Florence Mankhanamba
Dementia & Hallucinations: What Families Need to Know
Hallucinations can be one of the most distressing symptoms of dementia—not just for the person living with the condition, but for the people who love them. When someone begins to see things that aren’t there, it can shake your sense of safety, control, and understanding. Yet behind every hallucination is a brain trying its best to make sense of a world it can no longer interpret clearly.
What They Commonly See
Many people with dementia report seeing:
- Bed bugs or insects crawling on bedding or clothing
- Animals, often small ones like cats, dogs, or birds
- Children, sometimes playing, sometimes standing quietly
These images feel real to them. Their brain is filling in gaps caused by changes in vision, memory, and perception. What looks like a shadow to you may appear as a crawling insect to them. A patterned blanket might transform into a group of small animals. A coat hanging on a door may be interpreted as a child.
Why It Happens
Hallucinations often occur in:
- Lewy Body dementia
- Parkinson’s disease dementia
- Advanced Alzheimer’s disease
They can also be triggered by infections, dehydration, pain, medication changes, or sensory loss (like poor eyesight). This is why it’s so important to look beyond the behaviour and ask: What is their brain trying to tell us?
How to Respond with Compassion
Your reaction matters more than you realise.
- Stay calm even if the hallucination feels frightening to them.
- Acknowledge their experience: “I can see that feels real for you.”
- Reassure gently: “You’re safe. I’m right here with you.”
- Avoid arguing—logic cannot override a distressed brain.
- Check the environment for shadows, reflections, or clutter that may be triggering the vision.
Sometimes, simply turning on a light, closing a curtain, or offering a comforting touch can ease the moment.
When to Seek Help
If hallucinations:
- Become frequent
- Cause fear or agitation
- Lead to unsafe behaviours
- Appear suddenly
…it’s time to speak with a GP, dementia specialist, or community mental health team. Sudden hallucinations can be a sign of infection or delirium and need urgent assessment.
You Are Not Alone
Caring for someone who sees things you cannot see is emotionally heavy. It’s okay to feel overwhelmed. It’s okay to ask for help. Support is not a luxury—it’s a lifeline.
For guidance, connection, and a safe space to learn, reach out to:
- Alzheimer’s Society Dementia Support Line
- Local Memory Assessment Services
- Carer support groups in your area
You deserve support just as much as the person you care for.
Written by Florence Mankhanamba
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🔥 Lewy Body Dementia is the dementia that doesn’t sit still — and neither do the carers.
Lewy Body Dementia (LBD) is one of the most unpredictable journeys a family or care team will ever walk. It is the dementia that shifts without warning — cognition, movement, mood, sleep, and reality itself can change within minutes. Research describes LBD as a condition marked by “fluctuating attention, vivid hallucinations, and Parkinsonian features” (Alzheimer’s Society, 2024). But those words barely scratch the surface of what it feels like to live it, or to care for someone who does.
For the person living with LBD, the world does not stay still. One moment they may be alert, articulate, and aware — and the next, frozen in fear, unable to move, or trapped in a hallucination that feels as real as the chair in front of them. These hallucinations are not imagination; they are lived experiences shaped by changes in the brain’s processing of visual information (NHS, 2023). And when someone says, “I know it’s not real, but I can still see it,” they are telling their truth. They deserve to be believed.
And then there are the carers — the ones who never sit still either. Carers supporting someone with LBD live in a constant state of emotional and physical readiness. They learn to read micro‑expressions, anticipate fear before it surfaces, and adapt to a reality that changes faster than they can prepare for. They are the steady hands in a world that keeps shifting. They are the ones who must stay calm when the person they love is terrified by shadows, strangers, or shapes only they can see.
Caring for someone with LBD requires a different kind of compassion — one that validates the emotion, not the hallucination. One that understands that arguing with their reality only deepens distress. One that recognises that the person is not “being difficult”; their brain is fighting a battle they cannot control. Approaching from the side, using soft tone, maintaining consistent lighting, and offering reassurance rather than correction are not just techniques — they are lifelines.
But carers need lifelines too. They need space to breathe, to cry, to rest, to be human. They need professionals who listen, families who understand, and communities that don’t judge what they cannot see. They need to hear that exhaustion is not failure — it is evidence of love in motion. LBD carers carry a weight that is rarely acknowledged, yet they show up again and again, even when their hearts are breaking.
What matters most in Lewy Body Dementia is not perfection — it is partnership. The person living with LBD needs safety, predictability, and gentle reassurance. The carer needs validation, support, and a team that understands the complexity of this condition. Both need compassion. Both need patience. Both need to be seen.
Lewy Body Dementia doesn’t sit still — and neither do the people who love through it.
This is why we must talk about it.
This is why we must raise awareness.
This is why we must support the carers and honour the lived experience of those navigating this unpredictable, relentless condition.
— Florence Mankhanamba
LewyBodyDementia #DementiaAdvocacy #CaregiverSupport #FlorenceMankhanamba
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