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
- 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;
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)