Lewy Body Dementia

Has anyone else what? Got a diagnosis of it? Know somebody has it? Need a bit more info to answer your question, please.

I would suggest asking on the Alzheimer’s Society Talking Point forum - there are bound to be people there with experience of it.
I used the forum for several years - it was a lifeline for me - and despite the name (that is if it hasn’t been changed) different forms of dementia were often discussed, not just Alzheimer’s.

My mum had it, it was awful. How can I help?

Sorry. I meant anyone else have experience of this cruelest of Dementias.
Its unlike other forms of Dementia. Meds for other forms often don't work or make symptoms worse.

DH, Parkinson’s diagnosed in 2013, has this distressing and ever worsening condition. There doesn’t seem to be a lot which will help, sadly.

Please contact the Alzheimer's Society if you haven't already. Despite it's name, the Society helps people living with all kinds of dementia, and their carers.

Most areas in the country run Carer's courses for those looking after people living with this horrible disease. Do try to access one. I help to run them in our area and the people who come along say that they learn so much about coping, where to go for help, the different benefits available and about looking after themselves. Please message me if I can help.

Talking point on the Alzheimer's Society website is a brilliant suggestion Witzend.

It is an awful disease and, coincidentally, my DH's brother has been diagnosed with it.

My mother had this many years ago and died in 2004. She was on a new treatment which helped, but as it was new and experimental they were required to take her off it after a few months - she then deteriorated markedly and they could not put her back on it. It was remenyl (galantamine) which I think is now a standard treatment for dementias. And it did work for my Mum.

LBD is particularly difficult as it combines a lot of the problems of Parkinsons on top of the mental deterioration of Alzheimers. Hallucinations are common. My Mum used to get upset because she thought we were sitting on a baby when we sat on the sofa. Most of the hallucinations were benign in that they were not frightening to her.

My OH had PD and finished up with severe paranoia and hallucinations, so he may in fact have had LBD.

I am sorry if a member of your family is suffering with this.

My husband started symptoms last year and the consultant thought the most likely diagnoses was LBD.
He had had a CAT scan but then a DAT scan which showed it wasn’t LBD. I researched LBD so was quite relieved that he was diagnosed with vascular dementia - we’re still doing ok but of course the future is an unknown land.
Although my husband has had a couple of hallucinations fortunately they have not been frequent- which I believe is more likely in LBD. I find hallucinations- especially in the night - quite difficult to deal with. Good luck to anyone involved xx

Yes I have experience with this dementia, it’s absolutely horrendous. What is it that you need? I do feel for you and would want to help.

Sadly I lost my husband in nov 2020.
Just to talk about the hateful disease and maybe help to support other carers