Therapeutic TV for Alzheimer's: What the Research Shows

What is it actually like for someone with dementia to watch TV—and can it be made more helpful? In this episode, Allyson Schrier shares how research following her experience caring for her husband with dementia led her to create Zinnia TV, a streaming service designed to calm, engage, and support people living with memory loss.

Watch Episode

Transcript

Download PDF

NANCY KEACH: From BrightFocus Foundation’s Alzheimer’s Disease Research Program, I’m Nancy Keach. Welcome to the 42nd episode of Zoom In on Dementia & Alzheimer’s. This series is generously sponsored by Biogen, Eisai, Genentech, and Lilly, and we are very grateful to these sponsors for making these free programs possible for you guys.

Today’s program is an unusual one for us. “Therapeutic TV for Alzheimer’s: What the Research Shows.” And I am delighted to introduce today’s guest, Allyson Schrier, co-founder and president of Zinnia TV. Allyson was a caregiver for her husband who had dementia, and she turned that experience into a career focused on helping both people with cognitive impairment and those who care for them. Allyson is a member of the Washington State Dementia Action Collaborative and a founding member of AgeTech Seattle. Welcome, Allyson.

ALLYSON SCHRIER: Thank you. It’s great to be here.

NANCY KEACH: Great to have you. Allyson, you are only the second person in three years we’ve had on this program, on 42 of these programs, who is not a scientist or a doctor. But we’re having you here because you created something really compelling and really practical and impactful, and you did the research needed to back it up.

So briefly, today we’re going to try to cover what Zinnia TV is, and how and why did you create it? How is it different from regular TV? What is the research behind Zinnia? What does it cost? A lot of questions about that. How to use it, and who it’s for. The health benefits and risks of this type of TV versus regular TV. And accessibility, what to watch if you don’t have cable, satellite, or streaming.

First, I’m just going to ask you, before I get into everyone else’s questions, what is Zinnia TV? And how did you come to create it?

ALLYSON SCHRIER: Thank you. Zinnia TV is a streaming service, so think about Netflix or Hulu, that is available on a monthly or an annual subscription. And the big difference is that the content has very intentionally been created to be digestible by and engaging for people who are living with dementia. And we’ll talk more about what makes it that way. So it’s a caregiving tool that caregivers will put on for a loved one with dementia. Or people with earlier stages of dementia might choose to watch on their own to derive the benefits that Zinnia affords them.

And a little bit about how Zinnia came to be is that when my husband was living with dementia, I discovered that, at some point as he was progressing, it became far more difficult for us to have any kind of meaningful conversation. And he was, by this point, living in a long-term care community, and I would stop by and visit him. And the conversations were just super transactional. I would talk about, like, oh, my god, you wouldn’t believe the price of gas, or– my kids were young when my husband was diagnosed, so, the lineup to drop off the kids today, whatever it might be. And then well, OK. See you. It was great hanging out. But what I discovered is that if we had something visual that we were looking at together and we talked about the connection that we have with that thing, conversations became a lot more engaging.

And this is very much in keeping with training that I had. My path led me to becoming a dementia educator along the way. I studied under Teepa Snow, and one of the things that she talked about was this concept of visual, verbal touch. If I’m supporting a person who’s living with dementia, I need to recognize that the ability to take things in visually lasts longer than some other things. It’s a more compelling way to connect with a person. And so therefore, if I’m going to brush a person’s hair– visual, I brush my own hair; verbal, hey, let’s brush hair; touch, then I touch your hair. So knowing this, I thought, well, gosh, if we look at something, then that might actually enhance our ability to have conversation. And it worked.

So my husband was a hockey player. I might bring in a hockey glove. I might bring in a puck. We might look at a hockey magazine. We might look at photographs. And then I discovered that on my iPhone, I was able to actually make little videos that used the content that was on my phone that were slow paced, easy for him to watch, and it would allow us to have conversations about the things that we were looking at. And it was a keen interest in trying to get more content on my phone so that I could make more of these little videos that led me to reach out to friends at Apple, which connected me with a fellow who was actually the designer of the product I was using on my iPhone, and he became my first business partner.

NANCY KEACH: Ah, OK. It’s really interesting. Colleen wrote into the chat, “I love this, because my dad had vascular dementia and most TV upset him. He only liked Animal Planet and music. So cool.” And that was a lot of the feedback that we got and part of the reason why we really wanted to have you on.

Larry from Jackson, New Hampshire, wrote in, “Is there a scientific verification of the validity of this approach for helping people who have Alzheimer’s?” And Ranga from Orlando, Florida, wrote, “Honestly speaking, what is the positive outcome so far from this research? A soul-searching question, pardon me.” Which I thought was really sweet.

So your website says that Zinnia is an evidence-based dementia care solution, and you’ve done research, I know, with University of British Columbia, Massachusetts eHealth Institute, the Brenda Strafford Foundation in Calgary, Canada, and the US Department of Veterans Affairs. So can you comment on some of this research? Because here you were. You had friends at Google. That’s cool. But you’re not a scientist. So how did you commission research to bring you to something that’s been validated?

ALLYSON SCHRIER: Sure. So I recognized really early on, who’s going to believe me? I’m just a lady who had a husband with dementia, and I found some stuff that helped him. So before we even had a product, I, at that time, was working at the University of Washington in their Memory and Brain Wellness Center, where I helped launch a program that was about education for doctors to become better equipped to detect and diagnose people living with dementia. And through that, I made connections at the University of British Columbia. When I had this concept, some of the earliest people I met with were my colleagues at the University of Washington to say, so you’re a neurologist, you’re a neuropsychologist, could you see a benefit in something like this? And it was them saying definitely that was the impetus for me to say, OK. I’ve got to try this.

So I reached out to those colleagues at UBC and talked about what we were trying to build. The first thing that we did, once we got this research project going with them, is we just made content. We didn’t have a way to get the content out into the world. We just made content. And we tested that content. So I had been testing the content. I’d go to the homes of people who were living with dementia. I’d go to long-term care communities. And it seemed like we were on to something. But through UBC, they had projects, research projects going. They conducted research, both in long-term care settings and hospital settings, at the Vancouver General Hospital, where they would show people the content that we were developing, and they would watch what happened. And this research went on for a period of two years and resulted in six publications.

And what they discovered were that the three main use cases for Zinnia were that, in these research settings, it absolutely helped create connection and engagement, not just between the caregiver and the person living with dementia, but in long-term care settings between people with dementia, that they would talk with each other about what they were watching. They found that Zinnia helped reduce stress and agitation for the person who was living with dementia, in that they would show it to a person, either to set a soothing tone or in the moment when agitation was starting to happen.

They also found that the Zinnia videos helped them establish routine– them being the caregivers– helped establish routine and help with activities of daily living. And that’s because we have videos like, let’s drink water, let’s use the toilet, which are not meant to be instructional, like, pick up the glass and bring it to your lips. It just shows people modeling the thing that we’re about to do so that the person with dementia knows that it’s safe, that it’s accomplishable, and that it’s potentially even enjoyable.

NANCY KEACH: By the way, you’re getting a lot of kudos in the chat here. This is Kirsten, “This is amazing. Thank you.” And Carlos, “We love Zinnia TV.” So people are already using this. And I think, while I’m going to keep asking a little bit about research, but just so everyone knows– and we are going to get to cost and how you access it and so on. The Zinnia website is www.ZinniaTV.com. So you can go and poke around if you want on the website. And also, they offer a free trial. So we’re going to be getting to that in a minute.

Mary from Frederick, Maryland, said, “How is this research being funded, or how was this research funded? And what key strategies, say high level, can be gleaned and applied more widely?” Actually, well, let me throw in first, Randall also wrote, “Has this technology been FDA cleared?” So I’ll let you address that with the whole research question.

ALLYSON SCHRIER: Sure. And no, Zinnia has not been FDA cleared. The research that was done at UBC was funded– we were really lucky. There was a philanthropist in Canada who really liked what we were doing, and he donated money that was then matched by a Canadian governmental entity, and that’s what funded the research at UBC. Other research, like the research in Massachusetts, was funded by a grant through the state of Massachusetts. We are currently doing research with Duke University, and that research has been funded through an NIH STTR grant.

NANCY KEACH: That’s funny. Carlos wrote, “Zinnia TV is dad approved.” And I will point out that it wouldn’t be an FDA– it’s not a drug or a device or any of those things, so it’s not the type of thing that would have to be approved by the FDA.

ALLYSON SCHRIER: And I think I didn’t answer the second half of the question, which you will need to remind me what it was.

NANCY KEACH: Sure. What key strategies can be gleaned and applied more widely from what you’ve learned doing this?

ALLYSON SCHRIER: OK. Well, I mean, a key strategy is that we need to meet people who are living with dementia where they are. Take into account what works and what doesn’t work, and focus on what works. Recognize that we, as the caregivers, are the ones who set the tone. Recognize that we, as the caregivers, do have tools at our disposal, and we need to know how to use them. I think that the whole approach of Zinnia, that it’s gentle, and that it recognizes that there are times when all of us, frankly, behave like we’re a person who’s living with dementia, and so we need to make things available to us all that help us settle and soothe.

NANCY KEACH: That’s interesting. I was going to go to the cost, but there were a lot of questions like this or comments like this. Lori wrote, “The research about content makes sense. However, there is research about having your loved one with dementia watch TV versus other forms of engagement, with a question mark. Because I work with caregivers who worry that their loved one is watching too much TV, and that is of concern to them.” And a lot of people were like, how much TV is too much?

ALLYSON SCHRIER: So first of all, I need to say, I hate television. I hardly watch television because I have better things to do with my time. And I think that the argument in general that I have against people watching TV is watching– and even for people with healthy brains, watching things that leave us feeling agitated, watching things that keep us from doing things like going for a walk, spending time with our loved ones, engaging in activities that are actually mentally stimulating, nobody should be doing that. And a person living with dementia should never, ever be parked in front of a television all day long.

Research has shown that the best way for a person with dementia to watch television is shoulder to shoulder with the person who is supporting them. It is meant to be used as a tool that starts to promote connection and conversation, that elevates the mood, that helps people feel better so that the rest of the day is more productive. Zinnia is not meant as a substitute for regular television. So what we think about with Zinnia is that the television or the tablet or whatever you’re using is simply the box or the device through which the tool is being delivered. And just like you wouldn’t sit and do puzzles all day long with a person with dementia, you wouldn’t have them fold towels and socks all day long, they shouldn’t watch Zinnia all day long. It should be used as needed to get the desired results.

NANCY KEACH: I’m going to get a lot more deep into TV, the good, the bad, the ugly, and the difference between Zinnia, but let’s get to the cost. So what’s the cost? And we’re going to offer folks who are watching this program a discount, but it’s a very affordable program. So let me let you respond.

ALLYSON SCHRIER: Yeah. So Zinnia is $69 a year, or you can do a monthly subscription, which is $9.99. And I need to say that this has been very intentional. We talk to people who are like, that’s ridiculous. I just got my Netflix bill and it was $19. And I hardly ever watch it. But my kids use it, so there you go. But I was a caregiver. I get that it is ridiculously expensive to support a family when there is dementia involved. There are so many new costs that you never would have anticipated. And so we don’t feel that Zinnia should be a burden. And that’s our goal, to have it be that Zinnia is something that’s affordable. Our play is not to sell it for thousands of dollars and get 10 people to use it. It is to sell it for a very reasonable price and have lots and lots of people use it.

NANCY KEACH: This is another reason I think this is great. And you can cancel any time if you’re going on a monthly basis, correct?

ALLYSON SCHRIER: Correct.

NANCY KEACH: And there’s other pricing for senior living and group settings. But we want to offer a code. BRIGHTFOCUS15. And if you use the code BRIGHTFOCUS15, you’ll get 15% off, which would make a year subscription $59.54, which is less than $5 a month. So I also have to say, Allyson, thank you, because I find that extraordinary.

ALLYSON SCHRIER: And could we clarify, I think that was BRIGHTFOCUS all in caps.

NANCY KEACH: Oh, yes. OK. BRIGHTFOCUS all in caps.

ALLYSON SCHRIER: And that’s only for the annual. So you’ll have a choice of monthly or annual. We can only offer discounts on the annual subscription.

NANCY KEACH: OK, great. Jane asked, “Is this service appropriate for all stages of dementia or more appropriate for mild stages?”

ALLYSON SCHRIER: That is a great question. And I’ll tell you, honestly, out of the gate, the goal was, let’s have something for people with mid- to late-stage dementia. Because there’s so little that seems to be available as the disease progresses. And certainly, it’s really helpful in those cases. I mean, I will tell you, the feedback that we get from people, like I got my wife back. Thank you. Or wow, we didn’t know mom could still talk. I mean, for people who are in later stages, it is why we keep doing this.

But we also have people who have who have MCI or early-stage dementia who use Zinnia for the same reason that caregivers use it for themselves, which is to soothe and settle. There’s a couple that we have done quite a bit of work with, and she is one of those folks who, if you had a conversation with her, you’d be surprised to find that she has a dementia diagnosis. But she watches Zinnia with her husband to establish what she loves best now so that when a time comes when he needs to make a choice about what he’d like to have her watch, she’s already vetted it. And I think that that’s kind of cool.

NANCY KEACH: Kerrie Ann wrote, “How does this work exactly? Is it an app you download on your phone or that you can find on your TV?” And Margie wrote, “I joined late. Do you use regular TV to show Zinnia?” Can you talk practically about how you show it, how you get it?

ALLYSON SCHRIER: Absolutely. So Zinnia is an app. And we have an app for iOS, for Android, for Apple TV, Amazon Fire. And so what that means is that– So if I have Roku TV, the Zinnia app can be purchased and downloaded on the Roku TV. But if I had, for instance, an LG TV, there isn’t an LG app, so that means that I would need to get– I like to be really candid about this. I’d need to get a Roku Stick or an Amazon Fire, which is $30. So when I say that Zinnia is really reasonable, you might need to spend an extra $30 to be able to get it on your TV.

It works on iPads. It works on Android tablets. You just download the app. And when you pay for the subscription, you can use it on as many devices as you want. So we have cases where mom spends half the week at one daughter’s house and half the week at the other daughter’s house, so they just share the subscription. Or we have it on our tablet so that when we go to the doctor’s office or when we’re sitting in the airport, we are able to watch Zinnia there, but we also play it on our TV at home.

NANCY KEACH: And if you signed up and you were having trouble with it, is there a help number?

ALLYSON SCHRIER: Yeah. There is. And our videos are routed through Vimeo, and so there’s tech support through Vimeo. And then I would say that some percentage of my time is just having personal conversations with people who have an issue, or we need to cancel our subscription. Mom passed away. And so we do a lot of personal interaction with people.

I for years have been a dementia educator, and I feel like Zinnia is a great tool. But one of the greatest tools that caregivers can give themselves is an education about how best to take care of themselves and the people that they support. And so we created an education series. It’s free. You don’t need to be a Zinnia subscriber. We offer them once a month. And I am really excited about the stuff that we talk about– I try to create content that is not what I see every place else. So it’s not me who’s necessarily lecturing, although the next one I am. I’m going to be doing a session in May about intimacy and sexuality. But then we’re having somebody who’s going to be talking about anosognosia. We have a neurologist who’s going to be talking about the “myth” of self-reliance. We have somebody who’s coming in to talk about how do you take care of your own brain as a caregiver, and how do you build cognitive strength for the person that you support. So anyway, I’m excited by this. And again, they’re free. They’re an hour long. We get lots of great feedback from people.

NANCY KEACH: That’s fantastic. And it’s funny, I’m sure people are like, oh, you’re doing an episode on sexuality. But we did the movie with Glen Campbell and his family when Glen had Alzheimer’s, and we had such funny interviews with his wife Kim, because she would say that they would have relations, and a couple minutes later, he would say, let’s do it. And she would say, Glen, we just did it. And we took this out of the movie, but he would say, well, there’s still more there to go. So there are things that are very common to Alzheimer’s and other dementias regarding sexuality that are good to talk about and good to share, because a lot of people are going through this and holding it back. So thank you for doing that.

ALLYSON SCHRIER: Yes.

NANCY KEACH: We have a lot of questions coming in. I’m going to ask this again, because I think this is probably common. Do you have to have Wi-Fi? Can you pre-download programs like with Amazon Prime to be able to use it on an airplane?

ALLYSON SCHRIER: And the answer is that yes, you can. So if you’re traveling with a tablet or a laptop, you could run Zinnia. And then from within Zinnia you can download videos, and then you can watch those when you don’t have access to Wi-Fi.

NANCY KEACH: So Fran is asking, do you have to be subscribed to Zinnia TV to have access to the upcoming educational webinars?

ALLYSON SCHRIER: They are free to the world. You do not need to be a Zinnia subscriber.

NANCY KEACH: Fantastic. Free to the world. And so are these Zooms, I’m very happy to say. I’m going to go back to some of my pre-loaded questions. And this is getting in the weeds, but this is what people want to know. Ellie, from Lake Elmo, Minnesota, “How close should they sit to the TV? Do you have research on that?”

ALLYSON SCHRIER: Well, I can tell you. So very early on when we were doing our testing, we were testing with a guy named Gary who had pretty advanced FTD. And what we discovered is that– his family put him in front of a TV for periods of time each day, and we watched what happened when we moved the screen closer. So he watched TV, and he was just kind of looking around the room. The TV’s right over there. It’s in the corner. It’s probably 20 feet away, 10 feet away, maybe. And he’s looking around the room. And then we showed him a Zinnia video, and we put it right up close. And wow. He was transfixed. He watched that Zinnia video all the way through. He was enthralled. And so we thought, oh, well, there we go. There’s the proof. Zinnia works better for him than regular TV. And then I said, wait a minute. What if we move the TV so that it’s also about 3 feet away. And he loved it. So it had to do with the fact that he couldn’t see what he was watching.

So I recommend– you have to try it a little. When my husband was at a point where he was no longer able to get out of bed, I would put videos for him on a thing that swiveled so he could lie and watch it, but I had to be really careful to make sure that it wasn’t so close that it was fuzzing out. So you have to find that spot. But truly, the science behind what people are able to see when they’re living with dementia, their field of vision is really diminished, both in terms of the field of vision and the distance. So you do need to bring it closer than you would expect.

NANCY KEACH: And it actually sounds like it’s good to test, to give them different options and see what’s going to engage them, because also at different stages– and by the way, you mentioned earlier that you were initially creating this for people in moderate or later stages. And it’s true. And we’ve talked about it on this program before. In the clinical trial world, there is almost nothing. Out of over 100 clinical trials, there’s almost nothing to address people’s needs if they’re in moderate to late stage. So it’s another reason why this, and more and more research, I think, in this area, in terms of how to use non-pharmacological interventions when people have agitation, or just to engage them, and to help the caregiver is really great work.

And you answered one of the questions that Ron from Michigan had asked, “How does this work when a patient has vision problems?” And you talked about that. So you can bring it really close or move it further away.

Kay is asking what to do when a loved one has trouble using the TV remote, even turning it off and on.

ALLYSON SCHRIER: Don’t. There are products that are meant to be super easy remotes for people who are living with dementia. With Zinnia, we expect that it’s the caregiver who is going to be– especially for mid to later stages, we expect that it’s going to be the caregiver who is choosing what to watch, with help. Because the way that Zinnia works is– somebody was asking whether it comes out– is it all automatic? There are channels. So there’s a nature channel. There’s an animals channel, an interest channel. We have quizzes. We have something called Today in History, where you can actually watch a little documentary of things that happened today in history, all slowed down so that they are accessible for a person with dementia. You can pick the channel and then have the thumbnails of the videos appear on the screen and then the person with dementia can pick what they want to watch.

But it can be really frustrating, as everybody knows, to have a person using a remote. We did have a guy, a former friend of my husband’s, who actually built a little interface for his dad to be able to use Zinnia on his tablet, where he would just go like this and pick videos. We have not turned that into a product, but I like the idea.

NANCY KEACH: I like the idea too. Before we go to some discussion about regular TV, Jeff from Fort Myers, Florida, wrote, “How many hours a day is good for someone with Alzheimer’s to watch television?”

ALLYSON SCHRIER: You know, it’s a great question, but it’s kind of like asking– because everybody’s different, right? So I would say for as long as they are getting something out of it. So what do they get out of it? And how do you know that they’re not getting something out of it? If they’re looking around, if they’re picking at their sweater, if they’re trying to get out of their chair, they’re probably not enjoying it anymore.

We don’t recommend, as I’ve already said, parking anybody all day. But recognize that one of the other benefits that we hear about a lot from caregivers is, oh, my gosh, my mom loves the dog videos so much that I’m able to take a shower. So Zinnia is also used by caregivers to create moments of respite. So I would never say like, well, we’ve actually done research, and it’s 1.6 hours. I don’t have an answer for that. But don’t think about it as a person with dementia. How long is it OK for anybody to sit in front of a television? And what could they otherwise be doing that they’re not doing because they’re stuck sitting in a chair?

NANCY KEACH: Jane asked, “Can we see a sample of Zinnia TV? And there is a free trial.” You can go to the website, and you can see samples of Zinnia TV. “Is Zinnia TV interactive? Can we select what to watch?” And actually, I was going to ask later about the interactivity, because you’ve already said that this is something that was designed to do together. And I think of that as interactive, that you can talk to each other and talk about what you’re seeing as a caregiver and a loved one. I also was wondering, is it interactive in the sense of are there programs that have chair exercise, again, both for the person with cognitive issues and the caregiver? Is there that kind of interactivity? But Heather is actually asking, “Can we select what we want to watch? Can we move around and select different things?”

ALLYSON SCHRIER: Yes, you select what you want to watch. Easy-peasy. And as far as interactivity, yes, we have chair exercises. We have yoga. The intention is– we don’t have a huge channel. I think if you like to do yoga, go watch Yoga with Adriene or something. But we like to have something, enough, for people to be able to do some interactivity together in that way. We also have meditations.

But we created new content last year that is quiz content. So we don’t have buttons. It’s not a touch screen. However, we created these quizzes that we’ve gotten lots of great feedback, where the question appears on the screen along with an image. So a question on the screen and an image. The question is read aloud by a voice that says, “What is the name of Tom Sawyer’s best friend?” And then three options appear. And we slowly take away the wrong choices so that what’s left is the right choice.

So when we tested these in Massachusetts, we tested these quizzes both in assisted living and in memory care. In assisted living, people hated it, frankly. They were like, this is for babies. I can’t stand this. He’s holding a fishing pole. The answer is fishing pole. In memory care, they loved it. The caregivers loved it. Because even though there might be caregivers who are less skilled at being able to engage people– I would argue that every Zinnia video could drive an activity. Let’s watch a gardening video together. Pause, and say, “Whoa, what kind of peas are those?”

But these are videos– the quizzes are very explicitly able– they promote this kind of thinking. And also, when somebody comes up with the answer, they feel so good about themselves. You can watch the dopamine hit when somebody is like, I got it right. So I’m really happy with that content.

NANCY KEACH: That is awesome. So I’m going to pivot, but I will be going back and forth, to some questions about regular TV. Clifford from Baltimore asked, “For Alzheimer’s patients with MCI or early dementia who cannot access Zinnia, what TV do you recommend? My father loved watching classic films on TCM, Turner Classic Movies, as he declined.” And then Margie, in the chat, wrote, “My husband only watches shows like Andy Griffith, Columbo, et cetera, but won’t watch educational or nature or music shows for some reason. How is Zinnia different?” You talked about that. But we got a lot of questions. Some were like, my loved one will only watch nature shows. My loved one will only watch older shows that remind them of the past. So there were different questions. And I guess I’ll just jump ahead and say, there were also a lot of questions– sorry I’m throwing this all at you at once– about violent TV, and what kinds of TV are dangerous, even using those words. So, sorry. That’s a lot.

ALLYSON SCHRIER: Nope. I’m going to launch into that. OK. So, I was a presenter at a conference at the Michigan Assisted Living Association, and the topic was low-tech and no-tech solutions for people who are living with dementia. I led the panel. There were a panel of seven people. The audience was people like all of us, people who are professional or family caregivers. The panelists all had dementia. And so I asked the question, “So what do you all like to watch on TV these days?” And all but one of them had the same answer, which was, oh, I don’t watch TV anymore. I mean, it’s happening so fast, and I can’t keep track of it. And it makes me feel bad, because I know I should be able to– healthy me was, so it just sort of exacerbates this fact that I’m declining. I can’t follow the plot. I can’t remember which character did what. It creates chaos inside of me. And so if I walk into a room and the TV is on, I turn it off. If somebody turns on the TV, I leave.

So bear in mind, these were people who were able to get themselves to Michigan to sit on a panel and have meaningful conversation. So it’s reckoned that by the time a person– before they even have a diagnosis, they may be missing one in every three words that’s being spoken because of just processing speed issues. So therefore, when TV is moving along and it’s talking at a regular pace, I can’t follow what’s happening even with early dementia. So I just want to understand that. And so this was also one of my compelling reasons for wanting to create this, is I would walk into the room where my husband was parked in a wheelchair in front of a television, watching Turner Broadcasting or something. And he might be like this. Or he might be going like this. Or he might be screaming out swear words. Why? Well, because he was having the same experience these people were having. It is chaos inside my body, but I don’t have the ability to get up and turn off the TV. I don’t have language anymore. I can’t say, “Excuse me. This is bothering me. Could somebody please turn it off?”

But yet, some of you have said, yeah, but my sweetheart loves watching Turner movies or loves watching old shows. That’s great. I’ve been in care communities where every day they play exactly the same episode of The Price is Right, and everybody loves it. They laugh at the right times. They shout out words, because they’re used to it. There’s familiarity. It feels good. It might feel really good for your loved one to still watch reruns of The Donna Reed Show. Then I think, keep watching reruns of The Donna Reed Show. That’s great.

If it becomes a problem– I was doing a lecture, and a woman said, my mom loves Gunsmoke, but lately she’s been very upset whenever there’s a gun. And I’m like, it’s Gunsmoke. There are going to be guns. So if mom gets upset when somebody shoots a gun, it’s probably time to stop watching Gunsmoke. Or maybe turn off the volume and put music on instead if it’s the visuals that she finds really stimulating.

So I think it’s on us as caregivers to pay attention. What’s working, and what’s not working? It’s OK. It doesn’t make you a bad person because you let your dad watch Pink Panther cartoons. If they make him laugh and they lighten the mood and he’s happy afterwards, great. Watch for agitation. So what we might find is that for example I find if I watch a show before I go to bed where there’s a lot of action and violence, I can’t sleep because I’m churned up inside. Well, gosh. That happens to people with dementia too. That’s a big issue with the news. It’s a big issue with watching action shows that they used to love, and now they get upset when you turn it off, but then when the show is over, they’re upset. Well, so maybe you don’t watch it. If there’s going to be upset anyway, maybe you could encourage them to watch something different.

NANCY KEACH: I think one of the main points is that obviously people are different, and they have different stages. So what they liked when they were in the earlier, mild stage may not be something they can tolerate as they progress. And I’ve seen that. My mother– I talk about this sometimes– is 96, and she used to love certain things. And she would ask me to put on older movies. And now I’m finding, even the older movies, even Some Like It Hot, she’s not really following it anymore. But she loves Wheel of Fortune. Wheel of Fortune, she’ll be shouting out the answer. So it is somewhat personal, but also experiment. Keep trying different things. And they’re going to have to change with time and different stages.

And since I’m on my family, I’m going to go to a question that came in from my cousin, Harlan in Seattle, Washington, that I find very interesting. “Does watching any kind of programming for over a certain time period dull our minds and contribute to reducing brain function, thus contributing to dementia development? And if so, what is the time period?”

ALLYSON SCHRIER: I am not a scientist or a doctor who has researched extensively the effects of TV on a healthy brain. From everything that I have read, limiting time in front of a TV has less to do with the fact that you’re watching TV and more to do with the fact that you are sitting, having a sedentary experience that is causing you to not only not be active, but also not be social. So if we look at the things that we would do to promote brain health, sitting and watching television isn’t on the list. So if you’re going to watch a little bit of TV to help you relax before bedtime or kill a little bit of time between appointments, that’s great. But nobody should be sitting and watching TV for hours and hours all day. And we all know that lots of people do it.

NANCY KEACH: And A wrote, “I would think sedentary lifestyle and constant watching TV adds to further memory loss. My father, after retiring, just stays on the recliner and watches TV for 8 to 9 hours a day. Seems like it’s adding to his cognitive decline. Is this the same for Zinnia?”

ALLYSON SCHRIER: I wouldn’t have anybody recline for 8 to 9 hours a day watching anything. I don’t think that the content is the thing that’s really the problem there. I think that it’s the sedentary– because if you put on– Zinnia, we have a bees video that goes for an hour and a half. And we had a team meeting one time, and we were like, let’s put a Zinnia video on while we’re having our meeting. And what we find out is after 20 minutes, we’re all watching the bees. So that’s not allowing us to be productive. So I don’t know if I’ve answered the question, but don’t do that.

NANCY KEACH: I think you have. And Joy did ask a really interesting question. Joy wrote, “I’m in the early stages. Do social media sites like Facebook help? I enjoy being connected with friends worldwide.”

ALLYSON SCHRIER: Be connected with friends worldwide. And if you’re doing that through a screen, make sure that you’re giving yourself lots of breaks to get up and stretch, drink water, go outside. But I think that there are a lot of reasons why I don’t like social media sites, and we all know about that. Walk into any airport, or get on a bus. How many people are just scrolling through social media stuff? So probably not the most productive way to spend lots of time. But Joy, it sounds like you are using it as it should be used, as a tool to promote connection and engagement. So yay, you.

NANCY KEACH: Yeah, and we know that social interaction is one of several interventions that actually scientifically are shown to have a difference on your brain health and your cognitive condition and decline. So that’s important.

I’m going to come back now to the news, because I was really fascinated that there were several people who wrote in about the news. Jane, from Cranberry Township, Pennsylvania, said, “My husband gets obsessed with the news. Is this harmful?” And Davey, from Starkville, Mississippi, said, “What are the effects of continuous cable news?” I can tell you from my own self, not good. Eileen from Ewing Township, New Jersey, “Is it safe to assume that news programs can cause more agitation and potential behavioral concerns for those experiencing dementia, especially as it progresses?” Do you want to comment?

ALLYSON SCHRIER: Yeah. I definitely can. And then I’ll tell you about my dream. So we know that there can be a situation for people living with dementia where they confuse fact and fiction. So countless stories that I know, of people who, mom was watching TV, and then there was a fire, and suddenly my mom– on the TV, they were showing a fire, and my mom started screaming, the house is on fire. The house is on fire. Or in my own family, when my stepdad, who had vascular dementia, on an anniversary of 9/11, was watching TV, and he went running in, and he shook my mother awake, and he said, “Kathleen, Kathleen, we need to leave. Terrible things are happening in New York.” So is that a problem? Yeah. Sure.

I also know that, for many, many people, news is a routine. That’s the way that they’ve always been an educated person, an involved person. That’s how they stay engaged with the world. News is a part of their routine. So it’s really hard to take away that routine. I don’t have an easy answer, which is like, so what do you substitute for the news?

And so now I’ll switch to my dream. I would love to have the funding and the team to be able to build a dementia-friendly news channel. And the way that I picture this is that there are anchor people who are in their blazers, sitting at a desk. Like, “Hi, Jane. How’s it going?” “It’s going great, Dan. Thanks. Boy, we’ve got some news today. Do you know that the average dog wags his tail 32 times a minute?” Or whatever it is, so that it’s presented like the news, but the news is benign. And then you switch to a weather station, where somebody says, “Thanks. Yeah. Now to the weather. Boy, oh boy. I’m going to tell you a bit about tornadoes.”, or whatever it is, so that the person gets– you’re scratching that itch of watching the news, but it’s a news show that would not cause a person to become agitated. Of course, it would need to be tested. But this is my dream, is that we can create something like that.

NANCY KEACH: I think that’s actually really interesting, and I’m sure a lot of scientists and people will trivialize some of these discussions. But with the massive amount of people who are at home with their loved one, with various stages and various types of dementia, this is really, in some ways– I mean, this is something that’s now practical to do. So I find this really fascinating.

I’m going to just read a couple from the chat here. Randy, “I find that music, including music stations, are very good for my sister. Soothes, calms, makes her happy. She remembers, sings songs.” There’s a lot of research we know about music and the brain and dementia. We were just in a research study on music and dementia, which is looking at this, which will be coming out. These are fantastic. I know the NeuroArts Blueprint is a project that Renée Fleming is involved with, where there’s a lot of work being done on how the arts and music can affect one’s brain. Do you want to say anything about that, Allyson?

ALLYSON SCHRIER: I do. I want to just let everybody know that we do have a sing-along channel on Zinnia, where we have a number of different artists who are perhaps playing guitar. They’re singing. We made sure that the words appear at the bottom of the screen, for people who like to be able to follow along. We have found that, especially in long-term care settings, sometimes the person with dementia remembers the words, but the care staff don’t. So this gives them an opportunity to follow along as well.

There is irrefutable evidence that music is healthy for the brain, not just for people who are living with dementia. But I think that probably many people in this room have had the experience of, she can’t talk, but she can still sing. She can’t walk, but she can still dance. There is just that part of those parts of the brain that are stimulated by music in powerful ways. Which is why, with Zinnia, the videos are set to music. They’re set to music. They’re set to sound effects. Because it is really hard for the brain with dementia to process dialogue that’s coming in and visuals that are coming in at the same time.

NANCY KEACH: Barbara wrote, “I have a friend who lives with MCI. She often doesn’t sit to watch her Zinnia, but enjoys having it on as she goes about her daily activities. She also appreciates that she can adjust the volume and speed that it plays. There are so many wonderful short and longer videos. Wonderful.” You have a ringer in there, Allyson.

ALLYSON SCHRIER: Your check is in the mail.

NANCY KEACH: Yeah. Thank you, Barbara. And Beverly wrote, “That’s a very good idea. My mother listens to, quote, ‘news,’ but really only the weather, and over and over again.” So your research clearly shows in what you’re putting forward. Before I get to a couple of other things, you touched on long-term care. And this product is available to long-term care settings. Peggy from Greensboro, North Carolina, wrote, “How can caregivers find out about Zinnia TV? Any marketing strategies created on Zinnia for long-term care facilities?”

ALLYSON SCHRIER: Well, that’s a great question. I mean, certainly as a feisty startup, which is what we are, we’re always looking for ways to get the word out. And how do they find out about us? I wish I could answer that succinctly. We have tried different marketing strategies. It’s something that we think about all the time. We’re always looking for opportunities.

Word of mouth is probably one of the best ways that people find out about Zinnia. We hear from family caregivers all the time who found out about it from somebody in their support group, for instance. And in long-term care, we go to conferences where we know that there will be long-term care folk there. Sometimes the best way that we get into long-term care communities is we get into one, and we prove out that it works really well in that one, and then it proliferates throughout that entity.

NANCY KEACH: This question is back to the news. Noreen, “My husband is diagnosed with MCI. Obsessed with watching cable news or live patrol cop shows.” So are most people without dementia. “His attention span for movies and other shows is poor. My theory is that the repetitive nature of the shows is not boring, due to the loss of short-term memory. Do you have any observations?” Does it have to do with that you don’t really remember that you just saw something like that a few minutes ago?

ALLYSON SCHRIER: Yeah, it could definitely be. I think that if it continues to be compelling– if whatever I thought was compelling is going to be compelling again when I see it– which is like the people I talked about who watch the same episode of The Price is Right every day. And part of that is because there is that familiarity, like, oh. I know this. I know this. And it feels really good to know something. It feels really good to anticipate something and have it actually happen. So I can see why that might be successful.

NANCY KEACH: And a similar one from Kay, “My former Navy pilot husband likes action but can’t follow a plot. Documentaries have narrators droning on, which is boring for him. Any suggestions on what programs might have action without being necessary to follow a plot? And in parentheses, football is perfect, but he knows when it’s not football season.”

ALLYSON SCHRIER: Oh. I don’t know. Have you tried watching recordings of football games? There’s a guy I know who is a former NFL player, and that’s all he watches, is football. He just loves it. And so even though it’s not football season, to be able to say, oh, my gosh. I was hearing from some people about how this particular game that took place was so amazing. I want to watch it with you, because maybe you can explain to me what’s going on. Find a way to make it compelling. I think sports are good.

Another thing. Watching recordings of bands, if your person is into music, because you’re able to watch the instruments being played. It’s active, but there’s music going on. So that’s another thing that I’ve heard from people.

I also love explore.org. Do you guys know that one?

NANCY KEACH: I don’t.

ALLYSON SCHRIER: explore.org is so cool. It’s free. And it is cameras all over the world that are watching things happen. So it’s like a camera that’s at an eagle’s nest, or a camera that’s watching bears in Alaska, or a camera that’s watching– a lot of it is nature stuff. And people really love that. And some of those are pretty active. You’re watching animals run or whatever.

NANCY KEACH: Judy, a couple people, I think have asked, can we order this through JubileeTV? I don’t know what JubileeTV is. Do you know, Allyson?

ALLYSON SCHRIER: I do. And we’re just doing a rollout thing, promotion, with JubileeTV. So JubileeTV is, I think, just an amazing product. And the way that it works is that my mom’s house, there’s a TV, and the TV has a box on it. I drive that TV with my iPhone. So it allows me to determine what is going to play on my mom’s TV. And there’s a camera, so we can have video conversations. And if I need to just check in and look through her TV, I can do that.

So I love JubileeTV. And yes, there are people who have a JubileeTV box, and they have a Roku coming out the back of the JubileeTV box, which is how they take in Zinnia TV. So people absolutely will make it so that in the morning, they play the sunrise video or the good morning video to help establish time of day. Maybe four times a day they play the let’s drink water video, and mom goes and gets herself a glass of water. Maybe at 8 o’clock at night, they play the goodnight video to help mom start to wind down. And maybe in the afternoon, mom is crazy about sewing, so they play a sewing video to help just bring her some ease. So absolutely. Those two go together very well.

NANCY KEACH: I just want to say to the audience who’s still on, as most of you know who watch this, Zoom In on Dementia & Alzheimer’s, we don’t usually talk about caregiving products, services, research. But if you’ve liked this and want us to continue looking for things like this that are scientifically backed and very practical, put a yes or a check in the chat or a thumbs up. Because I personally think it’s very valuable. But we also focus mostly on research and science. People are writing in yes already. So please let us know.

As we close, I want to thank my wonderful colleagues on the BrightFocus team, Dr. Sharyn Rossi, producers Amanda Russell and Alexa Villarreal, the team at MSquared, and especially Allyson, Bill Uniowski, who’s on, and the Zinnia team for sharing the information about Zinnia with us. Allyson, you’ve taken your experience with an incredibly challenging disease, and you made a well-researched, tangible, real-world contribution to Alzheimer’s care. And I think that’s really awesome. And we all want to thank you for that.

So on the screen now, you’re seeing, how has Alzheimer’s affected you? If you are willing to share your story with us, would you please write it in to brightfocus.org/ALZstory. We would really love to be able to talk with you and share your stories. Or you can contact us at reply@brightfocus.org.

If you asked questions that weren’t answered today, like the first question that came in, what’s the difference between Alzheimer’s and dementia, there are 41 additional episodes to this one. And so I’m sure that whatever questions you have are probably covered in one of these. They are all free. They’re all on our website at brightfocus.org/zoomin.

You’ll see that Zinnia TV is www.ZinniaTV.com. And again, use the code BRIGHTFOCUS15 to get 15% off of an annual membership, which would give you this program for less than $5 a month. And then we also have a lot of additional free resources from BrightFocus, including the infographic on all the drugs that have been approved for use in Alzheimer’s by the FDA. Those are both symptomatic, disease modifying, and for agitation and later-stage symptoms. We have a lot of free resources with a lot of information. So please feel free to access these.

If this program would be helpful to you– Allyson talked about word of mouth– same for us. Please share the link to the Zoom In with at least three friends. brightfocus.org/zoomin.

And next month, on Thursday, May 7, in honor of Stroke Awareness Month, we have Dr. Jason Hinman from UCLA on. He’ll be talking about stroke, vascular dementia, Alzheimer’s, what’s the difference. But really, the relationship of heart health and brain health, which is really critical. We hope you’ll come join us on May 7.

Allyson, again, thank you so much. Really appreciate having you here. And as you further develop your technology, and I have a feeling you may go on to do additional technologies, will you come back and talk with us about those?

ALLYSON SCHRIER: You betcha. Thank you so much for having me. I really enjoyed our time together.

NANCY KEACH: My pleasure. And as all of you know, I like to end by saying, we’re glad you’re here. Thank you for participating. You are not alone. Wherever you are in the country, whatever little town, you’re not alone. We’re here for you. And life is very, very short. So hi, mom, who’s 96. Tell everyone you love how much you love them. Give them a hug. Keep them close while you can.

So thanks again to everyone who joined us, especially to Allyson. I look forward to seeing you all again soon. Be well.

Resources:

• www.ZinniaTV.com