Tip Sheet: Lewy Body Dementia

Lewy Body Dementia (LBD) is the 2nd (or 3rd) most prevalent progressive dementia.

LBD: Three Major Signs

  1. Hallucinations, typically visual (images)
  2. Fluctuating (on/off): attention and cognition (thinking & memory abilities)
  3. Parkinsonisms: changes in movement such as slow, stiff movements, shuffle walking, falls, less face expression, restless leg syndrome (during sleep)

CAUTION: antipsychotic medicine to treat hallucinations or sleep problems may lead to extreme behaviors, opposite to the expected result

Care Tips

  1. Learn about LBD and plan ahead (see Checklist on Family Matters).
  2. Anticholinesterase (prescription) medicine: aricept, exelon, or razadyne.
  3. Accept (do not treat) safe hallucinations; deal with setting or distract person to defuse unsafe hallucinations (medicine is a last resort).
  4. Daily exercise; physical therapy evaluation and tips for daily exercise.
  5. Occupational therapy (OT) tips and OT evaluation of home setting.
  6. Allow 15 seconds or more for the “slow” person to answer, respond, move or start an activity.
  7. Caregivers must care routinely for themselves. Help from others and respite are essential.
  8. KISSSSS: keep it short, sweet, simple, safe; same (routine).

Information & Resources: some web sites & toll free phone numbers:

Alzheimer’s Association (USA): www.alz.org or www.alzheimers.com (800) 272-3900
Alzheimer Society of Canada: www.alzheimer.ca
Alzheimer’s Society (United Kingdom): www.alzheimers.org.uk
AlzOnline (at University of Florida): alzonline.phhp.ufl.edu
American Academy of Neurology: www.aan.com; www.thebrainmatters.org
Family Caregiver Alliance: www.caregiver.org; (800) 445-8106
Helpguide, Aging Issues: www.helpguide.org/elder/lewy_body_disease.htm
Lewy Body Dementia Association, Inc.: www.lewybodydementia.org
Lewy Body Journal (a family’s personal story): www.lewybodyjournal.org
Los Angeles Caregiver Resource Center: http://geroweb.usc.edu/lacrc; (800) 540-4442
National Institute of Neurological Disorders and Stroke: www.ninds.nih.gov/disorders

Prepared by: Leilani Doty, PhD, Administrator, Florida Department of Elder Affairs, Alzheimer’s Disease Initiative, University of Florida Memory Disorder Clinic (MDC),Box 100236, McKnight Brain Institute, Gainesville, FL 32610-0236, Office (352)273-5555; MDC Appointments: (352)265-8408 (2006)


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College of Public Health and Health Professions, University of Florida