One of the most common types of dementia, Lewy Body Dementia causes problems with thinking, movement, behavior and mood. There are two types of Lewy Body dementia:
1. Dementia with Lewy Bodies. This is when people FIRST have a decline in cognition,
then, within a year, develop movement problems.
2. Parkinson’s Disease Dementia. This is when people FIRST show symptoms of a
movement disorder, then, after a year or more, cognitive symptoms arise.
After the first year, the symptoms of the two types look very similar.
How should you respond to a person’s hallucinations or delusions? Tune in to the person’s emotions. Determine whether the hallucinations are upsetting for the person, or not. If the hallucination or delusion causes no danger or upset for the person, there is no need to do anything except validate the person’s perception or belief, i.e. “Huh. That’s interesting.” If the hallucination is upsetting, respond to the emotion expressed: “I can see why you’re upset.” Agree, sympathize, and validate BEFORE offering reassurance, i.e., “Of course you’re annoyed by all those little people running around. But I’ve got the situation under control.” You can offer the person empathy and concern: “I’d feel that way too, if that was going on in my room. Let’s go for a walk, they’ll go home soon.” Then, clearly and firmly, give the “little people” some direction, i.e., “Okay, kids, you’ve got ten minutes to get out of here.”
A variety of professionals can help manage the person’s disease. Medication may be helpful in some situations. Therapists (physical, speech, and occupational) can help with movement issues, swallowing and vocal problems, and can help to identify ways daily activities can be made easier for the person. Palliative Care Specialists can help manage constipation, sleep disorders and behavior problems.
If you are the primary caregiver for someone with Lewy Body dementia, make sure you have a team of professionals in place, and make sure you find respite for yourself as needed.
--Adapted by Marysue Moses, Ebenezer Dementia Care Program Coordinator, from Lewy Body Dementia Information for Patients, Families and Professionals, NIH Publication No. 13-7907, September 2013
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