The Dementia Podcast

Talking Dementia: would I lie to you?

March 10, 2021 Professor Colm Cunningham
The Dementia Podcast
Talking Dementia: would I lie to you?
Show Notes Transcript

Join Colm as he debates ‘white lies’ in dementia care with HammondCare CEO Mike Baird, Chief Operating and Risk Officer Angela Raguz and care staff Donna and Rafaella. This episode explores circumstances when a carer or family member might feel it appropriate to lie to someone with dementia. ‘Would I lie to you’ dissects the term ‘white lies’ and examines how some common care practises are fundamentally lies. Together this panel provides advice through real life examples, demonstrating how each person with dementia has a unique story and therefore, how their care, including the role of ‘white lies’, must be conducted with a deep understanding of the individual and a team approach between family, friends and care staff.


This episode is sponsored by Dementia Support Australia (DSA)

 

To find out more about truth in dementia in a resource from the Mental Health Foundation UK 'What is Truth' and the article 'Lying to people with dementia: developing ethical guidelines for care settings'

 

For a clinical perspective on lies in dementia careyou can read the article from Aging and Mental Health 'Why is dementia different? Medical students' views about deceiving people with dementia' or the research report 'Lying to patients with dementia: Attitudes versus behaviours in nurses'

 

To broaden your understanding on good or ‘white lies’ there is the article titled 'Telling a 'good or white lie': The views of people living with dementia and their carers' .

Colm Cunningham:

Hello to you and welcome to The Dementia Podcast. I'm your host, Colm Cunningham. And in this edition, we're going to be tackling the thorny subject of would I lie to you when telling the truth may be hurtful or harmful. To have this discussion, I thought it was time to have our first of many panel discussions to allow us to discuss things that are not always straightforward. We are in this discussion talking about people with advanced dementia where short and long term memory as well as communication are significantly impacted. Now white lies is where we're going to start this discussion with our experienced panel. I suspect the for this discussion that my position on the phrase white lies will not change in that I don't see it fitting with care planning and using various techniques like validation, redirection, and at times using reality orientation. That said, it all is key on a team approach and a care plan. While the term white lies may be used as a shorthand for a harsher truth. It's interesting that the dementia truth inquiry report undertaken by the UK Mental Health Foundation didn't use the term. And it was very clear allies as a blatant on truth, but they did actually have untruths as a second category, which is when probably it would fit more with the white lies terminology. But it's very relevant for us to explore this issue because 96% of care staff do admit to at times using an untruth under that category. And indeed, it's not much lower in nurses with about 87% of people reporting that they've also use that strategy. So my panel today are made up of Raf and Donna who are careworkers Angela Raguz, a nurse who has over 25 years experience of working in dementia care. And Firstly, HammondCare's chief executive, Mike Baird. Now, Mike, Billy Graham was very straightforward about this. He said a white lie is a sin pure and simple. What are your thoughts on this complex issue?

Mike Baird:

Well, I think that's quite a black and white view would be my response Colm. And I think you start as a as a premise that lying is not good. You know, you've we've all kind of experienced the impact, and sometimes the deep hurt and sometimes devastation of lying, but you then roll into particular circumstances, whether it be in public life, you there are, there's information that you have, that could infuse panic across a community. So So how do you kind of share information in a way that is considered and in everyone's interests? You know, or if we we take it applicable here in dementia care? Are there times and circumstances where understanding the individual deeply and trying to care for them in a way that reduces stress? Where call it a white lie? might make sense? And I think so I think that the response would be Billy Graham that's a bit too black and white.

Colm Cunningham:

So Angela, the dictionary would say it's to avoid a harsh truth. What is it in practice?

Angela Raguz:

In dementia kit, that I think that the terminology, we can get caught up on whether or not it's a lie or not a lie. The reality of looking after someone who is cognitively impaired, is that the harsh truth or a white lie, can equally either help the person or not. And so you have to know and understand the person that you're providing care for, to then be able to say, is it the truth that is going to help this person through a period of distress? And that can sometimes be seconds, but it can also sometimes be hours, days, weeks, months, years? And so being able to know who that person is? And what is it that that person is seeking in a particular situation? And being able to respond with compassion, to meet the needs of the person and reduce distress

Colm Cunningham:

Donna have you been confronted with this sort of situation? And what do you do?

Donna:

Yes, I have Do you know, I actually had a gentleman. Back in the day in The Meadows, who came into care, his cognitive ability was quite switched on. He was declining in areas but he still knew what was happening around him. He knew that his wife was in hospital, and he knew that he was in care. He asked every day if he could ring his wife in the hospital. So I rang the hospital. I put him on the phone, she had a phone next to her bed and he would talk to her for a couple of minutes, and it actually settled him, and he was very grateful for that. His son came in and she had passed away. He took his dad up to his room and told him that his wife had passed away. For days after that, he came out and wanted to ring his wife. We are absolutely broke my heart to have to say to him, I'm sorry, but your wife had passed away. Our That's right. And he lived that grief every single day. Before before we actually got to that point, we were making up excuses why he couldn't ring. But we got to it because and that was distressing him even more, that he couldn't speak to her more than saying, you know, your wife had passed away. So we actually got together and we decided, Okay, we got a grief counselor in. And she actually said to us, you have to tell him every day, he asks, you have to tell him that she's passed away. And eventually he will remember. And that's exactly what we did. And in the end, he actually used to thank us. He would go up to his room for a couple of minutes, he would have a cry, I would go up, I'd take him up a cup of tea, we'd go for a walk. And he was okay. After that. He was he accepted the fact that she had passed. But it was so hard to do that it was so hard to actually, you know, I think it was harder to say to him. I'm sorry, but you can't bring her today. And we really had no reason why, except for the fact that she wasn't there to talk to you. But we just couldn't tell him that. And then eventually we had to so that's sort of two sides of the coin.

Angela Raguz:

Yeah. And that's that's the difference between knowing the person and and being completely the time that a person dies. Yeah, a person with dementia has exactly the same right as your right. Yeah,

Colm Cunningham:

And Raf have you ever had a time where picking up and Donna's point where you've gone right, it's not productive to keep telling them the news, I agree with Angela, it's important to allow people to grieve Is there any point where the team have to come up with a different plan?

Rafaella:

Yes, we do multiple things, we actually try and redirect residents and see where the anxiousness is coming from. And we do that by looking at the environment. Sometimes it could be a noisy cottage, sometimes they just simple as needing to go to the toilet. So we try different things first. And that's getting to know the resident that's actually learning about the resident giving the time to the resident, because it's not always about lying. And I do the little white lies as well, to keep the resident calm. It's very important. It's all it's not about me, it's not a selfish thing that I walk away and say to myself, I did a good job. I didn't lie today. It's not about that. It's actually about keeping the resident calm and reassured.

Colm Cunningham:

I don't think that I'm not a subscriber to white lies, because I think that some of what you are describing is about thinking what the impact is for the individual and planning for that. Yes. So that's where I go, well, white lines, white lies, if you look at it as a definition, do you say the wrong term?

Mike Baird:

That's the wrong term?

Colm Cunningham:

Yeah. I just think that there's more about the team working together for and, not just the inconsistently. We've got to look at the team as how we're going to approach people. I mean, I think that that's so

Angela Raguz:

It won't surprise anyone in this room that my important strong belief in case management and the way that that is operated, you know, you can see both Raf and Donna nodding, because both of you worked with me in facilities sort of you many years ago, where the approach was, you as a key member of the team pulled together all of your colleagues with the information that you all shared. And you would go through that process of problem solving. And talking about what you know, talking about what works. So Colm your concept of it being about the team and it being good clinical care, being able to understand what might be the underlying need for a person and then thinking about how do we support that person to use your words Raf, the right of eople feeling secure, and aving safety and being being ble to live freely within their nvironment? I think it's a good onversation to have to talk bout would I lie. Because I ike to call a spade a spade, so 'm not into the definitions of hether it's a lie or not a ie, you know, if it's if if I'm elling you something that is n t true, then in my view, it's a lie. But if my intention is n t to harm you, as Raf said, if m intention is to somehow find a way to connect with you wher you are right now, which is n t where you would be if your br in wasn't impaired, then that wo ld be a much easier answer. So in trial and error you do som times you say, you know, yes your daughter's coming. Yea . When do you know full? Wel , she's not on Yeah.

Mike Baird:

Yeah. It's a bit is that bit is that on? My assumption is that that's a wrestle? Yeah. So so there's a challenge that you want to be as truthful as you can you want to treat with as much respect and dignity as anyone whether they have dementia or not. So it's all in that context, is it a wrestle to that point, but understanding deeply the person, their circumstances, what the team knows and understands.

Angela Raguz:

And that's why it's so important that it's a team because it is a wrestle. Yeah. And you have to listen to all the voices in the team. You know, how many times I've had discussions with with the team about somebody's care needs and where they're at, and whether or not they're at that point where, what we could provide them in the service they are in, and whether that was beyond what we were able to, and but you'd get people, you know, no, we really want to provide this person care, because we've now got the relationship. And then you're looking at, you know, the balance between that and the care of other people, like there's so many things yet, the team and how you function as a team makes it possible.

Donna:

Look, I can tell you a story of a lady who I had for many years, who son passed away, she was the family did not want her to know. So we never told her that he had died. And, you know, her daughter in law would always come and visit her. And she was very strict in the fact that she was never to know that her son passed away. So we never told her. I walked into her room. And we cared for her for quite a number of years before she moved to high care. I walked into her room one morning, and she had ripped up every photo of him every single photo in her room, and there was multiple. And I rang her daughter in law, and I told her and I sat on the bed with her and she said I don't want to see him anymore anyway. And that was her comment to me. And I went okay, you know, you know, something's happening. And this was a few years later down the track. I rang her daughter in law said to me, do you think she knows? And I said, Yes, she does. I said, on some level, she knows, she knows that she's he's not visiting. She knows he hasn't been around. And I think you should tell her. And she did. And and was, you know, it sort of makes you wonder, you know, what her reaction would have been, if she had told us prior.

Colm Cunningham:

And Mike, you recently brought up with me the concept of home. Because that's very interesting. For us. We were very passionate about small domestic familiar environments, home like, but you realize recently about the issue of what we mean by home.

Mike Baird:

Yeah, and I mean home as a place that you're safe and secure. And you know, in life, you can have different homes. And there's different sort of families and circumstances. So being much sort of broader, you know, home isn't necessarily right where you are today. Obviously, that's our intent in terms of design and cottage to resemble as much as possible a home, that's where you're currently living, but it's also understanding, you know, those feelings and emotions and connections go much broader. So not shutting that down, I think is important.

Colm Cunningham:

But I imagine it comes up regularly, I want to go home. You're nodding your head all

Rafaella:

the time, all the time every day. And I think it comes down to something a little bit more basic sometimes that I've experienced, and it happens perhaps 98% of the time, is when a resident wants to go home, they're more concerned with Where can I stay? And they don't explain it. They all say where am I going to sleep? Do I have a bed? Once I've explained that? It's okay, you're staying this evening and they go, Oh my goodness, do I have the bed so it's, it's very stressful to them not to know where they're going to be sleeping. So I often take residents to their room, show them the board out the front of the room and say this is your bedroom. Oh my goodness. And they all say the same thing. Oh, my goodness, thank you so much. And they clutching their chest and they're so appreciative that that is their room.

Colm Cunningham:

Now we know that therapeutic doors can be used at times to provide comfort and help change behavior for somebody with dementia. But we've also seen them used in an infantile way or know the jury's out on that. And indeed, it's going to be an episode of our podcast but where have you seen therapeutic dogs used? Well,

Donna:

we've actually got a lady in London that has loved all therapy. She cuddles it, she does everything and it actually does work for her.

Angela Raguz:

So when you give that to her see this is this is kind of the subject of what we're talking about today. Is that a lie? Are you lying to her by giving her a doll and pretending it's a baby?

Rafaella:

You will Yeah. It's

Donna:

not you. But I'm not saying I'm not saying this, it's alive. I'm just saying it's a baby, it's a baby.

Rafaella:

Occasionally, you get, you get the residents. So that's our real baby. So they some of them actually aware that it's a doll, I think

Angela Raguz:

gave people who are comforted that that person is also aware that doesn't mean that they're not comforted. That's right. So it's knowing

Mike Baird:

what memory Yeah, yeah.

Angela Raguz:

Just that feeling of being able to cuddle something. We believe necessarily that it's their baby.

Donna:

Yeah, that's right, you get the same reaction with it, when they bring their dogs and stuff in. It's the same reaction. It's like, little children, oh, my God, it's like they, you know, it's exactly the same reaction. It's because it's comforting, it's, you know, they, it gives them some emotional support. And they can actually give that that, whether that be $1, or a pat on the dog's head is it's emotional.

Colm Cunningham:

Now bus stops, and other everyday items are sometimes incorporated into care homes, I have to say at times, I've seen them used probably more often in the wrong ways and have significant concerns about them. Where have you seen bus stops used appropriately other care approach?

Donna:

but I think it was a familiarity for them, it was something that they got up, they went to the bus, they went shopping, they went to work, they did something, but the bus was a big thing to them. So, you know, for us to say, look, this is the bus stop the buses coming from here, I thank you so much. And they would go and sit there. You know, they didn't sit there very long. But for them it was that that one thing in in their mind at that one particular time that they needed to do. And it actually was quite calming for them.

Angela Raguz:

For me. It's not It's not about the bus has to come. But I would prefer that if we could engage people in things that are familiar to them, like the whole process. about like, shopping. Yeah, and I know that that's easier said than done, believe me. All right.

Donna:

But you have Yeah, and a lot of them

Angela Raguz:

saying if somebody wants, you know, if somebody likes the idea of likes dogs, then why can't we get that person to see a real dog?

Donna:

Or a real cat? Yeah, well, we have we have actual examples coming in. And they do love them. They love them. It's the same as the doll therapy love we're talking about before. And they particularly when you have real animal lovers. They smother that animal like, like, you know, that lady was talking about earlier with the doll. You know, she, they just love it. They love it. But unfortunately, it's not. It should be a daily thing. And unfortunately, it's not

Mike Baird:

Back on the specific topic of potentially white lying. We're using that term. How, from a team point of view, if someone's made a decision on shift, you know that an events come up, whether it be grieving a loss one or you know, where's my children? And our response, do we is that part of handover?

Rafaella:

Is it is yeah, we can sit down and say, yeah, Bob has been very distressed today. So we've been telling him, I only, like consistency, it is it's fantastic. So then they know what to tell him. So he's not so worried, and follows through. And that's really important.

Colm Cunningham:

And you're also representing I have in front of me all the different theories about when somebody is distressed? And do you lie etc. And that one of them. Reality orientation is what when I was trained as a nurse was the golden rule, the only thing you do is reality orientation. Clearly, the stories you've shared, say, depends. It's all individual. Why would you constantly keep reminding somebody? You've also talked about what's described as validation therapy, which is how do you validate what the person's asking of you? So you're using a whole other skill sets as well, people have put terms around them are part of that day to day and part of that teamwork?

Rafaella:

Yes, that's exactly right. And we have to work that way. It's to be effective, we have to work that way and use the teamwork and all the strategies that we've learnt along the way, and to be able to hand them over in the care plan and so that it becomes effective.

Colm Cunningham:

So we're gonna pick up Mike first, you knew what the topic was going to be? What, what were the things is conjured up? Or what were the things that you came in? with a strong opinion on? About would I lie to you?

Mike Baird:

I know I the honest appraisal is when I reflected on I thought, well, no, you wouldn't. Now there's no there's there's no way like that. That just makes no sense. As I reflected right at the beginning, in terms of the hurt and damage that can cause but, you know, my thinking has been turned on its head. Because, you know, ultimately what this is about is how do we care deeply and personally for those in front of us, and if we understand their circumstances and the grief and the actions We take, and the words we use are all about him or her, and caring deeply for him or her, then, you know, to me, doesn't matter what terms you put on it. You know, it's really about that outcome, caring, deeply and wonderfully and personally for someone means at times, there are going to be words and actions that we will take, that don't necessarily follow Billy Graham's rulebook. But they follow their rulebook and what the collective team is that right thing for them at this time in this moment.

Colm Cunningham:

And Raf, you started by saying I'm chilled out with the term white lies I'm talking, you've talked a lot about what you actually get on with doing and I've sort of said, you've demonstrated a number of the ways that voice for people but what what, when you were when we asked you to come and join us where you think it was important message to get across?

Rafaella:

I know, it sounds ridiculous to everyone else, listening in that we're lying to these people, but it's done for a reason. And we're not being nasty, we're not being harmful to these people, we're just altering the truth slightly. So these people are calm and relaxed and safe, and always, always bring back to the safety issue it to me, it's a fundamental right of every human to feel safe. And that's how I feel about that. And our mission in action says we do to do these things. And I really believe that

Colm Cunningham:

Donna, what's your thought?

Donna:

Well, exactly right, exactly the same, you know, I think for every resident that has any type of anxiety, or is has any longing to do go home, find their family, do whatever they want to do, then, you know, somewhere along the line, we have to help them do that. And if that takes a lie, then that takes a lie. And you know, to get them to calm down to get to get them to have some some enjoyment out of that day, without feeling threatened without feeling stressed without feeling agitated or anxious, then that's what it takes,

Colm Cunningham:

but actually listening to you listen to your stories, all of the things that we might say at the dementia center, lots of your stories have actually, shown validation, redirection, orientation, all of those things that are important. So you're using those skills every day, I might use certain labels to describe and I might still say, You're not lying, because actually you you are using years of experience and skill. And some of what you do some some of which I go, how did you even pick up on that, but you're paying attention to so much and understanding the individual. So while I probably stay in my camp, that you're not lying, you're actually using a lot of skills she next I want to thank you all for being part of this conversation. It's been fantastic. And I know that our colleagues not only in HammondCare, but people who listen to our podcast, will really appreciate those stories and the complexity of what you do. Thank you again, to Raf, Donna, Angela and Mike for their contributions today. And while my position remains the same that white lies is not the right term. I think we're all talking about the same thing in practice. Now the resources we referred to throughout the discussion today are linked including that fantastic report from the Mental Health Foundation in the UK, which I think is a really handy start on how you think about what's happening in practice in your service, as well as the views of people with dementia and others. Finally, thanks to the dementia podcast team for their fact checking and putting all the work together as well as the great resources they've linked in this podcast and to Dementia Support Australia as our sponsors today. dementia.com.au is where you'll find a range of resources and more information on this Australian specific program. Thank you again to you for joining us and I look forward to talking to you on the next dimension podcast. Bye for now.