One of the most common questions I hear from families caring for someone with Lewy body dementia is also one of the most painful. It usually comes after a moment of contrast- one visit that felt warm and connected, followed by another that felt distant, tense, or unrecognizable. Families quietly wonder whether something went wrong, whether a caregiver did something differently, or whether they themselves somehow missed something.
Over the years, through both professional practice and lived experience, I’ve learned this truth: most of the time, nothing went wrong.
Lewy body dementia has taught me that this disease does not move in a straight line. It does not follow the gradual, predictable decline many people expect when they hear the word “dementia.” Instead, it fluctuates- sometimes dramatically- between moments of clarity and moments of abrupt disruption. The shift can feel sudden, even shocking, especially when a “good day” is followed closely by a difficult one.
What I’ve come to understand is that these changes are not emotional. They are neurologically driven. In Lewy body dementia, abnormal protein deposits interfere with the brain’s chemical messengers- the systems responsible for attention, alertness, mood, and emotional regulation. On some days, those signals move more smoothly, allowing a person to engage, converse, smile, and connect. On other days, the same pathways falter, and the person may appear withdrawn, flat, irritable, or overwhelmed. I’ve seen these shifts happen within hours- and sometimes within minutes.
Because of this unpredictability, I often find myself helping families gently move away from comparison. Comparing visits. Comparing caregivers. Comparing reactions. Comparison feels natural, but in this disease, it is deeply misleading. It invites blame- of others, or of ourselves- and blame reflects a misunderstanding of what is actually happening in the brain. No one is doing something “more right” or “more wrong.” The difference lies in the brain’s capacity at that moment.
A warm, connected visit does not mean the disease has improved or stabilized. A difficult visit does not mean poor care or lack of skill. Both experiences are real. Both belong to the same condition. What I see most often after these fluctuations is guilt. Caregivers quietly wonder if they failed. Family members grieve the version of their loved one they didn’t get to see that day. Over time, that emotional weight accumulates- silently, unnecessarily.
Understanding the neurological nature of Lewy body dementia has changed the way I approach care. When behavior is recognized as a reflection of brain state, not effort, intention, or affection, something softens. Care shifts from performance to presence. The question moves from “Why wasn’t she like this today?” to “What did her brain allow today?”
And this is the truth I return to, again and again: Even when a person cannot respond, connect, or recognize the way they once did, care still matters. The nervous system still senses calm. The body still registers gentleness. Safety, reassurance, and compassion are felt- even when they cannot be reflected back.
Lewy body dementia has taught me that consistency does not live in behavior. It lives in how we show up. When we truly understand this, guilt gives way to grace- and care becomes more grounded, more supportive, and more humane.
