Podcast: Dana Mukamel on How Widespread Dementia Is In Nursing Homes
Editor-in-Chief Alan Weil interviews Dana Mukamel from the University of California, Irvine on her recent paper examining whether residents diagnosed with Alzheimer's disease and related dementias are spread out across nursing homes or concentrated in a subset of nursing homes.
She and co-authors found that residents with dementia tend to be dispersed, with the vast majority residing in homes that treated residents with other diagnoses.
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FULL TRANSCRIPT
00;00;00;00 - 00;00;33;10
Alan Weil
Hello and welcome to “A Health Podyssey”. I'm your host, Alan Weil. As many as 40% of the 1.2 million people who are resident in nursing homes in the United States are diagnosed with Alzheimer's, another form of dementia or cognitive impairment. This growing population experiences unique vulnerabilities and has specialized care needs, needs that may differ from those of other nursing home residents.
00;00;34;05 - 00;01;05;00
Alan Weil
How well are the needs of people with dementia met in nursing homes? That's the topic of today's episode of “A Health Podyssey”. I am here with Dana Mukamel, professor in the Department of Medicine at the University of California, Irvine. Dr. Mukamel and coauthors published a paper in the June 2023 issue of Health Affairs examining whether residents diagnosed with Alzheimer's disease and related dementias are spread out across nursing homes or concentrated in a subset of nursing homes.
00;01;05;18 - 00;01;28;19
Alan Weil
They found that residents with dementia tend to be dispersed, with the vast majority residing in homes that treated residents with other diagnoses. They also found that only a very small share of nursing homes have indicators of the highest quality of care for these residents. We'll discuss these findings and their implications on today's episode. Dr. Mukamel, welcome to the program.
00;01;29;07 - 00;01;30;28
Dana Mukamel
Thank you, Alan. It's a pleasure.
00;01;31;24 - 00;01;54;12
Alan Weil
This is a really important topic. I just, in the introduction, said a very little bit about the population. But since you study them, I wonder if you could say a little bit more about how many people in the US reside in nursing homes, what share have dementia, Alzheimer's or something else. And whether this is a growing population, which I guess I assume it probably is.
00;01;54;26 - 00;02;28;08
Dana Mukamel
Well, you're definitely correct. In 2022, the last statistics we have, the 1.2 million people in nursing homes and our data for an earlier period, 2017 to 2019, shows that about, that over 40% of them have ADOD, Alzheimer disease and related dementia. And the projections are that these numbers, as you suggested, are going, in fact, the expectation is that by 2060 the numbers will double.
00;02;28;27 - 00;02;33;12
Dana Mukamel
So we are looking at a substantial increase in these numbers.
00;02;34;04 - 00;02;46;18
Alan Weil
So as we look at this growing population, can you say a little something about how the care needs for people with dementia would differ from someone who is in a nursing home who doesn't have dementia?
00;02;47;07 - 00;03;26;19
Dana Mukamel
The thing with people with dementia is that the most important thing probably is that they have difficulty in communication. If any of you have met those, knows anybody with dementia, you know that they have difficulty expressing what they need, expressing the thoughts and also understanding people who are talking to them. So it's difficult for the caregivers to understand what those symptoms are, to identify new symptoms, to understand what their needs are.
00;03;27;03 - 00;03;53;04
Dana Mukamel
So you can imagine that if there's somebody who has this dementia patient, who has pain, is in pain, has difficulty breathing, the person who is taking care of them is not going to be aware of it as easily as they would be if it's somebody without dementia. So the caregiver really needs to be more in tune with the patient in dementia.
00;03;53;04 - 00;04;25;10
Dana Mukamel
They need to have good observational powers, and unless they've had some special training, they're not very likely to be able to observe those symptoms and to be able to take care of the patient with dementia. And as you can imagine, as a result of that, often, more often than not, the patient with dementia is not going to receive the care they might need or the care that might need might be delayed, and as a result, the patient with dementia might feel neglected.
00;04;27;15 - 00;05;12;04
Dana Mukamel
And as a result of that, they might be more aggressive. We find that a lot with patients with dementia. They might be more agitated. In addition to that, another concern that we have with the patients with dementia is that they tend to wander, they get confused if they are in an environment that is not familiar to them, which as you can imagine, being in a nursing home, which is not your home, you don't recognize the environment, you don't recognize where you are. You start to move around, you wander within the nursing home and you get lost.
00;05;12;12 - 00;05;29;16
Dana Mukamel
So there are a lot of things that even the caregivers are not trained to recognize and understand about the patient with dementia and how to create a rapport with them, how to prevent agitation. All of that creates situations that are not appropriate for those patients.
00;05;30;00 - 00;05;55;25
Alan Weil
So that's really interesting. And you've described sort of a combination of both the personnel side training and the like and also sort of the physical manifestation of the nursing home itself, how it's organized, how it's structured, how it's laid out. All of those things might need to be different. So this led to the primary question you asked in your study, which is where do people with dementia live?
00;05;55;26 - 00;06;08;19
Alan Weil
Are they concentrated in a small number of locations or are they sort of spread out across nursing homes just like anyone else might be spread out? What did you find?
00;06;09;15 - 00;06;15;19
Dana Mukamel
They are definitely spread out, as we said in the paper, they’re sprinkled in nursing homes.
00;06;16;14 - 00;06;53;18
Alan Weil
So you could imagine, I mean, I know in my neighborhood there is a nursing home with a memory care center. And you could imagine that most people with dementia are in facilities that have a focus on people with dementia. But your findings are that people are spread all over in lots of different nursing homes. And so what did you find out about the characteristics of the nursing homes, where people are, where there may be very few people with dementia or they're sort of sprinkled or have a very large share of the residents with dementia?
00;06;54;13 - 00;07;30;11
Dana Mukamel
We found three types or three groupings of nursing homes. There's a group that is less than 500 nursing homes, which has very low census of nursing homes. In these types of nursing homes, which tend to be relatively small, about 18 beds, or no more, these nursing homes tend to have short stay patients, mostly Medicare patients, and the relatively high case mix.
00;07;31;04 - 00;08;02;27
Dana Mukamel
And these nursing homes also tend to have high staffing. So when we look at them, we think that these are probably what one would call post-acute patients, those who come home from the hospital and require a lot of rehabilitation care. And for those, we assume that dementia is probably a co-morbidity. This is not the reason that patients have been admitted to the nursing home, too.
00;08;03;12 - 00;08;42;20
Dana Mukamel
And these are the nursing homes that have less than 30% census for patients with dementia. And then the vast majority of patients with dementia are actually all over the place. You will find them in nursing homes means as low as 40% census for patients with dementia and as high as 70-80% census of dementia. And in these nursing homes, it's probably about 90% of the nursing homes and 90% of the patients with dementia.
00;08;44;14 - 00;09;20;14
Dana Mukamel
And these are the long stay patients. These are patients that probably will stay there until they die. Unfortunately, they have low staffing, also RNs and CNAs. And unfortunately, as the census of dementia goes up, staffing goes down, which suggests that they get somewhat less care rather than more care, as one would have wanted. These sort of your average nursing homes, they all have about 200 beds and average capacity.
00;09;20;14 - 00;09;57;06
Dana Mukamel
So they seem to be similar across the board. And then there is the one shining star, call it if you will, the nursing homes at the very top, which basically cater mostly for nursing, for patients with dementia with over 90% of patients with dementia. These are basically just dementia nursing homes. They have over 90% of the census dementia patients.
00;09;57;11 - 00;10;19;05
Dana Mukamel
They are smaller nursing homes. Interestingly enough, they have 80 beds, but interestingly enough, they have the highest occupancy compared to anybody else, which I guess also tells you something. And they have higher staffing, higher RNs, higher CNAs.
00;10;19;08 - 00;10;45;28
Alan Weil
So you've described an environment where there's this group of nursing homes that really are short stay post-acute and you wouldn't expect to see a lot of patients with dementia there as you described. But the vast majority of people with dementia in nursing homes are not in specialty nursing homes. They're in general nursing homes where a share of the population, as you mentioned, somewhere in the 30, 40% up and up are cared for.
00;10;45;28 - 00;11;18;11
Alan Weil
And those don't have the resources of the post-acute because they're mostly Medicaid, which has lower reimbursement rates than Medicare. And so there are fewer resources. And it shows, it sounds like in the staffing. And then you have this, as you say, the shining star at the top. I'd like to talk to you a little bit more about the quality of care differences and what we might want to do about that, because the finding that these residents are sprinkled around suggests that maybe they're not getting everything they need.
00;11;18;11 - 00;11;57;25
Alan Weil
So we'll discuss quality and how to improve it after we take a short break. And we're back. I'm speaking with Dr. Dana Mukamel about dementia care in U.S. nursing homes. Before the break, we learned that the vast majority of nursing home residents with dementia are in nursing homes that care for a lot of people who don't have dementia.
00;11;58;06 - 00;12;36;14
Alan Weil
But we also learned that there's this upper tier of facilities where more than 90% of the residents have dementia. And before the break, you gave us a sense of the staffing level differences. I wonder if you could say a little bit more about how we measure quality of care in nursing homes, a little bit more generally, and what you found about the quality of care beyond just the staffing levels and resource levels that you mentioned for people in these very highly concentrated dementia patient resident nursing homes?
00;12;37;20 - 00;13;11;14
Dana Mukamel
Well, we don't have specific measures that are specific to dementia patients or to the care that these patients receive. We do have measures that are general to the general population, and they're measures that are measured over the whole population. They are specialized to the long stay and the short stay. So it would make sense to look at them in terms of the long stay patients were most of the patients with dementia.
00;13;12;21 - 00;13;55;15
Dana Mukamel
That's not what we did. We didn't have that available to us. But we did look at several important outcomes which are hospitalizations, emergency room visits and death. And those are important in particular because it doesn't really make much sense to send patients with dementia to the hospital unless it's obviously very, very important. Just as the environment, as I mentioned beforehand, is so important for patients with dementia in the nursing home.
00;13;55;24 - 00;14;30;29
Dana Mukamel
And it could be confusing to them and make, they'll stay unsafe. Just imagine sending them to the hospital and making it even more confusing, more unsafe. So to the degree that care can be provided, medical care can be provided in the nursing home. That's a much better alternative than sending them. If one can avoid sending them to the hospital, that's a much better alternative than sending them to the hospital in the same ways
00;14;30;29 - 00;14;59;12
Dana Mukamel
emergency room that are not followed by hospitalization. So that's why we look to be focused on these two outcomes. And of course, death. And then in addition to that, we also looked at the five star measures or ranking, rather, that CMS publishes on its quality report card, which people are probably quite familiar with. Well, I think of it as the Zagat for nursing homes.
00;15;00;28 - 00;15;33;01
Dana Mukamel
So those are the things to be looked at. And what we found followed along the lines of the three groups I mentioned beforehand. So those were very different for the first group. Well, we think the post-acute patients, well, we have very low census of patients with dementia. So their hospitalization and emergency rooms are relatively high as well as death rates.
00;15;33;17 - 00;16;01;14
Dana Mukamel
And, but then they all decline as the census for patients with dementia increases. And that makes sense because as you have more patients with dementia and that's helpful because we would like to see, as I said, hospitalization and emergency room rates decline as you have more patients with dementia, death rates basically stabilize, which is also a good measure, a good finding.
00;16;02;05 - 00;16;39;10
Dana Mukamel
But then what was really intriguing for us to see was that when we got to the 80 and 90 percentile, we have nursing homes that really have high concentration of patients with dementia, both in particular the hospitalization rates. But the emergency room rate as well made, the trend was particularly went down really hard, suggesting that at these high concentrations these nursing homes were doing something particularly great.
00;16;40;15 - 00;17;12;13
Dana Mukamel
They really figured out how to keep those patients from going into the hospital, which is really heart warming, so to speak. And then when you look at the five star measure, you see the same trend. You see that it's basically sort of led across all the nursing homes, all the deciles in terms of deficiency citation. And then it sort of goes up towards better quality
00;17;12;16 - 00;17;53;00
Dana Mukamel
when you get towards the 80 and 90, particularly the 90 percentile of patients with dementia. And when we looked at the component, it's particularly in terms of the health deficiencies and the clinical measures. So my sense is that those were really something special going on in those, in this last group that lost decile worth patients. The patients are really concentrated where you have the 90% or more census of patients with dementia.
00;17;53;11 - 00;18;19;24
Dana Mukamel
Unfortunately, it's a really small group. It's only 130 nursing homes. It's less than 1% of the patients that, patients with dementia in the whole big universe. But if you know, that's probably the place to go if you want to learn and figure out how to provide great care to these people.
00;18;20;11 - 00;18;51;14
Alan Weil
Well, that's exactly what I'm fascinated by in these results, is you have what appears to be a qualitatively different standard of care or organization of care. Again, this is a quantitative study you've done here, so we'd have to take a different approach if we wanted to figure out the ingredients. But there is something qualitatively different about this relatively small number of nursing homes that focus quite intentionally and almost exclusively on people with dementia.
00;18;51;29 - 00;19;15;22
Alan Weil
Before we talk about it more, I do have to say the fact that there are not separate quality measures for people with and without dementia is also seems like a shortcoming and something we probably could fix. But that's not what we're going to do here in our conversation today. I am curious about the nursing home staffing ratios. That is some, you know, that was one of the first things you mentioned about the variation.
00;19;15;22 - 00;19;33;03
Alan Weil
And of course, there have been policy initiatives to increase those ratios. And so I wonder if, based on this work and other that you do, you think those are sufficient or helpful or kind of maybe the wrong question?
00;19;33;06 - 00;20;10;20
Dana Mukamel
I think they are helpful. I don't think they are sufficient. You know, raising the tide raises all boats. The Biden administration has recently issued a new executive order that calls for both increasing, as you said, the ratio, the staffing ratios and also increasing training. So both things are good, but they didn't do and they didn't say anything specifically about dementia.
00;20;10;22 - 00;20;52;21
Dana Mukamel
So to the degree that nursing homes will have more staffing overall, I think, well, first of all, patients with dementia will definitely benefit from it. It also, I think would give nursing home administrators more flex to be able to rearrange staffing and provide perhaps more care or more staffing time to patients with dementia. But there's nothing there to make a distinction between those nursing homes that have a 40% census and those nursing homes that have an 80% census.
00;20;52;24 - 00;21;18;27
Dana Mukamel
And that's the piece that's missing. And the same in terms of training, there's nothing there that says that should be some part of the staff that needs to have this specialized training. And it's not everybody in the staff. I mean, that's obviously going to be more expensive to train staff for that, but not everybody needs that training.
00;21;18;27 - 00;21;26;08
Dana Mukamel
So that's the part that's missing. So I think it's great. It's a step forward, but we need a few more steps forward.
00;21;26;18 - 00;21;58;00
Alan Weil
Yeah, that's really helpful because I think I'm glad it is a step since we seem to be taking it. But it also suggests from your work that it takes a lot more than that and we need to have a broader sense of what is required in order to provide the quality of care that people deserve. Well, Dr. Mukamel, thank you so much for the study and for talking with me about it and the implications, the glimmers of hope and the shining stars really are there.
00;21;58;01 - 00;22;11;11
Alan Weil
Let's see if we can find out a little bit more about them and do something to improve care for this growing population. And that's would be a great outcome here. Thank you for being my guest on “A Health Podyssey”.
00;22;11;13 - 00;22;17;03
Dana Mukamel
Well, thank you for having me and thank you for showing the interest in my work. It was a real pleasure.
00;22;20;07 - 00;22;24;14
Alan Weil
And thanks for listening. If you enjoyed today's episode, I hope you'll tell a friend
00;22;24;15 - 00;22;25;24
Alan Weil
about “A Health Podyssey”.