Dr. Robert Applebaum is Professor of Gerontology in the Department of Sociology and Gerontology and Director of Ohio Long-Term Care Project at the Scripps Gerontology Center, Miami University, Oxford, Ohio. He holds degrees from Ohio University (BA), the Ohio State University (MSW), and the University of Wisconsin-Madison (Ph.D.). He has been involved in the development and evaluation of long-term care programs across the United States for more than thirty years. he has worked with more than 25 states on innovations in long-term care service delivery, and completed a series of state and national studies on long-term services and supports.
Episode Description
According to AARP, 70% of Americans who live to be 65 will need long term care at some point, though what kind of long term care depends upon an individual's physical, emotional, and mental health. A project at Miami University has been studying long term care and that's the focus of this episode of Stats and Stories with guest Bob Applebaum.
+Full Transcript
Rosemary Pennington
According to AARP, 70% of Americans who live to be 65 will need long term care at some point, though what kind of long term care depends upon an individual's physical, emotional, and mental health? A project at Miami University has been studying long term care and that's the focus of this episode of Stats and Stories, where we explore the statistics behind the stories and the stories behind the statistics. I'm Rosemary Pennington. Stats and Stories is a production of Miami University's Department of Statistics and media, journalism and film as well as the American Statistical Association. Joining me is regular panelist, John Bailer, emeritus professor of statistics at Miami University and our guest today is Bob Applebaum, director of the Ohio Long Term Care Research Project, and Professor in the Department of Sociology and Gerontology at Miami University. Applebaum’s research interests include Long Term Care Quality Assurance, program planning and evaluation, and health and social welfare policy. He's published numerous journal articles examining aspects of long term care and elder care. Bob, thank you so much for joining us today.
Bob Applebaum
My pleasure.
Rosemary Pennington
Just to get started, what exactly are we talking about when we talk about long term care?
Bob Applebaum
Okay, great question. You know, if you think about your day to day life, you get up in the morning, you get dressed, make breakfast, go to work, you're performing what we call in our trade, the tasks of daily living. And those tasks are something that we don't think about day in and day out. But when you can't perform those tasks by yourself, then you need long term care. And it's just that simple. And when we try to determine who needs long term care, it really is based on the functional ability to do those day to day tasks.
John Bailer
You know, so popular, there are these activities of daily living that we often hear about, and there's instrumental activities of daily living. Could you give us a couple of examples of each?
Bob Applebaum
Sure. And since we're in Stats and Stories, I'll even start with a little stat part of this.
John Bailer
Oh, man, Be still my heart.
Bob Applebaum
So essentially, the ADL scale that John mentioned, the activities of daily living, were actually developed by a physician named Sid Katz, in Cleveland, Ohio, in 1963. And he was watching people who were recovering from a stroke. And what he saw was, the first thing they could do in recovery was to be able to feed themselves. And the next thing that they could do was they could actually get from their bed to a chair. And the next thing they could do would be to make it to the bathroom. And then the last two things they could do or dress themselves independently, and bathe or shower themselves independently. And that formed what became the ADL scale today that is used to determine who needs to go to a nursing home, or if the state will pay for you to go to a nursing home. And just for a little more geekiness. The ADL scale is a Guttmann scale, which essentially means if you're going to be impaired and one thing on the ADL scales is bathing. And if you're somebody that's impaired in eating, you're probably going to be impaired in everything.
John Bailer
So how does that happen? So there's a quick follow up. I also heard about this thing like this instrumental, right? How does that extend this idea?
Bob Applebaum
So the instrumental activities of daily living are kind of a next level, if you will. And they're things like, can you go to the grocery store and shop for yourself? Can you clean your house? Can you manage your money? Can you do things like that again, you may be able to continue to bathe yourself, but maybe you can, you can no longer take public transportation or you can no longer drive. So the IDL tasks are the next level up, if you will. And generally for people who really need heavy long term services assistance, we focus on those ADL tasks. But certainly for those of us that have loved ones in the community, they begin to need help when they can't do those ideal tasks.
Rosemary Pennington
There has been a lot in the news about the aging population and how they're more people living longer. And I wonder if over the course of the work that you've been doing, whether you have seen a change in how people are thinking about long term care, whether their people are more aware of the need for it, or if you have any sense of sort of if that there's been a shift in that at all.
Bob Applebaum
I'll give you a yes and no for that. I think on the plus side. For many years, most older people if you ask them about long term care, they would say yes, my Medicare will cover it. And it doesn't it never has. And I think today, more older people know that Medicare is not the answer. The best part of that is that it's still very difficult. And most people don't plan for long term care if I, if I asked John, do you think someday you will die? He'll probably say. And, and, and most people will recognize and so when we get to a certain age, that we have children, we buy life insurance, because we know we're not going to avoid death. But if I asked John, do you think someday you won't be able to take a shower by yourself? Do you think someday you won't be able to cook your own meals? Most of us can't imagine that. And so we don't plan for it. You know, it's funny, the Department of Aging some years ago, had us do a project because they came up with an idea it was called own your own future. And they were going to free trainings around the state to help people plan for long term care. Nobody came. Oh, and so they hired us to find out this is so obvious, why aren't people coming? And my colleague, Kathy Magoo, and I did focus groups across the state. And the cover title of her report, kind of set it off. It was a 85 year old guy from someplace in Ohio. And he said, quote, I'm 85, I'm still using my power tools. Why would I think about long term care? So Wow. Yeah.
John Bailer
You know, so Rosemary started with this, this statistic of 70%, of age 65 or older, needing Long Term Care, can can you kind of tie that 70% to this, this ADL, and then maybe we can circle back to some of what you've just said about kind of the thinking that people have?
Bob Applebaum
Sure. So first of all, the question really starts with what is long term care? Because there's, how many folks will have some type of IDL, or ADL disability. And what we know is, particularly if we focus on the ADL disability, that if we look at folks 65 Plus, of course, there's a lot of variability. So in the age group, 65 to 70, we're talking about 2% of the population in that age group that has an ADL disability, so very small. But if we go to the 90 plus group, now, you're probably talking about 55%, still not 100. So even at 90 Plus, a lot of people don't need long term care. So first of all, what is long term care? We used to think of nursing homes as long term care. In fact, the first book I ever read in grad school was called last Home for the agent. Some people think it was the only book I read in grad school. That's a different coloring. Yeah. So in that book, The argument was once you went to a nursing home, that's where you live the rest of your life. Today, that's not true, because we have had major changes in our healthcare system, so that many people go to nursing homes now for short term rehabilitation. So in fact, we've done three studies where we followed everybody that walked into an Ohio nursing home, and we've done it three times. The first time we did it was in the early 1990s, because we heard about the short term care. And what we found was that for everybody that walked into a nursing home, after three months, 45% of those people were still there. The rest had gone. On that we thought wow. Then we did it again, in 2010. And we did it again in 2014. And 2014. What we found was that of everybody who walked into a nursing home after three months, 16% were still there. Wow. And most of those people went home. And that's because so many people now use nursing homes for rehabilitation. So nursing homes, which we used to think as long term care isn't long term care for, for many. For some it is particularly there are people that have dementia living with Alzheimer's or other related disorders who might spend 345 years in a nursing home. But by and large nursing homes are serving both short term and long term people. We also have a lot of people getting care in the community. Home Care has grown dramatically over the last 20 years. And in fact, we do a study we've done for 30 years for the state where we track nursing home use versus Home Care use. And 30 years ago in the state if you looked at everybody who had Medicaid that was the public source of payment for nursing home care. If we looked at everybody who was getting nursing home care, in 30 years ago, 91 out of 100, folks, were living in a nursing home. Today, that same number is 57%. Live in the community in 43% of nursing homes. So the state has changed dramatically how we deliver care. And so a lot more home care is now provided.
Rosemary Pennington
Bob, how much do you think the association of long term care with nursing homes has impacted people's willingness to think about it? Because I have a lot of family members who are like, I don't want to go to a nursing home? And then we'll have other conversations about well, what kind of care could we help you with? So how much of an impact do you think that's had on this willingness to engage in this planning?
Bob Applebaum
Absolutely. You know, I've been studying this for a lot of years, I've still yet to meet somebody who says, I can't wait to get a nursing home. So that's a given nobody wants to go to the nursing home. The fact is that the vast majority of older people do not live in nursing homes. In fact, on any given day, if you take a snapshot of the older population, probably a little bit more than 4% of the older 65 population lives in a nursing home. And more importantly, if you look at even the population of people with severe disability, so in Ohio, we have on any given day, about 180,000 people over the age of 60 that we classify as being severely disabled. And that's based on those ADL definitions that we talked about earlier. Of that 180,000. So these people are all very severely disabled, less than a quarter of those people live in a nursing home. So many, many older people, even with severe disability, live at home with their family members. They buy cars privately. And now we've seen another giant industry growth, and that's called assisted living. And then the state when we first started our study, there were about 200 licensed residential care facilities, which is how assisted living our license. Today, there are about 850. Wow,
Rosemary Pennington
You're listening to Stats and Stories. And today we're talking to Bob Applebaum of the Scripps Gerontology Center at Miami University.
John Bailer
I'm curious about how you know all the work that you've done and this long term care project, how does that impact this kind of policy towards this? I mean, it seems like you've kind of traced the change of demand for services, how these different types of facilities are being utilized. This is clearly going to be a major expense in any state's budget. Absolutely, absolutely. So how has that changed? Or? And is the work that you do help inform some of those changes?
Bob Applebaum
Well, we hope so. When we first started the study, Ohio was one of the lowest ranked states in providing community based options for its citizens. So when we first started our study, we were ranked 47th out of 50, in our what they call balancing between institutional care and home care, in a most recent rating by AARP, Ohio was ranked 19th. And so Ohio has changed dramatically, how it delivers long term services. And in fact, as I mentioned, on any given day, now, we serve more people in home and community based services than we do in a nursing home. And that was unthinkable 25 years ago, we'd like to think that our data has helped state policymakers make better decisions about this balancing, because the data about how we ranked very low were used to expand in 2014, the Pew Foundation, Pew Charitable Trust, put out a report about how states use data to make good decisions. And the one example they gave for Ohio was our project. So at least the Pew people think we did something right.
Rosemary Pennington
Congrats. What do you mean by community base? So I think nursing homes we know and then at home sort of seem like an obvious, but maybe you could sort of expand on that too. But what is a community based solution for long term care?
Bob Applebaum
So essentially, when we talk about community based care, most of that care is in a person's home or the home of a relative, if they happen to live with a loved one. And then the kinds of services they get would be anything from somebody to come in and help them take a shower, somebody to come in and prepare a meal for them, somebody to come in and visit with them to just make sure that they're doing okay. And after that it also depends on some equipment and a lifeline. What you've seen on TV is a common piece of equipment and there are others but those are the kinds of services. In the end, the vast majority of services for people with long term care needs do involve personal care, because it's helped with those functional challenges of daily living. And even if you live in a nursing home, the most services that you get are personal care services, because that's what people with long term care needs. That's what they have to get.
John Bailer
Yeah, so you were at a research center. So you're studying this? And I, you know, the minute I think about that I started thinking about, Okay, well, that means that there's some kind of study design for evaluating questions of interest that there's some data collected and some analysis that's been done. And in particular, you know, I'm just curious what kind of are some of the mechanisms that you use to evaluate the efficacy of services that are provided, or alternatives for providing services?
Bob Applebaum
That's a great question. I mean, I have been involved in many years ago, a randomized clinical trial where people were randomized to receive additional home and community based services, compared to a control group that was getting what existed in the community at the time, it was called the National Long Term Care channeling demonstration. It was a 10 state demonstration that was large, involving 10,000 people and lots and lots of folks. And interestingly, that project had mixed results, in that it did show that people could be safely served in the community. But it also showed that even people in the control group that were getting less service, they and their families, were going to do everything they could to not go to a nursing home, either. And so while the project did have an impact on nursing home use, it was not as big as the framers had thought it would be. One of the things that we've done in our study, which I think is interesting, is Ohio has expanded its home and community based services dramatically. That's both in home care. And the other piece of that is this thing called assisted living, which is considered a community based service as well. Because in assisted living, you have your own apartment, you have your own bathroom, you have a door that you can close and lock. And so it gives people more independence. So we also think of that as a community based service. In both of those settings, you know, people are really striving for independence. And that's what most people want. What we did was, we looked at what happens when Ohio has expanded its expenditures in home and community based services. And when we first testified to the legislature, one of the first questions I got was, well, if you expand services, won't it just cost the state more money? Because you're expanding services, but we're still going to have nursing homes. And what we have done in our research is we've actually looked at the utilization rate, and combined home care and nursing home care. And what's happened over the last 30 years is that we just changed the ratio of home care to nursing home. But our utilization rate is unchanged over the 30 years. So we use that as evidence to say that no, we're not. We're not increasing the rate of use, we're just changing how people use services.
John Bailer
You know, you talked about this assisted living is kind of a service in context. You know, I found myself we were talking about earlier about kind of changes in nursing homes, to thinking about sort of these this new idea that that emerged over the last number of decades, the idea of continuing care, retirement communities, that in some sense, what I, what I thought of in my own framing of this as a nursing home, I'm not sure it exists, that all without as much out of this context of maybe a continuum of services that many people might engage with, and that might be my own kind of ignorance here.
Bob Applebaum
Well, you know, it's like everything, it's complicated. We do have something called continuing care retirement communities. And those places start with independent housing. I love it because they call them cottages but like some of them are 3500 square feet bigger than my house, and then they have apartment living, and then they might have a supportive services and apartment living, and then they might have assisted living, and then they have nursing home care, and that's called a continuing care retirement community. But it also is important to recognize that those are rarities. Okay, if you look at the older population in America 3% of the older population lives in a CCRC. In fact, most older people will never even walk into one. And there are reasons for that. We could talk about some of it related to cost. Some of it related to a desire to live in a, in a sort of community that's not heterogeneous. In addition to that, we have assisted living facilities and nursing homes, most assisted living, and most nursing homes are freestanding. That's all they have. So in Ohio, we have 960 nursing homes, and 85% of them are freestanding. In Ohio, we have 825 assisted living facilities, which are not actually legally licensed as assisted living, they call residential care facilities. And again, probably 90% of those are freestanding. So the continuum that you refer to John is not a continuum in most places. Okay.
John Bailer
I mean, that's, that's the familiarity of kind of local exposure, I think that we have never, you know, I wish that people that are listening to this could see that Bob is just pulling all of this out of memory. I mean, I'm just really impressed that these are all at your fingertips too, to report out on this. And thanks for that context. Although it makes me now wonder, you know, if you have all of these freestanding elements, if someone goes into an assisted living facility, and has need for skilled nursing care, that sounds like it sort of opens up headaches for kind of, gee, how do I do this? How do I transition? So have you studied kind of these various patterns of transition from community to assisted living and back or possibly into skilled nursing care and beyond,
Bob Applebaum
we have, one of the things that we've seen is assisted living facilities, because most folks that are long term stairs, in a nursing home, or assisted living have memory care, we're seeing a dramatic increase in memory care units in assisted living. So in many cases, the memory care person will stay in assisted living the rest of their life. And they've geared up to be able to do that. There are some people that have such high skilled needs, because assisted living by law can only provide 120 skilled days of care a year. That means if somebody needs nursing, they can get it in assisted living provided through a home health agency, but they can only get 120 days a year. And after that, they would need to be transferred to a nursing home. So there's a lot of technical stuff on it. But by and large, assisted living are doing everything they can to make it the last stop in the process. But that's not always the case. The other thing I might add is that you may have heard of active adult communities, places like the villages in Florida, where people are, you know, going to be swinging 60 year olds that can be you know, go to the pool, go to the weight room, go to the bar, whatever. And those are becoming quite popular. But one thing to your question, John, those places, if you get disabled at all, you are out the door, they have no services. So it's also important for people, if they're thinking about the swinging single life or the swinging life in an active adult community, they ought to be thinking about what could happen next.
Rosemary Pennington
Bob, what advice would you have for journalists who are going to be covering issues around long term care? Because I do feel like a lot of media representations that I can remember, you know, you tend to see nursing homes are these kinds of places in the news when things go badly for the for the residents or, but what advice would you have for journalists to want to do like a thorough job of exploring this issue?
Bob Applebaum
I think certainly there's continues to be a lot of focus on nursing home quality. The governor in the state of the state address talked about setting up a commission for nursing home quality. So I think there's still a lot of attention on that assisted living facilities which have grown dramatically and serve almost as many people as we do in nursing homes are much less heavily regulated. And I think that's going to be an area of concern. And then I think, you know, there's a tremendous expansion of homecare services and trying to make sure that people get adequate care in the home is also an issue. The big issue of the day right now, which we see across society, but it's really impacting Long Term Care is the worker issue. We have a tremendous shortage of direct care workers. And that is creating major challenges for all three sectors, home care, assisted living and nursing homes. And it's not an understatement to call it a crisis.
John Bailer
You know, the one time that we've certainly seen just a tremendous amount of discussion about In both nursing homes and nursing home workers has been the impact of COVID. On the facilities? And, you know, could you just give a, you know, kind of just sort of your reaction from thinking about long term care and how this pandemic exposure that's impacted our lives as uniquely and significantly impacted this particular slice of our community?
Bob Applebaum
Absolutely. You know, one of the projects that we're doing at Scripps is a partnership with the AARP Public Policy Institute. And what happened was, when COVID came first came out, the impact on nursing homes immediately was dramatic. And I can talk about that in more detail. But you may recall the headlines with deaths in nursing homes and in fact, COVID has impacted nursing home residents more than any segment of the population. Today, all told throughout the pandemic, about 25 to 30%, of all the deaths from COVID have been nursing home residents, and mind you, that represents point 00 4% of the population. So it's a teeny tiny percent of the population that was dramatically impacted in the work that we do with AARP, the Centers for Medicare and Medicaid Services, CMS has started collecting data from nursing homes to put into a database that is pretty much inaccessible to the public. So what we do with AARP is every month we process that data, and then AARP puts it on a national dashboard to track COVID infections, deaths of residents, infections of staff, and it also includes data about the short staff in direct care workers. And we put that out every month. And I will tell you, of all the projects that I've done in my 38 years of Miami, this project has gotten more media attention than anything that we've done. There have already been more than 2000 2000 media stories, using that data Wow, because every month, there's some state that has gone higher, gone low and it gets attention. But the impact on nursing homes has been nothing short of devastating, you know, at the height of COVID. Pre vaccine in Ohio. Our infection rate was 20 per facility. The average facility is 100 residents. So if you think about the impact of 20 residents it is phenomenal. And about four of those 20 residents died. So at the height of COVID nursing homes were impacted just absolutely dramatically.
Rosemary Pennington
Well, I'm sorry to end the episode on such a depressing note. But Bob, thank you so much for being here. I think we could have probably done a second episode talking about the work you've been doing.
Bob Applebaum
My pleasure, and thanks for asking.
John Bailer Thanks, Bob.
Rosemary Pennington
Stats and Stories is a partnership between Miami University’s Departments of Statistics, and Media, Journalism and Film, and the American Statistical Association. You can follow us on Twitter, Apple podcasts, or other places you can find podcasts. If you’d like to share your thoughts on the program send your email to statsandstories@miamioh.edu or check us out at statsandstories.net, and be sure to listen for future editions of Stats and Stories, where we discuss the statistics behind the stories and the stories behind the statistics.