Dementia care and resident’s rights

Episode 127
Categories: Regulations, Resources

Dementia care and resident’s rights in Georgia nursing homes

Dementia is a broad disorder that affects not just memory, but cognition and behavior. According to some recent studies, nearly 15% of the senior community over 70 live with dementia, with nearly half of those living in nursing homes. As such, skilled nursing facilities must be able to properly care for these vulnerable residents. In this week’s episode, nursing home abuse lawyers Rob Schenk and Will Smith welcome guest Professor Rhonda Nay @RhondaMNay of La Trobe University in Melbourne, Australia to talk about caring for nursing home residents living with dementia.

Schenk: Hello out there and welcome back. My name is Rob Schenk.

Smith: And I’m Will Smith. Good day.

Schenk: Good day, I guess, to you, Will. I think that I have an understanding as to why you’re speaking that way. Why don’t you – what gives?

Smith: Well because our guest today is all the way on the other side of the world in Australia.

Schenk: Southern hemisphere, where the toilet water…

Smith: That’s not true.

Schenk: What do you mean it’s not true? It’s absolutely true – where the water is counterclockwise.

Smith: Is it like the Coriolis effect or – actually whatever it is, I don’t believe that it’s true.

Schenk: Oh, that’s like the thing where there was not a Shaquille O’Neal movie from the ‘90s where he was a genie.

Smith: Shazam!

Schenk: Yeah.

Smith: Yeah, it was Sinbad.

Schenk: It was Sinbad. Or Sinbad didn’t have the movie. Something like that where it’s the – what is the effect you’re talking about?

Smith: I was talking about the effect that does the water like that, but I don’t think it actually does that. What you’re talking about is the Berenstain or the Berenstein Bears, and I can’t remember what that’s called.

Schenk: There’s some kind of effect. We are really doing a Rob’s Mom in this moment where we’re going off into something – we’re saying words that don’t mean anything.

Smith: Yeah.

Schenk: I took whatever you said to mean the effect of misunderstanding of something but that’s held by the entire society.

Smith: Right.

Schenk: Perhaps we should edit this whole thing out.

Smith: I don’t think so.

Schenk: Okay.

Smith: I think we should keep it at this point.

Schenk: We’ll keep it at this point.

Smith: But we will find out at some point whether or not I’m right or whether or not Rob’s right. I say that the water does not go the opposite direction. That it’s the same thing.

Schenk: And I say it does go in opposite directions depending on where you are in the hemisphere.

Smith: Okay.

Schenk: But at any rate, we are going to be talking on this episode about resident rights, dementia care and the sexual rights of the residents of long-term care facilities across the world, but we’re not doing that by ourselves. As Will mentioned, we are doing that with the help of our guest today who hails from Australia. Will, why don’t you tell us a little bit more about Dr. Rhonda Nay?

Smith: So Dr. Nay is a professor emeritus at La Trobe University in Melbourne. She practiced, researched, educated and informed professional government policies in nursing and age care for over 40 years. Her passion is age and dementia care. She is a registered nurse, a member of Alzheimer’s Australia, distinguished fellow of both the Australian Association of Gerontology and the Australian College of Nurses and Midwives. She has numerous publicans and books she co-edited with Sally Garrett on care of older people, which twice won the AAG Award for best publication in the field of aging. She was a frequent invited keynote speaker, workshop presenter and consultant in nursing homes. Before semi-retirement in 2013, she was professor of interdisciplinary age care and director of the Australian Institute for Primary Care and Aging. She has developed and taught programs at all levels from in-service to PhD. She led the development of a Bachelor of Age Care, which was taught in Japan. So we are speaking with somebody who has decades of experience and we are very happy to have her on the air today.

Schenk: Rhonda, welcome to the show.

Rhonda: Thank you. It’s lovely to be on this show.

Schenk: Fantastic, and you know, we’ve been international for a while now. We actually had another Australian on this show, probably last year. Episode 72 was Kate Swaffer of the Dementia Alliance International.

Rhonda: Oh yes.

Smith: Do you know Kate?

Rhonda: Kate’s a good friend. I know Kate very well. She’s a wonderful woman.

Smith: She is. How’s she doing?

Rhonda: She’s doing really well, very busy and very all over the world, so yeah, she’s been a magnificent advocate.

Smith: Yeah, she has. She has an amazing story too. She’s truly a remarkable individual.

Schenk: Well Rhonda, we wanted to have you on the show. We saw a couple of articles that you had written on residents’ rights, on the rights of residents in nursing homes that are living with dementia, and also the sexual rights of residents in long-term care. So we wanted to kind of hit the high notes of those things. So kind of to start us of, and again, to refresh, our audience is made up mostly of family members who have a loved one in a nursing home that they’re just kind of looking for some basic information they can use to arm themselves in the protection of their loved ones and just to be more informed in general. So if we can take it from there – what is dementia and what are some of the symptoms of dementia and how are we caring for individuals with dementia in the nursing homes in long-term care settings?

What is dementia? What are the symptoms of dementia?

Rhonda: I think that it’s really important for people to understand that dementia comes from damage to the brain, and it’s really important that they understand that just like a cancer is a disease of the body, so to dementia comes from diseases of the brain. And also I think differentiating dementia from, for example, Alzheimer’s – there are over 100 causes of dementia and Alzheimer’s is a cause that is the most well-known and the most common. We also have dementia, vascular dementia, dementia from people who are younger, onset dementia. There are just – you can go on Google, there are literally over 100 conditions that can cause dementia. And dementia, how it presents, again, it varies depending on which part of the brain is affected. And so we associate it most, I guess, with memory loss, but it’s commonly an initial symptom, but there are many, many others – difficulty with language, which I’m sure Kate Swaffer has spoke about, difficulties with finding your way, getting lost, managing your emotions, managing finances. So there are many, many symptoms depending on as I say which part of the brain is actually affected.

Schenk: Right. That makes sense. So in terms of caring for individuals in nursing homes, what are some of the challenges in the general care and treatment of a resident of a nursing home that is suffering the symptoms of dementia versus an individual that is not?

How does dementia care differ from standard nursing home care?

Rhonda: I think that the two biggest challenges – one is the environment because generally the environment are not set up for people with dementia, and I can say a bit more about that, and the other is about practices, because very often the staff not sufficiently educated about working with someone with dementia. And they can trigger these so-called challenging behaviors. The challenge is the staff, not the person with dementia. So I think we can get the environment right to maximize the independence of the person with dementia and we can get the staff skillset right, a lot of the issues would go away.

Smith: Yeah.

Schenk: When you say…

Rhonda: While I say that… Sorry.

Schenk: No, I was going to say, Rhonda, and you might actually be getting to it right now and I jumped the gun on this, but when you say environment, what are some of the factors of the environment that would “trigger” an individual that has dementia?

What are some triggers of dementia symptoms?

Rhonda: Well one of the issues for people with dementia is sensitivity to sounds and lights, and so if you have a very busy nursing home and you have very, very loud staff, that can – people can’t make sense of the noise, what they’re saying. And so like all of us, if we get frustrated, then you’ll see that coming out often in anger or aggression. But it’s really about how do we organize the home so that we can diminish to have optimum stimulation rather than too much or two little.

The other is about making it easier for people to make sense of their environments, and so some of the homes, for example, make sure that they have lots of things around the person related to their own home, their own history, making sure that if you don’t want people to go out the door, for example, you can camouflage so it looks like a wall and the door you want them to go into, for example, the toilet will be colorful, or their own room can have things that attract them to it because it reminds them of their own history.

Having homely smells – so having food cooked on site and enabling people with dementia as far as possible to be involved in that. So the smells of scones cooking or something like that can be very calming.

The music. A lot of nursing homes, you can go into and they have television blaring all day long. They have a radio running on a station that staff like rather than individualizing music that they’re getting into MP3 music now where the music that that individual likes is put on there for that person, and they can then manage that rather than having a lot of loud, inappropriate sounds that don’t make sense to them.

What is an example of resident-centered dementia care?

Schenk: Right. And Rhonda, we’ve talked about this one particular example. I just think it’s an interesting example of when a nursing home gets it right in terms of dementia care, but we were speaking to a guest on a previous episode, and they had brought up the example of an individual resident – she was constantly going through other people’s rooms, wandering through other people’s rooms and going through their drawers. And then either a family member or a staff member in doing an inventory of the person’s personal history, realized the individual resident was a librarian for 30 or 40 years, so what was going on in their mind was a mission to file…

Smith: Dewey decimal…

Schenk: …the file cards of the library. So the staff, the intervention was to provide that resident with 300 or 400 index cards in a little drawer, and the resident stopped wandering and would just manipulate the cards in the drawer. That was kind of her trigger to wander was not having things to organize.

Smith: Yeah.

Rhonda: Absolutely, and I think often what we try to do is to stop the behavior, which just increases frustration rather than looking at the history of what that person used to do and then trying to replicate that as they’ve done here with the librarian. And there are loads of good examples like that where once you work out why the person’s doing what they’re doing, then an intervention is a thing. I don’t know if you’ve ever watched “House.”

Smith: Yes.

Why is it important to have a resident-centered approach to dementia care?

Rhonda: The series on TV – but I use that as an example of the way in which we should be trying to understand what the person with dementia is going through. So having the white board, having as many people to know that person as possible, and really going through – we tend to do some of the medical stuff quite well, but the social history, the psychological history, the things that matter to that person, we don’t do so well. We tend to kick and flick and say, “Yes, we’ve done a history,” rather than really getting down and saying, like a detective, “What are all the things that we can bring together here to create a care environment that is appropriate for this individual rather than for the staff?” The history, of course, of nursing homes is very much based on the hospital model and what’s good for staff. And we’re getting better at that, but we’ve got a long, long way to go before we get it right.

Smith: Yeah, it seems too often, at least here in the States, I was in a nursing home the other day that did not separate those that had Alzheimer’s or memory issues from other, and people were coming over the intercom every 10 minutes that there was constant noise, and I was actually investigating an issue of chemical restraints, which is no surprise.

Rhonda: Yep. Uh-huh.

Smith: Yeah, we’re not there yet but I think we’re certainly a lot farther than we used to be, at least in the “One Flew Over the Cuckoo’s Nest” era.

Why should restraints not be used in dementia care?

Schenk: Yeah, and I really want to piggyback on your point about using the personal history and kind of approaching it like “House.” I feel like – I don’t know how you would call it – the soft characteristics of somebody – not necessarily the symptoms of diabetes or whatever their diagnosis is from the health standpoint that you would notate and provide medication for, but those soft characteristics – what do they do? Do they respond well to swing music or are they into Motown music? Those types of things would have, to me, a lot of times a stronger impact on their overall care than, “Well what dosage of whatever drug should they be provided?” although I think, as you pointed out, it’s much easier for the staff to give the individual more drugs to make them lethargic than to figure out if it’s Motown or swing music.

Smith: Yeah.

Rhonda: Yeah, as you would know, it’s intriguing that staff will say that they’re using restraints to protect the patients, whereas in fact there is enormous amount of bad symptoms to have to restraints than non-restraints. The other thing I was going to say, talking about environment is the outside environment. I think very often, people with dementia are locked in so they can’t wander and so they don’t get enough Vitamin D. Watering the garden is a great, relaxing thing to do, and being able to possibly be in the garden. There are just so many things I think that we can do around the environment, around the way in which staff interact with them in a social environment. Are we giving them a plastic cup at dinner time or have we given them wine glass? There are just so many things – if people take away my champagne when I get dementia, I’ll scream all day.

Smith: Yeah, I’m with you on that.

Schenk: Rhonda, can you kind of talk about the concept of residents’ rights? When we say residents’ rights in a long-term care setting, what in general does that mean?

What are residents’ rights?

Rhonda: This has been a passion of mine since I think back in the ‘80s, and nursing homes then were very much – who was that someone who wrote that brilliant book about institutions? It’ll come to me – but I think that the rights of the residents are no different to your rights and my rights, and this is what we forget, that staff look at it as we’re here to look after you and you will do what I – even the language, you look at the language, compliance and orders and cases. None of that is person-centered. It’s very much “I’m the boss and you will do what I say,” whereas the resident is in there and the staff ought to provide the service to them.

And so every right a human being has in our society, they should also have when they’re in care. We’re not there as their moral guardians. We’re not there – we are there to protect them to some extent, but we’ve got to think long and hard about the dignity of risk. We all take risks. We admire people who take risks. And just because you are in a nursing home doesn’t mean to say you shouldn’t be allowed to take risks. So it’s how can I support you to take the risks you want to?

We have a guy over here who’s done some amazing work, and he’s even taken residents down to jump out of the helicopter – luckily with parachutes. But – go on?

Schenk: Oh, I was just laughing. That was my laugh. Sometimes it sounds weird but I was laughing at your anecdote.

What are some examples of residents’ rights?

Rhonda: All right. I think residents first and foremost want to have the right to be heard and have people talk about nothing about us without us. It is really important that we listen to the person with dementia and often people will say, “Well, they can’t talk. They’re post-verbal.” And I just refer them to Mr. Bean because Mr. Bean doesn’t have to say a word but he can communicate everything he wants to. And people with dementia – what we’ve got to do is become much better at reading their non-verbal language, and I can never remember, but I think something like 70 percent of our communication is nonverbal anyways, and so we make way too much of the fact that the person can’t use the language verbally rather than becoming experts in saying what is this person telling me nonverbally? And people with dementia, especially in the later stages, tend to be very, very good in telling you if they’re not happy. And so by watching their facial expressions, watching their body language, watching what interests them, then we can work at what it is they want and support that person’s right to be as fully themselves as they can be.

Smith: And I think you…

Rhonda: And the other thing…

Smith: Go ahead.

Is pain a trigger for dementia symptoms?

Rhonda: Just want to bring up the other thing that is so often neglected and so important and often a trigger is pain. I’ve even had doctors say to me, “People with dementia don’t get pain.” And if you’re in pain or you’re too hot, too cold, and you can’t alter that environment, you don’t have the words to explain it and nobody’s doing anything about it, then you’re going to get behaviors, because that’s communication.

Smith: And I really like the way you frame it as the ability to take risks, because I, having worked in this industry, I was a CNA at nursing homes for a long time, and one of the things that would always bother me is people who would come in and say things like, “Well Momma can’t have this. Momma can’t have that,” or “Momma’s not allowed to smoke.” Like what are you – this woman is 85 years old. What are you trying to do? If there’s ever a time in her life to take risks, now’s the time. Are you worried she’s not going to make it to 87? It’s absurd.

Schenk: Yeah, I think that like each individual state regulates their nursing homes in their own particular way, and the federal government, at least in the United States, does as well. And we have codified a lot of core rights that we have, that we don’t lose when we are admitted into a nursing home, no matter what you said. It’s extremely important because that’s really what it is – it’s a great Supreme Court case that has to do with speech and students and it’s the same concept. And the great quote from that case is you don’t shed your constitutional rights at the schoolhouse gate. You don’t shed your rights as a human being when you’re admitted into a nursing home.

Smith: No, let them party. Let them smoke. Let them drink. And I think we’re about to get into this one too – let them have sex. These are human…

Rhonda: Absolutely.

Smith: These are human beings who have, if anything, earned everything that they have access to. So let them be human.

Schenk: Yeah. And Rhonda – it was a good segue, Will, excellent segue – can you kind of talk to us about that? How do residents rights intersect with consenting adults that just happen to be nursing home residents have to engage in sexual activity?

Are sexual rights included in nursing home residents’ rights?

Rhonda: I believe that residents – I often ask large groups of people whether they seek their children’s consent before they have sex and they all laugh. And yet so many families think they have the right to tell their parents or to tell staff, “Oh no, Mum can’t do this.” And if they come upon something happening, then they will very, very often blame the man whereas in fact it was often the woman who said, “Come on, let’s go.” So I think that as long as both those people are indicating that they’re happy with what they’re doing, then they should be supported and the families should – I think you’ve got to start right at the point of admission and families need to be counseled and to understand that in this place, we support the residents’ rights, and that includes sexual rights. We talk about whether they have bowel problems and whether they’re incontinent, etc., but we seem to draw the line at talking about sex and death. And they’re very important. There’s been a tremendous amount of research done on how good sex is for you. So if you’re not having it, get out there and do it.

Smith: Right.

Rhonda: It’s good for pain. It’s good for depression. It’s a great exercise. It’s good for self-esteem. And if ever there was a time where we need – and also touch is so important. An awful lot of people don’t get any of that personal touch. They only get the instrumental touch. So I think that sexual rights are right up there for me and that we’ve got to support them. And the dividing line between when two people are enjoying each other versus one person is attacking the other is very, very easy to see.

Smith: Yeah, I agree.

Rhonda: It’s not a grey history.

Smith: There was actually recently article where this young girl asked this resident what she wanted most and she just said, “Hugs.” And she went around hugging the different residents, which hugging and contact releases oxytocin, which is a very important chemical in our brains. Even if it’s non-sexual, just human contact, like you’re saying, these are not lab rats that you just keep…

Schenk: Social beings.

Smith: Yeah, these are human social beings.

Schenk: Yeah, and I think it’s interesting that sexual activity, human contact, emotional support from other people in your community is important, yet in any particular care plan, any particular care plan meeting, that concept probably comes up less than one percent of the time.

Smith: Well it’s like what she said is that this needs to be something that’s dealt with on the front end when you bring your mom here. They need to say, “Listen, in conjunction with the healthcare staff, we’ll come up with a care plan, but your mother or your father is, assuming they have their cognitive consent ability, they have the ability and the rights to make their own decision.”

Schenk: Birds and bees.

Smith: So you’re not going to come in here and say, “We don’t want Momma seeing that guy anymore.” All right.

Rhonda: Yeah, but I also separate married people – it’s not just new relationships. I am regularly contacted by people who say they split up Mom and Dad, and that’s a problem too.

Schenk: Yeah.

Smith: Yeah, I mean there was – go ahead.

Rhonda: When we developed a sexual rights policy in Victoria and it was checked out by the legal folks, etc., but I think what it did was also to provide a vehicle for that conversation up front to say, “This is what drives our facility.” And I think that the notion of consent in that sense is extremely important when you’re talking about dementia, but I would argue that if you have two people who – well even if it’s not sex – someone wants to take a risk and the family is saying, “No, they can’t,” and if that family member has power of attorney, I still think the staff should be prepared to take that further – if they don’t think it’s in the residents’ rights – to the tribunal or the right’s council or whatever the state has in order to maximize the rights of the resident.

Smith: Well unfortunately it’s way easier to kowtow to the family than it is to the resident because the family is more vocal.

Schenk: Or the concept of the rights of that resident.

Smith: Yeah, or the concept of the rights of that resident, yeah. Yeah, exactly.

Schenk: Rhonda, in the last minute or so that we have, can you tell us a little bit about how you came into this arena? Like what is it that made you come into this area?

Rhonda: I first went into it because hospitals wouldn’t employ mothers with babies and nursing homes did.

Smith: What?

Schenk: Wow.

Smith: What was the reasoning behind that?

Schenk: A long time ago, I guess.

Rhonda: Well they said they wouldn’t give shifts that would accommodate if you had to work a shift at the hospital. But I think what struck me was the absolute lack of rights and these days, we’d call it downright abuse. And so I went on a lifelong mission to try and do something about that, and one of the things I probably haven’t mentioned explicitly but I think it’s absolutely in the forefront is that is connections. And even right up to the very last stages of dementia, you can connect with that person. They can feel the empathy. They look in your eyes and they know if you are seeing them as a fully human being or you’re seeing them as a job to be done. And so I suppose the big thing in a million different ways is getting people to see the person rather than the disease and to interact with that person. And it doesn’t take anymore time. It’s about how you do something. It’s not another task at the end of the day. It doesn’t matter what you’re doing. It’s about that human contact and expressing to that person you are as fully human as I am and I respect you.

Schenk: Very well said. Very well said. Well Rhonda, thank you so much for sharing your knowledge, sharing your history with us, and educating our audience. I know that they’re going to greatly appreciate it and we really appreciate it very much. Thank you so much.

Rhonda: Thank you. It’s been fun.

Schenk: A lot of territory that we don’t usually handle on this episode, the sexual activity. I think we touched on that maybe a few times, well outside of like assault. We’re talking about consensual sexual relations.

Smith: Yeah, of course everything – consent is built in there. But one of the things that used to make me so angry is they would – a doctor’s job I guess is, “Hey listen, it is the healthiest for this person because they’re diabetic to eat these foods.” And the nursing staff, understandably so, and the family would say, “Well this is the rule now. Mom can’t have McDonald’s, even though she loves it. She can’t eat cake even though she loves it.” And she would ask for stuff like that, or the resident would ask for stuff – they would go, “No, you can’t have that.” Like what do you mean you can’t have that?

Schenk: Yeah.

Smith: Because I’m looking at this and I don’t want to get too angry here, but I’m looking at this nurse who’s clearly not in the best shape of his or her life, and thinking, “You clearly make some bad decisions when you leave work and you’re telling this resident who, unless you’re Methuselah, you don’t have a couple of years left here on this earth…”

Schenk: And they’ve made it. He’s yet to see whether or not you’ve made it with your dietary decisions.

Smith: Yeah, yeah.

Schenk: Yeah.

Smith: So let them smoke. Let them drink. Let them eat. Let them have sex, because at the end of the day, not only are we all going to pass away into the great oblivion and beyond, but these people are closer to it than we are.

Schenk: Yeah. And I thought it was interesting what she said about how like how many of us ask our children for permission to have sex?

Smith: Oh, absolutely.

Schenk: And speaking of that – speaking of parents, Sunday is National Parents Day.

Smith: National Parents Day.

Schenk: July 28th. So call your parents if they’re still around. If not, call somebody else’s parents. Thank them.

Smith: We only have two parents between us.

Schenk: Between us, we have two parents left.

Smith: Yeah.

Schenk: Well don’t speak so soon because this episode months ahead of time. Just kidding, Moms. Just kidding, Moms.

Smith: Just kidding, Moms.

Schenk: So another housekeeping matter, I think I mentioned this at the top of the previous episode, but you may or may not have noticed that we have gone to an every other week schedule for the Nursing Home Abuse Podcast. So rather than every Monday morning, it will be every other Monday morning you can catch a new episode of the Nursing Home Abuse Podcast. And with that housekeeping matter out of the way, that will conclude this episode of the Nursing Home Abuse Podcast. You can catch all the episodes, past and present, on our website, which is, on YouTube or wherever you get your podcasts from.

Smith: Yeah, so iTunes, Spotify – and I would add you can catch all the episodes, past, present and future.

Schenk: What did I say?

Smith: Past and present.

Schenk: You’re saying they can get future episodes.

Smith: Yeah.

Schenk: Okay, literally – you know, I see, but not future to the date in which they’re listening to this. Like how are they going to go into the future to see the episdoes?

Smith: Well you’re constantly moving into the future.

Schenk: I see.

Smith: So it’s a…

Schenk: So Steve Miller?

Smith: Yes.

Schenk: Steve Miller. Steve Miller. And with that, we will see you next time.

Smith: See you next time.