Allyson Schrier on Turning Caregiving into Innovation, Founding Zinnia TV and Reframing Dementia Through Storytelling
“I used to visit my husband with my iPhone and iPad. He wasn’t verbal anymore, so what do you talk about with someone who can’t talk back? I’d bring magazines, photos, and tell stories, because I love telling stories… Eventually, I found Apple’s Memories program… That kind of thing really worked for Evan. I started making my own little videos and wished I had more content… That was the beginning of Zinnia.”
I had the pleasure of talking with Allyson Schrier. Allyson is a dementia care advocate and technology entrepreneur whose work emerged from personal crisis and evolved into systemic innovation. As co-founder and President of Zinnia Technologies Inc., she has helped reshape how caregivers and families engage with individuals experiencing cognitive decline. Her approach, rooted in storytelling, practicality, and lived experience, has earned recognition in both academic and caregiving communities.
Schrier’s path to becoming a leading voice in dementia care began not in medicine or technology, but in writing and software education. Raised in Connecticut in a working-class family, her father was an electrician, her mother a homemaker, Schrier describes her early years as relatively unremarkable, marked by a love of nature, stories, and self-directed projects. That mix of imagination and initiative carried into adulthood. After graduating with a finance degree from the University of Connecticut, more as a concession to her parents than out of passion, she drifted into the early tech world. At a time when personal computing was just emerging, she learned new systems on the job and quickly became an educator and consultant in the field.
Her early career included stints at accounting firms, startups, and even a position managing IT systems for one of Microsoft co-founder Paul Allen’s companies. Eventually, she moved to Seattle, where she established herself in technology circles while also exploring creative work, including a master’s program in writing. But her trajectory shifted dramatically when her husband, Evan, began exhibiting puzzling behavioral changes in his 40s.
The couple’s search for answers stretched over six years, involving therapists, neurologists, and numerous misdiagnoses, including adult-onset ADHD. Schrier’s own doubts were confirmed when a psychiatrist urged further testing, which eventually led to a diagnosis of frontotemporal dementia (FTD), a degenerative brain disease marked by profound personality changes and loss of executive function. The diagnosis brought clarity but also ushered in years of caregiving, emotional strain, and reorientation for the entire family. Her husband would eventually move into long-term care, and Schrier was left to stabilize life for their two sons while rebuilding her professional identity.
In the process, Schrier discovered both a need and an opportunity. During visits to her husband’s care facility, she experimented with using visual stimuli, videos, images, and music, as a bridge to connection. Noting the calming and engaging effects of simple, purpose-built visual content, she began envisioning a tool specifically designed for people with dementia. This concept evolved into Zinnia TV, a streaming platform launched in 2019 that delivers curated, dementia-friendly videos intended to stimulate memory, soothe anxiety, and foster interaction.
Zinnia’s development involved a collaboration with Frank Lee, a designer previously involved in Apple’s Memories feature, as well as a team of technologists and artists. The company initially released its content free of charge during the pandemic, using that period to gather feedback and refine its offerings. Research partnerships followed, including with the University of British Columbia and Vancouver General Hospital, supported by philanthropic funding. A formal app launch in 2022 brought Zinnia into the marketplace, and the platform has since gained traction among care communities and families seeking alternatives to pharmaceutical interventions.
Schrier’s impact extends beyond her company. She served as Program Manager for the University of Washington’s Dementia ECHO initiative, helping train healthcare providers across the state to recognize and respond to cognitive decline more effectively. She has also worked as an educator for caregivers in long-term care settings and has been recognized with honors including Maude’s Award for Supporting Caregivers.
Central to Schrier’s philosophy is a commitment to preserving dignity and recognizing capability in people with dementia. She frequently shares stories of non-verbal individuals re-engaging through Zinnia content, such as a former journalist who unexpectedly answered every question in a literature quiz, or a woman who began speaking again after watching a video about sewing, her lifelong passion. These moments, Schrier argues, highlight the cognitive and emotional complexity that remains even as verbal and behavioral faculties deteriorate.
Schrier’s work is also informed by a broader conviction about inclusion and visibility. As someone who experienced feeling “different” during her own childhood due to a serious back injury, she developed a lasting sensitivity to how people are treated when they fall outside social norms. That perspective has shaped her commitment to building tools that reflect ability rather than limitation.
Now based in Michigan and continuing to lead Zinnia’s development and outreach, Schrier is working to expand the platform’s research base and increase awareness of its potential. She has also proposed new projects to showcase the artistic capabilities of people with dementia, aiming to challenge prevailing assumptions about cognitive decline and creativity.
While Schrier continues to navigate the business and advocacy aspects of her work, she remains grounded in the caregiving experience that launched her journey. Her approach blends technological literacy with a deep personal understanding of the emotional landscape of dementia care, a combination that has positioned her as an effective, and often empathetic, voice in a field where innovation is frequently as much about listening as it is about building.
Yitzi: Allison, it’s an honor and a delight to meet you. Before we dive in deep, our readers would love to learn about your personal origin story. Can you share the story of your childhood and how you grew up?
Allyson: All right. Nobody has ever asked me that before. I consider my childhood to be pretty benign. I was born in the New York area, New York specifically, but when I was four, my family moved to Connecticut. I was raised there. I was an outside kid, always playing in the woods, playing with lots of other kids. I was one of four children. My mom was a homemaker, my dad was an electrician. So there wasn’t anything that really stood out, nothing that made anyone say, “Wow, this kid’s going to do great things” or “This kid’s different.” I just felt like part of a pack.
I think, this wasn’t your question, but it came to mind, some of the early things that informed who I am now include my love of playing in the woods, using my imagination. I loved making up stories and telling them, often inspired by things happening out in nature. I went on to really appreciate good writing. I did my master’s in writing and worked as a writer for a time. I was writing when my husband became ill, and although I don’t have many regrets, one thing I do look back on is how hard it was to stop writing to focus on other things.
From my childhood, storytelling and imagining were huge for me. Another really profound moment came in fourth grade. My teacher was out for a while, she was pregnant and had measles, and when she was coming back, I stood up in class and said we should have a party. I organized the whole thing at ten years old, and we pulled it off. Later that year, I said, “I think we should have a field trip.” I’d done a little research and found out we were going to be doing the play You’re a Good Man, Charlie Brown. I said we should go see it in New York, and I actually made that happen. That was a big aha moment for me: you can make things happen. All you have to do is imagine it, put words to it, tell people, and things can come together.
I’ve always had an entrepreneurial spirit. My first money-making venture was when I was very small. My dad had grown these little tomato plants, and without him knowing, I put them in a wagon and sold them around the neighborhood. He came home and said, “Where are my tomato plants?” and I said, “I sold them.”
Since he was an electrician, he used to bring home wire. I’d strip the wire, bend it into rings, and wear them to school. The other kids loved them, so I said, “For 25 cents a strand, you can have your own wire.” I started filling my bookbag with wire and sold it at lunchtime. I was probably 11. Eventually, the school administrators shut that down. It wasn’t okay for one kid to be coming in and selling things to classmates.
Life goes on, of course. I think the first time I realized that life isn’t all joyful was when my parents’ marriage started to fall apart when I was still young. Until then, I felt like I was living in a fairytale, like I was a character in Snow White or something. The animals didn’t talk, but everything felt happy and good and normal. Suddenly, it was like being on a boat that had sprung leaks. That experience shaped me later in life in a couple of ways. Watching how my parents communicated, very caustically, I knew I never wanted that. I wanted to be in a relationship where that kind of communication didn’t happen.
Another significant moment, this is jumping back a bit, was in third grade, when I was eight years old. I broke my back roller skating. I landed hard, sitting and moving forward at the same time, and it crushed three of my vertebrae. I ended up in a back brace for most of a year. It was this big, bulky thing. I wore an undershirt, then the brace, then a shirt over it. It had screws sticking out. I’d take it off at night to sleep. People pitied me. They stared at me and treated me like I was different, but I didn’t feel different. I just had a back that didn’t work as well as everyone else’s.
That experience shaped who I became. I’ve always felt that people who are different shouldn’t be treated like they’re different. We should focus on what people can do, focus on their strengths. Nobody likes feeling like an outcast or feeling less than. That perspective has really informed the work I’ve done as I’ve gotten older.
I went to high school, then on to university. I think my two big regrets from that time are, first, discovering boys way too early. I was so focused on boys, like, “Do I have the right amount of mascara on?”, when I could have been growing in so many other ways. No offense, but there were better things I could’ve been focusing on. And second, I just wanted to have a good time. I’m very social, and that was a high priority for me.
I don’t know if either of those things are really important for you to know, but they popped into my head. I graduated from the University of Connecticut with a degree in finance, mostly because I didn’t know what else to study. My parents agreed to help pay for school, but only if I studied business. Both of them were children of immigrants, and we lived in a very wealthy town, even though we weren’t wealthy ourselves. My parents had friends whose kids went to Ivy League schools and graduated without a job. They’d say, “What are you going to do with that English degree?” So my parents were like, “You must go to college, but you must study business. Business is the future.” So I got a finance degree.
It was so not me. My first job out of college was at a big accounting firm, where I basically sat in a room and added up columns of numbers with an adding machine. I’m old, so this was quite a while ago. Then there was this job opening, they needed someone to figure out how to use this new device they had just gotten: a Compaq portable computer. It was the dawn of personal computing. Nobody knew how to use it, but I thought, “It’s got to be better than adding numbers all day,” so I volunteered.
They gave me a little office and the computer, and every time new software came out, Lotus 1–2–3, WordPerfect, tax software, it was my job to learn it and decide if it was something the firm should invest in. This was one of the big eight accounting firms at the time, Ernst & Whinney. I remember running into my boss’s office one day saying, “It adds up the numbers! You just type them in, and it adds them up!” It felt like a miracle. The invention of the spreadsheet was a total game changer.
That was a huge pivot point for me. I’ve been really fortunate in the way opportunities have just opened up. I don’t take a lot of credit for it, it’s like the world just nudged me along. Study finance? Ugh. That led to the accounting job, double ugh. But then that led to discovering computers, and I got really into it. I often tell people my background is in technology, and that’s where it began.
What I discovered is that if you really master something, people want to hear from you. That idea showed up again later in my life. I got really good at these software programs and, as computer networking came along, I became good at understanding and teaching operating systems. I ended up leaving the accounting firm and joining a small startup. That decision also played a big role later. The startup did accounting software, and because I had a background in finance, I could help companies computerize their accounting systems. I could explain things like accounts payable and receivable and show them how to use the software. I spoke both “finance” and “tech,” which made me really useful.
I did that for a while, lived in New York, then in Hoboken, New Jersey, for way too long. When I was 29, I’d had enough. I was done. So I left and went to Africa. I spent a year traveling through Africa and Asia. I started off with a group called Encounter Overland. They brought together about 20 people from all over the world, all in their twenties, except for a few outliers. We had a truck driven by an ex-cop from Zimbabwe, and we just bounced our way through Africa.
At the end of that trip, I’d met a girl I really clicked with, and we traveled together for another five or six months in Asia. That experience was completely life-changing. I realized there’s so much more to life than adding up numbers. There’s more to life than work. But I was able to take that trip because the work I did was lucrative. People were willing to pay good money for me to teach them things they didn’t know how to do.
That’s what led me to Seattle. I came back to New York, got a good-paying teaching job, but I just didn’t want to be in New York anymore. I didn’t know where I wanted to be, so I decided to travel again. This time I went to New Zealand. While I was there, I met a woman who was trying to do the same kind of technology work I’d been doing in New York. She said, “Oh my God, we could totally partner up and bring all this stuff to New Zealand.” I got really excited about the idea.
But I needed some time to figure out if I actually wanted to live there. So I bought a little car and traveled around New Zealand. While I was there, I met a woman from Seattle, and we started chatting. I told her that I was planning to partner with another woman I’d met to start a business, just to be clear, not “hooking up” in the modern sense, but actually starting a business together. She said, “Wow, but New Zealand? Your family’s in Connecticut.” And I said, “I know, I know. But where else can you have the mountains, the water, and a tech scene that’s just coming to life?” And she asked, “Have you been to Seattle?” I said no, and she said, “You should totally check out Seattle before you commit to New Zealand.”
So I went back to New York, went to the New York Public Library, and pulled out the yellow pages for Seattle, because the internet didn’t exist yet. I found a couple of recruiters in the Seattle area, called them up, and said, “Hey, I’m coming out to Seattle.” I ended up flying out and got a job at a software company owned by Paul Allen, you know, the other Microsoft billionaire. They offered me a position, and I said yes.
I moved out to Seattle and managed their IT systems. I did that for about a year, but I couldn’t keep doing it. I’d get phone calls from Paul at 3:00 in the morning like, “I’m in Japan and my email’s not working.” And I’d be like, “Okay, hang on…”
Eventually, I left that job, and then Paul’s sister reached out. She said they were setting up a new building and needed someone to come in and set up all the computer systems. She asked if I could do it as a contractor, and I said yes. That job led to a couple of years working with the Allen family, managing Paul’s personal tech projects, which was totally wild. I spent months in Amsterdam helping build his yacht, figuring out how to integrate personal tech into the yacht. I lived in France for a while working on a chateau he bought in Cap Ferrat, in Nice. Our job was literally to say things like, “Let’s take down that tapestry and put a big TV there.” It was kind of heartbreaking, but that was the assignment: turning it into a tech space.
Somewhere along the line, I met an amazing guy, got married, got pregnant, and left the tech world. That was the end of the first chapter.
Yitzi: Amazing. So, please tell us the second chapter of how and why you started your current company.
Allyson: Yeah, you bet. So, I married my husband and we had two sons. Not super early, I was 35 when I got married, had my first child at 36 and my second at 39. My husband was a software engineer working at Microsoft. Between my first and second child, I started noticing that he was changing. At the time, I never would’ve guessed it was his brain. I thought it was his heart, he was becoming distant, aloof, making decisions on his own that should’ve been shared. And it triggered something from my childhood, I didn’t want a bad marriage. I’d seen what non-communication does, and I was determined not to go down that road.
So I kept trying to figure it out. Is it me? Is it him? What’s going on? Eventually, he left Microsoft and went to the University of Washington to pursue a PhD in computer science. But he never completed it. He just couldn’t get things done. It was like a scene out of The Shining, he’d sit at the computer for hours and accomplish nothing. He was stuck, just spinning. I kept thinking, “What is going on with you?”
When he dropped out of the PhD program, I thought, okay, now it’s my turn. I’d always loved writing, so I enrolled in a low-residency master’s program at Vermont College of Fine Arts, studying writing for children and young adults. While my kids were little, I’d been taking writing classes at the University of Washington. I’ve always been a storyteller, and I wanted to figure out how to take oral storytelling and turn it into written stories.
Meanwhile, my husband got another job as a software engineer, but it didn’t go well. Within a year, he was laid off. They told him he just never caught fire and that he didn’t seem like the guy his résumé said he was. So he started seeing doctors and therapists. At that point, we thought it might be depression, he had always been low energy, and he could get pretty down. A psychiatrist said he was struggling with depression, but also that he might have late-onset ADHD. I remember thinking, “I’ve never heard of that,” and it turns out that’s because it doesn’t exist. But we went with it, for six years.
During that time, I was getting more and more frustrated. I thought, “Other people with ADHD manage their lives. They use lists, sticky notes, medication. What’s your excuse?” I was angry. I could feel my parents’ marriage repeating itself in my own, and I hated it. So I went to see a therapist, determined to save my marriage.
I started telling her about his behavior, the things he did, the things he said, and she listened. I told her he’d seen a neuropsychologist who said there were big disparities between what he should be able to do and what he was actually doing. That doctor also thought it was ADHD. Then he saw a neurologist who did an MRI and said, “Well, buddy, it sucks to be you. There’s nothing wrong with your brain.” Years later, that same MRI was reviewed by specialists who immediately saw abnormal brain shrinkage for someone his age. We’d been going to the wrong doctors.
About six months into therapy, I had a “whiteboard day.” I listed all the things I’d witnessed recently that were clearly not ADHD. One example: we were at an outdoor family movie night in the park, and my son said, “Mom,” and I looked over, my husband had his penis out and was masturbating. At a family movie. Another time, we were at the dinner table and instead of saying something normal like “pass the salt,” he said, “I’m very horny, can we go upstairs?” I was just like, what is happening?
I also told her about how he couldn’t function, like when our driveway was freezing over and I was outside with a pickaxe trying to figure it out, and I asked him for help. He was playing a computer game and just said, “I don’t want to.” I said, “I don’t want to either, but someone has to fix this.” And he said, “You have to. I don’t want to.”
I laid it all out for her and said, “This isn’t normal behavior.” And she agreed. She referred us to a psychiatrist. We met with her, discussed everything, and then a few days later she called and said she needed to see just me.
When I went in, she said, “Your husband does not have adult-onset ADHD. There is something very, very wrong with his brain, and we need to figure out what it is.” She gave us a list of possibilities: B vitamin deficiency, iron deficiency, sleep issues, we tested them all. The last thing on the list was a PET scan. That’s what we ended up doing.
The PET scan revealed that he had frontotemporal dementia. And that was the beginning of the next chapter.
Yitzi: Please, please continue with the next chapter.
Allyson: The next chapter. Evan has dementia. And for families who get this kind of diagnosis, you start looking back and recognizing patterns. I did that and realized that a characteristic of frontotemporal dementia is this pulling away from the people you’re close to. There’s a loss of executive functioning, you can’t make a plan and follow it through. You have difficulty with any kind of sequential processing, which is true of most dementias, but with FTD it’s really intensified.
Unlike most dementias, someone with FTD experiences a major personality change. They just start seeming like a different person. For Evan, it came across as this very narcissistic presentation. And I know that word is overused, but it really did feel like that, everything was about him and what he needed to do. His pulling away from me and the kids made sense in that context. It was what was going on in his brain.
I became a full-time caregiver. I was in the final revisions of my first, and still only, published novel. I had to write to the publisher and say, “We’ve had a bit of a setback. It’s going to take me a while to get these revisions done.” But we did it, we got it done.
Then I started making phone calls, trying to figure out where to go, what to do, who to get help from. And dealing with the kids, that’s a whole separate thing when there are children in the mix. They knew we were trying to figure out what was wrong with Daddy. When we came home with the diagnosis, we sat down together and I explained that he had FTD and that it wasn’t going to get better.
It was a mess. The kids didn’t go to school for weeks, and when they did, they often left early. Their grades tanked. That could be a whole other sub-chapter we could talk about sometime. It was really hard, managing their emotions, my emotions, my husband’s emotions. The constant question: do I be the strong one or do I show them what it looks like to be safely vulnerable?
I chose to be the strong one. I only cried in the shower or in my car. I went on walks every day and fell apart. I’d scream while driving. I just wanted my kids to believe: we’re going to be okay. I’ve got this. We’re going to make it through.
Very early after the diagnosis, I got a call from someone who got my name through the social worker at our doctor’s office. She had a husband with FTD, and her family had completely fallen apart. Her kids went off the deep end, and her husband wound up living on the streets. I thought, “Okay, I am not that person. My family is not going to be that family.” I was trying to find a strategy that would help us come out the other end intact. I focused on being pragmatic and practical as much as possible.
Within a couple of years, my husband moved into long-term care. The main reason was his behavior. He could still brush his teeth, comb his hair, and get dressed, but his behavior had become so extreme that it wasn’t safe to have him around the kids.
The most difficult thing was his frustration with the things he could no longer do. He’d get all the ingredients out for a ham and cheese sandwich, bread, ham, cheese, mayonnaise, and then just freeze. I watched him start clenching his fists, then slamming them on the counter and screaming because he didn’t know what to do next. He couldn’t figure out how to start. He couldn’t play the computer games he used to enjoy. The kids would try to help, but he’d end up yelling at them because he was angry that they could do it and he couldn’t.
Even going for bike rides, he’d get upset if I was ahead of him because he was supposed to be the faster one. So, he went into long-term care.
Then I had to ask myself: now what? The kids were back in school, things were stable-ish, though my younger one was starting to go down a dark path. But it was time to figure out how to support the family. We’d been living off savings for years. The hope was still that the kids would go to college. I needed to find work.
I thought back to when I was an expert in computer networking systems and people were willing to pay me because I knew something valuable. But I didn’t feel like I was an expert in anything anymore. I was trying to figure it all out, taking jobs. I got a job at Microsoft as an executive assistant, and there has never been a worse executive assistant. I couldn’t even manage my own life, let alone someone else’s.
That came about because I went to the department my husband had worked for and asked the manager for help finding a project management role. She said, “I need an executive assistant.” I told her, “You’re making a big mistake.” She said, “No, I think you can do this.” So I tried it.
Then came the next phase. It was 2017. My older son was already in college and my younger son had just started his freshman year. Evan was in long-term care. The kids were gone. I could actually go be with my dad, who was dying. I stayed with him for a month at the end of his life.
He knew I was stressed about finding a job. I had already quit Microsoft, it just wasn’t working. I had done another contract before that, and when it ended, I was relieved. I kept taking jobs I didn’t like and wasn’t good at.
One day my dad grabbed my hands and said, “My girl, you should be doing this. You’re so good at it.” I asked, “This? Taking care of someone?” He said yes. And I said, “I’m good at it because I’ve been doing it forever. But I can’t keep taking care of people.”
Still, it got me thinking. I started taking classes and learning about best practices for supporting someone who is declining. And I thought, maybe if I get good enough at this, people will pay me to teach them how to do it. That could be my job.
I ended up getting certified to teach caregivers in Washington State. I worked in long-term care communities, teaching caregivers how to do their jobs better. Then I took a job at the University of Washington with the Memory and Brain Wellness Center. I launched and managed a program that trained doctors to be better at understanding, detecting, and diagnosing dementia. It took us six years to get a diagnosis for Evan, and I was determined to help improve that process.
I did that job for several years and I loved it. But in the background, I’d been doing something else too. It goes back to my fourth-grade self saying, “Just do it. Do the thing you think you can do, and tell people about it.”
I used to visit my husband with my iPhone and iPad. He wasn’t verbal anymore, so what do you talk about with someone who can’t talk back? I’d bring magazines, photos, and tell stories, because I love telling stories. I’d talk about our lives, the world. Visuals helped a lot.
Eventually, I found Apple’s Memories program. You know how your phone will say “Me in the woods” and show you a video set to music? That kind of thing really worked for Evan. I started making my own little videos and wished I had more content, videos of skiing, mountain biking, rafting, all the things he loved. But I didn’t have that kind of media on my phone.
I contacted friends at Apple from my tech days and asked, “Who worked on the Memories program?” That led me to Frank Lee, who had just left Apple. He was one of the designers on the team that built Memories. I told him what I was doing and he said, “We never thought about this use case, for people with cognitive differences.”
At the same time, I came across a paper by Dr. Kate DeMediros called “Television Viewing for People with Dementia Living in Long-Term Care.” I reached out to her and told her about my idea to create dementia-friendly videos. Her study found that of all the shows they tested, I Love Lucy, Bob Ross, news, the most accepted by people with dementia was something called Venice, which was just beautiful images of Venice set to music. I realized, that’s what I’m doing.
So Frank and I built a team. That was the beginning of Zinnia. It was just the four of us, Frank, me, Berenice Freedom, a brilliant visual artist who created our videos, and Bill Yniowski, our CEO and business lead.
We had startup experience between us and decided to just go for it. We were lucky early on to have a Canadian philanthropist fall in love with our project. He funded two years of research at the University of British Columbia in partnership with Vancouver General Hospital. His funds were matched by a Canadian governmental research entity.
We didn’t get the money directly, the educational institutions did. But it allowed us to create a body of content that we released online for free during COVID to gather feedback. Then at the end of 2022, we launched our app. That was the beginning.
The app delivers our content, and we continue building and researching. We now have three research projects underway. We’re hoping to get an NIH grant, though funding is tough right now.
I’m here in Michigan because tomorrow I’ll be leading a panel of people with dementia. They’ll be watching Zinnia and giving feedback, some of it will be hard to hear, some helpful, but it’s going to be fun. People with dementia tell it like it is.
And that brings us up to date. Oh my god, what a good listener you are. Thank you for giving me the opportunity to just share all this.
Yitzi: You’re an amazing storyteller, really. Can you share an example, without saying any names, of someone using Zinnia, outside of your husband, and how it benefited them?
Allyson: Oh my god, yes. I can share some recent stories that really excite me. This past summer, we hired an intern to build an AI-based product that would allow us to rapidly create a very specific quiz format. It shows an AI-generated image, asks a question, presents possible answers, then slowly removes the wrong ones until only the correct answer is left. Then you move on to the next question. That intern was my son. So for me, that was just incredible, being able to work with him on something meaningful. He never wanted to be a software engineer because his dad was one, and it felt too close to home. But he became one anyway.
I took him with me to the Consumer Electronics Show. He never really talks about his dad, it’s just too raw. But I overheard him talking to people at the booth, saying, “I built this for my dad. My dad would have loved this.” That meant so much to me.
Anyway, one of those quizzes, this is the story I want to share, I just heard about recently. A volunteer at a long-term care community in Napa told me about it. There’s a man there, John, a former writer for the LA Times. He’s non-verbal and sits in a wheelchair. Knowing he was interested in words, she decided to show him our American Literature quiz. She had no expectations, he can’t talk, but maybe he’d find it interesting.
His daughter happened to be visiting that day. The staff were moving around, doing their usual thing. The first question comes up, and suddenly, John shouts out, “Huckleberry Finn.” The volunteer is stunned. His daughter is stunned. He went on to get every single question right, shouting out the answers. The daughter was crying. And for John, the dopamine hit was amazing. He’s someone who’s become nearly invisible. No one really pays attention to him. But in that moment, he was the star. The staff were all around him, rubbing his shoulders, saying, “John, you’re the man!”
The volunteer said, “Allyson, I’ve been at that community for over a year and a half, and I think this was the first time the staff actually saw him.” That moment showed them that there’s something still going on inside, and Zinnia helped unlock that.
She also told me another story, about a woman lying in bed while her son and husband visited. Nothing was really happening, and the volunteer asked what the woman loved. They said she was an avid seamstress. So she played the sewing video. The woman was sitting up, eyes closed. A few seconds in, there’s the sound of fabric being cut with scissors. Her eyes opened. She watched the whole video. And when it ended, she started talking, about sewing, about the things she’d made.
One of the compelling reasons to use Zinnia is that it helps us find a way in. How do we connect with someone? When we did our initial research at UBC, three main use cases emerged. The first was connection. Zinnia enables connection and engagement, not just with caregivers, but between residents in the same community.
I’ve seen this firsthand. I go to communities and watch people using Zinnia. One time, we were playing our “World Waterfalls” video, beautiful footage of waterfalls. One woman turned to the woman next to her and said, “Why, I went to that waterfall. It was beautiful.” And the other replied, “I’ve been there too, it’s my favorite.” And I’m thinking, “It’s in Papua New Guinea. Neither of you have been there.” But it doesn’t matter. What matters is that they connected. It created a shared reality for them.
Another early story that sticks with me happened at a conference. A woman working in long-term care came up to me and said, “We’ve got this resident who sundowns every day, around 4 p.m., she becomes extremely agitated. Per the doctor’s order, we give her an antipsychotic daily. But then she becomes a zombie, which increases her fall risk.” She said, “This woman was a pediatric nurse for 40 years. Let’s show her the ‘Babies’ First Year’ video and see if that helps.”
And it did. Within minutes, the woman was riveted, reaching out toward the images, cooing, giggling. By the end of the video, she was completely calm. No drugs. Just a video that tapped into who she was.
That same outcome was reflected in our UBC study. And now, we’re almost done with a research project in Calgary, this time quantitative, because the UBC work was qualitative. The Calgary study is looking at whether Zinnia can reduce ER visits, antipsychotic use, and inter-resident aggression, which is a major issue in memory care.
So, yes, those are just a few stories. I could tell you dozens more, but those are the ones that come to mind right now.
Yitzi: Allison, because of your amazing work and the platform that you’ve built, you’re a person of enormous influence. If you could put out an idea or inspire a movement that would bring the most amount of good to the most amount of people, what would that be?
Allyson: Well, I have something I’m trying to build. The conference I’m at right now is all about people with dementia. I like to celebrate what people can still do. I’m going to start looking for funding because I want to create a video that showcases people with dementia doing the things they do well.
For example, there are so many art programs for people with dementia, and what we discover is that they often have a unique way of seeing the world. They’re able to create art from that perspective. I want to create a video that features art done by people with dementia, clips of them playing music, sculpting, painting. I want to share it with the world to show that just because someone has dementia, it doesn’t mean they stop being. It doesn’t mean they stop having thoughts, feelings, or creativity.
Our job is to find ways to bring that out. So I want to create this proof-of-concept video that focuses on art and gets this message across. You get it. That’s what I want to do.
Yitzi: Allison, how can our readers continue to follow your work? How can they support, watch, or participate in the great work you’re doing? How can they support you in any possible way?
Allyson: Oh man, by telling people about it. We have some really great statistics, like 78% of people who sign up for a free trial of Zinnia end up subscribing. How do you sign up? You go to our website.
But really, no one gets a dementia diagnosis and thinks, “Oh no, what streaming service am I going to subscribe to?” People don’t even know we exist. So what I ask of everyone is: just tell people. Tell people to tell people to tell people.
Yitzi: Allison, it’s been so wonderful getting to know you and hearing about your great work. I wish you continuous success, good health, and blessings. And I hope we can do this again next year.
Allyson: Thank you so much. Thank you for using your talents to get the word out about amazing things happening in the world.
Yitzi: It’s my pleasure. A pleasure and an honor.
Allyson: Keep up the awesome work.
Allyson Schrier on Turning Caregiving into Innovation, Founding Zinnia TV and Reframing Dementia… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.