1. Laylabud

    Laylabud Registered User

    Sep 7, 2007
    111
    Kent
    My Mum had a CT scan done back on 17th may this year when the results came through (early part of June) it showed that her brain had shrunk and was diagnosed with AD. In early June one day she flipped, she became hateful and aggressive towards me and i got to the point that i could not cope anymore and she was admitted to a dementia assessment unit which she is still there.
    After 2 weeks of her going in she was put on Aricept as we were told she was at the mild to moderate stage of the illness.
    We have recently found out a week after the event that she is no longer on the aricept because her illness has now progressed to moderate to severe and they are now saying that she has Vascular dementia as well as AD.
    Aricept i have been told takes a minimum of 3 months to show any signs of improvement of which Mum was not given that 3 month stint.

    With the recent rapid decline the doctor will not carry out anymore test i.e another CT scan to confirm if she now has a mixed dementia, are we entitled to a 2nd opinion and if so how do we go about it?
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,578
    Kent
    Dear Laylabud,

    I`m sorry you are so worried but I am unable to answer your query.

    I can only suggest you phone the AS Helpline, 0845 300 0336. Mon-Fri. 8.30 a.m. -6.30 p.m.

    I hope you find the answer.

    Love xx
     
  3. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    Hi Ladybud

    I am so sorry to see your mum has declined since her admission.

    I am not 100% sure, but it may be the case of the doctors wanting to know the value of a second opinion, in other words, would they manage your mums symptoms differently by having further diagnosis. I would ask the question also, what would be the impact on your mum going through further tests, how would she handle this.

    Gosh I totally appreciate that you feel frustrated, and want answers, but sadly unless it reflects how mum is treated in the future it may not make much difference.

    I really feel for you.

    Love

    Cate
     
  4. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,518
    I think the problem here is that with mixed dementia, your mum's condition has progressed much more rapidly than expected. With Alzheimers the progression is usually relatively slow, and steady. With vascular, there are longer periods of stability with sudden declines. You mum may have both.

    This could mean that the vascular component has caused her to suddenly decline from the "mild/moderate" stage to the "severe" stage, at which point, Aricept is no longer appropriate with or without the "three month trial"

    One of the difficult things about the dementias, is that (as I understand things) there is no real definitive way of diagnosing them through physical tests - often as not, diagnosis has to be by the symptoms and the way they progress.

    Or of course, you mum may have developed vascular dementia as a new condition, between being diagnosed with Alzheimer's Disease and being prescribed Aricept.

    I should add that my dad is diagnosed with mixed dementia - although it is thought that the vascular component is due to a one-off mini-stroke follwing a major operation years ago rather than being ongoing - but has never had any scans or anything like that.
     
  5. Laylabud

    Laylabud Registered User

    Sep 7, 2007
    111
    Kent
    Thank you all so far for the help, i will have to consider my options over the weekend, as i have a meeting with SS and the doctor next week.
     
  6. Petrus

    Petrus Registered User

    Aug 7, 2007
    61
    Northumberland
    My Experience

    Laylabud,
    Having lived abroad most of my adult life, I did not know how the UK system worked.

    I went to the GP and said I wanted my wife J. to see a neurologist for a second opinion (she had earlier seen an old age psychiatrist). GP was concerned to clarify why I wanted a second opinion and when I said that I simply wanted to be sure that nothing had been missed since J's problem had come on so rapidly and at a young age, he asked me how I felt about the psychiatrist. I told him that I had every confidence in her - but I wanted a different speciality to check things out.

    The GP told me he thought my request both reasonable and sensible and said he would work with the psychiatrist to get the best possible neurologist to take a look. Within less than a month we were in the neurologist's (a leading expert in the UK - checked him out through Google) diagnostic clinic for 3 hours of consultation and testing.

    The diagnosis and likely prognosis was confirmed. I e-mailed the GP and consultants to tell them that I was content. The psychiatrist continues as J's consultant. She has told me that she thought I did exactly the right thing in exactly the right way saying that if ever she were in my situation she would do exactly the same herself.

    Hope you are successful. I found it deeply reassuring to know that I had done my very best at this critical point. It made it possible for me to accept the reality of the situation and of the most probable future.
     
  7. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    My mum went from being seemingly normal with a bit of forgetfulness, to middle stage AD in a matter of weeks (Our fault, we just missed all the signals). She was admitted to a Mental Health Unit at a local hospital, apparently a Flagship unit and I'd agree with that, and was put on Aricept. I was told by the psychiatrist that Aricept can take 6 months to a year to have an effect (and it only slows down the progression of the illness, doesn't reverse anything), but also that they can tell within a few weeks whether it is going to be useful or not. My mum was on it for about a month, and it had no effect, so she was taken off it. I was told they can tell within that time if it is going to be worthwhile in the longer term.

    Hope this helps.

    Margaret
     
  8. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    A further point, my mum does NOT have vascular dementia, but the decline was still very rapid. We are still reeling from the speed of it.

    Margaret
     
  9. Laylabud

    Laylabud Registered User

    Sep 7, 2007
    111
    Kent


    Thank you Petrus

    All i want for my Mum is the best, i feel i have let her down badly as i did not realise the extent of her illness, i just wished i made her go for a memory test sooner, she has always been stubborn and i guess that she knew she had a slight problem but did not want to admit it to herself or her family.
    I am still coming to terms with it all and see the mum i love, adore and respect slowing fading and this is very difficult to see everyday.

    Thank you all for your support and advice.
     
  10. Petrus

    Petrus Registered User

    Aug 7, 2007
    61
    Northumberland
    Couple of Thoughts

    One of the difficulties with AD is that the medics. are in the dark to a large extent. The acetyl-cholinesterase inhibitor medication (Aricept etc.) is one such area. The test data show that there are some people who experience a large benefit from the medication; sadly nobody knows why. This was a key question that NICE asked of the drug manufacturers. (Remove this small group from the research results and there is no significant difference between having the medication and not having it). This is the heart of the dispute between NICE and the manufacturers and we have been ill-served by the AS not acknowledging this and helping to get proper, science-based answers. The medics are divided: some (e.g. our Old Age Pyschiatrist Consultant) take the view, "If there are no intolerable side-effects, why not take the medication? there is nothing else we can do to try to help". Others (e.g. our Neurologist Consultant) take the view, "Once it is clear that there is no observable benefit why bother?"
    A second area is the whole question of speed of development of the disease. For some sufferers it can all happen very quickly. J. was doing bereavement counselling in a joint venture between the Churches and GP practice in our rural valley. This involved monthly meetings with one of the GPs and psychologists and other visiting professionals. In these the counsellors had to make reports, do role-plays, etc. etc. That GP agrees with me that there is no way they could have missed J. having a problem. We went on a 1 month vacation to celebrate my 60th; during that I first noticed things. On talking with the family, they told me they had noticed things around the same time. Four months after the start of that vacation J. had her complete diagnosis of moderate dementia plus clear atrophy of significant parts of the brain. In that period she lost her professional skills of writing (and reading), painting and embroidery. 1 year late she is severely demented, requires support 24/7 and likely will need to go into a home within the next few months. Only recently (last 5 years) has research started into the differences in speed of progression and whether or not that implies a different disease mechanism.

    Given the difficulties the medics have, we carers can be forgiven much. We are at the sharp end of this disease and the medics and social services people (or at least the majority) recognise that they struggle to be of real, practical help. (Lack of finance and quality staff in social services is another huge contributor to their sense of helplessness). This has been recognised in recent government reports (NICE on carers; National Audit Office on Dementia) as well as studies from charitable organisations. Recognising and accepting these facts helps me to cope with my feelings of guilt - I can only do my best and that best is limited because of the lack of knowledge of the professionals. (An analogy I find helpful - I cannot be held responsible and should not feel guilty for the fillings in my teeth because fluoride toothpaste was not available as I grew up; since I had access to such toothpaste, I have only had 1 or 2 new fillings - but lots of replacements!!) In his brilliant and practically helpful book "The Simplicity of Dementia", Huub Buijssen (a Dutch medic and carer) has his final chapter on dealing with guilt. He points out that most carers will feel guilt to some extent and writes about its value in keeping us going (the desire to do more to overcome it) - provided we keep in under control and in perspective.

    I hope this week goes well for you.
     
  11. Laylabud

    Laylabud Registered User

    Sep 7, 2007
    111
    Kent
    Thank you Petrus for going to so much trouble to find this helpful information, it does help.

    Laylabud
     
  12. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Laylabud, you have not let anyone down at all. I felt like that, too. I missed the warning signs, they came on so fast and without me noticing.

    Much love, let us know how you go on.

    Margaret
     
  13. Laylabud

    Laylabud Registered User

    Sep 7, 2007
    111
    Kent

    Thanks margaret will do
     
  14. Laylabud

    Laylabud Registered User

    Sep 7, 2007
    111
    Kent
    We had the meeting with SS this week and Mum will be going into an EMI nursing home once her case has been put forward to a panel of judges for approval. They are still insisting that she does not meet the continuing care criteria, this form was completed by the ward manager on 21.8.07, of which i think that mum has gone down hill since then.
    We had a letter yesterday from the assessment centre (she is still currently there) inviting mum to attend an out patients appointment for 22.10.07. I phoned them as it was clearly the left foot not knowing what the right foot was doing, only to be told after they phoned back once they had investigated that the appointment had been cancelled as they no longer needed to see her because she was no longer on the aricept. my worry now is that once she goes into a nursing home she will get forgotten about by the consultant.

    Until now because of any possible upset for mum i have held off going down the road of getting a 2nd opinion, but i only want what is best for her. Does anyone know anything about Ebxia which i understand can be given in moderate/severe stages of the illness.
     
  15. Petrus

    Petrus Registered User

    Aug 7, 2007
    61
    Northumberland
    Ebixa: Answer to Question Plus Perspective

    Laylabud,
    Your are right, Ebixa (pharmaceutical name: memantine) is designed for use among AD patients who are moderate to severe. It has been tested alone and in combination with Aricept (pharmaceutical name: donepezil). The drug works in a different way to Aricept, hence the interest in looking at the use of the two drugs together.

    Sadly, it is not clear that Ebixa alone or together with Aricept provides a medical benefit. NICE have taken the view that, for now, its use can only be supported for clinical trials - they consider that more testing work needs to be done.

    I know that NICE gets criticised in the UK, especially by the AS (unfairly in my view); if you wish, read what the Mayo Clinic in the US says about alzheimer's drugs - http://www.mayoclinic.com/health/alzheimers/AZ00015 .

    The following quote is about as clear as scientists (including medics) get:

    "Medication can improve the quality of life for people with Alzheimer's and their caregivers. It may even delay placement in a nursing home.

    Unfortunately, Alzheimer's medications don't work for everyone. Some of the most commonly used drugs work in less than half the people tested. For those who are helped, the drugs' effects often are modest and temporary. Scientists continue to search for more effective drugs that might someday prevent Alzheimer's."


    In plain English that means, "Something positive and pretty amazing just might be going on here with a few people. But don't kid yourself, for the majority the drugs just do not work".

    The Mayo Clinic is highly respected worldwide and is independent of government. Even though the US Federal Drug Agency has approved memantine for sale, the Mayo Clinic is sceptical of its effectiveness (indeed of the effectiveness of all AD drugs). However, since there is nothing else to be done (except for tender loving care) it is neither surprising nor unreasonable that many people want to give the drugs a try. In my view, that is OK if there are no side-effects. The most common, known problems with Ebixa are dizziness, hallucinations (and delusions), kidney and urinary tract problems. (In J's case I and the consultant have determined not to pursue the Ebixa possiblities because J. already has significant hallucination and delusional problems).

    Up to this point, the argumentation is purely medico-scientific: do the drugs work and is it worth taking the risk that there could be side-effects? If the answer is "Yes", then the next question is, "Is it worth paying for the drugs?" In the UK that question is answered by NICE for the NHS; in many other countries it is the health insurance bodies - for-profit companies or non-profit collectives - who make the decision; and many say, "No". (In fact many insurance bodies exclude Alzheimer's from their list of recognised conditions). At this point individuals have to decide if they wish to pay for the drugs themselves. Sorry, but I do not know how expensive Ebixa is; nor do I know what implications there are in the UK if a person chooses to start paying for things privately alongside the NHS.
     
  16. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    Hi Laylabud,

    My Dad has been on Ebixa since January of this year. He was considered unsuitable for the Aricept type drugs as he has an irregular heart beat. The Ebixa was prescribed on the NHS, but how I don't know, in view of the NICE guidelines :confused: .

    He was considered mid stage as his MMSE score was 14 (and on Tuesday was down to 8 although this we believe is distorted by the type od dementia).

    He has not suffered any of the side effects outlined by Petrus, but of course everyone reacts differently to different drugs.

    Has it made a difference? Difficult to say... certainly it's not been a miracle cure. The Consultant we saw on Tuesday (different to the one who origianally presribed Ebixa) asked us if we thought it was having an effect. When we replied not really, he remarked that he was not surprised as he did not think it did anyone much good. However, as it is doing no harm he is happy for him to continue taking it.

    The only other thing I know about Ebixa is that it is secreted (is that the right term?) by the kidneys and if you have an impaired kidney function you may be unsuitable. My Dad's kidneys are not A1 but normal for a man of 82 so he is on a low dose which the GP does not want to increase to the 'regular' dose.

    As for cost if you buy Ebixa privately, have a look at this thread
    http://www.alzheimers.org.uk/TalkingPoint/discuss/showthread.php?t=6341

    Sue
     
  17. Laylabud

    Laylabud Registered User

    Sep 7, 2007
    111
    Kent
    Mum's hospital consultant will not prescribe any AD drugs, so how do i go down the route of trying to see if we can get Ebxia?
     

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