Guiding an Improved Dementia Experience (GUIDE) Model: A Podcast with Malaz Boustani and Diane Ty

Eric: Welcome to the GeriPal podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: And Alex, who do we have with us today?

Alex: Today we’re delighted to welcome Malaz Boustani, who is a geriatrician, a neuroscientist, and an implementation scientist, and professor in aging research at Indiana University, and who is a friend from the Beeson Program. We just saw each other in New Mexico last month. Malaz, welcome to the GeriPal podcast.

Malaz: Well, thank you so much, Alex. Now I’m part of the cool club. [laughter]

Alex: And we’re delighted to welcome Diane Ty, who’s senior director of the Milken Institute Center for the Future of Aging, and leads the alliance to improve dementia care. Diane, welcome to the GeriPal podcast.

Diane: Thank you for having me here.

Eric: So we’re going to be talking about comprehensive dementia care, in particular, the GUIDE Model. But before we jump into that subject, we always have a song request. Who has a song request for Alex today?

Alex: I think Diane does.

Eric: Diane?

Diane: Fight Song.

Eric: Can you tell me why you picked this song?

Diane: I think that our fight to really address Alzheimer’s disease and related dementias, that’s one of the more difficult journeys for, not only the person living with dementia, but their family and their family caregivers. It requires a fight. It’s been going on for many decades now. And we’re seeing some hope the first time in a long time.

Malaz: I love it.

Diane: Do you agree with that, Malaz?

Malaz: I love it, Diane. I’ve been on this journey since 1999. And I wish if I had that Fight Song with me, but… Because it was up and down, I needed some booster shots. And this might be the right song for the future fight that we will have to continue overcome.

Diane: That’s right. And there are too many of us who’ve lost loved ones to this disease, including me. My dad. You know? This is my fight.

Malaz: Ironically, my father is currently lived with dementia. And couple of days ago, he lives in Syria, so he doesn’t have the luxury of electricity that you guys have, but he has access to WhatsApp. So my mom called in the middle of the night and we had to go over delirium and stuff. So this is fresh, but they don’t have access to the GUIDE Model. That’s the big problem. So our future is to make it available globally. That’s something-

Eric: We’ll get into the GUIDE Model, but Alex, you want to do a little bit of Fight Song?

Alex: Here’s a little bit of Fight Song. If you’re watching on YouTube, then you get me on piano. If you’re listening to the podcast without video, then you get my wife on piano. She’s much better than I am. Here we go. Little bit of Fight Song.

(Singing).

Malaz: Wow.

Eric: All right. Malaz, I got to go back to you. You said this journey started for you back in what? 1999?

Malaz: 1999, my friend.

Eric: What got you interested in memory care, dementia, and put you on this path?

Malaz: One day I was in internal medicine residency and I had to take care of a patient who was admitted from a nursing home with dementia. And I was terrified. I didn’t know how to manage it. And for whatever reason, I saw myself being in his shoes and I got terrified. The way we were treating him with dementia in the hospital, the way we talked about him, that he’s not there. Every member of the team, even for me, for whatever reason, that switched me from focusing on trying to be in pulmonary critical care to become actually a geriatrician, choose the geriatric fellowship. And it became a terror for me. For me, right now, the worst thing, my nightmare is dying from dementia alone in a nursing home.

Diane: Which too many people do, Malaz. Too many people do because it’s really hard to keep their loved ones at home for the cost, the enormous financial, mental and physical strain for the family. There’s a book called The 36-hour day for dementia caregivers. There’s a reason that’s in… How many prints? It has multiple prints and updates. It’s a very tough journey. So I think anyone who’s lived with a loved one and watched them decline before your eyes, we’re all in this together. I feel like, Malaz, the field that we’re in together and how we met with our alliance to improve dementia care, I feel like everybody, the 100 plus people we have now has a story.

Eric: What’s your story, Diane? How did you get interested in this?

Diane: Well, I think I mentioned early, I lost my father to Alzheimer’s disease about 11 years ago. And at the time, I was working at AARP. And I had three school aged kids and they were young. And I think also being Asian American, how we care for our loved ones, our older adult relatives is very different than maybe Western cultures. I found it to be an incredibly hard journey. I felt like I was one of the lucky ones with a six-figure income. I could walk down the hall and get information. I had a supportive spouse.

I had the tenacity and education to try to figure this out. And it brought me to my knees. And I ended up having to leave full-time work to help care for my dad. And I thought, how is everyone else doing this? We didn’t have… And my mom was a nurse who was there with him, and it was still the hardest journey and very emotional. I still get worked up now. It’s very raw for me. So it’s been a privilege to be given the opportunity to get engaged on specifically the dementia care side of this.

Eric: And looking back at that time, what do you think the healthcare system could have done to help with that? With your journey, with your dad’s journey-

Diane: They could have diagnosed him earlier. They could have diagnosed him earlier. We thought some of the personality changes were due to him taking an early retirement. And kind of knowing that sometimes men in particular, when they lose their sense of identity, might get depressed and all that. But what happened when we finally… When he did get the diagnosis, it all fell into place. It all started to make sense, the outbursts and the closing in and lack of engagement in some of previous hobbies and things like that. But it was also later on in the disease. And yeah, so… I’m sorry.

Malaz: It’s ironic, Diane. I mean, my nightmare… Early on I was thinking like early detection might be good. But then what I saw what happened with people who we recognize, we end up giving them Haldol on everything-

Diane: Yes. Yes.

Malaz: … to restrain them in the hospital.

Diane: That’s what happened.

Malaz: I changed my mind, like maybe early detection for unprepared bad system might not be good idea. So I thought… And I was doing this for the United States Preventive Services Task Force because we were looking at the evidence to what’s the benefit and harm of screening, and I had to look all over. And I noticed that kind of problem that automatically when you recognize person with dementia in the system, you get the… I call them the four D. They lose their dignity. People don’t include them in the conversation anymore. They lose their dependence. People start thinking about putting them in a nursing home. They get depressed and their family get depressed. And finally, they think of themself as crazy. They treat them differently.

So I thought maybe the best way that I have to make sure transform the dementia care program first and then bring people into it. And that’s where, based on this, I made a decision to leave University of North Carolina to come to Indiana University because my mentor, Chris Callahan, just received the grant from AHRQ to build the first randomized clinical control trial that evaluated the comprehensive dementia care model. And I thought, “Ah, it would be awesome to go there.”

Diane: Fantastic. Malaz, we interviewed Chris for our Guiding the Dementia Care Journey.

Malaz: Oh, here we go.

Diane: With the report that we released, he was… I didn’t realize he was your mentor. He was fantastic.

Alex: Chris is great.

Diane: Fantastic.

Alex: We had him on a podcast about, it’s time for comprehensive dementia care. And he was quite forceful. [laughter]

Eric: That was back in 2020. And the argument at that time is, “Hey, we have tons of great evidence that comprehensive dementia care works.” We had other podcasts too. So we had Care Ecosystem.

Diane: Great. Care Ecosystem.

Eric: We had a podcast on Care Ecosystem, another evidence-based model for dementia care. We have all of these models that are out there that have proven benefits for patients, for caregivers, and some of them for healthcare systems as far as saving money for, let’s say, Medicare. Why do we need to do more? We have models that are out there that are showing the work. I guess we actually are… They’re few and far between as far as access to them-

Diane: Payment. This is the payment model for those six evidence-based care models that you’ve… You mentioned UCLA, Care Ecosystem. There’s the Eskenazi one at Indiana, Benjamin Rose. And like you said, there are these evidence-based. What we didn’t have was the payment model to deliver the comprehensive dementia care. That’s what Malaz is going to talk about.

Malaz: Yeah. I think the big one for me, it was in 2015. You know? 2015, 2016. UCLA finished the CMMI funded grant. We finished funding, we finished executing the ABC at IU grant. UCSF and Ecosystem were one year after us. So they were still have one or two more years with them. And the MIND at Home at Hopkins. And we were in the field. So IU, we have been able to convert our paper, Chris Callahan paper that was published in 2006, the first clinical trial that was positive. Within two years we converted to clinical program serving in a safety net healthcare system, 50% African-American, 6% dual eligible.

And we thought… I was thinking like that’s it. UCLA is there, we’re going to spread. And then 2016 after CMMI finished the evaluation, it looked good, nothing happened. So I remember talking with David Reuben and others and say, all right, we need to be a doctor and diagnose exactly the question you ask, Eric. Why? And we find out, oh, there is no demand. That’s what it is. And I remember, yeah, there’s so many-

Eric: And when you say no demand, do you mean no demand from patients and family members?

Malaz: No. Everything. So technically, demand from a customer who has power, right? As you know the healthcare system right now, we struggle. There’s a huge gap between the consumer of healthcare and the customer of healthcare. They’re not the same. So for me, demand is coming over from the customer who ideally who will receive the care and value it and pay for it. But in the healthcare system, they are not the same. So there is no demand from the customer. Wherever you define that customer, a person who will pay for it, there’s no demand even on top of it. So there’s demand problem.

But the other problem, which I think the driving force for even lack of demand, is there’s a huge stigma. So if you think about dementia, it’s on the intersection of aging stigma and mental health stigma. You get double whammy.

Diane: Yeah. That’s true.

Malaz: You know? So that’s I think diagnoses. And when we made that with David and other, we talk with Jürgen Unützer. And if you don’t know Jürgen, Jürgen took care of the depression model. He created fee for service, special fee for depression. And I talked with Jürgen. And Jürgen said, “Don’t do it like that. It didn’t help. Think about CPC+. Think about different payment model.”

And that’s where David and I wrote the alternative payment model that used per member per month. And then we said, “We’re not an advocate. We never done anything. We never brought anything to the market. We’re just good at grant writing and application [inaudible 00:14:59]. That’s what we’re good at.” So we thought we have to really build a village and team up with amazing people like Diane and Milken Institute who know how you can leverage need, how you can empower people, how you can fight, like you said, like her song, to actually create demand.

And that’s where Milken came over, the Hartford, the Alzheimer Association-

Diane: Alzheimer’s-

Malaz: … AARP, and the alliance that Diane set up with. Every time we kept talking, talking, and meeting, and meeting. And we were so close, if you remember, Diane, before the COVID that CMMI was closed, but then COVID came over and slowed down, and then 2023 finally …

… CMMI to get the alternative payment model that will give you the payment that will create demand for delivering the evidence-based comprehensive dementia care model that had been replicated, not just in the US by the way, it’s been replicated in Germany with the same results. So that’s the story, that’s the success. But it is just the beginning in my opinion.

Diane: Right. And Malaz, I think too, we also had leadership at CMMI who-

Malaz: Yeah, amazing.

Diane: And Liz Fowler, who was really-

Malaz: Yes. Yes.

Diane: … to the voices of the advocates and realizing we really need to do something in dementia care. And yeah, and the John A. Hartford Foundation. So a lot of these pieces that flowed, but it really did emanate from the fact that you, David Reuben, Kate Posin, the Benjamin Rose folks, MIND at Home, Emory all had these models. And there were publications and papers. And then we saw our role as elevating, amplifying, creating more groundswell noise and showing how important this is.

Malaz: Well, Diane, I think you are being very, very humbled. Most of us as a scientist, we think you can fix problem by just creating a solution that has a big effect size and statistically significant. But we know to fix problem is all about distribution, implementing market demand. And that is this experience that you have. I remember you guys telling us about simple message, guys, talking communication. Know the persona, the story. We’re like, “What? Story? Why do we need a story?” You know?

Diane: Yeah. But also there’s also, because many more people… Oftentimes, when I’ll be at a meeting, if I’m presenting, I’ll ask for show of hands how many people have had experience with dementia. The hand goes up. It’s like 90. Over 90% of the room. And I also think this is true for our policymakers. When you experience this diseased journey, you’re like, “Oh my gosh, oh my gosh, this is…” You know? So a lot of win-wins here. We are just getting started too.

Eric: So what is GUIDE?

Malaz: Yeah, it’s very easy. It’s an alternative payment model, right? It’s a different way-

Eric: Usually my mind shuts off when I hear alternative payment model, but I’m going to try to stick with this one.

Malaz: Let me tell you.

Eric: Because it’s always very confusing.

Malaz: It’s just payments. How is that? It’s a payment that is not the way… It’s a very different payment-

Diane: Very different.

Malaz: … we pay right now for service. Right now, the pay per service. You come over to the clinic, you go to the hospital, you provide service, and the insurance and you negotiate how much you’re going to get paid. Right? And that’s mean you have to come over to my clinic, I have to see you, and I have to make sure you give me enough payment to take care of you. So what that means is I take care of you just in my clinic, just in my hospital. Outside the clinic, outside the hospital, I’m not getting paid, therefore I’m not going to provide services.

Eric: So comprehensive dementia care is not really feasible in this model because-

Malaz: It’s not.

Eric: … you’re getting paid for individual encounters, not going to people’s homes, not being paid for all of the additional support that’s needed for comprehensive cancer care.

Malaz: Correct.

Eric: However, if we had a drug that works marginally, we’d be willing to spend $50 billion for, but not for evidence-based comprehensive-

Alex: Aducanumab, Lecanemab, Donanemab.

Eric: … Comprehensive Aducanumab

Malaz: Yep. Welcome. We do the same thing for Hepatitis C. And we do thing for transplant. We do things… I mean, this is very common as you know.

Eric: So we’ll do drugs like that for any of these diseases, even if the efficacy is marginal to none. But for other-

Diane: And it’s on the medical side. Whereas with comprehensive dementia care, what you really need is a lot of the support that is delivered in the community. So I think what’s really exciting is that these community-based organizations, some of those groups that provide training, transportation, respite care, all of that was never included. And that’s a big part of this new model.

Eric: Okay. Let’s go on. So this is not the old model. This is a new model.

Malaz: Payment model.

Eric: Payment model. And what does that look like?

Malaz: So it’s paid beautifully for the following. Number one, it give me as a, let’s say for us as a comprehensive dementia care provider, it give me a lot of freedom of how I can allocate that money. I will get paid a flat fee, a little bit of flat, like there’s tiers, every month I will get certain payments. So somewhere between $200 to $300. Right? And then I can do whatever I want for that $200, $300 payment to distribute adequately to allow me to provide the comprehensive dementia care model.

So in the comprehensive dementia care model, who are the most important one? They’re not the physician like Diane said.

Diane: Yeah.

Malaz: They are something we call care navigator. And these care navigator, they can be community health worker with just 12 years of education. They can be nurse if you want to. They can be advanced nurse practitioner. They can be a-

Diane: Social worker.

Malaz: Social worker, anybody. Correct? So a dozen state, they have to be trained obviously, and they have to be able to provide the comprehensive dementia care model. That’s one big thing. The second one, in the comprehensive dementia care model, you’re not dealing with the person who live with dementia, the care recipient. You are dealing also with the unseen hero. That’s the family care partner, caregiver. And this payment allow me to pay for service to support them. You know?

Diane: Huge. Huge.

Malaz: To support the caregiver. That never happens in CMS and other health insurance. This money allow me to take care of the caregiver, educate them, support them. And guess what? Provide respite care for them. For $2,500 per member per year, I can send and pay for somebody to go for four hours and block into their home, take care of their loved one while they are on break. I can pay for a daycare. Like, their loved one can move to a-

Diane: Adult community…

Malaz: … for a half day or an eight-hour day to adult daycare. I can even go and pay for two days overnight stay at the nursing home while get they get respites. You know? That’s paid for by the model. That never happened before.

Diane: Huge. Yeah.

Malaz: And the beauty about this payment model, it’s also give me extra money for two things. If my patients and family have significant social frailty, it will adjust for that. It will adjust for the using, as you’re familiar, the deprivation index. You know? Where they live. It will give me more. Ut will incentivize me to work harder and reach out to these people. That’s for us at Eskenazi, which is safety net, was a huge.

Diane: Huge. Yeah.

Malaz: Huge because most of our patients are Medicare, Medicaid. So very, very socially frail. And the second thing will give me extra money if I keep them at home and I provide a good quality of care for them. That’s additional up to 15% more.

Eric: How do you measure that?

Malaz: They have set up, at least they have five measures. Three of them are beautiful set up already. They are working on it. Number one, number of days you are in the community. So how long can you keep the patient at home, if the patients and family want? Right? And we have to actually co-design the goal of care with the patient and family, we have to write them down, we have to put the patient family first. We have to demonstrate we can do that. Otherwise, we will be kicked out of the program or the payment. So that’s very important one. The typical utilization of inappropriate hospitalization and emergency room and total cost of care.

And guess what? You’ve been talking about drug that don’t work. We will get paid if we deprescribed bad drugs for them. You know? Not the quality of care. But that one is also included. And there’s finally they are working on this. They’re going to also, part of the quality of life is an outcome measure, which is the quality of life of the patients and the caregivers.

Diane: And the caregiver.

Malaz: And the caregiver.

Diane: Huge.

Malaz: Amazing.

Alex: Great.

Diane: Yeah. One thing is, as I’m listening, and because we’ve talked about the six evidence-based models. So those are care models. The GUIDE Model is the payment model-

Malaz: Payment.

Diane: … for the care. So that’s a really important distinction. I also wanted to add… And Malaz beautifully described the GUIDE Model, the payment model and all the aspects. The other thing that I think is really interesting of what CMMI did is you get paid a different level depending on the stage of the disease because we know it’s progressive. You’re going to get a little less in the beginning, kind of that low all the way up to severe. And then there’s a difference in payment if you have an identified caregiver and if you don’t. So again, there’s that protection of somebody. We know there are older adults living alone with dementia without a caregiver. And to me, that sounds like… How does that work? The model recognizes that and we’ll either find a caregiver or at least pay extra and check in on that person more frequently.

Eric: Does it apply just to folks living in the community or assisted nursing homes?

Malaz: Yeah. So there’s a couple of excluded caveats…

Diane: Yeah. Caveats. Yeah.

Malaz: Number one, you cannot be a Medicare who is part of Medicare Advantage because technically Medicare Advantage have to do that. If they’re smart enough they will do it. So that’s one. You cannot be in hospice. And you cannot be in a nursing home. Not the skilled. The intermediary care. So you can go to skilled facility for short rehab-

But if you are permanently living in a nursing home. But if you’re in assisted living, yes. If you are independent living, yes.

Eric: So as long as Medicare is not paying for the… Or Medicaid, I guess, for nursing. Long-term care.

Malaz: Yeah. For the long term. Yeah.

Diane: Also PACE is… If you’re in part of –

Malaz: Yeah. And PACE-

Eric: Because PACE should be paying for it.

Diane: Yeah.

Malaz: Yeah. Paid. Just to let you know, Eric, we have to give the credit to our federal government. Honestly. There’s two things. Number one, CMMI actually, by their title of their name innovation, they did innovate.

Diane: Innovate. Yes.

Malaz: That’s really good. And they were so amazing. They took the leverage of President Biden executive order that happened in April, which forced, kind of encouraged taking care of the caregiver. They took that and hijack, not hijack, but leverage it to really deliver this alternative payment.

Eric: So if this is CMMI, does that mean this is like a trial?

Malaz: Eight years trial. Can you imagine?

Diane: Eight-year.

Malaz: Eight years trial. Eight years trial. And which is true. Eight year to make it permanent because this is additional-

Diane: Yes. Longitudinal, right? You’ve got to look at results over time because it is a progressive disease.

Eric: So does that also mean is that… Who gets to participate as far as… Let’s say I have a program here at I want to be part of this alternative payment model. How do I join and what’s the requirements?

Malaz: It’s a little bit, unfortunately, you have to know this very quickly because you have only one shot at getting approved. And that shot is January 30th. So if you can share this early, January 30th, 2024, you can apply as two things, as an established program like us, UCLA, UCSF, or a new program. All right? And then you have an application. It’s not rocket science. I looked at it. We already created first draft. It’s not much.

In that application, you have to demonstrate that you are able to build the team to care for in and around it, you are able to provide the nine component of the comprehensive dementia care model, they set it up exactly how to do it, you’re able to provide the data that you need to track that system, and you need to be able to figure out how you can partner with community-based organization to provide the respite service and other things. And you can do it in any way you want within that constraint.

And then they will obviously audit you later on, check all your assumption, make sure you are not frauding the process. But literally, anybody who can do these things, they can do it. So if you are established program, the starting point is July 30th, 2024. All right? So since 2008, we’ve been providing the service using our foundation money. So starting July 31st, 2024, we’ll be able to get, and there, I mean, we’re going to have to expand our service.

Right now we are tight budget. We’ve been providing this just the 200, 250 dyads in Indiana, and there’s a hundred thousand people in Indiana who need it. You know?

Alex: They need it. Yeah.

Malaz: So hopefully in July we’ll be able to expand, not just us. But I know other healthcare system in Indiana, they can apply for the new program. They have one year to set it up. And they can start July of 2025. Purely architected. Hopefully things will work out well and we’ll see what will happen. And hopefully will become a permanent benefit.

Alex: Hopefully. Yeah.

Diane: But the new models are a year later-

Malaz: Yeah.

Alex: Are a year later. So the idea is that there’s a one-time to get in and then the model will be evaluated over eight years, and then hopefully it will become a more permanent payment model within Medicare.

Malaz: Correct.

Alex: And I just wanted to highlight a few other things that we’ve run over. One, this is one of the, maybe the first model, maybe other than hospice, that provides supportive services for caregivers-

Malaz: Correct.

Alex: … payment through Medicare, which is just a remarkable achievement in and of itself. And that’s terrific.

Diane: It is. It is.

Alex: The second feature is that this is distinguished from PACE in that for PACE programs of all-inclusive care for the elderly, you have to be dual Medicare and Medicaid eligible. And those people have a higher, not just dementia, but other multiple chronic conditions. In this, it’s really focused on dementia. Is it any stage of dementia? Could you have mild dementia?

Malaz: Yeah. Mild, moderate, and severe, with or without caregiver, like Diane said. It will not include people with mild cognitive impairment, which is not dementia. But you have to have dementia.

Diane: Right.

Alex: You have to have dementia. Okay.

Malaz: You have to have functional disability.

Alex: Any form of dementia-

Malaz: Any form.

Alex: Any form. And what about… So there are all these new drugs we kind of hinted at it earlier coming out. Let’s say a patient decides that they want to try one of these, like Donanemab or Lecanemab. Does that prevent them from enrolling in the GUIDE Model?

Malaz: If they have dementia, if they have mild dementia, mild Alzheimer’s disease related dementia, and then they… No. That doesn’t prevent. As a matter of fact, for us in Eskenazi, we have leveraged these two breakthrough. I know Eric doesn’t think about the other one, but different things. These three breakthrough, the dementia care model, the disease modifying agent, and then the old breakthrough that is four or five years old, which is lifestyle change that can prevent your risk of developing dementia by a third, which is like, well… We are building a business case to create a more comprehensive wraparound services.

So if you are at risk for developing dementia, you come over, we have care coach to help you with lifestyle change. If you got unlucky and you developed dementia, but it was part of Alzheimer’s disease, we can give you that Lecanemab to maybe slow it down. If you got very unlucky and unfortunately you went to dementia, we’re not going to forget about you. We’re going to actually be with you for eight years where the comprehensive dementia came out if you want to stay at home, which very rarely I haven’t found any of my patient say, “Please, please, please. I want-

Diane: To be in a nursing home.

Malaz: I haven’t found anybody, but you never know.

Diane: Yeah. No, it’s really very exciting. I think the other really terrific innovation and focus is CMMI’s very intentional work and advancing health equity, recognizing that we really have a disproportionate risk for people of Black American, Black Hispanics’ disproportionate risk for dementia. And so, Malaz, correct me if I’m wrong, but there’s definitely a focus there in terms of potentially extra funds to the monthly payment with the social determinants and all.

Malaz: Yeah, social determinants of health. So by default, these underserved population-

Diane: Underserved population.

Malaz: … they have a prominent social determinant of health negativity. So there will be adjustment for your social determinant health, your deprivation index. And they will also, this is the West Coast, this is just for California, they will be adjustment for cost of living kind of thing. Like Midwest, for example, we know we’re cheap. Come over, here you go. But if you’re in San Francisco… So they will adjust the payment. They will adjust the payment. They will take into account where you live. So social determinant of health and your geographic location will adjust the payment positively for your case.

Eric: So I got a question. So just remembering back to all the different comprehensive care models, I think you alluded to this in the beginning, they’re staffed a little bit differently like the… There’s the navigator, but who is doing the navigation? Depends. I think Care Ecosystem, it was the navigator patient dyad with a family member, but there was also a social worker, nurse and pharmacist that was part of this team. Some of these models I think include more medication management, some of them don’t. How does GUIDE make all of those models more standardized so they’re addressing similar things or does it?

Malaz: Well, it’s beautiful. So number one, you are in UCSF. You are in coast where software and Silicon Valley has done that. So as you know in Silicon Valley and software development, they do agile software development or agile problem solving. In that case, they don’t do standardization everything. You know? They do what we call it minimally viable standard. [inaudible 00:36:17]-

Diane: MVP.

Malaz: The MVP. So the MVP for the GUIDE Model allow me to personalize. The MVP for them is care navigator, medical director, or a clinician who could be advanced care practice PA or a physician who have one of three factor. Number one has experienced at least 25% of its population are 65 and older or have dementia. And there’s another factor. So that’s the minimally viable components in particular. And then they have to provide the nine elements of the… They have to provide psychosocial support, education, respite care, care transition, and-

Diane: Medication management.

Malaz: … they have to do medication management. And they have to do comprehensive assessment in the beginning and seek the caregiver and the patient’s preferences and things like that. So there’s nine component. How to do it? They allow you for context. So just whatever work in San Francisco, I can tell you 150,000% is not going to work in Annapolis. [laughter]

Eric: And is there guidance from CMMI? Like, oh, I’m struggling with this aspect. Like people that you can turn to if you want to-

Malaz: They promised. I don’t know yet, but they promised they’re going to have another RFA for people to provide technical assistance to help them out. However, the John A. Hartford Foundation did not wait and they just approved funding for the existing program that will be able to offer free support to any new program they wanted training and everything else. So the six model that Diane mentioned, now I think all of us are part of the John A. Hartford Foundation-

Diane: Great. Terrific.

Malaz: … that will provide support. And I know the Alzheimer Association, they developing round table or something. And I bet Milken Institute going to do something similar.

Alex: I’m sure Archstone Foundation as well. Actually Chris Langston, president and CEO of Archstone was the one who said-

Malaz: There you go.

Alex: “Eric, Alex, you should do a podcast on the GUIDE Model. Invite Malaz and Diane.” So thank you, Chris, for that suggestion. Diane, I want to ask you a question. What does it take to get something like this approved? What did the Milken Institute help do?

Malaz: Magic. Share with the magic.

Diane: No, no. I feel like we just rest on the shoulders of the giants like Malaz, David Reuben, who are these incredible clinicians, geriatricians who have been on the ground floor for the 20, 30 years, and who have come up with these solutions, who then come up with the evidence base that is needed for CMMI to actually make the decision to test this incredible alternative payment model.

I want to credit too the Alzheimer’s Association who commissioned Healthsperien, an economic analysis firm who looked at the cost savings was billions of dollars if a guide model or alternative payment model could be implemented. Our job is to elevate this. So we came out with a report in March of 2023, followed it on the heels of a report that we had done in November, 2022. We did a report on scaling comprehensive dementia care. We looked at the eight now nine core elements of these six models, again elevating it. We present it to CMMI, to CMS, whoever will listen to us, people on The Hill.

The one we did this past March was called Guiding the Care Journey. Our alliance is governed by a steering committee and we go to them and say what are the areas? And it kept coming back. Workforce, workforce, early detection. We did 40 key opinion leader interviews on what workforce. And what’s so obvious, and I’m going to credit Debra Cherry who planted the seed from Alzheimer’s LA, care navigation is the… Of those eight core elements, what’s the most game-changing one that we can highlight? You know? If you have a care navigator, you’re going to end up supporting the caregiver, you’re going to end up doing better job at medication management, care planning delivery. We actually, I think, thought are all these eight equal or is there one that really stands out? And for us it was the care navigator.

We wrote an entire report on the importance of this role. And we showed it within the telephonic setting, home setting, community setting, and the clinical setting because all six of these models are in different care settings. To Malaz’ point, what works in California versus what works in Indiana, very different based on geography, availability, population that’s being served. Our job was to take all this good work and put it into a report, publish it, release it, use our social media platform, and then our ability to get meetings with CMMI and share these consensus-based recommendations.

So again, we’re taking what’s out there. And then I think what’s really important is we take a cross section of folks working in the dementia care space, all the geriatricians, but also the health system, the philanthropists, the people living with dementia will do a round table, and we then take that information, synthesize it, and come up with these what we call consensus based recommendations. That’s what got put into our report. And then-

Malaz: And Diane, can you tell the alliance though? I think the other crucial one is you build the alliance.

Diane: Yes, we built the alliance.

Malaz: And you have time and space for it. Can you explain how did you build the alliance?

Diane: Yeah, we built the alliance recognizing that a lot of investment was going onto the cure side. Right? All these drugs and all the cure for Alzheimer’s. Meanwhile, over 7 million people living with dementia on this very fragmented journey. So the idea was we need to actually create an intentional focus on the dementia care side. And we defined that as earlier detection and timely detection diagnosis to evaluation, care planning delivery, all the way to end of life. And then within those three areas, focus on health equity, building workforce and systems capacity, and scaling comprehensive dementia care models.

And it was within those, I would say it was those last all three crossing over that allowed us to then recruit and kind of word of mouth. We have over a hundred. We started out three years ago, July, 2020 when this launched, about 40 people and eight sponsors. We’re now up to over 130 members. I just added one yesterday. Another incredible neuropsychologist working in Alabama. And we have 18 steering committee members. So I think our work, we were filling a gap in this space to then use the platform of the Milken Institute to be able to create these reports and elevate and amplify the needs of the field. [inaudible 00:43:49]-

Eric: So I guess one question is, as you think about the future now, so I mean, it must’ve taken a tremendous amount of work to get to this point, to have seen might do this. But I imagine the next eight years is also going to be a tremendous amount of work.

Diane: Yeah.

Eric: Because you got eight years to show from, what, July 2024, eight years to show that this model works, right?

Malaz: It saved money. I mean, it works. The payment model. So again-

Eric: Yeah. It works for Medicare as far as not costing them a lot of money and working on those quality of life outcomes, patients and families-

Diane: Caregivers.

Eric: What keeps you up at night thinking about the next eight years?

Malaz: Well, I can tell you my nightmare after we got this one is the evaluation part that is very, very immature done by people who don’t understand dementia, don’t understand the system. And as you know, CMS can outsource that to a third party. Good reason. But I’m worried that the people like Mathematica, RTI, whatever, the usual, they don’t understand dementia. Number one, it’s a dyad. Right? That’s just that simple thing of a caregiver. Alex, you take it for granted. It’s so obvious, but that’s the big one. It’s a eight years journey minimum. There will be in and out of delirium and there will be adjustment like crazy. And there was sensitivity to context and preference like family member and other stuff. So trying to pick up signal and noise in that scope is scientifically is not a walk in the park. Yeah.

Diane: Yeah. Yeah.

Alex: What keeps you up at night, Diane?

Diane: I think similarly. Eight years is a long time. And I don’t think this is the first. I remember when we first talked to CMMI had some representatives at one of our round tables. There’ve been tens of tens and dozens and dozens of models. But I think at that time, maybe four had actually gone through from pilot stage to actually becoming a standard care of payment.

So the hope is at the end of the eight years, as Malaz said, this becomes the standard. There’s a lot that can happen in those eight years. I wasn’t aware, Malaz, of your concern in terms of do the evaluators have the dementia expertise. Now I’m going to start having nightmares. But also, I’m excited too. You know? One of the, if there is a criticism, is that the comprehensive dementia care models that were really emanated out of academic centers, research centers. We’ve named UCLA, UCSF, Emory University, Johns Hopkins.

Malaz: Don’t forget Midwest. Don’t forget the Midwest. You always forget the Midwest. [laughter]

Diane: Indiana. Indiana. Oh yeah, the top one…

Malaz: East Coast and West Coast. I have a chip on my shoulder. Eric knows it.

Diane: No, no. Indiana. Major leader with you and Chris Callahan. So there’s such a commitment with this new program track because they really listened to that. Like, well, this is a health equity issue. This is an access issue. And so this new program track is being created, it’s coming out a year later than the established models, and it’s giving them a whole year to set themselves up and to create the really critical community based partnerships that maybe not exist right now.

What I think is really interesting too is that the program is giving what they call the safety net providers. They’re eligible to receive an infrastructure, a one-time infrastructure payment of $75,000 to cover some of these upfront costs of developing these in this whole pre-implementation period. That’s awesome. What does that look like? The devil’s in the details. Will they be able to actually set up these partnerships if they don’t exist, particularly in some of the rural areas? So the design is fantastic. It’s then the implementation and what does that look like. I don’t know, Malaz, if that’s something that you would-

Malaz: I think the other nightmare is you build it and no one come because other other-

Diane: The stigma.

Malaz: Yeah, misunderstood. Then I can tell already ironically, the academic health centers. So a lot of them they say, “Oh, there’s not enough money.” What happened with your mission? You know? This is supposed to be your mission oriented. But anyway.

Eric: Well, I guess the other question, this is something that we struggle with a lot, like in palliative care. What if really good care costs more? I think, for example, palliative care has grew up, luckily that it actually costs less. But what if doing this over eight years, we actually see that it costs Medicare more? Which I doubt it will. But if it does, it bring up this interesting dilemma that, oh, this has all these positive benefits. Again, we’re willing to pay billions of dollars for other things that may have marginal benefit. But here, comprehensive cancer center just makes sense. Or comprehensive… Not cancer center. Comprehensive memory care just makes sense.

Malaz: I think you’re raising big issue in the law itself. There’s two standards for payment, a drug procedure and model of care. For the drug and procedure, there is no burden of saving money. Right? For this one, there is no burden of saving money. They want neutral. So just to let you know, they can break neutral if we improve the quality of life. It’s not saving over time. But yeah, that’s a big factor. That’s a big factor indeed.

Eric: Well, I want to thank both of you for being on this podcast and be mindful of time. Maybe we can get a little bit more of a cheer me up with Fight Song, Alex.

Alex doing it with one hand.

Alex: One hand. Yeah.

Eric: I guess one hand plus one finger.

Alex: Yeah, those of you watching on YouTube, I have six fingers for the Fight Song.

I’m still in a cast, another four weeks, no guitar. All right. Here’s a little bit.

(Singing).

Malaz: Wow. Beautiful.

Diane: Thank you.

Malaz: Thank you. Thank you. Thank you.

Alex: Uh-oh. Eric, I think you’re muted. You’re saying, “Thank you very much and thank you to our listeners.”

Eric: For those who don’t know, I was on mute. I don’t don’t know how many podcasts I have to do via Zoom to realize I should unmute myself when I’m talking. [laughter] Thank you, Diane. Thank you, Malaz. Exactly what Alex said. Amazing job pushing this forward too.

Malaz: Thank you.

Diane: Thank you.

Eric: Looking forward to 2032 when we’ll have you back on talking about the outcomes.

Diane: How’d it go? [laughter]

Alex: Before then. Yes. [laughter]

Eric: And thank you to all of our listeners for your continued support.