Healthcare at Home for People Living with Dementia

November 14, 2022

This week we feature a recent study by Katherine Ornstein and colleagues that was published in the Journal of the American Geriatrics Society. Dr. Ornstein studies family caregiving and the home-based clinical care. The study used Medicare claims linked to the National Health and Aging Trends Study to estimate the degree to which people living with dementia use health services from home. We’ll discuss what exactly home-based health services are (and how they are typically categorized) and discuss the role these services are expected to play for people living with dementia.

Transcript

Matt Davis:

When I think of healthcare, it brings to mind events like going to the doctor's office, visiting an emergency department, or perhaps staying overnight at a hospital. What I don't necessarily think about is how each of those require mobility and transportation. I mean, I have to get to the hospital or clinic, have to find parking in some massive parking garage, and large healthcare institutions can be really confusing to navigate. And then there's exposure to some weird foreign environment, beeping monitors and paper covered cold exam tables. And at times, a fair amount of just waiting.

Matt Davis:

For older adults living with dementia, accessing routine medical care can end up being quite burdensome and disruptive to their normal daily routine. So much so that there's even concern that older adults living with dementia may avoid going to the doctor altogether, thus miss important routine in preventive care. In earlier eras of medicine, it was more common for doctors to visit patients in their homes. Given the difficulties I just described about making it in for a doctor's visit, along with older adults' desire to age in place and remain independent at home for as long as possible, there is growing interest in healthcare delivery moving back towards treating patients at home.

Matt Davis:

In fact, the centers for Medicare and Medicaid services expect expenditures on home care services to reach over 200 billion by 2028. No doubt, in addition to older adults preferring healthcare come to them, it's also gotten medical entrepreneurs very excited. In this episode, we'll speak with a researcher who is among the first to examine use of home-based clinical services among older adults living with dementia. We'll talk about what home based care is and what she discovered. I'm Matt Davis.

Donovan Maust:

I'm Donovan Moss.

Matt Davis:

You're listening to Minding Memory.

Matt Davis:

Today. We're joined by Dr. Katherine Ornstein. Dr. Ornstein is a professor at Johns Hopkins University, appointed in the School of Nursing, the Department for Health Policy and Management at the Bloomberg School of Public Health, and in the division for geriatric medicine and gerontology. She also directs the Center for Equity in Aging. Her research focuses on issues regarding family caregiving and social determinants of being home bound among older adults. She's used a wide variety of different types of data in her work and is an epidemiologist by training. Dr. Ornstein's here today to tell us about one of her recent studies that examined the use of home care among a large cohort of older adults living with dementia. Katherine, welcome to the podcast.

Katherine Ornstein:

Thank you so much. I'm very excited to be here today.

Matt Davis:

Dr. Ornstein was the lead author on a study titled Medicare Funded Home Based Clinical Care for Community Dwelling Persons with Dementia: An Essential Healthcare Delivery Mechanism that was published in the Journal of the American Geriatric Society, what many people refer to as JAGS for short. The study used data from the national health and aging trend study linked to Medicare claims. We'll make sure to include a link to her study attached to this episode. So to start things off, Katherine, in your paper you use home based clinical care as sort of like an umbrella term that captures several types of services. Could you walk us through what those services are?

Katherine Ornstein:

Sure. And that's actually a really important point of clarification, and my co-authors and I spent a lot of time carefully choosing that language, because really our goal was to capture clinical services happening in the home. So not things like family caregiving, which is also happening in the home, but really billable medical care. So we looked at four different categories ultimately, again with this umbrella term of home based clinical care.

Katherine Ornstein:

So skilled home healthcare is probably the most recognized, right? And the most pervasive kind of home based clinical services. Which is basically care provided on an episodic basis by home health agencies to people who are home bound, who have need for skilled services, i.e. Nursing care, physical therapy, OT in the home. So that's generally, it requires a physician referral and it's initiated in a postacute setting or in the community.

Katherine Ornstein:

Next we looked at home based medical care, and that we thought of as physician, physician assistant, or nurse practitioner led care, either primary or specialty care that's provided also to adults who are home bound in their homes. And we also looked at what we ended up categorizing as two other types of services within this umbrella of home-based clinical care, which are podiatry visits, which are home based visits for diabetic foot care, things like that occurring at home, and a variety of other home based clinical services, including imaging, behavioral health services, actually, PT services even, that are covered essentially via Medicare part B. And by defining home based services, another important point is we looked at the home as not just private residential homes like where we live, but also non-nursing facility residential settings. So places like an assisted living or a group home. Those we also considered homes, but not nursing home care.

Donovan Maust:

Can I ask how did podiatry get its own category? And did you know ahead of time it was going to be its own thing or was that after looking at it that you saw that there were a lot of podiatry visits?

Katherine Ornstein:

That is a great question. And I was hoping you'd ask about podiatry, because this was sort of a surprise essentially. I mean I'm not a clinician, but I work very closely with providers who do home based care, and so we are very aware of podiatry services that occur in the home. But we really didn't recognize how prevalent it was until we started looking at place of service and who was billing for what. And in doing that, when we realized that we were for the first time trying to just think about essentially a taxonomy of home based clinical care, podiatry seemed to stand on its own and it was different. We really thought it was different. I think my colleagues who are physicians, I think they were like, "This is different." And there was enough of it that we sort of put it in its own category.

Katherine Ornstein:

I think it's something I'd love to learn more about, and I think it's actually really important that it's stood out like that. Because I know at least as an epidemiologist who studies aging working very closely with geriatricians, we know very little about podiatry relative to dementia care and how important it may be. So it really is I think an interesting area for the study.

Matt Davis:

When you're among the first to go about studying something that people haven't looked at perhaps as deeply as other things, were you ... I mean, something you said kind of led me to believe that maybe you were trying to figure out how to categorize these different services. Is that true, or is there kind of defined service categories already, or were you really figuring this out as you went?

Katherine Ornstein:

No, I think like everything really in academic medicine there's really sort of silos, essentially. And so there's researchers that look at skilled home health, and they can go into Medicare claims data and look at home health. Colleagues, myself and others, we've studied home based medical care because that is a growing area of physician, nurse practitioner services. And so there has been codes where we've looked at this as well.

Katherine Ornstein:

But what we were trying to do was actually take a bigger look, because these things are not occurring in isolation. We study them often in isolation and we think about them. But from the patient's perspective, there's a lot of people in their home providing services. So I think our goal was to really go broader and to try to see ... And literally when you're looking at billing services for home based medical care, there's a place of service code, right? So you can actually see it.

Katherine Ornstein:

And so you can actually say, "Well, what else is being billed for in the home?" And in fact we learned a lot, and we're not new to the field. My co-authors have worked in this. Again, clinicians doing this, we learned a lot because with this is a national sample. So practices are different in different places. So really we hope in doing this, and we have another work that my co-author Claire Ankuda is leading where we're actually trying to see, can we actually define this so that other researchers start to look at home based services more broadly?

Matt Davis:

Make sense, take that empirical look initially.

Donovan Maust:

So if I recall correctly, all of the data that you all used, this was pre-pandemic. In the pandemic era though, there's been a lot of interest in telehealth services. Is that in any way in the home care umbrella at all, or any of the visits that you were looking at, were any of those telehealth visits?

Katherine Ornstein:

No, it's a great question. And these data as you correctly point out, are collected prior to 2020. So we do not simultaneously assess telemedicine as a type of care provided to individuals in the home, which obviously expanded during COVID-19. And it's likely an important aspect of care for this population as well as non-home bound, right? It's changed for all of us. But I think this is something we'll need to look at moving forward, but these data do not include that. In part, because we don't even know what's going to happen with that, or the evolving pandemic. And also I point out that there are other services that we do not include here that are at home, such as hospital at home services, which is of acute medical care provided in the home. And again, that has also changed with COVID. There's a waiver that allows us to provide more of those kinds of services covered through Medicare. So there are definitely things that we want to keep looking at. And I think this, I hope will be evolving to serve the population in need.

Matt Davis:

So just coming back to your study. So on our podcast we've had the opportunity to talk with a couple different people that have used the health and retirement study, but I think you might be the first coming on that it's used this national health and aging trend study, or what people call NHATS. Can you tell us a little about that data set?

Katherine Ornstein:

Sure. So NHATS is a nationally representative annual longitudinal study of Medicare beneficiaries aged 65 and older, and it began in 2011. So that's much later than HRS started, essentially. And it's in person annual interviews. So they're conducted with study participants or with proxy respondents, which is really important in this study as well. And participants are asked detailed questions about daily activities, medical comorbidities, socioeconomic status, and the home environment. And like HRS, we can link NHATS to other data. In this case, we linked it to Medicare claims.

Donovan Maust:

As somebody who's worked with both HRS and NHATS, can you speak just a little bit to what you perceive as kind of relative advantages or disadvantages when you compare the two?

Katherine Ornstein:

It's like asking me which one of my children is my favorite?

Donovan Maust:

Which is your favorite child, I know.

Katherine Ornstein:

So NHATS has a distinct advantage over HRS in that it's annual. So HRS is conducted every two years. NHATS is every year. So the reason that's really important for the population I'm interested in is a lot changes every year when you're dealing with an older patient with dementia, and their functional ability, and who's supporting them. So two years can feel like too long for many things. Also, NHATS has a linked caregiver study, the National Study of Caregivers, also called NSOC, where caregivers are interviewed. HRS does not have this. And again, if you study older adults with dementia, you want to know what's going on with their caregivers. And what's really cool too, is they don't just interview one caregiver they interview up to five caregivers for an individual. So it's a huge advantage in that way.

Katherine Ornstein:

And also for my research in particular, NHATS ... Really conceptually, there's more of a focus on disability in NHATS, and they ask specifically about how often individuals leave the home and who assists them. And I've used this to help identify who is home bound, which obviously matters for home based care delivery. HRS doesn't have that measure, so that's generally why I prefer it in studying home based care.

Katherine Ornstein:

But on the other side, HRS, it's been around a long time. So if you want to see things that are changing, if you want to follow people, you can see it. And it also starts with younger individuals. I mean, I probably don't ... You've had other guests talking about HRS here and you're at Michigan, so you know. I don't have to tell you guys, but it starts with younger, adults, over 50. So that's an advantage. Also HRS was designed by economists, so there's better data on finances and wealth that really just is not as good in NHATS.

Katherine Ornstein:

But there's a lot we could have done here that we also could do in HRS, and actually we are doing some similar work in home based care delivery using HRS as well. I would also just say, just for people interested in working with new data sets, one thing I like about NHATS is in some ways it feels cleaner because it's newer. They learned from HRS, so they kind of fresh start. So those of us who have been in there and looked at the [inaudible 00:15:26], there's something cleaner in that way, just because it starts ... It had 20 years it doesn't have to include, so it's always easier in that way.

Matt Davis:

Those are some really important differences. And you mentioned sort the difference in terms of the time gaps and all that. But I'm curious if you talk a little bit more about how specifically dementia is identified in NHATS, and I guess just the mechanism by which that's done, compared to HRS as well.

Katherine Ornstein:

Yeah, and that's really important. And both studies are so really important for studying older adults by having algorithms to really try to look at dementia and population. And I do a lot of work with claims data and it's really different if you're just looking at Medicare claims to see if somebody has a dementia code. That's really different, it's problematic in different ways. So NHATS has an algorithm that they use and they basically will class ... You can use it to classify individuals of not having dementia, having possible dementia, or probable.

Katherine Ornstein:

Info is taken from different sources, simply reporting that a doctor has told you that you had have dementia or Alzheimer's disease. They use the ADA dementia screening interview, which is administered to the proxy respondents, and so it's an eight item instrument. And then they actually do cognitive tests, evaluating memory for the individual directly. So orientation and executive function. And again, what's really nice ... And again, they use this three group classification. What's really nice is NHATS was not created in a vacuum. They learned a lot from HRS. So that really, they bring that to the table, I think. So that we can ... Again, it's not perfect in any way, but I think we feel reasonably good and certainly better than simply using a claims based approach to dementia identification.

Donovan Maust:

So then when you think about the outcomes that you were looking at in the Medicare claims data, so home based clinical care, which files did you look at, how did you go about identifying the care and the types of care?

Katherine Ornstein:

So skilled home healthcare, Medicare has this very nice home health file. So we kind of went in there. And I really only the last year or two started looking at these data. I know other researchers have spent a lot of time there. But we really looked at any home healthcare, but you re-certify home healthcare, you can have different episodes, you can sort see what's being provided. There's a lot of details there that we did not get into for this paper, but we are actually looking at in more detail.

Katherine Ornstein:

And then to identify home based medical care, we really looked at specific ... The [inaudible 00:18:39] healthcare common procedure codes to identify the provision. And this is what's actually people use for billing. We went in there, found them. And then any carrier file claim that occurred in the home we pulled out. So literally place of service we examined where things were happening, and then we looked at the provider type to see if it was a podiatrist. So we sort of created an actual approach to identifying home based care delivery using the claims.

Donovan Maust:

And if you could give us kind of the abstract-worthy kind of high level overview of the findings, what did you find? What stood out to you?

Katherine Ornstein:

So basically almost half of individuals with dementia are receiving some kind of Medicare funded home based clinical care, per year. Not lifetime, but in a year they are getting it. So almost half. That also means that almost half are not. Across all services we examined, so the skilled home healthcare, home based medical care, podiatry, it was much more common among patients with dementia. They are getting this home based care.

Katherine Ornstein:

And it's interesting. I mean, home based medical care is pretty rare still. It really is not available everywhere, yet among patients with dementia, 14% are getting home based medical care. That's not nothing. That's pretty serious. Podiatry is also not uncommon among patients with dementia. And again, skilled home healthcare, we see much more common among patients with dementia. And then we also saw services varied based on where people lived, based on who they were. So not everyone with dementia gets this care, but a lot of people are getting it.

Matt Davis:

So how common is the use of home base based care among people without dementia, just as a baseline?

Katherine Ornstein:

So if we said home based medical care, for example, it's less than 2%.

Matt Davis:

Oh, wow.

Katherine Ornstein:

Yeah. So it's pretty rare because we don't have that much of it, essentially.

Matt Davis:

And you also looked at service use by subgroup, right? What did you find with those analyses?

Katherine Ornstein:

Well, when we looked at who was getting home based care, I think some of the things that were really highlighted, I'd say there's two factors that really came out. One is we really saw an under-use among patients who are Hispanic or Latino. We really are not seeing home based medical care in this population. Which is actually particularly problematic, because this is the fastest growing subgroup of home bound patients that we're seeing. So now we don't know why there may be limited use, but we can imagine if there's a need for interpreters in these settings, care referral patterns, and simply the caregiving environment. As well as just preferences of an access.

Katherine Ornstein:

And we also saw differences in basically more care in metropolitan areas. Again, that makes sense, because we know the types of areas where home based primary care practices in particular thrive, within more urban settings. But we also are seeing more for individuals who are living in assisted living or other kinds of residential care facilities. So we really saw differences there.

Donovan Maust:

When you think about the providers of these services, to what extent are these people who ... Maybe it was the individual's office based clinician who's coming to see them at home. Do you have a sense if that's happening or are these completely different providers?

Katherine Ornstein:

Yeah, that's a really good question. I would say we really have to do more research on that. But we had originally ... In other work we've done, we've limited it to multiple visits per provider just to make sure we're not getting that one off visit where a provider stopped in on one of their patients, but doesn't really do home visits. But we really need to do more research on that. But I think the reality is people have to know how to bill for this, and how to do this, and how to get the other services in place when they're providing care this way. So really what's growing are our practices that are using ... Primarily it's actually nurse practitioners who are leading this in terms of the home based medical care. It's not physician led model.

Donovan Maust:

To what extent do you think that supply is really the main limiting factor here?

Katherine Ornstein:

I think that's a really important part of this. In this analysis, we used fairly crude markers of metropolitan indicator and just region. But just a key driver is availability of services. And we know skilled home healthcare, by the way is more ubiquitous. So people have access to that and we see that. The differences are in the other types of services that we looked at. And simply reimbursement for care doesn't allow it to thrive in areas where you don't have the patient population. And I think this is why we're seeing far higher rates among those living in residential facilities.

Katherine Ornstein:

You want more favorable geographic factors, essentially, to improve financial sustainability. So we're not set up to be able to see people unless it's efficient. And this is consistent, there's other work done really suggesting that in rural areas there's just limited access to home based medical care. Again, skilled home healthcare, we are seeing being more available. But again, that is something that's been there for a while. That's sort of been set up within Medicare that exists, again originally really in a post acute care model.

Matt Davis:

Can I just ask one question related to podiatry one last time? I promise this is the last. So this is probably where clinical, but I guess based on ... I'm assuming that you worked with clinicians and Donovan as well, you should chime in, is it at all surprising that people living with dementia need a lot of pediatric care? Is that surprising at all to anybody, or not really?

Katherine Ornstein:

So I think it's not surprising if you talk to clinicians that are seeing patients with dementia, who can't get out, who can't ... It was great to see that podiatrists are doing this, but I think it might speak more to a financially sustainable model in terms of their reimbursements and how they're doing this. It seems like getting podiatry care at home is something that can be done, it looks like. It doesn't look like an unreasonable thing. But I would love to study this more. This was one of the most interesting things. And I think we know that podiatry interventions can help with falls. There's a lot there that's important. And is this something that's sort of under utilized? And when you think of even social isolation, podiatrists are going in, they are trained professionals, they're there keeping eyes on patients. And I don't think the geriatric community is that aware of it.

Matt Davis:

I think I think of diabetes, that's why I was just surprised with dementia, but yeah.

Donovan Maust:

When you think ... Not to continue picking on podiatrists, but also other types of medical services, is the reimbursement for the service in office setting versus home setting different, do you know? The amount that they get reimbursed for the same thing?

Katherine Ornstein:

I haven't looked at it for podiatry. I know of when we look at the differences for just home based medical care visits, it's not very different. It certainly does not cover the travel time to make it worthwhile by any financial model that I can possibly think of. But I'm not sure, because you know what we did see for example, and again this is why it needs to be studied. Because we went in there and we saw that for example, physical therapy was being billed and that's not part of skilled home healthcare, physical therapy. So we think of physical therapy as being part ... And it is. But there's also other kinds of physical therapy that's separate that is billed in the home.

Katherine Ornstein:

So potentially it would be interesting to see what the payment structure looks like there and what are the incentives. And again, this is Medicare fee for service, right? So we're not even thinking of different kinds of payment models that have different incentives potentially, right? So we don't know. And behavioral health, we saw billing for. I think we can certainly imagine from the context of dementia, how that could be so useful, but it's not happening much, but how is it happening, is it worthwhile? I could only imagine it certainly could be for the patients and the caregivers to provide such services in the home.

Matt Davis:

This question's probably too much in the weeds, but you mentioned fee for service. I mean that's how you identify healthcare use in claims. It must be complicated, right? When you're using NHATS and coming from that forward in time, did you have variable follow up based on people being enrolled in fee for service that were kind of in for different amounts of time in the study? The follow up time period, I guess.

Katherine Ornstein:

Right. So we limited it to individuals that we could follow for at least one month in fee for service so that we could see. So in some ways we are conservative, potentially under reporting the use of any kind of home based clinical care. But generally we don't see too much interruption back and forth per month in that way, we don't see too much of a mix that way. But we wanted at least one month, because we also did not want to lose people who died because that's interesting too. And I'd also point out there, we did not include home hospice here, which obviously is home based clinical service. We didn't include it because it's kind of different relative to sort who would be eligible for hospice care. So that's something we're also looking at in this population, but I just want to sort of point out that's obviously another home based service.

Matt Davis:

So you demonstrate just how often these services are used among this population, but just kind of thinking forward, I mean that's where we start, right? Are people starting to think about outcomes and cost implications of people who get these services at home versus those that perhaps don't?

Katherine Ornstein:

Yeah. And there's been a lot of observational studies for decades that have provided some, I would say pretty strong findings about improved outcomes and certainly reduced cost. And the independence at home demonstration project also finds positive outcomes related to cost. In terms of ... RCTs have been conducted. The VA has a very impressive home-based primary care program. There's older studies there, but also very positive. There was an RCT conducted in the past five years on home-based medical care, not yet published, unfortunately underpowered, but still showing some evidence for some increased satisfaction and so on.

Katherine Ornstein:

But this is really ongoing work of really trying to see ... And again, it's hard because we don't have enough of it. And it's also hard because the populations served are very sick and there's a lot of mortality. So it's sort of a challenging group to really look at outcomes. And I think COVID has reminded us that sort of the home environment is pretty important. I think there's even more of a concern for where our long term care system is. And I think the COVID experience is really pushing us more into home, into the home environment and really recognizing that we need to do more.

Katherine Ornstein:

And it's not going to just be telehealth. Telehealth, there there's a lot of literature now in home based care really suggesting that while telehealth has been very important, it can't do everything and certainly not for every patient. So I think we really need to invest more in home based care. And step one is to understand what's happening and really recognizing what's happening in the home. So that's what we're trying to do, so stay tuned for more.

Matt Davis:

Katherine, thanks so much for joining us.

Katherine Ornstein:

Thank you.

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 CAPRA.med.umich.edu, where a full transcript of this episode is also available. On our website you'll also find links to our seminar series and data products we've created for dementia research.

Matt Davis:

Music and engineering for this podcast was provided by Dan Langa, more information available at www.danlanga.com. Minding Memory is part of the Michigan Medicine Podcast Network. Find more shows at UofMHealth.org/Podcast. Support for this podcast comes from the National Institute on Aging at the National Institute of Health, as well as the Institute for Healthcare Policy and Innovation at the University of Michigan. The views expressed in this podcast not necessarily represents the views of the NIH or the University of Michigan. Thanks for joining us, and we'll be back soon.

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