Breaking the silence on dementia care: Are non-pharma interventions the missing link? Join us as we unravel the silent signals of holistic care in nursing homes, unveiling transformative strategies for those battling dementia. In this week’s episode, nursing home abuse attorney Rob Schenk welcomes guest Dr. Kales to talk about pioneering non-pharma interventions, offering insights into enhancing the lives of individuals with dementia and reshaping the landscape of care in nursing homes.
Schenk:
Today on the podcast, non pharmaceutical interventions for dementia in nursing home care. Stick around.
Hey out there, everybody. Welcome back to the podcast. My name is Rob. I’ll be your host for this episode. Today, we have a tremendous guest, Dr. Helen Kales of UC Davis talking about non pharmaceutical approaches. to the care of residents and nursing homes that have dementia. It’s going to be a great conversation.
We talk about her initiative, the dice approach to dementia care. Really fantastic. Please stick around for it. It’s going to be great.
All right, let’s get into the substance of the episode. As I mentioned, we are not delving into this topic alone. We have with us an incredible guest, Dr.
Helen Kales. Dr. Kales is a fellowship trained, board certified geriatric psychiatrist. She is the chair of psychiatry and behavioral sciences at UC Davis. Dr. Kales is an expert in later life depression outcomes, risk of psychotropic medications in older adults, and dementia care improvement as the founding director of the University of Michigan’s program for positive aging.
More about Dr. Kales at UC Davis.
Now at UC Davis, she developed the DICE approach, a globally adopted non pharmacological strategy for dementia caregivers. And we are so happy to have her here to talk with us today. Dr. Kales, welcome to the show.
Dr. Kales:
Thank you, Rob, for having me.
Schenk:
So I think that one of the many complaints that I get from people that have a loved one in a nursing home, especially those that have a diagnosis of dementia of Alzheimer’s is an issue with whether or not.
The medication that’s being used to treat in quotation marks that diagnosis is the best way or the only way. Can you talk about some approaches to the long term treatment of dementia that maybe doesn’t exist? heavily involved or involved at all the use of pharmaceuticals?
Dr. Kales:
Sure. And know that question is one that the field struggles with as well.
And, I think sometimes it’s a little bit of an artifact of the organization of our long term care. It’s not long term care isn’t really set up to come up with person centered solutions at times. And so I want to back up just a second to give the audience a sense of where these behaviors come from.
So if you think about the brain and the brain that you and I are, the audience have, and then you think about what the difference would be between somebody With a normal functioning brain and somebody with a brain with dementia, a lot of that is due to damage in neurocircuits, and we think that behaviors come two ways.
One is direct damage to a neurocircuit. And the symptom of apathy is one where they’ve shown that the knockout of certain neurocircuits can directly cause apathy so apathy looks like you know the person doesn’t care they don’t want to initiate things they’re sitting In their chair and just not participating in life.
There are other behaviors. Like we, we commonly hear agitation and that’s one where there could be a thousand different causes quite honestly. And so you’re quite perceptive and the audience is quite perceptive and saying, is medication really the best treatment for something like agitation, which I always liken to, it’s like the physical symptom of shortness of breath.
We know what shortness of breath is, but it’s not a disease. It’s a symptom, right? And you could have a pulmonary embolus, or you could have a heart attack, or you could have congestive heart failure. If we presumptively treated shortness of breath with an antibiotic, we could be missing the right cause in many different cases.
And similarly, if we treat agitation with something like an antipsychotic, And let’s say agitation is coming because the person has pain. We’re missing the boat. So what we really strive to urge is to look at symptoms as coming from one of three angles in a triangle. Which is the person themselves, the caregiver, or the environment.
And to unpack that and try to look at what is the underlying cause. And then knowing that underlying cause can really lead you to the investigation of what’s going on and then how to treat it. Does that make sense?
Schenk:
It does. And thank you for stepping back because that’s, it’s gonna at least makes it easy for me to conceptualize what we’re talking about.
Let’s take the environment, for example, in terms of if this individual, the resident, is becoming agitated, we would look at the environment. For example, is there maybe a loud noise? It’s maybe they’re in the cafeteria and because of all the commotion that might be spurring it. Is that kind of what you’re referring to?
Dr. Kales:
Exactly. And we would call that the fancy term overstimulation, right? And conversely, a lot of nursing homes you go to it’s under stimulation, right? I think we’ve all been into long term care facilities and there’s somebody cranked up in a Jerry chair. They’re all by themselves. And they’re yelling for help, right?
And at one point I went into one of those facilities, saw that and what I observed as I looked at that tableau was all the nurses and staff were walking around and ignoring that person. So they’re yelling for help. They’re in the chair, they’re cranked up and I put myself in that person’s place.
And I thought if I was cranked up in this chair, something was going on with me. And I’m yelling help and nobody’s coming probably because they’re tuned out. They’re like, Oh, I, this person’s done it multiple times. But it’s the environment. Can push to create more symptoms or exacerbate those symptoms.
And that example I gave you just brings up another thing, which is that as people develop dementia, communication becomes very difficult. It’s as your communication verbally diminishes. We have to look for communication and other ways and so the person with dementia may be trying to communicate to us with that help.
Something’s wrong in the environment. Maybe they’re hot. Maybe they’re in pain. Maybe, they’re hypoglycemic. They haven’t had a snack in a while. The behavior is actually communication. So if we turn around and Say we’re going to give you a medication and sedate that, really just a friend of mine in England calls it magic.
Sleepy bye bye dust, give you something to put you to sleep. We’re really silencing that communication. And at a human level that’s sad.
Schenk:
Let me, let’s approach it this way then. So you mentioned we should have person centered care and of course that’s actually on the regulations like that should be occurring is that we look at everybody as an individual, but talk to me about then the idea of.
If an individual is admitted to a nursing home, they have a diagnosis of dementia and they have a history of agitation, they have a history of perhaps wandering or aggression, what’s the next step? What should you think the facilities should be doing on day one to address those issues in a non-pharmaceutical way, if possible?
Learn more about What is a memory care unit in a nursing home?
Dr. Kales:
Yeah, that’s a great question. So first of all, I’d say we need to get the terms precision medicine and we’re trying to get more precise with medicine and in my field now, and yet in this area and dementia care, we’re awfully unprecise, right? So Again, when somebody says agitation, I quite simply don’t know what that means.
That could be anything from somebody who is bouncing their feet up and down to actually striking somebody to being verbally aggressive. So our first step, and we call it the dice approach, the D stands for describe, right? So we want to get a full description of What is that most problematic behavior that we’re looking at and play it back for us like a scene in a movie, get as precise as possible, like the who, what, why, when, where.
And that can get down to Anna, when we go to do her activities of daily living is cursing and pushing at caregivers and striking out. And as part of that described step, we also try to say, is anyone actually in danger? When that’s happening, because if somebody is in danger, that’s going to push us one way or another.
Read about the variability in behavior.
And so in this case, let’s say, and as a 90 pound woman, no, we’re not afraid for our safety. So again, that’s not going to push me into any kind of medication intervention. So then in the next step, D I C E I is investigating. We’re going to investigate. Is this a new behavior? Is this an old behavior?
Is this something sudden, but something new we’re going to worry about? Maybe something medical is going on, maybe a delirium where she came from. Did they start a new medication? Has the dose changed? Is she on anything anticholinergic? Tylenol PM or DITRAPAN, that would be making her more confused.
So we’re going to look at all that. We’re going to look at any medical conditions that should be, could be kicking up. Is she in pain? So sometimes when people go to do ADLs, they may inadvertently pull somebody towards something and maybe, there’s something in our arm that hurts or some arthritis.
We want to look into all of that. We want to look into the caregiver interaction. So there a lot of times people inadvertently may not have the best communication with people with dementia. So there have been studies that have found that when people have a negative tone, they raise their voices or they’re like, because you always do this now, come on.
That escalated behavior, actually. And so we want to maybe look at that communication. And then that other piece, which is the environment when they’re trying to get Anna to do these ADLs, is there something going on in the environment? Like they’re trying to get her to the bath, but it’s cold in there, or they don’t have her favorite soap, or, we could be doing a sponge bath, all those kinds of things.
And so then in that sense, C step of dice, we would be thinking about, okay, what did we find out? Okay. She’s got some arthritis. Maybe we can premedicate her with some Tylenol. Her family told us that this is her favorite soap. She may be a little hypoglycemic, so maybe have a snack on hand, but you see, we were coming at it from all these non pharmacologic angles, rather than saying let’s give her Risperdal 0.5, before the bath to sedate her and then in the east step of DICE, what we’re doing is, hey, how did that work? Did any of those interventions. Give us any purchase. If so, let’s keep them going. If not, let’s keep brainstorming and so it’s really person centered and it’s also center to where the person is at that point in time, the situation
Schenk:
That’s fantastic.
There’s a lot to unpack there. I want to go back to the D and dice. And we’ll talk about DICE here in a second. I’m super interested in terms of where it came from, how it’s being implemented, but continuity of care is obviously super important between shifts between days. And what I hear you say, which is so interesting in the D of describe.
Is to be granular because we could be as you mentioned, as you pointed out to me that aggression could mean anything. So rather than jot down in the nurse note aggression, you jot down. What was it? They threw their cup across the room or they scratched at the person next to them. That’s it. I would imagine down the line, when you’re trying to understand the interventions that you need to do would be more helpful because it might not be aggression, right?
Because you mentioned it could be a host of other things other than the intention to inflict pain on somebody. So that, that really struck me. The one thing I wanted to point out that I wanted to discuss really quickly before we talk about DICE as a program was it seems to me, and I don’t know, this might be your experience.
And in your research and your studies and your experience, perhaps when someone has dementia in the nursing home, really, I’m not saying this from a malicious standpoint, but perhaps they’re only worried about a certain set of symptoms. As you mentioned. Someone with dementia might be apathetic and just sit there looking at the wall.
Learn more about Dementia care and resident’s rights
They need as many interventions as the person that is actually getting up and throwing cups across the room and things like that. Can you speak to that? Do you see?
Dr. Kales:
Absolutely. It’s funny. When I did more work in the hospital, We would observe people who were apathetic or had what we call a hypoactive delirium.
So they were confused. They were completely confused, but they were quietly confused. Nursing, and again, I think nurses are the best. I’m not being pejorative toward them at all. Those patients would tend to get overlooked because they were quiet, and they weren’t, causing any trouble.
The people that would get a lot of attention were the people who were very agitated, or they were psychotic, they were in their delirium, they were seeing or hearing things. And as you say, sometimes the people who were quietly in the chair, Were some of the sickest people, but weren’t getting that attention because the behavior looked like it fit in better.
Maybe right. Non Problematic to the people taking care of going with the flow, so to speak. And I think that’s a theme that I think I would love to see change, in our nursing homes, which is. How do we bypass the sense of going with the flow for the sake of structure and hierarchy and the way nursing homes work and really making nursing homes more person centered such that we are actually, because I think what ends up happening in the former is you think you’re imposing structure and you think you’re, very linear A to B, but by not allowing some of our frontline folks to think outside the box and say, Oh, gosh, I know that, Mr.Smith was a gardener and that may be why he’s trying to wander outside at lunchtime because he’s trying to get to our plants, you know, we don’t brainstorm solutions that instead could be not only help the person with their symptoms, but actually breed more contentment within our staff because they would feel more gosh, I know something about this person and I’m empowered to actually help in this situation rather than call somebody like me for a medication.
Schenk:
So tell me then tell me about dice from a broad standpoint. Like when was it developed? Who, when you said we like, who’s we
Dr. Kales:
Dice we began to develop the device in 2011. We are myself and Laura Gitlin, who is actually a sociologist by training. And we were coming together from the medical and the behavioral perspectives and saying, we’re seeing this.
Learn more about the team behind DICE.
And we’re seeing that people use a lot of medications. We know that at the time there were black box warnings coming out with antipsychotics. We were concerned that there was, even mortality associated with these medications and a lot of side effects. And what were we really doing? What were we, how were we really treating people?
And I was, I would give us an example, we have the movement in child psychiatry with people with autism. We’ve come so far in that movement where there’s similar difficulty with communication and my own health system, for example, has developed blood drawing stations and imaging that is autism friendly, right?
We haven’t done the same kind of thing with dementia. We search, why are these patients acting like this? We need to medicate them. They’re not doing that as much in autism because autism has this advocacy community that has really risen up and saying, this isn’t good care. And so we got together and say, how could we really Bring together more of an approach that would unpack these symptoms for people, show them the way and a simplified, mnemonic to really create learning patterns, but also behavioral change in the actual provider to say, Oh, yeah, I need to look for pain.
I need to make sure I look for delirium. I need to make sure I look for changes in medication. And so we got a group of national experts together actually across specialties to endorse this approach to flesh it out. And then we published it in a national journal in 2014. From there, it’s taken off. It’s now used nationally and internationally.
We have a training website that we’re in the process of making free for providers, caregivers, anybody. And we’ve really taken the training to the caregivers themselves because we’ve realized that Primary care providers are overburdened and it’s probably not where we’re going to get a lot of traction.
We’re going to have to work either with frontline staff or frontline caregivers. And so we now have over about 600 subscriptions nationally to our website. We’ve done live training with hundreds of people and shown that it really impacts their confidence in handling symptoms. I think a lot of this is really education.
When somebody gets diagnosed with dementia, often what happens in this country is you’re given this diagnosis and maybe somebody gets a brochure like, Oh, you could call the Alzheimer’s association. They have a number. But that’s it. And we’ve been told by caregivers. I never knew that dad was going to hallucinate.
I was never told that, I think people’s picture of dementia sometimes is a person. Sitting in a chair, quietly forgetting, and they don’t realize that a lot of these behaviors that come up are really a huge part of the process.
Learn more about Caring for nursing home residents with dementia
Schenk:
Walk me through this. This is from the provider standpoint, from the LPN, the RN, this, even the CNA, how are they taking, how are they able to physically get dice and run through it?
Over the six or seven or eight days of after admission or whatever, to get the information they need to make the person centered assessment, walk me through, is it like, like the Brayden scale where you’re given characteristics that assign a numeric value and based on the numeric value, or is it a decision tree?
What, walk me through how. Dice.
Dr. Kales:
Yeah, it’s a little more loose and qualitative than that, but it’s more of the thinking process, I would say, almost like unpacking the scientific method, like we, we basically often people will jump to a solution similar to much of life before they understand the problem, right?
Oh, I know what to do. I’m going to do this. And we always train our trainees. No description is the first task that is full description and often are LPNs, LVNs, social workers, CNAs. They’re really good at this because they know the most about the patient. They’re going to be the one to say, Oh, I know Joe was actually a reverend in his former life and he’s actually really religious or, Gemma is from Italy and she really loves talking about, the Pope and Italian cooking, so that those are gems in this approach, because knowing what somebody’s likes and dislikes and who they were in their former life. I think Rob, that’s something that’s also often missed in, in long term care is we see that person in the batter and the chair, and we think they’ve always been that way. And having that light shown and knowing, talking to the family and getting that history and that background on them can often help us in thinking about When we go down through dice and get toward the creative solutions.
What are some things that this person does, such as activity, we often use as a creative solution. Unfortunately, in most nursing homes, if you’ve gone to them, you see the activities like one size fits all. We send people to a group, And they sing a song and I don’t know about you, but my musical taste is pretty specific.
And if I was older and if somebody put me in a group and said, you are going to sing this song, you think about it, just because they’re 80 doesn’t mean they like that song. Thinking about what somebody likes to do in their past or now, and also what is possible for them to do. So that’s another piece.
We always give the example from Dr. Gitlin’s work of somebody who was a fisherman. Okay, he could no longer fish, but as an activity. Could he organize a tackle box with the hooks taken out? That might be really fun for him. Or even on a more advanced stage, could he watch a fishing video? Just using what you know about that person too.
And it doesn’t really even take that long. It’s just that extra step. And you do see this in some nursing homes where they do have, as you walk in, they have sort of memory boxes. There are things that give you a hint as to who that person was. And what we do is we encourage facilities to do that more.
Have something at the bedside where they talk about what Marie likes and doesn’t like so that the new shift coming on can know she doesn’t like being grabbed by the arm. Or surprised, she likes maybe a gentle touch on her foot, things like that.
Learn more about Wandering Patients a Problem for Nursing Homes
Schenk:
What, it’s, it sounds pretty comprehensive, Dice.
What do you think, especially with respect to the, I think it was the C, the implementation. The creation of the interventions. What do you think the biggest conflict or friction is for nursing homes to implement that part? Like where, what in your experience, like, where are you seeing trouble with the implementation?
Dr. Kales:
I think it’s buy-in from the hierarchy. I think it, places that I have worked with where the hierarchy has bought into it and has said, have you ever been to Disney? And they, my understanding is they’ve told their staff. The customers 1st, if something’s going on, you can take a minute and sit down with them and figure it out.
That would be the kind of mentality. You would want the hierarchy to have, right? If somebody, we know a lot in a lot of these places, the frontline staff are. Serving food, doing medications, answering a beeper. They may also have a phone on their belt. There’s all these kinds of things going on.
So simplifying that so that the person is available to sit down for five minutes with that person and actually run through dice in their head, could actually save a lot of time in the long run. And that’s what we’ve tried to show hierarchy when we’ve worked with facilities.
A lot of this sort of revolving door sends people to E. D. S. Because they’ve escalated. You can actually prevent it with a little time up front. And so allowing the staff who know the most about the patients to spend the time with them and decode the behavior actually can save a lot of time later.
Schenk:
So well said. That is fantastic. Dr. Kales, this has been extremely educational. I really appreciate you coming on and sharing your knowledge with us.
Dr. Kales:
Thank you. It’s been delightful to talk with you, Rob.
Schenk:
All right, everybody. I hope you enjoyed the substance of this episode. If you did, be sure to like and subscribe wherever you get your podcasts from.
We’re everywhere. I think we’re on Spotify. We’re on Google, Apple podcasts, if that even still exists. If you have suggestions for content, if you have some topics that you would like for me to cover or guests that you want to have you want me to talk to you on the show, be sure to leave us a comment, let us know willing to talk to anybody if it relates to nursing home safety and with that, folks, we will see you next time.
