Memory care for Lewy body dementia
Nearly everything written about memory care was written about Alzheimer's disease. Lewy body dementia behaves differently enough that a home which only really knows Alzheimer's will misread your husband in specific and fairly predictable ways. You have probably already had the experience of explaining that to somebody who nodded and then carried on as before.
This page is not medical advice and does not replace his neurologist. It covers the features families are told to watch for, and the questions those features turn into when you are deciding where he will live. Lewy body dementia is one of the conditions Gianna Homes cares for.
The day is not one day
Fluctuating cognition is the feature that distinguishes Lewy body dementia most sharply, and the one that causes families the most trouble with other people. He can be lucid and funny at breakfast and unreachable by four, and clear again the next morning. Attention and alertness vary within a day, not just across months.
The consequence is practical. Anybody who sees him for an hour sees a snapshot and believes it. Doctors have told families that nothing is wrong on the strength of a good twenty minutes. When you are looking at a home, ask how a fluctuating day gets recorded, and how the difference between a bad hour and a real change gets passed from one shift to the next. If the answer is vague, the fluctuations will be invisible there.
Seeing things that are not there
Recurring visual hallucinations are common in Lewy body dementia and often well formed: people in the room, children, animals, someone standing in a doorway. They frequently are not frightening to the person having them, which surprises families who expected terror. Misreading shapes in low light, a coat on a chair becoming a person, is common too.
What matters is what the people around him do about it. Arguing generally makes things worse. Whether a hallucination is treated as a crisis, as something to be sat with calmly, or as a reason to reach for medication is a real difference between homes. Ask any place you are considering to tell you concretely what their people are taught to do when a resident says there is someone in the room.
The medication warning you were probably given
Many people with Lewy body dementia react badly to certain antipsychotic medications, and this is well enough established that neurologists routinely warn families about it directly, sometimes before anything else. If you have been given that warning, you already know it is not a small footnote.
We are not going to give you medication guidance on a web page. That belongs with his prescriber, and it belongs in writing on his record. What we will say is that it turns into a very specific question to ask a home: who prescribes here, who reviews what he is taking and how often, and what actually happens at two in the morning when somebody is frightened. Listen for whether the answer describes people or describes a policy.
It is a movement condition too
Alongside the thinking, Lewy body dementia often brings stiffness, slowness, a shuffling or unsteady walk, and falls. Blood pressure can drop on standing, which is its own reason people go down. Many people also have acted out dreams for years beforehand, sometimes long before anything else appeared, which in hindsight is often the earliest sign of all.
So the questions are physical as well. Where would he sleep in relation to the bathroom. Is that route one you would walk at night. What is the actual sequence after a fall, who calls you, and when. A full-time registered nurse supports each of our houses and an RN is on call 24 hours a day, which is the part of that answer we can give you here. Ask everywhere else the same question.
What to ask, specifically
Have you cared for someone with Lewy body dementia before, and what did you learn from it. How would you describe today to me if today were a bad day. Who reviews his medications and how often. Show me the room and walk me from the bed to the bathroom.
Then call Cari Doucette on 952-443-6113 and describe an ordinary week rather than a diagnosis. She will get more from that than from anything on his chart, and so will you.