Lewy body dementia

[Anne-marie 70]

My mother has recently be diagnosed with Lewy body dementia, has anyone on this forum had experience with any one with this as this is all new to our family and very daunting for us...

 

[karaokePete]

Hello @Anne-marie 70 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

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

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. There is also a Dementia Guide in the list.

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

 

[Shedrech]

hello @Anne-marie 70
a warm welcome to DTP
it is daunting to face a new diagnosis and you've come to the best place for support and information to help you and your mother
there certainly are members who have knowledge of LBD, and threads on the various forums ... so maybe have a read around here and on the main AS site
and post here with anything that's on your mind, folk will offer useful suggestions and sympathy

 

[bpop]

hello @Anne-marie 70
a warm welcome to DTP
it is daunting to face a new diagnosis and you've come to the best place for support and information to help you and your mother
there certainly are members who have knowledge of LBD, and threads on the various forums ... so maybe have a read around here and on the main AS site
and post here with anything that's on your mind, folk will offer useful suggestions and sympathy

My OH was diagnose with LBD some months ago. He doesn't act out dreams - in fact he sleeps like a log - will even nod off in the day/ evening. Not sure if he's having hallucinations - had the odd moment of seeing something like a rain shower but nothing else as far as I'm aware. Some days he's a bit more motivated/chatty, particularly if he's been involved in some social group but gets weary towards the evening if been interacting. Often very little to say to me and will sit there waiting for me to prompt or encourage him to do something. Trouble is he's always been laid back and in no rush to do anything which has been difficult to deal with over the years - and now there's meant to be apathy caused by the dementia which results in less motivation. My problem is understanding if he's just being his ' laid back self' or is it the apathy? Perhaps a bit of both. Its early days and I am still learning. Its a lonely time for me - not sure if he feels the same.