Why Dementia Patients Seem Different from Moment to Moment
Understanding Fluctuating Presence and Changing Abilities in Lewy Body Dementia
Many families describe the same experience: “It feels like I meet different versions of the same person.”
One moment, the person is present. They understand, respond, even joke. Later, they seem distant. Slow. Disconnected.
This shift can happen quickly. And it can be deeply confusing.
What Is Happening in the Person
In Lewy Body Dementia, the brain struggles to maintain stable attention and awareness. This means:
• The ability to stay mentally “online” varies
• The connection to the surroundings can weaken
• Responses can become delayed or incomplete
The person is not choosing to withdraw. They are not “switching off.” Their brain is simply not able to stay consistently engaged.
Presence Is Not Constant
It can help to think of presence as something that comes and goes.
At times, the person may follow conversations, make decisions, and interact naturally.
At other times, they may lose track of what is happening, struggle to respond, and appear uninterested or confused.
These changes are real. And they are part of the condition.
Why This Becomes So Difficult to Understand
From the outside, it can look inconsistent. You may think: “He understood this earlier” or “She knows what this is.”
So when the person suddenly cannot respond, it can feel like resistance, lack of effort, or even refusal.
But this interpretation does not match what is actually happening. The ability is not stable.
The Gap Between Ability and Expectation
Many difficult situations arise in this gap: what the person could do before versus what the person can do right now.
If expectations stay the same while ability changes, tension increases. The person may feel pressured, become confused, or withdraw. And you may feel frustrated, rejected, or unsure how to respond.
Slowness Is Not the Same as Refusal
Another common change is slowed processing. The person may take longer to understand, need more time to respond, or pause before acting.
If we move too quickly, it can look like they are not responding. But often, they just need more time.
What Helps in Practice
Small changes in how you communicate can make a big difference.
Slow down your pace: Give time after asking a question or giving an instruction. Wait before repeating.
Use one message at a time: Instead of multiple instructions, use one clear step. Then pause.
Look for signs of presence: Before engaging, notice eye contact, facial response, and body orientation. If these are reduced, lower the demand.
Support without taking over: If the person struggles, guide gently, start the action together, and use simple cues.
Follow before leading: Join what the person is able to focus on. Then guide step by step.
A Different Way of Seeing the Person
Instead of thinking “They are not responding,” try “They are not able to stay connected right now.”
This shift can change your approach: from pushing to supporting, from correcting to guiding, from frustration to understanding.
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.