Patient handout

Dementia with Lewy bodies

PRODUCTION

1. Your condition

This handout is for dementia with lewy bodies. Your care team identified this based on: recurrent well-formed visual hallucinations with progressive cognitive decline (mckeith 2017 core).

Other reasons your team may use this plan: fluctuating attention/alertness + spontaneous parkinsonism (bradykinesia/rigidity/rest tremor) with dementia (mckeith 2017 core); dream-enactment / rem sleep behavior disorder (may predate cognition by years) — prodromal/core dlb (mckeith 2017); severe deterioration / parkinsonism / nms-like reaction after an antipsychotic — strong dlb pointer (mckeith 2017 supportive).

2. Your medications

Take these medications exactly as prescribed. Do not stop or change a dose without talking to your provider.

Medication	Starting dose	How	When	What it does
mckeith_2017_diagnostic_confirmation	—	—	—	McKeith 2017 — dementia + ≥2 core (fluctuation, visual hallucinations, RBD, spontaneous parkinsonism) OR 1 core + ≥1 indicative biomarker (DAT-SPECT/MIBG/PSG) = probable DLB; apply the 1-year rule vs PDD
neuroleptic_avoidance_alert_card_and_ehr_flag	—	—	—	McKeith 2017 / LBDA — SEVERE neuroleptic hypersensitivity (irreversible parkinsonism, NMS-like, autonomic collapse, rapid decline, death) in up to ~50%; patient-held alert card + EHR allergy/alert flag + caregiver and clinician education BEFORE any psychotropic
reversible_cause_workup	—	—	—	NICE NG97 — B12, TSH, depression (GDS-15), medication/anticholinergic burden, structural MRI (NPH/subdural/tumor) excluded/treated before DLB attribution
dlb_indicative_biomarker_imaging	—	—	—	McKeith 2017 — DAT-SPECT/PET, I-123 MIBG cardiac scintigraphy, or PSG-confirmed REM-without-atonia raise diagnostic certainty (possible → probable DLB)

Plan: DLB care ladder — confirm + neuroleptic-avoidance alert → ChEI first-line → cautious levodopa → RBD melatonin → autonomic OH → psychosis (AVOID antipsychotics) → deprescribe + caregiver/ACP/falls

3. When to call your provider

Contact your care team if any of the following happen:

Antipsychotic given/considered or severe neuroleptic sensitivity reaction → urgent neurology + STOP agent (McKeith 2017)
Superimposed delirium or acute deterioration → inpatient workup (AVOID antipsychotic) (NICE NG97)
Severe orthostatic syncope / recurrent injurious falls → urgent autonomic/falls evaluation (McKeith 2017)
Disabling refractory psychosis / caregiver breakdown → inpatient/old-age-psychiatry (NICE NG97)
Rapid progression (<1-2y) → rapid-dementia workup (CJD/autoimmune) (McKeith 2017)

4. When to seek emergency care

Call 911 or go to the nearest emergency room right away if you have:

Severe neuroleptic sensitivity reaction in DLB after an antipsychotic — acute parkinsonism, NMS-like (rigidity/fever/autonomic instability/elevated CK), autonomic collapse, or rapid decline (McKeith 2017)(life-threatening)
Any antipsychotic given or being considered in a patient with visual hallucinations, fluctuation, RBD, or parkinsonism (suspected/confirmed DLB) (McKeith 2017)(life-threatening)
Acute fluctuating inattention/altered consciousness superimposed on baseline DLB fluctuation (commonly missed) (NICE NG97)(life-threatening)
Severe symptomatic orthostatic hypotension with syncope, or recurrent injurious falls from parkinsonism + autonomic failure (McKeith 2017)
Severe distressing or dangerous psychosis/agitation refractory to trigger treatment + non-pharm in DLB (McKeith 2017)

5. Follow-up

Advance care planning revisited at each transition; neuroleptic-avoidance card/alert reinforced with patient, caregivers, and all treating clinicians; driving/finances/capacity reviewed; falls/autonomic program maintained; caregiver respite/support; palliative/end-of-life planning and ChEI/levodopa deprescribing decisions in advanced disease (NICE NG97)

6. Sources

Guideline: McKeith 2017 DLB Consortium diagnostic criteria (Neurology) + 2024-2025 DLB management reviews + Lewy Body Dementia Association (LBDA); NICE NG97 Dementia; AGS Beers 2023