LATE dementia

[Lawson58]

My husband was diagnosed with atypical Alzheimer's over five years ago. Then the term 'atypical' meant that he didn't fit the usual picture of the disease. Since then, he has been labeled 'frontovariant', 'nonamnesiac' and recently 'nonclassical'. all of which convinced me that nobody really knew where he fitted into the overall picture of Alzheimer's.

From my discussions with our GP and geriatrician, from reading the many threads on TP and and an occasional delve into Google, it seems to me that his illness is very different to most PWD. He has now lost most of the memories of his first thirty years of life but his short term memory functions well enough for him to still play bridge several times a week. His decline is very slow and much of that could be attributed to or aggravated by his poor physical health.

One of the things I have been reading about recently is a disease called LATE which mimics Alzheimer's though the causes are different. Most of the articles state that onset of LATE starts at about 80+ but some of them say that it could be earlier than that.

My husband turns 80 in a few weeks so I am a little confused but it confirms my suspicions that there is so much to still learn about these diseases. Something like this would explain why he is so different to other people with Alzheimer's . He lacks the judgement and anticipation required to drive a car safely, he cannot use a mobile phone though he can use an ordinary phone and can do a limited range of things on the computer. He cannot see that some of the things he says don't make sense, is just now starting to search for words, lacks empathy and can be quite paranoid.

So I have been wondering if any of our knowledgeable TPers have any experience of LATE or are aware of anything more available than what I have found so far on Dr, Google. OH has his next visit with his geriatrician in December so I will be asking a whole lot of questions during my private little chat we have while he is having his memory tests.

 

[Kevinl]

Currently LATE can only be confirmed after death as far as I know.
My wife was diagnosed with "mixed, atypical" Alzheimer's at 55 and after a few scans it never got more specific than that. But even if they had been able to give an exact diagnosis I can never see how that who have benefited me, I have to deal with what's happening, not why it's happening.
Over the nearly 4 years my wife's been in care I've seen dozens of people first hand on a daily basis and I've come to the conclusion that the diagnosis isn't important, it's how the disease affects the person that is the important thing and how you can help them live the best they can within their limitations.
K

 

[canary]

The terms "atypical", "frontovariant" and "non classical" are all terms for a type of Alzheimers that doesnt follow the normal pathway of Alzheimers which starts with affecting the short-term memory, but instead starts in the frontal lobes. The frontal lobes control decision making and judgement, ability to perform tasks, emotions, long term memory. I have always thought that your husband sounded like he had frontal lobe problems.

 

[Lawson58]

Currently LATE can only be confirmed after death as far as I know.
My wife was diagnosed with "mixed, atypical" Alzheimer's at 55 and after a few scans it never got more specific than that. But even if they had been able to give an exact diagnosis I can never see how that who have benefited me, I have to deal with what's happening, not why it's happening.
Over the nearly 4 years my wife's been in care I've seen dozens of people first hand on a daily basis and I've come to the conclusion that the diagnosis isn't important, it's how the disease affects the person that is the important thing and how you can help them live the best they can within their limitations.
K

I couldn't agree more. It's more out of a deep curiosity and I think I would just like the geriatrician to be perhaps a little more upfront about the indecision in the diagnosis. No, it won't make any difference to our situation but sometimes when I read about the horrendous things many TPs face with their PWD I feel a bit of a fraud.

Occasionally too, people assume that with a diagnosis of AD, that his short term memory must be causing all sorts of problems for us but it's not like that at all. Once in a while, someone has given me strange looks if I try to explain that his short term memory is not a huge issue, that either I don't know what I am talking about or that maybe that I am jumping to incorrect conclusions. Even friends who have a relative with AD don't get it and are sometimes surprised by something I might say.

For example he is off to a bridge congress for two days this weekend, going with a friend that I have never met. And that's fine with me. His heart is far more likely to cause a problem than his AD so if there's an issue, they will have to deal with it. He has been away like this before many times and he loves it.

 

[canary]

I would just like the geriatrician to be perhaps a little more upfront about the indecision in the diagnosis.

But what you have been given isnt a "woolly" non- diagnosis. What he has is known by several different names, but it is a very definite "thing". Alzheimers is caused by a particular rogue protein and usually starts in the temporal lobe causing short-term memory loss and proceeds in a generally well recorded fashion, but sometimes this rogue protein starts in the frontal lobes and causes a whole different set of symptoms and short-term memory is retained until much, much later.

Its still Alzheimers, because its caused by the Alzheimers rogue protein causing plaques, but these plaques are not in the same place as the usual veriety

 

[marionq]

But what you have been given isnt a "woolly" non- diagnosis. What he has is known by several different names, but it is a very definite "thing". Alzheimers is caused by a particular rogue protein and usually starts in the temporal lobe causing short-term memory loss and proceeds in a generally well recorded fashion, but sometimes this rogue protein starts in the frontal lobes and causes a whole different set of symptoms and short-term memory is retained until much, much later.

Its still Alzheimers, because its caused by the Alzheimers rogue protein causing plaques, but these plaques are not in the same place as the usual veriety

Very useful description @canary. Once again we are always learning on TP.

 

[Sirena]

My mother was diagnosed with Alzheimers and she more or less fits that picture. However she was never given any of the meds associated with Alzheimers so I am not sure how certain they were of the diagnosis, but as Kevin said it doesn't really matter either to her or to me. We do hear on TP of PWDs being diagnosed with three different types as the disease progresses.

Once in a while, someone has given me strange looks if I try to explain that his short term memory is not a huge issue, that either I don't know what I am talking about or that maybe that I am jumping to incorrect conclusions. Even friends who have a relative with AD don't get it and are sometimes surprised by something I might say.

I think that's possibly because many people don't understand dementia in any terms other than 'dotty and forgetful' - i.e. short term memory problems, and have a fixed idea about someone should behave with Alzheimers (or dementia in general).

 

[jugglingmum]

My mum was given a diagnosis of Alz, and from Canary's many posts I have assumed that it affected the frontal lobe first. With hindsight she had had issues for many years - and I'd say her mid term memory was affected but not her short term memory.

So at the point of diagnosis she was still able to do the cryptic crossword in the Telegraph - something I have never got near, but unable to drive or cook to any level.

I said to many people at the time that her memory was the least of her problems and it was her processing skills. Not living with her and only seeing her from time to time (in the same pattern that had existed since I left uni in 89) I didn't notice everything and I'm sure hostess skills came into play. I think she could easily have been diagnosed 3 years before she was, and had certainly had issues for at least 5 or so years. It's hard to explain but she wasn't capable of day to day life or drive and could no longer live without support but was scoring 27 out of 30 on the tests, but couldn't explain why she had switched her electricity off 18 to 30 months earlier (no heating no light and no hot water - due to her lifelong hoarding she always visited me). There was certainly a sharp personality change 3 years before diagnosis, which had slow changes for another 3 years before that.

5 years post diagnosis her short term memory is shot, but 1 year post diagnosis on being presented with the paper with the dec 2014 plane crash (whilst in hospital with pneumonia) she instantly commented on no the 3rd in 12 months. I suspect if she had lived with a supportive partner she would have been able to live at home far longer.

I often commented to people in the early days that it wasn't the memory loss that was the problem but the processing skills, which I thought at the time was just the misperception of dementia but from reading TP, and canary's posts in particular, I have come to the conclusion that her brain has just been affected in different places from many others. Once we got the diagnosis we were left to it. She presented as a frail confused old lady, the severe confusion was partly caused by the trauma of a few things that led to the chain of events triggering the crisis and did settle once she was in a flat. Yet 3 years before when there were very clear signs she looked very good for a lady of 80, and I've assumed the brain changes of dementia brought on the sudden decline into frailty.

I hope my experience helps.

 

[canary]

It's hard to explain but she wasn't capable of day to day life or drive and could no longer live without support but was scoring 27 out of 30 on the tests, but couldn't explain why she had switched her electricity off 18 to 30 months earlier (no heating no light and no hot water - due to her lifelong hoarding she always visited me). There was certainly a sharp personality change 3 years before diagnosis, which had slow changes for another 3 years before that.

This exactly what OH is like. Well, not the switching off of the electricity, but he is doing illogical things and then not knowing why he has done it. he also has the long term memory loss, rather than short-term memory loss.
Another thing that he does, which is hard to explain, is that he can tell you how to do something (and therefore sounds very capable), but he is entirely unable to take this knowledge and apply it into real life. So he can bizarrely tell you how to do something and yet be completely unable to actually do it.

 

[Lawson58]

My mum was given a diagnosis of Alz, and from Canary's many posts I have assumed that it affected the frontal lobe first. With hindsight she had had issues for many years - and I'd say her mid term memory was affected but not her short term memory.

So at the point of diagnosis she was still able to do the cryptic crossword in the Telegraph - something I have never got near, but unable to drive or cook to any level.

I said to many people at the time that her memory was the least of her problems and it was her processing skills. Not living with her and only seeing her from time to time (in the same pattern that had existed since I left uni in 89) I didn't notice everything and I'm sure hostess skills came into play. I think she could easily have been diagnosed 3 years before she was, and had certainly had issues for at least 5 or so years. It's hard to explain but she wasn't capable of day to day life or drive and could no longer live without support but was scoring 27 out of 30 on the tests, but couldn't explain why she had switched her electricity off 18 to 30 months earlier (no heating no light and no hot water - due to her lifelong hoarding she always visited me). There was certainly a sharp personality change 3 years before diagnosis, which had slow changes for another 3 years before that.

5 years post diagnosis her short term memory is shot, but 1 year post diagnosis on being presented with the paper with the dec 2014 plane crash (whilst in hospital with pneumonia) she instantly commented on no the 3rd in 12 months. I suspect if she had lived with a supportive partner she would have been able to live at home far longer.

I often commented to people in the early days that it wasn't the memory loss that was the problem but the processing skills, which I thought at the time was just the misperception of dementia but from reading TP, and canary's posts in particular, I have come to the conclusion that her brain has just been affected in different places from many others. Once we got the diagnosis we were left to it. She presented as a frail confused old lady, the severe confusion was partly caused by the trauma of a few things that led to the chain of events triggering the crisis and did settle once she was in a flat. Yet 3 years before when there were very clear signs she looked very good for a lady of 80, and I've assumed the brain changes of dementia brought on the sudden decline into frailty.

I hope my experience helps.

What I read about LATE is that it is an acronym for 'limbic-predominant age related TDP43 encephalopathy' and in autopsies they discovered the TDP 43 was misshapen proteins that lodged in different parts of the brain giving rise to the appearance of symptoms that mimic Alzheimer's. It seems that LATE progresses very slowly unless the patient also develops Alzheimer's as well in which case, deterioration occurs very rapidly.

If I remember correctly in LATE patients the tau tangles are there but not the amyloid plaque. I find some of these articles difficult to understand but it did explain why treatments commonly used by people with Alzheimer's sometimes don't work and why trying to find a cure for Alzheimer's is so difficult.

Two years ago, my husband recalled very little of the first twenty-two years of his life but now it is probably more up to 30+ years, whereas his short memory has slipped only a little. I started noticing changes in my husband about eight years ago and he was diagnosed over five years ago with not a lot of change since then, perhaps a little more confusion (things like film plots, subtleties in conversation etc) occasional word seeking, difficulties in understanding instructions etc.

Such an interesting possibility and it could explain a lot.

 

[jugglingmum]

I think there is a lot still to work out with dementia - I read somewhere that they now think there might be 200 different types.

There is clearly a lot of research going on (I toured biochemistry uni depts earlier this year and each one mentioned research into Alz - dau has just started a biochem degree).

In my opinion GPs and even hospital specialists know very little and try to put people into boxes.

In my mum's case the consultant commented that she had scored highly in the tests, the scans show normal brain shrinkage for age so he was diagnosing her based on what we had said about her behaviour.

This is something I really don't understand about @canary 's situation - no diagnosis but presentation in normal life clearly indicates a problem, and they are trying to fit him in one of their boxes and as he doesn't fit no problem. Almost like they are blinkered by what they expect to see, which as science has proved again and again doesn't work in many fields.

 

[canary]

I dont understand it either @jugglingmum . OH was originally given a diagnosis of FTD based on his behaviour, but because he scores very highly on the tests, scans do not show brain shrinkage and he sounds very capable, this diagnosis was revoked. I think the fact that he has an old traumatic brain injury muddies the water too. I know that our GPs surgery consider that it is functional (ie that either he or I are making it up), but I do assure you that Im not and I dont believe that he is either. There are a couple of doctors who believe that it is genuine and are struggling to come up with a diagnosis. In the meantime he is continuing to deteriorate.

 

[mdr107]

I have Posterior Cortical Atrophy, aged 61. It affects the senses first so find it hard to see and listen at the same time. It is very rare, only 5 in Aberdeenshire where I live, I am able to rememberer everything and be cogent so people find it hard to believe I have dementia, but they don’t see me exhausted at home!