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Lewy Body Dementia - Carers UK Forum

Lewy Body Dementia

For issues specific to caring for someone with dementia.
I wondered if anybody here has first-hand experience of dealing with this condition? Obviously I have read a lot about it since my husband was diagnosed about two years ago, but I would find it helpful to see comments from anybody who has cared for a sufferer.
I find my husband's condition to be extremely variable, both the mental and physical manifestations. There are times when he is pretty lucid, and others when he is totally confused (often when he is still caught up in a dream/hallucination he has been having while asleep). Physically, there are times when he toddles about quite happily, and others when he has great difficult getting up out of a chair. It is easy for those who see him only on occasion to get a false impression, to think he is better, or worse, than he is on average.
Reading other, more general, comments on caring for dementia sufferers, I see that many of you feel that the best way to deal with some of the fantasies that dementia patients come up with is to go along with them to some degree, not to argue or try to point out the actual situation. I find this extremely difficult to do, probably partly because of a very literal mind and of deep-seated training always to speak the truth.

Hello Tristessa,

Do have a read of this thread viewtopic.php?f=32&t=12052 (just click on the link) I'm sure you will find it very interesting reading.

It is called 'Normms Blogg' and is the first topic in the Dementia section. Normms McNamara himself has Lewy Bodies dementia and his blogg is written from 'first hand' experience of his own journey with this disease. At times it makes hard reading but it does give us Carer's an insight as to how he feels and sees the world.
Thank you very much for your reply, Susieq. Yes, there is a lot of interesting material in that thread, though I haven't been through all of it yet. However, it does appear to be about Alzheimer's Disease, rather than Dementia with Lewy Bodies, which has some significant differences, including its marked variability and also the physical symptoms that bear a lot of resemblance to Parkinson's Disease. LBD is rather less common than Alzheimer's (published figures vary between 10% and 25%, but in any case, a minority of cases, third after Alzheimer's and Vascular Dementia), so it is not quite so easy to find practical information. Obviously I have looked up the usual sources of information online, and since my husband was diagnosed, I have also been bombarded with written material by health professionals. Much of this is comparatively superficial and repetitive.
So if there is anyone here who cares/has cared for a person with Lewy Body Dementia, I would really like to hear about their experiences.

Normms was first diagnosed with early onset Alzheimer's 5 or 6 years ago, but as you will see if you persevere and read on that diagnosis was changed to Lewy Bodies Dementia (I think about 2 years ago).

In his writings Normms describes very well the emotions and terrors that he experiences, and this helps us to understand what it is like from his perspective. I cared for my Mother (who had Alzheimers) and there were times when I wished she could have told me what she felt and experienced so that I could have better responded to her confusion.
Ah, my fault, Susieq -- as I said, I hadn't read through the whole thread. I will go back to it and continue reading. My husband is a really classic LBD case, so much so that I had guessed the diagnosis from internet research even before the medics told me, but I know there are many cases in which the diagnosis can be revised as the disease progresses.
At the moment, I feel I can deal better with my husband's problems than I can with the impatient and contemptuous attitude of certain members of his family. But that's another story. Thank you for getting back to me and explaining. Image

I have just joined the site and my husband has just been diagnosed with lewy body dementia if you are still on the site i would really appreciate talking with you. I see from reading your comments that you were going through the same things that i am now going through. Its really difficult and as you say LBD is not so well known as the other types of dementia.
Ellie, I am still here, at least from time to time. My husband moved into a care home in November, so he has now been there for a little over 3 months. His condition is deteriorating slowly, but the characteristic variability is still present: some days he seems fairly cheerful and content, is able to walk well, and mostly makes sense when he talks. Other days, he can be totally confused, and physically very shaky. He falls quite often, though never seems to hurt himself much. The staff at the home are able to cope with this far better than I could alone. The relatively clear distinction between reality and the world of his hallucinations is becoming more blurred, so that he will switch from one to the other in a single conversation.

I now realise that the first symptoms of his illness appeared long before either of us really noticed, around 2008. I first saw that there was a real problem in the autumn/winter of 2010-2011, but as I was in the middle of dealing with the aftermath of my mother's death at the time, I was not as 'proactive' (hateful word) as I might otherwise have been about getting him to a doctor. By the spring of 2011, it was clear that he was developing some form of dementia, but the process of assessment and diagnosis unfolded on the usual stately NHS timetable: he was not formally diagnosed till October 2011. During the summer/autumn of 2011, the progress of the disease was horrifyingly rapid. The drug prescribed (Rivastigmine) had a pretty magical effect at first, once he had progressed to the full dosage of 12 mg a day: throughout most of 2012 he was markedly better than he had been in the summer of 2011, so we had a real respite from the progress of the disease. I could still cope with him at home till last summer (2013), when he started to deteriorate fairly sharply.

I think all cases vary quite a bit, but I would be happy to share my experiences with you. Is your husband on medication, yet?

Ellie -- I am going to be away from regular internet access for the next few days, so don't worry if you post a reply and I don't respond immediately. I shall be back, glued to the computer, from February 14. Image

Hi Tristesa
Thanks for replying, sorry to hear that your husband has had to go into care. That is my husbands biggest fear, i don't know if it was the same for you but for all the memory problems, hallucinations and night terrors he still knows what he wants and fights me on everything. He still insists he can do things and will do them and then mess it up i really struggle with this because i feel awful that i am the one that has to tell him he can't do these things anymore. He will say he doesn't want to feel totally useless but he feels worse when it all goes wrong.
He had to give up work in 2006 due to stress and then he started with the night terrors. Eventually he was given clonazipan at night which has helped with these, although he still does get them at least once a week. We moved house in 2010 and then i started to notice his short term memory was not very good. He would be constantly asking me what day it was and couldn't remember simple things. He was diagnosed in 2012 with Lewy Body and was started on rivastigmine patches but couldn't cope with the side effects he is now on Domeprazil, which he is on the maximum dosage, and they say there isn't anything else they can do.
Ellis, Tristesa will be back to chat with you, I am sure.

meanwhile, just saying hello again.

My only "advice" at this stage is to not look too far ahead, take each day as it comes? easier said than done of course.Not very useful but I did nt want you to feel nobody else is interested.