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Mom diagnosed with dementia prescribed aricept

Discussion in 'I care for a person with dementia' started by mistrymachine, Feb 18, 2017.

  1. mistrymachine

    mistrymachine Registered User

    Feb 18, 2017
    Hello everybody,

    So today was the day when one of my worst fears came true:(

    My mom (age 51) was diagnosed with dementia. She has very bad short term memory to a point that she cannot do a lot of things on her own without instructions and supervision. She also has anxiety and withdrawal symptoms. Although, in terms of bathing, walking, eating and following small conversation she is doing just fine. It mostly started after her menopause which was a pretty difficult period for her.

    Today she has been prescribed Aricept/Donepezil (5mg) for 3 month by neurologist. I am a bit hesitant to let her start with this drug.

    The reason is that we also had her blood test done about 3 months back and it showed that her vitamin b12 was on the "normal" lower end (250). This kind of went unnoticed at that time. In addition she had very low vitamin D for which she had injections and is taking supplement. Our GP only started with vitamin b12 injection this week plus folic acid supplements. She has to take injection for the next 5 weeks.

    May be its just me not wanting to accept the situation but I don't wont her to deteriorate further and quickly. I feel that there is some chance of recovery with vitamin b12 injections (trying to do some research on this) and that aricept/denopezil may deteriorate her condition in long run, and until her vitamin levels are normalized we shouldn't rush to another drug.

    We are going to have a second opinion from another GP but I was wondering if anyone here has some experience with aricept/donepezil and B12 deficiency as well?

    Any help in this regard is appreciated. Thank you very much.
  2. Beate

    Beate Registered User

    May 21, 2014
    Donepezil is the standard drug for people with Alzheimer's. Like any drug it might have side effects, but it's designed to stabilise or slow down your mother's condition. It will not improve it, but it's all there is out there at the moment. 5mg is the low dose to start with, so please don't deny your mother this drug. Give it to her and see how she gets on. It's good she is getting B12 injections, but they alone won't help the dementia.
  3. Lawson58

    Lawson58 Registered User

    Hi there and welcome to Talking Point.

    Your mum is very young to have been diagnosed with this disease and my heart goes out to you.

    My husband was diagnosed with Alzheimer's almost three years ago but he will have further testing later in the year because his geriatrician has some reservations about this at the moment.

    He was prescribed donepezil and was put on to a high dosage of vitamin B12 as well so your mum's treatment doesn't sound at all unusual to me. It is well understood that lack of vitamin B can cause memory problems so it sounds as if everything is being done to help your mum.

    OH responded well to the medication for some months but was eventually changed over to rivastigmine which suited him better. None of these drugs will ever cure this disease but if it helps your mum for a while then it is worth a try. They also can take a while to kick in so my guess is that the injections may have an effect long before the donepezil.

    Others will be along later who will also be able to offer advice but in my opinion you need to do anything and everything you can before your mum deteriorates further.

    I wish you strength for the road ahead.
  4. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    south-east London
    #4 LynneMcV, Feb 18, 2017
    Last edited: Feb 18, 2017
    Hi there - sorry to hear of your mother's diagnosis at such a young age.

    I am not an expert on dementia but I can tell you that the process leading to diagnosis is quite an intricate and lengthy one and does not rely just on blood tests.

    I suspect that somewhere along the line your mum would have had a MRI as well as undertaking mini tests which are not just about memory recall but also testing how the brain processes, co-ordinates and interprets information.

    All the tests your mum has taken at this point will have helped form the basis of the diagnosis of dementia which has now been given.

    My husband was diagnosed in his 50s and I too was hopeful that blood tests would show up various deficiencies which, when addressed, would remedy the situation.

    However, the fact was that a mild atrophy (shrinkage) of the brain was picked up in the MRI. This on its own was not absolute proof, but when looked at together with the results of mini assessment tests he had taken over several months, it was quite evident that we were at the start of our battle.

    The consultant showed me my husband's test papers. The thing that shocked me most was when I saw how he had drawn a clock face which was meant to show a particular time. There was an attempt at a circle on one side of the page and a jumble of numbers somewhere else on the other side of the page. Until that point I'd had absolutely no idea that his brain could not interpret things in the same way.

    Here was my husband, who could do literally everything for himself, debate current news, play competitive bowls, socialise, travel independently and deal with financial transactions as a volunteer in a charity shop - and yet his brain was clearly starting to fail, not just through memory issues but by the fact that it would not allow him to draw a circle, enter numbers in the correct order within that circle to illustrate a simple clock face - let alone add a long hand and short hand to indicate the chosen time.

    He was put on aricept (donepezil) immediately. We are almost five years on from that horrible day now and the diagnosis of dementia was clearly correct.

    I am thankful it was picked up very early and that he was able to benefit from medication aimed at slowing things down.

    If mom has been given a diagnosis of dementia I would let her have the aricept - it is the only medication available, and while not a cure, it will help slow the process. This provides precious time for both the person with dementia and their loved ones
  5. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hi mistrymachine
    a warm welcome to TP
    from the responses so far, you'll see that there are plenty of folk here who recognise and sympathise with your situation
    your mum sounds similar to my dad several years ago; especially the anxiety, yet being able to still do most daily tasks
    he started with donepezil and after a short time, I could see a difference - he wasn't 'better' as such (there's no cure, sadly) but he was more settled, the anxiety was much lessened and I could tell that he felt better in himself
    the meds can help to slow the pace of the dementia, especially if taken from an early stage - Aricept may not agree with your mum (a few have negative reactions eg stomach problems), it will definitely not be the cause of further deterioration (as said, the drug is to delay that)
    I appreciate that knowing a parent is being prescribed the drug does bring us face to face with the reality of the diagnosis - that's no good reason to think of denying the meds - and actually the prescribing/taking them is between your mum, the consultant and her GP; even with POA you have no real right to stop the taking of prescribed meds, certainly not without a discussion with the medics
    what's important is that your mum is as free from anxiety and other symptoms as far and as long as is possible so you have time together to settle into new routines and to simply enjoy being together - make some memories for you to cherish
    and keep posting
    best wishes to you both
  6. PollyP.

    PollyP. Registered User

    Oct 8, 2009
    Herefordshire UK
    First I would like to say welcome to Talking Point, it will be of great help for you. Also I am so very sorry to hear that your Mum is suffering at such a young age.

    My Mum (now 100!) was diagnosed with Alzheimer's dementia in 2009 and was put on Aricept. Within one month of taking it she seemed so much better and was able to do her crosswords again and watch the Quiz shows (and get the answers mostly correct too!) She was absolutely fine on Aricept until quite recently, when the consultant stopped the tablets as he felt it was overstimulating her brain and she had difficulty in dealing with that.

    I must say that obviously not everyone tolerates Aricept but please give your mum a chance, if it doesn't help then you can ask for the medication to be stopped.

    I'm so glad that my Mum got the opportunity to have this medication for 6 years, it really helped in her case.

    I don't know anything about B12 but I used to give Mum a multi-vitamin everyday which contained Fish oil.

    (Hugs) to you and your Mum

  7. Zana

    Zana Registered User

    May 12, 2016
    While I was caring for my MIL who has alzhiemers her GP discovered that her b12 and D was very low. This because she had a bad diet and stayed in most of the time.
    Her main carer was my SIL who had health problems of her own and is not a kitchen princess!

    I changed MILs diet, basically to the same as ours and made sure she got out a bit even if it was just to sit in the garden for a while.

    After 6 weeks the change was very noticeable. She spoke more and seemed much brighter.

    Sadly things returned to normal after I left. But it just shows that vitamins can have a big influence.

    My daughter has a vit B12 problem and gets injections, her symproms included cluminess tiredness depression and memory loss,,,,
  8. doodle1

    doodle1 Registered User

    May 11, 2012
    I am so sorry to hear about your mum. Like others both my parents were put on Aricept and it slowed the deterioration down.PLEASE do not deny your mother the Aricept in the hope that this memory loss is just vitamin deficiency. I am in my fifties and I would beg my children to do all they could for me- vitamin B12 and Aricept are not mutually exclusive drugs.
    I would also add that memory loss is NOT reversible and I would want in your mums situation to be slowing any deterioration down as much as possible.
    It is a hard diagnosis to accept especially as your mum is so young- this forum is incredibly supportive and your mum might also benefit from chatting to others with dementia . Hope this helps a little
  9. mistrymachine

    mistrymachine Registered User

    Feb 18, 2017
    Thank you all for your comments and wishes.

    I am certainly not going to deny my mum anything that would improve her quality of life. May be its because of the fact that she is relatively young that I want to be extra cautious with the medication she gets.

    I am also staying abroad currently and this new development means that I need to make some major changes in my career to be with her.

    Perhaps it would also help if some of you could share your experiences on how rapidly did the disease progress for your loved ones especially if was an early onset?
  10. mistrymachine

    mistrymachine Registered User

    Feb 18, 2017
    Thank you LynneMcV for your reply. I hope your husband is doing fine.

    My mum had neuropsychological test as well including clock drawing, i already knew she would perform poorly based on the fact that she could not sometime tell what time it was. Her MRI showed mild prominence of sulcal spaces and cistern which apparently is normal for people around 50s but may occur in dementia as well.

    If I may ask, was your husband prescribed aricept for long term or did he start on a low dose for short term? Ans what sort of improvements did he feel after starting aricept?

  11. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I think that although there are lots of variation in the speed of progression I dont think it age makes much difference. The thing is, though, that many older people with dementia die of something like a stroke, heart attack, or pneumonia before they reach the final stages of dementia. If someone is young and physically strong though, slowing down the rate of progress will maximise the quality of life for as long as possible.

    Mum was in her 80s when we realised that she had Alzheimers, although she had probably had it for some time and had hidden it because she was at mid stage by then. I was seeing new symptoms and problems developing on an almost daily basis. Once she started taking aricept it did not improve anything (nothing can get back what has been lost), but she stabilised and the progression was very slow over the next 2 or 3 years. Inevitably she has declined, though, and is now getting physically frail, but I have had a good couple of years that I did not think that I would see.

    What exactly are you concerned about with regard to aricept?
  12. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    south-east London
    #12 LynneMcV, Feb 18, 2017
    Last edited: Feb 18, 2017
    Hi Mistry, my husband was started on 5mg of aricept initially for 3 months with a view to increasing it to 10mg long term. In his case he remained on 5mg as he had a naturally slow heartbeat and it was felt that an increased dose might slow down his heart rate too much and cause him to faint (this isn't a risk faced by someone with a normal heart rate).

    As to how much it helped, it is hard to say. I would need to know how he would have fared without it. I can say that for the first four years he was doing very well. We enjoyed quizzes, a couple of holidays abroad, he was able to travel around on the buses, make himself things to eat and drink, go to the shops, he became a community champion (reporting litter, dog fouling for the local authority), did voluntary work and remained very engaged with life, his family and surroundings. Where he had been experiencing complete blanks in his memory from the day before, he was able to remember things not just from the previous day but from several months before.

    About 18 months after starting on the aricept he was also given memantine (usually the NHS gives aricept for mild-moderate and then memantine for the later stages, not both together. In the U.S. it is standard to give both together. Our consultant felt that as hubby was young and not able to take the full dose of aricept he would get maximum benefit from the two together).

    Five years on my husband is still taking aricept and memantine together. He has declined this past year and needs help with just about everything but he is still very engaged with life, mobile and content (unless he is suffering a virus or infection at which point things go haywire).

    Not everyone can tolerate aricept or memantine. My husband could and with hindsight I can say I wouldn't do anything differently if we were starting out with the diagnosis again now :)

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