 All righty, hi everybody, it's so nice to see you all here and for us to be in person doing this again. This is the third Alzheimer's Advocacy Day that I've organized since being with the organization. My name is Meg Pauly for those of you who don't know me. And last year we had the honor of using the Lieutenant Governor's office as our spot because there's no more rooms for public meetings in the State House. It was very cramped. I don't know if you all have seen the photo of that, but we did have, I don't know, 30 or 40 people inside his office trying to mingle and, yes, it's very small space. So this year I invited him to join us to give us some opening remarks about advocacy and about the legislative session. So we're going to start with a few remarks from our Lieutenant Governor, David Zuckerman. Yeah, I try to open my office to groups of folks to meet, but I think we've learned maybe 35 or 40 is a little too many to fit. And I also just want to, I know you're going to be with Meg a lot today and many of you have known Meg now for a few years in her role. I go back a long ways with Meg and I am sad to have lost her amazingness, but I'm really glad that you have her amazingness. But you've probably learned it already. You'll continue to learn it. But let's give Meg a round of applause for all the work she does. I really think these advocacy days are a critical piece of how things get done in Vermont, how change happens, how you're speaking up either as folks with Alzheimer's and different forms of dementia, as well as caregivers and friends and folks that are in the orbit that so many people are in, making sure your legislators learn more about it, understand the needs that people have, the challenges that people have, bringing your voice to the statehouse will make a difference. It doesn't always happen overnight. Politics is slow, but these advocacy days are really important, so I'm glad you're out being a part of it. I've learned a lot more about Alzheimer's since Meg's involvement and the events in my office, but also the information coming to me. I've been at a couple of the Shelburne walks to meet with many of you who have been up at that particular walk in the fall. So learning more and more, learning a lot about how many hours of unpaid care many people give as family members, as spouses or siblings or children and just loved ones, millions of hours across the country, I believe I was told 28 million. And we as a society I think need to shift how we operate and the expectation of what people can do when you're trying to work and afford housing and afford food and also have that kind of time commitment. So there's so many different aspects to this that as governance we need to be looking at. You know it's important as I said earlier in terms of your advocacy, you know it. And this is something I say to farmers, this is something I say to teachers, this is something I say to engineers, most of those legislators are not as knowledgeable about your topic as you are. Each of us are humans, we each know our world, you know I'm a farmer. I've been in politics a long time so I've learned a lot about a number of things but each person who's a legislator knows their world, knows their family experience, knows their occupational experience, knows their life experience. But none of us know everything by any means. And you are the experts and they have no staff. So you as their constituents are their library of information. You are their expert to go to. So develop those relationships not just today but then you know foster that over time and that will have an impact as legislators learn more, know more and then when the subject matter comes up they go oh yeah I know Daryl and Daryl is telling me about you know this factor or that factor and they'll be more attuned to the issues. Another aspect of what you do by coming to the state house regularly as well as the walks and being present and visible in your work is destigmatizing Alzheimer's and dementia. It's like so many I mean thankfully we are I think in a sort of an awakening moment of destigmatization of many, many different parts of our society. But so many folks still live very, very wonderful lives after a diagnosis and some folks think it's immediate, it's all over and it's clearly a very traumatizing and difficult diagnosis to receive but it also doesn't mean everything stops and helping destigmatize people's expectations, other people's expectations of folks with Alzheimer's and dementia is really, really important. So thank you for doing that you know as we're breaking down these different walls and barriers in different ways. And one of the really good things about the topic you are sadly working on is that it doesn't matter what the person's politics are and there's a lot of issues that get very partisan very fast. You want to talk about taxes, partisanship. You want to talk about certain social services, partisanship. My wife is afflicted with Lyme disease. It's another one of those kinds of things where folks of all walks of life become afflicted and therefore every legislator is a possible supporter for you. And so don't push someone to the side thinking oh because their politics on some other topic may or may not agree with where you might be, you really can make an impact with every single legislator and we can get every single legislator across the partisan worlds in this highly partisan moment in time to be supportive of your efforts. So keep working on it. I know there was a bill that passed the Senate. I think it's in the House now if I'm not mistaken. And so the ball is rolling. We've got about six weeks left to get that ball across the finish line and I know Meg's been working really hard on that and your work today is going to be really helpful for that. So welcome to the Universalist State House and I look forward to seeing Darryl later on the Senate floor and I hope your day is really productive and effective. So thank you. All righty. Thank you so much to Lieutenant Governor Zuckerman for always encouraging us to be bold with our voices. And I don't know if he knows or if all of you know but one of the things we talk about, he was mentioning dementia and Alzheimer's being nonpartisan is that the red and blue of the Dems and Republicans come together as purple and that's why we proudly wear a purple out there as a nonpartisan color to represent that this does, as you said, touch people of all walks of life, all parts of the country, the state, the world. And unfortunately a lot of different ages, actually all ages if you consider the impact on children who have parents with dementia or grandchildren. So it was an appropriate comment to make at the end and I'm happy he highlighted it for us. I just want to make sure that you all have seen there's an agenda in front of you. We're going to have three PowerPoint presentations right now in the first part before we take a break to sort of lay the groundwork of some of the work that's been done and some of the work that's in progress right now. Then we'll take a break and after the break we're going to have a few advocates on a panel that are going to lead us into a group brainstorm about what we need, what we need as organizations, what we need as individuals, as care partners, as people living with the disease and what we can offer as advocates and organizations. So as the Lieutenant Governor said, there's a lot that you all do that we all do together that is really part of the solution because de-stigmatization and awareness raising is a huge piece of getting in front of this. And there's other things that people do as well, activities that they're planning in their communities, support they're giving, events they're holding at their churches. So the second half will be around brainstorming like what do we need and how can we come together as a group to do that? So I did make a few copies of the PowerPoints. I know some people, I made five copies. I know some people, especially Pamela, trained me well like those. I'm going to pass those out. All right, so Kirk, you can go to the next slide. I wanted to start just by introducing you all to the Alzheimer's staff. I'm not sure if you know all of us. As a matter of fact, when we were planning for this event, I had a meeting with advocates that sort of helped me think through like what kinds of things do people want and need in this level setting time. And one of the first things was please go over who's who and what they do. So the next few slides are going to talk about the people in our organization and also the partners that we work most closely with and sort of remind you of the acronyms because there's a lot of them. So first of all for our office, our executive director, Howard Goodrow, is in the back if you haven't met him before. You know me, I'm the policy director. We have Joe Cotto back by our program table. She does the program. So that means the education programs, the support groups out in the community, the awareness, that's what Joe is overseeing, facilitating, finding volunteers for, et cetera. Then we have two development managers, Jenna Johnson who's not here today. She oversees the Champlain Valley Walk and the Northeast Kingdom Walk as well as our Camelshump Challenge, which is a back country ski adventure that unfortunately did not happen this year because the snow did not cooperate. And Jasmine who's in the very back, Averbuck, she's our development director that focuses more on the central and southern part of the state with the Rutland Walk and the Upper Valley Walk and also the longest day and our reason to Hope Gallow, which you'll hear a little bit more about. And then we have Kirk sitting in the front up here and administrative associate does not do justice to what Kirk does because he does literally everything supporting our communications, all of our social media and helping all of us do our jobs and we're extraordinarily grateful for him. And Kirk came to us as an intern and was part of our very first advocacy day here in the role of an intern and then came to our organization. And I mention that because we have two interns in the room, Rebecca and Maddie. We have five interns working with our organization right now and one of the activities that they did to help us with the destigmatization and outreach and awareness was to have an event for three days last week in the Davis Center at the University of Vermont where they were engaging students in this. So you see flowers up above us of students that wrote messages about their own personal connections to dementia as they pass that table. So we really, really rely on the interns to help us with the capacity particularly around delivering programs, helping with the advocacy and leading and caregiver support groups. So thank you both and to all the interns who aren't here as well. Okay, the next slide we're going to go to our state partners. We have two big state partners. The first one is called DAIL, the Department of Disabilities, Aging and Independent Living. We have several representatives from DAIL here right now, the Acting Commissioner, Megan, Tierney Ward is here. Tiffany is also here whose name you see and you'll hear from her later. And you see Angela Smith-Jang who's the Director of the Adult Services Division and Jason Pilopoda who's the Director of the State Unit on Aging. So the way I kind of, this is like the oversimplification but DAIL is the place in the state of Vermont that provides the services that older Vermonters and caregivers of people with dementia and disabilities and other things need but for our purpose older Vermonters need. So they are the ones that help to run the programs and oversee the funding that comes in from the Older Americans Act and work with the adult day centers and understand what the transportation challenges are. They oversee the dementia respite grant. So they're really on the ground kind of post diagnosis looking at what we need in our landscape and how we can make sure that older Vermonters and, you know, this is state government so particularly those people of the lower income levels are not falling through the cracks and are getting what they need. So they're our partner on that side and our other partner is with the Department of Health and the two people we work most closely with there are Ronda Williams and Ed DeMa and you'll hear from Ed later and they actually, we work with them because they went after the bold grant, you hear me talking about bold, bold is building our largest dementia infrastructure. It's a national program that gives money to states and municipalities to help them build out the infrastructure, the capacity for this growing number of people with dementia. So those are the two people that run our bold funding that we get in Vermon, it comes from the CDC and they really focus on awareness, risk reduction, comorbidities and then the infrastructure in terms of looking at the healthcare system. So helping to lead the groups that are looking at how our healthcare providers trained, what kinds of programs do we have for primary care providers or social workers or other people that receive the training they need so that they can properly support people and move them through the system. So those are our two biggest partners. We work with a lot of other people because there's Medicaid and all kinds of other, this goes across all the different demographics and all the different silos of state government but these are the two you'll hear me talking about is our Dale and the Department of Health. And then we have some organizational partners. Probably the biggest organizational partner we work with are the area agencies on aging. There's five of those in the state of Vermont. That's like the first stop for anyone in Vermont who's over the age of 60 that needs anything. That's where you stop and they should be your resource center. Again, particularly focusing on people who are of lower income levels if you're really well to do and you get there they're going to say, yeah, there's all these programs but you don't qualify for them. But that's who we work with and that's something we'll talk about too is like what the qualifications are because it is challenging. But we work with the five area agencies on aging really closely. We have representatives from them here today. They have dementia care specialists there that are really working with families particularly with dementia and then they have their case managers and other people that are helping older homeowners with all kinds of issues, issues that people with dementia have and everybody has. Like how am I going to keep my home or I'm food insecure or I don't have transportation or all of those pieces and the area agencies on aging really are the conduit that then connect people out to other services like home health and hospice or the visiting nurses or senior meal programs, all of those kinds of things that happen in the community. The area agencies on aging and then one more slide. The other two that we work most closely with are the adult day centers. So there's 11 adult day programs in Vermont. There's a list on our program table in the back if you want to have those for your regions and we work closely with them. And then the dementia family caregiver center at the University of Vermont Medical Center is a strong partner of ours that we work with and they're really focusing more on the caregiver side of this with programs that can help build support and capacity for caregivers. And one of the reasons we're really pushing for early diagnosis and awareness is because that gives you the time to build the capacity, that gives somebody the time to build the skills that they need to care for their loved one with dementia if they decide that they want to keep that person in their home or in their community. And I think most importantly in a lot of what we're talking about on the national and the state level is really the recognition of the impact of caregiving, particularly dementia caregiving on the caregiver. So they aren't only talking to people about how to care for their loved one, they're talking to them about how to care for themselves, how to make sure that you don't end this experience and then you yourself are in a health crisis. So we really enjoy working with them and they're here and will participate with us today as well. Alrighty, so I just wanted to do a quick little overview of what we've done so far. As I mentioned, this is the third year that we're holding an Alzheimer's Advocacy Day with me here. That's how long I've been with the organization. In 2022, we had a small but mighty group of people that came here. We were working on a bill that passed. So I'm happy to say that we are really successful. We did a lot of testimony in the state house that year. Several people that are here testified multiple times and there had been a gap because of COVID, there had been a gap from lack of people in this position and we really started to build some awareness through those stories of where are the major disconnects and what came out really loudly that time was people just don't know where to go for anything. So two of the things that happened that year that were really exciting was we put into statute that instead of having a plan on Alzheimer's and healthy aging and then a plan on aging in Vermont, starting with the next plan on aging, which is next year, they will be integrated together. That means everyone that's looking at what are we trying to meet, what are our metrics, where are we going? They only have to look in one place. They don't have to say, oh, this is where we're going for older Vermonters and this is where we're going for older Vermonters with dementia. So streamlining that is a huge piece of starting to kind of bring all people together and have more of a level set. So that was really exciting and then we also had added to law the requirement for Dale and DOH to figure out how to create an easily accessible public education resource space and it literally says in person, print, online, we're working at that. It's not easy because there's so much going on. There's so many partners. People change all the time but we've made progress. We do have a spot online where there are a lot of materials now and I think a big piece of the new state dementia coordinators position is going to be to pick that up and figure out, are people using it and if they're not using it, why aren't they using it? So we had a very exciting first year in the state house and then you can go to the next one. Last year we were back again and we did a lot of testifying last year when they had the public budget hearings, 15 people actually testified about the need for a state dementia coordinator and how having someone help to coordinate the services would be beneficial for them and we were successful in getting that position added to the budget, added to base funding so we have a permanent state dementia services coordinator. That's Tiffany who you're going to meet in a minute. She started in the middle of February so she's very new in her role but that was a big win for us and I think it really is as she comes on board going to be central in coordinating what we're doing and where we're going. And then this year we have two priorities. We're halfway through the legislative session as the lieutenant governor said we have two priorities. One is to increase the dementia respite grant from $250,000 to $500,000. That's a grant that has not been increased since 2003 so I'm sure you can all think of something that costs something different in 2003 than it costs now. We had people testify again at the budget hearings for that. We worked very closely with the House Human Services Committee. They added it as a recommendation to be added to the appropriations. Unfortunately, none of the recommendations that they had for older Vermonters for the Dale budget were added to the appropriations budget as it's moving through the house right now. This is terrible for us but there's other pieces that are equally as bad including not even cost of living increases for a lot of the direct care workers and that's going to exacerbate the crisis we have of finding direct care workers. So this bill will now, with the budget, full budget, will now be moving to the Senate and we have another shot to try and make our case for why $250,000 would have an actual impact on costs to the state, on wellness for caregivers, on wellness for people with dementia. We believe about 100 more people could access the program. These are very small grants. They're not to pay caregivers. They're to give people respite or give them tools. So either use your funds as Betsy did to take a class on how to do caregiving or to be able to pay for your loved one to go to an adult day for a certain period of time so you can take a break or to go to a long-term care facility even for a week, for instance, if you need to go to a funeral or a graduation or a wedding. So we are advocating for that. When we take our break, there's a take action table in the back and you can add your name to the letter that says that you want this to continue. So we're asking the Senate Health and Welfare Committee and the Senate Appropriations Committee to please consider adding this, to please add this to the fiscal year 25 budget. And the second bill that we're working on is the numbers S302, as the Lieutenant Governor mentioned, it has fully passed the Senate and it's incorporating dementia risk into public health outreach campaigns. So this would educate providers on the importance of early diagnosis, on the importance of caregivers, on the importance of the annual Medicare visit as a way to start cognitive screening. It would also educate the public on risk factors, the importance of early diagnosis. Why, for instance, reducing your hypertension is good for your brain or being active is good for your brain. So we testified, some folks in the room here testified, we testified in the Senate Health and Welfare Committee and it passed that committee, it passed the full Senate and it's now in the House Human Services Committee and so there's also a letter over there asking the House Human Services Committee to please take this bill up and move it through their committee so it can pass this year. I do believe it's going to pass. The good thing is there's not an appropriation with that bill. It's also not a magic bullet. It doesn't do everything. It puts into practice that this is what should be done and lays the groundwork for us then and for our partners to go forward and integrate education a little bit more, a little bit more deeply into the work that's being done. So that's what's happening on the Alzheimer's Front in Montpelier and some of what we're going to be working on today and now I am really excited to introduce Tiffany Smith, the new State Dementia Services Coordinator and I'm going to pull up her slide deck and she's going to talk to you a little bit about what she's doing and what she's planning on doing in her role. Come on up. I said okay if I tilt this to the side a little bit so I can look and speak. I don't want to. Thank you everyone, thank you Alzheimer's Association for inviting me to speak and also thank you to our advocates and legislators for approving this position. Thank you to the Alzheimer's. The Governor's Commission on Alzheimer's Disease and Related Medshis for making this legislative priority for actually several years. I really appreciate it and I'm honored to be here and be the first person in this role. So coming into this role about two months ago I thought it would be important to sort of visualize what is a Dementia Service System. We certainly know there are programs available in the state through our Old Americans Act as Meg had mentioned but what does this look like when we think about how to improve and coordinate a system. And so we know that there are multiple efforts to take place on different levels across the state looking at societal level, improving culture and stigma, awareness and attitude towards Dementia, people living with Dementia and the challenges of their caregivers. Meg had mentioned those legislative goals and also successes so what happens at our policy level is also another part of this system, the federal, state and local policy regulations, what happens in legislation. I think what most of us are familiar with is what's happening at a community level. So what are those systems for delivery of services and supports, what's happening in home and community based organizations, what's available for those who are living independently and also what happens when someone needs to transition into higher levels of care and what's available. And then certainly at the individual and family level is a very important part of this system. You know, how do we best meet the needs and prioritize individuals who are living with Dementia and their caregivers and creating these social networks and making sure that there's opportunities for skill building, counseling, education and also looking at our workforce and what sort of training and supports are needed for those individuals. Next slide. So the primary goal that I identified for this position would to be develop an accessible and coordinated statewide system. Ultimately, you know, we want to improve and provide the supports to people living with Dementia across care settings and in community. We want to build partnerships that leverage public and private resources. Meg had mentioned that there's a lot of cogs in the wheel of ways to receive services, whether it's state or federally funded and then certainly other organizations with separate funding streams. And certainly looking for innovations that will ensure continued effective outcomes into the future. So looking evidence based programs and creative models, whether it's intergenerational care, care models for respite or faith based community respite. Next slide. So I've identified a few data driven areas of focus. So over the last few years, we've been really fortunate through our partners at Department of Health, Alzheimer's Association and other state agencies to be collecting a lot of data on the experiences of individuals living with Alzheimer's and their care partners. So it's really important that through this work, we look at ways to create easy access points to service and supports, implement effective methods for assessment and service planning for people living with Dementia and their family caregivers. Excuse me. To improve the delivery of information, education, training supports, referral and care coordination, like to promote greater adoption of person and family centered care across all care settings, making sure that the person and the caregiver are at the center of planning and decision making. Enhance and expand innovative respite options. We certainly know that workforce is an issue, but there are some other models nationally that have proven to be successful. And also improving programming for health promotion and disease prevention, evidence based offerings for individuals living independently with Dementia and also for their caregivers. Next slide. And so how does this work? Well, it's through partnership. Here I've identified some leads, organizations across the state who are directly involved in more of the direct service for individuals living with Alzheimer's. Meg mentioned many of these and certainly you'll notice that there's regional leads as far as UVM, Gifford Hospital Neurology Program, Memory Clinic in Bennington, and even 2-1-1 is sort of a statewide resource. But through this work I would like to also identify more partners and see who else we can get involved in sort of this larger system coordination. Next slide. So together in this collaborative effort to improve the service network and better serve individuals living with Dementia and their caregivers, I really hope that we will build a care and service system that will provide individuals with an opportunity to be fully informed of their health status and care needs, to access support options that give caregivers the relief that they need and to make the caregiving tasks more manageable, effective case management for individuals living with Dementia and the ability to make decisions about care transitions in coordination with confidence for their caregivers and overall an improved quality of life. I'd like to invite you all to reach out to me and let me know if you'd like to be a partner or where we think that this work could cross over into your organization and really help improve and coordinate our system. Thank you. Thank you so much, Tiffany. We're excited to work with you and just so everybody knows, Tiffany and I will be facilitating the next session after the break about like how we do this so there'll be a lot of times to hear your ideas and to build those connections. So that is happening. So now I'm going to invite Ed Dement up and he's going to talk about, so you remember he was on the Vermont Department of Health side now. He's going to talk about the bold program and the infrastructure that we have been building and are building to look at the work from that side. So come on up, Ed and I will pull your slide deck up. Good morning, everybody. Okay, so as Meg said, I'm here today to of course lend my support to Alzheimer's Advocacy but also to cover a little bit about what the Department of Health is doing in the Alzheimer's Disease and Healthy Aging Program, which is a grand total of two staff, so not the largest division in the Department of Health. I thought I'd start though because we are here for Advocacy to start with a little story because I feel like stories are much more impactful than numeric data, no matter how compelling that numeric data may seem on paper. So I won't take too long on the story, I promise. It's not part of the slideshow. So my dad and his sister have both passed away from Alzheimer's Disease. His sister was diagnosed at 59 with early onset, passed away at 67 and my dad was diagnosed much later, the more typical scenario and gave up driving on his own which is a very rare occurrence, which was lovely. So there were no battles about that. This was all during COVID and he was at an adult daycare and of course the daycare closed because of the pandemic and you could imagine the decline afterward. Social engagement was essentially nil. I mean, I was with him all the time, my partner was with him, but of course we were all isolating. He sadly passed away in toward the beginning of when the world was opening up again after seven weeks in long-term care at a time when I was not able to visit him. So yeah. Oh yeah, sure. Sure, sure, sure. I'm too tall, maybe I should. I need to, I can sit on the stage. Okay, that's great. Is this better? Okay, great. I'm sorry. So yeah, I just wanted to make the connection that, what's that? Basically, I just wanted to tell the story so that you know that this is the reason I'm in this role. I switched jobs at the Department of Health when my dad passed because I felt I needed to do this work. So I feel you. So I'm going to start with a little bit of a look at bold. And we throw that acronym around all the time. Meg defined it for you. Building our largest dementia infrastructure. They left out the I, not sure why. Boldy I guess was not as a compelling title. So basically the bold infrastructure for Alzheimer's Act passed Congress in very late 2018. In fact, I think on New Year's Eve. So truly very late. And that actually granted money among other things to the CDC to begin to fund states to develop their infrastructure to respond to this growing public health crisis of Alzheimer's disease. The bold activities are designed to create a uniform national public health infrastructure. Now we say that some states are, have a very well developed infrastructure. Some are just beginning to develop their infrastructure. So of the 50 states, there's a continuum of where they're at. Those are the four pillars of bold. I like to call them pillars or focus areas. So that's where our attention is focused as we work through the bold grant. The initial grant, which happened in 2020 when the Vermont Department of Health was in tier one response to COVID. So you can imagine that first year, not a lot of things got done on the bold grant. I didn't get hired until 2021. The focus of that grant was to increase coordination in the state and collaboration, establish a state dementia coalition, create a state plan to respond to dementia from a public health perspective. And we did that. We were very successful. We got our action plan published in October of 2022. After our first year, we had 114 activities listed in that plan. We had achieved and or started 64 of them after the first year. And I also just want to point out that sometimes public health, focusing on populations that trickle down, isn't always felt by the individual who's experiencing, you know, being a caregiver or a diagnosis. But trust me, the work is happening. And that action plan is something we're all very proud of. Meg was instrumental. And I want to say as I continue that, as Meg said, our two very principal partners are Dale, particularly the Unit on Aging and the Alzheimer's Association. But there are so many others. I'm not going to list them. Hey, Rachel. I'm not going to list them. But we appreciate all that work. And as we go through the slide show, I will identify other partners as well. And if I leave anybody out, please note that there's a multitude of folks working on this. Can I have the next slide? Great. OK. So one of the work groups that we have is called the Hub and Spoke Work Group, which is composed of folks from aging services, health systems, physicians, advanced practice nurses, and other partners as well. The other partners is also very broad, right? So this group develops educational resources for primary care providers, particularly. And the end game of the work is to kind of take the pressure off the memory programs at UVM, at Dartmouth, and in Bennington so that primary care has more of a capacity to detect, diagnose, and help manage dementias in the primary care setting, which is also helpful in Vermont, because we're a very rural state. And sometimes it takes a really long time for people from the town that they live in to the specialty care. And some examples of the educational initiatives that happened as a result of the work of the Hub and Spoke are Project ECHOs, which is an evidence-based program out of the University of New Mexico. And we devised one here in Vermont with the University of Vermont School of Nursing. And AHEC, which is the administrator of the particular Project ECHO. And this educates primary care providers on a multitude of topics about dementia. They review case studies. It's all virtual. We've been fortunate that approximately 250 members of primary care teams so far since the first Project ECHO launched in 2021. 250 primary care team members have taken the course and completed it. So that expansion of the capacity of primary care is happening, slowly, but happening. Another really exciting development is the establishment of the Vermont Alzheimer's and dementia care project, which just began accepting patients, I think a month or so ago. And it's based on the UCLA dementia care model. And it can take 200 dementia patients in Vermont and help to connect them to services. They have a, I forget what it's called, an Alzheimer's assistant? I'm forgetting the title. It doesn't matter. A person who liaises with the folks who are in the program connects them to services, makes sure they're doing what they need to do to allay and hopefully help treat their disease. So that is just in a nutshell a little bit about what happens in the hub and spoke realm. Next slide, please. So this next slide is a little bit of an exception because a lot of this work happens internally at VDH because VDH has a lot of programs around chronic disease that are funded by the CDC, the Center for Disease Control. So we meet often with our other CDC funded programs. Integration is incredibly important. And one in four Vermonters are 60 years and older, and by 2030 that ratio is expected to increase to one in three. And we know that aging increases our risk for many chronic diseases, heart disease, diabetes, arthritis, cancer, and of course Alzheimer's disease. So working to prevent chronic disease across the lifespan is an important component of this work, and particularly in midlife, where a lot of the literature shows that control, effective control of chronic diseases in midlife and or prevention is the best way to allay the development of dementia. Just wanted to review a little bit about primary prevention and secondary prevention because we throw those terms around too. Primary prevention basically aims at preventing the disease condition from ever happening. So it's educating people so that they can maybe make some lifestyle changes, eat healthier, move more, and prevent the development of disease. Secondary prevention aims to reduce the impact of the disease once it's been diagnosed. So stay healthier even though you have this diagnosis and how do you do that by controlling your blood sugar, taking your blood pressure medications, whatever the scenario is. So our program has created multiple media campaigns, mostly social media, with the cardiovascular disease folks and with the diabetes folks, and we've gotten a lot of this messaging out there, ferrying people to My Healthy Vermont, which is a website that contains evidence-based programs where people can log in, join up for free, teaches them how to manage their diabetes better in a group setting, a virtual group setting, I think mostly now, but nonetheless there's that support of others going through the same type of situation. Okay, we're good, next slide. Thank you. Okay, so another way that bold funds have been helpful to Vermont is to enable us to bolster our data collection because one of the things that I think nationally, but certainly on a state-by-state basis, some states have been very, very fortunate to collect a lot of data. Vermont is, we're making our way there. And one of the data products that we produce, which I'm particularly proud of, is our caregiver, caregiving of Vermont, a caregiver profile data brief, basically. So last summer we interviewed four folks who were willing to share their stories as caregivers with us, and we paired those stories with data from the BRFSS, and another thing we throw around a lot, the Behavioral Risk Factor Surveillance System. It's an annual telephone survey of adult remoders. It happens every year, and it basically tracks health-related risk behaviors, chronic health conditions, and use of supportive services. And that's a lot of our data comes from that. There are two modules that can be incorporated into the BRFSS, and this is where the bold funding comes in. If we're lucky and there's space on the survey, we will pay for a caregiving module, which will ask people questions about their experience as caregiving, and then there's also a module on subjective cognitive decline, which basically asks people, do they feel that they are having cognitive issues? It's a self-perception kind of measure, but it's important, and it's often an indicator of development of mild cognitive impairment later, and ultimately, perhaps, dementia. So this data brief, though, has very compelling stories of caregivers, lots of struggle. You'll see it if you decide to read it, and you can log on to our website and access it there, but also some joys, and a lot of attention being brought to bear on what we actually need to do for caregivers, and so it's a vital, I think, a vital resource, and it's something that hadn't existed before. So please take a look if you're surfing the net one day. Next slide. Okay, and the last body of work we'll look at today just to wrap up is dementia-friendly Vermont, and we know that a vast majority of older Vermonters, 91%, yeah, 91%, want to stay in their homes and in the communities that they love. We also know that over 20% of Vermont adults are 65 and older, and the number is rising, as we saw before. So since age is the principal risk factor for Alzheimer's disease and dementia development, moving toward a dementia-friendly communities model seems a particularly strong public health imperative. As a state, we have yet to commit to being dementia-friendly, but individual communities can opt in. And our offices of local health, you may know that there are district offices, there are 12 district offices of the Department of Health located across the state, and we have staff in those offices that have very, very close relationships with municipal governments, with worksites, because they do worksite wellness programs, and also with other community-based organizations. So since dementia-friendly Vermont rolls out in a very sector-specific way, those folks in the local health offices are at the ready to begin to roll this out in other towns if towns are showing interest. So they'll be doing a little bit of a dog and pony show soon to kind of get the word out locally, and hopefully more towns will take advantage. Currently, Middlebury, I believe, is the only town that has opted in, and they are making some great progress. And that picture on the lower right there is basically, if you look on our website, it's actually an interactive map, we'll say. And if you click on the cloud, as I said, dementia-friendly Vermont is a sector-specific way of approaching being a dementia-friendly community. So you can click on the banking and financial cloud, and it'll say, okay, if you're a bank or a financial institution, here's how you can be more dementia-friendly. If you're a library, here's how you can. So I encourage you to look at that as well. And there's also a dementia-friendly America website, which has amazing resources. Ours is kind of the tip of the iceberg, and that was produced in partnership with lots of folks again, but I just want to call out particularly Tiffany from Dale and also the University of Vermont Center on Aging. All right. And with that, next slide, there we go. Please contact me anytime. There's a lot more going on than what we talked about in the last 12 or 15 minutes. And if you want clarification on anything, always happy, and always happy to just chat as well. Yeah. Okay. Great. Thanks for your time. So you all can see now that I get to work with some amazing people here in the state of Vermont, and there are a lot of us doing this work. It is a heavy lift, but together we are really making progress, and we're going to talk more about that after. So now it's break time. We have about 10 to 12 minutes for break. The bathrooms again, food. I do want to point out that at the chapter table in the back, we have a resource guide that an intern helped us put together last year. It's a pretty extensive booklet that has high-level resources for someone who thinks that they are experiencing cognitive decline or has had a diagnosis and has in it all. It's meant to be a printed resource. We do have it online, but it's meant to be a one piece that someone could take that would connect them to Dale, to the area agencies on aging, to Alzheimer's, to some of the information around brain health, et cetera. So please stop by our chapter table and grab that and talk with the staff if you want. And then also I mentioned the take action letters. Those are at the table with Jasmine and Maddie back here. And I would love for people to sign those letters. There's instructions back there, but you write your name, print your name, and you can write a compelling factor too if you want. I will be delivering those letters to the chairs of those committees tomorrow probably. But I just thought it's a different way for them to visualize us being here since we aren't able to be in all the committees that that would be an important thing to do. And then we'll come back after the break and that will be hearing from advocates and the group brainstorm on sort of what we want to do. And then I'll explain how we're going to spend the second part of the day in the state house. So take a break, try and meet somebody new if you can, and we will be back in about 10 or 15 minutes. Thank you. Alrighty everybody. So we're going to transition. And I really, I have to say I loved how y'all broke and mingled. Like it reminded me that we do have something in common here and we are a family and it's a safe space. And I loved that because I've been in so many groups where you break and everybody does their own little thing. So that was beautiful to see and we will have another bigger break. Actually two more breaks today for that to continue and for people to continue to sign the take action cards. But we're going to switch now. I wanted to give an opportunity for some of the advocates and I know like basically every person in this room is an advocate and has been out advocating and doing activities and we'll bring those up in the shares. But I did want to give an opportunity for three advocates that we've been working with this year to share a little bit about the different things that they do and I really picked them because they're going to talk about three very different things to start to paint the picture of how huge the range of options we have is when we're talking about getting involved, trying to advance policy, trying to destigmatize this disease, trying to build infrastructure. So we are going to start with Darryl Rudy from St. Johnsbury and he's going to take a couple minutes to share some of the things he's participated in this year. No, that's good. Am I okay here? You hear me? So I like to introduce myself as Darryl Rudy, just an old Ukrainian trying to make it through today. And I have Alzheimer's. I was diagnosed four years ago. And the things that I want to talk about are destigmatizing is the first thing. And I'm not a shy guy. I come from a theater background and I love to talk so she's going to have to get the hook to get me off of here. And it's really important. I'm not shy about sharing anything. I have an amazing partner back there, Barbara. And we just share it and talk to people whenever we can. So it's very important to destigmatize. The second thing is raising awareness. I think as the previous gentleman spoke, you know, I happen to be 80 years old and in a few years there's going to be the aging population of people 60 and over. And that's going to increase more and more the dimension Alzheimer's that we're working with in this country. So we need to be aware of that. And the best thing I can say while I'm up here and I give all the credit to Barbara, there's this thing we call denial. And denial is not a river in Egypt. Denial is when you don't admit something might be there and you should find out about it. I wasn't that aware. And Barbara said, come on, we're going to go see, get the test. She wrote me in, drove me over. And sure enough, it came out a positive. And I would not have really recognized it. So why am I saying this early intervention is so, so important? And thanks to Barbara, it worked for us and for me. And connect to resources, connect to resources, connect to resources. Barbara and I have, I mean, she's got a laundry list of resources. I've been fortunate enough to really go through numerous resources that help Barbara and me. So that's another very key, key ingredient. And again, you know, if there's ever anybody that wants to be an advocate for Alzheimer's, I'm one. And everybody in this room obviously is as well. So we, Barbara and I just really are about advocacy and going out. We've been to Washington, D.C. We've been to Boston. We've been to, I don't know how many places. We just did an Alzheimer's talk at a local food place where people who don't eat a lot are able to get food in Lindenville. And so I wanted to share that. And by the wonderful creativity and future seeing, we're part of a video that came out through the Alzheimer's Association and the two people we worked with making that video who were the people who did the shooting. And we become close friends with them. That's how wonderful it's been. So if there's an opportunity or we can talk with you to get this video and look at it or pass it around, that would be a wonderful gift for the Alzheimer's Association, a gift for people who have Alzheimer's and a gift for the people who are seeing it. So highly, highly, highly, I would recommend that. And what else do I have to say here? Yeah, and we already did the one in Lindenville, Barbara and I with a group of people. So that's my story. And I got to say partly Barbara's story as well. And what a lucky man I am. Thank you. So Daryl mentioned the video and Ed put some important links around dementia-friendly communities. I just want you all to know that I will send an email to everyone that registered to your email address that will have the links to all of these things you're hearing about so you can dive a little further into them. And there were three videos that we produced. They're on our YouTube page. Daryl's is called Embracing Alzheimer's. So he is very bold. And this afternoon we will all be on the House floor where Michael will be giving the devotional. But Daryl will be on the Senate floor sharing a Buddhist prayer as part of the Senate devotional and part of Advocacy Day today. So we won't be seeing that because we'll be in the opposite chamber. But I did want to mention to you that that's how vocal and how brave and how open he is about the disease and about the fact that it's just a disease and he's still who he is. So thank you so much Daryl and Barb for all that you're doing for us. Yeah. And next I'm going to invite Betsy from Rutland up to share a little bit about what she's been doing. Perfect. Can you hear me? Second? Okay. So thank you all for being here. Part of the, unlike Daryl, part of the being an advocate for me that is the hardest is standing up in front of people. It is not my comfort zone. It has never been my comfort zone. But it always was my mom's comfort zone. And she's been advocating for things all of her life. So when she got Alzheimer's, of course that's what she wanted to do. So I learned how to go and talk to people in Washington DC, talk to people in Montpelier, talk to our neighbors, talk to her friends. And I'm very, very blessed that she has been so open to tell anybody and anybody that will listen to her that she has Alzheimer's. So what I'm trying to say is you can go the big, the big route and the Alzheimer's Association is amazingly helpful and will get you through, even somebody like me that doesn't like to do public speaking, they will help you and it really is very empowering. But you can also do a lot of little things. I wear the Alzheimer's bracelet every single day and it's amazing how many people, how many conversations I've had in a coffee shop. I wear the Walk to End Alzheimer's T-shirt when I'm working out, how many people have come up to me and said just something, I hear a lot about different people experiences that way and it's a way to share. So my encouragement to all of you is to find new ways and how do you keep talking about it and how do you keep people realizing that it's not something that you can catch. We had one of the people that was living with my mom that wouldn't sit next to her because she was afraid that she was going to catch Alzheimer's. That's not cool. We have a right for everybody to help people understand that this is a tough disease to have, it is a chronic disease and together we can find an end to it and I encourage you to look at all the different little things that you can do as well. Thank you so much Betsy and Jenny for all that you do and I'm going to invite John Hartford up to talk to us a little bit about the activities he's been participating in this year. So yeah, John Bouton, I am from Hartford, White River Junction. There's an adjacent town, Heartland which is why we kind of get confused. Who knows which one is which. Anyway, good morning. I want to tell you a little bit about how I became engaged. My wife sort of towards the beginning of the pandemic and actually before the beginning of the pandemic had felt there was something wrong. That was also sort of coinciding with the time that we were both retiring. I'm 73 now, so we're looking back five or so years, five, six, seven years. And quite frankly, for us that was a tough time. We had both had our own careers doing our own thing and then to try to remesh our relationship or relish a deeper relationship and figure out what we wanted to do within the next 35 years was challenging. On top of that, Judy had behaviors that were just sort of irritating me, quite frankly. One of the things that happened is she was a quilter. She was an amazing artist, an amazing quilter, a great teacher of reading and elementary schools, promoter of the arts. And so one of the things that happened was that every time she would go somewhere to do a quilting class or something, even though she had this long big wall full of cubby holes, full of fabric, she would always come back with more. She had a very, very nice sewing machine. I mean a really nice one. And she came back from another event with another one because it was like $200 off or something like that, I don't know. But it was behaviors like that that were sort of kind of normal for her but just a little bit further on the outside. Yeah, no, it was just... So those sorts of things I just didn't pick up on, really. I mean our relationship was quite... frankly it was sort of spiraling downhill because of this and I didn't really realize what was going on. One of the things that happened was that she was interested in... she felt that something was wrong and had gotten a referral from a PCP and we always took care of her own health needs. And I was pretty surprised and quite frankly pissed off when the time came for her Zoom meeting and she was always very prompt and she didn't attend it. And I figured out later she didn't know how to run the Zoom. She'd forgotten how to do that even though she'd been very capable before. Had another referral that I went to and that for me was a game changer sort of a moment. As she was sort of going through those various tests the three words and all of those sorts of things it became really apparent that something was really wrong and so instantly my attitude went from one of oh Judy, you're just trying to piss me off I don't like this, this is not fun to oh, you can't help it. We're on a different path now. That was critical. And that was one of the stories that I told at one of the times that I was asked that Meg asked if I'd be willing to testify before one of the Senate committees and it was about the issue of early detection. If Judy had been detected earlier we could have done more. We could have adjusted more. We could have had a better relationship earlier on. So really pretty critical. Some of the other things that... See now I've got to admit I'm kind of under an overprepare I've got like six pages of text written here. I've got to get the hook out, you don't get six pages. I know I don't get six pages. Let me just grab this. Okay great. So I guess I also want to say I want to give a kind of a shout out to Dartmouth-Hitchcock. We live in White River Junction so Dartmouth-Hitchcock Medical Center is like seven miles away from us. As we're in Vermont I think we oftentimes think of UVM and the medical center there as being key piece, well it is. And there's something in Bennington as well but we have over on the east coast of Vermont another facility that's out of state but was a tremendous resource for us. They have an aging resource center. I had weekly or bi-weekly Zoom support groups going on that I was part of that was really essential in me figuring out with other people and the facilitator how to deal with different changes and what to expect as things were going along. Really important. And that's one of the reasons that I think it's also very important for us to have the statewide coordinator so we can pull these pieces together. I know that we had like, there were six or seven different opportunities of resources and trying to sort them out was sort of a challenge. We had that main one and that was good for us. Another thing that I want to say is that from my experience I rely on Judy's experiences. I bring her with me. She died last September. This is one of her many very colorful scarves but now that she's gone I really feel a commitment I've always felt a commitment to do public service but now really feel a commitment to make some of the good things out of the bad that happened. So sharing my experiences sharing sort of personal details that I would never really reveal in a kind of casual conversation but if there's a point to be made that's more important than then kind of pointing out that I was kind of a jerk for not recognizing that Judy was having troubles. I will be going down to Washington D.C. in another week and a half. My grandson who was turning 17 will be going down with me and will be doing some work down there. We're going to miss the eclipse but this should be a great experience great learning experience for me as well for him. So thank you. Thank you John and Betsy and Daryl for shining a light on Alzheimer's. So hopefully first of all thank you to Alicia for the idea. I know she's sitting back there but you all should have received a box that has a little light with our 800 number which we are always happy to take calls at if you are in trouble if your family or friend are in trouble or if you just have a question. I know there's more people than seats here if you did not get one of these we have a box with extra ones up here and we would love to have you take one of these home because all of you are shining lights on this disease and on the need to kind of come out of the darkness and really address Alzheimer's and all other dementias in our state. So thank you for the work that all of you are doing and the work that all of you are doing and I'm now going to invite Tiffany up and we're going to facilitate the brainstorm around what we need and what we can offer and as these folks are moving out please don't trip I will just set it up a little bit to say we're going to start Tiffany's going to facilitate the first part and we're going to start the ideas to look at the role of advocates the way that we people on the ground people in this room and out of this room can help destigmatize dementia build infrastructure and advance policy and part of that starts with knowing what is needed so if you're an organization here I encourage you to think of what do you need do you need volunteers do you need funding do you need a place to hold your meeting do you need drivers if you're a person living with the disease or caring for someone or living with someone with the disease I encourage you to think about what do we need in order to live a full life here in Vermont and I'll be taking notes I'm going to do that for about 15 minutes I know we could do this for like the entire day but we're going to do it for about 15 minutes and then we're going to switch to what we can offer like how can we as organizations and groups start to do that networking to meet those needs so Tiffany you're going to drive here oh and Rebecca is going to be in the middle here with the mic so if you want to speak please raise your hand she'll bring the mic to you so it gets caught on the on the video that we're making thank you to Orca Media for videoing this event this will be available on your local public access station you can work with me to figure out how to get it requested but this is also a huge way to share what we're doing so raise your hand if you want to speak please say your name and where you're from when you speak so we can start to network a little bit that way and try to make your points as short as possible so we can get as many ideas in a short a period of time as possible thank you alright is there anyone who has something that immediately comes to mind when you're thinking of what you as an individual or your organization needs in community whether it's for the people that you serve or an experience that you've had as somebody living with dementia or a caregiver who would like to start hi I'm Pamela Smith I have dementia and I'm the primary caregiver to my mother who has more advanced dementia what we really need is a family case manager or social worker and it's the same person every time and it doesn't just happen because some emergency has shown up I think for us the biggest challenges are our executive function starts going early and that makes doing all kinds of things really hard and I think it would cut down on a lot of freakouts I think it makes people feel more comfortable with with mom living at home so anyway a single contact that helps our family with whatever stuff shows up and mostly it will be around tasks that require executive function hi I'm so sorry it's still working it's still working well now that everybody's away my name is Sherry and my husband has late stage Alzheimer's he was diagnosed 10 years ago he's done extremely well up until the last year a year ago you wouldn't have known he had Alzheimer's it was amazing we caught it in the early stage and there's certain medicines out there that they give to kind of delay the process which has been wonderful so he's been very very functional and a lot of our friends have had difficulty understanding that he really does have Alzheimer's what I have found as the main caregiver and really the only caregiver we have a daughter and a son my daughter is in North Carolina and our son is here with a very busy business so it really is me and what I'm finding is I consider myself a fairly intelligent person but I am not only overwhelmed with my husband's issues but I also am overwhelmed with resources and that there's not as you said one direct person that can guide me through this process it is just overwhelming and I go to bed at night and I lie awake just trying to sort things out in my head and I've always been very good at this and I just I don't know where to turn I have a wonderful gal at aging well and Emily is amazing but she's only mine for maybe a day a week or a couple of hours a week so I agree completely with what you're saying and I don't have Alzheimer's yet but I've been feeling like I'm not in control anymore so that's where I'm at thank you thank you creating care navigation systems and training providers that help with that care navigator and the importance of single care navigators how we get there is a big question but this is definitely a topic that is you are not alone this is the number one thing that we're still talking about is the case manager the care navigator and that's one of the things that's being really tested out in the system that Ed talked about with the UCLA model that's taking place up at the UVM memory center right now is really testing out what kind of navigation is needed what do we need to know what do we need to connect them to do we have what we need to connect them to so thank you for sharing that go ahead I'm Greg Lother I have vascular dementia I've had it for over 10 years and I try to get people to understand that and it's a great t-shirt over here I'm still me even though I have problems we do have a support group that we belong with and what I was looking for is for us to find spaces to hold our meetings that's been our problem to find a place that is willing to let us have a monthly meeting so that we can get more people involved in working together to try to understand how to deal with this disease Hi my name is Aaron Clark and I'm working on a project for intergenerational care in Central Vermont but what I had to say kind of spoke to what Ed had touched on about training primary care and when I hear about potential programs for for bringing funds and relying on resources a lot of times it seems to come back to the primary care providers like oh well here's a way for us to get these resources out we'll go to primary care and although I don't work in primary care I work in home health primary care is so overwhelmed right now I mean home health is overwhelmed but getting anything out of primary care even a call back on patients is incredibly difficult so when I hear about you know like you could do this and deliver it through primary care I think that has to be thought of along with how do we expand the capacity of primary care because as it exists right now it can do it barely does what it needs to do much less anything more Hi I just wanted to piggyback off of that thought and maybe add ways to sorry would you say Meg? Oh I'm Rachel hi everyone I'm Rachel Wiley I currently live in South Burlington very new to Vermont so looking forward to learning more about the community from all of you but also thinking about you know if there are potential funding sources to incorporate other health care professionals in primary care so I'm an occupational therapist there's a lot of talk in the occupational therapy world about integrating OT in primary care offices to try to support them with you know some of these cases like individuals living with dementia so if we could find funding sources to support that that could be an avenue to explore. Good morning I'm Carol Lothrop the external brain to this man right here for 53 years I'm we have a support group in harmony which different members of our group are at different stages but recently we've had several that are going to memory care centers and I guess the advocacy that I am about right now is the cost of this and Sherry right here to my left dear friend of mine her husband is in the Mansfield house in Essex at Maple Ridge excuse me at $14,000 a month one of our other dear members of the support group is out to Birchwood at $13,000 a month and I just think this isn't it's just uncomfortable I just cannot imagine anybody in the state of Vermont unless you are a millionaire and unless you have the resources and unless you have long care insurance that any average person has to sell their home you know dumb down everything they have to get Medicaid to get into a place that is Medicaid Medicare approved this just does not seem real and it is happening in the state of Vermont there's just so few places that will take Medicare Medicaid everything else is insurance paid or private paid whatever that you have to be able to pay for those that amount of money I just think we need to truly address that I want to add to Carol this disease drives us into poverty it certainly does thank you Carol because I wanted to bring that up at some point today as well but I do want to add to that is that the cost is just astronomical and there's no resolution it's the places that are not expensive and when I say not expensive I'm talking maybe $6,000 a month are not a place that you necessarily want to place your loved one I understand that they're understaffed and there's not enough people that have been trained to manage to run a facility like this my husband went to Maple Ridge and this has been about six weeks now it's a beautiful facility however the food is basically something that your middle school kids probably getting at school it's awful I've sat in on several meals there are organized activities but yet there aren't my husband is a wanderer so he had to be in a lockdown facility and I've basically been told when my money runs out I said well what do I do and she said well you're out the door and so you know there's a movie I think I've told Carol about this movie it's called The Leisure Seekers and Helen Mirren and Donald Sutherland and I think it's worth watching to see what people like myself have to contemplate thank you hi thank you Joanne Aaron House and I'm here with a crew from Senior Solutions Area Agency on Aging for Southeastern Vermont happy to be here I'm learning a lot from everybody it's echoing a lot of our concerns from my perspective right now my role is as the manager of all of our volunteer programs and due to a lot of the issues that you all are expressing I'm finding that the load of helping to take care of people with dementia more and more and more is falling onto volunteers who are ill-prepared to go into people's homes and take over the care of someone who is suffering from Alzheimer's Parkinson's or other forms of dementia we are very excited because Joe Cotto is coming down to Ludlow the 29th of April to do an in-person training to help people who want to facilitate memory cafes this is a service that we offer so far Black River Good Neighbors Senior Salute has one in Ludlow Senior Solutions now has one in three communities that we serve for two hours a month it offers a free safe place for people to come with their loved one who will be cared for watched, you know, entertained so that these caregivers have a short moment in time to support each other learn about resources find out they're not alone and it's so needed but it's scratching the surface they're doing the work that isn't being done because there are not enough in-home caregivers there are not enough facilities there are not enough day adult service places that are affordable we have people that come to the memory cafe who like we were just hearing if they want respite if they want to find a day facility that's phenomenal unless they have Medicaid so we're going to be meeting with one of the day facilities on Friday which is tomorrow and we're going to try to work out some kind of a plan where we can help each other but the state I am just begging that the state do something to support the volunteer programs these are people who are retired most of them and are going into the homes that are so necessary and I worry that they are being expected to do the unconscionable and the impossible thank you very much thank you Joanne and I'd like to acknowledge that we do have other AAA representatives here our older Americans act work flows through these AAAs our older American Act services are dementia services that is a priority population is there anyone here just as you're thinking from our AAAs that would like to share what they need sort of from their role in providing those services but week after this one go ahead hi I'm Alicia Fleming and I'm from Colchester originally from St. Johnsbury and I wanted to talk a little bit about the destigmatizing of the disease and wrapping ourselves around early education in K-12 and what that looks like so we can present a model that is truly I'm still me I support what you're saying I look at as I have a new normal what was normal for me before is not now but looking at early detection is an interesting process I was diagnosed with pseudo-demented depression that and I knew it wasn't right I knew I had something more than that and they started telling me it was all in my head it just as we try to do something early but I'm not sure the medical facilities have caught up to what's going on mainly because it took a long time for me to get a diagnosis that I have vascular dementia due to open heart surgery and they shouldn't have happened and they just didn't seem to catch that so I went through a lot of process to find that out I had to go down a Dartmouth to get a final diagnosis because here they had slotted me as being pseudo-demented depression so we need to have people understand what this is about and also the fact that what she has is it's still me is what I find is when people I tell people I have that they kind of say to me well that's it what does he know he can't do anything because he has dementia yet to some extent I have to change what I do to adapt to my new normal but I can still do what I can do with the help of my wife and others it it makes a difference but I don't think people understand that we're still the same people but we have to do things differently because of our disease I think that we pigeonhole everything every diagnosis every disease and we just when I have been for a long time a very big advocate for Greg and I say well Greg has dementia and immediately people think nursing home no there's not nursing home yet that's not where we're at we're going to keep pushing the envelope we're going to keep exercising we're going to keep doing all the things we need to do to keep that brain vital and happy and healthy and I think people need to stigma stop talking and pigeon holding everybody thank you Darrell you'd like to come forward again I'd like to hear some more from our service providers thank you Karen you know that's okay and we'll end with you guys after Darrell this is quasi off topic but my curiosity really popped up after everybody was talking where relative to the rest of the states in America does Vermont stand relative to what we're able to do what we do do I know that's a difficult question to answer but it's one that just came to me and I think it's just significant in the way of seeing where you know I'm always aware of how much I love living in Vermont and what a progressive state it is and I want to be sure it still is you might say anyway that's just something I wanted to add Moira and from senior solutions I manage the rest one of the respite grants the dementia respite grant and I think one of the problems caregivers has is finding a respite caregiver one they trust one they'll allow in their home that is where the grant stops often they want it they filled out all the paperwork now they need to find someone and they cannot find anybody yeah thank my name is Valerie Lewis I live here in Montpelier I'm not a provider I'm a caregiver of a mom with Alzheimer's and I was late today because we're in the middle of this crisis with our family I'd like to address a couple of things that were said one of the things that would have helped my mom early on would have been adult daycare there's none here in central Vermont and one of the thoughts that I had about that issue is that we have a whole network of senior centers around the state if we could pair up with senior centers who have teachers get some training obviously there's more funding that will be needed but we've already got the network we've already got the facilities and that would help some of the folks who are not quite as far down the road with the progression of the disease to address the issue of the cost of facilities we were accepted at two facilities and we had the rug pulled out from under us at the last minute on one of them and today we're removing all my mother's belongings from a facility in Shelburne because she was taken to the hospital after being there for two days they will not take her back and so right now she has no place to go we've been caring for her at home for a year and we are fried we are just worn out we could not get resources we couldn't get help one of the problems with these facilities that I think the state can address is that they advertise their memory care and they will tell you that they will take everyone throughout the full range of the progression of the disease and then when someone exhibits behavioral issues they kick them out or say they won't take them back and that is you know when you've paid thousands of dollars and I just wrote a check for over 23,000 dollars two weeks ago and my mom was there for two days so there is a cost to doing things there is you also have to look at the cost of not doing things and the cost of this disease to the individuals the families, the community is unconscionable and I just sent a message on to Bernie Sanders to say that this is a national embarrassment and outrage and we really need to all advocate very hard for this because five years from now the rest of the baby boomers are coming along and are going to need help and it's just not there and to those of you service providers thank you for what you do it's very difficult and there just aren't enough of you and you're not probably paid anywhere near what your work is worth thank you Hi I'm Karen Dresche from the Northeast Kingdom Council on Aging in St. John'sbury in Newport like Moira I would love a pot of trained vetted individuals to go into homes and work my caregivers would love the ability to get online and see a registry of vetted caregivers in their area who are trained in dementia care I would love to see our primary care physicians care coordinators in each care givers office there is a care coordinator I would like to see them trained in dementia care the availability of services and to stop siloing people and to adjust their their services looking at people in a person centered approach as to oh that's my client no that's your client and that's her husband and that's his wife and that's his dad and her mom and if we could start looking at people in a more person centered approach as to a more dollar bill approach it would be a beautiful world more understanding for communities big corporations Walmart Shaw's all of these places that it is mandatory that their people are trained in what does dementia look like I would love to see our law enforcement in emergency medical services trained in what does a dementia crisis versus an opioid crisis look like I would like to see triple A's opening up more services to people with younger onset dementia I would like to see I can do this all day long I would like to see more clinical training for congregations religious sex I would like to see more inclusivity with the LGBTQ plus community because there's a lot of shame what does veterans associated dementia look like as opposed to regular dementia what does a what I would like to see more research going into and funding going into what is dementia going to look like for somebody who does have an opioid and or addiction what does alcohol addiction do to the brain and cause of dementia I just you asked but I think a lot of what you just spoke to is possible through the administrative and the community I would like to see more community members as join me in the community I would like to see more community members you can join me and I would like to see more community members We can continue to brainstorm, and you also can always send a message to me. You have my email from this. Tiffany's email's available. I'll give it to you. Ed's email's available. We need to hear what you need. We need to hear this town's available. We need to hear, in this location, we need a space. We can meet some of these needs. The needs that are harder to meet are how we're gonna train people in primary care practices because as was said, they have capacity issues and they also have to know about all these other things. So there's a lot that we need and we know that and we appreciate this brainstorm on it. So what we're gonna switch to real quick and like people to just really, we're gonna kind of popcorn as fast as we can, like what are some of the things we can offer as advocates? And this is gonna transition into a brainstorm that continues today, and there's a poster back there. You see the sticky notes on your tables. If there's something you can offer, right? I can spread the word in my neighborhood, Meg Burlington. I can facilitate a support group, Meg Burlington, right? So what can people offer? So support groups I'm hearing. People can raise their hands or they can popcorn stuff out but what can we offer? Go ahead, break it. We have a support group in South Burlington. Anybody is welcome. It's called In Harmony. It's about 10 years old and we are willing to give that information. Anybody would love to come. We break up into separate groups, the group that has the disease and the group that is a support care person and we have two facilitators that both work in healthcare and we just balance our ideas back and forth in support for another. In Harmony. I'm Lori McKenna, Dementia Family Caregiver Center. One of the things that we've developed over the past two years has been a peer to peer mentoring program. We are matching new caregivers with caregivers with lived experience and we are happy to take this model to other parts of the state if you have any interest in starting this program in your agency. Hi, I'm Tracy Van Hoeven, Middlebury. My grandfather had Alzheimer's, my mother had Alzheimer's, was five years in the continuing care community. I work for LCB Senior Living in Middlebury. We also have a community in Shelburne and so I'm here if the family wants to talk about if her mom was in our community in Shelburne. So I was a family paying for care for five years for my mom and I know how expensive it is because I'm on the sales and marketing side. I also get a lot of people that come to us for support and luckily Middlebury is a dementia family community and so what's important I do wanna say but a plug in for more communities to do dementia friendly because we've created in Middlebury a whole network of support systems for everybody across as many levels as possible and Pam, you were at the last meeting we were there together at Eastview. I do wanna throw out that we also every month, third Wednesday of every month we offer a dementia support group. We work very closely with Middlebury Elder Services who has a Project Independence Daycare. We're part of their programming there. Excuse me, the other thing I wanna offer is we do have a program called Walk In Their Shoes and we actually offer this in terms of an education at adult senior centers and other places it may wanna partake where we actually simulate what it's like for people living with dementia and Alzheimer's so Meg has my contact information I'm happy to offer that program where we can okay but I understand what's going on very close to it. Hi, I'm Rachel and I'm happy to support with education and training for healthcare professionals and non-medical home care or professionals working in adult day programs, thanks. Yeah, John Bouton. I'm willing to once I can finally get kind of estate planning all figured out which is another hassle that I think really is important to have mentioned earlier perhaps because that comes in quite a shock if you haven't done estate planning. But once I get that done I'm happy to begin to work with you and perhaps form somewhere in the White River Junction area of peer-to-peer support system down there. So thank you, I'll make that commitment but I need to kind of wind down some other things first. So that's exactly what we're talking about about these yellow sticky notes, okay. When we leave today I want that flyer in the back that says we're all in this together, I can. Dot, dot, dot, it's not a commitment that tomorrow you're doing it. I want it to be covered with sticky notes of things that you as individuals can do with your name that I can read. So I can put that together, reach out to you or connect you or just remember so in six months I can say hey, you said you wanted to do this, do you still want to do it? That's what the sticky notes are for now at the next breaker this afternoon. Anything you think you can do or you can offer from what you've heard it can be everything from I can wear a bracelet and talk in my community. We have bracelets on the back table. I can distribute memory cafe information. I can start a memory cafe, that's where we're going. So let's hear one or two more things and then I'm gonna give a breakthrough. We'll take these last two and then we'll talk about what's gonna happen this afternoon. Hi, the Vermont Alzheimer's Association has also made two short movies with me and I would be happy to go to other communities with those movies and my before times I was a licensed clinical social worker so I actually can help facilitate conversation using what I already have and I think those could be helpful to caregivers as well as people living with the dementia. So I am a certified senior advisor and I'm happy to have a conversation to help navigate resources if someone wants to sit down and have a conversation of what their person centric care model and their goals would want to look like and recently just met also up in Franklin County with the Northwestern Medical Center team and looking to start a support group up there as I was navigating that area found that there is no support group in that entire county at this time and it was a major need that was expressed in several outlets through skilled rehabs and age well offices there and the messaging was still the same that they have this need so we're gonna take care of that need and get that going absolutely and I thank you all for sharing everything that you have. I think it really truly does take a village to make all of this happen and the more we can teach and learn from one another the more we can be empathetic to this disease and what it does not just to the person but to everyone it touches. Thank you so much Alicia. We're actually gonna stop it but we'll continue the sharing but we're gonna stop. I just wanna say like echo what you say of like I appreciate John saying when the time is right I'll be a mentor. I'm just gonna shout out for the Alzheimer's association that we need community educators, we need support group facilitators, we train you Joe's the one but we train you, we support you, we hold your hands, we do everything but we need those people in the community because you know your community. You know if your library is friendly or not. You know where the spaces are so and you don't have to have lived through this to be a facilitator. Many of our interns have had no experience. They're taught how to do this and then they provide and hold space so people can come together and do what we're doing right here which is saying I have this, I need this, let's connect. It's a model that works so we always need volunteers. Before I share what's happening this afternoon I just wanna invite Kylie Cooper to speak for one minute. She is our state ombudsman and she's gonna just cause a lot of you mentioned issues that are related to her work and I just want her to be able to say hello so you know if you wanna connect with her. Hello so I'm with the Vermont ombudsman program at Vermont Legal Aid and we advocate for individuals who are in long-term care facilities or who receive long-term care at home through the Choices for Care program. We are government funded, we're always free. We never, there's no chance that you're gonna be charged by calling us. So if you have issues in long-term care facilities or with the Choices for Care program at home please contact us. We'd like to help. Thank you Kylie. Okay so this afternoon it's gonna be a little bit hectic and crazy for a little bit right now so I'm gonna hope that some people are gonna remember what I say cause I realize I should have drawn a map but I didn't. So by 1240 all of you should be on the steps at the front of the state house. Over there you will find your flower. We're gonna bring them over there for you and there will be a banner and we're gonna all meet there at 1240 and we're gonna have a picture taken with legislators that come outside and then together we'll go into the building and into the house chamber where Michael will give the devotional. You'll hear a resolution read and eventually representative noise is gonna say some stuff that you'll say, oh that sounds familiar and he'll say I'd like to recognize the people and we're gonna stand up and hold our flowers. Follow the leader. Some of us have done it before and we'll know. That's what's gonna happen. If possible when you go, in case we get separated because we're gonna be moving, there is an elevator in the state house. We're gonna be on the first floor of the chamber which is actually the second floor in the state house so you'll need to take the elevator. You probably can follow Betsy and Jenny to the elevator if you need an elevator or when you go in you're gonna literally go up one flight of stairs. We're gonna go in the door to the chamber and we're gonna sit on the right side until that's full and then you can sit on the left side but let's fill the right side first just to kinda create a critical mass. If there's no space there you can sit anywhere you want. There's a gallery even on the third floor which is the second floor of the state house. Everyone can go there. We don't have a specific plan for how to get to the state house. Howard is willing to drive people from here to there. It's a little less than one mile. It'll take you probably 10 minutes to slowly walk over there. So anyone who wants to walk over, some of us will walk. Howard's willing to drive people. I know Betsy and Jenny are driving. They may have space in their car. If you want to drive there should be street parking in front of the state house and you can just meet her and walk up to the front of the state house. So we're gonna all move over there at our own pace. I'm gonna leave a little bit quicker and take Michael with me and Jasmine because I wanna introduce him to where he's doing the devotional. So after the floor, after we're recognized on the floor and also everyone else is recognized and believe me there'll be people standing recognizing their daughter, their granddaughter, their uncle, their school teacher. After all that happens and they ring the bell, we're gavel, we're gonna go to the orders of the day. That's when we can all stand up and leave the house chamber and I'll kind of be going like, okay, let's go. You'll see it starting and we'll leave and then we have to get back here. So if you drove, drive back here. If you walked, we'll walk back here and we will have snacks for you here. We have a charcuterie boards to set up and we have cookies and we'll be doing two activities here looking at sort of how do we wanna stay connected and how do we wanna work together through the summer non-legislative session and also a little bit about sort of key takeaways from today and opportunity for people to continue to mingle. You can leave stuff in this room. This room is not locked so I wouldn't leave my purse here but you can leave your papers here if you're coming back or other things. You can put your cups over by the sink or leave them on the table. We'll put them in the dishwasher and clean them out and we'll be here. We're gonna try and start up around two o'clock again here. So we'll have about a half an hour to move from the state house back to here and we'll be done by three o'clock this afternoon. All right, so who has any questions about how this part's gonna work? Alrighty, thank you everyone for coming. If anyone can't join us at the state house, we will miss you and I will hopefully see most of you back here at two o'clock and I'll see you at the state house soon.