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dementia with lewy bodies


Registered User
Jul 31, 2004
Hi This is my first post for nearly two years!

So please can I “bore you” with a bit of catch up just to get myself back into it and set the scene.

Two years ago my husband (now just 53) was diagnosed with Alzheimer’s - although before that he had obviously been having problems. At that time I was teaching full time and I can still remember how some of you very kindly said, “How do you mange?” – well I didn’t so after 6 more weeks I went part time. I won’t bore you with the ins and outs! (With Direct Payments for a carer for my husband).

Anyway after a year and a bit (last November) my husband had a sharp deterioration (not a gradual downhill) – he “recovered” from this but never returned to where he had been. In February this year he had a very very sharp deterioration which resulted in him being taken off to a psychiatric hospital in an ambulance with police and in hand cuffs!

Because of these “episodes” and other behaviours he has now been diagnosed as having Dementia With Lewy Bodies and not Alzheimer’s.

So the story goes on – he recovered reasonably well and I had the house adapted and got carers so as I could work two days per week teaching to get some money and to give me a “break”. However two days before he was due home he had another “episode” and deteriorated again. This time he didn’t “recover” much and exhibited very difficult behaviours. This has resulted in him now being referred to live in a nursing home. I had so longed to have him at home for a lot longer than I have done. In addition, getting all ready for him to come home and then it all being cancelled was very very very upsetting.

He is still in the psychiatric hospital over five months later although he has been able to have some daytime visits home. We are waiting for the nursing home referral to be sorted.

So I have had to adapt to the whole timescale thing not being what I had thought it would be. The way he has changed in such a short time has shocked everyone who knows him.

So please what I really want to know is does anyone out there have experience of Dementia With Lewy Bodies? Does anyone have experience of it in a person as young as my husband? – I have been told that it is very unusual for someone as young as 53 to have DWLB. I would find it very helpful if I could find someone else to “compare notes” with as I don’t know anyone in the same situation. I am in touch with a good support group but no one else there has the same diagnosis.

Can anyone help?




Registered User
Mar 7, 2004
Hi egg.......sorry no experience of your particular type of dementia. Just wanted to say "welcome back" and I am sure someone here will be able to help soon.

So sorry to read of your problems, so quick....you must still be inshock. Look after yourself.