementia care' has been heightened .....

    I sense 'injustice' on many levels ... but don't know enough to help lobby against it ......

    I have read individual accounts and feel horrified...... I see concerns that go way beyond the financial ..... but a government will only see as 'fiscal'.... NICE being just one element of this......

    So, ask those members here who have the time to consider the 'political' element of dementia care to contribute here for a better understanding ..... and allow someone like me to better support campaigns for current and future care for sufferers and their carers....

    Previous posts and points gratefully received....

    Best wishes to all (from whatever political stance), Karen, x
     
  2. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    Dear Karen,
    I feel that the care of the elderly needs to be considered as a whole and there should be some kind of automatic assessment of people's needs as they get older. Perhaps all older people over the age of 75, or younger if they have a disability or serious medical condition, should be given a health check and the opportunity of an interview with a social worker if they wish. Relatives and friends could then raise any concerns about memory loss and strange behaviour in an informal way. If necessary, there could be a small charge for the assessment of an occupational therapist, which would be worthwhile if it allowed people to try out the best gadgets to suit their disabilities.
    The Government should encourage the provision of suitably adapted sheltered accommodation for the disabled, elderly and also vulnerable adults. Independence could then safely be ecouraged. I was horrified when I discovered that my mother had allowed a man into her house, with her next door neighbour's dry cleaning! Someone in the early stages of dementia may be unaware of potential dangers.
    There is a major house building programme in the overcrowded South East and yet many are living in houses which are too big and expensive for them to maintain. Rented accommodation would allow the elderly to downsize if they wished, rather than move into a Care Home. Sheltered housing is very thin on the ground and does not seem to be available for owner occupiers. It would be cheaper than residential care and offer an alternative for some.
    Once the Higher Rate of Attendance Allowance has been obtained, the system works well and the money is paid directly into the bank account each month. The Registered Care Contribution is complicated and awkward for the Nursing Home to obtain for the patients and much form filling is required, often to different Primary Care Trusts. Why not just pay it directly to the patients through their bank accounts and save all the wasteful paperwork? Now my Mum's is sorted out, we don't have to worry, but at one time they owed her nearly £1500.
    We've managed to let Mum's house out through an agent and she is getting an income from it, but the formalities are time consuming and quite complicated. It would be very useful if there was an information service about financial matters, as we felt we were venturing into unknown territory and I'm sure it would be quite easy to make disasterous mistakes.
    I think there should be a simplified tax and benefits system, so that everyone fills in one assessment form stating their income, social and medical needs and any credits can be paid back to the person directly. I wonder how many sick, elderly and vulnerable people miss out on money they are entitled to because they or their relatives fill in forms incorrectly or not at all. Only a minority of carers of dementia sufferers probably have access to a computer and TP.
    There seem to be many different organisations and charities helping with various diseases and illnesses, but no central co-ordinating body to see that everyone is pulling in the same direction. Care of the elderly should be part of an overall strategy which fits in with health care as a whole. It seems as if "sticking plasters" are being used to patch things up, when a lot more really needs to be done. Research needs to be done on a wide range of medical conditions as these may well be inter-related. We just don't know what the causes are of dementias and cancers, but there is a lot of work to be done finding out.
    Kayla
     
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Well, this might take my mind of my real problems...

    I take real issue with the taxation and pension credit system. Despite the fact that we are spending my mother's saving down at a rate of about £800 a month, she's still paying taxes on both her pensions and her savings (that aren't in ISA's). Furthermore, she's also paying council tax, even though she's getting nothing in terms of services (even the rubbish collection is privately contracted). As a home owner, with no mortgage, and a moderate private pension, she's not eligible for pension credit. If I purchased an annuity with some of her savings, and that money was paid direct to a nursing home, that money wouldn't be taxed, even if she out-lived the actuarial tables.

    Speaking of actuarial tables, since none of us have a crystal ball, I personally have a certain amount of concern that she will outlive her savings (sidebar: I once heard an ad for a financial services company that stated, and I do not lie, "we will ensure that you do not outlive your savings" which conjured up the some rather awful possibilities). I think there is a nursing home in her future, and honestly, to assuage my own guilt for not being there to take care of her, I would like to spend as much money as I can to ensure that she's well taken care of. Unfortunately, I have to consider the possibility that even at 89, she might live another 10 years. Something I do not want to do is get her settled somewhere, only to have to move her because the money's run out. A system that guaranteed that a person could stay in a specific home even when their money has run out would get my vote, perhaps with a pre-qualifying period. I understand, though, that that wouldn't be treating people equally. However, I'm more concerned about my mother than other people, to be brutally frank, and let's face it, there should be some benefits to having being fiscally responsible when you were younger.

    Oh yes, and just because you're self-funded shouldn't mean you're a non-person when it comes to social services - that really irritates me.

    I'm sure I'll think of some more.

    Jennifer
     
  4. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    It did seem strange to me that my mother's doctors signed repeat prescriptions for such a long time without a health check, and that a nurse gave her a flu jab without noticing she was dangerously thin.

    Would relatives and friends automatically be admitted to an interview without the patient's/client's consent? Like so many others, my mother did not want us involved until it was almost too late.

    I wanted my parents to move into sheltered accommodation near me years ago, but if they won't they won't.

    My mother in her last few months would have been delighted to let a man into the house if any happened to be available. I think she had enough female company. And any man could have got in by pretending to be a doctor/nurse/social worker/carer. It was just lucky that the men around at the time were harmless.

    At what stage can people be forced to leave their own homes? How do you encourage people to downsize before it's too late to move? (How do you persuade people to move to less crowded parts of the country, where they won't know anyone and might get lost, especially if they have had bad experiences of being treated as incomers or Down From Londons etc.?)

    I am sure that lots of sick, elderly and vulnerable people miss out on money they are entitled to, from filling in forms incorrectly or not at all, and especially dementia patients may claim to be able to do all sorts of things independently whereas relatives and carers would know how much help they really need. But again, at what stage would you say someone can't fill in her own forms.

    (All questions I will need to think about now for planning my own possible future, knowing there won't be any relatives close enough to care.)

    Lila
     
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    I knew I'd think of something. Direct Payments. Now this doesn't apply to us, but why on earth, if you're assessed as being eligible for these, can you not pay a relative to provide the care? If they're worried about abuse, then simply make sure that if it is a relative, they have the same contract requirements as non-relatives. Is there any other situation where you could not employ a relative in a business? I don't think so.

    Jennifer
     
  6. Whiskas

    Whiskas Registered User

    Oct 17, 2006
    158
    Corby
    #6 Whiskas, Jan 4, 2007
    Last edited: Jan 5, 2007
    As I understood it from a recent Skills for Carer's course run by my local AS branch, relatives can be employed in special circumstances and Dementia is classsed as special. Obviously the need for someone who is familiar to the person living with dementia has been taken into account, makes a change!

    Checked with local AS branch today and although it's possible it is quite difficult to prove the person living with dementia will not cope with anybody other than a family member. So sorry to raise false hopes will check my facts properly before I post next time!!

    cathy
     
  7. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Well 3 cheers for that anyway. However, I wonder where the line is. My mother is slightly demented (if you'll forgive the phrase) due to strokes. So one wonders if you have to have a certain level of dementia. Anyway, why not for all conditions - if you want to change something, you need as many people complaining as possible. If I had a physical disability, I would rather have a family member help me than an emplyed stranger.

    Jennifer
     
  8. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    I'm not sure that I necessarily would personally! It would depend on the nature of the help - if it involved bathing, toileting etc then I would prefer it to be done by a kind and competent professional. However, there should be the choice.
     
  9. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    I would not consider myself to be a particularly political individual, however, I used to believe (before mum developed AD), that the NHS was there for all, cradle to the grave…..how stupid was I.

    I wish that she, and my dad had lived the high life, not struggled to pay a mortgage to buy their own home, for it to be sold to pay for her Nursing Home fees.

    Cate
     
  10. daughter

    daughter Registered User

    Mar 16, 2005
    824
    #10 daughter, Jan 5, 2007
    Last edited: Jan 5, 2007
    Hi Karen,

    I love all of Kayla's points and wish this is how it could be but I cynically believe that it will not happen because there is too much emphasis on money in our society, (or rather too much saving/spending it in the wrong places!)
    My problem is that I don't really feel I know enough politically to even write properly on this thread! It's all so complex. The only way I can see it is at a personal level, in that I am either willing to allow my Mum and Dad's hard earned money help pay for Dad's care or I am unwilling to allow my Mum and Dad's hard earned money help pay for Dad's care.

    For me, those two conflicting stances change frquently, depending on many factors, my emotional state being the main one which leads to outrage, annoyance, disappoint or acceptance of the following;
    • Dad worked hard, saved by going without things, and paid into the system all his life, at a time when that generation were led to believe they would be cared for in their old age.
    • If Dad had a physical illness (or if he was younger, or had a drug problem) there would be no need for arguement/discussion over funding for his care.
    • Mum's current finanical burden and the interference by officials into every aspect of her and Dad's finances.
    • One of the most important things in Mum and Dad's lives was to leave something for their daughters to inherit.
    Then I counter these with:
    • Times have changed, it's no longer a welfare state.
    • There are many more people who are much worse off than my family.
    • I would not begrudge any amount of money to have my Dad well again.
    When I weigh it all up I do not think it is right that people with dementia should pay their nursing home fees but is that a purely subjective emotional greedy standpoint? I am just a daughter with a Dad with dementia - and Dad is just another number in this overcrowded country(/world) where (you're right, Cate) it is not cradle to grave any more. And even if I felt confident in my opinion on this matter, I wish I had the energy to stand and fight.

    Sorry if this is no help but at least someone might be able to use it to argue against and perhaps slap me round the face a bit for being so woolly and sitting on the fence! :eek:
     
  11. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    Once my mother had got used to the carers I stopped washing her and bedmaking, and that was a relief for my back and improved our relationship. I don't know how long we'd have been physically able to carry on without them.

    It would have been useful to have a clearer list to start with, of what the carers were supposed to do and not do. And it would have been useful if they'd actually turned up 3 times a day, and stayed for the amount of time arranged, it seems to be normal for them to fiddle their timesheets.

    I know that none of my relatives would do any of it for me anyway so I won't have that choice.

    Lila



     
  12. Whiskas

    Whiskas Registered User

    Oct 17, 2006
    158
    Corby
    Hi Jennifer
    Sorry to have raised false hopes, I have edited my post now and promise to double check things before I post next time! Apparantly you need to prove the person living with dementia could not cope with anyone but a family member looking after them .So if they go to a day centre or anything that involves other people then they would be classed as able to cope with an outside carer looking after them. At least I think I've got it right this time!!

    I do agree that it would be nice to have a choice and not have to fight for everything that would make life easier.

    Cathy
     
  13. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    There, and I thought perhaps logic, or consideration for the sufferer had triumphed over rules - no such luck!
     
  14. Whiskas

    Whiskas Registered User

    Oct 17, 2006
    158
    Corby
    One day it will or is that a flying pig I see before me!!
     
  15. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    the fact that younger people are not recognised to get this illness. Nothing is in place for them. Also they have to pay taxes etc and repairs to their houses. They don't get fuel help,grants etc and nursing homes will not take them due to being too young. They have the same costs as working families but have added expence for direct payment care we have an extra £32 a week to pay. The Invalidity benifit is even taxable so why get it? I am fed up with the constant financial checks. Are we not allowed to save or do repairs? I want to work what happens then do the services take my wage as well? As i am getting asked how much i have yet i only save the carers allowance.
    The whole system needs to be changed
     
  16. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    I think the whole system of continuing care after being in hospital is illogical and unfair. My father fortunately didn't have dementia at 84, but he was terminally ill with heart and kidney failure. He had been in hospital for nearly four weeks and they were going to send him home when his condition was stable, but he needed oxygen sometimes. The social worker said it would be fine for him to go home and my disabled, 75 year old mother could "easily " care for him. If the stairs were a problem, then his bed could be brought down into the through lounge and he could always use a commode! How Mum was supposed to carry it around with her arthritic hands wasn't revealed!
    We decided to let Dad go into respite care in a local Care Home for a week or two, to see how he got on. The home contacted the hospital and they told us that there was no way they could cope with him if was still needing to use oxygen. Apparently, an old lady was supposed to be able to manage, but a Care Home with plenty of trained staff couldn't or wouldn't be allowed to, because it wasn't a nursing home. There was no continuing care bed offered by the hospital.
    In the end Dad had a heart attack and died in a mixed ward, packed with 24 mainly elderly patients. Dad had already seen several other people die in the ward and the hospital closed three weeks afterwards, when the new one opened.
    There seems to be an impression that dementia patients are singled out for unfair treatment, but I really think that all elderly people get a raw deal and the problem is that anyone who is vulnerable through age, physical or mental disability will get pushed aside by the more active and vocal members of society. The last days of a person's life should be spent in dignified surroundings whatever their circumstances and it wasn't right that Dad had to witness the agony of a fellow patient with liver cancer. There was no Hospice Care provided for that poor man.
    In a civilized country, it should surely be possible to provide good quality care for those who need it, with any contributions towards that care based on a fair and logical system, based on a person's actual income. If they have valuable assets, these will be taxed any way when they are cashed in or a property is sold.
    It still makes me cross when I think of Dad in that horrible hospital ward and we could do nothing to get him out of there before he died. I wouldn't like anyone else to have to go through a similar experience.
    Kayla
     
  17. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    #17 Skye, Jan 5, 2007
    Last edited: Jan 6, 2007
    Hi Karen

    Haven't posted to your thread before, not from lack of interest, but because things are rather different here in Scotland, and I didn't want to create confusion.

    I'm really just beginning to get to grips with the system, John has been fairly stable for so long, until this year.

    Scotland has free personal care for over 65s, so I don't have to pay for Crossroads, and his day care is only £5 for lunch etc.

    BUT......the local authorities say they can't afford the free care, and are looking for ways round it. For example, some authorities have been charging for meal preparation. This has now been challenged in the courts, and they have been ordered to stop charging.......but not to refund money already paid!

    Some have been making people wait six months for the free care to come into effect for NH care. Not sure what the situation is here, but some people are thousands of pounds down.

    It's an extension of making people wait 6 months for attendance allowance. I can see the justification with lower level (just), provided it is backdated to the date of application, as it used to be.

    I can see no possible justification for making people wait to have the upgrade. John has been on the lower level for 4 years, with a progressive illness......so how can they say his present deterioration may be temporary? I wish!!

    Sorry if this is irrelevant to you, but at least it gives you some ideas of what to look out for when free care travels south.

    Love, and carry on campaigning,
     
  18. shauny

    shauny Registered User

    Oct 27, 2005
    57
    north-east england
    a question of maths.

    Hi All, i see it as this sometimes. The national insurance scheme is basically like a pyramid fund except on a much greater level. The money im afraid is running out as the social makeup of the population changes. I come back to the point i always seem to make. Politicians promise the earth but cannot deliver it. Shauny.
     
  19. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Thanks everyone who has contributed to this thread this far .... I just hope I can do justice to collating support and ideas and issues if just at my own local level ...... or that someone else reading or needing this thread can use the points raised ...

    A favourite doctrine: "The thing to remember about equality is that some are more equal than others" ..... and I think that's what has really 'got my gripe' (from a purely personal level I admit just comparing my dad being terminally ill some years ago to my mum now being diagnosed with dementia and the differences in the care we can expect)

    Hazel, please - the idea of this thread was not for people to feel they come to it with any political knowldege - I have none - except my local MP's adresss ;)

    And Skye, comparisons from 'other countries' are HUGELY important ... I have been fascinated at how 'Care Packages' and funding work etc etc work (or don't) in other parts of the world ... the fact it can be so different in Manchester than a few miles away in say Preston floors me...... sharing the 'good, bad, or doesn't even happen' makes for ideas ...... thank you.

    Shauny, I absolutely agree with you - it IS about maths ......and the maths of 'Middle Age' ......... worrying about how one might pay for your parent(s) care, if needed, supporting your children through higher level education, looking forward to watching them get into debt with student loans and before they've paid those off see them being urged to make pension provision ???? But if you can't support them (financially) because you're already working to cover you own tax and NI contributions and the deficit in your own pension fund ... through no fault of your own ...... or not working (as in 'not going out to work') because you have caring responsibilities .....

    So, as Chancellor of the Exchequer for my own little family ... where would I put any (personally earned) money available to me? Provision for my mum's potential future care needs or my son's future education ........? What funding would I expect to come from central or local government for either or both? ....

    I feel I am in a 'generation' that seems to be trying to 'fund' those I have been sandwiched between ......??? On a subjective level, I don't think there's any doubt where a Chancellor would devote any money available ......

    Just thoughts, Love, Karen, x
     
  20. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    I think I disagree with Shauny about the maths of social care being like a pyramid. Many people live independently to the end or do not even reach pension age. Just because someone is in a Care or Nursing Home, it does not mean that they are not contributing anything to the economy. My Mum's house has needed thousands of pounds of electrical and gas central heating work, which has created work for local businesses and VAT has been paid on the materials and labour. She is self-funding, so her money from pensions and allowances is paying fees at her NH which employs dozens of people. Mum is also still paying income tax on her pensions, income from her house letting and savings.
    Until a few years ago, Mum was helping at a mother and toddler group at our Church and she used to look after my children for me until I got home from work. My son is now a research scientist at a drug company and my daughter teaches science and they are paying taxes. Education isn't rationed according to how many children are in a family and prisoners don't have to pay to pay for their cells. Why should old people who have contributed so much in the past be made to feel unimportant?
    Yes, maybe people should contribute to their Care fees according to their income on a sliding scale like their income tax payments, but no-one should be forced to sell their home. My Mum's house is providing her with extra income. If she ran out of money and we had to sell it, her savings would dwindle very quickly and I would hate to have to move her now to a cheaper place, like some people have to do. Also, is it really fair that my Mum has more choice because she has savings than someone who, for whatever reason has not been able to save?
    I am also concerned about people who don't have family to look after them in old age or who have relations who are incompetant or negligent. What happens if money is mismanaged and an elderly person can't pay their fees any more or cope with looking after themselves at home? A civilized society should be looking after its sick, elderly, disabled and vulnerable members.
    Kayla
     

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