Dementia is a terminal illness isn't it?

Discussion in 'I care for a person with dementia' started by katie1, Mar 3, 2015.

  1. katie1

    katie1 Registered User

    Aug 5, 2014
    Kendal Cumbria
    Is there some kind of research or quote I could use as "evidence" to support our fight (not that it should be a fight after all it is a right.....but it feels like a fight) for NHS continuing Healthcare Funded place in a care home for my Dad, that states that Dementia is terminal?
    Dad has Vascular Dementia although one doctor recently said it is some kind of Cerebral type now, he recently had a bad turn and collapsed and is presently in hospital and unlikely to ever go back home. He has deteriorated a lot and needs a high level of care and supervision. He is not in the best place. His needs are not being met. He is even being supervised by a security guard because of cut backs and short staff on the ward! we want him out of there asap and want to get on with all the appropriate assessments so need to get together "evidence" (obviously we have some already) But a quote or something showing that Vascular Dementia is accepted as being terminal would help us such a lot......anyone point me in the right direction?
  2. Not so Rosy

    Not so Rosy Registered User

    Nov 30, 2013
    End of first paragraph. Dementia was the cause of death on my Mums Death Certificate. HTH.
  3. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    North East England
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    All the experts in the field agree it is and everyone wants it defined as such, however, if that happened the healthcare entitlement would have to follow and that would cost the government/NHS/taxpayer a fortune so it isn't in their best interest to see this happen.
    Alzheimer's may appear on a death certificate but is it ever given as the sole cause of death? Until it is then the government can maintain you may die with it but not from it so they're not obliged to do anything so the burden falls to the patient to pay and the family/friends to care.
    I spent a long time reading up on this (although I'm not necessarily the most computer literate) and I couldn't find a categorical definition of it, opinions it is from experts yes and statements that it is from the AZ society and other such professional bodies but if they go all head in the sand and won't accept this as proof what can you do?
    Good luck in your fight katie1 either you'll hit the brick wall of financial interest or you'll rewrite the rules for us all.
  5. Katrine

    Katrine Registered User

    Jan 20, 2011
    #5 Katrine, Mar 3, 2015
    Last edited: Mar 3, 2015
    I know this doesn't really address your question, but when I followed the posted link and read it, it struck me that the fact sheet offers an odd statistic. Delaying the onset of dementia by 5 years would halve the number of annual deaths from the condition. This seems like an accounting 'fact' not a medical one. It must mean either:

    a) death from dementia could be postponed by prolonging the life of the individual
    b) some people with dementia would die from a different primary cause before the condition had progressed to end stage
    c) eventually some people will benefit when the disease can be slowed down or stopped in its tracks.

    While it is a fact that life itself is a terminal condition in that it must end, dementia is undoubtedly what is known as 'life limiting'. That means it shortens what would otherwise have been a longer lifespan. I think the difficulty in having dementia defined as a 'terminal illness' is that people can live for many, many years with the condition. At what point is the person to be seen as 'terminally ill'? There are other medical conditions that have a pattern of long-term and progressive disability and eventual death. Do people suffering from these conditions get treated as 'terminally ill' while they are still at an early stage?

    The issue of needing funding for medical treatment and care should not, IMO, be a matter of proving that any medical condition is terminal. It should be a matter of what that person needs now, and in the foreseeable future. Whether or not they are likely to die in the next few months, or in 10 years time, they are unlikely to get better. It is the inevitability of progressive and increasing disability that is the key issue. However, I'm not in charge of funding policy and no doubt the criteria they use have to take into account how long individuals will need to have their care paid for. :(
  6. nitram

    nitram Registered User

    Apr 6, 2011
    North Manchester
    "Alzheimer's may appear on a death certificate but is it ever given as the sole cause of death?"

    I can state with certainty that Lewy Body Dementia has been recorded as the sole cause on at least one occasion.
  7. Jessbow

    Jessbow Registered User

    Is dementia a cause of death, or something you die with?

    People have diabetes ( and such like) for sometimes many years, they die with it, not so often 'of' it. (Diabetes rarely sees you off. more often complications of it)

    Given the same thought pattern, should anyone with diabetes ( which is definitely a medical issue) be entitled to CHC funding unquestioned?

    I secured CHC funding for my mother. No because she had dementia, not because she was diabetic, nor because she was partially sighted, but because she had an inoperable heart condition which meant she couldn't be left at home alone.
  8. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    My Husband's death certificate read;
    1(A) Aspiration pneumonia
    1(B) Alzheimers disease
    2 Hypertension COPD

    So AD had almost equal billing with Asp pneumonia.However, it was the AD that caused the problems with Aspiration pneumonia.
  9. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    Mil death certificate put dementia as cause of death. Strange that as the hospital and .dr had said she didn't have it only a month before her death,
  10. nitram

    nitram Registered User

    Apr 6, 2011
    North Manchester
  11. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    Personally, I don't think that classifying dementia as a terminal illness is going to influence the allocation of CHC funding. It is supposed to be based on need at the time.
    Many people with dementia can live for many years without having other health needs so would not warrant the funding.
    My husband's death certificate had Vascular Dementia on it but it also had Aspiration Pneumonia, which was of course caused by the dementia.
  12. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    Dementia doesn't appear to have limited my mother's life. She has had Alzh. For at least 12 years and is now 96. It is true that many of her family have been long lived, but even so the most any of them made was 89.

    If anything I would think the fact that she has been in a care home for over 7 years has probably contributed to her longevity. She is almost certainly better looked after and better fed than she would have been if she had stayed at home - as I know she would have wanted to - with all her marbles intact.
  13. marts1711

    marts1711 Registered User

    Oct 25, 2014
    Hi Jessbow
    I have just found this post. Could you expand on this for me. My dad has recently been turned down for CHC. He has vascular dementia, diabetes, chronic kidney disease, enlarged prostate that is inoperable due to an also inoperable chronic heart condition.indwelling catheter and also an inoperable heart condition .
    Seems to me he should get it.
    How did you get it for your mum??

    Marts x
  14. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    #14 Rageddy Anne, Apr 7, 2015
    Last edited: Apr 7, 2015
  15. lexy

    lexy Registered User

    Nov 24, 2013
    #15 lexy, Apr 7, 2015
    Last edited: Apr 11, 2015
  16. jasmineflower

    jasmineflower Registered User

    Aug 27, 2012
    Hi Katie1
    If you are preparing your CHC case I would try not to get too focused on the AD aspect.

    Concentrate on your father's needs as they are: do you have evidence of bed sores? Is special nursing care taking place to prevent them? (Check his notes and ask the nurses/HCA's for information).

    Can your dad communicate his needs? The assessor for my MIL tried to make out that because she could swear loudly she could "communicate"!! We vehemently argued that all her needs had to be guessed. The staff nurse supported us.

    Is your father immobile? How is he handled? Does he need trained staff?

    You say he has a security guard watching him. Why is this necessary? Is it because he is violent or is a high risk of falling? Can you find any evidence in his notes or medical history? Does your father have any pre-existing conditions that make him harder to look after than other people.

    These are the things that they score your father on so you should be prepared to argue your points and have evidence to back them up.

    My MIL's assessment turned into a heated discussion but they eventually conceded and she was granted CHC

    Hope this might help a bit
    J x
  17. thats life

    thats life Registered User

    Jan 2, 2013
    The sole reason on my mother's death certificate is Alzheimer's disease, the doctor was going to put, frailty in old age and Alzheimer's, I disagreed with as she was only 78 and only frail because she had Alzheimer's, she had no other health issues, the doctor agreed with me.

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