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Lewy Body Dementia - Page 2 - Carers UK Forum

Lewy Body Dementia

For issues specific to caring for someone with dementia.
is it difficult getting a diagnosis or Lewy Body as I often think my husband (who I care for )has it as he has many of the symptoms but as he has other medical problems it's difficult to know if his symptoms are therefore due to all the meds he takes although he has been diagnosed with early onset dementia, we dont often see his GP as although they are very nice we have been told there is nothing to be done for his other problems hence we just get on with life, does it make a difference having a specific diagnosis?
thanks and best wishes - Rae
hello rae
I think if there is a combination of symptoms i.e night terrors and hallucinations this leads them to believe it is Lewy Body, however i don't think that they can know for sure until after the person dies, that's the impression that i have been given. The only difference having a diagnoses is they can give medicine that can slow down the progression. I hope this helps.

Thank you dancedintherain its very much appreciated.
Thanks, I assumed that they could now test for it I knew some years ago about the postmortem side of it his night terrors are less now (but they are bad if we have to stay away though) hallucinations most days a number of times especially if he has to be woken rather than waking up on his own. No dancing in the rain for you here the sky has just turned a lovely blu Image
I am back in London now. Ellie, I think that your husband's reluctance to accept the situation is probably a personal thing related to his character rather than to the illness. My husband was resigned to the fact that he was losing his faculties, and though he was unhappy about it (naturally), he didn't fight me on anything.
He had fairly minor side-effects as the dosage of Rivastigmine was gradually increased in the first couple of months after it was prescribed, mainly slight nausea and dizziness, but they were not severe. He has been on the maximum dosage of 12 mg a day since January 2012, I think. We are thinking of discussing patches rather than capsules with the consultant, since he can sometimes be very reluctant to take a pill in the morning, which is always his worst time, when he is at his most confused and most contrary.
I think the suite of symptoms for LBD is fairly characteristic in most cases: the memory loss and confusion, the typical hallucinations, and the physical, Parkinsonian symptoms, like the shuffling walk and tremor, and eventually, slurred speech. But while my husband was being assessed and diagnosed, in 2011, he had a brain scan, which I thought was decisive, as the Lewy Bodies, protein masses in the brain, are supposed to be visible in a scan. However, I am not a medic, so I may have misunderstood this. I only know that we were told that the brain-scan visually 'confirmed' their opinion that his condition was Lewy Body Dementia, so there must be something recognisable to see in the brain while the patient is still living.
I don't know if the difficulty with understanding time is particularly characteristic of LBD, or of all dementias, but it is certainly a very typical feature in my husband's case. I found it was no help at all to have written reminders around about what day/date it was, because what is lost is the concept of past, present and future. For example, he would look at the Radio Times and say, 'I'd like to see this', a programme that ran from 7 to 7.30 pm. I would say, 'It has finished; it's 8 pm now'. And he could read the clock, and see it was eight, but still could not understand why he couldn't see a programme that was over 30 minutes ago.
I think that a lot is still being learnt about all these conditions. My husband has deteriorated markedly over the last 6 months or so, but the medication certainly gave him a little extra time. His speech is sometimes hard to understand now, not only because he has such trouble finding words, but because his articulation is very unclear. His hearing is also poor, but it is difficult to judge how much may be slight deafness, and how much is a matter of comprehension.
Answering a point raised by Rae: I think having a specific diagnosis helps in that those of us who live with these conditions, as patients or as carers, can add to the sum of knowledge about them, and we need to know, as far as possible, which condition is in question. Though there is certainly a lot of overlap, especially in the Parkinson's Dementia /Lewy Body Dementia area.

Hi Tristesa
Thanks for reply that is very interesting about the brain scan i will certainly talk to our GP about that. My husband has the same problem with time and days but as you say this could be a common symptom of all dementia's. I think you are probably right about his character and that's why he is fighting me on everything because he doesn't accept his illness. He will often ask how long it will be before he gets better. Its hard.
Hi Rae
You have probably read tristesa reply to me about having a brain scan that she thinks can say if it is Lewy Body. I will be talking to our GP about it so perhaps this is something you could ask your GP about, then at least you would know for sure. Keep well.
Ellie, here is a short article about brain-scans as used in the diagnosis of LBD and other dementias.
http://www.lbda.org/feature/5203/brain- ... mentia.htm

It is a bit inconclusive, but it looks as though the techniques are being refined and developed all the time. Although it appears that other methods still provide the diagnostic basis, brain-imaging can obviously be a useful additional factor. Possibly post-mortem examination remains the only hundred-percent certain method of identifying the exact type of dementia, but the scans seem to be making progress.

I think that the next few years will see a fair amount of progress in the diagnosis and treatment of dementia. Sadly, it will come too late for those who are already afflicted, but their cases, and the feedback from carers like ourselves, will be the route that will lead to improvement. We have to bear in mind that we, as carers, are in many ways the most knowledgeable people about the diseases. We knew the patient when he/she was healthy; we understand their personalities; we see how each phase affects them. The medics should learn from us, just as we try to learn from them.

thank you Tristesa i will certainly read this