Full Show Notes
Additional Resources Mentioned
Takeaways
Tip 1: Be Thoughtful About What’s On TV
The answer isn’t to take TV away completely. We need to be thoughtful about what we put on the TV and pay close attention to how our loved ones respond.
Tip 2: Target Something That Creates Curiosity Without Agitation
The goal is to find programming that engages without overstimulating or causing your loved one to fall asleep (because daytime sleeping can lead to nighttime wakefulness).
Tip 3: Leverage Simulated Presence Therapy
The innovative approach of simulated presence therapy takes advantage of how people with dementia can experience confusion between what’s on screen and what’s actually happening — and uses it to benefit them.
What is simulated presence therapy? Research has shown that when someone will only take medication or follow instructions from a specific person (like a daughter or doctor), showing them a video of that person giving the instruction can work just as effectively as having the person physically present.
Tip 4: Create Engaging Alternatives On Your Own
Beyond television, there are creative ways to provide visual engagement that work better with how the dementia brain processes information.
Observe and Adjust
Managing the television experience for someone with dementia isn’t about finding one perfect solution. What works today may not work next month as the disease progresses, and that’s reasonable. The process is about observing how your loved one responds and adjusting accordingly.
The key is understanding the changing brain experiences television very differently than we do. Through being thoughtful about what’s on the screen, targeting content that engages without overwhelming, leveraging simulated presence therapy, and creating our own alternatives, we can turn TV time from a potential source of agitation into a positive opportunity for comfort and connection.
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Full Episode Transcript
Nancy Treaster
Do you and your other caregivers rely on TV to help occupy your care receiver’s time? Most of us do. In this episode, Sue and I are talking with Allison Shryer, co-founder and president of Zinnia TV, about how regular TV can actually be a problem and what you can do about it.
We’re sharing four tips.
Sue Ryan
Alison Schreier was a caregiver for her husband with dementia. She turned that experience into her career, which is focused now on helping people both with dementia and those who care for them. Welcome, Alison.
Allyson Schrier
Thank you so much. It’s really quite an honor to be here. I love you guys.
Yes, I was a caregiver for my husband with dementia. He was 47 years old when he was diagnosed with frontotemporal dementia. And I used that experience to kind of lean into a different career path altogether, which was dementia education. So I worked in long-term care where I was in care communities helping those boots on the ground people understand how to better support people who are living with dementia. And from there, I went to the University of Washington where I helped launch and then managed a program that was education again, but this time the students were primary care providers who were being taught by neurologists, neuropsychologists about how to be better equipped to detect, diagnose and support the people who they’re caring for and around the same time while I was doing these other things, I had this background thing brewing, which became ZinniaTV, which we’ll talk a little bit more about later.
Allyson Schrier
So I’m going to ask each of you a question. And Sue, I will start with you to kick off this conversation. Sue, I will start with you. What do you like to watch on TV?
Sue Ryan
Early in the morning, I like to watch the weather. So I learn what’s going on in the weather. I live in Southwest Florida and it can be a little tumultuous at times. And in the evening, I like to turn on Sports Center because I’m a huge sports fan and want to know what’s been going on. And then as I go to sleep at night, I like to have the Hallmark Channel on. And as Nancy says, I only care about the last 15 minutes of the show.
Nancy Treaster
That’s very true.
Allyson Schrier
So you’re, you’re very intentional about what you watch. You watch it at different times during the day. And what do you get, especially out of the evening when you’re watching at night, what does that do for you?
Sue Ryan
Yes. Hallmark Channel winds me down. I already know how it’s going to end. Most of the shows I’ve already seen multiple times. And it doesn’t require me to be fully present even. It’s just kind of relaxing and it’s wrapping things up and it’s got a positive end to end the day.
Allyson Schrier
I love that. And Nancy, same question to you. What do you like to watch on TV?
Nancy Treaster
I tend to be murder mystery or cop shows, things like that. Most of them, Law and Order, sometimes a Netflix or Amazon Prime show. A lot of them I’ve seen many times before. I actually even know exactly what’s gonna happen. I’m a little bit like Sue. It’s really just to wind me down, not because I wanna pay attention. As a matter of fact, sometimes I’ll be in the middle of watching one. Sometimes I’m on my iPad playing a game at the same time and I’ll realize, oh, what just happened? I haven’t been paying any attention. But I also do it at night to help wind down and sort of disconnect me from the day and put myself in a position where my brain is starting to slow down and not really focus on all the activities of the day.
Allyson Schrier
Yeah. So I’m hearing both of you have a similar experience, that TV helps you unwind. It’s all positive. And especially Nancy, when you’re watching something that’s familiar, it’s something that soothes you. So I would like to share with you an experience that is quite different from that. And by the way, my experience is very similar to yours. I use TV to kind of unwind and it soothes me and piques my curiosity.
So I had the incredible honor to be asked to facilitate a panel at the Michigan Assisted Living Association conference that took place earlier this year. The audience was mostly people who were family caregivers or professional caregivers. And the topic of the panel was low tech and no tech solutions for people who were living with dementia. The panelists were all people who were living with dementia. They all had a dementia diagnosis. And I started off by asking the same question that I asked you. What do you like to watch on TV? And all but one of the panelists said the same thing, which was, “Oh, I don’t watch TV. No, no. If I’m in a room and someone turns on the TV, I leave. Or if I walk into a room and the TV has been left on, I turn it off. yeah. Okay, so why don’t you watch TV? Oh, it’s just too much. I can’t track what they’re saying and it’s fast and I’m unable to follow the plot and there’s so many characters I can’t keep track of who’s who. I’m always asking my husband, wait, is she the one who? So it’s just, it’s better for everybody if I just don’t watch TV.”
So let’s talk about what’s going on. Why are they having this experience? So bear in mind, first of all, that all of these folks who are on the panel are what we would consider to be fairly early in their disease progression. If you were to talk to them, it would take some time before you clued into the fact that there was something unusual about them. They’re able to get themselves to Michigan. They’re able to sit on a conference panel and have conversations. And yet they already find TV to be, as they described it, chaotic. It provokes them. It makes them feel anxious.
It also brings to mind for them the fact that this is something that I used to be able to do and I can’t do it anymore. And so it makes them feel bad about themselves. So why is that? When a person is living with dementia, they are losing neurons and connections between neurons and they’re actually losing brain tissue. So the brain of a person who has died from dementia will be up to a third smaller than it would otherwise have been.
So think about the brain as a computer, data in, data out with some processing going on in between. So if I were to ask a healthy person, what would you like for lunch? Almost instantly they would say, “How about a ham sandwich?” If I were to ask the same question of a person who’s living with dementia, the data comes in, what would you like for lunch? And the processing is where things slow down because that question starts touching different neurons inside of their brain. And the brain will try to connect with a neuron, but it’s no longer there. So it tries to go to a different spot, bridges out. And so rather than give up, the brain is going to keep trying, going to different places inside the brain until it eventually comes up with the ability to do data out. “I’ll have a ham sandwich.”
Question and response sequence when you’re with a person living with dementia can take up to 20 seconds. Similarly, when a person even with early dementia is asked a question or is involved in a conversation, they can miss one in every four words that are being spoken. So you can imagine then for these folks in the Michigan panel – What they’re experiencing is data is coming in rapidly. Lots of audio is coming in and they’re missing at least one in every four words and they’re following what’s going on. Additionally, they’re getting video coming in. so audio and video are competing for bandwidth within their brain and neither of them are going to happen very effectively.
Additionally, most people living with dementia have Alzheimer’s disease, is an amnesiac form of dementia. It affects the memory. People who are living with Alzheimer’s disease have a difficult time reading a book, for instance, because by the time I get to the end of the paragraph, I can’t remember what happened in the first sentence. The same thing happens when somebody with dementia is watching a TV show. They can’t follow the plot and the characters, they can’t keep track of who’s who. So it becomes very, very difficult. It becomes anxiety provoking as described, chaos.
So I think about my husband’s experience when he was watching TV. I would show up at his long-term care community and I would find him literally parked in front of a TV because he was in a wheelchair and was unable to stand without assistance. Sometimes, in front of the TV, he would have his shoulders up around his ears and his eyes would be pinched shut. He’d be gritting his teeth. Sometimes he would be pounding on his chest and shouting out swear words. Sometimes he would just be looking around the room lost. And I’m imagining now what was going on for him. He was feeling that same kind of anxiety, chaos, the need to have the TV turned off. It’s too much but he wasn’t able to leave the room. He wasn’t able to get out of his wheelchair and turn off the TV. And he had lost verbal skills, except for swear words. So he was unable to just flag somebody down and say, excuse me, would you mind turning off the television?
Sue Ryan
Allison, this is so powerful. And it’s got to have been tremendously frustrating as well. This leads us into tip one, which is be thoughtful about what’s on TV, because they can’t be thoughtful for themselves.
Allyson Schrier
You are exactly right, Sue. So the answer isn’t that we just take TV away and we shove it in a closet and that’s it. You have dementia, you’re not allowed to watch TV anymore. As you said, we need to be thoughtful about what we put on TV. So I think about, for instance, a community that I went to where every day, every day they would watch the Golden Girls and they would watch the same episode. They’d watch one episode every single day, the same episode. Why? Well, because the people who were watching it were able to pay attention. They’d seen it so many times that there was predictability. Even though the brain is dying and losing neurons, the brain is also still growing new neurons. And so people are able to learn over time. They could pay attention. It made them laugh.
There was predictability. They knew what was coming and that felt good to them. I think about other shows that might be useful for people who are living with dementia. My husband had a lovely caregiver who would come over and watch concerts with him, recorded concerts. He loved music. We all know that music is great for the brain with dementia. And it was an added bonus to him to get to see the music being made.
Or I think about a lovely woman who’s in a caregiver support group that I facilitate, whose husband was an NFL football player. He will watch reruns of his own games over and over again, and they still bring him comfort. What we need to be mindful of is when is it not working any longer? So a lady who shared with me that she always puts gun smoke on for her mom because her mom is crazy about gun smoke. It’s all she wants to watch.
And she said, but lately it’s not working so well. Every time somebody shoots a gun, my mother jumps and she gets upset and she’s worried about the person who’s been shot. Right? And you think, well, it is gun smoke, right? There are going to be guns.
Sue Ryan
And they’re gonna smoke and they’re gonna make noise. People are gonna fall off their horse.
Allyson Schrier
Do all of those things. So maybe it’s time to consider whether or not that’s actually the show that mom should be watching. We also want to pay attention not just to how the person is responding as we watch, but also to how they feel afterwards. Are they nervous? Are they anxious or fearful? If so, then maybe we’ve been watching something that isn’t really the right thing for them to watch.
We also need to be thoughtful about how they’re watching, who are they watching with? I love the idea that if we can find just the right programming, then it’s okay for a person to sit and watch, they’re engaged, and I can go start dinner, right? Caregivers, right? Respite is caregiver gold. And if the TV gives me little bits of respite, yay. However, research has shown that television is best for a person living with dementia if it’s being watched with another person.
Nancy Treaster
Good to know. So I think what you’re telling us is, something Sue and I say all the time is we want to observe and adjust. It’s that simple. So let’s talk a little bit more in tip two about what else we can do, how we can target something while we’re observing and adjusting that creates, we wanna target something that creates a bit of curiosity, doesn’t agitate or over-stimulate them but also doesn’t lull them to sleep. So talk to us a little bit about that.
Allyson Schrier
Exactly. So we all need to remember that daytime sleeping leads to nighttime wakefulness. So that show about butterflies that you like to put on in the afternoon because it always makes mom fall asleep. Maybe that’s not really the best way to engage mom at that time. Maybe we want to try to keep her, keep her more activated and engaged as you just said.
It’s about putting on something that you know is a topic that that person would have enjoyed when they were a healthy person is a great place to start. So if somebody really liked baking shows, let’s keep watching baking shows. If somebody really liked gardening shows, let’s keep watching gardening shows or shows about animals. However, let’s pay attention to the fact that the music or the dialogue might be distracting. It’s okay to mute the TV and watch it without the sound. And that way only one sense needs to be processed. It’s also okay to maybe separately open up your phone and start playing some music that they really love. So they’re listening to beautiful music. They’re watching images that are meaningful for them. There’s lots of wonderful programming that’s available out there for free.
So PBS, of course, has wonderful nature programs, or there are subscription programs that you can watch that are specifically nature-focused. There’s something that I love, which is called Explore TV, which is available for free. And it is access to images coming from cameras that are posted all over the world, capturing things like hummingbirds in their nest. Eagles in their nest, bears catching fish. It’s live and it’s amazing. It is really pretty cool stuff. And I know that some people talk for instance about YouTube, right? That they’ll watch YouTube videos. I don’t have any problem with that. There is some cool stuff on YouTube. The thing that I caution people about is putting somebody in front of the YouTube stream and then leaving the room because you don’t know what’s going to come up next.
But my gosh, if you’re about to go for a walk and you want to watch a video of dogs with the person, because when you go for your walk, you’re going to look at how many dogs you can count, go for it. Just be selective about what you’re watching.
Sue Ryan
That’s a great suggestion. My husband was a huge baseball fan, and we got to the point where we would put the baseball games on, but we had the sound on silent. And it didn’t seem to bother him at all. He would watch the game and he would cheer and he would get engaged in it, but he didn’t need to have the sound on because the sound had gotten to where it was overstimulating for him.
This leads us to tip three, which is something I had never heard of before called simulated presence therapy. And it just sounds amazing. Allison, would you please explain to us what this is?
Allyson Schrier
I would love to. Starting with another reason why TV is not necessarily so great for people who are living with dementia. And that is that it can cause confusion between what’s on the screen and what’s actually happening. I think we’ve probably all heard stories about mom was watching the news and there was a fire and the news, and then she became upset that the fire was in the house. Right? So we can lean into that by showing people things that they might think are real and that will benefit them.
So here’s an example. In research, they have observed that for instance, mom will not take her medication unless her daughter tells her to take the medication. And so mom, the daughter visits the care community, says, mom, for crying out loud, you need to take your medicine and mom takes the medicine. The nurses try it and mom won’t do it. So what they did instead, is they did a video of the daughter saying, mom, it’s time for you to take your medication. When the nurse offers it, take the pills from her hand and take your medication. When they show that, it is, and it’s so simple, right? But they found that when they show that video to mom, that mom takes the medication. So the daughter appears to be in the room, even though she’s not in the room. She’s getting that messaging. Or another example that they shared with me, the researcher was a guy who was a fall risk. And so he’s supposed to wear a helmet, but he refuses to put the helmet on. So what they did is shot a video of his wife putting on her own helmet. says, Hank, look at me. I’m putting my helmet on. Come on. You gotta put your helmet on. Put it on now. And he shakes his head and he takes the helmet and he puts it on because she is the person who he will listen to. So I think about, um,
So how do we take advantage of this simulated presence therapy on our own? Well, for instance, if you’re visiting the doctor and your mom is a person who will only take pills if the doctor tells her to, bring your phone with you when you visit the doctor and shoot a little video of the doctor saying, Francis, it’s time for you to take your pills. Or if you’re traveling and your loved one is living in long-term care, you can shoot videos of yourself that the caregivers can show the person.
Or if you just have somebody who’s going to be coming in the house and spending some time with your loved one while you’re out shopping and they start to fret and get upset, you can leave them armed with videos, just little tiny videos of you saying, Hey, I just wanted to remind you that I love you and you’re safe. So it’s definitely something that we can use to our advantage.
Nancy Treaster
I love this whole idea of, sorry. I love this whole idea, Allison, of leveraging simulated presence therapy to, you know, help us get the job done. It’s brilliant.
All right. So let’s talk about tip four, because there are other things beyond this, because these are creative things we can do. There are other things that we can also do to just create engaging ways to either not have to deal with the TV at all or frankly to simulate things we think would be very calming for our lungs.
Allyson Schrier
Sure. So some of the things that I did that worked well. If we know that the brain has a hard time taking an audio and video at the same time, and by the way, we also know that people are more likely to process video more effectively than there are other senses, then we can use that to our advantage as well.
I love the work of Tipa Snow and one of the things that she talked about is this idea of visual, verbal, touch. If I’m going to be brushing your hair, for instance, I might start by just holding up the hairbrush, there’s the visual, or brushing my own hair. The verbal is, let’s brush hair, and then touch is when I finally do the thing myself. I found that when visiting my husband, conversations went much better if he had something to look at to inspire the conversation, to create more meaning. So for instance, I might bring a hockey glove or a hockey magazine and by looking at that together, it would give us something more meaningful to talk about and it was something that he could really connect with because he could see it.
Sue Ryan
We did that with my husband. I put together a box of different things that were of interest to him. For example, a baseball and he could feel it. So I was engaging multiple senses and we would talk about it. And while he was holding the ball and we had several other things that we had, we had something that he had used when he was at work, which was an adding machine and he was huge. He always loved his adding machine and he just loved pushing the buttons on his adding machine. So they make a lot of sense.
Nancy Treaster
I love it.
Allyson Schrier
Sue, just love that. I really do. And don’t discount the use of photos, right? To drive story and to drive connection, something that’s visual. I absolutely used, relied on my iPhone, not just to be able to look at photos, but I also discovered, I can actually use my iPhone to create little videos. And they were way better than the stuff that my husband was parked in front of the TV watching because they would be beautiful images, right? The phone did it by itself. I would just say which pictures I wanted. And it would create these lovely videos set to music, slow paced of images that were compelling for my husband.
Sue Ryan
Allison, all of these experiences you had led you to what you created, which is Zinnia TV. And we’d love to know some more about that.
Allyson Schrier
Absolutely. So when I was supporting my husband, I had not yet met the people in Michigan. I did not yet understand all of the science. What I understood is that the TV was not working. I found a paper that was called television viewing and people with dementia living in long-term care. The researchers who wrote that paper had visited people living in long-term care and shown them TV shows that would have been familiar. I love Lucy. Bob Ross doing his painting. And of all the shows that they shared, the one that seemed the most stimulating was a show called Venice, which was simply images, beautiful images of Venice set to music. And I thought, wait a minute, I’m doing it with my phone. I’m creating images like I’m creating little videos like that. So that led to this idea of – Wow, so it is possible to create programming that is better suited for people who are living with dementia than just regular TV. And so based on that, I built a team and we created Zinnia TV, which is a streaming service of content that is specifically intended to be digestible by and engaging for people who are living with dementia.
Nancy Treaster
Give us some examples. I’m dying to hear some examples. Tell me some things that are out there.
Allyson Schrier
So we have like, there are many channels, we have a nature channel and animal channel, we have interest channels, which are videos about fly fishing or baking or working in the garden or working on a farm, right? And the idea is that we wanna have videos that have some kind of connection to what I’m watching. The person who’s watching the sewing video with their mom and the mom suddenly starts speaking about what she’s seeing because it is such a powerful connection. We have videos that are specifically intended to help with daily care. So videos like let’s drink water and let’s take a shower. And this is leaning into that idea of that visual verbal touch, if we watch somebody modeling the thing that I am about to ask the person to do, it takes away some of the anxiety that might be associated with that.
Sue Ryan
That is so powerful. Yeah.
Nancy Treaster
Yeah, it just sounds awesome. I’m so sorry. I didn’t know about this when my husband had was living with dementia and when he was alive because I once I learned about it, I thought I missed it. This is awesome. I really completely didn’t understand this was available. And I think everyone should know about it. And that’s why we’re doing a podcast with you today because we think everyone should know about this.
Sue Ryan
That’s right, sometimes our podcast episodes are based on things that we learn and sometimes they’re based on things we wish we’d learned.
Nancy Treaster
Exactly, exactly. So let’s summarize. Thank you so much, Allison, for joining us today and educating us on really how the brain changes as dementia progresses and helping us think about the impact that has on the person living with dementia and their relationship to television viewing. And then giving us some ideas on how we can creatively support those changes with other ways of presenting them television or other options.
We shared four tips.
Sue Ryan
Tip one is to be thoughtful about what’s on TV. Pay attention, observe, and adjust.
Nancy Treaster
Absolutely. Tip two, target something that creates a bit of curiosity but doesn’t lull them to sleep. Let’s be careful.
Sue Ryan
Let’s not do that. Tip three is leverage simulated presence therapy.
Nancy Treaster
Exactly. Take advantage of the fact that they might actually think what’s going on on the on the screen is real. And then, and then we also talked about tip four, which is create engaging things on your own. There’s different things, particularly like some of the iPhone technology that lets you create engaging things that you can do on your own. lots of great ideas.
Now, if you have ideas on things that we can do to help people living with dementia either enjoy TV or other engaging activities, please put those on our Facebook page or our Instagram page. The links are in the show notes. As we like to make sure you understand for every podcast, there’s a matching blog. So take this podcast number that you listen to and go to our blog page and find the blog with the exact same number. It’s effectively the notes from the podcast so you can remember everything we talked about here today.
Sue Ryan
Alison, thank you so much for joining us today. Thank you for sharing your wisdom, teaching us things we didn’t know and doing so much to help our listeners.
And as we like to say, we’re all on this journey together.
Nancy Treaster
Yes, we are.
Allyson Schrier
Thank you so much.
