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Summary
This episode of Care Lab features a heartfelt and insightful conversation with Allyson Schrier, co-founder and president of Zinnia TV. She shares her journey as a caregiver for her husband who was diagnosed with frontotemporal dementia (FTD) at age 47. Allyson recounts the emotional, logistical, and societal challenges she faced during his diagnosis and care, and how those experiences inspired her to create Zinnia TV—a tool designed to improve quality of life for people with dementia through slow-paced, engaging video content. The episode also discusses the broader implications of dementia care, the shortcomings of traditional care systems, and how personalized, non-pharmaceutical interventions can have a profound impact.
Key Questions Answered
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What inspired the creation of Zinnia TV?
Allyson Schrier's experiences visiting her husband in memory care and noticing the lack of engaging, appropriate media for people with dementia led her to co-found Zinnia TV. -
How does Zinnia TV help individuals with dementia?
It offers slow-paced, plot-free video content that promotes engagement, reduces agitation, and supports daily routines like eating and bathing, helping caregivers and residents alike. -
How can tools like Zinnia TV support caregivers in daily routines?
Zinnia TV videos can ease transitions into difficult tasks (like bathing or eating), offer moments of calm, and create shared experiences that strengthen the caregiver-patient bond. -
How can caregivers maintain their emotional well-being during long-term dementia care?
Regular self-care, support groups, therapy, and finding moments of respite—like watching a relaxing video with a loved one—can help caregivers avoid emotional exhaustion.
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What’s one piece of advice for new caregivers of someone recently diagnosed with dementia?
Learn about the condition early, seek support immediately, and remember: you can’t do it all alone—build your care team and access available resources.
Transcript
Emilia Bourland
Hi everyone, welcome to Care Lab.
Brandy Archie
Welcome to Care Lab everybody. I'm super excited, not only because it's Friday, but also because we have Allison Schreier here today. And I'm so excited for you guys to get to know her because she's a wonderful person. And she's also the co-founder and president at Zinnia TV and was a caregiver for her husband with dementia. And she turned that experience into a career focused on helping both people with dementia and those who care for them. And Allison became a dementia educator.
teaching both family and professional caregivers about best practices around supporting people with dementia. And then following that, Allison helped launch and then manage an education program at the University of Washington to equip primary and allied healthcare providers to better diagnose and support patients living with dementia. And Allison was honored to be a recipient of the 2020 Maud Award.
for Innovation in Alzheimer's Care, which is amazing and was also named Visionary Caregiver of 2020 by Caregiving.com. She sits on the Health and Medical Subcommittee of the Washington State Dementia Action Collaborative. So she's working from all angles to try to support and facilitate support groups for spouses of people with dementia. So Alison, thanks for taking some time to meet with us.
Allyson Schrier
It is my pleasure to be here. Thank you for having me.
Emilia Bourland
Okay, so again, thank you so much for taking the time to be here. We're really excited to have you on. Before we can talk about any of the important work that you've actually done though, I have an icebreaker question for you. Brandi, you're gonna recognize this question because it was inspired by the conversation that we were just having. so Brandi and I were just talking about
Allyson Schrier
Okay.
Brandy Archie
Okay.
Emilia Bourland
upgrades and how sometimes when you get upgraded to something, then it makes it hard to go back to that previous level of whatever it was that you were that you were used to. I call this the thread count effect, where like if you go up a thread counting sheets, you best be prepared to stay in that thread count because you're not going to want to go back down. So my question is, what is something that you have like
Allyson Schrier
I'm sorry.
Emilia Bourland
been upgraded on or you have done the slightly better version of it where now you just cannot go back.
Allyson Schrier
That's a great question. The first thing of course that pops into mind is when I get upgraded to first class, which doesn't happen very often, but I have no choice. I have to go back because I can't afford to fly first class.
Allyson Schrier
away.
Allyson Schrier
Two things popped to mind for me. You know, I'm gonna say, when I won the Mods Award, I was given some money, $5,000. And I knew before I even applied for that thing, I was like, if I get that $5,000, I'm buying a new bicycle. And so I bought myself a really, really nice mountain bike.
And now every now and then if I'm someplace and I have to rent one or I have to borrow one from somebody else, I am like such a mountain bike snob. I will not ride just any mountain bike. So that's, there's my answer.
Brandy Archie
Hmm
Emilia Bourland
Mm.
Emilia Bourland
That's a great answer. Yeah, that's a great answer. Brandy?
Brandy Archie
That's a good one. That's a good one.
Brandy Archie
I think there's probably more of these in my life than I can think of right now. But the one that just comes to mind, because it's like kind of the first time that that happened, was me and my husband are both really into sports. And especially before we had little kids, we went to a lot of sporting events. And we used to just say like, as long as we're in the building, get the energy, get the vibes, you watch the game, it's good. And one time we lucked up on some closed seats for a cheap price. And it was like, yo.
can't do anything but this. Like if I'm coming to the game, I need to sit close or I need to go at home, go watch it at home with multiple, you know, they give you all the angles on TV, right? So you get all the angles. So now it's like, if I'm gonna go, we're gonna have a good seat. So yeah.
Allyson Schrier
I love that.
Emilia Bourland
Yep, that's a good one too. so Brandy, you know, I gave up caffeine mostly a while ago, but I would say that for me, like coffee is a great example of this. There is a amazing like coffee roaster in our neighborhood in Dallas where we live. And there it's like the coffee, it's just so good. And like once you have had really
great coffee, you just can't go back.
Brandy Archie
and can't go back to Folgers.
Emilia Bourland
No, no. So the nice thing about that is too is like, it is certainly expensive for coffee, but it's also like, it doesn't break the bank. So it's like a sustain. You can be relatively sustainable. Yeah, yeah. Same experience with like, I once flew first class, Allison, and I was like, dang, this is so good. And I can't afford to fly.
Brandy Archie
You can keep doing it.
Allyson Schrier
I like that.
Allyson Schrier
Right? You're like, don't get used to that girl.
Brandy Archie
Right.
Emilia Bourland
Yes, so I try to like not remember when I'm like sitting back in economy. I just try not to remember. I try to block out of my mind what I know is going on up there with the special people.
Allyson Schrier
sorry.
Allyson Schrier
You
Brandy Archie
my gosh. The comforts of life. That's like such an interesting way to think about like how we talk about our lives as with our spouses or with the people that we care for. And so, Allison, I would really love it if you could share with the audience just a little bit about like your caregiving journey about how it was to care for your husband and how that like launched you into all of these things.
Emilia Bourland
Mm-hmm.
Brandy Archie
Zeny TV only being one of them and many other ways to try to create some change and improvement in our society around care for people with dementia. if you'd like talk to us about the beginning, that'd be great.
Allyson Schrier
Sure. Well, so as I think you said, my husband was diagnosed as a pretty young guy, right? He was just 47 when he was diagnosed with frontotemporal dementia. And for the six years leading up to that, he was getting stranger and stranger and stranger, which is...
typically the case with FTD, right? It's not like Alzheimer's disease where he's getting lost going places or can't remember things. Instead, there's just sort of this wholesale personality change taking place, which is making him kind of a challenging guy to be with. And our kids were young, you they were just 12 and 15 when he was diagnosed. So for the six years leading up to that, right, they're little kids. And I'm a stay-at-home mom. I'm focused on the kids.
to a great extent, but I'm also getting less and less and less support from my partner, who meanwhile is like losing jobs and it's just so not him, right? He was a rockstar software engineer at Microsoft and just kind of couldn't get his stuff together. He did partway through that those six years.
wholesale made a choice that he was going to leave Microsoft and pursue a PhD at the University of Washington and like that didn't work out. So anyway, so when we finally got his diagnosis after seeing many, many therapists and psychiatrists and neuropsychologists and neurologists, we finally got a diagnosis and it was kind of a relief at that point to understand what was going on. And one of the
overarching things that I remember well is that I was so angry with him, so angry for just like non-functioning. And he had been misdiagnosed as having adult onset ADHD. And the adult onset piece being, they said, well, you know, you've probably had it your whole life, but you're such a high functioning individual that you've been able to cope with it. And now that you're getting older, you just can't manage the symptoms any longer. But
Brandy Archie
Mmm.
Allyson Schrier
here are these strategies and this medication, do these things and you'll be fine. And yet he wasn't fine. And so I was angry because I was like, gosh, I know so many people with ADHD who are able to manage it. Like, what's your problem? You're obviously not trying hard enough. So irritation, irritation, irritation. Once we got the diagnosis, it's like all of those like molecules of anger and irritation were sucked out of my body and replaced with sadness.
And I will take sadness over anger any day because anger is directed at a person and sad, or at least in my case, right? Anger was directed at a person and sadness wasn't directed at a person. And instead I was able to get that all of this stuff that had been happening over these previous years was not willful. It was just the changes in his brain that were causing him to be somebody who he wouldn't have liked to be.
Brandy Archie
Mm.
Allyson Schrier
but he had no choice. I would say that the caregiving years were, it's really hard when you have kids at home. I mean, it's hard for everybody. I don't want to be like, wah, poor me. But it definitely adds a layer of complexity to have kids at home because you're managing their emotions, you're managing your own emotions. You're in this interesting place and I...
Brandy Archie
and
Allyson Schrier
I go back to this and I still haven't figured it out and I don't yet feel like I can ask my kids about this. But the question of like, how did I do? Because I'd like to be able to share that with other caregivers. And what I'm talking about there is how did I do in terms of being honest with my kids about my experience? Because the dishonesty was that I hid my despair.
I felt like, okay, I cannot visibly fall apart. Like I can't fall apart in front of the kids. And so therefore I went completely in the other direction of trying to maintain like positivity and we're gonna make it through this and we're good, we're good. And instead I would cry in the shower. I would say like, mom needs to go for a drive kids. And I would just drive along like, sobbing while I'm driving and park someplace and scream. I didn't wanna let them see that I was
really having a hard time because I thought that that would be scary for them. On reflection, I don't know if the messaging there was that they are weak because they're not as strong as I am. yeah, anyway, something, something I still, as I said, that I'm still kind of grappling with. The first, my husband was diagnosed in 2012.
Brandy Archie
Mm-hmm.
Brandy Archie
Yeah.
Allyson Schrier
And there was a lot of upheaval in our family at that time because we lived on a dead end road, 10 acres at the end of a dead end road. And I recognized that my husband wouldn't be able to drive any longer. I was going to have to get a job. I was going to have to do something. My kids were enrolled in a private school at that time, which we were able to afford because my husband had had a great job. I had no idea what our financial future was. So the kids had to change schools. We had to move.
so that we could be someplace where they could walk to schools and my husband could walk to coffee shops or whatever. And so there were all of these changes that happened at the same time. We lived in an apartment for a year instead of our house because I had to figure out whether or not we were living in the right space. So it was just a really fraught time and trying to manage his care, figuring out who should his doctors be and what are our care goals? It was...
there are lots of blank spots right about the details because I was in such a state and also I was I had a career at that time I was working as a writer and I was in about I had a contract to publish my first novel and I also had non-fiction projects that I was working on.
And then my husband got this diagnosis. So I was in revisions on all of these writing projects. So was managing those at the beginning while getting all of this other stuff done. it was a crazy time. And so as I said, he was diagnosed in March of 2012. By 2014, we had moved into a new house in 2013. Things were kind of starting to normalize a little bit. Like the kids were back in school. They had stayed out of school for quite a while.
But by 2014, we couldn't all live in the same house any longer because his behaviors were too troubling for the kids to be around.
Emilia Bourland
I was going to ask you about that because you are navigating an immense amount of life change and life management, not just for yourself, but for your entire family. And I think that single parents doing that, it's just an incredibly difficult feat to try and do those things. You are also doing that while managing the care of your
husband who ostensibly you thought was going to be like is supposed to be your partner supposed to be helping with all these things and and beyond that because of the nature of of FTD.
Allyson Schrier
Mm-hmm.
Emilia Bourland
there were probably additional layers of complexity because the personality changes that can come along with FTD can frankly be really unsettling sometimes and unpleasant. So it wasn't even just that you were caring for another person. You were trying to care for another person who maybe was not the easiest, who maybe didn't want to be cared for, who maybe was doing things opposite of what you needed to be happening.
Allyson Schrier
you
Emilia Bourland
who may have been openly resistant to some of the things that you needed to make happen. How on earth did you manage that?
Allyson Schrier
I don't know, you know, I don't know, just fortitude, I guess. mean, so very early on in his diagnosis, I received a phone call from a woman who somehow knew about me through the social worker at our neurologist's office. And she asked for permission to reach out to me and just have a call with me to just like welcome to the club kind of call, right?
Emilia Bourland
Mm-hmm.
Brandy Archie
Mm-hmm.
Allyson Schrier
phone call was eye opening because her, she started off by saying, get ready for a shit show. And I thought, well, that's not very positive. And she went on to talk about her, the way that her family fell apart. Her husband wound up living on the street. I mean, it was like, it was a disaster. And I got off that call and I thought, okay, well, there you go. I am not, that's not going to be my narrative. We will, we will not self-destruct.
And so my job is to not self-destruct. so certainly I had a support group very early on. was really lucky to find a support group that was a great fit.
Brandy Archie
Mm-hmm.
Allyson Schrier
And I remember one of my friends, the friend who brought me into the support group, was somebody from my writing circle and his wife had young onset Alzheimer's disease. And I remember we would carpool to the support group together. And at one point he said, you know, when things are going just really bad and I feel like nothing's ever going to be okay again, I think to myself, at least I'm not Alison.
You know, there was verification within my social circle that, it was pretty bad. But you know, all you can do is you just take every day. And you also have these things that are shiny that are sort of off in the distance, like some hopeful things. Like that, I don't know. Like I knew that eventually...
once we knew that my husband was going to be living in long-term care, that was both a horrible thing, right? Who wants their partner to not live with them any longer? But at the same time, it was like, wow, maybe we'll get a little bit of relief when that happens. But there was a very long period of time when I was in denial about the fact that that's what had to happen, right? Denial that he not live with us any longer. And it was only when the kids...
Brandy Archie
Mm-hmm.
Allyson Schrier
the kids were both in therapy, I was in therapy. So that was a blessing, right? That everybody was getting outside help. But when the kids therapists both were like, okay, either they have to leave or he does like this cannot continue. The kids are getting destroyed by this. But then trying to find a place for a person who has FTD, especially at 47, right? So for all of those years when he couldn't work, he was working out.
Emilia Bourland
Yeah.
Allyson Schrier
He's a beautiful man and he was ripped because he was working out all the time and his way of dealing with the world was he was so angry about the things that he couldn't do anymore and he couldn't manage that anger. And so there was a little bit of fear that we lived with. Like there were plenty of times when he approached me as though he was gonna push me, but he always stopped himself. But I thought, man, there's gonna come a day when he's not gonna stop himself.
he's way bigger than I am, or is he going to hurt one of the kids? I was really scared. And this, so then having him get assessed by the different communities who we were hoping might accept him as a resident. And they were all like, yeah, no, we can't risk having this guy, because it wasn't like he could keep it together during the interview. Say something, piss him off. he's like,
Brandy Archie
Okay.
Emilia Bourland
No. You're like, he... Yeah.
Brandy Archie
Thank
Allyson Schrier
even start swearing at them and pointing at them. And I'm like, okay, there's another one that's not going to take it. Whoo boy. So yeah.
Brandy Archie
It's not going here.
Emilia Bourland
Yeah, it's you got FTD. You got FTD. Like you can't mask that. It is what it is. Yeah.
Allyson Schrier
Right. Yeah, yeah. But anyway, once he did move into long-term care, and that was kind of a crazy thing too, we found a community that was desperate. They had just opened up, they had many, many empty beds, they had to fill them. And so they were willing to take him.
However, there was a twist there as well. we, you everybody got their hopes up. I told the kids, hey, we found a place. Daddy's going to be moving to this place. And Evan wanted to move, by the way. At that point, he was so irritated with the kids. He was so irritated with life. And we, we worked, I worked with his doctor.
And I said, Evan needs to hear from you that this is the best thing for his brain because he's in kind of a narcissistic space right now. If it's good for him, he's going to want it. So if you could explain to him all of the reasons why it's better for him to go live in this beautiful place where he has his own apartment, there's a man cave with a keg that's tapped all the time, like you're gonna love it there. And she did, she was a champ. So we went to see her, she told him that he needed to move out. And so by the time we left, he was excited to go.
but that, that weekend, was a fellow who moved into that same care community who had been in a day program that I had tried Evan in, but it didn't work out well. Evan was, out of control at the daycare thing. He was really angry about being there. And this guy, when his family was moving him in the weekend before we were supposed to move in, he said, Evan's not going to be here. Is he? Like, what are the chances, right?
Brandy Archie
Okay.
Allyson Schrier
But the community looked at his wife and they were like, Evan, and she said, we were in a day program and there was this man named Evan. He'd been a Microsoft engineer. He was a horrible man, horrible, terrible to be with. my God. So when I then went in to start the process, they called me up and they were like, before you move in, we need to have a chat. I came in and they said, yeah, we need to withdraw. Like he can't come here. We have this person here.
Allyson Schrier
So, sorry. I called the care community and I said, please, please, you have to do this for us. And they did. They did, they took him.
Emilia Bourland
I think that your story really highlights one of the great challenges of finding good care for people who have many different types of dementia. One is that there is a really poor understanding in...
Brandy Archie
Mm-hmm.
Allyson Schrier
Yes.
Emilia Bourland
Even the best well intentioned care communities, a lot of the time, there's not a great understanding of the differences between different types of dementia. Like Alzheimer's is not the same as FTD, is not the same as Lewy body, like is not the same as vascular dementia. All of these things are going to present differently. And so what we will often like term as a like behavioral problem, right? Or someone will be labeled as a
Allyson Schrier
Absolutely.
Emilia Bourland
problem has to do with either the underlying type of dementia that they have and the types of changes that it is causing in their brain and or the fact that we are expecting this person who has brain changes to adapt to us and our environments instead of adapting to them. And I think that that's where kind of Zinnia TV
Allyson Schrier
Yes.
Brandy Archie
Yeah.
Emilia Bourland
comes in a bit too is understanding that.
When we can create better experiences for people with many types of dementia, when we can create better experiences for them, we can also help to improve other people's experiences around them too. And if communities can understand that, then we can make life better for a lot of folks and maybe have less of this, well, you can't come here because.
Allyson Schrier
Right. People need tools.
Brandy Archie
Yeah.
Brandy Archie
Totally, because the whole purpose for being able to have, that is the next step. That is the place that people need to go, right? In order to have like that 24 seven supposedly trained set of people to be able to help manage that care because it's really hard to do as one person. And if they're not willing to help accept those cases, which like...
that your story is very challenging, but it's not the only story either of challenges. You know what I mean? And like, even like people who have traumatic brain injuries and like things that are like maladaptive behaviors or things that we don't want to, that are hard to deal with, we as a society need to have a better priority for making sure that everybody gets the care that they need.
Emilia Bourland
Mm-hmm.
Allyson Schrier
my gosh, yeah. And I do a lot of work with families and I hear from people far too often, I need help finding a place because the community is about to kick out my partner, right? Or my mother or my father or whomever it is that there have been behavioral issues and they don't want him or her any longer. So what do I do? And it's like, wow, what do you do is, what do they do? Like they should be figuring out. I know. mean, I,
Brandy Archie
Mm-hmm.
Brandy Archie
Better ways.
Allyson Schrier
Right? And it's hard. There's no easy solution here. But oftentimes, answer is, certainly the answer is not that you change the person who has the mental health condition, whatever it might be, right? The answer is that we look at what are the triggers? What did we possibly do that caused the person to respond in that way? So it's a much more, I don't know, it's a much deeper problem.
Emilia Bourland
Yeah.
Emilia Bourland
Yeah, because like from the perspective of the family of this person who needs to who needs to be cared for in memory care or long term care or something like that, like that. And there really does for the vast majority of people, there comes a point where it is almost impossible to care for someone with dementia in your own home all by yourself. It just becomes too overwhelming. And and
Allyson Schrier
Or yeah.
Emilia Bourland
We and so that's why we need places that specialize in different kinds of dementia care. But when the place that's supposed to specialize in it is telling you we don't know how to handle this, you have to do it on your own like and you're sitting there like, but I can't do it on my own. That's what you're supposed to be there for.
Allyson Schrier
Yeah.
Emilia Bourland
Just crazy.
Allyson Schrier
It is, I agree. Yeah.
Emilia Bourland
So tell us a little bit about, obviously, through this experience, you started to figure some things out. You started working on Zinnia TV. Can you tell us how that process started and how you got there?
Allyson Schrier
Yeah, absolutely. So ZinniaTV came from my experience visiting my husband in memory care. And there are two things that happened that sort of catalyzed this idea of what would ultimately become ZinniaTV. The first was that I discovered, as many people do, that it's challenging to have an engaging visit with a person who's nonverbal.
Brandy Archie
you
Allyson Schrier
or who has low verbal skills. And so I would, because you just chatter, right? You sit with them and you say, well, boy, it sure is nice out there. Oh, look, there's a bird, right? You just like, la, la, la, meaningless stuff because you aren't getting any responses. So I would bring pictures, I would bring magazines.
Brandy Archie
Okay.
Emilia Bourland
Mm-hmm.
Allyson Schrier
and I would flip through and I would find an interesting image and that would then have a, I could think of a story that's associated with that image. look, look where she is. I think that it looks like that woman's in Hawaii. I remember when we went to Hawaii and so then I would have a story to tell. I eventually started using my phone, right? I'd bring my phone or my tablet and I discovered that Apple has that little built-in, their memories.
program, is the thing that automatically generates those little videos for you out of your photos. Or you can create your own little videos based on it. Like show me all of my dogs, put all the dogs into a video. So we could look at little videos together, slow paced music in the background. We could watch, he was able to pay attention.
Brandy Archie
Mm-hmm.
Allyson Schrier
we would find things that I would be able to talk about. And I know that if he had had verbal skills at that point, it would have been something that he could comment on because he's able to pay attention to it. So that's sort of data point A. Data point B is that I would arrive way too often and find my husband who was in a wheelchair, right?
parked in front of a screen watching like Hallmark movies or Turner Channel or the news or Filipino soap operas or whatever it might be. And he wasn't the only one. There would be a few other people in the room and they're all just sitting there watching. I won't say that they're watching, being subjected to and something that's totally uninteresting to them. And so you look.
Brandy Archie
Mm-hmm. Mm-hmm.
Emilia Bourland
Mm-hmm.
Allyson Schrier
their responses, right? Some people are asleep. Some people are looking around the room. My husband might be pounding on his chest, which is what he did when he was anxious. And so I thought, gosh, there's got to be a better solution. Like these little videos that I'm making would be better than watching these shows that they that they're not able to hang on to. And so I started doing research to figure out, what would be appropriate programming? I hate to draw parallels between children.
and those who are living with dementia. But it did occur to me at that time, like Sesame Street is available for little kids and it specifically deals with where it meets them where they are, right? So why isn't there something that meets people with dementia where they are? And the question is, where are they? So doing this research, I found a paper that was called,
Brandy Archie
Right.
Allyson Schrier
television viewing and people with dementia living in long-term care. And I thought, well, gosh, that's what I'm looking for. And it was the head researcher was a woman by the name of Dr. Kate DeModiros. And so through reading her paper and having multiple conversations with her, what I learned is that people who are living with dementia,
are no longer able necessarily to track a plot or tell fact from fiction or process rapidly moving audio and video. And so therefore, if you're going to have anything that appeals to them, it needs to not have those characteristics, right? No plot, right? It has to be slower paced. And in fact, in her study, in her research, they showed people, I love Lucy, Jerry Springer, Bob Ross. And the thing that seemed
It wasn't definitive, but the thing that seemed the most compelling was a show called Vienna, which was slow-paced images.
a beautiful imagery set to music. And I'm like, well, that's what I'm doing on my phone. And by the way, just before I get back to that, a couple of weeks ago, I attended the Michigan Assisted Living Association Conference where I did a panel that was called No Tech, Low Tech Solutions. And the panelists were all people from the National Council for Dementia Minds who were living with dementia. And so I posed the question, what do you like to watch on TV? And
except for one person who was still fairly, had pretty powerful cognitive skills. He liked to watch the news. Everybody else said, don't watch anymore because I just, there's too many characters. It's moving too fast. I can't keep up with it. So back to the Zinnia story. I,
Brandy Archie
Mm-hmm.
Allyson Schrier
wound up, I thought, well, gosh, so I could make more of these videos and maybe I can even find a way to put them on the TV at the care community. But I need to have more topics. Like not everybody is going to watch videos about my cat or my dog or my kids. So my background is in technology before I started raising a family. That's what I did. So I had friends at Apple, reached out to them.
And I said, I want to talk to whoever had something to do with this product that I'm using, this memories product, because I need to figure out how do I get more content? And how could I then get these videos to play on the TV instead of on my phone? And so the fellow I wound up chatting with had actually just left Apple, but he was the designer of that product that I was using. And as we were talking, he had this sort of like forehead slapping moment where he said, my gosh, we never thought about that use case of
using these slow paced videos to help people who have cognitive challenges that prevent them from being able to digest normal paced television viewing or video viewing. And so he said, you know what, I think that we could do something with this. He lived in Vancouver. So I live in Seattle. I drove up to Vancouver and we had a meeting and it was at that meeting that we, brought in a person who was a visual artist and a filmmaker.
And we said, you know what, we could do this. Like we could create videos that are specifically meant to be engaging and digestible by people living with dementia. And we might be able to productize that in some way. And so that's what we did. So that was the beginning. That was in 2018. And so we started off just making content, built content, content, and testing it, going to people's homes, going to long-term care communities. And we were extremely lucky.
out of the gate to have a philanthropist in Canada love what we were doing. And so he donated funds that were matched by a Canadian governmental entity. And we were able to do a two year research project at the University of British Columbia in conjunction with Vancouver General Hospital to test these videos in long-term care communities and in hospital settings. And it was through that process that we were able to determine
Allyson Schrier
how we best make these videos to solve some of the issues that caregivers have. Like, how do we create content that actually promotes connection and engagement, helps with conversation? How do we, pardon me, create videos that, how do we create videos that reduce agitation and anxiety? How do we create videos that help with the adherence of activities that we need to complete each day?
Brandy Archie
Yeah.
Allyson Schrier
showering and eating, drinking water, using the toilet. And it was during that process that we also realized that it's not going to work to just have this thing as a website. We need to actually have an app. And so we were able to use some of those same funds to build an app, which we released in October of 2022. So there you have it.
Brandy Archie
That's amazing. so now I have to know like, what did the data show? Like I know you use the data to be able to plan out the content that is now Zinnia TV, but like what were the data points that were the most compelling from the study that y'all did in Vancouver?
Allyson Schrier
Yeah, sure. So they went up publishing five papers and I need to be clear that it was qualitative data, not quantitative. So they weren't saying like 98 % of the time, right? But what they were saying is that the overarching discoveries that they published were that Zinnia in a long-term care setting helped the staff better connect with the residents. And it also helped.
residents better connect with each other. And so I was sitting in a long-term care community showing a video that was our waterfalls video. And I would do this, like just watch people watch, right? I'd be a fly on the wall just watching people watch. And so what I saw was the same kind of thing that they saw.
which was, for instance, these two ladies who were watching the waterfalls video, and one of them turned to the other one, and she said, I have been to that waterfall, it's one of my favorite places. And the other woman said, I was there too, I love that waterfall. And what I thought to myself is, okay, that waterfall is in Papua New Guinea, neither of you have been there, but it doesn't matter.
Emilia Bourland
But it doesn't matter. It doesn't, because they're connecting. They're connecting.
Brandy Archie
Doesn't matter! They're talking to each other!
Allyson Schrier
Exactly. You are connected with each other over the thing that you are both able to pay attention to because it is big enough, beautiful enough. It's visually captivating. And it is something that is moving slowly enough that you have the time to focus on it. And also there is no conflict from a sensory perspective. You do not also have somebody, a couple of people walking in front of the waterfall talking, right? Carrying on a conversation.
Brandy Archie
Mm-hmm. Mm-hmm.
Allyson Schrier
So that one the things that they discovered. The other thing is that they tested the videos in Vancouver General Hospital, as I mentioned, and they shared with us a video that they shot of a gentleman having an experience with one of the videos. So this is a gentleman who was living in the hospital because, going back to our earlier conversation, he'd been kicked out of his care community.
because he would have these in first. And so they couldn't place him. And so therefore he's living in the hospital. And the hospitalists are dealing with the fact that there's this guy who on a regular basis gets amped up and they need to find a way to soothe him. So they had a ceiling mounted projector in a room at the end of a hallway. They used to have a TV at the end of the hallway. However, he broke the TV.
Brandy Archie
man.
Brandy Archie
Mm.
Allyson Schrier
So they did a ceiling mounted projector and they showed this video of him walking into the room where they are displaying on the wall our cars video, classic cars video. And they knew that this guy was a car buff. And so you see in the video, this guy walk into the room, he's visibly agitated, but he notices the car video and you watch him relax. And he walks to the front of the room and he's got the video on one side of him.
the care staff is on the other side and he is now the expert in the room and he's talking about the cars. He's explaining what they're seeing. So he goes into this sort of professorial mode and can you imagine what that's like if you're used to being a person who is disrespected, who is not recognized for having anything to offer and now suddenly like what a dope meeting hit, right? Like you're the expert in the room.
And so one of the things that they talk about in their publication, that researchers, is Zinnia as a tool to reduce agitation and anxiety. And this is something that we have seen again and again from family caregivers and long-term care communities who send us testimonials about how Zinnia helps them. And we are delighted that based on this, we are now doing a quantitative study at a place called the Brett Howard Foundation in Calgary.
Brandy Archie
right.
Allyson Schrier
that's looking at Zinnia specifically as a tool to reduce inter-resident aggression, to reduce the use of antipsychotics, and to reduce emergency room trips. So, wow. So that was, again, one of the data points that they found. And then another one was the use of Zinnia to help with adherence to activities of daily living. And what they found is that in the moment, if we're about to shower,
Brandy Archie
Mm.
Allyson Schrier
Our shower is, there's less anxiety about showering if we first watch a video that just shows people showering, people showering and loving it. Look at that beautiful water. It's so warm and wonderful. my gosh, there's a dog showering. Look at that kitty cat showering. And so it just sort of like lightens the mood, takes away the anxiety about the fact that we are about to do this thing. And they discovered that if they watch these videos on a daily basis, that in general,
it reduces anxiety about whatever the activity is. So those were the three main findings. And we were very, very fortunate that at around the same time, right after our app came out, we were invited to do a study, a pilot, I guess, at Brookdale Senior Living, who ran in five of their communities. And their findings, again, from a qualitative basis,
were the same as what the researchers had discovered, that staff had an easier time working with residents because of the fact that they had a tool that helped them reduce agitation, they had a better way to connect with the residents, and that they had greater acceptance around activities of daily living because they implemented the use of these videos.
Brandy Archie
think that's like so, so sorry, I'm so powerful because as a person and occupational therapists and some other professionals too are trained in this art of like therapeutic use of self in order to help match and mirror and help bring down agitation and change people's mood and, try to work with them. Right. Like we go to school to learn how to do this thing and you practice it and you can get good at it. But that means like my 30, 45, maybe an hour treatment.
Emilia Bourland
There's
Brandy Archie
is a great time, but teaching that to somebody else is challenging. It takes time, it's hard. hard to teach a caregiver who's never had any experience with it, much less a, like a nurse's aide who's the one really dealing with the person every day and doesn't have any of that background. And so it's like so powerful to me that like, this is a tool that's applicable to, know, anybody can turn it on,
Allyson Schrier
Yes.
Brandy Archie
And like you already know that it can have those same kinds of effects that therapists can have, but without the skilled care that's necessary to do that. And then that can be proliferated throughout the day and used in different places. Like that's just so amazing.
Allyson Schrier
Yeah, I think so too. Thank you.
Emilia Bourland
And I just wanted, okay, so there are a couple of things that I wanted to point out that I think are really, really beautiful about what you're doing at Zinnia and what it accomplishes. One is that, and this is something that like Brandy and I talk about a lot and that as occupational therapists, we think about a lot, is that when you can create experiences that meet people where they're at, as opposed...
When we, and we can, right? Like so often we just choose not to, we try to make people fit into the box that we think everyone should fit in. And that's just not always possible. But when we can tailor experiences to be things that people can participate in where they're at, it's just amazing how the world opens up and how suddenly people are capable of things that we didn't think that they could do.
Allyson Schrier
Mm-hmm.
Emilia Bourland
and you know both physically and mentally sometimes and and when we see people actively participating and playing a role and making connections like it's almost sort of mind-boggling that so much of the way we have handled these things in the past has been the opposite of that because it just feels like the most natural thing in the world to do is to actually take a moment
figure out where someone is out and meet them there. And then it can be better for everyone if we take that moment. The other thing that I want to point out, and then I'm just going to let you talk because everything that comes out of your mouth is brilliant and wonderful. And I could listen to you all day, is how important it is to have these types of solutions that are not necessarily medication based because
Allyson Schrier
Right.
Brandy Archie
Yeah.
Emilia Bourland
We can't like a lot of times when people have and again, if you are listening to this, I'm saying behavioral problems in quotes, because that's actually one of my pet peeves is when when folks with dementia are deemed as having behavioral problems. We're having an experience problem, not a behavior problem. 90 percent of the time here that that is just like, OK, well, let's put them on an anti psychotic. Let's put them on an antidepressant.
Brandy Archie
De- behavior problems, yeah.
Allyson Schrier
Great.
Brandy Archie
Yes.
Emilia Bourland
Let's put, and like, I get that those are tools in the bags of tricks and maybe sometimes they can be appropriate. But so often when we can do this more simple thing of altering the experience or the environment and meeting people where they're at, we don't need those drugs that don't necessarily solve the problem, right?
Allyson Schrier
Well, and that they create new problems. Yeah. Cognitive loss. And now I'm a fall risk. Right. So yeah. And to your point about the first thing that you were talking about, like discovering things about people and ways to connect with them. We, I had a conversation recently with a woman who, whose story I just loved. Sorry about that. That's my, don't know to shut that off. Anyway, there's a,
Brandy Archie
and can add more. Yes!
Emilia Bourland
Exactly, exactly.
Allyson Schrier
There's a story I'd love to share about a woman who I heard from recently, volunteers in a long-term care community and has been working with a gentleman for a year and a half in that community who's nonverbal in a wheelchair, was formerly a writer with the LA Times.
She shows him a video, we have a new category of videos that we created that are quizzes, and they're slow-paced quizzes that slowly reveal the answer to the question. And this quiz was about American literature. And so she thought, you know what, he was a writer, American literature just might be interesting to him. And she said, so she puts on the quiz and the first question,
is about the book Tom Sawyer, is about the character Tom Sawyer and a book that he is in. And she said, and this guy sat up in his chair and he yelled out, Huckleberry Finn. And she was like, what? And she said, he got every one of the answers right. Like he shouted them out. And she said to look at, nonverbal guy. And she said to look at the like pride, right? Just the joy that he felt at.
Brandy Archie
It has been non-verbal.
Allyson Schrier
Being the guy, it's like the person I told you about who was the car expert. And she said, so that was wonderful. And she said, but what was most wonderful is that for a year and a half, I have recognized that this guy is one of the invisible people. Nobody sees him because he doesn't make a fuss. He just sits there. He's just wheeled around from place to place. And she said to watch the staff jumping around, hugging him, saying, John, my God, John, woo, you're the man, right?
And she said, suddenly they saw that there was an unlock. There's a way in, but you have to be willing to look for the key. And so one of the things that I love about stories that we hear from people about using Zinnia TV is that for people like John, it serves as that key that helps you find a way to get the person to open up and...
and feel like part of the community to have something to offer. It's just I love that.
Brandy Archie
I really would appreciate it if you would tell the audience how they can find Zenia TV and if they want to connect, what's the best way to do that?
Allyson Schrier
Yeah, thank you very much. So Zinnia TV is, best thing to do is go to our website, which is zinniatv.com. So Zinnia is like the flower. So it's called Z-I-N-N-I-A followed by TV.com. And it's called Zinnia TV because I am a mad gardener and Zinnias are one of my favorite flowers. And one of the things that I appreciate about them is that wherever you put them, they grow, even though the soil is terrible, they seem to manage.
And so our thesis early on was trying to help people like blossom beyond their diagnosis. But these days it's really our thesis is really like, if he's happy, I'm happy. yeah. Yeah. So zinniatv.com where you can sign up it's $70 a year for family caregivers for a subscription and
Brandy Archie
Yeah.
Allyson Schrier
For long-term care communities, they call us and there's a rate that's based on the number of people that are being served. But yeah, that's it.
Brandy Archie
Yeah, and you also can find more information about ZeniaTV at AskZenia.com and she was so gracious to be able provide us a coupon code. So if you do sign up for that annual subscription and use the AskZenia20 discount, you get 20 % off. So we would really love it if it makes sense for you and your family to use ZeniaTV that you get started.
Emilia Bourland
We'll think.
Allyson Schrier
Yes.
Emilia Bourland
Allison, thank you so much for being on CareLab today. It was absolutely such a pleasure to meet you. Thank you for sharing your story with such candidness and openness. It was really, really wonderful to learn from you and listen to you today. Listener, if you made it to the end of this episode, and I hope you did because it was, I think, all just really wonderful from Allison here today.
Allyson Schrier
Mm.
Emilia Bourland
Then please take a moment to like, subscribe, follow us so that you can get updates when our next episode is released. If you enjoyed this, take a second, share it with someone else who you think could also benefit from this story and this information. We'll see you right back here next time on Care Lab. Bye.
Brandy Archie
Bye everybody.
Allyson Schrier
Bye bye, thank you.
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