More Comprehensive Patient Care Can Slow Symptoms Of Alzheimer’s
Alzheimer’s disease can take a devastating toll, both on people with the disease and their caregivers. People with Alzheimer’s gradually falter at meeting their daily needs in a backwards progression, first losing higher planning functions, then complex skills such as financial management, and eventually simpler skills, including dressing and bathing. This decline has been called retrogenesis, and there are medications that can help slow the process.
But new research finds that also providing the right supportive care can help people with Alzheimer’s live fuller, more productive lives by stalling the slide backwards. Barry Reisberg, a physician at NYU Langone Medical Center, says that a comprehensive care program that included medication coupled with caregiver education, home assessments, and personalized patient training slowed the progression of Alzheimer’s disease symptoms much more than medication alone. The work was presented earlier this week at an Alzheimer’s Association International Conference in London.
Dr. Barry Reisberg is a professor with the Department of Psychiatry and a clinical director with the Aging & Dementia Research Center at NYU Langone Medical Center. He’s based in New York, New York.
IRA FLATOW: This is Science Friday. I’m Ira Flatow. A bit later in the hour, we’ll unpack a particle physics mystery. But first, Alzheimer’s disease often can take a devastating toll both on people with the disease and their caregivers, as people with Alzheimer’s gradually lose the ability to take care of their own basic daily needs. This backwards progression, first losing higher planning functions, then things like skills with money, eventually moving onto the loss of simpler skills, such as dressing and bathing, well, that has been called retrogenesis.
And there are medications that can help slow that decline. But new research finds that providing the right supportive care, in addition to these medications, can help people with Alzheimer’s live fuller, more productive lives, reducing some of those symptoms and stopping the slide backwards. The work was presented earlier this week at an Alzheimer’s Association International Conference in London.
And joining me now to talk about the work is one of the researchers on that project, Dr. Barry Reisberg. He’s a professor in the Department of Psychiatry at the NYU Langone Health Center here in New York. He was also involved with the trials for the Alzheimer’s medication memantine back in 2003. And we should note that a pharmaceutical company that distributes memantine– am I saying that right?
BARRY REISBERG: Memantine–
IRA FLATOW: Memantine.
BARRY REISBERG: –is the way I say it.
IRA FLATOW: Thank you. Glad you’re here.
BARRY REISBERG: But either is acceptable. That’s fine.
IRA FLATOW: They partially funded your study, correct?
BARRY REISBERG: Well, Forest, yeah, did. That’s correct.
IRA FLATOW: And let’s talk about what you found. You found that, in addition to giving them the medication, if you gave support– what kind of support– you could actually make things work out better.
BARRY REISBERG: Right. Right. Well, we call it a CIPCM program, a comprehensive, individualized, person-centered management program. But the important message is that, as you’ve already said, Alzheimer’s disease persons go backwards in terms of normal development. And so at the study where the medic– at the stage where the medication was approved, which we call the moderately severe stage, as you said, people go backwards in terms of losing the ability to dress and to bathe, and losing more basic functions.
So what we realized is that this has a positive side, which is that Alzheimer’s persons can still learn. But they need to learn at their developmental level, at their age level. And so our management program is based upon this realization. So at the most basic level, when Alzheimer’s persons lost the ability to dress themselves, we help the caregiver to learn how to help the person to put on their clothes again.
IRA FLATOW: So in other words, you’re saying they could relearn that skill.
BARRY REISBERG: Exactly. And that goes for everything.
IRA FLATOW: Yeah.
BARRY REISBERG: So and of course– and then there are some other basic concepts that everyone can understand. So currently, these people, as they go backwards, as they reach this stage– and this stage is the stage with the greatest amount of disturbances, this is the most burdensome community stage of Alzheimer’s disease– they’re basically frequently left alone. In other words, the caregivers don’t know what to do with the people.
But so in a certain sense, we empowered the caregivers. We showed the caregivers that they can help the person. They can help the person to help themselves by learning how to dress again, which makes the person with Alzheimer’s feel better. And it makes the person with Alzheimer’s less disturbed. And this has many ramifications.
So children, at six– and these are people really from six– actually, five to two years of age– not only can they learn, but they need activities. And they’re often left on their own. And the same thing happens to them as would happen to children if you left them alone.
IRA FLATOW: Right.
BARRY REISBERG: So they– and if you leave them in a group–
IRA FLATOW: So you don’t want to leave them alone. You want to give them attention and help, and you’re finding–
BARRY REISBERG: You want to give them activities.
IRA FLATOW: How much training? How much do you have to train the caregivers to understand what’s needed, and to [INAUDIBLE]?
BARRY REISBERG: Well, we had a comprehensive program. So we had eight educational sessions lasting three hours each. This was a 28-week program. And also, even beyond– so the educational sessions essentially had the kind of information that I was quickly conveying to you, and understanding the course of the disease. And then also, we went into people’s homes and we looked at the homes, we saw what their needs were. So for example, they might need a bath bar, or they might need a platform in order to be more comfortable when they bathe themselves.
And we provided them with activity. So we learned about the patients, we learned about their backgrounds. So one of these patients had a musical background and used to play the guitar. And he was able to– for the first time, he was able to, at this stage– and again, we’re talking about a stage which is the equivalent of a four or five-year-old, but like a four or five-year-old, he was able to learn to use the harmonica for the first time. And he would come to my office playing the harmonica. And of course, I was– I thought this was great.
IRA FLATOW: You were surprised even by your own results.
BARRY REISBERG: Yeah, I was– well, I was happy. He was happy. And I encouraged him. And I told him how great it was. And that helps everybody. And it gives him dignity. This particular person was a clergy person, so he was accustomed to helping people. And it was possible to give him back his dignity in that regard.
IRA FLATOW: You were not able to– just so that we’re clear, you were not able to stop the decline that normally progresses. But you were able to get the maximum out of each stage of that decline is what you were saying.
BARRY REISBERG: Well–
IRA FLATOW: Or were you able to [? stem it? ?]
BARRY REISBERG: There are three things that happen to Alzheimer’s people. They lose thinking abilities, and they lose functional abilities, and then, in this stage in particular, they develop behavioral disturbances. So we were not able to help them in terms of thinking abilities. And interestingly, the medication is able to help a little bit with thinking abilities.
But we were able to help them functionally. And so functionally, we got an effect which was 750% of the medication on a functional scale, the same scale as was used for the medication. And this is on top of the medication. Everybody got the medication.
IRA FLATOW: Right.
BARRY REISBERG: And when people are able to do things, and they have activities, then of course they become less behaviorally disturbed, just like a child.
IRA FLATOW: This would just seem, like, obvious to people. Is it because these people were just given up, or we give up on Alzheimer’s patients, we don’t think about–
BARRY REISBERG: We compared it. So the numbers I’m giving you, we got in total globally 10 times the effect. And those effects were on functioning and behavior, not cognition. But they sit on top of the medication effect. So this was in comparison with usual community care.
IRA FLATOW: Right.
BARRY REISBERG: So the other people got all the services that are available in the community– support group meetings–
IRA FLATOW: Well, let me– because we’re running out of time, I want to now– how do we empower people to take your study and use what you have learned, and use it in their own facilities?
BARRY REISBERG: Well, the first thing is by them under– again, these are simple principles.
IRA FLATOW: Yes.
BARRY REISBERG: But in fact, taking care of a child is simple principles, the same simple principles. But in actuality, it’s not necessarily that easy. And the same is true here. Having the proper guidance, especially in this disease, where there’s a lot of behavioral disturbances and so forth, is very important. So we want to get this message out. And we want to do it in every way we can. And this is one of those ways.
IRA FLATOW: Is there a new– is there a manual, or is it just simply paying more attention–
BARRY REISBERG: We have published this. It’s a paper. And it does have pages of principles.
IRA FLATOW: And it talks about what you did in your study.
BARRY REISBERG: Exactly. What we did in the principles, and more or less– well, it’s not a guide step by step, it is the principles of what we did.
IRA FLATOW: And do you have any further studies, and how you would take this a step further, perhaps?
BARRY REISBERG: Well, we did a 28-week study, which was the same as the medication. We modeled it on the medication study. They were exactly the same in terms of their thinking abilities, as it happens, as the medication. Exactly the same level. We have an extension that we haven’t fully published yet. We published it as an abstract. We presented it once. And we extended it for a year. And the people got even better.
IRA FLATOW: Really.
BARRY REISBERG: Yeah. So not only do they get better over seven months, but they get better over a year. And we don’t know how long this process could continue, but it makes a huge difference for the people. And you know, as you say, we need to get this message out. And this is a first step in that regard.
IRA FLATOW: And so we have– we’re helping you get that message out, because this is a growing problem, right? This is not going away, Alzheimer’s, and the med– could it be similar to other dementias, or is it just Alzheimer’s?
BARRY REISBERG: Other dementias are, in general, quite similar to Alzheimer’s disease.
IRA FLATOW: Yeah.
BARRY REISBERG: So this is likely– these principles should apply for other dementias, as well.
IRA FLATOW: Dr. Reisberg, thank you.
BARRY REISBERG: Thank you.
IRA FLATOW: For taking time to talk with us today. Dr. Barry Reisberg is a professor in the Department of Psychiatry and director of the Zachary and Elizabeth Fisher Alzheimer’s Disease Education and Resources Program. That’s at NYU Langone Health here in New York City.
We’re going to take a break. And when we come back, a new particle-smashing experiment could challenge what we know about the universe if they– well, if they can prove this experiment to be true. If they can prove it and do it again and convince people, we’ve got a little head-scratching news to talk about. So stay with us.