My Dad died with Lewy Body Dementia- my experience was very much like Robin William’s wife they misdiagnosed him.  Having no prior experience with any kind of dementia at all we believed who was suppose to be the top brain Doctor here in RI and he diagnosed alzheimers.  I am very very bitter and I do believe getting the right Doctor will make the difference.  They sent my Dad to Boston for “trials”  all kinds of testing and still this Doctor got it wrong.   We were told when he went to the nursing home (we took care of him 6-1/2 years at home and it was awful to watch) by a neurologist working there (can you believe that).   I would say if you see signs of Parkinson with depression make sure you ask if the doctor knows about Lewy Body.  My Dad started shuffling then he got very very depressed and he hid the fact he was not remembering how to get to work by leaving early.   I am anxious to hear if Dr. Amen thinks scans will help – if the Doctor doesn’t know what he is looking for then it’s a moot point as what happened to us.  My dad had wrong medications as a result of this and we didn’t know how to help him and to this day I cry.

I was so sad when I read about Robin Williams.  SPECT helps to see Lewy Body dementia with decreased occipital lobe function and decreased basal ganglia activity.  There is also a special SPECT study specifically for Parkinson’s Disease called at DAT scan, which we do not do at Amen Clinics.