Maude’s Awards Executive Director Marilyn Raichle was joined by Allyson Schrier, an individual 2020 Maude’s Award recipient, for a conversation about her program Thriving With Dementia and her newest venture, Zinnia TV. The conversation has been lightly edited for length and clarity.
Marilyn: Hi Allyson, please tell us about the work you do with your program, Thriving With Dementia.
Allyson: The Thriving with Dementia program is occupying a smaller slice of the “Allyson Time Pie” these days. As part of that program I still facilitate a support group for families, and I occasionally present at independent living communities and conferences on topics related to compassionate care for people living with dementia, and their caregivers.
Marilyn: You won a Maude’s Award in 2020. How has Thriving With Dementia and your work in the dementia space continued to grow or evolve since then?
Allyson: My work with Thriving with Dementia really cemented my belief that dementia caregivers need more and better tools to support both the people they’re caring for and themselves. To that end I have turned my energy more towards building those support tools. I have actually pivoted away from that work quite a bit. I am still with the UW Memory and Brain Wellness Center where I support both the Project ECHO® Dementia program and the Dementia Friendly Washington Learning Collaborative. The thing that has taken me away from teaching is my focus on my Zinnia TV project. We were accepted into the Techstars 2023 Future of Longevity Accelerator which culminated on April 3 of this year and has been amazing.
Marilyn: What an incredible honor! Has this and winning a Maude’s Award impacted what you were able to do with your program? Allyson: Winning the Maude’s Award was powerful validation of my work to help caregivers better understand dementia, and how to reduce their own stress by supporting their loved ones with kindness, patience and compassionate communication. Winning the award also expanded my network of connections with people doing similar work, creating exciting opportunities for learning and partnerships.
Marilyn: What positive impacts have you seen from your work in the community?
Allyson: I have had so many heartwarming testimonials from family and professional caregivers attesting to the way that their new found skills have served both them and the people they are caring for. I love knowing that I am helping caregivers learn skills that improve care, reduce anxiety and lower stress.
Marilyn: What do you think other organizations or care partners can learn from what you’ve done with Thriving With Dementia?
Allyson: I think the greatest take away is to understand that people with dementia are doing the best they can with a brain that is constantly undergoing change. It’s the person with the healthy brain who needs to assess and adjust as needed, because the person with dementia is no longer able to do so. Caregiving can be really hard. It can also be really rewarding.
Marilyn: Do you have anything new coming up that you’re able to share with us?
Allyson: Gosh. Lots! My focus has been on reaching caregivers with tools to help them take better care of both themselves and the person they support. To that end, I have been very involved in Zinnia, a company I started a few years ago with 3 other founders.
Marilyn: Tell me more about Zinnia.
Allyson: When my husband moved to long term care, the TV was on all the time. The care staff was overworked, and did not have time to offer personalized care. TV was their go-to solution to keep people occupied. But rather than being engaged by what they were watching, I saw that my husband and others with dementia were totally disengaged; bored, agitated, sleeping. The ‘solution’ was actually part of the problem. Doing research I understood why — TV is intended for people with healthy brains who can track a plot, tell fact from fiction, process rapidly moving audio and video; abilities memory care residents no longer have. Zinnia is an app that delivers a library of purpose-built videos digestible by and engaging for people with mid- to late-stage dementia. Our product has evolved well beyond videos that are merely engaging. Zinnia videos promote conversation and connection, reduce and soothe agitation, and help with adherence to activities of daily living. The result is that both those giving and receiving care experience less stress.
Marilyn: Is there a way to interact with your program virtually or from other locations?
Allyson: Yes, Zinnia is an app that plays on mobile devices and connected TVs. While a larger screen format is best, people also use it in-the-moment on a tablet to bring ease when out of the home, like while waiting to be seen by a doctor or to board an airplane. Videos can even be downloaded to a mobile device for viewing when internet is not available.
Marilyn: What changes would you most like to see in dementia innovation?
Allyson: Such a wonderful question!! I would like to see greater education around dementia prevention; high schools are not too soon to start getting this messaging out there. I would like to see more primary and allied care providers who are equipped to support early detection. And of course I would like to see safe and affordable solutions that eliminate or slow down progression.
I would like to see more programs that support family caregivers with opportunities for respite and in-home, affordable care assistance.
We are reaching this very scary inflection point — the number of people with dementia will get bigger and bigger, and the pool of people available to support them will get smaller and smaller. I would love to see innovation in the ways that we attract people to become paid caregivers, with tools and strategies that keep them from burning out.
Marilyn: From your mouth to God’s ear. What advice or encouragement would you offer to future applicants to Maude’s Awards?
Allyson: Really understand the problem you are trying to solve from the perspective of the person experiencing the problem, then demonstrate how your solution meets that need. Conduct interviews. Create case studies. Be prepared to explain why what you are doing is unique, or if others are solving the same problem, why is your solution best.
Marilyn: Thank you so much for sharing with us, Allyson.