Do you know anything about LEWY BODY Dementia?

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My mum has a new diagnosis. It is not Alzheimers, it is Lewy Body dementia, which is far worse. In short it is like Alzheimers with added Parkinson, and Psychosis, and the progression of the illness is really fast.

Do you have any experience with this illness?

This night she did not sleep a wink. She was up all night,trying to get into the rooms of the other patients. She was aggressive, shouting and swearing, and attacked the nurse. Repeatedly.
My mum is (or was) a really sweet little old lady. Mild mannered, loving and gentle.
I had her sectioned a few weeks ago, and this morning they have decided to up her care. She will be "sheltered" and have her own nurse responsible for her in the night. They dont want to sedate her until they have had proper time evaluating her and made sure she has the correct diagnosis.

I'm very sorry for what your mother is going through.

My friend's mum was recently diagnosed with Lewy Body dementia so I know a little bit about it. Her symptoms seemed particularly severe around the time she was diagnosed and in the weeks immediately afterwards. I think some of the medication she was given actually made things worse. However, after a few months the doctors seem to have found a balance of medication that works well and her symptoms are very much improved.

Does your friends mum live at home, in a nursing home, or in a psychiatric unit, do you know?

She lives at home with her dh.

This must be devastating for you. My friend found the time around diagnosis very difficult. A year on and she is much more positive.

My grandmother had it. My aunt coped for years caring for her in the early stages and when it was medicated but eventually she had to go into a nursing home, who couldn't cope, and she was moved to a specialist nursing home. Once the medication stopped working she declined very fast :(

I'm so sorry to hear your mother has this diagnosis. It's a devastating disease.

don't know anything about this but it sounds terrible for your mum and family.hope things get better for you all.

Very very sorry to hear about your Mum.
I care for people with various types of dementia, including LBD.
Some quick thoughts:
If your Mum has to pay for her care at present it would definately be worth asking the local mental health team for a 'continuing health care assessment', this is where the NHS takes over full responsibility for paying for the care. LBD can indeeed be more complex than other Dementia's with a faster and more unpredictable progression and it may be that at some point she will need very specialist care- easier to access with CHC funding.
Definately better to avoid medication (particularly antipsychotics which can be very dangerous if given to LBD patients). The staff sound like they are definately on the right tracks in giving one to one at the worst times of the day/night and also in holding off on the medication until
l they are sure of the diagnosis.
In my experience clients with LBD can vary a lot even from hour to hour, this can means it is difficult to plan care but also it means that there may well be times that you will be able to see more of the 'old' Mum, make the most of interacting at those times.
Sorry a quick post, sorry again to hear of what your Mum and you as family are going through.

allmyfavouritethings, she is in a unit equivalent to the nhs, so paid for by the state. She will stay there until they have found space for her in a nursing home with a "sheltered unit", which they think will suit her needs. At the moment they have gone back to Exelon plasters (as the tablets would interfere with her cancer meds), and they are also giving her something to sleep on. Otherwise she would be days without sleep. Yesterday was the first time which she had slept the entire night since she had her dramatic down turn 3 weeks ago. And it was possible to actually communicate with her. She was "with us".

It all happened so suddenly that I have some difficulty coming to terms with it. Until the beginning of January, she "just" had alzheimers, it was like somebody switched a button and turned on the psychosis.

snap, it must have been so hard for your aunt.