Ativan or Risperidone

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My 81 year old Mother has Dementia. She is becoming more and more negative, agitated and uncooperative. She won't change her clothes, refused to bath, has been found in the lady's room across the hall, in her bed, says people are trying to kill her and makes no sense most of the time when she talks. It has been suggested that she take Ativan or Risperidone. I have not heard great things about either. Has anyone had any experience with their parent taking either of these medications?

Thank you!

 

0 likes, 17 replies

17 Replies

  • Posted

    Hello Diane,

    Just to introduce myself - I coped with my mother's dementia for nine years until her death 12 years ago, then took on the care of a friend a few years later. Both were suffering from vascular dementia, though most dementias manifest in much the same way, whatever the cause. There is, however, a specialist dementia nurse who sometimes posts on these boards, and she says aggressive behaviour is more common in vascular dementia than Alzheimer's. I'm also a former neuro nurse, btw, but my only experience with senile dementias is via the situations described above.

    First of all, let me say you have all my sympathy. I know just what you and your mother are going through.

    My mother wasn't aggressive, only intensely anxious and obsessive. She'd suffered all her life from severe anxiety and what I suspect was undiagnosed OCD, so these conditions inevitably got worse. She wasn't put on any mood-altering medications.

    My poor friend, however, became extremely aggressive a couple of years into her dementia. She reluctantly accepted that she couldn't cope alone any more and moved into a very nice home. Unfortunately, a quite innocent event in the home triggered memories of appalling sexual abuse in childhood (which I'd been unaware of) and after that she became unmanageably aggressive. After she pushed the head nurse down the stairs (he wasn't hurt) she was started on risperidone (European brand name Risperdal).

    From my experience with my friend, I'd advise extreme caution with this drug, which is classed as an atypical antipsychotic. None of the drugs in this group are authorised for use in the elderly, but they are widely prescribed for controlling aggressive dementia patients. I'm not entirely unsympathetic towards this practice, knowing how difficult it is for care home staff to look after aggressive residents, and especially protecting other residents from them.

    However, if your mother is going to start on risperidone, you'll need to be extremely watchful as to the dose she's put on. Medications of this group are sometimes prescribed by GPs (PCPs in the US) attached to care homes, who have little knowledge of appropriate dosages.

    I wasn't even told that my friend had been put on this drug, even though I was her next of kin. I only found out when I went to pick her up one day to take her out to lunch (having seen her in her normal state only two days earlier) and found her completely rigid in her bed, in what appeared to be an advanced state of Parkinson's disease. I raised Cain in the home, demanding to know what she'd been given, and was finally told it was risperidone, 2mg twice daily.

    This is a massive starting dose for a 79-year-old with a BMI of under 20. It should have been no more than 0.5mg twice daily. The GP who'd prescribed the drug refused to see me, and it was another two or three weeks before the staff in the home started panicking over her condition. By this time, my friend who'd always been very vigorous and active (admittedly too much so in the previous few weeks) was reduced to a catatonic husk, covered in bedsores. The doctor then ordered them to stop the drug, tapering from 4mg to zero in only a week.

    As is the case for all atypical antipsychotics, sudden withdrawal can cause rebound psychosis, even in patients who weren't psychotic in the first place. This is what happened to my friend. She regained her physical vigour in only a couple of weeks, by which time she was totally out of control and in a state of full-blown psychosis. Shortly afterwards she stabbed a very frail resident with a fork, and ended up in a high-security psychogeriatric unit.

    Risperidone might well be useful for your mother, but the moral of this story is to make quite sure you're involved in the discussion about dosage before any half-competent doctor goes ahead. You can increase the dosage of antipsychotics if the starting dose isn't enough, but you're likely to run into major problems once you start reducing it. If any other drug is suggested, you need to google it to check whether it's an antipsychotic before starting, then insist on the lowest possible dose at the outset.

    Two other antipsychotics of this class which were subsequently prescribed for my friend were clozapine (multiple brand names for this one) and olanzapine (most commonly Zyprexa). Clozapine had appalling side-effects, producing violent chorea-like movements which made it impossible even to feed her. Olanzapine - which was also started at too high a dose - had fewer side-effects, but I believe it contributed to her hands becoming totally spastic and useless just a few months later. She died, aged 80, 18 months after she started on antipsychotic drugs. Although I could see that this was in many ways a blessing, I'm still convinced that the inept prescription of antipsychotic drugs hastened her end. It certainly made her final year a complete misery.

    She was also prescribed a benzodiazepine in very low doses - alprazolam (Xanax) in her case, but I believe most of the benzo group act in very much the same way.

    If I'd been consulted, I think I would have opted for her to be tried on a benzo first before hitting her with the chemical cosh of high-dose antipsychotics. However, if the patient is extremely agitated or aggressive, it might be necessary to move on to a very low dose of an antipsychotic.

    It sounds as if you're very hands-on in the care of your mother, and able to make your voice heard. Whatever is suggested, google it first and, above all, always make sure they start her on the lowest possible dose, then increase it if necessary.

    My very best wishes,

    Lily

    • Posted

      Lily

      All I can say is Wow. I'm so sorry that you have had to go through all of this. What a horrible disease. My Mom has never been actually diagnosed. We knew she had major memory issues and reading different sites, we believe she has Alzheimer's. My sister is her major care taker since she lives near her and I live quite far away in Chicago. She has been in the same Assisted Living for over 5 years and we do get a lot of info on the changes in her behavior. 

      We had recently asked for help with changing, washing and bathing my Mom. She had refused to do all 3 and we were trying to give my sister relief. I was visiting a few weeks ago and she tried to explain to me "what the girls did". We could see she was not happy with the way she was helped and forced to bath. A week after that she was bathed again and my sister went to visit. She was very angry and not happy at all. My sister decide that she would continue to try and bath my Mom. A few days later she was found sleeping in her friend's room across the hall. We think she feels safe there.

      We recently had her taken off Namenda and the Exelon patch. We did not think the medication was working to help with her Alzheimers. Do you think this could be contributing to her behavior? 

      When the two medications were mentioned to us,I got on line and read that Risperodone may increase the risk of dying in Dementia patients. Everything that I read seemed to be the same thing that you have told me. Is Atavan the same type of drug.

      Thanks so much for your help. My Mom has never taken a lot of medications. We feel that she would be very susceptible to any kid of drugs. I will google benzo and see if that would be better. I'm scared to death!

      Thank you for all of your invite!

      Diane

    • Posted

      So sorry to hear about all this Diane. Refusal to bathe is almost universal among dementia patients. Even my mother, who was relatively docile, was very reluctant to get wet. And in my friend's case it was the head nurse's insistence that she accept being showered one day when she'd been badly incontinent that triggered all the subsequent events.

      Sorry I was being a bit too technical. Both Ativan and Xanax are examples of the benzodiazepine family (benzos for short). Valium is another one. They're all used to treat anxiety. This can be helpful in reducing aggression in dementia sufferers, as it's often anxiety arising from their inability to understand what's going on that makes them lash out.

      Benzodiazepines like Ativan are an entirely different class of drug from antipsychotics, and have fewer side-effects. As already mentioned, if I'd been given the choice before my friend was put on risperidone, I'd definitely have opted for Ativan or another benzo.

      I had to google Namenda, as I'm not familiar with US drug brand names. I must admit I'm still not much wiser on discovering the generic name, but I suspect it might be something similar to Aricept, which is used in Europe. I see that like Aricept, Namenda is specific for Alzheimer's. However, over here Aricept is sometimes prescribed for people with other kinds of dementia, as it occasionally helps them too. My friend was put on it for a few months but it made no difference and was eventually stopped because it gave her diarrhoea. In her case, there was clearly no connection with stopping the Alzheimer's medication and her becoming aggressive, as the latter didn't start till at least six months later. It was stopping the antipsychotic risperidone that sent her completely over the edge.

      I don't know what would have been in the Exelon patch, as Exelon is the name of a drug company rather than a medication.

      I honestly don't think it makes much difference whether one has a diagnosis of the type of dementia or not, except that the insurance will only cover drugs like Aricept or Nemenda in some countries if there's a firm diagnosis of Alzheimer's. My friend had multiple MRIs plus the hour-long neuro-psychological test, both of which confirmed that she definitely didn't have Alzheimer's. That meant she had to bear the cost of the Aricept herself, but I was paying her bills (via a PoA) and I noticed the cost was quite low anyway.

      In any case, Alzheimer's quite often co-exists with vascular or other kinds of dementia. Also, since most dementias cause pretty much the same range of symptoms, it usually doesn't make all that much difference. If your mother didn't respond to the Namenda, which is specific for Alzheimer's, there's probably little point in pressing for an accurate diagnosis. This is especially true if she's very anxious and agitated, as it's unlikely she'd tolerate an MRI.

      My mother never got a firm diagnosis either. She lived in the UK, where availability of specific testing is strictly rationed. It took me years even to get her GP to refer her to a geriatric specialist, and even then they only did a CT scan, which is much less sensitive. However, the specialist told me she could see multiple areas of ischaemic damage (i.e. caused by interrupted blood supply) which suggested that my mother had had a lot of TIAs (transient ischaemic attacks, or mini-strokes). She couldn't guarantee that she didn't have Alzheimer's as well, but thought it was very unlikely, as my mother didn't seem to have any more brain shrinkage than would have been normal for an 89-year-old.

      An autopsy was offered after her death - the one 100% way of confirming Alzheimer's - but I refused. I felt she'd been through enough in life, and in any case the only value in knowing is that Alzheimer's is more likely to be hereditary than other dementias. Since I was already taking most of the lifestyle measures to reduce my own risk of Alzheimer's and couldn't do much more, I decided I'd rather not know!

      I'm afraid all three of you have a difficult road ahead of you. Still, at least your mother seems to be in a good assisted-living facility, and has you and your sister to take care of her.

    • Posted

      Lily,

      So much makes sense now. We never had my Mother diagnosed as well We were not going to put my Mom through further testing or an MRI. I feel much better now about the Ativan. My sister's friend's mom is on it and it has helped. They have similar personalities. 

      I too just ordered some books on how to prevent this horrible disease. My Mom's sister had it and now my cousin, her daughter is showing signs. She is 65. 

      Thank you so much for all your help! I'm so glad that I found this forum!

  • Posted

    Hello Diane,  Having cared for my mother for 2 years, I know exactly what you're going through.  She was diagnosed with a mix of dementia and Alzheimers at the age of 89, three years ago.  The first year wasn't too bad, but then she was getting very verbally aggressive - she told one doctor I was poisoning her and she called me horrible names.  It got very bad one day when she locked herself in a room and I had a succession of paramedics, Caredoctors, yes, even the police and eventually a locksmith come into the house.  We finally got her out and her GP told her straight out that but for me looking after her (with the help of professional carers), she'd be in a nursing home.  He prescribed her Ativan - just a small dose - but it made life so much easier.  Yes, there were still some bad days, but life was bearable and I am happy to say, that she was able to remain at home, where she died in her sleep January last year.  I do hope that you can perhaps discuss the matter with your Mother's doctors, after all, everyone is different.  Starting on a low dosage is a good idea.  It is very hard watching one's Mother go through this horrible illness, and I wish you the very best,  Stefania

    • Posted

      Stefanai

      Thank you so much for all your advice. i really think we need to stay away from Risperodone. I'm so sorry that you have had to go through so much with your Mother. You give me hope that Ativan may help make life easier for my Mother. I think a low dose would be the way to go. My Mom never took much medication and has never been diagnosed with depression.

      Thank you again for your help!

      Diane

  • Posted

    I'm so sorry to hear about your mom. We haven't had any experience taking either of the medications. I hope it goes well for you and your mom.

    • Posted

      Thank you. They ended up putting her on Seroquel which I'm not sure that I'm happy about.

    • Posted

      Hi Diane,

      As I'm sure you've found out for yourself, Seroquel (generic name quetiapine) is another atypical antipsychotic, in the same group as risperidone. I don't know anyone who's taken it, but I do know that it generally causes fewer side-effects than risperidone and some of the other drugs in the group.

      I'm wondering how your mother is tolerating the Seroquel, and whether you feel it's having any effect in calming her down. Also, is she still on Ativan? It's quite common to combine an antipsychotic with a benzo when treating agitated dementia patients.

      Finally, do you know what dose of Seroquel she's on? Hopefully they've started her on a low dose, unlike my poor friend, who was put on near-maximum dose of risperidone from the outset. From what I've read about it, Seroquel is far less likely to cause Parkinson-like side-effects than risperidone, so that's something to be grateful for at least.

      I hope you and your sister are bearing up, and your mother isn't suffering too much.

    • Posted

      Lilly, 

      Yes, I did some research and I know Seroquel is an anti psychotic and says it should not be given to Demetia or Alzheimer's patients. The doctor was very reluctant to put her on just Ativan because of increased falls in older patients. i have read the same thing about Seroquel. I have a call into the doctor about this right now. i believe it's a low dose, once in the morning and once in the evening. I will check with my sister. She has been on it for week and I guess has been on half tablet at night for a while to help her sleep.

      The issue we are having is that my Mother is afraid to sleep in her bed and either sleeps upright in the chair in her living room or has been going across the hall to sleep in her friend's room. Understandably the family of her friend is upset. i visited my Mom for 5 days last week and I thought she had stopped sleeping across the hall. Apparently this past weekend she slept there and the family wants us to put my Mother in Memory Care if she continues. The staff at the Assisted Living says she is not ready for Memory Care. She still has her routine where she comes down for meals and they believe putting her in Memory Care and taking away that independance will put my Mother over the edge.

      Thank you for all your help and kind words.

      Diane

    • Posted

      Is that the doctor's prescription? Well then we just have to make sure she takes the right amount of dosage to avoid unnecessary complications.

    • Posted

      Jake 

      She is on 25mg, twice a day. I'm going to do some more research, but we have been told that it's a low dose.

    • Posted

      Hi Diane,

      That is indeed the minimum dose, at least for an adult with schizophrenia. Elderly people may require less, but unfortunately dementia is never included in the list of recommended dosages per condition since this is an off-label use. (Which doesn't stop seroquel and other, much more dangerous, antipsychotics being prescribed for dementia sufferers all over the world.)

      At least your mother's doctors are doing it the right way round - starting on minimum dose and possibly increasing it - rather than starting on maximum dose then trying to reduce it, as was the case for my friend when she was given risperidone.

      I think the most important question is whether or not Seroquel is helping your mother. If it's making her less aggressive with staff and other residents, this will help her to remain calmer. As far as I can make out from my own research, it's less likely to cause unpleasant side-effects than risperidone.

      Try and do as much research as you can, insist on your right to know exactly what drugs your mother is on, and in what dosages, and don't allow the staff to intimidate you. That way, you'll be able to offer her maximum support.

    • Posted

      Hi Lily

      They say she seems to be tolerating it well. She has never really been aggressive to the staff or other residents. Just more adamant and stubborn about doing things like taking a shower and changing her clothes. That's why i'm not really sure why they put her on an antipsychotic drug. She has come down and told the from desk that people are trying to kill her, but I think that's do to the staff forcing her into the shower. She told me about it and was very upset. When I was there a few weeks ago she seemed to be more mellow.

      I appreciate all your help and advice.

      Diane

    • Posted

      Yeah it is prescribed to take low dosage at first then probably increase it later on.  Yes, we should do our own research to ensure that the patient is taking the right medicines.
    • Posted

      Have you heard of the supplement Neurella? It has 12 supplements in one pill that is recommended in the ReCODE protocol for AD patients. I was wondering if that would help my Mom and was thinking about taking it too.
    • Posted

      No, I haven't heard of that Dianne. Just try to do some research, maybe it will have good effects on her.

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