Early Signs of Lewy Body Dementia: When Things Feel Unpredictable
Recognising the First Symptoms of LBD and Understanding Fluctuating Alertness
For many families, Lewy Body Dementia does not begin with something clear. There is no single moment where everything changes. Instead, it often starts with a feeling: “Something is not quite right.”
Small Changes That Are Hard to Explain
In the beginning, the changes can be subtle. The person may:
• Seem more tired than usual
• Lose focus in conversations
• Respond slower
• Have moments where they feel “far away”
And then, suddenly, they are back again. Present. Engaged. Almost like before.
This can be confusing. Not only for you, but also for the person themselves.
What Is Happening in the Person
In Lewy Body Dementia, the ability to stay alert and mentally present can vary. This means:
• Attention comes and goes
• Clarity changes during the day
• The person may shift between being “there” and “not quite there”
This is not something they control. It is not about effort or motivation. It is about how the brain manages awareness in the moment.
Why This Becomes So Challenging
Unpredictability creates strain. You may start to notice:
• Plans fall apart
• Conversations change direction suddenly
• Activities that worked yesterday do not work today
You might think: “He could do this yesterday, why not today?” or “She is just not trying.” But this is not about willingness. It is about fluctuating ability.
And that is much harder to relate to than a steady decline. Because you cannot adjust once. You have to adjust all the time.
The Emotional Impact on You
Many caregivers describe the same experience:
• You stay alert all the time
• You try to predict what will happen next
• You feel relief when things go well
• And frustration when they suddenly do not
Over time, this can lead to mental fatigue, uncertainty, and self-doubt. “Am I doing something wrong?”
You are not. You are trying to respond to something that constantly changes.
What Helps in Practice
In this phase, small adjustments can make a big difference.
1. Observe before you act
Take a moment to see: Is the person alert right now? Are they able to focus? Adjust your expectations based on that moment.
2. Lower the demand, not the respect
If the person struggles, simplify the task, reduce choices, give one step at a time. But keep your tone respectful and calm.
3. Follow before you lead
Start where the person is: what are they focused on? What are they able to engage in? Join that first, then guide gently.
4. Think “this moment,” not “the day”
Instead of planning the whole day, focus on what works right now. This reduces frustration for both of you.
What Often Makes It Worse
Some reactions are completely understandable but can increase stress:
• Expecting consistency
• Correcting or pushing
• Interpreting changes as stubbornness
• Trying to “get back to how it was”
This often leads to resistance, withdrawal, and emotional tension.
A Different Way of Understanding
It can help to shift perspective. Instead of asking “Why can they not do this anymore?” try asking “What is possible right now?”
This small shift can change how you respond, how the person experiences the situation, and how the day unfolds.
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.