Q. Dear Doctors:
My 70 year old sister has just been diagnosed with Lewy Body Dementia. She has had test after test, including MRI's, CT scans, and spinal tap. She and her husband are so worried and stressed. She has balance problems with frequent falls, and now uses a walker. Her husband has to watch her constantly. She also has hallucinations where she sees a cat, a little girl, and talks to relatives who are not there. She knows that these are hallucinations, but finds them comforting. Sometimes she forgets events from the day before, but she is always aware of where she is, what day it is, etc. On her good days, she seems “like her old self”, and with the help of her husband, can go to church or visit family. I would like to know what to expect next. Please tell me more about this disease and, most of all, what I can do to help. Christine L., age 67
A. from Dr. Bailey:
Lewy Body Dementia (LBD) is second only to Alzheimer's Disease as the leading cause of dementia in the elderly. LBD differs from Alzheimer's and other dementias in that abnormal round structures called Lewy Bodies develop in the parts of the brain that control movement and thinking. Symptoms include confusion about time and place, motor rigidity and tremors, and frequently hallucinations. These can be benign or frightening. One must be careful with medications because the medications used to treat the motor problems may worsen the hallucinations, and the medications used to treat the hallucinations may worsen the motor problems. This is, unfortunately, a progressive disease. This means that the family must begin to consider what assistance will be needed in the future as she becomes less able to take care of herself.
A. from Dr. McDonald:
It has to be difficult to watch the changes that your sister is going through. Please urge her and her husband to take every step to ensure home safety. It is time to accept the help of others, whether it's from you, other extended family members, community volunteers, or home health aides. Knowing that your sister is hallucinating can be very upsetting. If the hallucinations are troubling to her, you can reassure her, and comfort her with words (for example, “I'm here with you and I'll make sure you're OK.”) and distractions (such as going to another room, providing something to eat or drink, or watching a favorite program). Please don't challenge her about what she is experiencing! Her brain is producing experiences that feel absolutely real to her, and she cannot switch this off at will. Oftentimes the hallucinations can be quite positive and comforting, for example, the cat who sits at the end of the bed, or favorite relatives who appear and have positive conversations. In those instances, let her talk about what's happening. You'll probably find that she wants to share these experiences and appreciates your supportive listening. You will help her beyond measure by providing this kind of emotional support. And lastly, because you are her sister, you have a special history in common. Reminisce with her whenever possible. Look through the photo albums and talk about the times you've shared together...as sisters.
