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Lewy Body Dementia

(9 Posts)
flowerofthewestx2 Sun 28-Mar-21 12:56:50

Has anyone here experienced caring for a LO who has been diagnosed with LBD?
I recently lost my darling husband to this dreadful disease which is often unknown to GPS.

NonnaW Sun 28-Mar-21 13:00:34

No experience of caring, but my lovely sister in law had this horrible condition alongside Parkinsons.

ElaineI Sun 28-Mar-21 22:39:36

It is a well known type of dementia usually associated with Parkinsons. I would expect that all GPs know about it.
I'm sorry for your loss and sounds like you have had a difficult time caring for your DH. My DD's FiL has this and is slowly getting worse. He has a lot of falls and is on medication but the dementia is frightening for his wife as he hallucinates and does dangerous things. He also has lucid moments though. She is supported by Parkinsons nurses and Vocal and as well as DD and DSiL.

Doodledog Sun 28-Mar-21 23:07:32

My stepfather died of Lewy Body, and it is a very cruel and relentless condition. Please accept my condolences - it must have been very difficult for you.

Esspee Sun 28-Mar-21 23:22:38

My aunt had LBD, I thought it was widely known about.
I don’t carry the Alzheimer gene so virtually no chance of me getting that. LBD is entirely different and I have asked my OH to let me know if he sees any sign of me going down that path as I want it diagnosed as soon as possible so that I can choose not to go there.

kittylester Mon 29-Mar-21 07:01:52

The Alzheimer's Society know about Lewy Body disease and are brilliant at supporting people living with any type dementia and the people caring for them.

flowerofthewestx2 Mon 29-Mar-21 16:06:07

It is a common dementia but sadly not all medical professionals are aware of it unless associated with PD.
If usual dementia medications are given to people living with LBD it can have a detrimental affect on them.
I had to insist on someone who was familiar with this horribl disease. Its known as rollarcoaster dementia for good reason.

BlueBelle Mon 29-Mar-21 16:56:45

If anyone is concerned about a loved one and this problem ask your gp to refer you to a mental health specialist for diagnosis
Gps don’t have expertise in all forms of health

Gossamerbeynon1945 Mon 29-Mar-21 17:20:39

If you contact the Alzheimers Society, they have a very good leaflet on Lewy Body dementia. I used to volunteer at the local hospital, and part of my job was to organise the information leaflets. I learned that there are over 100 types of dementia