What is Lewy body dementia?
My husband has been diagnosed with Lewy body dementia. Some days he's almost fine and others he's completely confused, and sometimes he says he sees people who aren't there. Is this normal with this disease?
Seeing someone we love fluctuate between lucidity and confusion is disorienting and exhausting. What you describe fits the pattern of this disease very well — and you're not imagining things.
Why it happens
Lewy body dementia is caused by abnormal deposits of a protein in the brain. It is characterised by marked fluctuations (good days and bad days), frequent visual hallucinations — seeing people or animals that aren't there — and symptoms similar to Parkinson's disease, such as rigidity, slowness, and tremor. Sleep can also be very disturbed.
Practical strategies
- When faced with hallucinations, maintain calm and reassurance; it's rarely worth arguing about reality.
- Ensure good lighting to reduce visual confusion.
- Adapt the environment to prevent falls, given the rigidity.
- Record fluctuations to show the doctor.
What NOT to do
- Do not give medication on your own initiative: certain antipsychotics can be dangerous in this dementia.
- Do not aggressively confront hallucinations.
When to seek professional help
This dementia requires specialised follow-up with a neurologist or psychiatrist, especially regarding medication choices. Always inform any doctor that it is Lewy body dementia. In acute situations, contact the NHS 111 (or equivalent local emergency number) or the emergency department.
"The hallucinations used to scare me until I realised they were part of the disease. Now I respond calmly and he calms down with me." — Anonymous carer