Living with Lewy Body Dementia: Three Stories Caregivers Recognise
Everyday Experiences with Visual Hallucinations, Fluctuating Attention, and Sleep Disturbances
The following stories describe experiences common in Lewy Body Dementia. If they feel familiar, you are not alone.
Story 1: “There Are People in the Living Room”
It started quietly. One evening, he looked toward the corner of the room and said: “Who are those people sitting there?”
She followed his gaze. There was nothing there. At first, she thought he was joking. But he was not.
He described them calmly: where they were sitting, what they looked like, what they were doing. He was not afraid. He was simply noticing something she could not see.
Over the next weeks, it happened more often. Sometimes people in the room. Sometimes a dog walking past. Sometimes something moving in the hallway.
She tried to explain: “There is no one there.” But that did not help. Instead, he became uncertain. Then quiet. Then, sometimes, slightly unsettled.
She began to understand something important: This was not imagination. It was his reality.
And the question changed from “Why is he saying this?” to “How do I respond when our realities are different?”
Story 2: “You Were Fine This Morning”
It was a good morning. He was present. They had coffee together. He followed the conversation. For a moment, things felt almost like before.
She felt relief. “Maybe today will be a good day.”
But later that afternoon, everything shifted. He stopped responding. Stared into space. Struggled to follow even simple sentences.
She tried again. “Do you want coffee?” No clear answer. Just silence. Then confusion.
Frustration began to rise. “But you were fine this morning...” She repeated herself. A little louder. A little faster. Nothing changed. Instead, he seemed even more distant.
That was the moment she realised: This was not inconsistency. This was fluctuation.
And the question was not “Why can he not do it now?” but “What is possible in this moment?”
Story 3: “The Night Changed Everything”
At first, the nights were just restless. He moved more than before. Talked in his sleep.
Then one night, it changed. He suddenly sat up in bed. Reached out. Spoke loudly, as if someone was there.
She woke up, startled. Tried to calm him. But he was not really awake. It felt like he was inside something she could not see.
After that, the nights were different. She began to listen for sounds. Wake more easily. Stay half-alert. Even on quiet nights, she could not fully relax.
Daytime became heavier. Less energy. Less patience. More worry.
She realised: It was not just his sleep that had changed. It was her sense of rest.
And slowly, her role shifted from partner to night-time guardian.
What These Stories Have in Common
These experiences are common in Lewy Body Dementia. They may look very different from one family to another. But many share the same core challenges:
• Seeing what others do not see (visual hallucinations)
• Changing from moment to moment (fluctuating cognition)
• Disrupted sleep and increased strain (REM sleep behaviour disorder)
This series is written to help you understand what is happening, why it becomes difficult, and what helps in everyday life.
You do not need to solve everything. But with the right understanding, many situations can become more manageable.
This article is part of a series on Lewy Body Dementia and Functional Supportive Communication.
The series explores how changes in perception, attention, and nervous system regulation affect everyday situations — and how small adjustments in communication can reduce distress and support connection.
Further articles in this series will focus on practical “what to do” approaches in common situations.