Fluctuations in DLB

If you ask families whether somebody with dementia fluctuates, they virtually always say yes. And that doesn’t matter what kind of dementia, but the dementia with Lewy body fluctuations are a bit different in quality. So people with, say Alzheimer’s, very characteristically have good and bad days and they seem a bit better or a bit worse. But people with dementia with Lewy body will fluctuate over very short periods during the day, perhaps while you’re talking to them. And they seem quite engaged and then they’ll seem totally absent. And that can last for minutes or at the very most, hours, when they don’t seem to be attending or looking to be sleepy and sometimes they even fall asleep.

So it’s more a difference in alertness, rather than just that they’re less or more able to do things. I think the worst thing is the fluctuation with Lewy body, because one minute he’s absolutely fine. Well he was, not so much now, but he was absolutely fine and then suddenly he would sort of disappear and become this other person. So looking back, it’s very hard to remember what it was like five, six years ago. Except I suppose I think we used to have good days in a week, and then he went to maybe two good days a week. And then it becomes now, good hours in the day. So the middle of each day is usually fine.

That’s when we go out and play bridge. But to get through it he has a lot of sleeping; a lot of sleeping. And then when he is not himself, he becomes this other person. Very angry and very, whatever I try to do– I think he thinks I’m his gaoler. Sometimes when he hasn’t, maybe the pills haven’t kicked in, he’ll be awake. So his eyes will be open and he would be able to say, can I have a cup of tea. Or I’m going to the toilet. But that’s about all he can do and it’s as if– I describe it to people it’s as if his brain hasn’t woken up yet.

So his eyes are open and he can walk and talk, but his brain is absolutely fast asleep. So sometimes, if you were to wake up and say is it school today, is it work today, what day is it? And you have that 20 seconds of, is it the weekend, I can’t remember, I can’t remember. And that’s how I imagine it is for him every day. Three, four, five times a day. Not remembering quite what am I doing today? Am I going to bridge? Am I seeing Georgia? What’s happening today? And it’s quite scary feeling, I think. You’ve got the problems of cognitive impairment, and the difficulty of memory and orientation and kind of perception that these patients have.

But I think the problem of the cognitive fluctuations can’t be underestimated, because you’re dealing with a kind of moving target in terms of the challenges and the problems and the risks that the patient is posing to themselves and their families. And I think if you’re looking after somebody who’s got Alzheimer’s disease, obviously that’s difficult and a challenge, but at least their problems are a kind of known quantity that you can rely upon from day to day.

The difficulty with DLB is that patients can well because of their fluctuations, they can change from being someone who’s just about capable of independent living to somebody who actually needs to have two or three staff with them to keep them safe and stop them from harming themselves and others, within the space of a few hours. And that makes it very difficult to plan their care and to plan the level of care they need to keep them safe. If it was a constant decline, then you can sort of put in place help, but because I never know when I’m going to need the help, I can’t have somebody sitting around waiting to help him when, you know.

So from that point that’s the hardest thing I find.