My husband finally got his diagnosis a year ago last April after 2 years of to-ing and fro-ing . He was diagnosed with Lewy Body Dementia after a full case review showed he filled every single tick box of the criteria and symptoms of Lewy Body . The consultant psychiatrist just wanted to back this up with a scan with dyes . After this scan he said that it didn’t take up the receptors where expected which would indicate that there was NO Lewy Body present ALTHOUGH. He was displaying all the symptoms so it would be reviewed in a year . However during that year my husband deteriorated quite a lot and his consultant psychiatrist applied for a FDG Pet scan , whilst we were waiting we were referred to a Neurologist to test for Epilelsy ?!!!! He ordered an EEG and an ECG . The ECG showed up that his heart kept stopping and then starting seconds later (thank god the random tests were ordered ) He was fitted with a pacemaker in January , and the EEG showed that his brain had slowed down considerably indicating that the dementia was well established. He duly had his FDG PET scan several months later this April and this showed that there was a problem with bilateral frontal lobes in particular lateral prefrontal cortex + primary visual cortex on the left side ...it says whilst it is an abnormal scan it does NOT. Lewy Body . They adviced that he had a further neurological review with yet another Neurologist . Today however we had a follow up with the original consultant who wanted to know how things were going , he said you’ve got your diagnosis on Lewy Body , I interrupted to say we have had but have since been told it hasn’t shown up on any of the tests to which he replied there are NO DEFINITIVE TESTS FOR LEWY BODY WE GO ON THE SYMPTOMS IF THEY ARE ALL PRESENT WHICH THEY APPEAR TO BE THEN THATS WHAT WE ARE LOOKING AT He also said the evidence from the 24hour EEG also backs up the dementia . . Came home and my husband is distraught , anxious and so confused he thinks people are lying to him .... I am the one who tries to put his life right for him but for once I just don’t know how ? Has anybody any advice ? How did others get diagnosis ? Has anyone had changes in diagnosis criss crossing ? Who do we believe ? I don’t even know whether to put this appointment with another consultant Neurologist on hold in case he starts saying something completely different ? I don’t want my husband to be made even more anxious and distraught ? HELP !
How to confuse the confused !
- Thread starter Joolie58
- Start date
Im sorry @Joolie58 I hear your anger and confusion.
I can only say that my OH was diagnosed with FTD (and he ticked every box too), but then the scan didnt show anything, so we have been told that there is no neurodegenerative disease either. My OH is deteriorating too, but no-one believes me. I share your pain.
I can only say that my OH was diagnosed with FTD (and he ticked every box too), but then the scan didnt show anything, so we have been told that there is no neurodegenerative disease either. My OH is deteriorating too, but no-one believes me. I share your pain.
This must be so confusing and upsetting for you both.
I know that other members have said their loved one was diagnosed with one type of dementia, and then subsequently with a different type. I don't have a lot of faith in the diagnostic techniques. Sometimes scans show a lot of damage yet the person is relatively unaffected, and sometimes the opposite - very little damage yet clear symptoms.
My mother was told by the memory clinic she did have dementia, then a couple of months later told by a different medic at the clinic that she didn't; then a year later tests confirmed (and it became very evident) that she did. The diagnosis was Alzheimers but she has never been given medication for it as they decided she wasn't suitable. So really, it doesn't matter. You often just have to rely on symptoms alone.
I know that other members have said their loved one was diagnosed with one type of dementia, and then subsequently with a different type. I don't have a lot of faith in the diagnostic techniques. Sometimes scans show a lot of damage yet the person is relatively unaffected, and sometimes the opposite - very little damage yet clear symptoms.
My mother was told by the memory clinic she did have dementia, then a couple of months later told by a different medic at the clinic that she didn't; then a year later tests confirmed (and it became very evident) that she did. The diagnosis was Alzheimers but she has never been given medication for it as they decided she wasn't suitable. So really, it doesn't matter. You often just have to rely on symptoms alone.
That’s a really awful feeling and place to be when the symptoms your OH is having are put into Question it leaves you both feeling unsupported doesn’t it , I know for a good year before his symptoms became very obvious my husband who was then only about 52/53 kept saying something is not right with my head it feels fuzzy nothing is sharp anymore . ... of course this was dismissed as being a bit too vague by medical staff and friends and family suggested he. take more water with it !!! (A bit ironic as he doesn’t drink alcohol ) . Keep your chin up and be persistent x
Hi , personally I would be quite happy relying on the symptoms they are there for all to see and monitor something so tangible about this illness which in many other ways is a mystery or an unknown entity. Digging for scientific facts and figures on a piece of paper offers no constructive help . I hope your Mother has many good days left to come when you can reach out to each other in some shared love .
I have read that the diagnostic process is not definitive until post mortem.
My wife was first diagnosed with Alzheimer's as her symptoms fit that pretty well. However, my wife also ticks other boxes, from other dementias, and her scans showed significant vascular damage and frontal lobe pathology so the diagnosis became dementia of uncertain aetiology. The Consultant made it clear that the diagnosis was based on the total of evidence from testing, interviews, reports of symptoms and findings on scans, rather than scans alone.
A comment has been made about some people's symptoms not having a direct relationship to the amount of brain damage. This was observed in the ongoing 'Nuns study' and a search for that provides interesting reading. One of the current theories about that circumstance is in the realm of what is know as 'cognitive reserve'. Early and mid life activity (education, lifestyle etc) can build a cognitive reserve which can withstand a lot of brain damage, whereas those with little reserve are less able to withstand damage. Of course, that's only one factor, amongst many.
I don't have a problem with accepting the diagnosis from my wife's Consultant Psychiatrist and my wife is beyond understanding any of it so isn't disturbed by that aspect of things. I hope that at some point you and your husband will be able to get a settled situation.
My wife was first diagnosed with Alzheimer's as her symptoms fit that pretty well. However, my wife also ticks other boxes, from other dementias, and her scans showed significant vascular damage and frontal lobe pathology so the diagnosis became dementia of uncertain aetiology. The Consultant made it clear that the diagnosis was based on the total of evidence from testing, interviews, reports of symptoms and findings on scans, rather than scans alone.
A comment has been made about some people's symptoms not having a direct relationship to the amount of brain damage. This was observed in the ongoing 'Nuns study' and a search for that provides interesting reading. One of the current theories about that circumstance is in the realm of what is know as 'cognitive reserve'. Early and mid life activity (education, lifestyle etc) can build a cognitive reserve which can withstand a lot of brain damage, whereas those with little reserve are less able to withstand damage. Of course, that's only one factor, amongst many.
I don't have a problem with accepting the diagnosis from my wife's Consultant Psychiatrist and my wife is beyond understanding any of it so isn't disturbed by that aspect of things. I hope that at some point you and your husband will be able to get a settled situation.
Thanks for replying ... I am quite happy just to say m husband has ‘Dementia ‘ and concentrate on trying to make the most of the time we have left together . But my husband is fixated on the actual diagnosis , even though he doesn’t understand half of what is said . He will still aske questions, and I won’t lie to him , not on the major things in life . So on we seem to have to go
You will probably find (perhaps quite soon) that you will have to be "economical with the truth" or otherwise he will become distressed. Once someone is unable to understand the truth you have to come up with some other answer to their questions. I used to do this all the time with mum and I am now finding that I am starting to do the same with OH.
I just told the Banjoman that his brain isn’t working quite right and use the phrase Lewy Body Disease rather than LB Dementia.
I agree, Canary. My mother is now beyond understanding anything much at all so it doesn't matter what you say as long as it sounds cheerful. But if I'd tried to tell her the truth about moving to a care home last year she would have been very distressed (mainly about leaving her cat) so it was much kinder to tell her she was going on a weekend break.
Mixed dementia is a common diagnosis in itself.
In the end it matters little as with dementia the brain damage is progressive and becomes so widespread in the end stages that there is little or no practical difference between many of the diseases.
Like you, I don't lie. Whether we tell the truth or use 'love lies' or diversion we do, indeed, just have to go on and on.
My wife is a highly educated person who also likes to know exactly what is happening with her and what stage she is at. I have sat her down and patiently gone through the Society Factsheets on Alzheimer's, Vascular and FT Dementia, as well as the stages, so she could see where she fits. I have patiently explained the diagnosis process. This is repeated time and time again as she neither comprehends nor remembers what I say. I do this in the full knowledge that it will only placate her in the moment. It's exasperating - but then I find everything about dementia exasperating.
I'm just waiting for the day when my wife will stop asking. However, my anguish will just be directed elsewhere at that point as the cessation of the questioning will herald a progression of the disease that will bring some new problem. No matter what way you look at it in can seem grim. I just take it as it comes and try to enjoy things as much as possible.
Maybe a side issue, but of interest possibly is that when people (public, not professional) asked what was wrong with my OH, I would reply brain damage following a fall. This was absolutely accurate but avoided the issue of dementia; I got far more sympathy and dignified responses to this. Why??? Kindred.
That's interesting isn't it. Possibly dementia seems more frightening because it's progressive, and because it can happen to anyone including the person who's speaking to you. There wouldn't be the same fear of an accidental brain injury. When someone asks how my mother is, I've learned that what they really mean is "please don't tell me".
Thank you to everyone for the replies , it is of some comfort ( but far from right ) that myOH and myself are not alone in all the confusion and complexities of the World of Dementia . The last couple of comments are really sad but all too true I find . The number of ‘friends’ who no longer know what to say , so avoid us , or just talk to me and ignore my OH at my side . But had I told them he had some kind of physical illness the offers of help would have been numerous .
My husband was diagnosed with Alzheimer's in 2013 & then discharged with no follow up. He was given Donepezil which had horrendous side effects. I always doubted the diagnosis as I've been close to others with Alzheimer's and my OH didn't fit the pattern at all but we were told he was 'atypical'.
Fast forward to 2018 when he had a lumbar puncture as part of a drugs trial which showed he didn't have Alzheimer's at all. The research team referred us to an expert in FTD who concluded he did in fact have FTD - the non-Fluent primary aphasia variant. He was immediately taken off Donepezil & the change was dramatic - for 5 years we (& I mean we) had put up with these horrendous side effects for nothing. In fact the drug was over stimulating his brain. When I read up on FTD I realised that my husband perfectly fitted the criteria - for a start he was young & had speech problems but the initial consultant just ticked the Alzheimers box & no one listened to me.
I'm not sure what the moral of this story is but in our case a wrong diagnosis did make a huge difference. I don't know why it happened - lack of time, lack of knowledge or just a lack of care who knows? Believe me I share your anger & frustration. We had 5 years when life could have been so much better without the Donepezil. Sadly the dementia has moved on and makes life so much harder now so I really do resent that those early dementia years when life could have been good were so damaged. All I can say is if you feel a diagnosis would help don't give up on getting the right one
Fast forward to 2018 when he had a lumbar puncture as part of a drugs trial which showed he didn't have Alzheimer's at all. The research team referred us to an expert in FTD who concluded he did in fact have FTD - the non-Fluent primary aphasia variant. He was immediately taken off Donepezil & the change was dramatic - for 5 years we (& I mean we) had put up with these horrendous side effects for nothing. In fact the drug was over stimulating his brain. When I read up on FTD I realised that my husband perfectly fitted the criteria - for a start he was young & had speech problems but the initial consultant just ticked the Alzheimers box & no one listened to me.
I'm not sure what the moral of this story is but in our case a wrong diagnosis did make a huge difference. I don't know why it happened - lack of time, lack of knowledge or just a lack of care who knows? Believe me I share your anger & frustration. We had 5 years when life could have been so much better without the Donepezil. Sadly the dementia has moved on and makes life so much harder now so I really do resent that those early dementia years when life could have been good were so damaged. All I can say is if you feel a diagnosis would help don't give up on getting the right one
Goodness @Littlebear, that's a terrible tale.
Serious side effects are common with Alzheimer's meds and many people have to be taken off them after a few weeks. That sounds like what was missing was a meds review. I'm glad it was sorted in the end as neither of you should have had to endure that.
Serious side effects are common with Alzheimer's meds and many people have to be taken off them after a few weeks. That sounds like what was missing was a meds review. I'm glad it was sorted in the end as neither of you should have had to endure that.
