What is delirium? A conversation with members of SPA-LTC's Partner Working Group

"It's kind of an altered state of consciousness where they are just not themselves. Dealing with my dad, sometimes it comes across as delusions and paranoia, it's this otherness, it is not him. It's a body response or a mind's response to these things that they can't handle." - Marlene Moorman

Delirium is frightening for both the affected person and their loved ones. It can be caused by many factors and is often characterized by confusion and behavioural changes.

We spoke about delirium and dementia with Pam Holliday, Margaret Keatings and Marlene Moorman, members of SPA-LTC's Partner Working Group.

A Partner Working Group is composed of family or care partners with diverse experiences. They add value to research and the development of clinical tools to support professionals and family care partners. The Strengthening a Palliative Approach in Long-Term Care program has put together a Partner Working Group with the support of a grant from Health Canada to help align the materials created for professionals working in long-term care homes and for family members caring for persons living in long-term care homes.

Learn more about SPA-LTC resources for care partners

Learn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

Transcript

SPEAKER_00 0:00

Welcome to the Strengthening a Palliative Approach in Long-Term Care Alliance podcast, exploring challenges and best practices and palliative care approaches for individuals in long-term care.

SPEAKER_03 0:15

Today on the podcast, we're speaking with members of the Strengthening a Palliative Approach in Long-Term Care Partner Working Group. A partner working group is composed of family or care partners with diverse experiences. They add value to research and the development of clinical tools to support professionals and family care partners. The Strengthening and Palliative Approach in Long-Term Care Program has put together a partner working group through the help of a grant with Health Canada to help align the materials created for professionals working in long-term care homes and for family members caring for persons living in long-term care homes. Our guests today from the SPALA LTC Partner Working Group are Pam Holliday, Margaret Keatings, and Marlene Mormon. Welcome to the podcast. It's great to have you all here. And I'd really like to start by asking how you all came to join the partner working group. So, Marlene, I'd like to start with you.

SPEAKER_04 1:16

Through some other groups here in Saskatchewan, I knew some of the people who were involved with SPA LTC. And at the time, my mom was in long-term care, and my dad was just developing dementia, and it just seemed a natural fit. I was asked if I would join this group, and I am delighted I did. Pam, you're next.

SPEAKER_02 1:39

Well, my mom was in a nursing home for seven years in Hamilton. Before the partner working group, I was involved in an earlier research project. And when the research actually continued on into the SPA LTC project, I was asked to be part of the partner working group. I've been involved in research in this area as a family care advisor for five years.

SPEAKER_03 2:07

And Margaret, why did you join?

SPEAKER_01 2:09

My dad lived in long-term care for over eight years before he died at the age of 100. And there was a researcher there who I met with, and my dad was part of the study. She invited me to be part of her research team to provide advice. And when they were talking about any recommendations that people had to join this team, she recommended me.

SPEAKER_03 2:36

Today our topic is delirium. And I'd like to start by asking what is delirium because I think probably people have different perspectives on what they think delirium is, and it that may not be the case. So Marlene, I'm going to start with you because I believe your background is as a nurse.

SPEAKER_04 2:52

I'll start by telling a story because I was a nurse and I thought I understood all of these terms. When my mom at age 90 got very ill, um, she was in hospital and we got there, and she was a very modest lady, a pastor's wife. We walked in the room and she was counting very loudly and stretching her long, graceful legs right up to the ceiling. And we were all just standing there with our mouths hanging open, thinking, who is this? What happened to our mother? Delirium is an episodic, acute event that has really nothing to do with dementia, but it's kind of an altered state of consciousness where they are just not themselves. Later on in life, dealing with my dad, sometimes it comes across as delusions and paranoia. But even though he has dementia, it's this otherness. This is not him. It's a body response or a mind's response to these things that they can't handle.

SPEAKER_03 3:58

Do we understand why it happens? You mentioned triggers, for example.

SPEAKER_04 4:02

The ones that I have come to understand are illness. When people get ill and they're elderly, it can be just a reaction to trying to deal with the illness. And it can happen with change too. What I have found is keeping things the same, keeping things as familiar and routine as you can are really helpful in preventing that.

SPEAKER_03 4:23

Margaret, tell me a little bit about your experiences with delirium.

SPEAKER_01 4:28

First of all, to build on Marlene's description, which was really good, delirium can also be triggered by medication. Even young people can experience delirium after an anesthetic. Being in a really uncontrolled environment, lack of sleep can be a huge trigger. I had a couple of incidents with my father. The first time he broke his hip when he was in the emergency department, he'd been in the transition area for about three hours. There was a lot of noise around. He was in pain. I couldn't understand why they hadn't done the x-ray yet. By then he'd been there six or seven hours. So by then it was nighttime. Then he was moved in to another area where he was to sleep. By then he was agitated, he was confused. It was the middle of the night. He was scared. He was angry about where he was and he wanted to get out of there. So it wasn't until the next day that he had surgery and the delirium continued postoperatively. A couple of years later, he broke his other hip and went to a different hospital. And it was like night and day. They moved him immediately into a bed, immediately moved him to a quiet area in the ER where there wasn't a lot of noise, immediately did the x-ray, and immediately did the surgery. And he did not experience delirium during that period because of those preventative measures.

SPEAKER_03 6:04

And Pam, what about your experiences?

SPEAKER_02 6:07

My mom died at the age of 96 in the nursing home. I think we possibly avoided a delirium event by not sending her to the emergency room when there may have been an opportunity to do so. A really good friend of mine was admitted to ER as a result of several falls. And his wife was absolutely traumatized by this because she was not allowed to go in with him. This was a man who was very private. You know, he wasn't exposed to people undressing him, doing things for him. And there he was in EMERGE with no support, nothing familiar. And he was absolutely a different person. He was very aggressive, just fought for uh to get out of bed, to go somewhere. He would not eat, he would not accept anything, and they restrained him, which is also one of the contributing factors to delirium. When someone familiar is there, it makes a huge difference. You know, his wife was able to manage some of the behaviors, set some things up, but you know, as soon as she left, it all fell apart again.

SPEAKER_03 7:26

You mentioned this is not him or this is not her. And I find that a really interesting statement because it suggests to me that it's really, really important for the healthcare team to ask family members or caregivers, is this normal for this person?

SPEAKER_02 7:45

My mom was in the nursing home for seven years. So we had primarily my sister and I had a lot of time to interact with the staff who were very consistent. They have a chance to get to know mom as a person through us. That environment gives you a chance to develop that partnership and some trust and have the same goals for care. So I think that kind of relationship can be built. When you go into the ER, you've got a person who may not be able to tell you anything about their history, a care partner there who knows some of the history, who can be there to actually fill in the gaps and say, this is we've seen this before or we haven't seen this before, but also advocate. It's hard to differentiate delirium from dementia, I think if you don't know the person or any history.

SPEAKER_03 8:42

I'd like to talk a little bit about dementia versus delirium. You've all mentioned dementia. Marlene, I wonder if you can speak a little bit to maybe what you see as the differences between delirium and dementia and what people need to watch for.

SPEAKER_04 8:57

Well, my dad's dementia, when he was first starting to get ill with the dementia, he described it so well as I just don't know what's wrong. My brain just isn't working. But he was reasonable, and you know, you could talk to him, and even as it progressed to where he is now, he has good days and bad days, but you can see who he is still. I recognize him. Whereas when the delirium happens, it's like a whole nother person. A couple weeks ago, he had a bad spell, and I came down and he was well, I didn't recognize him at all. He was very flat. One of the things that they do to treat delirium is give some medications, and they're mostly anticyclotics. So I didn't recognize that flat affect on him. And it was days later before I realized he was on an anticyclotic and had to say, you know, can we get that stopped? During that episode, even with the flat affect, though, he was having delusions. Like one time I walked in the room and he said, Why would you come here when you can see the ship is going down? We're all going to drown. And it was so real to him.

SPEAKER_03 10:14

Margaret, what about your experiences in terms of dementia versus delirium?

SPEAKER_01 10:19

My dad was a happy person with dementia. He was still himself. He mostly forgot a lot of stuff. When he had delirium, he totally not himself. He was angry when he was never an angry man, paranoid, thinking everyone was out to get him, and therefore hostile and kind of aggressive and hitting people or trying to hit people. When the person moves away from their normal self with dementia and gets more confused and more paranoid, it is often an indicator of something like an infection. That's what families can pick up. They can pick up those changes that might not be really overt, but they're subtle and they're different. And that's not really my dad today. And as others have said, share that with the staff.

SPEAKER_03 11:14

What do you think long-term care staff can do to recognize and support someone who is experiencing delirium?

SPEAKER_02 11:22

My mom was quite content. She was nonverbal, she could not do anything for herself, very fragile, had to be moved with care. And so her regular caregivers were very protective of her and knew her well. So I was called if there was something unusual that happened, and we talked about whatever it was. So I think that that's one way that developing a communication and a relationship with the staff and spending time, I was always conscious of the effort and the nursing staff and how busy they were. And that your family member, while important is not the only one they have to care for. So I think there's a little juggling to do there. And you have to, you know when it's a real, you probably know when it's a real emergency, and you really have to step in there and just say, we, you know, we need to do something about this now.

SPEAKER_04 12:18

Marlene, what about you and your experiences? You need a family member or a support person, somebody who knows you or knows them along for the ride. And then you're there to know what's going on, you're there to know what interventions are being done, and sometimes to identify for staff who are doing the best they can, but they don't know your person.

SPEAKER_03 12:44

I'd like to ask a little bit about the partner working group because I understand that you're working on resources or support for people who are caring for others with delirium. Margaret, I wonder if you can tell me a little bit about what the partner working group is doing.

SPEAKER_01 13:00

We are great at supporting each other and listening and helping each other through challenging times that we have. One really important thing is providing input into the website, especially that component of the website that is available to families and persons with dementia. For example, Marlene, what she said now about being present and the importance of presence and the importance of advocacy, that is a guide on the website to guide uh persons who are experiencing this for the first time around the things they can do. We're supported every year to go to great conferences and we presented at these conferences, and we have provided feedback a few times to researchers around their research. One of the really important things we've all experienced is the first time the person we love moves into a home. You feel guilty, you feel like you've abandoned them, and it's very traumatic for uh family members and caregivers, especially when it's a parent or someone with dementia who don't understand what's happening. You think you're alone, but you're not. You're not the only one who's experienced that. We've had talks about mentorship and support groups to help people through that experience.

SPEAKER_03 14:30

Pam, anything you want to add to the working group?

SPEAKER_02 14:34

We have an input into some of the research, meaningful input along the way to the resources that affect ourselves and affect the caregivers that are providing care, unlike some research projects, is very applicable right here and now. You can think about it, you can talk about it, you can share it with people. It's a very meaningful way to give back.

SPEAKER_04 14:58

Marlene, you get the last word. Well, as Pam was talking, it just made me think about what I have learned about strengthening a palliative approach. And how, as a nurse, you know, palliative, okay, we're talking about the last couple weeks of life, but through this group of people that we've come to hang out with online and support, we've come to realize that comfort care throughout the trajectory of life is so important. Certainly comfort care during delirium and dementia, but learning to understand more about there's never a wrong time to do your best for somebody to make them comfortable, to make their life the best it can be. And certainly someone with dementia or delirium, they need you more than ever to advocate for them to make their life the best it can be in that moment. That's what makes this job so satisfying.

SPEAKER_03 15:53

Absolutely. Thank you to all three of you for speaking with me today. This has been a great conversation.

SPEAKER_00 16:02

You've been listening to the strengthening a palliative approach in long term care podcast. For more information about our project, visit spawnltc.ca