A memory care unit is a specialized form of long-term skilled nursing that centers on the care of residents with Alzheimer’s disease, dementia and other types of cognitive issues. By law, nursing homes advertising memory care are obligated to meet various requirements, including specialized training and treatment. In this week’s episode, nursing home abuse lawyers Rob Schenk and Will Smith welcome guest Michael Splaine of Splaine Consulting and Cognitive Specialists LLC to discuss how memory care differs from typical skilled nursing care.
Schenk:Hey out there, welcome back. My name is Rob Schenk.
Smith: And I’m Will Smith.
Schenk: And we are your hosts for this episode.
Smith: So today we’re going to be talking about a very important issue. There are a lot of complications that arise from getting older and requiring assistance in the long-term care setting, but one of the most recognizable is issues with the mind – Alzheimer’s, dementia, issues with memory. And these types of residents, of people, require different strategies and different treatments than others. As we know right now, as we’re currently speaking, there’s no cure for Alzheimer’s, but there are ways that you can make life better for people that have it, and that’s why we have somebody coming on the show today to talk about memory care units in the long-term care setting.
We’re going to have Michael Splaine, who is the owner and principal in Splaine Consulting, an advocacy and government affairs consulting firm based in Washington, D.C. Prior to starting this company, Mike was director of State Government Affairs in the Public Policy Division of the U.S. Alzheimer’s Association, leading its grassroots network to accomplish state police priorities, including comprehensive state Alzheimer’s plans.
As principal in Splaine Consulting, his company has a variety of nonprofit and commercial government affairs and advocacy engagements, including the Alzheimer’s Association CDC Healthy Brain Initiative, Alzheimer’s Disease International, and consulting with hospitals on their care of persons with cognitive impairment. So he’s got quite the background and he’s very passionate about this, and we’re very privileged to have him on the show today.
Schenk: Michael, welcome to the show.
Michael: Thank you.
Schenk: Great. So as Will was saying just a second ago that the memory care unit is kind of like a special location in a nursing home, but we didn’t get too much into it, but that’s why we have you on. Can you kind of just tell the audience in general terms what a memory care unit is in a nursing home setting?
Michael: So memory care unit has become kind of the marketing or the art term for Alzheimer’s special care unit in either assisted living or nursing homes. The movement towards experiments in special care actually goes back three decades in the United States, and we’ve evolved a number of different terms, and I think the preferred term from the nursing home care industry is to say memory care unit.
As a dementia expert, one of the challenges I have with the phrase memory care unit is it puts, as my grandfather used to say, the emphasis on one syllable, that being memory as the cognitive impairment that counts. But people with progressive dementia have problems, lots of different kinds of problems with thinking. They can have problems with word search, they can have problems organizing simple tasks. Certainly short-term memory because it’s the gateway to all new learning in the brain, is super, super important, but as a guy that’s been around this field a long time, I get bristly when I hear “memory care unit,” because it just puts the accent on one of the multitudes of cognitive impairments that people with dementia have.
Schenk: That makes sense. I guess I never kind of considered it that way. That does make a lot of sense.
Smith: And can you – I think this would be helpful too, because I know there’s a lot of confusion out there on this, can you – and you don’t have to get into the weeds at all, but can you briefly describe how dementia is and how it’s related or how Alzheimer’s is related to it?
Michael: So I think of Alzheimer’s and dementia this way. When my youngest daughter one night popped an 104-degree fever, we ended up going to the emergency room to meet with our pediatrician. And it would have been most helpful if he looked me in the eye and said, “Mr. Splaine, your daughter is febrile.” Well whoop-dee-doo.
Smith: Right, yeah, yeah, yeah.
Michael: Does she have a urinary tract infection? Does she have the croup? Does she have some other horrible condition that’s popping her fever to 104? So when I think of the difference between Alzheimer’s and dementia, it’s this way. Dementia refers to a cluster of symptoms – memory loss, confusion, disorientation of time and place. Alzheimer’s disease is the largest cause of dementia – or fever. Alzheimer’s disease is the largest cause of progressive, irreversible dementia in older people. And people do use the terms interchangeably, but in fact, multi infarct dementia, dementia from small strokes or in some cases large strokes, is the second leading cause of vascular season, the second leading cause of dementia in older people, and it has a different progression. It is unchangeable from the five licensed Alzheimer’s treatment drugs, and differentiating between the different forms of dementia, it’s subtle, but it’s starting to get there in terms of the state of the art in practice, in medicine. So for me, that’s the difference between Alzheimer’s and dementia. Alzheimer’s causes dementia. It’s the leading cause of dementia, but it’s not the only cause.
Smith: Got you.
Schenk: Mike, this is really interesting. A lot of times during the progression of this show, Will and I, even though we are attorneys in this industry, we’ll be kind of – we’ll learn from our guests that certain nomenclature might not be good for the public or we might need to think about what these things mean. So we had talked about memory care units – that’s what the title of the show is, that’s what a lot of the public knows. What would be a more accurate way to put that? How should we be referring to this?
Michael: I think Alzheimer’s care unit, but I think it’s also important to realize that memory care units, particularly in skilled nursing facilities, ask a premium payment for what might be additional services. And from a consumer point of view, in fact Georgia’s one of the number of states that has a legal requirement, you can look it up in Title 31, Article 7 if you want to be lawyer, but you can look up the legal requirement that anyone who markets Alzheimer’s special care, whether they call it memory care unit, dementia unit, if they offer specialized care, they must disclose to the consumer, people seeking information about those services specifically what makes this special care unit special. And this gets to what is the difference between, say, an ordinary nursing home room and services and special care. Special care units are presumed to be operating by a guiding philosophy and mission, that they have specific admission and discharge requirements.
Why is that important? Because if people enter an Alzheimer’s unit at an early stage of the disease, what they progress or have other physical conditions that make the judgment of the people running the unit, the Alzheimer’s unit, less appropriate for them, knowing up front that Dad might not live out his life in care in a special care unit might be useful to families. Alzheimer’s special care units are supposed to have defined programs and services, and especially important is additional staff training.
Schenk: I was going to say – that’s exactly, that’s directly from the Georgia regulations.
Michael: That’s directly from the Georgia regulations. So if somebody’s seeking care or is in care that is watching this show or listening to this podcast, this disclosure requirement, it’s consumer protection law. It doesn’t presume to judge the quality of these things, but really, what am I paying a premium price for specifically? I think that’s a really important piece of consumer regulation.
The other thing that allows from a care point of view, that allows a lot of different interventions, a lot of different ways to skin the cat and take care of people. For example, you may find a special care unit that does an awful lot with music, and that might be a terrific support and meaningful activity for the people with dementia that live in that community. You might go two communities down and they’re supported with extra field trips. I mean I’m making the point that there are a number of different ways to pay more attention and give specialized attention to people with dementia who are in care, and they’re not shaped by – this isn’t a regulation saying you have to do one or the other. It’s just you need to tell me as a consumer what it is you’re doing that makes your special care special.
Schenk: That’s right. And so just to be clear, that even if your loved one is not in a “memory care unit,” that’s the minimum. The memory care unit should be doing above and beyond that if you’re paying for it.
Michael: That would be what we would assume and they frequently are. Having said that, most people with Alzheimer’s or other related dementias will not get specialized services, and specialized services really become the – but on the other hand, specialized services have been proving grounds to make all services Alzheimer’s capable.
Schenk: Mike, and we know what the Georgia regulations say, but in general, can you speak to the type of specialized training that a staff member would need to undergo to qualify as someone that can render care in that unit distinct from just a normal nursing home unit. Like is there a general across-the-board training that’s done?
Michael: Well I would say a couple things, and I’m going to generalize here, but I would say first of all, everybody gets trained that comes in contact with a person, from the janitor to the food staff to the skilled nursing facility administration. And so everybody has a grounding in the philosophy of the unit, how they’re going to approach working with the persons with dementia in their care and have some basic skill building with communicating with a person with dementia the right way. So I think one thing that I’ve observed that distinguishes training in memory care or training in special care units is that it’s everybody.
I think second of all, it’s over and above what people come through the door with. By federal law and as supported very strongly by states, certified nurse assistants start with a floor of about 75 or 80 hours of training, pre-employment training and a test that they must pass in order to get their certification. Dementia is part of that 80-hour curriculum but it certainly doesn’t dominate that curriculum. So I guess the second thing I’d say is that the direct care staff get more support for ongoing training.
And the last thing I observe and I don’t observe it universally, but the last thing I observe is the training is really built around good principles of adult education and not merely stick a video tape in a machine and come back in an hour and say, “Thanks,” and go on with training. And I know that sounds like I’m a little cynical, but I think as an adult educator and as an adult educator in Alzheimer’s, I mean I can see the difference between a well-constructed training that has strong learning objectives, good backup material that’s interactive, and it gives the people that you’re training a chance to exercise that new skill before they actually use it with patients. I think the quality, if you will, the quality of the teaching style in memory care units may be above and beyond what we may see in more ordinary units. Make sense?
Smith: Yeah. Absolutely.
Schenk: Yeah, it does make sense. Mike, we’ve talked about the staff side and the training side. Going back over to the resident side, is there a particular type of individual that is recommended to go into memory care unit versus a regular unit at a nursing home? Obviously it’s somebody dealing with Alzheimer’s issues would be a candidate, but like can you delve into that?
Michael: Well not so obviously. I’m going to say that going back to the roots of Alzheimer’s specialized care 30 years ago, one of the requirements for somebody to be able to be cared for in an Alzheimer’s special care unit is a diagnosis of Alzheimer’s or closely related disorder. And this was really important 30 years ago when very, very small numbers of people actually got a formal diagnosis. But having said that, we’re still in a situation in America today where only about 40 percent of people with Alzheimer’s or related dementia actually get a formal diagnosis in their medical record.
So what this emphasis on a diagnosis from a medical facility or a physician in the medical record with the steps to that diagnosis being taken, what that does is a couple of things. It’s kind of quality assurance that you’re matching up the program and the services that are specialized to the right people. It’s also quality assurance in that people that maybe merely only got a label and an assumption of dementia, or as I heard recently a family said, “Well the doctor said thank God that Dad only has a little touch of dementia in his brain,” like what does that mean? Anyways, but there’s a lot of labeling, unfortunately. And there are treatable dementias. There are treatable and reversible dementias, and I guess as somebody who’s seen a lot of care and seen a lot of people and said, “I wonder whether or not that guy really has Alzheimer’s disease on that unit because they’re so different than some of the other people being cared for,” I’m just saying that diagnostic criteria becomes really important.
Michael: So it’s central.
Schenk: That makes sense. Jumping back, Mike, to staffing, there was a – I can’t remember what episode we were talking about this, but at any rate, I feel like the staff, in terms of training, in terms of execution of what they’ve learned and working in a memory care unit, I think one of the more important things is understanding triggers. And we had a guest on talking about there was a nursing home resident who kept going through her – she would walk into everybody’s rooms and go through their drawers looking for magazines and papers, and what the individual staff there realized was that this person was a librarian.
Smith: Ah, yeah, that’s right.
Schenk: And she was in her mind going on a mission to organize the books, so they recognized that trigger. So what they did was they put several index cards in her room and she never wandered again, and she would just flip through the cards as they were an old card catalog. So that type of going the extra mile to think about what the triggers are, I feel like that would be an attribute of the specialized training would be.
Michael: Yeah, well you’re talking about trigger for possible difficult or dangerous or unacceptable behavior. Anybody that does good Alzheimer’s care, I don’t care if it’s a terrific spouse that’s at home taking care of their wife or husband or somebody who works in a care facility – we know that the best Alzheimer’s care is patient-centered care, and that behavior has meaning. And part of our job as people who are temporarily able-brained in the land of people that have impaired brains is to figure out their story and to figure out, yeah, and to believe though that behavior has meaning, even nonverbal communication has meaning.
People – we have a myth running around. We do a little work in consulting on hospital care for people with dementia, which is another whole day’s show, but one of the things that we hear as we’ve been doing this work is that you can’t assess pain in people in middle or late stage dementia, and by the way, because their brain is affected by Alzheimer’s disease, they don’t feel pain anyways. And there’s an eight-letter word that I use that starts with “bull” that I use when I hear when I do trainings in hospitals that I won’t say now even if we’re on a podcast, but there’s this mythology out there about people with dementia.
So I think person-centered care means knowing their story, knowing their history, but also believing their behavior has meaning. And most people in the late stages of dementia who are having difficult behavior moments are either telling us they’re hungry, they’re thirsty, they’re bored, they’re lonely or they’re in pain. You’ve got to believe the behavior has meaning.
Schenk: Yup. That’s exactly right. Well Mike, let’s put the hypothetical in that we have a family with a resident that qualifies for entering into a memory care unit. From a physical characteristic standpoint, what’s different about that unit versus a standard unit? Is the lighting different? Or are there any differences from a physical standpoint?
Michael: The practices in this regard are all over the map, and I don’t know that there’s – other than lighting, I don’t know if there’s anything that’s been proven through advanced study, including some random clinical trials, to be effective. I was part of a team in the late 1980s, the National Institute on Aging invested a serious amount of research money to say, “Okay, what makes special care units from an environmental point of view?” And, you know, was it the color of the paint? Was it having walkways?
I think one thing that distinguishes special care units though is security. It frequently has meaning. It has an agenda. It’s a meaningful activity if we can understand it. But one thing that distinguishes almost all special care units is that they have some way of ensuring the physical security – a little more physical security – for the person with dementia. They do that a lot of different ways.
I think second of all, lighting – you will especially – one of the things that can happen to people with dementia is they can become fearful with the oncoming of darkness, particularly in winter months in northern climates, and this is a syndrome that has been labeled “sun-downing,” which I think is a terrible way to talk about humans, and what you see many facilities do is to install a rheostat, a dimmer, so they can actually add extra artificial light and mellow out some of those difficult behaviors that pop up through a nonpharmaceutical intervention. So you see that as a common characteristic.
Areas for walking and pacing, a segregated meal area and being able to support people who have very different needs in terms of support to eat. One of the things that happen with our folks with Alzheimer’s in the latter stages is they have real trouble with swallowing, and if you have a way to help your persons that are so affected be able to eat food that may be sat apart from the rest of the main dining room, you see that a lot.
I think there are some other little nuances, but those are the big ones right there. A lot of special care units, I suppose, also, depending on what chain you may go visit, a number of assisted living chains, they have a design that they’ve implemented that they think is effective, I would say magical, but maybe I should say effective. And so you’ll see a particular brand of assisted living will have their branded special care unit that they stipulate does magical things and it may or may not.
Schenk: Speaking of magical things, Mike, you mentioned earlier that hypothetically a memory care unit might offer music therapy.
Schenk: Can you talk about more programs like that? What are some other common programming that you see in these special care units? I’ve seen stories where people will take puppies, but I don’t know if that’s actual special care or just nursing homes in general. So can you address what are some things that you see?
Michael: So I think – gosh, music, structured reminiscence programs, cooking together, activities that are evocative of emotional memories, support for families – I mean specialized support groups, education programs for families, coping skills for family caregivers. Many people – let’s be clear, most people are cared for for most of the length of the progressive dementia illnesses in the United States, most people are cared for at home by families for most of, what for them, is going to be a six to eight to 10-year journey.
My mom has said publicly and privately, she’s 89 and she’s cognitively back to where she was when she was 12, but she’s also said that she knows that we dealt with Dad and his cancer for six months. You couldn’t imagine a nine-year process. And she’s a patient, wonderful woman. So I think family support is an emotional support, intellectual support, is a key program.
But along with that, that extended family of staff, because I guarantee you people who work in care form attachments to the people they care for, and so real attention to grieving, to stress, to the real psychic pain of caring for people and losing them, I think that’s another kind of program that we see very, very commonly in special care. And as I said earlier, I think what we learn in special care transmits itself through a lot of different dissemination vehicles, transmits itself – it almost becomes the proving ground for other things, like again, most people with dementia are not cared for in specialized care. They’re care for in ordinary or usual care even though they have a dementia.
Schenk: And that’s something we very rarely talked about on this episode is actually educating the family in terms of what their feelings are and educating them on that component of their health.
Michael: Well and we do a workshop for families that’s called “Thoughtful Hospitalization,” and one element of that – it’s a 90 minute workshop, we have a lot of fun with it – one element of thought for hospitalization is to talk through and discern the very difficult questions of end of life treatment.
Schenk: That makes sense.
Michael: Am I going to negotiate a person going in peace in care as opposed to, “Oh my gosh, Dad’s dying,” the fire drill of getting the emergency medical ambulance there, racing them off to the hospital, completely disrupt… You know, sometimes families need to be able to negotiate and think through is going to the hospital one more time the right thing to do for Mom or Dad, my wife, my husband. It’s hard. Don’t get me wrong. It’s difficult. But it is one of those choice points that those of us who are able-brained that have the duty, the responsibility of care for another cognitively fragile person, it’s something we have to come to grips with for them and try to use our best judgment in the absence of them telling us what they want. It’s really hard.
Schenk: Well that’s right. Well Mike, if an audience member out there wants to get in contact with you for any of this stuff that we talked about, what’s the best way for them to do that?
Michael: I mean we’re pretty easily found if you use the Google machine. I mean our company is Splaine Consulting. I don’t know – ask my friends at the Alzheimer’s Association in Georgia for my private phone number. I don’t know. I think because of social media, unfortunately because I would be the most private person in the world if I wasn’t an entrepreneur, and you guys know exactly what I’m talking about. You do things that you would never do because you’re in business and you need people to call you.
Smith: We talk about it all the time. I can’t get rid of Facebook because of this.
Michael: That’s right. So we’ve got a Facebook page, we’ve got a LinkedIn, all that stuff. And we’re in Maryland so we’re on the East Coast, and we don’t do a lot of individually. We just say we work in Alzheimer’s from a systems and policy perspective. We’ve worked on Alzheimer’s policy from local to global, including advocating on behalf of people with Alzheimer’s disease and the families with the UN and the WHO, so we’re systems people. We’re not insensitive. You couldn’t be after all these years. I’ve been working with people with Alzheimer’s, like I said, since 1986. You couldn’t not be personally sensitive with folks, but we aren’t case workers, just so people don’t think we’re social workers for individual cases.
Schenk: That makes sense.
Michael: But we’re glad to talk with anybody who reaches out.
Schenk: We appreciate you clarifying that. Well great, Mike. This has been fantastic information for everybody. We really appreciate you coming on the show.
Michael: Well gentlemen, thanks for calling.
Schenk: All right, thank you. Very informative man. Nice guy.
Smith: And people who do things like this, I mean his consulting firm is not out to make money. He’s out for advocacy, and it’s so important because if it weren’t for people like him advocating for something that we all potentially face at the end of our life, which is cognitive impairment, then these people, because these people are not speaking for themselves, with the exception of a few rare individuals, the vast majority of them are voiceless, and so the work that he does is extremely important.
Schenk: That’s right. So I think that’s going to take us to the conclusion of this episode of the Nursing Home Abuse Podcast. New episodes of this podcast come out every Monday morning at approximately 6 a.m. Eastern time, Eastern time. So if you’re up late on the West Coast…
Smith: And you need something to do…
Schenk: And you need something to listen to – you can definitely check it out wherever you download your podcasts from. Or you can watch us online at our website, which is NursingHomeAbusePodcast.com, that is NursingHomeAbusePodcast.com, or you can check us out on YouTube – YouTube, the number two search engine in the world. And I think that’s about it. Yep. And with that, we’ll see you next time.
Smith: See you next time.