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
This article was first posted on EbenezerMemoryCare.org/blog. You can visit this website for more resources on caring for someone with dementia.
It will probably come as no shock to caregivers out there, that persons with dementia can at times be very stubborn, critical or emotional. They might start yelling or become physically aggressive. Upsets can escalate quickly and become extreme. The person might refuse to let you, the caregiver, assist them with personal care. It may seem to you that your loved one is responding “inappropriately,” and that this reaction is out of balance to the situation. Why must they get so upset over what seems to you to be something quite insignificant? Why won’t Mom let you comb her hair, for example, when she’s always been so particular about how she looked?
The first thing to realize, and it can be tough for family members to reframe things in this way, is that the person with dementia is not acting “inappropriately.” They are simply responding the only way they know how, given that their brain is damaged. Mom won’t let you comb her hair because she is trying desperately to communicate a need. Maybe her head hurts. Maybe the feel of the comb going through her hair is tingly and unpleasant. Maybe she simply wants to do it herself and not feel like she is being treated like a child. These feelings and/or sensations will be more important to Mom than that fact that Mom used to pay more attention to her appearance, which Mom is not at all concerned with right now.
Mom’s brain is no longer wired to think the way she used to think. But Mom is still a person, with very real needs. It is our job as caregivers to do our best to identify what the need is, and to respond in such a way that the person feels soothed and validated, rather than aggravated.
Some common causes of these so-called “catastrophic reactions” are as follows:
• The person is trying to do something that they can no longer manage
• The person is being asked to multi-task, which is very difficult for a person with dementia
• The caregiver is rushing the person with dementia
• The person does not want to look incompetent or incapable
• The person doesn’t understand what they were asked to do
• The person is tired or doesn’t feel well
Tips for responding effectively to these situations:
• Remain calm.
• Do not argue with the person.
• Without hurrying, and in a matter of fact manner, remove the person from whatever is causing their upset. Do not ask them to complete a task, if that is the frustration. Let them stop. Do not force them in any way.
• Validate whatever feelings the person has, i.e.: “Of course you’re frustrated.” “I would feel that way, too.”
• Reassure the person, once they have calmed down. “I’ll take care of it. I know you’re doing the best you can.” “Mom, you know what, your hair looks just fine as is.” Our priorities need to be flexible when we are caring for a person with dementia.
• Apologize, even if you are not sure what you might have had to do with your loved one’s upset. “I’m sorry if I made things worse, Mom.”
This blog was inspired by information found in The 36 Hour Day, by Nancy L. Mace and Peter V. Rabins, a book often referred to as “the Bible” of dementia care.
--Marysue Moses, Ebenezer Dementia Care Program Coordinator
This post can also be found on EbenezerMemoryCare.org.