The Care Ecosystem: Supporting People Living with Dementia and Their Families

Jump to Transcript

Welcome back to Season 6 of Minding Memory! In this episode, Lauren & Matt speak with Dr. Katherine (Kate) Possin, who holds the John Douglas French Alzheimer’s Foundation Professorship at the University of California, San Francisco Fein Memory & Aging Center.  

Dr. Possin talks about the Care Ecosystem, a telephone and web-based model that provides ongoing education, support, care planning, and coordination for people living with dementia and their care partners. They’ll dig into how the Care Ecosystem was developed, and what studies have shown about its impact on people living with dementia.   

Katherine Possin, PhD Faculty Profile

The Care Ecosystem at the UCSF Fein Memory & Aging Center 

Article Discussed in the Episode:  

Atkins KJ, Kahn JG, Possin KL. Cost-effectiveness and impact at Scale of Collaborative Care and Lecanemab for Alzheimer's Disease. Alzheimer's Dement. 2026; 2:e70054. https://doi.org/10.1002/bsa3.70054   

Transcript

Lauren Gerlach:

Welcome to a new season of Minding Memory. To kick off season six, we're taking a closer look at what comprehensive dementia care can look like for people living with dementia and their care partners. Much of the recent attention in Alzheimer's disease has focused on new medications that may slow cognitive decline for some people in the early stages of disease. These treatments represent an important advance, but medications are only one part of dementia care. They don't necessarily help families manage a sudden behavioral change, sort through a complicated medication list, respond to a safety concern, or navigate the many medical, practical, and emotional challenges that arise over the course of dementia. Much of that work happens at home and between medical appointments, often with families trying to piece together support on their own.

Today, we're talking about the Care Ecosystem, a telephone and web-based model that provides ongoing education, support, care planning, and coordination for people living with dementia and their care partners. We'll talk about how the Care Ecosystem was developed, what the program looks like in practice, and what studies have found about its impact on people living with dementia, their caregivers, and healthcare use. We'll also discuss a recent modeling study comparing the projected health and economic impact of collaborative dementia care with lecanemab and what the findings might tell us about how we value and invest in different approaches to dementia care.

Matt Davis:

Welcome to Minding Memory, a podcast devoted to exploring research on Alzheimer's disease and other related dementias. Here we'll discuss some of the most compelling research and talk with leaders in the field about how their work is improving the detection and treatment of dementia. I'm Matt Davis.

Lauren Gerlach:

And I'm Lauren Gerlach.

Matt Davis:

We're both researchers at the University of Michigan. I have a PhD in data science.

Lauren Gerlach:

And I'm a geriatric psychiatrist who specializes in diagnosis and management of dementia.

Matt Davis:

I'll work to minimize the use of medical jargon in our discussions.

Lauren Gerlach:

And I'll make sure that the research we talk about has practical real world applications to people living with dementia and their care partners.

Matt Davis:

Thanks for joining us and let's get started.

Lauren Gerlach:

We're lucky to be joined today by Dr. Katherine, or Kate, Possin. Dr. Possin is a professor of neurology at the UCSF Memory and Aging Center and directs the Care Ecosystem. Her work focuses on improving the detection, diagnosis, and care of people living with neurodegenerative disease. Dr. Possin was also the senior author of a recent study titled Cost Effectiveness and Impact at Scale of Collaborative Care and Lecanemab for Alzheimer's Disease, that was published in Alzheimer's & Dementia. We'll include a link to the study attached to this episode. Kate, welcome to Minding Memory. We're so glad to have you here.

Katherine Possin:

Hi, Lauren. Hi, Matt. It's great to be here. Thank you for having me.

Lauren Gerlach:

So to start off, Kate, can you tell us a little bit about yourself and how you found your way into dementia care?

Katherine Possin:

Yes. So I'm a neuropsychologist by training, and I started out my career thinking about brain behavior relationships. In fact, my career development award, my K award from NIH, was actually on visual spatial cognition and how it's organized in the brain and parallels between human patients with Alzheimer's and rodent models. So I was really interested in how the brain worked.

But as I was advancing through the early stages of my career through my fellowship and joining the faculty, I really was passionate, becoming more passionate about trying to do work that would directly benefit patients and families. And when CMMI announced an opportunity to apply for a healthcare innovation award to improve care while also reducing, or at least not increasing healthcare costs, I saw it as an opportunity to see how can we get quality dementia care out to all the families that so desperately need it. And my career took a bit of a turn at that point.

Lauren Gerlach:

And was there a particular experience or two that you can recall that really helped solidify this for you or made you realize some of the challenges that patients and families go through when receiving the diagnosis and then trying to care for patients at home?

Katherine Possin:

Well, when I joined the UCSF Memory and Aging Center, I was so impressed by the level of care that was provided to patients and families. It is and was a multidisciplinary approach where families would come in and get evaluated by a neurologist, a neuropsychologist, and a nurse would also talk with and evaluate how the family was doing. And all of this was integrated in the same day. The family would come in for the whole day and we would provide this level of care as well as a quality follow-up with both the nurse and the neurologist.

But I was also struck by how very small proportion of the population of families living with dementia found their way into our very specialist tertiary care center. And in fact, our typical patient was a CEO or a professor. We were getting the most advantaged slices of the population. So I was struck both by, okay, this is what really good care can look like and it's really helping the patients and families, but very few of the families who need it are actually getting it. That's what compelled me, as well as my colleagues, to think about how can we take the key ingredients here and make them scalable? That was the foundation of the Care Ecosystem.

Matt Davis:

Sounds like an amazing model. But when you looked at dementia care out in the wild, not in your system, I guess what felt most broken or incomplete?

Katherine Possin:

Yes. Well, what I was seeing was that families were having to figure out how to deal with dementia as if no one had ever done this before. And caregivers were shouldering these burdens with limited support from the healthcare system. So patients, the typical thing that we would see is that, first of all, a patient is diagnosed quite late, after the patient's already experiencing significant functional limitations.

And then by the time they're diagnosed, the family's just trying to figure out what is this? What should I expect? What do I need to plan for? And no one is helping them with this journey. Families are searching the internet, maybe talking to friends and families who've experienced this, but really navigating this on their own.

When they do get help from the medical system, it's these intermittent appointments that they have to schedule in advance. So if they're dealing with something that feels like a crisis, like maybe a new behavioral symptom, wandering, agitation, for example, maybe they try to make a medical appointment, they don't get one for a few months. Well, that's not going to help them with the problem. And so then things turn into a crisis. They go to the emergency department. This turns into a whole cascade of bad outcomes, including increased healthcare costs. So this is what we see as sort of typical crisis oriented and expensive healthcare in dementia that I think can be better managed with a comprehensive dementia care program like the Care Ecosystem.

Matt Davis:

From your perspective, how much care happens outside of those medical visits?

Katherine Possin:

Well, it's the caregiver, right? The caregiver is the one, I mean, as the patient becomes more impaired with dementia, it becomes a 24/7 job, and that informal caregiver is the one that's doing this work. Of course, if they have resources, they may be able to pay for some in-home care, pay for a day center for the person with dementia to go to so that they can get some sort of respite. But of course, this is very expensive. And also turning to community-based organizations that provide services and support. So this is, I think, what we see out there in the wild of dementia.

Lauren Gerlach:

And how did some of these gaps lead to the development of Care Ecosystem? What were you really trying to create that was not already out there?

Katherine Possin:

So we proposed this model to CMMI. We wrote this application in 2013, and it was funded in 2014. So we developed this model of care that we thought would provide what we thought   were the key components of quality dementia care, but in a way that was scalable. So that was central to our design. So from the very beginning, we were thinking about, well, we want to design care that works, but it's scalable.

So we put forward this role of the care team navigator as the primary point of contact with families. And this is somebody who is unlicensed, but we select them because they are very good at showing empathy, compassion, connecting with these caregivers over the phone, building relationships. I don't think they need to be licensed to do that as long as they're well trained and supervised and are very clear about what is beyond the scope of what they were trained to do and who they can triage to or consult with when things exceed their scope. But having this unlicensed person who has the time to build relationships, and who frankly isn't that expensive compared to say putting a nurse or a nurse practitioner, even a social worker can be more expensive. So having the navigator made it more scalable.

And then also making sure that those dementia experts are part of the team. So a lot of people ask me if you can just hire navigators to do this on their own, but you cannot. You need dementia experts as integral to the team. And one of the things I love about the model, and we designed it this way intentionally, was we were trying to extend the reach of the limited dementia expert workforce. There are not enough dementia expert nurses and social workers and pharmacists. And so we wanted to make sure that they were operating at the highest level that they were trained to operate, and that we were maximizing their reach.

So with a team of care navigators, and then also having professionals with nursing, social work, and pharmacy expertise, you can serve a lot more people than if you didn't have those navigators. But you're really getting the expert care from the experts through the navigators to the patients and families. So that's kind of how we thought about, well, what kind of care is needed and how can we package it in a way that's scalable? And of course there's the telephone based component, that makes it more scalable and also nice for caregivers who are very busy and they want help when they need the help, and often they love that they can just pick up the phone and get that help.

Matt Davis:

For someone who's never heard of the Care Ecosystem, I guess what does the program look like in practice?

Katherine Possin:

Great. Yes. So in practice, if let's say your loved one has dementia, and you've just signed up to be in the Care Ecosystem, the first thing you would go through is a care planning process. This can be completed either by a navigator or sometimes it's done by a nurse practitioner, or one of the licensed professionals on the team. And it can happen over a series of phone calls, usually within the first three months, usually less time than that.

But during that care planning process, we're really trying to evaluate the medical and social needs of the patient and the caregiver and their whole ecosystem, and coming up with sort of the plan to address those needs. So that happens in the beginning. So there's this intensive process as we onboard the patient and family, make sure they understand what kind of services that we can offer, how we can help them.

And then it shifts to a more continuing care period where we try to have contact with each family about once a month, but we do personalize the dosage to the needs and preferences of each family. But we really look to have at least monthly contact. So if they're not reaching out to us, then we are proactively reaching out to them to try to figure out how we can be helpful.

During those monthly contacts, we prioritize the needs of the family, what are they bringing to us? And as time allows, we have the navigator work through different care protocols that help the family plan ahead for needs that maybe are present now or are going to be present in the future. So we try to shift it from a reactive style of care to a proactive style of care.

And then we update the care plan. We recommend updating the care plan annually, and of course monitoring how the patient's family is doing with evaluation measures. We also like to get input from the caregiver about how we're doing. So we frequently will ask in our surveys, for example, maybe you do it at three months right after they've just been in the program for a little while, or maybe you do it at 12 months, you ask them questions like, "Hey, what's been most helpful? How could we be more helpful?" And so we use that information for rapid cycle improvement, try to identify problems early in how we're delivering the care. So those are some of the things that you can expect if you're part of the Care Ecosystem.

Matt Davis:

Can I assume that you get into, in terms of the care plan, do you get into the social aspects? I mean, things get really complicated, right? Like managing finances and all those types of things as well?

Katherine Possin:

Yes, definitely. I mean, gosh, managing finances is really important in dementia care. A lot of people who join our program, it's the first time that they learn that Medicare isn't going to pay for the long-term care costs. So we need to help make sure families are aware of the cost of dementia care and that they're planning for that early. So yes, there's a lot of different elements that we touch on in the care planning.

Some of the other elements would be medications. Reviewing those medications that the patient is on, and can we reduce any potentially inappropriate medications, potentially unsafe medications as part of the care plan. Safety in the home, thinking about that. Caregiver wellbeing, making sure the caregiver is attending to their own needs. These are some examples of things that are covered in the care planning process.

Matt Davis:

And do the primary care providers, are they automatically involved, or how do you interface with those?

Katherine Possin:

Ideally, yes. The primary care providers, and really any of the other providers who are actively involved in the patient's care, we hope to be interfacing with them in some way. One thing that we like to do is make sure our care plan is in the EHR in a place that's really visible, that it pops up at the top of the patient's chart when it's opened. This is really nice if the patient goes to the ED, then the ED providers know what's going on, for example. But when you have dementia, dementia can influence all your other medical conditions and how they're cared for. So we really want to make sure that, not only the primary care provider, but all the other providers who are involved know what's going on and what the care plan is.

Matt Davis:

So let's turn to the original Care Ecosystem trial. Can you talk a little about that study?

Katherine Possin:

Absolutely. So with the Care Ecosystem, as I mentioned, we were initially funded with a healthcare innovation award from CMMI, the Center for Medicare and Medicaid Innovation, back in 2014. Which by the way, was a very exciting time. I was just newly on the faculty at UCSF. And as I mentioned, my prior work was in brain behavior relationships. And now I'm on this team designing and testing this care program. We had three years to develop and test this intervention, which was very fast. Thankfully, we had an incredible team that was very motivated to do this.

So we developed the intervention iteratively. One of the things I struggled with when we were just starting out the trial was whether we really needed to firm up what is the intervention in the very beginning and then not change it at all for the whole trial. Because otherwise, if you're changing the intervention during the trial, then what are you actually testing?

So this was something that was difficult because I knew that CMMI and our patients and families also wanted us to have the optimal intervention by the end of the period. So if we froze an intervention that could have been improved, this would have not resulted in the best product at the end. So that was one thing that we struggled with in that original trial.

So what we did is in the early stages of the trial, we implemented this agile development process where we rapidly, at least every month, we're collecting inputs from caregivers, primary care providers, our own staff members who are delivering the care. And then using that data to continually refine the intervention until we did... But we still use the data collected during that time as part of the trial. And we did kind of really firm up the core elements pretty early on, although we continued to make some improvements throughout.

Anyhow, we enrolled 780 dyads into the trial, the randomized clinical trial, and they were randomized two to one. So for every three people enrolled, two were in the intervention group and one was in usual care, which of course was very messy and heterogeneous because we enrolled people throughout the states of California, Nebraska, and Iowa from two hubs, one at the University of Nebraska Medical Center and one at UC San Francisco.

So we collected surveys at baseline pre-randomization, six month and 12 month. We also looked at the electronic health record and Medicare claims data. And we found that the dyads enrolled in the Care Ecosystem compared to usual care showed benefits in terms of caregiver rated patient quality of life. Also, caregiver wellbeing measures, including caregiver depression, caregiver burden. We found reductions in how often the person with dementia was using the emergency room. And we also found reductions in the use of potentially inappropriate medications as well as the total number of medications associated with the treatment group.

And then lastly, what we found, which I think actually surprised me how much cost savings there were associated with the intervention. So the last paper we published on the trial results was when we finally got all the Medicare claims data. We were able to compare the cost of care to Medicare of the people in the treatment group to the usual care. The people in the treatment group cost $500 less per member per month than the people in the control group. So substantial savings to Medicare.

And this is not just important to payers. I think that this cost reduction reflects this shift from crisis oriented expensive care to more proactive care. So I think that this cost savings is important to payers and motivates payers, of course, who want to manage healthcare costs, but it also really reflects that things are going better for the patient and caregivers, and that's why the healthcare costs are less. So those were the main findings that we had from our first big randomized clinical trial.

Matt Davis:

That's great that you captured cost. I mean, it's not something that we... It's easy to overlook that, but it's really important for health policy and stuff to motivate folks to kind of adopt some of these types of things.

Katherine Possin:

Yes, absolutely. And as someone who maybe wasn't even balancing my own checkbook when I started doing this research, barely knew what economics was, I'm now really excited about healthcare economics. I did not train in this at all, and I think this is an example of how one's career can evolve. So for people who are starting out their career, and what exactly do I focus on, your career can and should evolve. And health economics is something that I've picked up over time because it is so important to impacting healthcare policy.

Lauren Gerlach:

What have you learned from bringing this model into different health systems and kind of community settings? What have been some kind of the lessons learned?

Katherine Possin:

Yeah. So we have been really fortunate to learn about implementation of this type of care. And I mean, I think one of the places we started with was thinking about our implementation strategy as really an intervention itself. So we didn't just publish the results, we created a whole system for dissemination.

So we put all the materials, and we had all of the materials that you need to launch the Care Ecosystem on our website. So if you search for Care Ecosystem UCSF, you'll find our website, and on there you'll find a toolkit for health systems, which by the way, we just updated this month. So I'm really excited about our new toolkit. And we have a whole training program for navigators. It's videos that they watch and quizzes, all of our care protocols, educational materials for both the navigators and ones that you can share with the families, often in English and Spanish.

So it's like your one stop shop for all of this. We put all that online. And then simultaneously we were publishing the positive results from our trial. And so what we found is that health systems and some community-based organizations started to pick up the Care Ecosystem, and would often reach out to us and tell us, "Hey, we're doing this." So we started these monthly, what we call implementation meetings, back in 2018, actually. They've been running continuously since then. There's never been a month missed.

And these implementation meetings are attended by these amazing clinician innovators from around the country who come, and sometimes we have a topic, and there might be a little bit of didactic component, but mostly these meetings are these implementation leaders sharing what's going on for them. Maybe they tried a strategy that was really successful for the pharmacy intervention, or maybe they're struggling with how to document what's happening in care delivery. And so they bring up their struggle, and other people say, "Oh, hey, this is what I'm using. This is what works." So it's become this community of practice where we all learn from each other.

So I think what we've learned is that, yeah, having open source materials and creating an environment for implementation leaders to learn from each other has really helped get this out there. Also, we've learned what some of the facilitators and barriers are in terms of implementing the Care Ecosystem. You absolutely need a passionate local clinical champion. You can't just push this intervention successfully onto a health system. It needs to come from within. You need somebody who's really excited to do this. You need buy-in from the leadership. You need to have a good team-based infrastructure. You need to have, of course, these navigators who are really good at building relationships.

But I think there's a lot of challenges too that we've learned about. Starting a whole new clinical program usually takes longer than expected. Sometimes it takes a little while to get the appropriate referrals. Staff turnover is a challenge that programs face. And long-term financial sustainability is, of course, one of the big barriers as well as the initial startup costs. Even if you have a sustainability plan, you need extra funds in the beginning to get going.

So yeah, we've learned a lot from implementation, and it really has taken off and spread in a lot of different environments. One of the key lessons is that it's not one size fits all. So we really rely on these clinical innovators to adapt the Care Ecosystem to their health system or CBO and patient population.

Lauren Gerlach:

In the recent study that we mentioned in the intro, you placed kind of collaborative dementia care and lecanemab, one of the new anti-amyloid treatments, in the same economic model. And I was hoping you could tell us a little bit kind of what motivated that comparison.

Katherine Possin:

This is the most exciting time to work in Alzheimer's science and healthcare. I mean, we've had huge breakthroughs. So yes, we've learned a lot about how to provide good care, and the Care Ecosystem is one example of that. But wow, with the new diagnostics, the blood-based biomarkers, the PET imaging, and then now these disease modifying therapies, so exciting.

But how do we implement them all into practice? And health systems have limited resources in dementia care, and are often faced with making choices. So on one hand, I see these new treatments as an opportunity to just rebuild the way we provide care for people with Alzheimer's and related diseases, shifting from a diagnose and adios model that's been prevalent in neurology to more longitudinal treatment and care that addresses medical and social needs. So this is the ideal vision is like, wow, this is the moment, the moment to just rebuild it all and make sure it works for patients and families.

But unfortunately, the way it's often playing out is health systems are saying, "We can't do it all. Our staff, our doctors, we're stretched thin. We need to make choices. Should we do the treatments? Should we do better care?" And that choice felt very uncomfortable to me. So I thought, well, let's just put the new treatment and the care model apples to apples, and just look at what kinds of benefits and costs do they each have. And that was what motivated the study.

Matt Davis:

Can you walk us through the basics of the study?

Katherine Possin:

Sure. So we were trying to answer a very basic practical question. If you're deciding how to invest in dementia care, how do different approaches compare? So we built an economic model that followed people with Alzheimer's disease over the course of their illness, and we compared four scenarios. One was usual care. One added collaborative dementia care, like the Care Ecosystem. One added lecanemab. And the fourth combined collaborative care and lecanemab.

And then we asked some key questions, how long do people live? How much time do they spend living in the community versus a long-term care facility? What's their quality of life and what's the impact on family caregivers? And what does each approach cost the health system? And we included not only the cost of delivering interventions themselves, but also downstream costs like hospitalizations, ED visits, long-term care, and the monitoring and infusion costs associated with lecanemab.

And finally, we compared those health outcomes and costs to estimate value. So that is how much health benefit each strategy produces for the resources it requires. And that's really what cost effectiveness analysis is designed to do. It's not asking whether a treatment works, it's asking whether it provides good value relative to the other ways that we could provide improved care. So we weren't asking, is lecanemab good? Is collaborative care good? We already have evidence that both can help. The question was, if you were designing a dementia care system, where do you get the biggest improvements in people's lives for the money you spend? And that's the question that policymakers and health systems have to answer every day.

Lauren Gerlach:

So what were some of the headline findings?

Katherine Possin:

We found that collaborative dementia care, like the Care Ecosystem, increased quality adjusted life years, helped people remain in their homes longer, and actually reduced overall healthcare spending by delaying costly events like nursing home placement and reducing hospitalizations. In health economics, we call that dominant because it both improves outcomes and saves money.

Now, lecanemab also improved health outcomes. It modestly increased quality adjusted life years and extended both survival and time spent in the community. But those benefits came with substantially higher costs, largely because of the drug itself and the infrastructure needed to deliver it safely. Under the assumptions in our model, it costs roughly 200,000 to $250,000 per quality adjusted life year gained.

So the really interesting finding though, in my opinion, was that the best health outcomes came from combining the two interventions. Collaborative care and lecanemab are not competitors. They address different aspects of Alzheimer's disease. So one is a disease modifying therapy and the other helps patients and families to manage the many medical behavioral and caregiving challenges that accompany dementia.

So I don't think the takeaway from our study is that we should choose one or the other. I think the key takeaway is that we're building a dementia care system, and collaborative care is an incredibly high value foundation because it benefits almost everyone with dementia and it pays for itself. Then for patients who are appropriate candidates, disease modifying therapies like lecanemab can be layered on top of that foundation. That's how I think about the future of dementia care.

Matt Davis:

And what'd you find when you scaled this approach to the entire United States?

Katherine Possin:

Yeah, absolutely. I mean, that's where we see the most benefit. In fact, the effect sizes for collaborative dementia care are not huge, but the benefits are huge once it is scaled out to the whole population. So when you scale it out to the whole population, we really find that the Care Ecosystem, it's benefiting many more people because many more people are eligible for collaborative dementia care, and it's also saving money.

Whereas the lecanemab is a smaller slice of the population is eligible, but it can extend life by slowing the disease. And in doing so, you get more quality adjusted life years and delay time into nursing home placement as well. So I think that when you scale it out is when you really start to see the complimentary benefits of these two approaches. So the future of dementia care isn't choosing between better care and better treatments. It's finding ways to deliver both.

Lauren Gerlach:

You certainly have made a compelling case for this. What do you think would still need to change for these programs to become more widely available and sustainable?

Katherine Possin:

Yeah. So the GUIDE Model is a huge step forward. I know you guys had a podcast on the GUIDE Model, so if people are interested, you should check that out. It's a huge step forward because Medicare is paying for care that considers and addresses the needs of the caregivers in dementia, and is sort of facilitating this continuous relationship-based care. So it's really exciting. But I think there's still a lot more that we need to do to make this kind of care optimal and accessible to the families who need it.

So we need to study how the GUIDE Model's working and the access to it. I hear about some of the barriers, both the good things, but I also hear about a lot of barriers associated with the GUIDE Model that we need to understand and that we need to address to make this easier to deliver. We want to make sure that the reimbursement is adequate for health systems and community-based organizations that are doing this.

So I think those are some of the next steps. I also think that we need to look at how can we optimize the care without sacrificing the components of it that are critical for its effectiveness? And I worry about that. I worry that this type of care could turn into a checkbox style of care when in fact it's the relationship with the navigators that is so key. So if we're pushing our navigators to have bigger and bigger caseloads, we may lose what is really important here. So we do have a lot more work to do in making this type of care accessible to patients and families who need it, and making sure that we're delivering it in a way that is effective.

Matt Davis:

So what's the difference between GUIDE and the Care Ecosystem?

Katherine Possin:

Well, GUIDE is based on a lot of evidence of what dementia care works. And some of this evidence, or a lot of the evidence comes from healthcare innovations awards that were funded by CMMI. So Care Ecosystem is one of those programs. There's also some fantastic programs at UCLA, and Indiana, and John Hopkins that provided some of the evidence base for this model.

When you look at what GUIDE requires and you look at what is Care Ecosystem, there's a lot of overlap. In fact, there's a lot of overlap between GUIDE and all four of those programs I just mentioned. But what's different, I would say, is that GUIDE also requires a couple of things that we didn't include in the Care Ecosystem research. And those are these respite contracts, the home visits, those are the main things. And so I can say the Care Ecosystem was effective without those components. And I think those components are really exciting, but we actually don't know if they have added benefit. And we do know that they are creating some challenges for health systems trying to implement the program.

But mostly what's in the model of the care, the supporting the caregiver, bridging medical and social needs, telephone based support, ongoing connection to dementia specialists, attention to medications, and a lot of the components that you see in GUIDE really overlap beautifully with what is in the Care Ecosystem.

Matt Davis:

You mentioned a few really important resources. So I'm just curious, for a health system or a community organization that's interested in implementing the Care Ecosystem, how would they go about it?

Katherine Possin:

The first thing to do is to check out our website, so the Care Ecosystem UCSF website, and look at all of the tools that we have. Read our recently updated toolkit, look at the training program, the care protocols. And the toolkit will kind of walk you through thinking about is this program right for your setting, and what do you need to have in place to get started. And if you're interested in trying to make this work, then I would say come to one of our implementation meetings so you can hear from these experienced innovators who have been implementing this type of care and also ask your questions so you can learn directly from the people with boots on the ground and be part of the community.

And I think keep in mind that if you are thinking about implementing a program like this, you don't have to reproduce the UCSF program exactly. There are core elements that we think are important to preserve, but you can adapt the model to your own workforce, your own health system, community resources, patient population. I think that's key to successful dissemination.

Lauren Gerlach:

So what's next for the Care Ecosystem?

Katherine Possin:

Well, we're at an exciting point because the question is no longer whether this kind of care can work. We've demonstrated the clinical benefits and we've learned a tremendous amount about implementation. And now there's mechanisms like GUIDE that create an opportunity to bring this approach to many more people. So the next challenge is really optimization, scale, and equity. How can we deliver the care most efficiently without sacrificing the elements that are critical, as I mentioned?

And also, how do we make sure that high-quality dementia care isn't available only to the people who happen to live near an academic medical center? This is one of my concerns about GUIDE is because of some of the requirements in GUIDE that require going into people's homes, some people who live further from dementia specialty centers may be excluded. For example, people living in more rural areas where it's hard to set up home visits or respite contracts. So we need to really take a look at are the people who need this care the most actually getting access to this care? And then of course we need to think about how do we build a workforce that can provide this type of longitudinal support because the needs are huge.

So I think the future is going to be about integrating different kinds of advances rather than treating them as competing approaches. We will have even better disease modifying therapies, I think. It's just such an exciting time in the therapy world for dementia. And potentially we'll have more useful digital tools and AI supported care. We're really on the forefront of so many exciting changes. And we'll have better ways of managing symptoms and supporting caregivers.

But none of those eliminates the need for a human-centered care system around the person and the family. We can't replace that human centered care with AI, I don't think. But we can make the care more efficient, I think, and reduce some of the administrative and charting and burdens on our team. So I think one of the things I'd like for our listeners to remember is that dementia care is not just about treating what's happening in the brain, it's about helping a person and a family live as well as possible with the disease. We have increasingly effective tools to do that, and the challenge now is making sure that people can actually access them.

Lauren Gerlach:

Beautifully said. Anything else that we haven't covered today that you want our listeners to take away?

Katherine Possin:

Just want to say thank you everyone to listening today. I think if you're pursuing a career in Alzheimer's and health systems, this is a really exciting time to make a big impact for patients and families. We now have the tools to provide good care and treatment, and we need to figure out how to implement them to meet the needs of these families.

Lauren Gerlach:

Kate, thank you so much for joining us today.

Katherine Possin:

Thank you for having me. It was a pleasure to speak to you both.

Lauren Gerlach:

And thanks to all of you who listened in.

Matt Davis:

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.