The Game-Changing GUIDE to Dementia Care with NHPCO's Rory Farrand

What if there was a way to drastically shift the field of dementia care towards more efficient care coordination and equitable health access? This episode features a conversation with Rory Farrand, Vice President for Palliative and Advanced Care at NHPCO, who unpacks the recently released Dementia GUIDE Model by CMS. Listen in as Rory explains the potential this model holds for not just caregivers but also for healthcare-at-home providers.

In an engaging and enlightening discussion, Rory highlights the model's focus on reducing fragmentation, building health equity, and the unique incentive it offers for programs to ensure full community representation. She emphasizes how organizations, even those lacking all the model's components, can still participate, fostering partnerships within their communities to provide required services. If your practice revolves around dementia care or if you're simply a caregiver seeking to enhance the quality of life for your loved ones, this episode offers valuable insights into a game-changing approach that could significantly benefit you. Tune in and consider how you can apply it to your unique circumstances.

𝐂𝐇𝐀𝐏 𝐃𝐞𝐦𝐞𝐧𝐭𝐢𝐚 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐏𝐫𝐨𝐠𝐫𝐚𝐦 𝐂𝐞𝐫𝐭𝐢𝐟𝐢𝐜𝐚𝐭𝐢𝐨𝐧 is a beacon for providers to ensure optimal care. Experience the 𝐬𝐲𝐧𝐞𝐫𝐠𝐲 𝐨𝐟 𝐛𝐨𝐭𝐡 𝐭𝐡𝐞 𝐆𝐔𝐈𝐃𝐄 𝐌𝐨𝐝𝐞𝐥 𝐚𝐧𝐝 𝐂𝐇𝐀𝐏 𝐏𝐫𝐨𝐠𝐫𝐚𝐦, collaboratively framing a comprehensive care strategy. ⁣

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Transcript

Jennifer : 0:09

Greetings. I'm Jennifer Kennedy, the lead for quality at CHAP, and welcome to this month's CHAPcast. We're talking about the topic of dementia, bringing a background to specifically talk about the nuts and bolts of the dementia guide model with expert Rory Farron from NHPCO. Welcome to the podcast, rory. Thanks Jennifer.

Rory: 0:33

I'm really happy to be able to speak to you today.

Jennifer : 0:35

Well, Rory, I know you and I know that you're an expert in your field of palliative and hospice care, but could you do a brief introduction for our listeners and tell them a little bit about yourself?

Rory: 0:48

I'd be happy to do that. I am the vice president for palliative and advanced care at NHPCO, and by background and training I'm a clinician. So the majority of my career I've been a nurse practitioner practicing in long-term care, geriatric space, and, of course, when you're working with folks that are older, you tend to sort of fall naturally into palliative care, and so that's partly how I got interested in doing dementia, working in dementia care. But the reality is I love it because I grew up with a grandfather who had Alzheimer's disease and my first job out of grad school was working in memory care units, so this is a topic that is near and dear to my heart.

Jennifer : 1:31

So you're the perfect person for us to really take a good look at what this model is. I actually, when it came out, I'm on the email list at CMS and I saw this model pop out and I was really interested and excited when I read some of the content of how it's going to work and who's going to be eligible upstream to participate in this demonstration model. So I know that you, in your expertise of palliative care, probably looked at it and said, hey, this might be a good thing. Can you talk a little bit about your initial reaction to what the guide model looks like and what your thoughts are about it?

Rory: 2:18

I can definitely do that.

Rory: 2:19

Guide is an acronym for guiding an improved dementia experience and, as you mentioned, it's one of the newest models that CMMI or the Center for the Medication Arm for CMS just launched, and what's really exciting about it is that it's one of the first models that is really addressing the challenges that caregivers have when caring for a loved one, and in this case their focus is on dementia and illnesses in that sphere.

Rory: 2:49

But so it's really really exciting for a number of reasons and, like you said, taking a look at this model from the palliative lens, it's just truly exciting that the focus is a lot on care coordination and management, caregiver support and education and then respite services. So respite is most commonly seen in the hospice benefit and this is the first time that we are going to be able to see it in an upstream model of care. The goal of the model is really just to improve quality of life for folks living with dementia and their caregivers, and CMS is really hoping to see that there will be a delay in long-term nursing home placement so folks can age at home, live at home throughout the end of their life, and one of the unique aspects of this model is that there will be a standardized approach that's really hoping will transform care of people who have dementia.

Jennifer : 3:49

Some of the things that popped out when I read the description of the model were words like interdisciplinary and coordination and individualized plan of care, all of and, of course, respite. You did mention that All of these words are something I know from my longtime hospice nurse history and it seems to me, like CMS said oh, these things are good and we can pull them from the Medicare hospice benefit and try to embed some of those items that make personalized or person-centered care into the model in other places in CMS, what are your thoughts on some of those aspects of the model?

Rory: 4:34

I would 100% agree with what you just said, jennifer. In fact, take it a step further. The National Consensus Project Quality Guidelines for Politive Care actually uses the word domains, and so when you look at what CMS, cmmi, is hoping to test within this model, they also use the word domain, and that was just. Maybe it was a coincidence or maybe they were a little influenced by palliative care, but I thought that was really. I really I just sort of found some sort of synergy there. So, as you mentioned, when you read what those domains are, that is 100% what palliative care is and does and, of course, what hospice does.

Rory: 5:11

Just to a point of fact, hospice beneficiaries, folks who are actually enrolled in the hospice model, will be excluded from this demonstration, right, but a hospice organization that has perhaps a palliative care line of business or the home health agency that has a palliative care line of business, those folks would be able to participate, and what's wonderful about this is that this is focused on keeping people in the home, and who's better at keeping people in the home than folks that are experienced in working in palliative care and in home health? We are really good at the comprehensive assessment piece, designing care plans, making sure that we are focusing on what people need and not as much on prognosis. And, as you mentioned, there's a lot of focus on care coordination and management and support for caregivers. So all of those things are what we are really good at doing in palliative care. So I think that this model is really in the right swim lane for palliative care providers.

Jennifer : 6:13

Yeah, it really is, and you know, as you mentioned, it's targeted for upstreet. So someone gets that diagnosis, you know, whenever, whatever age they are, and they get it. It seems to me like CMS is invested in focusing let's, let's put some resources towards when this person is starting to decline and you know they're in that trajectory, rather than, oh my gosh, you know they're getting towards the end of their life and what do we do with them? So raising all quality boats is is one of the goals here. Also, cost savings. We know that CMMI is always focused on cost savings and it seems to me by developing something that's more upstream would help do that. And where I'm going with this worry is, you know, there was a recent research that came out specifically about hospice and dementia and you know that there's actually cost savings there. So what are your thoughts on that?

Rory: 7:20

Well, what is interesting is in the study that you're I hope you're referencing is the one that we co-sponsored with the National Association of Hospice and Home Care, or NAC, where we commissioned NORC at the University of Chicago to look at the value of hospice in Medicare. And what was wonderful about this study is that it was one of the most robust analyses of claims-based administrative data that actually took matched cohorts and looked at patients that, based on the claims data and based on the information that they were able to determine, looked like patients who could benefit from hospice. They of course, had data from patients who utilized the hospice benefit, but they were able to sort of design this matched cohort study and, in contrast to where a lot of folks have been concerned, that people who have longer lengths of stay are costing CMS to much a lot of money, the study actually showed that cost savings continued even after that six month mark, so after 180 days of somebody being enrolled in hospice. So they actually looked at it almost 12 months total amount of time to you know, really figure out what those savings were when the break-even point happened. And they looked at those patients across disease types so they broke them into you know sort of primary disease categories and it was a really, really promising I shouldn't say promising, it was a really exciting but discovery to understand that even those longer lengths of stay are still saving the Medicare program a lot of money.

Rory: 8:57

Where this ties into the guide model, of course, is that dementia is one of those illnesses that has a very unpredictable trajectory. A lot of these patients may live with the illness for eight years, 10 years, and the guide demonstration model is expected to go until 2032. So after implementation in 2024, it's going to run for eight years. Part of the reason for that is because of that long, if you will runway towards the end of life that dementia patients have. So it'll be a really interesting opportunity to provide support for those caregivers to make sure that, as patients and their caregivers needs change, that the level of care can be adapted to wherever they are in that illness process and not tied to prognosis, like the hospice benefit is.

Jennifer : 9:42

Right and that totally makes sense to me to structure it that way. We know that without any kind of a framework, many individuals that are living with dementia have really fragmented care. They're doing that churn that ER hospital, maybe back out to home health, maybe out to a stint and a sniff and come back out to the community. It's that huge churn and then they're back and they're back and they're back. And when I look at this model, it's really focused on that coordination piece, that decrease of fragmentation piece, and there's building of health equity into the model as well, which we know that CMS is really focused on sprinkling health equity in everything that they do these days. But in your experience with caring for individuals living with dementia, that underserved population is probably a huge consideration. What are your? How can you talk to us about that?

Rory: 10:54

Yeah, I'm really excited that there is this health equity component to the guide model, because one thing we know in general is that traditionally marginalized communities or some of those underserved populations, historically do not have a great uptake of the hospice benefit. So this is an opportunity to work with folks as you mentioned upstream, but programs that design opportunities to engage members of their community who are in those traditionally marginalized groups, we may be able to see them having better supports and hopefully better outcomes throughout the entire eight or 10 years that they're living with this illness and, as you mentioned, dementia sometimes disproportionately affects people in those populations black families, families that are Hispanic or Latino. So it's really interesting that this health equity component is built in and CMS has. Cms has mentioned that this is going to be part of the way they analyze almost all of their models moving forward, so that's really really exciting. As it pertains to the guide model, this is also something that's interesting there will be a health equity adjustment as in a payment adjustment.

Jennifer : 12:07

That's really exciting.

Rory: 12:09

Yeah, so it's going to be based on beneficiaries, health equity scores, and those are going to be determined by social, certain social risk factors, and that's going to depend on the proportion of that population that makes up a program's patient panel. But if you, if there's, like the National Area Deprivation Index and the State Area Deprivation Index, patients who have low income subsidies, maybe for Medicare Part D, or they're duly eligible, if you're a program that's serving a lot of those patients, there would be an adjustment to your payment in addition to the per beneficiary per month payment that already comes within the model. So there is an incentive for programs to ensure that their entire community is well represented in the program and to find ways to engage members of their community that may historically not have been interested in hospital circulated care because of cultural miscommunications, misconceptions around what hospice is or does.

Jennifer : 13:14

Yeah, I see this as a possible game changer in the pathway or the flight path to hospice. You know, if we're engaged with a family in this model and we know that right now there isn't any kind of a cure for different types of dementia, alzheimer's etc. There would be a better transition to end of life care in a Medicare model. So I see that as a total plus.

Rory: 13:43

Right and of course the model is also focused on keeping folks out of nursing facilities if possible. You know, of course, if it's appropriate and needed, they're not going to say no, you can't go to a nursing facility. But we know patients and families for the most part don't want to spend their days, especially their end days, in a nursing facility. So what's exciting is that maybe by better use of the respite approach, helping provide some relief to those caregivers, providing us what's Lorde looking for stipend for respite that will help keep those caregivers, give them that great that they need so that they can come back and continue to take great care of their loved one. So that again is a game changer for the entire palliative care field, because respites really only ever been available to folks in world of hospice.

Rory: 14:38

So I'm eager to see how that one in particular shakes out.

Jennifer : 14:41

As am I. So, Roy, let's say that I'm a home health or a palliative care or even a home care provider. Why should I be interested in participating in this model?

Rory: 14:55

Well, in addition to the fact that, as we know, palliative care the way the reimbursement is structured currently with a Medicare Part B billing, is generally not sustainable for a lot of programs. This is an opportunity to have another revenue stream. And, of course, we're not here just to talk about revenue, but it is important to have a PDPM model for your members based on their level of acuity or their complexity in their illness and whether or not they have a caregiver. There's different tiers of payment. This is a huge opportunity to have some revenue coming into your program to better support these patients with dementia. So if you are a palliative care provider or if you're a home health agency that finds that you see a lot of patients with dementia in your patient panel, there's an opportunity to partner with other folks in your community to serve these patients.

Rory: 15:47

If you don't have a specific dementia program or maybe your program is fairly robust but you're missing a couple of things that CMMI is looking for, you can partner with other members in your community. Whether that's a geriatric practice, assisted living maybe you have some need a place to have folks go for respite there's a whole host of opportunity for your palliative or home health practice to partner with folks in the community to develop this really robust service. So I'm really hoping that a lot of agencies or organizations, physician practices that provide home health or palliative care are interested in looking, interested in participating in the model, because I think it's going to be the rising tide. You know, graces all votes. I'm really hoping that that will improve care for a lot of folks across the community.

Jennifer : 16:38

Yeah, I agree, and I think we need to have as many folks in the pool as possible in order to get a really good feel for how this might work. And we know that adjustments can be made to a demonstration as it moves forward, and you know CMS has done that before and I'm sure they would do that as we move forward as well with this demo. You mentioned partners, and I'm glad you did that, because another partner in this particular model could be CHAP, because we do have dementia program practice standards and we develop those with the assistance of experts in the field and they're very practical, they're very easy to understand and they can certainly help an organization that already might have dementia program outlined, or if an organization is just thinking about getting going with something, I think they could be applicable to that organization as well. So I mentioned two pathways. Can you talk a little bit about the two pathways of the model?

Rory: 17:52

Yeah. So what is wonderful about this new model is that there are these two pathways. If you are an organization that hasn't established program, you can pretty much get started after they can submit an application this fall. They're not ready, they're not released yet, but they're coming out soon and you can pretty much get started in July of 2024. If you are an organization that is not quite fully fleshed out in terms of your dementia care model but you're interested in participating in this program, you can also submit this application. But you may be slotted into the new program and you have a year, basically a year's runway to get your program fully fleshed out according to the guidelines of the model. It gives you some time to maybe bolster your technology suite, maybe partner with community-based organizations that fill in the gaps in your program. So those are sort of the two main tiers a runway for an established program that's ready to go in July and then a year's startup that you can get your program off the ground with. So it's really exciting.

Jennifer : 18:59

I really think an organization, no matter what it is, that they focus on participation in a model like this helps expand their quality footprint, so to speak. I think organizations that don't do things outside of their scores are not proving their complete value, if you will. So we know that, as people are aging out, that dementia is one of those things that could be possible in their array of diagnoses that they may have. And we have a whole slew of baby boomers that are going to be aging now. It doesn't mean that every baby boomer is going to have dementia, but the odds of percentage increase are there that these providers upstream will be caring for individuals, as we have high percentages of boomers aging out coming to them for various services. Again, I'm going to put you on the spot and say what are your thoughts about the value of organizations really thinking about this, you know, from a variety of different perspectives.

Rory: 20:24

You mentioned quality and you mentioned the boomers and you mentioned all of these different things, and I think this model is a huge opportunity for palliative care, because a lot of times we've described palliative care providers as a quarterback, Somebody who can kind of look across the field and see what's going on with the patient and their family and, you know, just kind of steer I'm gonna mix metaphors here steer the ship. You know I had a quarterback in and now we're on a boat Quarterback on a boat.

Rory: 20:53

Exactly. You can drive your boat as a quarterback, because there's a lot of things that are gonna improve the quality of life for patients that sometimes maybe your primary care doc, even though the intention when those roles were created was for that person to be the quarterback. That hasn't always borne out the way I think it was intended. So you may have folks who have a lot of different illnesses. They may be seeing a number of different specialists. They could be on a bunch of different medications. Maybe not all of them are working well together.

Rory: 21:23

So some of that quality data reporting that CMMI is looking for in this model is going to be addressed. You know there's gonna be they're looking at high risk medication use and so hoping that beneficiaries are able to get rid of some of those medications that might actually be causing them problems. Of course they're gonna be looking at the quality of life and that's gonna be beneficiary self-report or caregiver self-report. They're gonna be looking at caregiver burden. We know that caregivers are incredibly stressed out.

Rory: 21:54

Arc Angels, the organization, has what they call a distress thermometer that you can, as a caregiver, type a bunch of your feelings into about certain questions that they ask and it'll tell you your distress level and it's really helpful to realize if you're in the red, you know, maybe that's the time that you need to be looking into a respite situation for your loved one. And then, of course, you know certain care delivery metrics and social determinant of help. All of those things fall into improving quality. So I think that there is again a lot of reasons for palliative care organizations to want I think they should want to participate in this. I think it's gonna be really wonderful for folks.

Jennifer : 22:34

I hope so, and I'm kind of of the mind that you know, if you didn't step up to the plate and try, at least try to participate. Put your name in the ring, maybe get selected. Maybe you don't. Don't gripe on the back end right About how you're not getting paid for this, as should it move forward into a permanent arrangement, all right. So let's say I'm an organization and I'm trying to make that decision whether I'm interested in throwing my hat in the ring or not. What are some factors that I can consider to help me make that decision?

Rory: 23:11

One thing I really like about this model excuse me is that your organization does not have to have all of the components of the model in order to be selected. This model is really encouraging organizations to partner with other folks in the community to flesh out those gaps. So if you take a look at your, you take a look at the model fact sheets that are available on CMMI's website. They have a one-pager infographic that's really helpful. You can basically say you know what, I'm 80% of the way there.

Rory: 23:44

So figure out where that 20% your organization is missing and then figure out who in your community has those capabilities whether that's a technology or maybe it's 24 seven coverage, or maybe you don't have a great partner right now for respite, but you know a nursing facility or an assisted living who might be a good partner that you can establish relationships with those organizations and then come into the model together as almost like a new co. That allows you to yeah, that allows you to provide all of the services that the model is asking for. So I would say that hospice, or I would say to palliative care programs, just because you don't have all of the elements of the model does not preclude you from participating. Figure out who in your community you can work with and make some phone calls and make some new friends.

Jennifer : 24:34

It's definitely a partnership community model, for sure, and I love to see that because I think you know most people want to stay in situ. They want to be there for as long as they can, if not up till they take their last breath. So, oh my gosh, Rory, thanks so much for sharing all of your expertise with us today. Do you have any final thoughts for our listeners?

Rory: 24:59

I think my final thought really would be I would just strongly encourage, as I just said, encourage folks to go to CMMI's website, take a look at the material that they have there and try to put an application in when that becomes available later this fall.

Jennifer : 25:14

Great, and I know we're gonna provide some links, Many of them that you supplied for us. We'll have that available to our listeners as well, and thank you again, Rory. You're just a plethora of information.

Rory: 25:29

Thank you for inviting me to speak about this, Jennifer. I'm really happy to have done so.

Jennifer : 25:33

Thanks. We'll talk again, I'm sure, and thanks to all of you for taking time out of your day to plug into CHAPcast From me and the entire CHAP team. Stay safe and well, and thanks for all you do. Upbeat music playing.