Hello - new member needing Advice on LBD


New member
Aug 4, 2019
My other half has recently been diagnosed with Lewy Body Dementia. Anyone had the experience of caring for someone with this form of dementia?


Registered User
Jul 23, 2017
N Ireland
Hello @bpop, you are welcome here and I hope you find the forum to be a friendly and supportive place.

I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there



You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done. A specific Factsheet about LBD can be read by clicking the 2nd line of the following link
What is dementia with Lewy bodies (DLB)? (403)
PDF printable version

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.


New member
Aug 4, 2019
Thank you for your rely and the web links - will explore these now.
Thanks again


New member
Aug 4, 2019
My OH isn't showing the sleep disturbance (as yet). In fact is generally asleep as head hits the pillow, and will nod off in the day. Was a query regarding something that possibly could have been an hallucination but other than that … so not sure OH is having hallucinations. Possibly the odd one?

Walking has slowed down quite a bit over the last year and is more stooped when moving around. Memory issues have become more pronounced - although some days worse than others. Tonight was trying to put pyjama top on legs. Can get muddled trying to make a cup of tea. Unsure of where to set out cutlery and sometimes will try to cut food with a spoon. Many little things like this are becoming more frequent. Voice can be very weak at times - sometimes a whisper.

I just wonder if this is just early stages. Sometimes I think it's progressing quickly then other days its not so bad.

The unknown - how bad will it get? How will I cope?

Grannie G

Volunteer Moderator
Apr 3, 2006
The unknown - how bad will it get? How will I cope?
It is scary when the illness seems to be progressing quickly. It`s sad to say all you can do is get as much help as you can and try to take it day by day.

Some days will be good and others not so good.

How will I cope?
One of my friends at a support group said we grow with it. It`s what I found. If we look too far ahead we will only be imagining what may never be.

Get support from any available source and Dementia Talking Point will be here for you with the best virtual support possible.


Registered User
Jan 13, 2019
It was the “seeing people” that helped identify The Banjoman’s LBD. Once I picked up on that (I didn’t live with him) and searched on line, it gave me something other than his forgetfulness to mention to his GP. Before that they were looking for physical reasons for his weight loss and other health problems. Once a dementia cause was identified it helped explain some of his problems i.e. he wasn’t eating properly despite being convinced himself that he was (although it was obvious to me that he wasn’t).
By the time SS finally agreed to his need for residential care he was believing The Great British Bake Off team, complete with huge lorry, were there in the lounge of his flat.
He doesn’t seem to have followed a regular down turn but has experienced some features from quite early on that would be expected later in the progression of the disease but avoided others.