How do I talk to someone with Dementia?

Transcript of Interview: “How Do I Talk to Someone With Dementia”

Mike Barnes:

When you have a loved one with dementia, my mom has Alzheimer’s, one of the hardest things I think is the fact that you have to learn a new way to communicate. It’s not like they can’t talk anymore, it’s just hard because they don’t remember things, and you don’t want to egg them on, say, “Hey Mom, remember this, remember that.” So it can be tough, but it can be done. It can be really challenging.

Kim Barnes:

So today, we are bringing in Carolyn Rector. She is a long-time speech therapist and works a lot with the older population, with our parents. Carolyn, thanks so much for being with us. I think let’s just start with the beginning stages of dementia where you might have somebody who maybe they kind of are recognizing that they’re not remembering. They may not want to admit that they don’t remember, so there might be anger or blame or just they don’t want to talk about it. So how do you communicate best when they are, when we know that they don’t know, or they’re remembering that? Do we acknowledge that? Do we point that out?

Carolyn Rector:

Hi, well thank you first of all for having me. The best thing to do is redirect when someone with dementia is feeling frustrated, and you can see they’re kind of trying to compensate for their memory loss. The best thing to do is either redirect or set up a routine for them. People with dementia tend to do best with really structured routines. Routine can actually substitute for memory loss for quite some time, and so that can mean putting their shirts and pants that they’re going to wear for the next day in the same place in their room every day, or making sure that they’re sitting at the same place in the dining room every meal. Just little things like that can really help compensate for memory loss.

Kim Barnes:

Does it sometimes also though keep our loved ones, maybe our siblings that haven’t seen our parent for a while, think, “Oh, mom’s doing okay because she’s still able to do those things that she’s been doing because those are more routine or sort of built into your brain rather than new problem-solving?”

Carolyn Rector:

Absolutely. Commonly, I’ve seen patients who maybe will fall at home, be in the hospital, and then maybe a skilled nursing facility for rehab. Someone who maybe hasn’t been with them or know that they have had these cognitive deficits start coming up and getting worse and worse. The deficits progress. Yes, they can be taken into a new environment, and so those cognitive deficits and memory loss can really come to the forefront because their routine is absent. Yes, absolutely.

Mike Barnes:

One of the hardest things to get away from is correcting them. When my mom would say something over and over, instead of saying, “Mom, you just said that,” or if she forgot something, “Mom, remember this,” you just have to let it go.

Carolyn Rector:

You do just have to let it go. That may sound frustrating to some, that may sound as it might be the opposite suggestion that you should actually lean into, but really, you shouldn’t correct a patient with dementia. You should really try to, like, again, redirection, like, “Well, my son, I can’t find my car, where did it go?” Well, maybe your son took it to get the oil changed, or let’s go get some ice cream and play dominoes. That sounds like a better idea. Just redirecting them away from the topic they keep bringing up. Commonly, especially patients with dementia, they may be looking for their parents. Well, obviously their parents maybe passed away 30 years ago, but if you remind them that their parents are gone, they’re actually gonna relive that grief in the moment, and so that can be really detrimental to them.

Kim Barnes:

That I think is such a hard thing, especially when you’re saying something that you know is not true, and having to sort of take the understanding for ourselves that it feels weird to be knowingly telling your parent something that is not true, but knowing that that is going to make things easier for them at the same time.

Carolyn Rector:

Yes, we refer to that in the therapeutic world as therapeutic fibbing. At least I coined that term. You don’t want to lie, obviously, that’s never a good practice, but sometimes again, it’s not lying, it’s redirection. If someone is searching for their puppy that maybe has been gone 50 years ago, kind of like, “Let’s go look for the puppy later, but let’s play a game of cards. We haven’t played that game for quite some time, let’s play.” Just redirecting them, and they’ll forget about that moment, that instance that is frustrating them, and go into something that really becomes more of a positive experience instead.

Mike Barnes:

Therapeutic fibbing has been very valuable with us dealing with my mom. The other thing though that has been easy to do or easier to do than I thought it would be is to let her control the conversation. As her Alzheimer’s has gotten worse and worse, I’ll visit her and I’ll say, “Mom, your granddaughter Taylor has moved to New York City,” and she’ll say a sentence and then all of a sudden she starts talking about when she was little and her older sister and her younger brother and about her mom and her dad, and that’s basically all that she really remembers now. But it lets her control the conversation. I just have to kind of sit back and let her finish whatever her thought is and then say something else.

Carolyn Rector:

That’s a great strategy. The area of our brain that controls long-term memory has been shown by research to stay intact longer than short-term memory for patients with dementia. Something you can do though that I find is really beneficial for my patients is that when I make them a memory book. I had a patient way back when, she used to be a nurse, her family had a yacht, they lived in California, so her family brought in all of these photos and then we put them in a collection in a book, and she was able to relive these stories and these memories, and she would just talk and just language would just flow because she was reliving all these wonderful memories with her kids and then her grandkids. So creating a memory book is a really useful tool for family members and caregivers to really stimulate that language and create positive interactions.

Kim Barnes:

I know that Mike’s dad uses that as a diversion technique as well because he’ll show pictures and that’ll start a different conversation and that kind of thing. What about when the parent or the person with dementia really can’t carry on a conversation very well? You ask them questions, not necessarily about something that just happened, but even ringing up, “So tell me about when you were in grade school or when you were in high school or something a long time ago.” What do you do if they just really just give you a one-word answer and then it’s really hard to, you know, you feel like you want to have that good conversation, but it’s sometimes hard to have that.

Carolyn Rector:

Great question. You have to kind of break down language. As people with dementia age, their brains change. You kind of think of them as when we were younger, 18-month-old, two-year-old children. They’re speaking in one to two-word sentences. Maybe give them a choice. For instance, instead of saying, “What would you like for lunch?” I would say, “Would you like a cheeseburger or would you like a grilled cheese sandwich?” Giving them that power still to make the decision because people with dementia, they do feel that loss of empowerment. So much of their choices, everyday life choices, have been taken away from them by this awful, awful disease. Just giving them any kind of power, you know, when they’re getting dressed in the morning, “Do you want to wear your blue shirt or your green shirt?” Just simple choices can really give them a lot of freedom within their environment.

Mike Barnes:

It’s been very interesting to me to see my mom. Besides the fact that she forgets names and faces, she forgets words, and we have to not get upset about that and just kind of help her with that when she doesn’t remember a word.

Carolyn Rector:

Exactly. Just remembering to be patient, answering yes-no questions, using multi-modes of communication. When she’s having trouble with words, again, give her real objects. “Do you want a banana or an apple?” Show her the actual objects, or even photos of objects can be really helpful. When you give a direction, don’t just say, “Put your shirt on.” Actually hold up the shirt and physically give them the shirt, give gestures along with your words. Multi-modes of communication can really help patients with dementia not only understand your language but be able to communicate expressively more effectively as well.

Kim Barnes:

I think one thing that’s been challenging for me is that I totally can appreciate the fact that it’s sort of like being with a toddler and thinking of the ways when my kids were little, of how you teach them and they learn. But I guess the biggest difference is that with your child, they’re going to learn what the shirt means, and they won’t need you to do those promptings anymore. Yet the challenge, I think, and maybe it’s just sort of emotional too as the adult child, watching your parent, referring back to some in some ways treating them like a toddler but knowing that they can’t necessarily learn what we’re trying to teach them. Because I think sometimes, a lot of times, what we find is that it’s natural for us to want to help them, like, “Well, here I can teach them what this is again,” and knowing that that may not really be possible with somebody with dementia.

Carolyn Rector:

This is very true and that is really hard. I always tell my family members that I have worked with my patients with dementia that this progressive disease dementia is harder on you as family members than it is on the patient. The patient doesn’t realize that they’re not able. They may be thinking they’re telling you what they want, and they don’t realize that their language isn’t quite intact anymore. So it really is harder on the family members than the patients with dementia, absolutely. So just continuing to stay patient and provide, like I said, multiple modes of communication, just trying your different strategies. A strategy that maybe worked last week might not work this week because of the progression of the disease. So staying flexible with your family member and just offering different strategies every time you interact.

Kim Barnes:

Do you find that when somebody is sort of at the beginning stages of dementia, I mean, I guess one of the things is it would be so interesting to know what they know because, and I guess it’s hard for them to articulate that, but do we have an idea of how much they might or might not remember even kind of at the beginning of the stages, which probably brings out that frustration?

Carolyn Rector:

Absolutely. When I am evaluating a patient initially, I meet them for the first time. One of the first things I do, I not only do standardized assessments, but I also call the family members and I chat with them. “Tell me about where they were born. Tell me about where they grew up, their brothers and sisters, what they did for a living, what were some of their hobbies?” Just kind of get to know them as a person. Bringing in that information into a session, I’m not going to teach someone to do woodworking if they’ve never done woodworking before. But maybe I have a gentleman whose hobby was building birdhouses, so we build a birdhouse, and from that activity, we can get so much language out, so much stimulation. So really taking the time and doing a deep dive into, you know, who is this person, who was this person prior to the onset of their dementia. And then as family members, thinking about this, you know, like, “Dad really loved that card game. We haven’t played that in a long time, but I wonder if he still remembers it.” I’ll tell you, dominoes is one thing. Once you learn how to play dominoes, people can play dominoes. It’s amazing. Yeah, don’t underestimate some of those skills that maybe they developed as kids that they still have and still love to do.

Mike Barnes:

I like to say sometimes when my mom hits the cheese instead of finding a hole, she hits the cheese because she’s able to remember something. Sometimes it surprises me. I walked out with her when I visited her a couple of weeks ago, and as I walked out, she said, “You know, if you have to be in a place like this, this is a good place to be.” I was like, where did that come from? So sometimes, besides having the patience, you can’t really show surprise like, “Wow, I’m glad you remember something,” right? You have to show them grace.

Carolyn Rector:

Yeah, and just roll with it. And there are those times of clarity, those moments where it’s like, “Okay, I know that I fell and I broke my hip and that I’m here, but this is a nice place, and I’m happy.” That’s wonderful she communicated to you that she likes living here and this is okay. That had to give you some peace of mind. Yes, that she was happy and feels good about the decision.

Kim Barnes:

Any final words just as far as the ways as adult children that we can best support our family members with dementia?

Carolyn Rector:

I think just be patient, offering grace. It’s a difficult process, it’s a difficult process to watch as a loved one. I’ve had grandparents who’ve had dementia, I’ve had other loved ones have dementia. It’s hard because sometimes their personality changes as well. But just, you know, really reintroducing those memories and remembering who they are on the inside as a person, because that doesn’t change. Their inside, their heart isn’t changing just because of this disease that is affecting their brain and their ability to communicate. That doesn’t affect who they are as a person. So just really remembering who they are and why you love them and just continuing loving them regardless of the disease process.

Kim Barnes:

So if they say the sky is orange, you say it’s a beautiful shade of orange.

Carolyn Rector:

Let’s get some ice cream.

Mike Barnes:

Carolyn, thanks so much, some great tips. We really appreciate it.

Carolyn Rector::

Thank you, guys. Thanks for having me.

Mike Barnes:

I think what we learned there is what we talk about all the time is that you can’t take it personally because it’s not them talking many times, it’s the disease. And to have, you know, show that grace.

Kim Barnes:

I think for us, just knowing what are the tools and what are the ways that I can communicate that will make me feel good but also know that it’s going to benefit them as well.

Mike Barnes:

Yeah, it’s something to learn. Hey, if you have any topics you’d like us to discuss, let us know. Parenting aging parents.

*This transcript is auto-generated. Please excuse any typos or mistakes.