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 How to care for a Lewy Body patient at home. 
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Joined: Tue Jun 26, 2007 11:15 am
Posts: 3
Location: milwaukee, WI
Post How to care for a Lewy Body patient at home.
Recently my grandfather was diagnosed with Lewy Body and he seems to be progressing in his symptoms rather quickly. He lives alone but usually has family members around and fix his meals for him. He also has a home health aide come in during the week for bathing and hygiene. He was taking carbidopa-levidopa because he was first diagnosed with Parkinsons but his doctor is now changing his meds. I guess my question is how realistic is it to think that we can keep him at home and if so what is the best way to go about it. His wife, my grandmother just passed away last year and we were able to keep her at home the whole time she was sick. We would like the same for my grandfather but sometimes it is very frustrating and stressful. If anyone has any ideas or advice please let me know. Anything would be appreciated.

Tue Jun 26, 2007 11:26 am

Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA

Every patient is different, but with comprehensive treatment, some don't just stabilize where they're at today, they improve.

I think with optimized treatment, it's pretty likely that your situation is sustainable for quite some time.

One of the big factors in caring for an LO at their home is the built environment - if halls are wide enough, bathrooms are big enough, etc, it can work pretty well. Homes where everything one needs is on a single floor are, obviously, the best bet in this, but other solutions can work.

One thing I would be sure to formalize before getting too much further in this is the issue of respite care. In almost all families, someone ends up being the primary caregiver, and that person needs to be able to chuck it periodically and have other people pick up the slack.

Finally, something important to consider is socialization and physical activity for your LO. Home is great, but one thing most home environments can't provide is constant activity and stimulation. I would HIGHLY suggest checking into adult day programs, senior centers, and other resources that would help your grandfather stay as active and engaged as possible, which is shown to help slow functional decline.

On an optimistic note, know that even the worst symptoms can usually be treated - there's a drug, there's a behavioral modification, there's an environmental change...there's always something that can be done to improve symptoms or increase comfort. Make sure the doctors involved in your grandfather's care share that view.


Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at

Tue Jun 26, 2007 2:18 pm
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Joined: Tue Jun 26, 2007 11:15 am
Posts: 3
Location: milwaukee, WI
Post Re: How to care for someone at home.
Thank you so much for your insight and info. We have done some of the things that you mentioned already. We moved his bed to the downstairs and there are grab bars in the shower, though he also has an aide help him shower. We have tried to get him to go to the local senior center as it is a small town and we know he would know everyone there but he is very resistant to the idea. We continue to try to get him out of the house to do things but he is often tired and he has vein ulcers in his shins which keep him from walking too much if they get too bad. Once again thank you for everything. Take care.

Wed Jun 27, 2007 2:13 pm
Dear Kimbles,
I know it is very hard to get a LO to the care centers but perhaps, someone could go with him the first time to help him settle in, I did this with my Mother in Law yrs ago and it worked like a charm and she had AD. Good Luck! :)

Wed Jun 27, 2007 2:50 pm
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