In This “Episode”

Go To Meeting: This conference will now be recorded.

 

Christy Turner: All right, well now we have official notification and know what to listen for the next time we try this.

 

Phil Gutis: Yes, yes.

 

Christy: So, for the couple of people who showed up yesterday to watch the sausage being made and see The Alzheimer’s Podcast filmed live before a semi-studio audience, thank you.

It was not recorded. Because I did not hit the record button. Even though there’s a little circle that says record, apparently that’s a prompt command, rather than an indication of what’s happening.

 

When we were recording, there were 3,600 people who had died in nursing homes across the United States.

 

And I see it has now turned into a verb; it says recording. So, now I know we’re good to go, which, unfortunately—we had a really good conversation yesterday, talking about what’s happening in nursing homes.

There are—and I haven’t checked for the latest numbers today, but yesterday [April 13, 2020] when we were recording, there were 3,600 people who had died in nursing homes across the United States. That’s a lot of people. [Note: As of May 4, 2020, approximately 16,000 residents and staff in long-term care across the United States have died. -CT]

 

“When are we going to be able to visit [our person] again? When do you think it’ll be okay to go in?”

 

I was talking to some clients last night and I was saying it is probably at least double, if not triple or quadruple that because, so far, the Centers for Medicare and Medicaid (CMS) have not required that reporting be done. So, the information that we have is only from providers who are voluntarily providing that information.

But my clients’ question was, “When are we going to be able to visit [our person] again? When do you think it’ll be okay to go in?”

Their person isn’t in a nursing home, but kind of in general, when’s it going to be okay to walk into any type of long-term care community again? And what will that look like?

 

Phil: That’s a good question.

 

Christy: Right. And it forced me to really think about that. I’m trying to figure out when that will safely happen.

 

Long-term care is the redheaded stepchild of the health care system in the United States.

 

Phil: Well, apparently there are tests that, if we ever got ourselves together as a country—I  know I read the White House has a test where people who are going to see the President or the Vice President have to take a test and then they get their results in 15 minutes.

So, I could easily see something like that working. You check in, get a test. If you’re clear, then you go in to see your person. What that means is a ramping up of technology. But if the White House can pull it off, why not others?

 

Christy: I think you’re right. I also think that there’s probably no way for me to say this without sounding like a jerk: Long-term care is the redheaded stepchild of the health care system in the United States.

Because long-term care primarily serves older adults and people with chronic conditions. Many of those, many, many people with chronic conditions in long-term care—one of those chronic conditions is some type of neurodegenerative disorder.

 

I do think that we’re going to see a lot of things change in our society. I think this educational moment will cause a lot of changes.

 

And I haven’t seen the care or attention to that population that I would’ve liked to have seen. Ever. In the course of my career. And I’m not feeling optimistic that that’s going to be changing anytime soon, because people are saying things like, I’m willing to—you know, I’m over 70, so, you know, what the heck. I don’t want to sacrifice the economy for my grandchildren!

When people in positions of authority say things like that, that does not make me hopeful that they place value on the lives of people living with neurodegenerative disorders.

 

Phil: Two things to say about that. I believe that gentleman was roundly criticized, and others suggested that he go first if he feels that strongly about it.

And, I do think that we’re going to see a lot of things change in our society. Certainly, until there’s a vaccine. But I think, even more broadly, I think this educational moment will cause a lot of changes. Hopefully, one of them will be how treat our medical professionals and those who are caregivers and things like that.

 

This pandemic will change things more broadly, probably more quickly than they would have.

 

I’ve been researching and just finished a piece about delirium for Being Patient. Dr Karlawish, who wrote the article [in STAT News], he notes that he’s not a visitor; he’s a caregiver. And when dealing with people with cognitive conditions, his being in the room is almost as critical as a ventilator for his person. And, in this case, it’s his uncle.

And he writes that things were changing before, but very, very slowly. He sites an example:

“Brigham & Women’s Hospital in Boston even today is allowing visitors, including caregivers for patients with disruptive behavior, altered mental status, or developmental delays. Only one caregiver is allowed and is required to remain in the room.”

So, I think there are signs that things are changing. And, even before this. I think this pandemic will change things more broadly, probably more quickly than they would have.

 

Christy: So, you think things are going to change for the better?

 

Certainly we can’t continue the way we are, with nurses in garbage bags.

 

Phil: I think so. I think there’s going to be—until our collective memories fade. At least, until our collective memories fade. But I do think this was a serious enough wake up call, in many areas of medicine, caregiving.

And also, of course, as the population ages, as more and more people find themselves in these facilities. With more and more families pushing for better care, et cetera, et cetera, et cetera.

I do think things will change. I hope they will. I almost think they have to. Because certainly we can’t continue the way we are, with nurses in garbage bags.

 

Christy: You’re talking about in a hospital setting, and—

 

The Great Depression brought an enormous number of changes in terms of the social safety net. This is beyond the level of the Great Depression, in terms of its impact on our economy, impact on our families.

 

Phil: I’m talking about a lot of things. You know, I just think it’s, it was a wake-up call for many, many areas of our lives. I think we’ll see a series of changes. I mean, the Great Depression brought an enormous number of changes in terms of the social safety net, et cetera, et cetera, et cetera. 

This is beyond the level of the Great Depression, in terms of its impact on our economy, impact on our families, and people. And I think we will see change.

 

Christy: What exactly do you think will change? Specific to long-term care? Living with neurodegenerative diseases?

 

Phil: That’s beyond my pay grade. And it may be that I’m hopelessly naïve or too optimistic. But I just—you know, the fact that how many ever thousands of people have died in these homes? I mean, we’re seeing the prisons being emptied out of low-level offenders, you know, because of the danger [of contracting Covid-19].

 

I think we’re going to see some significant change in the way the country is run and how we look at people, our caregivers, our collective caregivers.

 

That’s a trend that was starting to develop anyway in recognition, you know, low-level offenders, nonviolent offenders don’t belong in prison. We started to see the country on a course correction for that, anyway. I mean, a lot depends on what happens in November [when U.S. federal elections are held], I suspect.

Yeah, there is certainly a sense—we saw it yesterday in Wisconsin [when people stood in line to vote in the state’s primary election]. People are angry and committed to seeing change.

I think November, again—oh, out on my limb. But just based on what I’ve been reading, you know, I think we’re going to see some significant change in the way the country is run and how we look at people, our caregivers, our collective caregivers.

 

Christy: Your lips to God’s ears. I hope that’s true.

 

Phil: Yeah. I mean, history suggests that it will. History also suggests we could have a revolution. But I don’t think there’ll be a revolution.

 

What will the impact be on people living with neurodegenerative diseases and their families?

 

Christy: But what other changes do you think we’re going to see, and what will the impact be on people living with neurodegenerative diseases and their families?

 

Phil: I think there’s going to be more value to healthcare. And not being properly staffed and prepared and funded, what that ultimately means, you know, when we need it. And you can’t turn around and say, “Oh, now we need 400,000 more doctors and 80,000 or 800 million more caregivers, professional staff.” You can’t turn around and say, “Okay, let’s have everybody come in now.”

So, I think there’s going to be a recognition that these fields need to be—and the ability to pay for this stuff. We’re the richest country on earth. We can spend, apparently, we can spend whatever the hell we want, anytime we want. You know, trillions are going out the door now to prop up the economy. So, the money is apparently there to do what is necessary to do, and we just have to have the political will.

And maybe that’s what will change, is the political will will now exist. You think I’m hopelessly naïve. I can tell, even though we’re not videotaping anymore, I can see it in your—I can hear it in your tone of voice.

 

It feels like the bill is coming due right now in the health care system.

 

Christy: I haven’t even been saying anything. You’ve been doing the talking!

 

Phil: Yeah, yeah, yeah.

 

Christy: Well, I mean, it is true. And I feel like just kind of looking back to, let’s say, around 2002. Yeah, it’s true: we can spend an endless amount of money on anything we deem necessary. That’s really true and has been proven time and time and time again. And it’s obviously, it feels like the bill is coming due right now in the health care system.

And even as I say that, I know that’s not a universal feeling within the United States, because there are areas where you know—like, anybody in New York City I think would probably agree with us.

 

There’s this thinking, Unless something happens to me, then maybe it’s not important.

 

That doesn’t mean that, apparently, people in South Dakota would agree with that. There are places that just have not been hit hard yet. Or are taking proactive measures to ensure that they’re not hit hard—like California and Oregon—or minimizing what they do have so it isn’t far more disastrous. Washington could have been far more disastrous than it was.

But I think weirdly enough, it’s like there’s this thinking, Unless something happens to me, then maybe it’s not important. That seems to be kind of a prevailing thing, that is still gaining more traction than I would have thought possible during a global pandemic.

 

Phil: Yeah. I mean, the expectations are that as Europe is beginning to flatten its curve in the midst of the outbreak, you know, we’re not done yet. I mean, it’s just now moving across the country to more and more areas. What was that pork production plant that closed yesterday?

 

If it ends up taking out Grandma along the way, well, that’s a bummer, but Grandma wasn’t out there contributing to the economy in the first place.

 

Christy: That was in South Dakota.

 

Phil: That was 300 cases, if I remember correctly. 300 plus cases in one facility in South Dakota.

 

Christy: Yes. But there is still no statewide order in South Dakota to stay at home because the governor’s feeling is that is an infringement on personal liberty, to act in a manner that is best for the collective good.

And I would venture to say that governor is not alone in her reasoning. There are millions of people across the United States who share that same belief: If it ends up taking out Grandma along the way, well, that’s a bummer, but Grandma wasn’t out there contributing to the economy in the first place.

That’s the attitude that scares the hell out of me.

 

It’s not going to be instant, but I think we’re going to start to see [change].

 

Phil: There’s always going to be that, you know, there’s always going to be a group of people that are going to not see the good. But the question is, will the majority viewpoint change?

Again, hopefully—my optimistic point of view is that yes, the majority will see a change. We’ll start to see it. You know, it’s not going to be instant, but I think we’re going to start to see it.

There’s no way of knowing that right now.

 

Christy: Right. And I actually wanted to narrow down the focus a little bit to what happens right now? So, for example, in Oregon, in California, in Washington, presumably in New York, you know, other places in the country—you cannot go to visit your person if they live in an assisted living, if they live in a memory care community, if they live in a nursing home, if they live in an adult care home. Those are all no-goes.

Those levels of care I just mentioned are all part of long-term care. My clients’ question last night was, “When do you see that changing and us being able to go visit again?”

 

I was really trying to figure out a way where [allowing visitors] seems like it’s going to be a good idea.

 

And I was really trying to figure out a way where that seems like it’s going to be a good idea, that’s going to be viable thing.

In trying to figure out when are folks going to be able to go visit their loved one again, their person who lives in long-term care, I don’t see that being a priority, being at the front of the line. And the reason why is, as I was saying earlier, because long-term care has traditionally, historically, been the redheaded stepchild of the U.S. healthcare system.

Obviously, we know in the U.S. there’s still not widespread testing. That is still a problem. It is a massive problem within long-term care, and when you have people—they’re saying a solid 25% of folks are asymptomatic and could spread Covid-19 wherever they go. And that’s at least 25% of folks.

 

The people who live in those settings are sitting ducks.

 

I’ve heard 50%; I’ve heard up to 76%. But let’s stick with 25%, because that seems solid. One of the things about long-term care is the services come to you. So, if you live in memory care, for example, the podiatrist comes to your memory care and provides services there. The dentist comes and provide services there. The nurse practitioner comes and provides services right there. The medical director. The care manager. The hospice team. The home health team, which does occupational therapy and physical therapy.

All of those services come to you. And when a service works like that, that means that typically we’re going to see more than one person in the community. Not always, but typically there’s going to be more than one person who lives in that community that we’re going to see.

And then we’re going to take that traveling road show to the next memory care community, the next nursing home, the next adult care home, the next assisted living, which is how it spreads, and also why the people who live in those settings are sitting ducks.

 

It’s not realistic to think that families are going to be able to come into those settings without having some type of testing that shows that they’re fine.

 

So, what was once something everyone would agree is fantastic for older adults or cognitively impaired folks or folks that just, it’s more difficult for them to get out because of transportation or health issues—that’s fantastic to have the services come to them. Except when we’re dealing with a pandemic, in which case that’s bad.

And it’s not realistic to think, then, that families are going to be able to come into those settings without having some type of testing that shows that they’re fine, that they have the antibodies.

 

Thinking about all of it just makes me really frustrated and so sad.

 

Because otherwise, I think you go through this cycle until everybody who lives in a care community either has antibodies that prevents them from getting this again—and there are questions about that, if that really offers protection—or they, they’ve died. Because they’ve been exposed and have underlying health conditions that make them especially vulnerable. And the population that lives in long-term care settings is vulnerable for a variety of reasons.

So, in looking at when might that happen [families being able to visit again], I was listening earlier today to Dr Irwin Redlener, and he was saying again that a really fantastic scenario would be if we had a vaccine by May of 2021.

So, I’m not sure how quickly people are going to be able to visit again. And inevitably, whether a person is exposed to Covid-19 or not, there are certainly folks that, because of disease progression, are already on a trajectory to be at the end of their life right now, or will be at the end of their life within the next year.

Thinking about all of it just makes me really frustrated and so sad.

Read on for part two.


 

Dementia can last 20+ years.

That's a long time to struggle with trial and error!

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Christy Turner is a speaker and consultant, host of The Alzheimer’s Podcast, founder of DementiaSherpa.com, and creator of the online programs Memory Care at Home and The Dementia Sherpa’s Guide to Moving into Memory Care. She’s enjoyed the privilege of working with over 1,500 people living with dementia and their families so far, including multiple experiences in her own family.

Phil Gutis is a former New York Times reporter and current contributor. He served on the Alzheimer’s Association Early Onset Advisory Board and is currently on the board of the Alzheimer’s Association-Delaware Valley Chapter. In addition to being a full-time Alzheimer’s advocate, Phil is a reporter for Being Patient, and is the Assistant Sherpa on The Alzheimer’s Podcast. Phil was diagnosed with early onset Alzheimer’s disease five years ago, at age 54.


 

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