My dementia-struck wife amidst the mess of medicines

[hamoudou]

Hello to the community,
A year ago my wife was diagnosed with dementia (either FTD or an atypical type of Alzheimer's, the doctors said). She's been administered the antidepressant ascitalopram for nearly two years now. Since the dementia diagnosis, she's been prescribed risperidone, olanzapine, and clozapine, in a row, but none of these antipsychotics has done any good to her delirium.
On the contrary, she's suffered a bunch of side effects...
As the doctors have not prescribed any of the drugs supposed to slow down neuronal degeneration, and as I've found out throughout lots of readings that Exelon (ravistigmine) could be of some help (even though it could be harmful if the diagnosis is faulty) to slow down the progress of such pathology.

My question is: Besides Alzheimer's for which this drug is bound to work, has anyone of you tried this medicine to help a patient with FTD (in the first place), or with Body Lewy dementia?

 

[canary]

Hello @hamoudou and welcome to Talking Point.

Firstly, I am surprised that further tests, like a PET scan, has not been done to see whether this is atypical Alzheimers (aka behavioural variant Alzheimers) because if it is then drugs like donepezil or rivastigmine might help. They dont slow down the degeneration, though - what they do is stimulate the brain so that the person can make the most of what they still have. The Alzheimers will still progress underneath.

Because they work by stimulating the brain, if they are used for FTD then it can overstimulate them and they can end up with aggression, hypersexuality and/or mania. Either that, or they do nothing at all. I dont know about LBD, although I have not heard that it is recommended for it.

Lots of drugs usually used for FTD can end up just causing side-effects, although I have heard that atypical antipsychotics are best.

Im sorry I cant be of more help. We cant diagnose, or advise particular drugs, all I can do is give general advice. You really need to speak to your wifes doctor.

 

[hamoudou]

@canary
Thank you for your reactivity. Your view is very instructive. Actually, an appointment with specialized hospital doctors is scheduled for early September. I hope they'll undertake a further test (as a matter of fact, a few months ago my wife wouldn't undergo the spine test ...).
As for atypical antipsychotics (the three of them) endangered my wife's life with their side effects.

 

[Palerider]

Hello to the community,
A year ago my wife was diagnosed with dementia (either FTD or an atypical type of Alzheimer's, the doctors said). She's been administered the antidepressant ascitalopram for nearly two years now. Since the dementia diagnosis, she's been prescribed risperidone, olanzapine, and clozapine, in a row, but none of these antipsychotics has done any good to her delirium.
On the contrary, she's suffered a bunch of side effects...
As the doctors have not prescribed any of the drugs supposed to slow down neuronal degeneration, and as I've found out throughout lots of readings that Exelon (ravistigmine) could be of some help (even though it could be harmful if the diagnosis is faulty) to slow down the progress of such pathology.

My question is: Besides Alzheimer's for which this drug is bound to work, has anyone of you tried this medicine to help a patient with FTD (in the first place), or with Body Lewy dementia?

I hope I can give some clarity

First of all there is no such thing as an 'Alzheimer's type' -it is either Alzheimer's or it is not, that is unequivocable, to add to the conundrum there are some very rare types of dementia that are not at all understood and there are dementias that pathologically are similar to Alzheimer's but they are differentiated.

The medications you have had to see your wife endure are not formulated for treatment in dementia, they are formulated for mental health conditions which are not the same as the physical disease dementia takes, so any psychiatric medication is used off licence and on a trial by error basis. There is no guidance for use of these drugs in the disease of dementia and that ultimately leads to a significant question -should they be used and if so in what way should they be used?

There is currently no medication that changes the course of the disease or that undoes the neuronal damage the disease causes whatever the type of dementia. Further some of the new medication boasted about that may come online also has significant drawbacks and is only for use in pure Alzheimer's cases anyway.

The continual grip of the loose straws on medication never ceases to amaze me and I think sometimes you just have to be brave and ask in the end taking everything into consideration does this medication serve any useful purpose and if not how else can a person without dementia co-exist with a person with dementia.

 

[Banjomansmate]

The Banjoman had Lewy Body Dementia and he was given Rivastigmine patches. I don’t know if they helped at all but he deteriorated over three years or so. It might well have been quicker if he hadn’t used them, there is no way of knowing!

 

[sapphire turner]

My husband was never properly diagnosed, as nhs scans were not available. He started off with donepezil which made him very angry and aggressive. He was changed to memantine which made him much more accepting and calm, although still very confused. It is certainly worth agitating for medication review and change if things are going badly. It’s not the answer to everything for everyone but it’s definitely worth a trial if things are getting difficult. Good luck with it! Xx

 

[Palerider]

I think as difficult as it may be we also have to consider the effect these drugs have on the person with dementia and the implications of imposing medication with no ability to deny them -i.e we assume certain things based on our side of the effect but not the PWD. I know this is hard but there comes a point when we morally have to question in who's best interests are we acting? The central focus is to always act in the best interests of the person with dementia, but all to often the act is in the best interests of everyone else but the person with dementia.

We cannot have our cake and eat it, Unfortunately the best evidence is not on medication but change of environment which of course means placing someone we love into 24/7 care. I personally hate that idea but I am also on the living end of challenging behaviour in a person with dementia and 24/7 care in the right environment has meant little or no medication as hard as it may emotionally be

 

[Lawson58]

I hope I can give some clarity

First of all there is no such thing as an 'Alzheimer's type' -it is either Alzheimer's or it is not, that is unequivocable, to add to the conundrum there are some very rare types of dementia that are not at all understood and there are dementias that pathologically are similar to Alzheimer's but they are differentiated.

The medications you have had to see your wife endure are not formulated for treatment in dementia, they are formulated for mental health conditions which are not the same as the physical disease dementia takes, so any psychiatric medication is used off licence and on a trial by error basis. There is no guidance for use of these drugs in the disease of dementia and that ultimately leads to a significant question -should they be used and if so in what way should they be used?

There is currently no medication that changes the course of the disease or that undoes the neuronal damage the disease causes whatever the type of dementia. Further some of the new medication boasted about that may come online also has significant drawbacks and is only for use in pure Alzheimer's cases anyway.

The continual grip of the loose straws on medication never ceases to amaze me and I think sometimes you just have to be brave and ask in the end taking everything into consideration does this medication serve any useful purpose and if not how else can a person without dementia co-exist with a person with dementia.

During the years that my husband was being treated by a geriatrician and tested extensively by a doctor of neuropsychology on more than one occasion, his initial diagnosis was of atypical Alzheimer’s which simply meant that the consultant believed that he had Alzheimer’s but that his symptoms didn’t fit with the usual patterns.

Then the consultant thought it was a fronto variant form and the neuropsychologist stated that in her opinion it was Alzheimer’s, plain and simple.

Then after further testing, the neuropsychologist stated in her opinion letter that it was non amnesiac Alzheimer’s with a detailed explanation of her findings and why she had come to that conclusion.

Then after further testing, the consultant concluded that it was non classical Alzheimers but eighteen months later, he decided that my husband was non diagnosed.

So the point is that these highly qualified people have the opinion that there are sub types in Alzheimer’s and would disagree with you about it being Alzheimer’s or it is not.

My husband, I believe has some form of dementia, some symptoms resembling Alzheimer’s but different in many ways. There are codes to be used to describe where dementia patients fit and according to that my husband could be F00.9 Dementia in Alzheimer’s or G30.9 Unspecified Alzheimer’s.

 

[sunshine chrissy]

I think as difficult as it may be we also have to consider the effect these drugs have on the person with dementia and the implications of imposing medication with no ability to deny them -i.e we assume certain things based on our side of the effect but not the PWD. I know this is hard but there comes a point when we morally have to question in who's best interests are we acting? The central focus is to always act in the best interests of the person with dementia, but all to often the act is in the best interests of everyone else but the person with dementia.

We cannot have our cake and eat it, Unfortunately the best evidence is not on medication but change of environment which of course means placing someone we love into 24/7 care. I personally hate that idea but I am also on the living end of challenging behaviour in a person with dementia and 24/7 care in the right environment has meant little or no medication as hard as it may emotionally be

Oh what a great reply,every word you said is what is in my mind everyday.I'm getting to the point of not coping as a carer right now but can't let go and admit it.I can't give my OH what he needs anymore and the constant changes of medication do nothing to help me or him,I just don't know what to do for the best for him or me right now,he has bvFTD,no one seems to know what's best for this type of dementia,we've seen countless consultants,had every type of scan,test etc,I can't fault the attention we've had but here we are,he's essentially"gone"now,he's only 62.

 

[Chocco]

Hello to the community,
A year ago my wife was diagnosed with dementia (either FTD or an atypical type of Alzheimer's, the doctors said). She's been administered the antidepressant ascitalopram for nearly two years now. Since the dementia diagnosis, she's been prescribed risperidone, olanzapine, and clozapine, in a row, but none of these antipsychotics has done any good to her delirium.
On the contrary, she's suffered a bunch of side effects...
As the doctors have not prescribed any of the drugs supposed to slow down neuronal degeneration, and as I've found out throughout lots of readings that Exelon (ravistigmine) could be of some help (even though it could be harmful if the diagnosis is faulty) to slow down the progress of such pathology.

My question is: Besides Alzheimer's for which this drug is bound to work, has anyone of you tried this medicine to help a patient with FTD (in the first place), or with Body Lewy dementia?

My husband was diagnosed with Lewy Body Dementia in Oct 22 and was put on Rivastigmine tablets 3mg twice a day.
It seemed to make a bit of a difference until April 2023 when there was a noticeable decline. The dosage was increased to 4.5mg twice a day but made no difference at all to his general confusion, mild hallucinations and Imposter Syndrome. The new consultant at the Older Adult Mental Health unit wanted him to go on Quitiapine, an anti-psychotic which I resisted because his behaviour was not aggresive or psychotic and even the Lewy Body Dementia Socy said they should be used very cautiously or prefereably avoided. The consultant then wanted to put him on Sertralin which is an anti-depressant, again I resisted because he is not depressed and has always been anti anti-depressants. I asked the consultant to consider either a change to Rivastigmine to another dementia medication like Memantine or an increase in the dosage of R'mine but was told no. I think I am probably regarded as a bit of a pain in the **** now!
I realise that I am not a highly trained professional and have no expertise in medication but I do feel justified in questioning the decisions made for my husband because he can't do it himself.
I know that nothing is going to stop the disease from progressing but felt that if there was a dementia drug out there that could ease his symptoms and I guess lessen the difficulties for me, we should try it but right now I just feel like giving up.

 

[sapphire turner]

Is it really such a terrible thing to try medication for my loved one to make things less awful for me? I did have to persuade him to try first donepezil (which unfortunately made things worse) and then memantine (which quickly made things much better)
I am sure it is his human right to become an angry and aggressive person if he wants to, but I couldn’t live with him being like that (I was really afraid) and he couldn’t manage on his own. He would end up having to go into care which he would absolutely hate.
I think he would benefit from antidepressants as well but he says absolutely no to that, so memantine is our compromise position.
I know there will come a time when we reach the end of the road with medication but for the time being it is giving us some more good quality time together.

 

[Palerider]

I am sure it is his human right to become an angry and aggressive person if he wants to, but I couldn’t live with him being like that (I was really afraid) and he couldn’t manage on his own.

Hi @sapphire turner

Just to say I was not endorsing angry and aggressive behaviour either, what I was politely trying to say is that the best approach is a change of environment when things reach a point that are no longer manageable as opposed to using medications that were never meant to be used in dementia with variable benefit. At the end of the day it is for each of us to assess our own situation and decide on which path we are willing to take as a carer.

 

[Palerider]

During the years that my husband was being treated by a geriatrician and tested extensively by a doctor of neuropsychology on more than one occasion, his initial diagnosis was of atypical Alzheimer’s which simply meant that the consultant believed that he had Alzheimer’s but that his symptoms didn’t fit with the usual patterns.

Then the consultant thought it was a fronto variant form and the neuropsychologist stated that in her opinion it was Alzheimer’s, plain and simple.

Then after further testing, the neuropsychologist stated in her opinion letter that it was non amnesiac Alzheimer’s with a detailed explanation of her findings and why she had come to that conclusion.

Then after further testing, the consultant concluded that it was non classical Alzheimers but eighteen months later, he decided that my husband was non diagnosed.

So the point is that these highly qualified people have the opinion that there are sub types in Alzheimer’s and would disagree with you about it being Alzheimer’s or it is not.

My husband, I believe has some form of dementia, some symptoms resembling Alzheimer’s but different in many ways. There are codes to be used to describe where dementia patients fit and according to that my husband could be F00.9 Dementia in Alzheimer’s or G30.9 Unspecified Alzheimer’s.

There are still problems around diagnosis and I agree opinions will vary, but they are only an opinion. If it is not classically Alzheimer's then it can't be called Alzheimer's and there is a more newer recognised dementia type that mimics Alzheimer's called Limbic-predominant age-associated TDP-43 encephalopathy (LATE)

 

[Palerider]

My husband was diagnosed with Lewy Body Dementia in Oct 22 and was put on Rivastigmine tablets 3mg twice a day.
It seemed to make a bit of a difference until April 2023 when there was a noticeable decline. The dosage was increased to 4.5mg twice a day but made no difference at all to his general confusion, mild hallucinations and Imposter Syndrome. The new consultant at the Older Adult Mental Health unit wanted him to go on Quitiapine, an anti-psychotic which I resisted because his behaviour was not aggresive or psychotic and even the Lewy Body Dementia Socy said they should be used very cautiously or prefereably avoided. The consultant then wanted to put him on Sertralin which is an anti-depressant, again I resisted because he is not depressed and has always been anti anti-depressants. I asked the consultant to consider either a change to Rivastigmine to another dementia medication like Memantine or an increase in the dosage of R'mine but was told no. I think I am probably regarded as a bit of a pain in the **** now!
I realise that I am not a highly trained professional and have no expertise in medication but I do feel justified in questioning the decisions made for my husband because he can't do it himself.
I know that nothing is going to stop the disease from progressing but felt that if there was a dementia drug out there that could ease his symptoms and I guess lessen the difficulties for me, we should try it but right now I just feel like giving up.

It is a tough journey to undertake and to be witness to watching someone we love become someone we no longer know. I would have given anything if it meant keeping my mum at home, but the reality is far different from our expectations unfortunately.

The bottom line is that no one needs to be a professional to have their own take on the use of unlicensed medications, Google can help most of us gauge what these drugs are and the intended effect used off-license in dementia. The issue often is the difference in professional opinion rather than what the actual evidence says and each professional will have their own preference based on their own experiences. Ultimately there is more that is unknown than known in this aspect of dementia medication and I think from my own experiences it is always wise to ask questions and challenge the decisions our professionals make rather than just accept what we are told. The other side of the coin is that there is no way of knowing unless a drug is trialled, for some this can be an immediate desired effect, but for others it can mean months of unwanted side effects and trialling other drugs with the same outcome. Each person with dementia is different, and responds in different ways to medications, so there is no one answer that can offered on a forum. What matters is that while we try these medications we keep at the back of our mind this is someone we love and care for and from that perspective we are resolved to draw a line at some point.

 

[sapphire turner]

When you say unlicensed medications I presume that you mean licensed medications that have not had the clinical trials done to cover their licensed use in dementia. That is not to say that they haven’t had extensive patient safety trials and a lot of detailed information provided on their likely side effects, just not in dementia patients. The medicines being used for these difficult symptoms of dementia (once medicines licensed for dementia have been tried or considered inappropriate) have mainly been around for years but there will never be clinical trials done to enable them to be licensed for use in dementia, for two reasons. Firstly it would be unethical to do a trial on patients with moderate to severe dementia because of their potential (likely) lack of capacity to consent to a trial. Secondly most antipsychotics and antidepressants have run out of patent (they have been around so long that any pharmaceutical company can apply to make a generic copy of them to sell) which means that any company who could somehow do these trials (which would cost a lot of money) would not be able to recoup their investment through increased sales of the drug.
So it depends whether you are prepared to trust your loved one’s doctor to do the best for them - and ask them to explain anything you are concerned about - or whether you trust Dr Google more.

 

[hamoudou]

My husband was diagnosed with Lewy Body Dementia in Oct 22 and was put on Rivastigmine tablets 3mg twice a day.
It seemed to make a bit of a difference until April 2023 when there was a noticeable decline. The dosage was increased to 4.5mg twice a day but made no difference at all to his general confusion, mild hallucinations and Imposter Syndrome. The new consultant at the Older Adult Mental Health unit wanted him to go on Quitiapine, an anti-psychotic which I resisted because his behaviour was not aggresive or psychotic and even the Lewy Body Dementia Socy said they should be used very cautiously or prefereably avoided. The consultant then wanted to put him on Sertralin which is an anti-depressant, again I resisted because he is not depressed and has always been anti anti-depressants. I asked the consultant to consider either a change to Rivastigmine to another dementia medication like Memantine or an increase in the dosage of R'mine but was told no. I think I am probably regarded as a bit of a pain in the **** now!
I realise that I am not a highly trained professional and have no expertise in medication but I do feel justified in questioning the decisions made for my husband because he can't do it himself.
I know that nothing is going to stop the disease from progressing but felt that if there was a dementia drug out there that could ease his symptoms and I guess lessen the difficulties for me, we should try it but right now I just feel like giving up.

@Chocco
From both our experiences, we gather that consultants tend to prescribe a medicine this minute then prescribe another the next minute, which proves how disorienting these kinds of pathology are. In all, we can do nothing but wish for some pharmaceutical breakthrough and in the meantime try therapies that involve humane action.

 

[Palerider]

When you say unlicensed medications I presume that you mean licensed medications that have not had the clinical trials done to cover their licensed use in dementia. That is not to say that they haven’t had extensive patient safety trials and a lot of detailed information provided on their likely side effects, just not in dementia patients. The medicines being used for these difficult symptoms of dementia (once medicines licensed for dementia have been tried or considered inappropriate) have mainly been around for years but there will never be clinical trials done to enable them to be licensed for use in dementia, for two reasons. Firstly it would be unethical to do a trial on patients with moderate to severe dementia because of their potential (likely) lack of capacity to consent to a trial. Secondly most antipsychotics and antidepressants have run out of patent (they have been around so long that any pharmaceutical company can apply to make a generic copy of them to sell) which means that any company who could somehow do these trials (which would cost a lot of money) would not be able to recoup their investment through increased sales of the drug.
So it depends whether you are prepared to trust your loved one’s doctor to do the best for them - and ask them to explain anything you are concerned about - or whether you trust Dr Google more.

I think you have misunderstood, medications used off-license means that they are used to treat conditions they were never designed to treat and therefore there are no clinical trials to support their use off-license. The use of these drugs is by opinion and trial and error and has no actual evidence base. The point given that there is no actual intention for use or evidence of use in dementia is why there needs to be some caution in the use of such medications. Contrary to your misinformed response, PWD are used in clinical trials for drugs that target people with dementia as in the newer possibly soon to be available disease modifying therapies. Incidentally, the four outdated drugs such as donepezil designed for use in dementia all went to clinical trial because it was ethically right to trial them. It would be ethically wrong to trial a drug for a purpose it was not intended for.

The effect of any drug is essentially what the person taking that drug is able to report as beneficial and not by assumptive means third party. If there is any potential benefit of using a drug off-license then it needs to be considered carefully and there also needs to be recognition of the limitations in this approach in the use of medications not intended for use in dementia.

I appreciate the desperate situation many of us face myself included, but there has to be a rational approach in how psychiatric drugs are used in a condition they were never intended to be used in. With respect to Google, most people are more than able to sensibly access information and ask their loved ones doctor the best and most appropriate questions.

 

[sapphire turner]

Oh wow I feel thoroughly mansplained! I was a qualified pharmacist for 40 years before I retired- what are your qualifications?

 

[Palerider]

Oh wow I feel thoroughly mansplained! I was a qualified pharmacist for 40 years before I retired- what are your qualifications?

You are entitled to your own opinion and I am sorry if I have challenged that. Let's leave the matter here and agree to disagree.

 

[sapphire turner]

So no qualifications then