My dementia-struck wife amidst the mess of medicines

[Palerider]

So no qualifications then

That is your assumption. Like I said I agree to disagree, The matter is closed because we are leaving the point of the thread.

 

[JaxG]

I would just like to add that my husband was prescribed Risperidone and it has changed our lives. The last 5 years have been brutal, constant verbal aggression and abuse, but physical assaults too. We had reached a point where SS and my doctor had suggested that the only solution was for me to leave, for my own safety and sanity. Whilst OH no longer has capacity, he was not considered bad enough for full time care so I would have lost my home and financial security, not to mention what it would have done to him. I know this is not licenced for dementia but it has been transformative and I am so relieved that we got the chance to try it.

 

[hamoudou]

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.

You explained well the incongruous use of antipsychotics in dementia. This said, from my experience as a carer for my spouse, I understood consultants do not see eye to eye. Psychiatrists claim that the patient with dementia does not need to consult with a neurologist on grounds that what's needed is psychiatric symptomatic treatment due to the nonexistence of medication targeting dementia. As for neurologists, some of them claim it's their job not a psychiatrist's even though they themselves prescribe antipsychotics off licence, which means they follow the same symptomatic approach as psychiatrists do! While others keep scheduling cyclical appointments for the patients, i.e. the specialised hospital in my country, in a bid to compile clinical data for research and statistical purposes, and when you tell them you've consulted with a psychiatrist, they remind you it's they that are in charge, not a practitioner with a speciality other than neurology.

 

[Palerider]

You explained well the incongruous use of antipsychotics in dementia. This said, from my experience as a carer for my spouse, I understood consultants do not see eye to eye. Psychiatrists claim that the patient with dementia does not need to consult with a neurologist on grounds that what's needed is psychiatric symptomatic treatment due to the nonexistence of medication targeting dementia. As for neurologists, some of them claim it's their job not a psychiatrist's even though they themselves prescribe antipsychotics off licence, which means they follow the same symptomatic approach as psychiatrists do! While others keep scheduling cyclical appointments for the patients, i.e. the specialised hospital in my country, in a bid to compile clinical data for research and statistical purposes, and when you tell them you've consulted with a psychiatrist, they remind you it's they that are in charge, not a practitioner with a speciality other than neurology.

I concur @hamoudou

 

[hamoudou]

I would just like to add that my husband was prescribed Risperidone and it has changed our lives. The last 5 years have been brutal, constant verbal aggression and abuse, but physical assaults too. We had reached a point where SS and my doctor had suggested that the only solution was for me to leave, for my own safety and sanity. Whilst OH no longer has capacity, he was not considered bad enough for full time care so I would have lost my home and financial security, not to mention what it would have done to him. I know this is not licenced for dementia but it has been transformative and I am so relieved that we got the chance to try it.

Risperidone !!! So much the better if it helped your husband get over some difficulties.
My wife was prescribed this drug, which did nothing to her but make her incontinent. To add insult to injury, the consultant prescribed a repeat of the course of risperidone. I resisted on grounds it's not advised for a patient with dementia to take this drug for over 6 weeks, else it would engender cardiovascular accidents etc., but the doctor belied the information, assuring us it's the only effective medication!!!

 

[Lawson58]

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)

Considering that a diagnosis of Alzheimer’s can only be confirmed by autopsy, then any diagnosis may be open to question. As many people diagnosed with Alzheimer’s do not undergo an autopsy, then there a lot of assumptions being made.

My husband doesn’t fit the LATE picture either.

 

[Lawson58]

n.neurology.org

By Daniel Ferreira et al.

 

[canary]

Hi @Lawson58

Daniel Ferreira has done some very interesting research, but I dont seem to be able to find this paper. Could you give a link?

 

[nitram]

Hi @Lawson58

Daniel Ferreira has done some very interesting research, but I dont seem to be able to find this paper. Could you give a link?

Put name in search box on site then do ctrl-f on a phrase in result and bingo

Biological subtypes of Alzheimer disease

Objective To test the hypothesis that distinct subtypes of Alzheimer disease (AD) exist and underlie the heterogeneity within AD, we conducted a systematic review and meta-analysis on AD subtype studies based on postmortem and neuroimaging data. Methods EMBASE, PubMed, and Web of Science...

n.neurology.org

 

[canary]

Thank you @nitram
I put the author and "Alzheimers subtype" in the search, but it didnt seem to bring this up.

Its a fascinating paper

 

[Palerider]

Considering that a diagnosis of Alzheimer’s can only be confirmed by autopsy, then any diagnosis may be open to question. As many people diagnosed with Alzheimer’s do not undergo an autopsy, then there a lot of assumptions being made.

My husband doesn’t fit the LATE picture either.

I don't disagree with you at all. Diagnosis on autopsy was previously the only way of confirming Alzheimer's Disease that is true, but with research into disease modifying therapies new approaches are now available in diagnosis and part of the the research has continued to question if these new approaches can help to finally confirm or a null the amyloid cascade hypothesis without the need for autopsy. I agree with you putting diagnosis aside so far to date Alzheimer's and what we know remains hypothetical, as the main cause of the disease remains unknown plus there are so many other unknown dementia's yet to be formally classified.

 

[Palerider]

Biological subtypes of Alzheimer disease

Objective To test the hypothesis that distinct subtypes of Alzheimer disease (AD) exist and underlie the heterogeneity within AD, we conducted a systematic review and meta-analysis on AD subtype studies based on postmortem and neuroimaging data. Methods EMBASE, PubMed, and Web of Science...

n.neurology.org

It's an interesting explanation to a long standing problem of heterogeneity in Alzheimer's disease and the development of disease modifying therapies. It's something that has been an ongoing problem if you read around the new drug development such a Donemab.

I just wonder if we stopped sticking to the old name of Alzheimer's and changed how we label this disease if it would make any difference in how people view it. Two diseases can seem very similar but actually be very different. For example, the US Diagnostic and Statistical Manual of Mental Disorders has changed its wording from dementia to neurocognitive disorder, which is more useful. Perhaps in time we might see Alzheimer's as a name disappear and new more descriptive name appear as we learn more about these diseases and how to classify them, that then might also mean reframing what constitutes Alzheimer's apart from other forms of dementia including sub-types -things might in the future become much more specific rather than as they are currently more generalised -if that makes sense. It takes a lot of reading and rereading papers and articles to realise not much ground has been gained, but no matter how small the gain is, we are that little bit closer.

 

[Lawson58]

Biological subtypes of Alzheimer disease

Objective To test the hypothesis that distinct subtypes of Alzheimer disease (AD) exist and underlie the heterogeneity within AD, we conducted a systematic review and meta-analysis on AD subtype studies based on postmortem and neuroimaging data. Methods EMBASE, PubMed, and Web of Science...

n.neurology.org

It's an interesting explanation to a long standing problem of heterogeneity in Alzheimer's disease and the development of disease modifying therapies. It's something that has been an ongoing problem if you read around the new drug development such a Donemab.

I just wonder if we stopped sticking to the old name of Alzheimer's and changed how we label this disease if it would make any difference in how people view it. Two diseases can seem very similar but actually be very different. For example, the US Diagnostic and Statistical Manual of Mental Disorders has changed its wording from dementia to neurocognitive disorder, which is more useful. Perhaps in time we might see Alzheimer's as a name disappear and new more descriptive name appear as we learn more about these diseases and how to classify them, that then might also mean reframing what constitutes Alzheimer's apart from other forms of dementia including sub-types -things might in the future become much more specific rather than as they are currently more generalised -if that makes sense. It takes a lot of reading and rereading papers and articles to realise not much ground has been gained, but no matter how small the gain is, we are that little bit closer.

I have never really understood why the name change is really going to make much of a difference. The term neurocognitive disorder is still a general term covering a multitude of disorders in the same way dementia does. I guess that many people consider the word ’dementia’ to be associated with memory loss or worse the insanity of yesteryears. But I don’t think giving it a complex name is going to change the general public’s view or understanding until they themselves have some experience of it themselves, either personally or for a loved one.

Change only comes when you can manage to take people along with you and using a word that has little connection to people is a bit of a pointless exercise. I think too that until research can clarify more accurately and define what is Alzheimer’s and what isn’t that perhaps it’s worth waiting until we ourselves can attach labels to the various types that are recognisable to humble human beings.

 

[Palerider]

I have never really understood why the name change is really going to make much of a difference. The term neurocognitive disorder is still a general term covering a multitude of disorders in the same way dementia does. I guess that many people consider the word ’dementia’ to be associated with memory loss or worse the insanity of yesteryears. But I don’t think giving it a complex name is going to change the general public’s view or understanding until they themselves have some experience of it themselves, either personally or for a loved one.

Change only comes when you can manage to take people along with you and using a word that has little connection to people is a bit of a pointless exercise. I think too that until research can clarify more accurately and define what is Alzheimer’s and what isn’t that perhaps it’s worth waiting until we ourselves can attach labels to the various types that are recognisable to humble human beings.

Indeed I take your point @Lawson58. I was just throwing it out there more from a researcher / professional point of view, but you rightly raise the other side of the coin so to speak.