I See People

Hallucinations are one of the hallmark symptoms of Lewy Body Dementia (LBD) and dealing with them can be one of the most frustrating parts of the disease. The hard thing about hallucinations is that LBD patients can’t be given any of the drugs that are typically used to treat the hallucinations. Most of them fall into a category of drugs call neuroleptics that can cause problems with cognition, coma, or even death. So, that leaves patients and care givers with no real recourse.

Without medications to keep the visions (the hallucinations are mainly visual, but some people do experience audible hallucinations) at bay caregivers are often left not knowing what to do for their loved ones. Much of the current literature purports the hallucinations are usually not frightening for the patient, but my experience has been that this is not always the case. Mom had extenuating circumstances in her life before Lewy came that caused the hallucinations to be more frightening for her at times. But, I have talked with caregivers whose loved ones also have fears over them.

So, if you can’t give medication to help, what can you do?

When visions encroach on life, distraction is one of the best ways to react. If you can get your loved one to think about something else even for a few minutes that is often enough for the hold to be broken and the hallucination to stop.

Some things we found useful for distraction:

• Photo albums with family, friends, vacations and other cherished memories. Point to a person or item in the picture and start the memory, “Remember when I was ten and we went to the carnival and I rode the merry go round?”

• Funny stories or information about the family, “Hey, did I tell you that I talked to Aunt Suzy today and she told me that her dog did the funnies thing.”

• Singing….yes, even if you aren’t a great singer. I can’t carry a tune in a bucket, but during hallucinations I would sometimes start singing, “Oh, I wish I was an Oscar Meyer wiener.” Just the craziness of it would be enough to break the hold.

• Well loved items that carried significance for your loved ones. These are great to start a conversation with the loved one.

The experts say you should validate what the person is experiencing, but not play along with the hallucination. Playing along can be tricky since you don’t know the details of what they are seeing and making a misstep can make the person angry. However, we found that sometimes there just wasn’t anything else we could do. Dad was known at times to stomp down the stairs, open the front door, and shout, “Get out of our house, we don’t want you here.” Then he would slam the door. It was always used as a last resort.

The key is to get them thinking about something other than what they are seeing.



Caregivers, do you have other suggestions that you have found to work for you?