Zinnia TV is an incredible new streaming service with programming optimized for people living with dementia. Allyson Schrier, co-founder of Zinnia TV, talks about the service, her story, and how she learned to communicate better with those suffering from dementia and Alzheimer’s. Allyson has been a Family Care Partner for loved ones living with dementia and firmly believes that there is life to be lived and loved with or without a dementia diagnosis. She also works at Project ECHO Dementia, a program of the Memory and Brain Wellness Center Clinic at the University of Washington.
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*The following is the output of transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors.
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The following podcast is provided by an approved senior care provider on the answers for elders radio network, and welcome. Everyone’s to answers for elders radio, and it’s amazing how the birds are chirping and the flowers are blooming and everything is coming alive with so many new things as we’re entering the world again and so many of us have been through a long pandemic and you know, the thing is either come out of this worse or for the better. And you know, we’re so amazed at some of the things that have happened this last year in our community and around us, especially for those that are taking care of our seniors, who have been hit the most. And I want to introduce to many of you that you may not heard before, but we have had her on a couple of times. Her name is Allison Schreyer and she is an expert on dementia and Alzheimer’s, and I the founder and CEO of a brand new innovation in dementia and Alzheimer’s care. Alison, welcome to the program. Thanks so much, Susanne. It’s really great to be here. Well, you know, you are like truly an Innovator, I i. I’m telling you we first interviewed you a long time ago on the show when you were talking about momentia and how these amazing support groups are getting together, and you have come forward to kind of help facilitate and put these types of programs together. And then you were a recipient of MODs awards, which we’ve had you on and talked about your story and and being and recipient of the word, you know, just because of what you’ve done. And here you are again today with another amazing, incredible concept. And so to our listeners, if you have a loved one with Alzheimer’s Dementia, this is really for you. This is for you to help you in supporting them and giving them a way to use their brains in a really positive direction and something that you can help them understand and and grow through, I think, in many cases. So, Alison, welcome to the program I’m so glad you’re here. So it is called. First of all, before we get into your Zenia TV everyone, so think about that. I want to learn. We haven’t really spent a lot of time talking about your background in your story and how you got into dementia. Sure well, not intentionally, I can tell you that. Yeah, so my thank you for asking, and my story is that my husband was one of the rare five percent or fewer of people who get dementia younger than the age of sixty five. So he was in his mid s when he was diagnosed with a something called fronto temporal dementia, and our kids at the time we’re twelve and fifteen. So I was suddenly thrust into this world of having my husband, more and more each day, start behaving more like a teenager and my kids starting to become teenagers. It was really challenging. It took US six years to get a diagnosis because, of course, not all dementia’s impact one’s memory, and his memory wasn’t impacted, and so therefore doctors diagnosed him as having things like adult onset add so for six years we lived with these incorrect diagnosis and then we found out that what he actually had was a progressive, chronic form of dementia called FRONTO temporal dementia. So I was suddenly placed in the role of trying to figure out that world, like so many of your listeners, I’m sure, where you feel like you are the only person in the world who has ever had this happened to you, because you know absolutely nothing about it. So trying to do that research, trying to figure things out, trying to figure out how to care for him in a really powerful and meaningful way around the same time my mother’s husband, my stepfather, was diagnosed with vascular dementia. Around the same time, my father’s wife started showing symptoms of cognitive decline, which turned into full blown Alzheimer’s disease following a surgery. And so suddenly I was supporting my parents from afar with what was going on with their sweethearts, while I was supporting my husband. And so, yeah, I just read a lot. I joined support groups. I cannot say enough about support groups. Anybody who is living with dementia in their lives as a care partner should absolutely be taking care of themselves as well, and one of the ways that we do that is by joining support groups. And I began reading everything that I could, watching videos. I discovered Tipa snow. So TEEPA snow, for those of your listeners who aren’t already wearing her, she’s amazing. Yeah, and so I eventually started just taking some classes with Tipa and just bolstering my own understanding about how to be a good care partner. MM. Well, and you know, what you’re saying is so true. So many of us to get into this work due to our own personal stories. You know, our listeners know that my mother had vascular dementia, so same as your stepfather, right. Yeah, and and you know it’s there’s such a hard part of being a care partner and taking care of a loved one when you’re there’s like still a stigma out there of you know, my parent has dementia and I can’t really talk about it to the average person. So what you’re saying is there’s either a I don’t want to talk about it, I don’t want to come and see your parent because I don’t know. I mean I’m feeling kind of uncomfortable. So sometimes you have that with siblings, you know, grandchildren, family members, and you know, niece’s nephews, anything like that. Old Friends. So the their world keeps get small, getting smaller and smaller, not only because of their cognitive ability, but also the people that were around them and their lives, because people tend to stay away. I mean we have you found that? Oh my goodness. Yeah, so I did to pop in there for second, please. I should. I should be wearing a shirt that has in emblazoned across the front, Stigma Buster. I love that. I am all about if you have dementia and your family and one of your loved ones has develop all of dementia. I really believe that the best thing that you can do for that person and for yourself is to tell the world that your partner has dementia. So one of the first things I did is I emailed everybody that I knew and I told them, Hey, this is what’s going on with my husband, and there are a few reasons why I did that. So over this period of time when we didn’t know what was going on with him, but he was really behaving like a different person, I think that a lot of people lost respect for him and they thought that he was just kind of like, you know, are quotes, losing it or whatever, and I wanted to preserve his dignity and to tell people know what’s going on is that his brain is dying. He has a disease. It’s not something he asked for, it’s not something he deserves, but his brain is no longer functioning the way that it was. And how amazing are we that we are still going to grocery stores, we’re still going to movies, we’re going to restaurants, we’re doing all of these things. We are staying remote involved in our community. I am talking to people about how to communicate with him so that they can visit with him. And the first my first entree into the world of okay, so I’ve learned some things. How do I tell people about it? Is that I reached out to senior services at the King County Public Library and I said, Hey, I want to do this talk and I’m going to call it how to be friends with people living with dementia, because I thought that’s one of the things that’s keeping people at bay is that they don’t know how to be with people with dementia. And so this is a lecture that I now do regularly with independent living communities and it churches and it libraries to just get out the word. Hey, people living with dementia are vital and viable and they need to be respected and what we need to look at is what they can do and not what they can’t do. Right and and you know, like we say, understanding and and to understand is to have much more of a comfort doctor. You know it’s it’s the unpredictability or that you know that concerned that people might have over it. And I know I see it all the time with people like in my life even my sweet husband, you know, he’s not in the world that I’m in, and not that he doesn’t love that I do the work that I do, but I forced him, sadly, to go to like events that we do, and you know, he’s like he’s just feels like a fish out of water at times and I realize that it’s on me to spend more time with him to help him understand more. But then on the other hand he kind of giggles and I’ll say, honey, those are your people right. So he kind of separates himself from that because he just doesn’t comprehend how to how to make that bridge. So somebody like you could help somebody like him to say, you know, Oh, I didn’t realize that, you know, when they asked me the same thing over and over again, or they ask me things that, you know, I don’t know that maybe I should just go along with it, or should I tell the truth? Or what you know, happens? And so there’s all kinds of things that, you know, he feels like, I don’t know what to say kind of thing, and so I think that’s so important, Alison, that you do this kind of work and and you know, I would like to really go into our next segment here talking a little bit about, you know, the person’s brain when they’re on, you know, when they have a form of dementia. There’s different forms, obviously, but still there’s there’s a cognitive decline and prognosis. And so to understand, you know, to really step into that world and talk a little bit about it and and’ is that okay with you? Also, like our next segment, happy to share whatever I know. I always need to qualify by saying I am not a healthcare provider, I’m not a medical prevas but I’m happy to hear what I know right. That’s awesome. In the meantime, we’re going to be talking about Allison’s brand new concept that is ready right now kicking off, based out of here in the Pacific northwest. That is absolutely phenomenal. We shared a little bit about it on social media. I’ve got a lot of response from our, you know, our followers. So anyway, for all of you on Allison, what just tell us really quickly about how to Find Zinny a TV, so zine a TV Zinnia, like the flower Zny a TV. If you go to Zinnia TVCOM, you will arrive at our website, where you will have an opportunity to view our gently paced videos that are specifically intended for people living with dementia. I can’t wait to explore this further and everyone, alison, will be right back. Right after this. We at answers for elders. Thank you for listening. Did you know that you could discover hundreds of podcasts in our library on senior care? So visit our website and discover our decision guys. That will help you also navigate decision making. Find US at answers for elderscom
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Originally published June 13, 2021