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.
- Cognitive fluctuations. There can be unpredictable changes in the person’s ability to be alert, awake and attentive. Interestingly, unlike Alzheimer’s disease, memory problems may NOT always be evident when someone has Lewy Body dementia.
- Depression, apathy and paranoia. The person might exhibit intense fear about the future.
- Hallucinations (the person sees, hears, smells, tastes or touches something that is not there. This may or may not be frightening for the person.
- Delusions (strongly held false beliefs). For example, a person with Lewy Body dementia might at times think that a loved one is not who they say they are, or that the loved one has been replaced by an imposter. Do not try to argue with a person with any kind of dementia! You will never win the argument! If a wife, Mary, doesn’t believe that George is her husband, George could say, “George sent me. He couldn’t come today, but he wants me to make sure you’re all right. Can I help you with anything? ”
- Sleep disorders. Persons with Lewy Body dementia sometimes physically act out their dreams, making violent movements while asleep, or falling out of bed. These people often are excessively sleepy in the daytime.
- Muscle rigidity, a frozen stance, a shuffling gait and tremors, especially in hands.
- Difficulty swallowing or a weak voice
- Dizziness, fainting, constipation and sensitivity to heat and cold
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