Lewy Body Dementia, Overview

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

LBD: Three Major Signs

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

LBD: Early Symptoms

hallucinations, usually images of people, animals or objects, sometimes designs; may involve hearing voices or sounds
fluctuating (on/off): changes in alertness and attention which affect cognitive (thinking and memory) abilities
daytime drowsiness
parkinsonisms: mild changes in movement such as slow, stiff movements, occasional tripping or imbalance when walking, less facial expression of emotion, lightheaded or fainting spells, restless leg syndrome (during sleep)
mild personality change; less interest in activities or social events, more restless or less energy, more irritable, more (or less) spontaneous speech or behaviors

LBD: Later Symptoms

depression (may come early on)
frequent short-term memory difficulties
frequent cognitive deficits especially with decision-making, judgment, planning, completing tasks, switching from one activity to another, adapting to change easily; difficulty with language

Care Tips:

Learn about LBD and plan ahead (see Checklist on Family Matters).
Anticholinesterase (prescription) medicine offers help: aricept, exelon, or razadyne.
Accept (do not treat) safe hallucinations; dealing with unsafe hallucinations may involve changes in setting, explaining reality with support for person’s feelings or by distracting the person; prescribed medicine is a final resort.
Daily exercise; physical therapy evaluation with tips for daily exercise.
Occupational therapy (OT) tips and OT evaluation of home setting, especially to increase safety and assist daily general activity at home, in use of transportation, and outdoors.
Allow 15 seconds or more for the “slow” person to answer a question, to add to a conversation, to respond in general, to move or to start an activity.
Caregivers must care routinely for themselves. Help from others and respite are essential.
KISSSSS: keep it short, sweet (as positive as possible; always wear a smile), simple (only one or two directions or steps at a time), safe; same (routines for activities even personal care; routine daily and weekly schedule)

Information & Resources (some web sites & toll free phone numbers): NOTE that Lewy body dementia is also called Lewy body disease or dementia with Lewy bodies.

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
Alzheimer's Association Northern California & Northern Nevada: www.alznorcal.org
Alzheimer's Association|South Central Wisconsin Chapter: www.alzwisc.org/Lewy Body.htm
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, fax (352) 273-5575; MDC; Clinic/MDC Appointments (352)265-8408 (2006)

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