The ebola epidemic in West Africa is not just a health care crisis. It has affected every corner of society in the countries most affected. Schools have been closed for months, infrastructure projects have been put on hold and GDP growth has slowed to a crawl. A discussion of the social and economic cost of Ebola in Guinea, Liberia and Sierra Leone.
For the elderly who are unable to live alone but don’t want a nursing home, assisted living can seem like a nice alternative. Many feel they can still have independence in communities that have the look and feel of an apartment complex, rather than a hospital. Since the first one opened 20 years ago, the number of assisted living facilities has exploded. Nearly 750,000 Americans call them home. But unlike nursing homes, assisted living facilities are not federally regulated, leaving them subject to a patchwork of state and local laws. Diane and her guests discuss new questions about assisted living.
- A.C. Thompson reporter, ProPublica and PBS/Frontline. He is the correspondent for the PBS/Frontline story "Life and Death in Assisted Living" and the author of a four-part series by the same name for ProPublica.
- Becky Kurtz director of the Office of the Long-Term Care Ombudsman Programs at Health and Human Services.
- Larry Minnix CEO of LeadingAge.
- Dr. Joanne Lynn geriatrician, hospice physician and director of the Altarum Institute Center on Elder Care and Advanced Illness.
MS. DIANE REHMThanks for joining us. I'm Diane Rehm. For an increasing number of elderly Americans, assisted living has become an appealing long term care option. There are now more than 30,000 such facilities across the country, but some say the growth and popularity has come with a cost, a lack of oversight when it comes to care.
MS. DIANE REHMHere to discuss new questions about assisted living: Dr. Joanne Lynn of the Altarum Institute Center on Elder Care and Advanced Illness, Larry Minnix -- he's CEO of LeadingAge, a group of representing nonprofit assisted-living facilities -- and Becky Kurtz of Health and Human Services. I do welcome your comments throughout the program.
MS. DIANE REHMGive us a call, 800-433-8850, send us an email to firstname.lastname@example.org, follow us on Facebook, or send us a tweet. But first we're joined from Berkeley, Calif. by A.C. Thompson. He's a reporter for ProPublica and PBS/Frontline. He's a correspondent for the Frontline documentary "Life and Death in Assisted Living" that aired this week. It also appears in a four-part series at ProPublica.org. A.C. Thompson, welcome to "The Diane Rehm Show."
MR. A.C. THOMPSONThanks for having me on.
REHMTell us how you got interested in this story.
THOMPSONYou know, I was working on a documentary about issues involving the elderly, and I kept hearing from different people, who know that world, that I should look at assisted living. And they kept saying, you know, there's things going on in these facilities that most people aren't aware of. And the more I looked at it, I realized this is kind of a secret world, and there's a lot of things that are occurring that most people just don't know.
THOMPSONMost people don't know how lax the fines are for facilities that make errors that kill people in some states. Most people don't know how heavy the marketing is and the sales aspect is at some of these companies. Some people don't know about some of the really awful incidents that have occurred. And so that's what made me want to dig into it.
REHMYour reporting actually focused on one company in particular, Emeritus. Tell us about this company and what you learned about them.
THOMPSONSo Emeritus is the leader in this industry on the for-profit side. They control about 500 facilities. They have operations in 45 states. Last year, they generated about $1.6 billion in revenue. And we looked at them 'cause in many ways the things that they do and the problems that they have are reflective of the big players in the for-profit industry. And by that I mean they're really focused on developing facilities for people with Alzheimer's and dementia, and that's increasingly where this industry is going.
THOMPSONWhat I mean by that is, when we looked at their state inspection records, we kept seeing patterns of citations for not having enough staff members on duty, not training the staff, for making medication errors, for issues with neglect, for issues with residents with Alzheimer's wandering away from the facilities. And those were the things that we saw reflected to a greater or lesser degree in many of the other chains, in many of the other facilities.
REHMAnd you identified more than two dozen so-called questionable deaths. What made them suspicious, and how did Emeritus respond?
THOMPSONYou know, these were deaths in which state regulators faulted the company or in which there was a lawsuit and the company settled. And when you look at some of these cases, the company will say, well, you know, we didn't make a mistake here. But that doesn't seem to be what the state records show. And that doesn't seem to be what the evidence shows. And, you know, the kind of things that we're talking about are situations like the incident with Mabel Austin who froze to death in front an Emeritus facility on Christmas morning in about 2004, and she had Alzheimer's.
THOMPSONShe had gotten out of the facility. It was supposed to be a secure safe memory care facility that she was in. And somehow, she had left the facility in the middle of the night. According to the police report, there was only one staff person on duty, and she didn't realize that Mabel Austin had left the building. That was almost 10 years ago, but the problem was we kept seeing things like that happen over and over again when we dug into the records and the lawsuits.
REHMAnd I guess the question becomes, should someone like Mabel Austin had been in assisted living in the first place, or did they perhaps need a higher level of care?
THOMPSONYou know, it's never -- it's not -- that's not an easy for sure, and people have said, you know, your report makes it look like there's a binary. All the folks that you're focusing on should have gone to nursing homes. And we don't know that that's the case, and I wouldn't argue that's the case in all the deaths and all we've seen. In some of them, certainly it appears that these were people who needed care that could not be provided by assisted living.
THOMPSONAnd I'll give you some examples. We have seen cases with people who had really serious psychiatric illness and psychiatric problems that an assisted-living facility's just not really equipped to deal with. We have seen problems with people who are physically aggressive and violent and attack other folks. Well, a lot of states bar those types of residents from living in assisted living. If you've got a history of violence, if you're a threat to yourself or others, a lot of states will say, hey, you know, this is not the right place for you to be.
REHMBut you focused really on just one company. How do you think that company reflects on the industry as a whole? And, by the way, we should say that we have invited the company you focused on to be part of the program this morning. We have not yet heard back from them.
THOMPSONWell, you know, I should first say that I think there's a lot of great assisted-living facilities out there. I think it's a great option for many people who need help and can't live on their own anymore. What concerns me is what I see at companies like Emeritus and let me tell you why I think they're reflective in some ways of bigger problems here is with Emeritus, this is a company that when the state of California says, hey, you know, we think there was a problem here.
THOMPSONWe think there was an error, and it led to one of your residents' death. Well, they're getting a $150 fine for that from the state of California. When you see a situation like we saw with George McAfee, who was an NFL Hall of Famer, who had dementia who lived an Emeritus facility in Georgia and died after drinking poisonous dishwashing liquid that was left out and should not have been, well, the state of Georgia in that case said, well, this is a $601 fine for you -- for George's death, as well as an unrelated medication error involving another person.
THOMPSONAnd what we sort of wondered was, is this really affecting the behavior of a company with $1.6 billion in revenue? And we're not sure that it is. The company will say it is. Hopefully, it is. But we saw the patterns happen over and over again with Emeritus where it wasn't really affecting them.
THOMPSONAnd the problem is we're seeing the same similar patterns with a lot of other companies. If you look into the state records, similar things crop over and over again, come up over and over again and to greater and lesser degrees. There's people that do a better job. There's people that do a worse job, and it's very hard to gauge with the data out there.
REHMIt's so interesting because what used to be called nursing homes more and more are now being called assisted-living facilities. And how did that get started? How did that transition in terms that we use begin?
THOMPSONYou know, I would argue the terms haven't changed that much, but that the population has evolved. So -- and this is a thing that we've heard from all kinds of people, including Granger Cobb, the head of Emeritus, that the population has changed. And if you look at the data that's out there -- and like I said it's not great data, but there is some -- what you see is increasing levels of people with dementia and Alzheimer's, increasing levels of people with serious physical limitations.
THOMPSONSo now, you're looking at more than 50 percent of the people in assisted living really need help with a lot of basic things, like taking a shower, like getting dressed, that kind of stuff. And so what you see is increasing frailty, increasing dementia and maybe not so much an increase in oversight from the states.
REHMSo perhaps not enough well-trained staff?
THOMPSONYeah. I think that's absolutely an issue, and the companies will tell you, look, we do a great job. We train everyone. Everyone gets eight hours of training. They get this. They get that. But here's the thing.
THOMPSONWhen we look at a facility like the Emeritus in Auburn Hills -- or Emeritus at Emerald Hills, an Auburn, Calif. facility, we spent a long time looking through their records and found that the head of their memory care unit didn't know the basic stages of Alzheimer's and dementia, didn't get the legally required training required under the state for about 18 months, and was responsible for supervising all the people in the company's memory care facilities, as well as supervising the employees.
THOMPSONAnd that's the kind of thing that's worrisome. And let me just say that, you know, the training standards in California and many other states are not super strict. You're looking at about six hours of initial training, so it's not a massive amount of education.
REHMA.C. Thompson, he's a reporter for ProPublica and PBS/Frontline. A.C., we're going to take a break in the program. Now, I wonder if you can stay on with us for the rest of the program.
REHMAll right. Short break. Your calls when we come back. Stay with us.
REHMAnd welcome back. We're talking about assisted living facilities, how their growth has just expanded so rapidly in the last 20 years. Here with me, Dr. Joanne Lynn, a geriatrician and director of the Altarum Institute Center on Elder Care and Advanced Illness. Larry Minnix is CEO of LeadingAge, an organization whose members include not-for-profits in the long term care community, and Becky Kurtz, director of the office of the Long-Term Care Ombudsman programs at Health and Human Services.
REHMAnd joining us by phone is A.C. Thompson, a reporter for ProPublica and PBS/Frontline. Larry Minnix, what do you make of A.C. Thompson's report?
MR. LARRY MINNIXWell, I think it was a timely report. It's an important report. What happened to those people shouldn't happen to anyone in long-term care. Everything you saw there is preventable and manageable with the right protocols in place, with the right staffing levels in place, the right accountability. The issue with assisted living -- and you mentioned that it's been developed over the last 40 years for people who can't live at home anymore but don't need or want to go to a nursing home and the...
REHMWhat's the difference? That's what's in people's minds.
REHMWe call it assisted living. But to a certain extent, for those individuals who need the kind of help that A.C. was talking about, isn't it nursing home?
MINNIXWell, it doesn't have to be because nursing homes increasingly are for people with even more complex conditions. And the public wants an alternative to the nursing home. But the problem with some places like you saw in Emeritus, they're getting -- they're buying the sizzle, and they get there and there's not much steak because the standardization of care treatment, so forth is missing.
REHMBecky Kurtz, as an ombudsman with Health and Human Services, what kinds of standards are in place for assisted living facilities, both profit and nonprofit?
MS. BECKY KURTZFirst of all, thank you for the opportunity to join you today.
KURTZThe nursing home world is predominantly regulated by federal standards. There are federal standards in place for those facilities that receive Medicare and/or Medicaid.
KURTZThat is not the case in assisted living. Or -- I also want to say a term issue here. Different states license these things differently and even call them different things. So some states, you're going to hear the term residential care facilities. Some you're going to hear assisted living. Some you're going to hear personal care homes. The -- even the terminology we use, much less what are the services that can legally be provided and then what are the standards so that we can assure quality and accountability, there's huge variation among the states.
REHMWhat you're saying is that the federal government does not oversee or regulate so-called assisted living facilities.
KURTZThat is true.
REHMDr. Lynn, you have been in this field for a long time. Tell me what's going on.
DR. JOANNE LYNNOh, the main thing going on is that we're completely turning our eyes. We're pretending there isn't really a problem. And we certainly are doing no effective planning to actually address the issues. It isn't just assisted living. It's that we are trying really hard not to notice that most of us will have a few years of substantial disability at the end of life, and we have no serious public plan for how to deal with it.
DR. JOANNE LYNNAssisted living is only part of the problem. It's a new part, and therefore, has very little regulation. And there are excellent facilities and people who do a really good job, and there are a lot of real make-a-buck entrepreneurs coming into the field. And it feels so much better than a nursing home. They look nice. They have pretty gardens. There are new buildings, you know, everybody thinks, well, this isn't really a nursing home.
LYNNWe aren't really taking them on to a nursing home.
REHMSeparate apartments, right.
LYNNYeah. But then, you know, they have no real plans for how to move a person along into a higher level of care, and they basically use up what the family and patient or the client has in assets. So they spend down to Medicaid, and then have no assets. And Medicaid picks up as they go into a nursing home. So it's very much a public problem. We're already paying for about 20 percent of assisted living through Medicaid in some states.
LYNNAnd we are spending down people's assets in these private enterprises that have almost no regulation and are highly variable at best. So there's a lot of public nexus here. We've got to start really approaching this as how are we going to take care of half of us having three years or more of serious disability at the end of life?
REHMA.C., did you, in doing your research, talk to any members of Congress, any folks within the government about what Joanne says, namely, that we're turning our eyes away from this problem?
THOMPSONOh, you know the kind of work that I do. I should probably not comment on that. But I will say that I talk to many, many people outside the government who told me that they felt, in general, this was a massive problem. And they felt like, you know, we've been very focused on finding a cure for Alzheimer's and not so focused on ensuring that people who have dementia and Alzheimer's today and in the future, if we don't find a cure, that we're caring to them well and that we're treating them well and that we have the best practices developed for how to care for them.
THOMPSONAnd what a lot of people have told us is they felt like what we're seeing is sort of the warehousing of the cognitively impaired elderly. And that was a thing we heard over and over again from geriatricians, from advocates and from others.
REHMBecky Kurtz, help us define assisted living as you now understand it. What does it mean, and how are assisted living facilities different from nursing homes?
KURTZWell, again, it's going to depend on the state. But I'm going to give you something very general. Typically, assisted living settings look at providing personal care, assistance with activities of daily living as opposed to the medical nursing interventions that nursing homes tend to have. And skilled nursing home, which receives Medicare reimbursement, has rehabilitation and more intensive nursing services.
KURTZHowever, having said that, the majority of the states provide at least some level of nursing services to be provided in assisted living. So it's very murky when does the nursing service piece -- when is the individual no longer appropriate, no longer able to receive that service. Let me also say there's another piece of this spectrum we need to keep in mind. In addition to facility-based settings, there are also services that go into people's homes. And that's also a very important part of the spectrum of care options.
REHMBut I think what we're confining our conversation to here are facilities that call themselves assisted living.
KURTZRight. But the reason I bring that up is because when people are entering this world, when their family member needs care and they're trying to look at what do I do, I think, too often, people think, ooh, I've heard bad things about nursing homes, whether those are true or not. I've chosen assisted living because it's prettier although that's not always true.
KURTZBut sometimes that is the case. And it's maybe a newer building. Maybe they've had a better marketing campaign. And then they haven't even looked at, well, would it be possible to bring services into my home and provide the care here? So the point is that it is part of a decision making of whether to go to assisted living...
KURTZ...whether you've looked at all of the possibilities.
REHMBut I really want to confine this to the facility, the building, the nursing, the providing of care, Joanne.
LYNNYour phrasing is really interesting because you so naturally call it a facility. In the field, there's tremendous debate over whether this counts as living in a home and community setting rather than a facility. So most of the regulation such as that exists counts assisted living as living in an apartment, and therefore it evades all the facility issues and labels.
LYNNAnd so that's exactly the nexus -- that is, the problem -- is does this really count as a facility and should be thought of as really being a close relative of a nursing home, or is it really an apartment with few services?
REHMLarry Minnix, what is the difference between a for-profit and a nonprofit in this assisted living industry?
MINNIXUnfortunately, in the for-profit world, it is often driven by return on investment to stockholders...
MINNIX...and many of these people are in the real estate business. During the commodities business, they buy and sell these things, and they're -- that's their primary motivation. In the not-for-profit world and in some of the for-profit world, especially locally owned assisted living, care comes first. And the recognition if you do a good job on quality, you're going to have a successful business model 'cause the demand for these services is there.
MINNIXBut if you're driven by Wall Street, which it sounds like Emeritus was, then it's bottom line, bottom line, bottom line, keep the beds filled. The biggest issue in assisted living that has to be addressed is who can you responsibly care for, and how do you know, so that when you admit someone, you can look the family in the eye and say, we believe we can meet your mother's needs? And the day you can't meet her needs, you have to say, we can't help her anymore, so you're going to have to find a higher level of care. And the business, the money, has to be secondary.
REHMYou know, it's fascinating to me that at least some of these assisted living facilities do have a higher level of care for those suffering from severe dementia or Alzheimer's.
MINNIXYes. What we find in the not-for-profit world is that many of our assisted living are part of a campus or a building that offer levels of care which makes continuity easier. Plus, you have on site medical and nursing and social work, professional leadership so that if someone gets in trouble in the assisted living, you have some backup.
REHMAnd you're listening to "The Diane Rehm Show." A.C., you talked about some of the people involved in making decisions for the facilities at Emeritus. What kind of training did you see involved? You talked about eight hours -- eight hours doing what?
THOMPSONYou know, that's eight hours of all different kinds of training from what we've seen from -- as far as Emeritus is involved, on the dementia side. You know, I would point out that when we met with the company and interviewed them about that, they acknowledged to us that their training program for caring for people with dementia that no medical doctor had been involved in developing it, that they might have had -- they had a psychologist involved, but not a medical doctor.
THOMPSONSome people we talked to didn't think that was so great. They thought, you know, if you're going to come up with a training program, consult with experts in the field of Alzheimer's and dementia. You know, the training stuff, even when you get into the state requirements, it's pretty remarkable. There are some states that really have very, very, very lax standards.
THOMPSONAnd, you know, states like California, if I wanted to run an assisted living facility, I would take a 40-hour class, and I would be -- you know, take a test and become licensed to run one. And I could run a small facility at that point with just a 40-hour class. Now, I -- I'm not totally sure that's enough time. It might be, but I'm not sure I would trust myself to run a facility or a small building with a number of frail and elderly seniors with that kind of training.
REHMJoanne, you started your points by saying we've been turning our faces, looking the other way. Now that this industry has grown so much and so rapidly, how soon would you expect the federal government to get involved, or do they not wish to get involved?
LYNNWell, the federal government has to get involved. Under some provisions of the Accountable Care Act, they must issue regulations on a couple of points so that, for the first time, the government will have to begin to define the industry as a -- at a federal level, begin to state some requirements. There's tremendous fighting about exactly what they will say and how. But I think by the beginning of next year, there will be at least an entry of the federal government into this arena.
LYNNBecky can speak to the Ombudsman Program, which is already present in these facilities, although because this funding is so slim, it's not as present as one might hope. But -- so we're beginning to get a little bit of federal involvement. But I feel that that will be only the beginning of a stepping stone. We...
LYNNWell, we have to begin to see the problems of the population, that it isn't really a problem of this industry alone, but how is it that you're going to build the capabilities to help people at home, the proper facilities for people to advance to and how we're going to come to be proud of them. You know, we can't just think, well, this is where we warehouse people as, you know, Mr. Thompson was saying.
LYNNWe have to be thinking, well, it's so good that my community has thought this through and we have the right sequencing of facilities and services. We are able to support people in the right ways. We're doing it at a lower cost. There's something really outrageous that I can write for a $100,000 drug with a sweep of my pen, and Medicare will cover it. But I can't get respite for a caregiver or Meals On Wheels when there's a two-month waiting list because of the sequester. We have so pervasively turned our eyes from this problem that the opportunities are rife.
REHMDr. Joanne Lynn, she's a geriatrician, hospice physician and director of the Altarum Institute on Elder Care and Advanced Illness. Short break here. When we come back, your calls, your email. I look forward to hearing from you.
REHMAnd welcome back as we talk about the care given, received, what to expect in assisted living. Now, mind you, we're leaving aside nursing homes. This morning, we are talking about assisted living care. Let's go first to Annandale, Va. Hello, Mark. You're on the air.
MARKYeah. Yeah. You want to try and leave nursing homes up, but you can't because one the reasons people are going to assisted living is because of cost which, I mean, I saw the ProPublica program, it was good but it ignored the issue. Assisted living is a lot cheaper than nursing homes, and the alternatives are -- you know, people would choose it, and it may be a lesser standard of care. And you may say that these homes are scavenging for patients, but the families are desperate to try and find an affordable solution which isn't there because the health care system isn't providing anything.
REHMAll right, Mark. Thanks for calling. What about cost? A.C.
THOMPSONYou know, it's a great point, and I appreciate it being made. You know, one thing actually, in general, that we found. it's a little bit different than that, which is that this was a story that was affecting people of means in many ways and that, you know, the people that are going into facilities like those run by Emeritus oftentimes are paying a lot of money out of pocket.
THOMPSONIf they're not in a state that accepts Medicaid for assisted living, then they've got to pay three or five or six or $7,000 a month to go into these facilities. And so actually we saw something slightly different than that, but I appreciate the point.
REHMAll right. Let's go to Manchester, N.H. Sherry, you're on the air.
SHERRYHi. Good morning, Diane. And first of all, thank you very much for addressing this issue. I've worked in older adult services for over 15 years, and I am also a former staff person in assisted living. And I can tell you from a personal experience that the location where I was employed certainly are more interested in money than in care. And senior staff are retained only through census numbers, not according to quality of care. And I so agree with the comments on dementia care training.
SHERRYThere is not sufficient dementia care training provided for professional caregivers in the industry, and it's a serious issue. And again, we are talking about costs because it is a costly issue to train staff, and they do need more than 10 hours or seven hours. They need at least 30 to 40 hours of training. And, again, you know, it's the dollar sign that prevents the training.
REHMAll right. Thanks for calling, Sherry. What about that, Joanne?
LYNNI mean, it's just, again, the symptom of trying to pretend that everything is OK and that we can do it on the cheap. It's going to be expensive to take care of very sick people. The question is can we make it more appropriate and bring it in at a lower price. We run up enormous bills on the medical care side, and yet we are skimp everywhere on whether we're going to provide another aide or a recreation or somebody at night. We've got to rebalance our intentions.
REHMIndeed. Larry Minnix, what kind of training is provided to aides, assistants coming into assisted living facilities? How are they trained? How long are they trained? And how are they paid?
MINNIXWell, you have to sort of -- the acid test of training is that the most trusted people in assisted living are those that work between Saturday night and Sunday morning on an Alzheimer's unit. Those have to be the most valuable people in the place because they're there oftentimes by themselves, and you have to have a lot of confidence in their judgment.
MINNIXSo we say to people, start with the direct care worker, which is the most essential and least appreciated amongst all of long-term care, especially assisted living. You have to pay them well, training and development on the front end. Some states require 40 hours before they are assigned work. And some states have ongoing requirements. If you ask the organization, they should be meeting or exceeding those kinds of standards.
MINNIXAnd one of the best proxy we have for quality is staffing. And so when consumers go in, they want to ask, what is the turnover? What's the retention? How do your staff get trained? Can I meet with them and talk with them? You want naturally therapeutic people working with an Alzheimer's resident. Not everybody can do that.
REHMA.C., do you have any idea how much those aides were paid by Emeritus?
THOMPSONYou know, we went all over the country. And we heard a lot of different numbers, but they tend to be pretty similar. They tend to be, you know, eight, nine, $10.40 now, those kind of pay rates, and many of times, these were in quite expensive areas.
MINNIXWe believe those folks are underpaid and under supported. And by supported, we mean, how do you back them up in emergencies?
REHMAll right. And do you think, Becky, that at some point, the government is going to have to get into both the training of those aides as well as what they're paid to do, what they do?
KURTZWell, I think the real question is going to be, at what level of government? Is it going to be states? Is it going to be federal?
REHMStates aren't doing a very good job.
KURTZIt's a mixed bag in states. Some states are doing a far better job than others. And so it's very important that the -- both the provider side as well as the consumer and consumer advocate side engage their state officials because that's really where those decisions are being made right now. At the federal level, there's a couple of different things going on currently.
KURTZWe, at the Administration for Community Living, support the Long-Term Care Ombudsman Programs that are operated through states to resolve consumer complaints. And also, the whole issue of public reporting and what kind of information is going to be available to consumers is something that HHS has started to wrestle with so that consumers can be smarter consumers, more well-informed consumers of what they're purchasing.
REHMAll right. To East Haven, Conn. Hi there, Gail. You're on the air.
GAILOh, thank you so much. I am an advocate here in the state of Connecticut with family councils, and I know we're not talking about nursing homes. The skilled nursing home industry, whether you go into that or whether you choose nursing home or in the future, now, you're going to be able to age in place at home, it's very, very difficult, I think, everywhere.
GAILBut here in the state of Connecticut, the ability to educate family members to advocate for the changes that you're discussing today, it's very hard when you're trying to file a complaint, say, with the Department of Public Health. They're short staffed. They don't get to your complaint right away. Families are run down, they're tired. And I would like to see the ability for family members, whether it's a family council in a nursing home, to have more ability to advocate legally to get these federal regulations, so that there is some kind of guidance at the federal level.
REHMThat's really a good point, Joanne.
LYNNYes. I've been telling people more and more as I give talks, don't keep suppressing the anger. Don't keep trying to make it papered over. Tell families to raise holy hell. That they've got to be talking to their legislators. They've got to be talking to the CEOs and the leadership of the organizations. We've got to bring this out of the closet because the caregivers -- the family caregivers that care so much only gradually come to realize just what a terrible situation they've been put in.
LYNNAnd by the time they get through it, as you say, they're all worn out, and they don't have much to do. But they could start really raising the issue because we're going to be the next ones.
REHMExactly. Larry Minnix.
MINNIXYes. The issue of public accountability and shining a light on assisted living in the nonprofit sector, the board of directors is a known group of citizens in the community. When I was a CEO of an organization that offered various levels of care, if somebody had a bad experience -- I heard about it from an official at the university or the Methodist clergy's office -- an accountability is instant. In the for-profit...
MINNIX…investor-owned world, who do you call at XYZ Investment Group to report some of the things that were reported by Mr. Thompson?
REHMInteresting. Now, A.C., I want you to hear this email that we received from (unintelligible) are very friendly and caring. You said you did talk with Emeritus officials around the country. Is that correct?
THOMPSONYeah, I sure did.
REHMAnd so, clearly, you found differences in different spots?
THOMPSONYeah. We actually did. And, you know, this is a company that has the capacity to house about 50,000 people. I'm sure lots of their facilities are great. I'm sure lots of people have really good experiences there. It's -- obviously, it's a subjective thing, and there's going to be wide variation. We heard about a lot of variations from place to place. If a facility is doing well, making lots of money, that typically things will be nicer for the residents.
THOMPSONThere'll be more staff, there'll be, you know, nicer amenities, that sort of thing. And then we heard about places that weren't so good. I'll share with you. I got an email from an executive director at a facility today, who said, you know, nothing in your piece struck me as untrue. It's all the things that I'm seeing. So there's definitely back and forth now.
THOMPSONI'd also point out that the company has very, very aggressively put its employees and people living in these facilities and the family members of those living in the facilities to post positive messages to the media, post positive messages about the company to the PBS website and the ProPublica website. So I'm a little bit skeptical at some of these things coming in. But I'm sure lots of people have good experiences for sure.
REHMI had the same skepticism, but at the same time felt it was important to read that message. Here's a question from Twitter, which Larry, you have answered somewhat. It says, "What are the most important questions to ask when looking into facilities?"
MINNIXWell, in the absence of public information -- two things. One is reputation, reputation, reputation. Ask other people, ask families currently using the community and find out who has -- is well-respected. Secondly, when you go to visit, use your five senses, and your five senses will tell you a lot. And then I would ask, who is the most professional nurse or doctor or physician involved, and what is their oversight? What are your staffing patterns? I'd like to interview some of your staff. I'd like to watch what goes on the dining room or in an activity to judge the quality of the interaction.
REHMAnd you're listening to "The Diane Rehm Show." Let's go to Cape Coral, Fla. Hi there, Barbara. You're on the air.
BARBARAOh, hi. Thank you so much, Diane.
BARBARAIt's very interesting. I've been working in the -- I work as an -- I had been working in. I am basically, basically retired from working. Thirty -- this happened 30 years ago in about 1980s so and so when everything was beginning to start. And the facility that I worked in was absolutely super wonderful. It really and truly was. We had adequate help, we had adequate wonderful nurses and aides and directors coming in. However, I did leave Connecticut. And I'm also a Connecticut girl like the one from East Haven.
BARBARAI don't know where she worked, but I worked at Whitney Spencer, which was that time a wonderful place. I moved to Florida with my husband and began to work here on the many of the assisted living. And I have found out it's certainly not the same. And everything that everyone has said is basically the same thing. It is expensive. Don't let anybody kid you. It goes to five to $6,000 (word?)...
BARBARA...you know, people. So it is an expensive situation. This is for assisted living, as well as...
REHMBarbara, we're almost out of time.
BARBARARight. So what I'm saying is what it comes down to is dollars and cents.
REHMOf course, it does come down to dollars and cents. A.C., in the Frontline documentary, one couple pays $7,000 a month for assisted living. Did you find that this was typical?
THOMPSONThat number for combined two folks is not unusual at all. That would be about what you'd see -- actually more than in a lot of cases.
REHMLarry, what about the challenges of treating people with dementia? I would think if that assisted living facility has a dementia care floor or area that that would be even more expensive.
MINNIXIt would be more expensive, and it needs to be more tailored. In terms of the training, there need to be more staff available. And they need training not only in things like prevention of pressure ulcers and the importance of nutrition but how do you relate to people with dementia in a healthy therapeutic supportive way.
REHMFinal question to you, Dr. Joanne Lynn, should assisted living be distinct from nursing homes? Are we going forward -- going to see even more of a blur?
LYNNI think that we're going to go through a period of quite creative chaos. The skilled nursing facilities are essentially extensions of hospitals now. The old-fashioned nursing home has become the refuge of people who are quite, quite disabled. So we need something that provides for the people who are little less disabled. And whatever we call it is still up in the air, but it's not going to be home.
REHMDr. Joanne Lynn, a geriatrician, Larry Minnix, CEO of Leading Age, Becky Kurtz, she is at HHS, and A.C. Thompson, a reporter for ProPublica and PBS/Frontline. We got links to a lot of information on our website at drshow.org. Thanks for listening. I'm Diane Rehm.
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