An Introduction to the Guiding an Improved Dementia Experience (GUIDE) Model of Care

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In today’s episode, Matt and Lauren discuss the new CMS GUIDE model for dementia care with Dr. Brystana Kaufman, MSPH, PhD – a health services researcher at the Duke-Margolis Institute for Health Policy at Duke University. The GUIDE model aims to improve the quality of life for people living with dementia by reducing strain on caregivers and enabling individuals to remain in their homes.  

Brystana talks with the Minding Memory team about a spectrum of topics as related to the GUIDE model including, what motivated CMS to develop and implement the model; what defines a serious illness; how the model supports caregivers; and what an organization needs to have in terms of services in order to participate in the implementation of the GUIDE model. Dr. Kaufman is the co-author of an article in the Journal of the American Geriatrics Society titled “GUIDE Dementia Model: Opportunities for Serious Illness Care” which provides additional insight into the model.    

Brystana Kaufman, PhD, MSPH Faculty Profile 

Article referenced in this episode:  

Kaufman BG, Grant M. GUIDE dementia model: Opportunities for serious illness care. J Am Geriatr Soc. 2024 Jun;72(6):1935-1938. doi: 10.1111/jgs.18787. Epub 2024 Feb 5. PMID: 38315037. 

More Resources

Guiding an Improved Dementia Experience (GUIDE) Model 

Health and Aging Policy Fellows 

Transcript

Matt Davis:

Way back in our first episode this past fall, Lauren and I discussed topics that we wanted to cover on this season of Minding Memory. Among these, as Lauren recently reminded me was wanting to talk about the new GUIDE Model for dementia care. GUIDE stands for “Guiding an Improved Dementia Experience”. This care model aims to improve the quality of life for people living with dementia by reducing strain on caregivers and enabling individuals to remain in their homes. Better late than never, in this episode we'll discuss the ins and the outs of the Center for Medicare and Medicaid Services New GUIDE Model for Dementia Care. I'm Matt Davis.

Lauren Gerlach:

I'm Lauren Gerlach.

Matt Davis:

And you're listening to Minding Memory. We're joined today by Dr. Brystana Kaufman. Dr. Kaufman is an Assistant Professor in Population Health Sciences at Duke-Margolis Institute for Health Policy at Duke University. She's a health services researcher whose work focuses on improving the value of care for older adults with complex care needs such as those with serious illness or developmental disability. Dr. Kaufman has expertise in causal inference as well as Medicaid and Medicare value-based payment models. Brystana, welcome to the podcast.

Dr. Kaufman:

Thanks, Matt. Great to meet you.

Matt Davis:

Dr. Kaufman was the lead author of a commentary titled “GUIDE Dementia Model:  Opportunities for Serious Illness Care” that was published in the Journal of the American Geriatrics Society. A link to the article can be found attached to this episode. Make sure to check it out. To start things off, I was wondering if you could tell us just a little bit about the timeline of the GUIDE Model and specifically you know, what motivated CMS to develop and implement it.

Dr. Kaufman:

Yeah, of course. GUIDE is an alternative payment model and it's designed to improve outcomes for people who have dementia who are also enrolled in Medicare. And it was launched last summer, 2024, by the CMS Innovation Center. And when it was being developed in 2022, 2023, I was actually a fellow with the Innovation Center that was a part of the Health and Aging Policy Fellowship. Encourage everyone listening to check it out. It was a fantastic opportunity to become familiar with the federal government and how policies and regulatory roles come into being so things like GUIDE can help to improve care. I worked with Tonya Saffer, who was leading the team, building the GUIDE Model as well as Jake Quinton who has expertise in quality. And of course the views that I'm sharing today are just mine. These should not be attributed to CMS or any of my other employers.

But at the time the Innovation Center had been going through a shift in their strategic priorities, and this is all public information, so they actually released a strategic refresh. In this report they talk about strategically aligning their different payment models and focusing in on a few models that would be really high impact instead of having so many because they do a lot of different things. And one of the priorities that they focus on is accountable care. Using payment strategies to reward high quality care and improve value as well as whole person care. Thinking about things like social needs as well as health risk factors to improve care for the whole person. During that refresh, there were two serious illness models that were really impacted. The Primary Care First Model had a Serious Illness Program, which could have enrolled people with dementia, and there was also the Direct Contracting Program again that had a high-risk track that could have enrolled people with dementia.

The Direct Contracting was rebranded as ACO REACH as a part of that refresh and the Primary Care First Serious Illness Program was withdrawn. These were some big changes. And when I was a fellow, I was really curious to see from the perspective of CMS, how we were going to address the needs for people with serious illness like dementia. And Congress was really interested. They were calling for better care, better care management for people with dementia. They introduced the Comprehensive Care for Alzheimer's Act and then the President was even recognizing the burden on caregivers and there was an executive order really encouraging better supports for caregivers and high-quality care. It was a really exciting time to be involved with the Innovation Center and really set the stage for an innovative model like GUIDE to come into being.

Matt Davis:

You've used that term “serious illness” several times. Is there some strict definition of what that term refers to?

Dr. Kaufman:

There's a couple of different components. Amy Kelley has done some great work in this space of identifying the denominator. Diagnosis is of course part of it, having a diagnosis of a serious illness, but also thinking about the symptom burden and how that's impacting activities of daily living, functional status. And then that level of need can have an impact on caregivers. We have paid caregivers, but also informal caregivers, often family members who are providing care and helping people on a day-to-day basis. All of those components having a high risk of mortality, morbidity. It's not a strict definition, but it's certainly a population that requires a lot of care and we need some payment models that can support providers who are trying to provide care to that complex population.

Lauren Gerlach:

Kind of big picture for our listeners, what exactly is the GUIDE Model and what are the components of this model?

Dr. Kaufman:

The GUIDE Model sets some standards and expectations around what dementia care should and could look like to address all of those needs for both caregivers as well as the individual with dementia. And so there's a lot of stakeholder engagement that went into developing what that standard should look like. And there was also a need to allow flexibility because dementia care is not one size fits all, needs change over the course of illness. And so I was really impressed by the thought and the evidence and considerations that went into developing this model of care. But just at a high level, this is a per member per month payment that covers a bundle of services and that payment can be adjusted for quality because we want to reward high quality care and it's also tiered. There are different levels of payment when an individual has a mild, earlier stages of illness versus a more severe stage of illness. And it's also adjusted for caregiver burden, which was really a novel to think about the burden for the caregiver as well as the severity of wellness for the individual.

Some of the key components are having an interdisciplinary care team and at a minimum that is a physician with expertise in dementia care and they can demonstrate that a couple of different ways as well as a care navigator. And so that individual is seen as being the primary contact for the family and providing support and care coordination, helping to link them with services so that all of their needs are met. The team can also include other members. Ideally you might have a behavioral health provider, a pharmacist, occupational or physical therapist, and that's really needed to have that comprehensive care plan, which is also mentioned in GUIDE as supporting shared decision making, considering individual goals and preferences, and having that longitudinal support over time.

Lauren Gerlach:

Great. And how does GUIDE differ from other models such as Patient-Centered Medical Homes or the Program for All-inclusive Care of the Elderly, like the PACE programs? Can you talk a little bit about how this is unique?

Dr. Kaufman:

Of course, there are some similarities. You mentioned PACE and that also serves older adults with serious illness who are living in the community and has a comprehensive package of services. But there are definitely differences. GUIDE is tailored to individuals with dementia, while PACE serves a broader range of serious illness and PACE requires that institutional level of care. Even though individuals are being served in the community, they have a much higher level of need. The GUIDE Model is intended to serve individuals starting from diagnosis. The care model changes and evolves over time as that illness progresses. For providers, a big difference between PACE and GUIDE, PACE is a capitated program and includes total all of the services that beneficiaries need across the continuum of care. There's a lot of risk for a provider who's getting one payment and has to be responsible for all of those services.

Whereas GUIDE is layered on top of the fee for service payment model, which a lot of providers are familiar with. You provide a service, you bill, you get reimbursed. And then the GUIDE per member per month payment is layered on top of that to cover a bundle of services that include those care assessments, care coordination, the navigation, and the caregiver supports. But because there's no special facilities, it's not total cost of care reduced upfront cost compared to PACE, it's a lot easier I think for providers to get involved. You also mentioned Patient-Centered Medical Homes and that's a lot more similar to the GUIDE Model because that also includes a longitudinal payment, also intends to support care coordination. The differences would be GUIDE is not requiring a primary care physician, they're focusing on that dementia expertise and it's really specific to dementia patients, whereas patients that are in Medical Home could have a broad range of individuals.

Lauren Gerlach:

That's really helpful. Could you tell us a little bit about the ways in which the aspects of the program were maybe chosen? Maybe pulling off of some of the historical dementia care models that have been out there thinking some about Malaz Boustani's work at Indiana with the Aging Brain Care Model, David Reuben's work at UCLA, kind of how those components were selected and maybe some of the historical context that led to this.

Dr. Kaufman:

It was really exciting to see all of the principles of serious illness care really thoughtfully incorporated into the GUIDE expectations. And so you mentioned a lot of really important programs and at CMS was a lot of stakeholder engagement to better understand those key components that are effective in improving outcomes for people with dementia. And so some of the things that really stand out to me as being innovative, it's focusing on outcomes like quality of life that are really patient and family-centered, including the caregiver burden. Again, things that really matter to patients and families as opposed to the more quality process measures that we sometimes see prioritized in payment models like this. Not that those won't be measured of course, but the focus is on patient and family-centered outcomes. The care model to align with those outcomes is including the whole person, not just the dementia care, but also social engagement, the emotional needs, and it includes social needs like referrals to social services, nutrition, all of those different components that affect quality of life, even if it's not directly related to their illness.

I mentioned the interdisciplinary care team. I think a lot of models have observed that that's really important for addressing all of these different needs across the care continuum. I haven't seen any information on how this is being implemented. I'm really curious since the GUIDE Model only requires the care navigator in addition to the physician, but hopefully there are other roles that are being included as this model is being implemented nationally.

Matt Davis:

We understand that supporting caregivers is a big part of achieving approved quality of care for individuals living with dementia. In what ways does GUIDE Model support caregivers?

Dr. Kaufman:

There are a couple different strategies to address the caregiving burden. One is through the payments and providing the organizations with the resources that they need to better support caregivers and then they have flexibility to provide education in a way that is going to meet the needs for that family and really viewing the caregivers as a part of the care team. Because the payment is tailored based on the caregiver burden, that means providers need to know if there is a caregiver, which seems really basic, but for a lot of our health systems we don't track that. We don't know if there's a caregiver, let alone what their burden is. I think tying the payment to knowing if there's a caregiver, what is their level of burden, right there creates an incentive to integrate caregivers into the care team and provide those supports.

Some of the specific things that are mentioned in the standard of care would be the caregiver skills training. They provide information on dementia, the diagnosis, the trajectory of illness, how to cope with some of the aspects of care that might be more challenging. There might be support group services or just ad hoc support calls because they have that care navigator and that 24/7 support, so they always have someone to reach out to when there is a crisis that occurs. Those are the ways that I could see the GUIDE Model really benefiting caregivers. There's also opportunities for respite care, which outside of the GUIDE Model are not well reimbursed. There's some through the VA and some opportunities through the Medicaid program that's really limited in Medicare to have that service reimbursed so caregivers would have to pay for that out of pocket.

Matt Davis:

That seems like a unique aspect. How exactly does that work? I mean are they just sort of given a day off and then have financial support to have someone provide assistance or how exactly is it implemented?

Dr. Kaufman:

I know what the GUIDE Model will cover. Again, I'm not sure how this is being implemented in practice, but the GUIDE Model specifically would cover respite care in three types of settings. The one that's required is respite care at home. GUIDE would send someone to the house to take care of the individual so that the caregiver can get a break because being a caregiver can be really rewarding, but it also can be time-consuming and it's really hard to balance the needs of caring for someone while also meeting all of your own needs. Having someone come to the beneficiaries home is required. The organizations that are participating in GUIDE may also offer respite care in adult day center or in a full-time facility. It's only up to $2,500 a year for each of the caregivers. It is still pretty limited. My guess is that most GUIDE participants are focusing on that in-home care setting, but I would be really curious to see if there are higher level options available for people in the GUIDE Model. A lot of opportunities to learn more about how this is being implemented and what's really effective.

Lauren Gerlach:

A unique aspect of the GUIDE Model is that it requires availability of 24/7 access to support line for caregivers. You may or may not be able to speak to this in terms of how that's practically achieved by most GUIDE participants or the thoughts maybe of having that available as they were putting the model together.

Dr. Kaufman:

We do know that after hours communication is really important to help to prevent unnecessary care. Sometimes a crisis can be resolved at home if there's someone to provide some expertise, some support, some reassurance to the caregiver. Having a member of the care team is recommended, it could be a third party. The standards for GUIDE do allow outsourcing of that 24/7 line, but it can't just be some publicly available helpline, it has to be something that is contracted through that GUIDE organization so that they know that it's something that is going to help their beneficiaries. They have to be involved in that.

Matt Davis:

Your paper discusses some of the ways that the GUIDE Model may achieve federal cost savings via Medicaid in addition to Medicare. I was wondering if you could talk a little about that.

Dr. Kaufman:

I was very excited to see this. Some of my research focuses on people who are enrolled in both Medicare and Medicaid, the dual eligible population. And so many of the payment models that CMS offers are focused only on Medicare spending. And that their, the CMS Innovation Center specifically their purpose, their whole purpose is to test models that could reduce federal spending. And it is true that Medicare services are the majority of federal spending on healthcare, but the federal government also pays a percentage of Medicaid services.

There's the potential if a payment model for Medicare services impacts the need for services like nursing home use, that's typically covered by Medicaid. If we can prevent or delay the need for people to move from their home into a nursing home, that could reduce the Medicaid spending, which includes a portion of federal spending. Having that view where we're really looking at the whole total cost of care and not just looking at Medicare services gives us another opportunity both to improve care for beneficiaries because most people want to be at home and in their communities as long as they can stay there safely while also taking into account those additional federal dollars that might be saved. If we don't take that into account, we might be underestimating the value of these programs both for individuals as well as our health system.

Matt Davis:

Is it safe to assume that CMS is evaluating the cost implications of the model? I mean, I was wondering too whether it's hard to evaluate costs when you're crossing Medicaid and Medicare.

Dr. Kaufman:

That's a great point. And the linkage of data for Medicare and Medicaid has been historically hard to do, but we've made a lot of progress actually. There's a virtual data research center now where the Medicare and Medicaid information are available in the same place, easily linked. Yes, the Innovation Center is planning to include those Medicaid spending as well as Medicare spending in their evaluation. That was really innovative and exciting and I hope more models that serve dual eligible beneficiaries will include that perspective and include that Medicaid savings possibility when they're doing their evaluations.

Lauren Gerlach:

And so just to summarize for our listeners, what does a potential organization need to have in terms of services to be eligible to participate?

Dr. Kaufman:

We talked about how GUIDE is somewhat similar to an ACO or an Accountable Care Organization. Like an ACO, the GUIDE participants are actually groups of providers and they have a contract about how they are going to share roles and share the resources and those can change over time. Right now there's 390 GUIDE participants and that is not going to change. They're not going to have new participants. The model runs for eight years and we expect these outcomes will take a long time to see. That's why it's a fairly long-term model. While we're not going to have new participants, the providers who are included in those contracts can change. I would encourage people listening to look around your area to see if there is a GUIDE participant that you could contribute and collaborate with.

Lauren Gerlach:

I know you mentioned the 390 some kind of current GUIDE participants. Any sense of the reach in terms of the individual number of patients or beneficiaries participating within these centers?

Dr. Kaufman:

I'm really curious about that too, Lauren. The recommendation was to have a minimum of 200 aligned beneficiaries per participant. I have not seen any estimates and the data that I typically use in my studies are it takes a while for those to be available. The GUIDE Model was just implemented in summer of last year, so we're still in the first year of the program. Some things are evolving. It takes time to enroll patients. There's a voluntary process, so providers actually have to talk to patients and they voluntarily decide to participate. It will take time to build up the population of people who are enrolled in GUIDE, but at the end of this year, I think we'll have a better sense of how many people are participating and what the impact will be.

One other thing I want to mention is that there are actually two tracks for providers participating. And so one is for established programs and those programs have already been providing a model of care that is fairly similar or at least had a majority of the components that are required for GUIDE. And so those programs might enroll fairly quickly, but the second track is to support providers in areas that may have been underserved in the past or they didn't have that type of model established for dementia patients. And so safety net providers, that track is intended to support setting up comprehensive care model in safety net systems. And so they provide upfront payments, they're geographically adjusted, there's equity adjustments to payment as well. Lots of opportunities. I expect over the next couple of years we'll see increasing numbers of individuals participating.

Matt Davis:

We talked about some of the cost implications and CMS kind of evaluating that. I was wondering are they also tracking patient and caregiver outcomes as well?

Dr. Kaufman:

Absolutely. The primary outcomes are focused on quality of life, and so there's a specific measure called the Promise Global Health Scale. And so that's how they're measuring quality of life so that'll start out as paid for reporting and then be included into the quality adjustment in the future. They're also looking at high-risk medications. And so this is really tailored to dementia care to try to reduce adverse events. And then we also talked about the caregiver burden, and this is another unique aspect of the model. They've proposed to use the Zarit Burden Interview. I'm interested to see how well that will work for providers and see where... That will really give us a lot of information about caregivers that we haven't had in the past. I think that's going to be a really exciting opportunity to better understand impacts for caregivers. And then like most payment models, total cost for care is a big one. And the nursing home transitions, which will contribute to costs, but we're also looking at those separately.

Matt Davis:

A lot of our listeners are researchers. Do you know if CMS plans on making some of these data available for other people to use for research or is it just for their internal evaluation of the system?

Dr. Kaufman:

I can speak to what's happened with other demonstration models and we have seen a lot of transparency. CMS has added flags for participation in different demonstration models like ACO REACH or the Medicare Shared Savings Program. I expect that we will be able to identify the people who are enrolled in GUIDE as well as providers who are participating in GUIDE so that we can evaluate it. CMS is going to do their own evaluation, but we might have different questions as clinicians and researchers, so we can look at it in a different way to complement the Innovation Center’s evaluation.

Lauren Gerlach:

Your commentary mentions the aspect of addressing disparities as part of the GUIDE Model. Can you tell us a little bit more about this?

Dr. Kaufman:

There's a couple of different ways that the GUIDE Model really sought to improve the way that it serves beneficiaries that may historically be excluded from these types of models. The first one we mentioned was the track to support new models of care, and that provides financial and technical assistance for the development of new dementia care programs. And that's intended to be implemented in underserved areas who have historically had less access to specialty dementia care.

The second aspect is, okay, we've supported these new providers now we want them to have a health equity plan, so actually have a strategy for reaching out to beneficiaries from those communities and then collecting a demographic data so we can understand how well we did in trying to reach underserved groups. Some of the other aspects, there's the Health Equity Adjustment to provide additional resources to those groups that are serving populations that are dual eligible for Medicaid or living in an area of high deprivation or where they have less resources for healthcare because we know it takes more to support care in those communities.

And then the last thing to note is that the actual diagnosis of dementia can differ in different populations. And so if we rely on a claims-based diagnosis, we might miss a lot of people who could actually benefit from this care. The GUIDE Model recognized that, they saw that evidence and decided to allow providers to use their best judgment. If you're a provider, someone has dementia, you certify that and that beneficiary can participate.

Matt Davis:

Does your team have any plans to study the GUIDE Model?

Dr. Kaufman:

I am very interested in evaluating the GUIDE Model, particularly for those people who are dual eligible for Medicare and Medicaid. And it's also possible that the GUIDE Model might reduce the enrollment in Medicaid, which I think would be really important for states to know if we're impacting Medicaid enrollment. Some states have a medically needy pathway and many people who have to transition to nursing homes then enroll in Medicaid to be able to pay for that care. Those are some of the questions that I'm interested in as well as the overall impact on quality of life and cost of care.

Lauren Gerlach:

Great. Is there anything we haven't covered that you want our listeners to know?

Dr. Kaufman:

I guess I would just share that the GUIDE Model is really innovative and exciting. I hope it's going to really improve care, but it is limited to people who have dementia and it's limited to specific areas that have a GUIDE participant. I think there's still a need to expand high quality, comprehensive whole person care to people with other serious illness or who have comorbid serious illnesses. I'm really excited to look for opportunities to do that. And if the GUIDE Model is successful that hopefully we'll see this expand to other specialties.

Matt Davis:

Brystana, thanks so much for joining us today.

Dr. Kaufman:

Thank you, Matt.

Matt Davis:

And thanks to all of you who listened in this season. 

If you enjoyed our discussion today, please consider subscribing to our podcast. Other episodes can be found on Apple Podcasts, Spotify, and SoundCloud, as well as directly from us at capra.med.umich.edu, where a full transcript of this episode is also available. On our website you'll also find links to other resources we've created specifically for dementia research. Music and engineering for this podcast was provided by Dan Langa. More information is available at www.danlanga.com. Minding Memory is part of the Michigan Medicine Podcast Network. Find more shows at michiganmedicine.org/podcasts. Support for this podcast comes from the National Institute on Aging at the National Institutes of Health, as well as the Institute for Healthcare Policy and Innovation at the University of Michigan. The views expressed in this podcast do not necessarily represent the views of the NIH or the University of Michigan. Thanks for joining us, and we'll be back soon.