Am I experiencing complex visual hallucinations of places and people, and could this be Lewy-body dementia, Charles Bonnet syndrome, or temporal‑lobe epilepsy?

Diagnostic Approach to Complex Visual Hallucinations of Places and People

Your neurologist is correct that complex visual hallucinations of places and people are characteristic of specific neurological conditions, and you need urgent systematic evaluation to distinguish between Charles Bonnet syndrome, dementia with Lewy bodies, and temporal lobe epilepsy—each requiring different management and having vastly different prognoses. 1

Critical First Steps: Rule Out Vision-Threatening Emergencies

Before attributing hallucinations to neurological causes, you must undergo same-day ophthalmologic examination (within 24 hours) if these are new-onset visual phenomena, because retinal tears occur in 8–22% of patients presenting with visual disturbances and can cause permanent vision loss if untreated 2. When retinal detachment is identified early, approximately 95% can be successfully repaired with better visual outcomes 2.

Key Diagnostic Features That Distinguish These Conditions

Charles Bonnet Syndrome (CBS)

CBS is the most likely diagnosis if you have ALL four of these features: 1, 2

• Recurrent, vivid visual hallucinations (including complex images of places and people)
• Preserved insight that what you see is not real (this is the critical distinguishing feature)
• Some degree of vision loss (reduced acuity, contrast sensitivity, or visual field defects)
• No other neurological or psychiatric condition explaining the hallucinations

CBS occurs in 15–60% of visually impaired patients and results from cortical-release phenomena due to diminished visual input 1, 2. The hallucinations are benign and do not indicate dementia or psychiatric illness when insight is preserved 2.

Dementia with Lewy Bodies (DLB)

Red flags that suggest DLB instead of CBS: 3, 1

• Loss of insight about hallucinations being unreal (you believe they are real or interact with them)
• Visual hallucinations occurring in up to 80% of DLB patients, often appearing early in disease course 1
• Accompanying cognitive fluctuations (varying levels of alertness or confusion throughout the day)
• Spontaneous parkinsonian features (tremor, rigidity, slow movement)
• History of REM sleep behavior disorder (acting out dreams physically)

DLB hallucinations are typically well-formed and recurrent, similar to CBS, but the lack of insight and presence of cognitive/motor symptoms distinguish it 3, 1.

Temporal Lobe Epilepsy

Features suggesting epileptic hallucinations: 4

• Hallucinations associated with altered consciousness or confusion
• Brief duration (seconds to minutes rather than sustained)
• Stereotyped content (same hallucination recurring identically)
• Other seizure manifestations (automatisms, postictal confusion)

Complex visual hallucinations can occur after occipital cortical lesions or resection in epilepsy patients, though this is rare 4.

Essential Diagnostic Workup

Immediate Assessments Required

Comprehensive ophthalmologic examination: 1, 2

• Visual acuity, contrast sensitivity, visual field testing
• Retinal examination to identify macular degeneration, diabetic retinopathy, glaucoma, or other pathology
• This is essential because CBS requires documented vision loss

Neurological evaluation with brain MRI (preferred over CT): 1

• Rule out structural lesions, stroke, tumors, or other intracranial processes
• MRI better visualizes posterior cortical regions relevant to visual processing 1

Cognitive assessment: 3, 1

• Formal neuropsychological testing to detect subtle cognitive deficits
• Critical caveat: Research shows that 14 of 14 CBS patients had neuropsychological changes associated with early dementia stages 5, and CBS may be a harbinger of DLB in some cases 6, 7
• This means even "typical" CBS warrants ongoing cognitive monitoring

Medication review: 1

• Screen for anticholinergics, steroids, dopaminergic agents, propranolol—all can provoke visual hallucinations
• This is a common and reversible cause

Additional Testing Based on Clinical Suspicion

EEG if seizures suspected: 1, 4

• Long-term video-EEG monitoring may be needed to capture events
• Absence of electrographic seizures during hallucinations helps exclude epilepsy 4

Laboratory screening: 1

• CBC, comprehensive metabolic panel, toxicology screen, urinalysis
• Rule out metabolic derangements, infections, or toxic causes

Management Algorithm

If CBS is Diagnosed (All Four Criteria Met)

Step 1: Education is first-line therapeutic intervention 1, 2

• Explaining that CBS hallucinations are common in visual impairment provides significant relief and reduces anxiety
• Reassure that hallucinations are benign and do not indicate psychiatric illness or dementia

Step 2: Self-management techniques 1, 2

• Eye-movement exercises, adjusting lighting, distraction methods
• Vision rehabilitation referral for lighting modification, magnification, contrast enhancement

Step 3: Screen for depression and anxiety 2

• Vision loss markedly raises risk of mental health deterioration
• Formal psychiatric assessment if severe mood changes, functional interference, or suicidal ideation present

Step 4: Pharmacologic treatment (reserved for severe distress only) 1, 2, 8

• Current evidence shows no significant efficacy of any medication in typical CBS 2
• Antipsychotics should be avoided when insight is preserved, as hallucinations are benign 2
• Limited case-report data suggest donepezil (cholinesterase inhibitor) may help in refractory cases 8, though this is not standard practice

If DLB is Suspected (Loss of Insight + Cognitive/Motor Features)

Cholinesterase inhibitors are preferred: 1

• Rivastigmine and donepezil may reduce hallucinations while improving cognition in DLB
• These are first-line pharmacologic agents for DLB-related hallucinations

Avoid typical antipsychotics: 1

• DLB patients have severe sensitivity to antipsychotics with increased risk of falls, stroke, and death
• Non-pharmacologic interventions (DICE approach: Describe, Investigate, Create, Evaluate) should be prioritized first 1

Critical Pitfalls to Avoid

Do not assume CBS is benign without ongoing monitoring: 6, 5, 7

• Research demonstrates that CBS patients show neuropsychological changes associated with early dementia 5
• CBS may be an early marker for DLB in some patients 6, 7
• You require longitudinal cognitive assessment every 6–12 months even if CBS is diagnosed

Do not dismiss atypical features: 1, 2

• Lack of insight despite education, interactive hallucinations, or concurrent neurological deficits warrant brain MRI and neuropsychiatric evaluation
• These features suggest DLB, not CBS

Do not overlook medication causes: 1

• Medication-induced hallucinations are common and reversible
• Systematic review of all medications is mandatory

Prognosis and Follow-Up

If CBS: Hallucinations are benign but require monitoring for cognitive decline over time, as CBS may precede DLB in some cases 6, 5, 7. Regular neuropsychiatric reassessment is essential 1.

If DLB: This is a progressive neurodegenerative disorder with significant implications for treatment, prognosis, and caregiver planning 3, 1. Early diagnosis allows appropriate cholinergic therapy and avoidance of harmful antipsychotics 1.

If temporal lobe epilepsy: Antiepileptic medications can control seizures and associated hallucinations 4.

Your neurologist's observation about complex hallucinations of places and people is diagnostically significant—now the critical task is systematic evaluation to determine which condition you have, because management and prognosis differ dramatically.