Question:
My dad has been having problems for about a year now, starting when he had apacemaker put in and his docs changed his heart medication and such. Somemedications made him flip out, want to leave his wife, etc. I thought it wasa result of all the drugs being fiddled with and the pacemaker being put in,but recently he has been diagnosed with Lewy Body Dementia.

I've looked online a bit, I know it's not the same as Alzheimers, but seemsto be related. Dad can be all right some days, other days there arehallucinations. Nothing that seems to upset him really - sometimes he'llwalk into the room and ask his wife where all the kids went, or ask whythere are so many people in his bed. Most of the hallucinations seem to bejust an imaginary fellow he calls Dave. Last night I went out to dinner withDad and his wife, and as I got in the car he explained how he had tried totalk Dave into coming with us, but he didn't want to. Later on, his wifetold me how mad Dad had gotten earlier when they came to pick me up - heasked her why she wasn't pulling up to the front door to pick up Dave. Notgetting a satisfactory answer, he got mad.

So, I've never heard of Lewy Body Dementia before. Is anyone out thereexperienced with it? After doing some research online, I realize now that hewill not get better...but how fast is the downhill ride going to be?

Answer: Other people are much better with the advise of what to read, and how toprepare. All I can give is our experience with frontal lobe dementia. Myfather in law had a different kind of frontal lobe dementia, but theprogression is similar to LBD.

The biggest difference is the LO's lose function from the front of the brainfirst, then it creeps more towards the back. In AD, the progression is fromthe back towards the front.

Memory stays a little longer, but they have trouble finding the word theywant to use, so they 'talk around' something. Control over emotion,especially volatile ones goes sooner. And anything with an emotionalcomponent is remembered longer than facts. They seem like the same person inmany ways, but the loss of emotional control makes them very hard to dealwith.

Hallucinations occur earlier, and motor skills hang around longer.'Executive function,' knowing what order to do things (like bathe - take offclothes, turn on water, get into tub, get wet...) gets lost. So they thinkthey know how to drive (or cook, or do woodworking...) because they rememberthat they drive/drove. Get nearly violent if you suggest that maybe it's nota good idea. But will get lost on streets they have traveled their wholelives, even when they can remember the steps for starting and driving a car.

Later, social appropriateness can be lost - like remembering one needs to bedressed in public. Oral skills are lost much sooner.

I would suggest doing a google search under "frontal lobe dementia." Of thedementias, it is particularly cruel, as communication skills are lost soonerthan with AD. And then they lose oral motor skills but can hang around fora long time after that. It's really sad.

My FIL lost oral motor skills after anesthesia during surgery to repair ahip fracture. He developed aspiration pneumonia and didn't recover from it.