Do Dementia Care Management Programs Work? A Podcast with David Reuben and Greg Sachs

Eric 00:01

Welcome to the GeriPal Podcast. This is Eric Widera.

Alex 00:03

This is Alex Smith.

Eric 00:04

And Alex, today we’re gonna be talking about comprehensive dementia care management. Does it work?

Eric 00:10

Who are our guests with us today?

Alex 00:12

Our guests today, we’re delighted to welcome back David Reubin, who’s a geriatrician, professor of medicine, director of the Alzheimer’s and Dementia Care Program, and director of the guide program at UCLA. David, welcome back to the GeriPal Podcast.

David 00:25

Glad to be here. Thank you.

Eric 00:26

It seems like a good guest for answering that question. We have another guest with us.

Alex 00:30

We also have Greg Sachs, who’s a geriatrician and palliative care doc and chief of general internal medicine and geriatrics at Indiana University. Greg, welcome to the GeriPal Podcast.

Greg 00:40

Thanks. It’s a pleasure to be here.

Eric 00:42

So recently we just got two JAMA publications authored by our guests that we have links to a podcast around this question about dementia care management programs. But before we go into this topic, Greg, I think you have a song request for Alex.

Greg 00:58

Yes. John Lennon’s Give Peace A Chance.

Eric 01:01

Why did you pick this song?

Greg 01:04

When my team and I were working on the pilot grant for this program where enough of us of an age where the Beatles and John Lennon sort of resonate. So this is the mug my team got me.

Eric 01:17

What does your mug say for our people listening on audio?

Greg 01:20

Give “in” peace a chance. The other side of the mug is not a picture of my face, but it’s John Lennon.

Eric 01:30

The trial was called In Peace. How long did it take you to come up with that acronym, In Peace?

Greg 01:37

Not long, because we had done a study previously at the University of Chicago called Peace Palliative Actions and Alzheimer’s Care Efforts. And when you move to Indiana, you can slap in on the beginning of anything.

Alex 01:52

That’s great. All right, here’s a little bit.

Alex 01:59

(singing)

Eric 03:01

Alright, very nice Alex. We will talk more whether or not we should give in peace a chance. But I was wondering maybe we could take a big step back. I’m going to start with you, Greg. How did you get interested in it sounds like you’ve been interested in this a while, this idea of comprehensive dementia care management.

Greg 03:19

Well, you could go back to an editorial I had the fortune of writing in the New England Journal in 2009, where I go into it in more depth. But basically I grew up watching my grandmother die from dementia, receiving very poor care, dying with no palliative care in place, and with lots of bad things happening to her eventually in the nursing home. And so for essentially decades, the idea of trying to improve care for people with dementia and their families has been a real core of what I’ve been driven by.

Eric 03:56

For our listeners who may have not read it, we will have a link to that New England Journal editorial if you can describe what were the biggest things that you were seeing that was wrong with the care that we were delivering.

Greg 04:09

Well, at that time, I think it was very frequent for people to end up in nursing facilities without any kind of supportive care. They were sedated or given psychotropic medications, and things were done to manage them at the convenience of the staff rather than trying to improve the quality of life with residents and support their families. And there was literally nothing in the way of palliative care or hospice that was provided to patients with dementia at that time. And that’s changed dramatically. And I think that’s a good thing. But it’s still is a piece that needs to be integrated into dementia care management programs. The palliative care part.

Eric 04:53

And we’ll talk about your trial in piece about layering that palliative care into these comprehensive care management programs before we do. Dave, you’ve also been doing this for quite a long time. How did you get interested in creating these programs?

David 05:08

Well, I’ve been doing basically kind of practice redesign research for close to 30 years, and I got a little sidetracked. I was doing a lot of work for the abim, including chairing its board. And when I stepped down from that, when I rotated off, my emails dropped in half and I said, geez, I have some time on my hands. Meanwhile, one of my patients, one of my partner’s patients, was a man whose wife had Alzheimer’s. I covered for her when she was on the inpatient service and he wanted to do something for Alzheimer’s disease.

And so I said, you know, that’s a very needy population. And as I learned more about it and looked at models, including the Indiana model, I realized just how much needs to be done and how terribly devastating this disease is. So I began to focus almost exclusively on dementia, little bit on falls but, well, mostly on dementia. And it’s been incredibly gratifying.

Eric 06:19

And both of you just published some really big studies that usually we wait a little while to dive into it. I think it’s important because I think it’s, as we think about kind of next steps moving forward, what we should learn from it. Maybe we can start off with your trial, David, thinking about what you’re doing at UCLA with this comprehensive DCARE trial. Is that DCare, right?

David 06:42

Yeah. DCare is the name of the study.

Eric 06:44

What does DCare stand for?

David 06:46

The Dementia Care Study. It’s not an acronym.

Eric 06:52

Real briefly, what did you do in this study?

David 06:55

So it wasn’t actually done at ucla. None of the clinical trial sites? The four clinical trial sites, two were in Texas, one was in Pennsylvania and one was in North Carolina. So we randomized dyads, basically persons living with dementia and their caregivers to one of three arms. One arm is health system dementia care, which is based off of the UCLA Alzheimer’s and Dementia Care program. It involved co management with a nurse practitioner or a physician’s assistant who is based in the healthcare system. Second arm was community based.

Eric 07:36

Before we go into that for that arm, did they have specific training on how to care for dementia or were they just.

David 07:42

Oh, yes, they got trained out the yin yang. Yeah. So they got trained, monitored fidelity, all sorts of fidelity things. The second arm was community based dementia care, and that was dementia care that was delivered in community based organizations. Could have been the Alzheimer’s association, it could have been senior center, but they had a dementia care special manager called a care consultant who was either a master’s in social work or a bachelor’s nurse.

And all of that care was delivered telephonically. And then the third arm was usual care and we threw in the 1, 800 Alzheimer’s association helpline that people can call.

Eric 08:29

And the difference between the healthcare system based and the community based, like was the content that they covered and they helped with similar.

David 08:39

The content was not different, it was who was providing it and how. In fact, we’re looking right now, in next two weeks we should finish up. We’re looking at all the quality indicators and see whether they differed or not. But basically the kind of care was very similar. It was who was doing it, how they were doing it.

Speaker 7 09:01

Yeah.

Eric 09:02

And I just want to also acknowledge that both of your studies took place during COVID I’m guessing that influenced a little bit of how, because right. Initially the healthcare system was supposed to be in person.

David 09:17

It was in person, yeah.

Eric 09:18

And did that Shift with COVID Oh, yes.

David 09:22

Nine months into the study, March 16, 2020, all clinical trial research stopped.

David 09:32

And across the country, not just in dementia care, but we got back into the field relatively soon in May. But we had to switch instead of in person care by the dementia care specialist in the healthcare system, ARM to telephone and virtual.

Eric 09:51

So does that mean that the two interventions started looking very similar?

David 09:56

They look more similar. It was different kinds of people delivering them and different access to the health healthcare records and such like that, and consultants, but they were not touching people.

Alex 10:10

Okay, and just back to the dyads, the people with dementia. How would you characterize them in terms of dementia severity?

David 10:19

They were relatively severe. We did a version of MOCA that was administered over the telephone, and they would be considered at least moderate to moderate severe on average. We had no criterion, exclusion criteria other than they had to have a diagnosis of dementia.

Eric 10:41

So you had this intervention. What were you hoping to change?

David 10:45

Well, our primary outcome was dual. We had two primary outcomes. We had hoped to reduce neurobehavioral symptoms in people who were living with dementia and reduce caregiver strain among the caregivers. Those were the two primary outcomes.

Speaker 7 11:04

Yeah.

Eric 11:05

And the npiq, which was the Neuropsychic Inventory, one measure of those behaviors. Did these people have high baseline levels of behavioral issues or caregiver strain?

David 11:19

Yeah, considerably higher than you or me. They had symptoms. I believe there are 15 items on the NPIQ. And, you know, they raised anything from apathy to aggression, agitation, sleep disorders. So most of the people had, you know, two or three symptoms.

Speaker 7 11:41

Okay.

Eric 11:42

Yeah, we’ll get to Greg’s article. Because, Greg, you used NPIQ as a primary outcome, right?

David 11:47

Yeah.

Eric 11:48

So let’s. Maybe we’ll hold off on the NPIQ question.

Alex 11:53

I was wondering if we were gonna get into that now. We’ll get into that in a little bit.

Eric 11:56

That’s quickly, because I want to talk about both of these articles. I think an interesting comparison. But real quick, David, what’d you find?

David 12:08

Okay. So we had kind of mixed outcomes. The two primary outcomes did not differ among the three groups. Not only did they not differ among the two interventions, but also the third group.

Eric 12:22

So no difference in behavioral outcomes for the patient. No difference in this caregiver distress strain.

David 12:30

Index or distress from behavioral symptoms or PHQ8, which is a depression. None of those differed. The one secondary outcome that differed, and it differed significantly with both interventions compared to usual care, was caregiver self efficacy.

Eric 12:47

What does that mean?

David 12:48

That they felt they were able to control, manage this disease better.

Eric 12:54

Okay, so they felt like they could do it better, but there was no difference in strain, no difference in depression symptoms, no difference in behavioral outcomes. What do you make out of that?

David 13:07

Well, there are many interpretations. One interpretation is that, and, well, I’m interested in Greg’s take on this, is maybe the neurobehavioral symptoms and distress responses is not the right outcome. You know, maybe that’s not, you know, maybe that’s too hard an outcome to move and maybe it’s not capturing the right things. So one of the questions is, are these the right outcomes? The second is, and this is a lesson I would give to all budding research, do not do a randomized clinical trial during a pandemic.

Eric 13:47

Right.

David 13:48

Not the right.

Eric 13:48

Should have known better, David. Should have known better.

David 13:52

Yeah, it’s wrong time to do this because. And I’m certain Greg ran into this as well, but you know, these community based services, as you want to refer people to closed. Right, the people who are living in assisted living, their family couldn’t visit them, they couldn’t get caregivers, you know, all sorts of things that really, what we anticipated would be parts of the intervention couldn’t be delivered, plus all the psychological overhead of the disease itself.

Eric 14:25

I got a question though, David. Let’s say that study was wildly positive. Would you say, though, the generalizability of it should be thrown out of the question because it occurred during a pandemic and post pandemic, we’re not in the same environment. Like, would the opposite have been true too?

David 14:43

Well, that, that would advocate for, you know, having more pandemics. Try to have a pandemic group going all the time, because those are the only conditions under which it works.

Greg 14:55

We’re working on that.

Alex 14:56

Right, right.

Eric 14:58

No, but the question is, like, when we do these studies, like maybe in an area in pandemic where there are not a lot of other resources, adding this extra layer of support actually helps in those times. But should we think differently?

Alex 15:11

Yeah, maybe it’s like a high bar to pass. Right. If you can. If this actually shows a change during a pandemic, then, wow, what’s it going to show outside of a pandemic?

Eric 15:20

Or will it show anything because the resources weren’t there?

Alex 15:23

There are two ways to look at it.

Eric 15:24

Yes, I do want to ask the question about the primary outcome. Yeah, we’ll get, we’ll get to that. But before we do, let’s actually talk about Greg’s study, because I think it’s going to be an interesting comparison between the two. Greg, so you did your study, which is comprehensive dementia care, but on top of that, layered palliative care, is that right? So this is the NP study.

Alex 15:48

What did you do?

Greg 15:49

So the layering of palliative care was essentially by having the interventionists, who were a nurse and a social worker, each caring for a group of dyads of patients with dementia and their family caregivers who were trained in palliative care in addition to the dementia care management model. And so the social worker had worked in hospice previously, the nurse had worked on another palliative care grant, and they were both trained in advanced care planning and goals of care conversations. So we had specific, you know, sort of modules that we wanted them to try to incorporate into their ongoing care.

And their intervention was contacting the family caregiver on a monthly basis and trying to pick up early on on changes in patient symptoms, caregiver distress, other kinds of clinical changes, so that we could intervene quickly and hopefully before people needed to go to the emergency room or hospital or even necessarily go to their clinician like their primary care doctor. And we’re a little bit different than what David described. We were doing this in central Indiana in two health systems collaborating with their primary care practitioners. And our entry criteria included that people had to have more advanced disease.

So we set it up so it had to be fast, stage five through seven, so at least significant impairments and activities of daily living. But it turned out we enrolled people with only stage six and seven, for the most part, there were only a couple of people in stage five. So we ended up.

Eric 17:31

These were all community dwelling people with.

Greg 17:33

Yes, they had to be community dwelling dementia that includes assisted living, but they couldn’t be in a nursing facility and their caregiver had to have regular contact with them on a weekly basis. And like David, we picked the NPIQ as our primary outcome. And the secondary outcomes included the caregiver distress from the neuropsychiatric symptoms, patient symptoms as measured by the smeold, which is measure of symptoms, latent dementia, the PHQ8.

So caregiver depression. And then, very importantly was a measure of, you could call it healthcare utilization, but from a palliative care perspective, keeping people out of the emergency room, in the hospital is a good thing and keeps them from being harmed and suffering all sorts of iatrogenic things. So the combined outcome of ED visits and hospitalizations was our last outcome.

Eric 18:32

David, did you look at that outcome too?

David 18:34

Utilization well, that’s. I was very interested in how Greg got these data. We are funded to look at utilization. That was one of the specific aims that the National Institute on Aging funded us for. However, there’s a problem getting that data out of Medicare. The claims data. Yeah, not so much for fee for service Medicare, but for ma. There’s a year and a half to two year delay and we are still in this waiting for Godot kind of situation.

Eric 19:13

All right, so hopefully we can see that data sometime soon.

Greg 19:16

So we did not want to deal with the nightmare of Medicare data and, or dealing with Medicaid, Medicare managed care. And so ours is based on the fact that we have a very robust health information exchange many decades old here in Indianapolis. And so there’s an arrangement where we could get the permission of the caregivers and patients to access their data through what’s called inpc, so the Indiana Network for Patient Care. And so we actually have. The nice thing about it is we could pick up on ED visits or hospitalizations throughout the region, not just in the two health systems where we were, you know, enrolling patients.

Eric 20:01

And David, can I ask what. I mean, Greg has one more question about your study. I guess David too, like when I think about, you know, a lot of the trials for drugs in dementia, it’s a super white wealthy population and they cite a lot of reasons why they can’t have more diverse populations. Same thing with yours. Super white wealthy?

Greg 20:23

No, we had almost 40% African American or black. And we’re fortunate.

Eric 20:30

Wait, so it can be done?

Greg 20:32

Yes, we made an effort, but we’re also fortunate to be building on a tradition here where we have one of our health systems is a safety net health system that’s very well trusted and loved in the community and has a history of having people participate in research. And so that’s some of the things. We had an old, very frail, home dwelling group of people with a high proportion of people who were black and from a resource poor community.

Eric 21:05

David, how about yours?

David 21:07

We are about 21% non Caucasian, non Latino, including African American, black and Latino. It’s about 21%. So pretty representative of the population.

Eric 21:28

So fascinating. I loved your studies and I think, Greg, I think your study shows, yes, we actually can enroll very diverse populations in these dimensions if we cared about it. Yeah, yeah.

Alex 21:43

What did you find?

Greg 21:45

So like the DCARE study, the NPIQ did not move. So we didn’t have benefit in the neuropsychiatric symptoms. We also did not have any benefit in the other symptoms for the patients. Or the caregiver distress or depression. But we had a pretty dramatic effect on ED visits and hospitalizations. We literally cut them in half, both individually and the combined endpoint were reduced in half, as you said, during a pandemic. So if we were able to have a pill that was the equivalent to Vinpeace, we’d be making billions of dollars in the sense of being able to reduce that kind of utilization.

Eric 22:29

Well, I guess the question for that is if this was a pill. I love this program, has great face validity, but if I was having this podcast about a pill, I would be saying, but the primary outcome was negative here. This was a negative study. The hypothesis that it would improve behavioral symptoms just was negative. And all the other distress didn’t change. These other things didn’t change. Are we just picking and choosing, hey, here’s a secondary outcome that’s positive. Would we have that same bar if it was a pill? I’d probably say no. What do you think about that?

David 23:05

I think you have to categorize these into two big categories. One is clinical benefit. And I would say that both of these studies showed less clinical benefit than had hoped. But I think that utilization is also a very important benefit because if it can reduce utilization, as the NP study showed, you know, that all boats rise, that means more money to do other things, to implement things like guide, et cetera, if you’re spending less money on recurrent emergency visits or hospitalizations. So either if you hit a home run, either way it still adds the score.

Greg 23:50

Yeah. And I think that we’re sort of, in some ways the drug paradigm and the FDA and highlighting primary outcomes is something that we’re kind of stuck with. But in some ways, you know, we could easily have picked the ED visit and hospitalization as the primary outcome. I mean, we wanted a home run where we made things better for patients, caregivers and the healthcare system.

And we have colleagues who are doing other kinds of studies like this where they flip it around and put the utilization as the primary output. So I don’t feel as strongly about like that we were like fishing for something else. I mean, this was a pre specified outcome. It was one of the main aims in the grant proposal. And it would be sort of silly to say, oh, it’s not important after we kept all these people out of the hospital.

Eric 24:42

Great point. I guess. Another question, because let’s talk about the npiq. So this neuropsychiatric inventory, like when I think about neuropsychic symptoms, I think about. We had Helen Kales on Helen Kales, who talked about management of behavioral symptoms in dementia. And she said, you can focus on three things. You can focus on the patient, you can focus on the environment, or you can focus on the caregiver. And what do we do as a healthcare system? All of our focus is on the patient, which is the one that we can’t change, generally the patient, and we ignore the caregiver and the environment.

And when I look at the npiq, so this neuropsychiatric inventory, when we look at the severity, I wonder, how much can we actually change? Like, is the patient impatient or cranky? How important is that to change? Can we change it? Should we change it? Do they have difficulty coping with delays or waiting on planned activities? Does the patient engage in repetitive activities, such as wandering around the house, handling buttons? Has the patient lost or gained weight? Like, how.

Alex 25:50

What about the happiness one?

Eric 25:51

Oh, yeah, there’s one on.

Alex 25:52

Like, are they excessively happy? Is that a problem? Do we need to fix that?

Eric 25:57

And if it’s a problem, whose problem is it?

Alex 26:00

That’s what we do as geriatricians and palliative care docs. We reduce excessive happiness.

Eric 26:05

So how important is the NPIQ to be modifiable? Because when I think about it from a geriatrics and palliative care perspective, like, if they’re wandering, I think about, okay, like, the patient’s wandering. How should I focus on the caregiver or the environment to help with that? Maybe less about the patient. Thoughts on that? I’m going to turn to you, David, first.

David 26:26

Yeah. And I think Helen says a couple things that she alluded to that are really important. Number one, these behavioral symptoms, particularly agitation, aggression, those kinds of things are remarkably difficult to treat. The literature supports that behavioral interventions are best for behavioral symptoms, but sometimes they don’t work. And when we turn to drugs, management of these symptoms, the drugs are lousy, they’re not very effective, they’re dangerous, et cetera.

Eric 27:04

Pretty much across the board.

David 27:06

Yeah. So if I had one wish for the holidays, it would be a drug that really worked for behavioral symptoms. But I don’t anticipate that gift coming. These are very, very difficult to modify.

Eric 27:23

What do you think, Greg?

Greg 27:24

Yeah, I would agree with that. And sometimes what we end up doing for families is helping them manage and cope with those things. And so we even have people who show up, not only in our trials, but in our clinic, where, you know, things are still just as chaotic and just as challenging. But the distress that the caregiver is having may have improved.

Because as David’s study focused on was their self efficacy, you know, their confidence, their ability to just handle these things may improve. So I also think that one of the things that we put in our paper and a subsequent letter was that our NPIQ baseline, we didn’t think it was that high. And it also didn’t change much in either the intervention or the usual care group. So it’s still possible that there are people who weren’t in our study who have much more distress and would have benefited more.

Eric 28:29

So if you enrolled people with higher degrees of distress, maybe.

Greg 28:32

Yeah. Even consider making that an entry criteria, at least for study.

Eric 28:38

Well, I guess another question for you, Greg, is this idea that going back to the secondary outcome, reduced utilization of ED and hospitalizations, that’s a big finding. How much of this is that? This idea that, you know, we probably can’t change much as far as the patient behaviors. Maybe we shouldn’t even be changed. Like, so they’re wandering. Like, make sure it’s safe. Like, make sure they’re like, so they’re excessively euphoric.

Like, okay, let’s talk about the caregiver. Why is that so stressful for you? Like, what bother? What’s bothering you about their apathy? How can we think about that from a caregiver distress standpoint? And maybe we can focus on that distress. With that said, your study didn’t show an improvement in distress, but it didn’t show a worsening distress. So you actually had these people. And this is. We talked.

Alex 29:29

Can I give this story? So you see, there’s a bike behind. That’s my bike, biked in today over Golden Gate Bridge. Beautiful commute to work. I think it was Greg Lamond who said, you work at this, you cycle, you cycle, but it never gets easier. You just go faster. And I think Ken said, for caregivers, they will always work themselves to the point of exhaustion. And if your study allows them to do more, they will do more.

They will do more care at home. If the patient’s not in the hospital, they will always work themselves to exhaustion. So he found it reassuring that they were able to feel like they knew what to do more from David’s study, and they weren’t going to the hospital and the emergency department as much. And there was no without increasing the caregiver distress because they will always work themselves to that point where they are exhausted.

Eric 30:22

And he also brought up this. So we had a podcast with David Kuro talking about dyspnea, and David brought up this fact that it’s really Hard to do a study on dyspnea because what happens similar to what Alex was talking about, people are going to push their function to the point of dyspnea.

So if you improve their dyspnea, they’re going to walk farther and they’re still going to have that 10 out of 10 dyspnea, but it happens maybe 50 yards down the line. So. Thoughts on that, Greg?

Greg 30:50

Yeah, I agree with that. And I think our original draft of the manuscript actually sort of put the notion of how we could see the lack of change in many of these symptoms as a positive outcome, that they were keeping people at home. Nearly more than three quarters of the people in the intervention site didn’t have a single ED visit in the two year study.

Alex 31:16

Wow.

Greg 31:17

Yeah, I mean, they really kept people at home.

Eric 31:19

What was the mortality rate again? Like 40%.

Alex 31:22

40%? Yeah, 40%.

Greg 31:25

So they were able to keep people at home, manage all of these very challenging behaviors and issues and advanced dementia.

Eric 31:33

During a pandemic without worsening distress or depression.

Greg 31:39

Yes, I think that’s remarkable.

Speaker 7 31:42

Yeah.

David 31:43

Yeah. One of one of our site PIs said, you know, what struck him the most about the data is that over a year and a half period of time with the aggression of dementia with COVID with all this other stuff, we didn’t see these precipitous declines. So maybe, you know, holding, holding steady is a good thing. But once again, the, the usual care group was similar.

Eric 32:08

That’s why it’s going to be interesting to see what happens with utilization in your study, David. Are you going to see potentially similar results? Which I guess moves us into what do we do with this data? We have these studies. It seems like we’re still waiting for some more data on your study, David. What does the future look like? How should we be using this data to move us forward and move comprehensive dementia care forward?

David 32:37

Well, big question. A lot of these kind of preliminary data for Guide and I think Guide by and large is on the right.

Eric 32:47

Track and real quick for our listeners. So we did do an episode on guide. We’ll have a link to it. But if you can summarize GUIDE in like one sentence.

David 32:55

Yeah, so GUIDE is a new program. It’s like a eight year demonstration program for fee for service Medicare beneficiaries. That is an alternative payment model. So it gives a monthly per beneficiary payment for managing the dementia care and it does something that Medicare has never done and that is to pay for respite care. It’s the first time they’ve ever done anything for caregivers. So there’s a lot of administrative work to get guide up and running and to deal with the CMS requirements. But it is a new way of thinking about and paying for this kind of care.

So they will evaluate it. It won’t be a clinical trial, but they will evaluate it in many ways, shapes or forms. But the point of the matter is, is that 74 million of US baby boomers are approaching very old age. In 2036, the first of baby boomers is going to be 90 years of age. And by when you reach 90 years of age, your chance of having dementia is about one in three. So there’s going to be this explosion in the number of people with dementia. You know, there’s this old saying, I think it was Mark Twain, but if you think education is expensive, try no education.

Speaker 7 34:33

Yeah.

David 34:34

Try ignorance. And indeed there will be additional updates on these models.

Eric 34:41

I think your study should influence those models.

David 34:45

I think our study shows, I think that the big take home message from our study, and we’ll know more about this when we look at the quality indicators, is that there are many ways to skin a cat and that one of these models is not better than another. They both provided very comparable care. And so it really depends upon the health care system, the kind of resources they have, which model to choose from.

But they’re better off with an established model, particularly one that has some evidence behind it. So they don’t make the same mistakes that Greg and I and many others have made over a number of years and that materials are ready and there’s people who can help you get these things started, et cetera.

Eric 35:29

And you have the trainings and you have the.

David 35:32

Yeah, dementia is not going away, you know.

David 35:36

Even in the best case scenario, the new drugs, et cetera, it’s not reversed. And none of the patients in Greg’s study, and very few of our patients would have been eligible for these drugs.

Alex 35:51

For the mabs.

David 35:52

Yeah.

Eric 35:53

So the amyloid antibodies, they’re not the ones.

Greg 35:57

Yeah. It’s only going to be even able to be used for a very small percentage of patients. There are some studies that put it well under 10%, perhaps under 5%.

Eric 36:10

And people still progress.

Greg 36:12

You’re not stopping them, you’re not eliminating.

Eric 36:15

The disease, progressing just slightly slower if I believe they.

Alex 36:19

And they will progress to the point of being ineligible. The big question is will they be deprescribed the medication or will they continue.

David 36:26

Though they think, oh, they will be deprescribed. In fact, One of the drugs is that if you don’t show clearing of amyloid a year, year and a half later, they won’t pay for the drug anymore. The drugs stopped.

Greg 36:42

But I think that back to what David first was saying about what we learned from these studies, I think it’s easy to pick on the primary outcome, not having been moved in both of them. But if you think about the environment in which our study took place, perhaps one of the other things is that we had enough going on in our environment where the usual care people, three quarters of them who died, ended up enrolled in hospice, and most of those people died at home.

So we may already be, you know, very different than from some places where literally they have nothing. And so David’s point about guide, that Medicare doesn’t pay for education of, you know, caregivers, it doesn’t provide a lot of wraparound supportive services, it’s never paid for respite. And even within managed care, it’s not so easy to get that sort of stuff. So I think that the guide program and our models are moving the field in the right direction, and we just need to figure out what are the things that are the right things for the people at different stages and with different kinds of issues that sort of come and go throughout the course of the illness so that we can tailor the intervention to the dyad.

Eric 38:03

Do you have an idea of costs? Like, we have an idea of what the amyloid antibody costs. I think 25 to $30,000, plus you have to add on per year? Per year, plus you have to add on all the MRIs, PET scans, and other things, probably close to $100,000 per.

Greg 38:19

Year for implementing our program. For 100 people who are in the intervention, it was a nurse, a social worker, and 10% of a document. And our sort of estimates, not using Medicare data, but using things from the literature, suggested that the ED visit and hospital utilization decreases would save something like $900,000, which would more than pay for the intervention. So I think it’s not as Sexy as antibody MRIs and other sorts of stuff, but it’s the sort of thing that what when we.

We haven’t published some of the qualitative data that we have. I mean, the people in the study were really sad when it ended. They had the same person calling them, like, every month for two years and was available to them, like at night and on the weekends or somebody covering for them so that they felt like they got a lot out of it that wasn’t measured by the NPIQ or other metrics we use.

Alex 39:27

So have health systems taken up this program and initiating it on their own?

Greg 39:34

Well, we’ve had one health system specifically come to us to talk about implementing it in managed care to decrease costs. And we have one large insurer that started some conversations with us again targeting their managed care practices. But I think that the guide model is being implemented in hundreds of systems or practices around the country. And I think part of what we want to be able to do with getting out the positive side of what’s been done in these and other studies is that these are things that other people could implement and that they are worthwhile implementing.

Eric 40:16

How important was it the layering of palliative care, though, in your intervention, you think? Was that at large part of the intervention?

Greg 40:24

Well, it was in the sense that we started off with advanced care planning and goals of care conversations for everybody in the intervention side, circled back to it on at least an annual basis. And when there was a major change in clinical status and had lots of discussions not only about should you go to the ER or the hospital, but even sometimes we field questions about does dad really need a colonoscopy, given everything going on?

Or the cardiologist is thinking that he might need a pacemaker and we’d help talk through some of these other kinds of decisions. And that’s not going to be reflected in the npiq, but I think it had an impact on the nature of the care of somebody with very advanced disease and an incurable condition.

Alex 41:13

David, what’s next for your study?

David 41:15

Dk I just wanted to address something you raised earlier about the costs. We actually looked at this in decare for the health system based dementia care, on average, it was about 1980 a year. Okay. Not a month a year.

Eric 41:31

1,980.

David 41:33

Yeah. Per person, per year. And then for the community based dementia care.

Eric 41:38

So like a tenth of the cost of just the drug for like a amyloid antibody.

David 41:44

Yeah, but, you know, I don’t know.

Eric 41:45

That’s probably comparison.

David 41:47

I’m not sure that’s a fair comparison. But the. And for the community based, it was $1,217 a year. So these are not hugely expensive interventions and certainly in line with what we would expect for, you know, shouldering costs for by Medicare. So what, what’s next for us? Well, next for us is a lot more analysis. We’re going to, you know, utilization data should be available by the end of the year. And, and looking at those, you know, certainly I think if it shows any benefits in terms of cost reduction, Medicare would be very interested in that.

But the other thing we’re doing, and we would love to have Greg aboard as well, is that we’re trying to help new guide track participants adopt established dementia care programs and spread dementia care, because to be honest with you, there are 7.2 million Americans who have Alzheimer’s disease alone, and GUIDE is only going to affect 200,000 of them.

Speaker 7 42:57

Yeah.

David 42:59

So that there are institutions that are not participating. Medicare Advantage is an exclusion for guide participants. So there’s a lot of work to be done.

Eric 43:12

Can I ask one other question for both of you? Because we’ve talked about these, some of the negative findings, some of the positive ones. How does this fit in with some of the other research that you’ve both have done? And I think about the CARE ecosystem. So we’ll have a link to that on the show. Notes Kate. How do you say Kate’s last name?

David 43:31

Posein. Posein.

Eric 43:33

And Sarah Delaney on our podcast a while back, and they showed positive improvement in quality of life. I think that was their primary outcome, like a pretty robust finding using these health navigators. How does this fit in with those studies and how should we be putting it all together in these guide models?

Greg 43:52

When we looked at trying to situate the inpiece results, we didn’t yet have the D cares, but we had a table where we were comparing internally these other studies, including Care Ecosystem. I think that it’s not that everybody has to have exactly the same thing. I think that depending on what’s in the environment, in the health system and what kind of dementia care practices is available, that many of these things can be adopted and adapted for use and you know, what fits best for a particular area with their resources and their personnel. So I would say that they all belong in the toolkit.

Speaker 7 44:31

Yeah.

Eric 44:32

Wonderful. Dave, any other thoughts on that before we end?

David 44:36

No. I think that there are at least seven programs that have evidence based, including Care Ecosystem and NPs, Alzheimer’s dementia care, but BRI Care, Consultation, Mind at Home and Integrated Memory Care. And they all have some data to support them and they all have great model developers who have been very generous in trying to help other institutions get something going. Because in the end, people with dementia affect all of us. Every person is touched by dementia. Yeah.

Alex 45:13

Yeah. And also to mention one other podcast that we did early on, that was a prior IU UCLA connection, and that was with Chris Callahan and Lee Jennings, who’s a mentee of David Rubens. She’s now, I think, in Oklahoma. And their podcast title was it’s time for comprehensive dementia care. And I think this is more evidence to that effect.

Eric 45:37

We just got to give it a chance.

Alex 45:39

That’s right. Give it a chance. Here we go. A little bit.

Alex 45:48

(singing)

Eric 46:50

Greg and David, thanks for being on this podcast with us. And you thank you for the great work that you’re doing and that your teams are doing, too.

David 46:58

And thank you for the great work that GeriPal is doing.

Eric 46:59

Thank you, and thank you to all of our listeners for your ongoing support.

This episode is not CME eligible.