LEADER Principles: Hallucinations

This fourth in the LEADER Principles of Interaction series is about hallucinations. Hallucination are often the among the least stressful LBD-related behaviors--at least for your loved one. Mary and Frank are back to share their experiences using the LEADER Principles.

Frank started hallucinating well before he had other LBD symptoms. I would just kindly tell him, “Yes, I know you see them, I can’t. They aren’t real—they’re a symptom of your Parkinson’s.” He’d nod and that would be the end of it. Of course, sometimes, he liked to share his “visions” with me because, he said, they were so entertaining. We’d laugh but we both knew that what he was wasn’t real. But that has changed. He doesn’t believe me when I tell him I can’t see what he sees so clearly. – Mary

Learn and Lead

Learn: Lewy bodies that start in a person’s movement control center cause Parkinson’s but in time, these damaged proteins tend to migrate to other areas of the brain. When they migrated to Frank’s visual perception center, he:

• Experienced hallucinations--seeing things that aren’t really there but his thinking abilities were not affected
• Could accept feedback and make judgements about the reality of what he sees.

When Lewy bodies spread into the cognitive areas of Frank’s brain,

• His thinking fade, leaving only basic thinking skills
• He can now only accept what his brain receives first, the hallucination, as real.
• This may also be combined with an emotion and a prefabbed story, a delusion.

These hallucinations may be less stressful for Frank than Mary, who sees them as a step towards dementia. However, by monitoring and changing her behavior, she can lead Frank—and herself—to a more comfortable place for both of them.

Emotions and Empathy. Most hallucinations are benign, that is they don’t trigger strong emotions. The problem often lies with the care partner:

• If Mary feels distressed, her distress will be picked up by Frank as negativity and mirrored as behavior fired by negative emotions
• If Mary tries to do as she’s done in the past and explain away the hallucinations, Frank will feel insulted and will express this with behavior fired by his negative emotions.

Mary can change this by:

• Being careful not to express negative feelings in Frank’s presence
• Empathizing with Frank and thinking of how she’d feel if she firmly believed something but wasn’t given credit for that belief.

Acceptance and Alliance. For her own peace of mind, Mary must

• accept that Frank can no longer accept her explanations. (This makes the empathy possible!)
• Agree with what he sees. Mary doesn’t have to BELIEVE, she just needs to play along, as she might at a child’s tea party.
• Let it be unless the hallucination is unsettling to Frank. She might just nod when Frank tells her Aunt Jane is napping on the sofa, for example. She doesn’t have to try to wake Aunt Jane up or have a conversation with her.
• Join Frank’s reality if necessary, to deal with a stressful hallucination.

Deflect and Do. If the hallucination is stressful to Frank:

• Mary’s acceptance of what he is experiencing as real will likely deflect much of Frank’s stress. He isn’t having to convince her it is real and he has her support.
• Mary can now do something within Frank’s reality to make the hallucination go away. For example, Mary might tell the “bothersome kids” it’s time to go home now and physically usher them out the door.

Entertainment and Enthusiasm. As with any other unwanted behavior, distraction will help Frank to move further away from the experience so that it isn’t retriggered. Distractions need to be:

• Something that Frank enjoys.
• Presented with a positive and enthusiastic attitude that Frank can mirror.

Residual Emotions and Response. These may not be as big an issue with benign hallucinations as they are with other behavior. With unsettling hallucinations, including those Mary doesn’t accept as Frank’s reality:

• emotions generated by the event will be remembered even when the event isn’t. These residual emotions will then be triggered by a new event.
• The quicker Mary can accept Frank’s hallucinations as his reality and deflect any unsettling emotions, the weaker the residual emotions will be when they appear again.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.