Alzheimer's Disease and Dementia Advisory Council

Yeah. Okay and his first yes ma'am okay. Hello everybody I'm state representative Julie Mayberry and I'm gonna be chairing the committee meeting today Senator Ricky Hill is also co chairing with me and we're going to try to. you know as share the committees every other month kind of switch it out I appreciate you all being here I do want to say we have some committee members who are not here today those who are not here or people who want to know what has taken place during this meeting we are live streamed so someone can currently watch this live as we're speaking but they can also watch it later at their own convenience so if there is a member of this committee or someone who wanted to be here wanted to know what took place they can always watch it this evening or at some other point in catch up notification for this meeting I thought was sent out a little bit earlier I apologize that some of you didn't know until a yesterday you know we will do a better job of making sure that you know in advance and by the time this meeting is today we will know when our next meeting is we have some potential dates and will ask for your input on those states we'll do that at the end of the meeting just to let you know that of I wanted to start out the meeting by again kinda introducing each member here and we're going to go around and some of the things that I'd like for you to do is first of all tell us your name tell us who you represent why you're on this committee and then tell us a little bit about why this topic is important to you. And then just give us an idea if we could have one goal what would be your top goal for this committee and I realize that's a loaded question because if you look at the act we've got lots of things that we need to accomplish but you know I just would like to just get some basic feedback from you to begin with so I'm gonna start and tell you that Again I'm a state representative district twenty seven I represent a good portion of selling counting a little portion of Pulaski County this is my third term and of I. Grew up with living with my mom who my grandmother who had Alzheimers when I was about four years old she moved in with us and she passed away when I was in sixth grade and she was my best friend I saw are the change from my grandmother who was this very sweet woman and I saw the changes in her **** she then became hostile sometimes would accuse us of doing things that obviously we didn't do but she was also my playmate much of the time and we would to sit in her bed and I'd play dolls with her and we'd hug the baby dolls and and play with them together and I even feed her apple sauce or baby food because at some point she was unable to feed herself and we spent a lot of time together and that's kind of my my background and why this is an important as all the role that it took on my family my mom raising five kids as a single mom and then having to also take care of my grandmother living with us so I appreciate being asked to chair this committee and looking forward to working with senator hill on this and I'll let him cut explain his background. Thank you representative maybe. Thanks Ricky Hill district twenty nine which incomers actually from Cabot but incomers northern part Lonoke County part of a plastic County White County and Faulkner County that a pretty pretty good geographic area there but the the bright side compared a lot of centers of I'm only about twenty five minutes from any corner my district in which someone travel two to three hours to get to get to their area so I'm pretty pretty fortunate there. All times always been a special place in my heart my mother was diagnosed with Alzheimer's and she served with a fourteen years of my dad being the World War two generation which I still consider the greatest generation ever refused to allow her to go into a facility at any time because he said it was his responsibility to take care of her grant this time he was in his eighties And so. So they can't tell you there would directly to my mother passing away from Alzheimer's my mother in law having the Parkinson's disease in the lower body cinnamon of which came with it in exactly one year after my mother in law passed away my dad has been to been adopted those with mild dementia so we we and both of us are only kids so with only children so everything totally falls upon myself my wife and so we've been been facing this now for fifteen years taking care one parent at a time in the Sukhumi continuing it for awhile longer so this is definitely I'm as personal to me and my family and so I think we've got a lot of things to do here and one the main goals that I want to try to accomplish here is to get the word out I'll let you know whatever I found out about even a group besides a one piece information Eric to see from a friend about a group that even involved all timers if not make a mistake Center. We've got to get the word out let people know get the voice out let them know but the books the resources out here to help them there's a lot of people here in rule Arkansas that do not have the opportunity to to have access to computers and everything else we need to get the word out verbally to everyone. Yes Davis will go the next. Thank you senator Helen representative Mayberry for agreeing to co chair and all of you for agreeing to serve on this council my name is David cook and I'm the public policy manager and government affairs lead at the Alzheimer's association Arkansas chapter so Alzheimer's is not only a job that I'm I'm embedded in but it's also very personal for me I lost my grandmother to the disease and ninety six she'd like representative Mayberry came to live with us in nineteen eighty nine following my grandfather's death and then course she passed from Alzheimer's and then here recently just this past year my father was diagnosed with vascular dementia and my mom and dad have recently moved to Clinton close to where I live and so now my mom be a primary care giver for for him so it has become very personal very real I think the memory of my grandfather was or my grandmother was kind of old and so this is very fresh to me now so some of the challenges care givers have talked to me about we're now starting to work through I think the the main goal I I really would like to see out of this group is just deeper collaboration amongst NGOs providers are working in this field every day to come up with some some good policy solutions going forward to help families who are navigating these challenges and so deeper relationships as well so I appreciate y'all's work and and investing your time into this work together. Can you hear me okay great hi Melanie Thompson I'm representing the Arkansas hospital association I'm our vice president of data and financial policy I'm also an associate fellow for inter I which is an international collaborative a researchers and practitioners who are interested in issues around a disability and people with complex conditions as far as assessment care planning and assuring the best access to care and that's really where my big interest in Alzheimer's and dementia comes from from that perspective really helping with access to care issues And with helping court with coordination of care to assure that individuals can reside in the healthiest situation possible and in the best situation for them and their families and so that is my main interest and I'm really glad to be here and part of this group thank you. And everybody my name is necessary whose and I'm the associate state director for advocacy and a a RP Arkansas we are a membership organization for people who are fifty and older and we're trying to help people who are over fifty live their best lives a lot of people are impacted by Alzheimer's we have two hundred and ninety thousand issue members across Arkansas that eight our efforts go way beyond just our membership in trying to promote health and wellness we have a particular interest in family care givers and I would really like to see some things come out of this effort that would support family caregivers more full. Arkansas Arkansas District fifty for state representative Johnny Reid I've been really watching this one for a long time. Looks like we got a pretty good handle hard traction we're getting even closer on cancer with the this Alzheimer's and Parkinson's disease is something we need to get a handle on and I'm just here to listen to learn and hopefully what y'all can get somewhere within backing you know hundred percent. Afternoon I'm doctor Bolles Simon I'm sitting in on behalf of Tony Bailey I'm the deputy chief medical officer at the department of health are the department of health always have mission is to protect and promote the health and well being of all Arkansans while we are being swamped with COVID right now of some assistance to lead the leading cause of death among people sixty five years and older and it's projected that the one and for our Kansans will be sixty five years and older I by twenty thirty so it has an enormous public health and health burden over all my goal you have to be in this our council meeting is to promote public governance and also professional education about the signs and symptoms of Alzheimer's among primary care providers across the state and also identification by individuals and families so that they are the dementia is diagnosed earlier and that necessary measures some bacon through protective health and well being of all Arkansans. hi my name is Jean way I'm the chair of the department of geriatrics at UAMS and I'm also the executive director of the land mass institute on aging my interest in of course of dementia is partly because this is one of our most important tasks as you already I think somebody's already mentioned both cardiovascular disease and cancer have made major strides in terms of our ability to take care of them and help them feel better as well as pro line there a good quality of life so right now actually dementia or the weird he has taken the position of the former words C. so if you get cancer now it's no longer such a terrible thing to have because we know there are many options most people are going to get much better in fact it's one of the leading chronic conditions now most Americans are living with but yet dementia continues to be a very frightening diagnosis especially because most people don't know as much about it is they wish that they could and I couldn't agree with all the previous Contributors here that what's more important than anything else for us to talk to our community for us to talk to our care givers for us to talk to the family the more we hear about it the more we have interchanges in discussions about that people will feel more comfortable and we're gonna be able to make strides and you know we also conduct research at NASA wants to conduct research both at the basic level Arkansas Griffin was invited but she's sorry she couldn't be here today we also conduct research and translational and applied level and also a health policy level so we want to help in any way that we can to make first of all the diagnosis of dementia not section right in order will be ready diagnosis but also to find new solutions and new therapy what I can tell you is in the last. Eighteen months or so many papers and I have found out that are hopeful that are not as young as we always thought that was and not only medication much of the wind pharmacologic much of the active lifestyle and what you that turns out that we can't blame our parents or our needs and more effective yes within our do our whole life to thank you he per level where we. Get out I think we will have more long drive and will have made tremendous progress or what's what we would like to do is promote thank you patient information sharing and continue to I think we assure everybody that or will in fact we have one their actions thank you. I I appreciate those words I just do want to say so this room is not necessarily conducive to the conversation I'm trying to get here today it is our largest room and that's why we're in here but it does make it a little harder to look and see everybody so we're going to the next meeting possibly look at doing it in a room so we can see each other's faces a little bit more again this is the largest room we have in social distancing it's nice and and all that we've got great technology in here but if you could when you are speaking though try to speak into the microphone and even though you want to turn around and look at us I appreciate that I love the eye contact I want to see you but people it is being live streamed and they won't be able to hear you if you're not speaking into the microphone so I don't know if you want to repeat anything real quick. No no that's fine you didn't know so that's why I'm trying to just and I didn't want to interrupt because you were so passionate but you were saying and I agree to yes go. Thank you. Okay good I'm doctor Kerry Jordan and I'm a professor of nursing at the university of central Arkansas so I'm kind of center statewide. And I've had a real interest in dementia care for many many years however over the last four years my parents moved in with me because my dad is in the middle stages of dementia and then my mother is having some mild cognitive impairment so. I've got a whole new view of the needs of people with dementia from a personal and a professional level and I'm excited I'm doing a little bit of research on my own over at UCLA that fits with the goal that I would want for this Advisory Council which is to support affordable evidence based therapeutic interventions for both caregivers and also for people with dementia in the community I that's one of the biggest things that I've noticed over the last four years is finding me and I know there's a lot of stuff in Little Rock which is great but when you have to travel forty minutes from Conway to access some of those services it's very prohibitive and soul. Finding ways to meet our rural community or people that aren't in the little rock area or some of these and metropolitan areas I think would be very advantageous to many people who were or are struggling with the disease and their caregivers. I'm Denise Garner and I too am a representative state representative from northwest Arkansas from fable area before the legislature I was in oncology mental health behavioral sciences nurse practitioner so I've worked with cancer and with psychiatry and At one of my most frustrating Thoughts about what's going on is that lack of coordinated efforts and and again the the lack of preventive efforts as well so both of those are very important to me I lost both of my parents wind with vascular dementia one with Alzheimer's within the last five years and was care giver for for both of them for for a long period of time so it definitely is it is a passion of mine it's been a long time patient and supporter of the Alzheimer's association for a long time and been a long time interest professionally and then certainly after dealing with personally it's become even more of an issue so I'm here to support in any way I can and I just can't think of anybody better to sit at the helm then I Senator Hill and and representative Mayberry so thank you for taking this on. Hi I'm I'm W. harissa I'm a professor of geriatrics at UAMS and the Reynolds institute on aging I'm director of the federal welcome and be sent to. And I like many others over here have a personal connection with dementia because my mother had suffered from seven strokes you develop wrestler dementia I was one of the main caregivers until she died in for some time I was a long distance caregiver which was very very painful so I am very familiar with a taking care of someone as a caregiver and then also being you know a physician and feeling helpless at times feeling very helpless and I see that with my patients when they come into the clinic and they could give us an and I can feel for them because I have been in that position. Of course being a geriatrician I see have seen cognitive impairment and medications a lot of them and I'm being now devoting time to the memory clinic I also have another clinic which is a primary care clinic and that also I identify many patients have problems but we have a dearth of people who are trained to take care of people with memory disorders even though we are alleged Christians some of us have better training and half of that the comfort level and being able to take care of the stations were very complex F. five or six so sometimes more diseases and have a list of medications that are you know more than a dozen medications that less sometimes they bring in the back full of medications some of them of a home for the don't know that desperate this you can click yours they go and buy things that they see advertised on television some densely expensive and useless things. So and many times they have been misdiagnosed as having as a muscle as they may have Parkinson's disease and they don't know that and they're not getting the correct treatment so there's so much lack of knowledge and inadequate training and not amongst physicians who are might be just primary care physicians and the very good positions and they're very earnest and they're doing a very good job but did not they trained and the specific condition and how to treat it and how to manage of any free complicated complex geriatric patient that ends up sometimes having you know disastrous results because people are misdiagnosed the under diagnosed they have problems because of in direction of made in and correction of medications and they come in with us sometimes the cartridges late thirty went rescue should be at least sixty and they're ready to collapse so we need my golden my number one goal has several goals but my if you ask for one goal is to provide better training to physicians to a junior at the bill to family physicians upside healthcare professionals how to better manage clinically session suffering from this devastating disease. And and also educate the care givers. Thank you very much. I don't know what I'd like to add nursing to the training as well because there's a real dearth of information. I just wanted to add to Dr oz or the nurses should be included in that as well terms of the training because there's really a lack of training of nurses and nursing assistants who were right at the bedside oftentimes dealing with people with dementia and sometimes by their actions could make things worse rather than better. Good afternoon my name is Esty Frazier and I am the interim director for the Arkansas minority health commission so I was doing some reading through the Mayo Clinic regarding Alzheimer's and dementia and I read that African Americans are twice more likely to have Alzheimer's with that being said my number one goal yes. To increase awareness about the condition. To minorities. Not only that to our care givers. Because care great givers go through a lot of stress which also advanced to underlying diseases such as diabetes stroke high blood pressure and so forth my agency and I've spoken to I grants coordinator and that's why I'm so happy that you invited me to be on this panel I just spoke to my grants coordinator yesterday that we need to do some type of awareness through our educational material that we disseminate at our community forms and also through our television and radio awareness states to get the word out to minorities about this condition. That's my number one goal thank you. Good afternoon my name is Rachel bunch on the executive director of the Arkansas health care association in Arkansas assisted living association I think I know most of your have worked with most of you at some point over the years I also have a personal connection with Alzheimer's and dementia I had two grandparents that had Alzheimers or dementia and my ninety three year old grandmother currently lives with me and my family as I said I'm the director of the healthcare association we represent around ninety percent of the long term care facilities in the state we have a lot of responsibilities a lot of different kinds of work that we do but education and training are some of the main things that we do we provide a lot of training and education for people who work in long term care facilities also people who are going to work in long term care facilities I will always you know looking for opportunities and hopefully we've done a lot of online work over the last couple years but we are really excited my team is really excited to start ramping that I've been doing more now that were were able to do some more things I we do a lot of education training on many things dementia is one of the things that we've done a lot of work on the last couple years in particular we had a large initiative Arkansas did not rank well for the use of off label anti psychotics for people with Alzheimer's and dementia and long term care facilities we did a large project on that and we're at now rank very well in the nation and have made excellent strides in that area and that's something that we continue to do and work on there's a lot going on in long term care facilities things have changed lots of updates things have happened we have been working on a few projects lately to modernize some things and facilities some of our regulations and we're in the process right now of implementation of a very important a piece of legislation that we worked on during the session to update our staffing standards and long term care and incorporate other per. Sessional types other people specialist other up provider types in our facilities in the day to day work that they already do and to have better capture that data so we're really excited about that project and have have some other things in the works we are we're always at eager to hear from other stakeholders and work with other people especially projects that relate to this topic this is something that we incorporate in all of our training from our activity director certification that we do for every facility in the state add to the training for administrators we have continuing education events that we do multiple times a year and then we also partner with various organizations such as the Alzheimer's association international office to provide resources and training for the staff working in our facilities at the other new thing that we're working on lately as some time initiatives about workforce and recruitment of front line care givers as well as working with some of the nursing programs on some some training pieces so My name is Kathy McAllister Griffin and I am I was a caregiver for my dad my dad was of. Diagnosed with early onset Alzheimer's into in two thousand five he has since passed away I served on the original task force and I'm here to make sure that all patients care givers and especially doctors and nurses as they were talking about education in rural areas because I'm from El Dorado my dad was from Camden and when you get. That far away from Little Rock or a big city it's very hard finding. Any resources so I am here representing families. How many was Brandon Smith I am your analyst for this particular budget council of work with police one of our cultures of for a different committee if the standing committee so it's great opportunity to meet all of you will work with you this particular endeavor thank you. So some of your new for the to this the student ran right now just so you know if you have a question or anything you want to ask you don't have to raise your hand or they just push your button will turn green now let represented Mayberry know that you you have a question or comment you want to make you should turn your own and just so you'll know if you're on the last screen within here what you're saying you turn red that's what they call a hot might so your own so be careful what you say in the in in in mean what you say if it's green you will not be recorded or heard. And I think we have one other member who has have route we thank you for being here will let you go ahead and so you can press that button and and tell us what we've asked is just that you tell us who you are who you're here representing and a little bit of why this is an important committee to you and maybe if you could list one goal which is probably hard to narrow it down to one goal but what would be the one thing you really want to make sure we accomplished. The executive director Alzheimer's Arkansas we are a nonprofit and we provide education resource this is and support to carriers across Arkansas. The. This is the fight for the people that I care for so that's why I'm here care givers needs support of that's one of the reasons I'm late today. You we need to provide their resources is absolutely necessary we have to build the infrastructure to help support care givers because our society look like right now is that set up for the additional needs I have children in the healthcare field and I can see it on both ends you know they're overworked they don't a lot of them don't have the necessary skills so I just want to make sure that we is is as our cans and we can provide the services and we Say something out. I want to just concur with what each and everyone else. Distinguished members of said I'm I apologize if you can hear me I can talk real loud what I want to do is just to invite each and every one of you and your families to come to our upcoming three day we have this every year annual conference on dementia and it's an update and it updates the clinicians updates to nurses updates other providers in an update the families and the care givers now for the people who are professionals we charge a nominal fee for for the family care givers they can come for free and of course we want to invite everybody and anybody who wants to come because as we've already discussed the war weekend I hear about it talk about it learn from one another the better we're gonna be able to take care all the people who need care and as challenges that there's other both ends of the spectrum but also it's actually three hundred sixty degrees that we want to take care of this everybody gets impacted I also have family members who have suffered dementia so it's it's personal and professional but it's also such societal and its community based and if we could all I kind of I think the more informed will do a lot better thank you can you tell me what the dates are for that. What what were the dates. Senator nine. It starts. L. Speaker who will talk about the latest in terms of the emerging solutions and diagnostic and therapeutic options and then the next day Friday we start early the whole day is about the latest in terms of research the latest in terms of diagnoses the latest in terms of treatment we will talk about Delerium which at not award for confusion because oftentimes are family members and be loved they become confused so we don't quite know what to do and it's really important for us to understand what that means and to get treatment for them earlier because earlier is better just like every other chronic condition earlier is always better than Saturday which is the third day will be devoted to the care giver aspects how to take care yourself while you're doing all these wonderful things for your family or friend or in the community I I think that the more of that we can do the better I want to make sure you guys all get invited we'll send you invitations to well I am I we're gonna have branded check to see if as a committee if we could attend that as a committee so what we'll have to check the rules on that that would be in December and earlier in December before we get into a kind of yes holidays and all that and so maybe we would attended as a committee so wolf will follow back up thanks for bringing that to our attention and see if we can do that thank you thank you then I think everybody get introduced right in miss anybody thanks the there are there some housekeeping things that we need to take care of in order to have these meetings and the very first thing is consideration to adopt the Alzheimer's disease and dementia Advisory Council rules a person. Roger so that would be one of the handouts that you have here thinking about. Help that is it okay it's exhibit C. I'm gonna give you all just a second to read over it I make a motion to approve. And a second all those in favor say yea. Anyone opposed. Okay thank you the next thing that we again kind of housekeeping rules to take care of to start these meetings consideration of a motion to authorize the cochairs to approve special expenses incurred by the Alzheimer's disease and dementia Advisory Council and that's just a motion to do that do I have a motion at. Motion by David cook and seconded by Dr way all those in favor. Anyone opposed okay. Now that we've got those things out of the way At David if I can have you perhaps go so we can see your face and you can speak directly to a stat that the podium down there he's going to give us a little bit of history a group met ten years ago and did a lot of work and so we want to take a look at the work that's already been done and updated and I'm so thankful that we have this document already as kind of a rough draft and to help us see where we need to go from here and David is got all the information so David taken away. I don't know if I've got all the information I appreciate your confidence. you should have two documents before you one as a two thousand eleven final report and you have another one that's that looks like this is what I do is provide you us some context on how we got here and where we go from here so prior to the the mid to late two thousands states had very minimal to know engagement around Alzheimer's dementia in the course of late two thousands more task forces began Arkansas was one of the first states to actually adopt the state plan although we didn't call it that we had a different name for it was a task force report but and and just that different states have different names for it but as you know Alzheimer's is not an unusual part of aging it's impacts across the Medicaid to a different state agencies different retired provider types but many states there's no coordinated efforts and there's a lot of duplications between programs and there's no action on certain areas since there's confusion on who should own a certain part of the plant so the state Alzheimer's plan is intended to be a state government plan that is developed after a meeting in settings like this and talking to family caregivers providers those in the community to assess the needs see what services and goods the state currently provides and then develop a plan with recommendations on how to bridge the gaps that we identified and so the goal is ultimately that the state of Arkansas has a clear in a coordinated approach to addressing Alzheimer's and other forms of dementia. in in most states they follow a pattern similar to what we've established here setting up an Advisory Council to continue the process and so in two thousand eleven as of result of ACT eighty nine the first Alzheimer's Advisory Council is appointed here in Arkansas that legislation actually had a sunset clause that expired two thousand seventeen and during government reorg the statute was to clean up language was removed to repeal and so we brought back the statute this last session to formalize a council and so what you have before you is the the tax report in two thousand eleven again one of the first ones that was ever adopted in the country and representative Bruce Wilkins and Senator Cecile Bledsoe served as cochairs on that council sense it's it's date two things happened one is we we look for this report we know that several aspects of the report was implemented but there were a lot of good recommendations that went left unimplemented and as you can look back at the history you you figure out there two things that happened of course represent Wilkens left the assembly but also the Alzheimer's association kind of shifted their priorities and we took more of a regional approach to state engagement a state policy issues so we need to own part of that we kinda withdrew from state policy we did re engage and we realign our priorities on national scale to priority for us to have a staff member dedicated policy in every state to which we have accomplished and so we have re engaged in in two thousand eighteen I came to the association and one of my first task was to read every bit of this and kind of look through it and take a look at how we begin the process of updating that state plan. So with that in mind I we we mess with the the Senate governors and governor Tim Griffin and discussed how we move the process forward into Expedia eight that process what we did was we met we we form an independent group of some of those members are here on the on the committee today and we we met for a prostitute three years we were interrupted by COVID and towards the end of our work but we worked together absent of legislation and begin the process of updating the state plan we met on a monthly or bi made by monthly basis we try to be as regular as we could we identified priority areas that we we chose to focus on and these are consistent with different areas that we seen present another state's there's always a comparar the state plan that seems to focus around public awareness and education of course strength in the work force committee of the parties that you identified already supporting our family care givers and looking at access to quality our access to care and also the quality of that care so those are certain trends that we see that are common in other states and those are the areas that we identified as independent working group and then we begin the process and we we've come together and we came up and approved this Plan of the handout number two a is what we we drafted with the hopes that you would take it and take a look at it and then give us feedback on that and again compared that one with also the two thousand eleven one but I want to stop and ask you if you guys have any questions or anything I need to clear up on our kind of went through that pretty quick. Yes ma'am. Is on behalf of everybody else who is experiencing personal or professional aspects of caring for patients with cognitive impairment I want to commend you and your committee especially because you guys just kept on going and you realize the importance of the even before there was really very much support for you guys and I just want to commend you we support you we would love to help you in any way that we can what I certainly appreciate that but I cannot take that credit by myself means bridge bunches around the table as well as Melanie Dr Bala several other ness was there as well as as Caroline and so it was a group efforts and we we came together with the intent of trying to move the work forward and expedient process but we didn't have that legislative authority and so this legislation that we did passed during the two thousand and Twenty one session just recently I three ninety one it's a little bit different than one ACT eighty nine eighty nine the original language what is. one of the the unique differences is that this Advisory Council rather than me in just for a temporary time as a permitted by three councils in established by statute and so our work also there's a component of the bill that as we develop a new Alzheimer's disease disease state plan and it's adopted by the State officially there's also language in the legislation that requires us to do annual reporting which also will make sure that we monitor implementation the state plan so we don't have a nice plan that just kind of sits on the shelf we have clear actionable items that also I think need to be measurable with valued input from those who are not a part of that group in the interim because there's more work to be done on that revise plan that we've put before you today. David about the challenge you with one one more issue to add to this. The financial impact that this disease has on families who are taking care of the person has all timers you can use a small nominal let's just say we figured ten dollars to fifteen dollars an hour whatever someone's charging you take that times twenty four times seven days a week. Times four times a month. You take them out to twelve months that ended been astronomical figure. I would like to see this for adopt some way or somehow or something we can do to help the financial impact this has on families. Not just a mental health issue but the financial impact because it all boils down to those family members who are taking care of this person has to pay. So I would like to first try to figure out some way to financially help and assist with that. Well Sir here we do know that Alzheimer's is the most expensive disease other chronic conditions to treat and Corso's family caregivers are providing that care and unpaid uncompensated rate and so I think we've kind of seen those priorities around this table this morning just talking about how much we need to support our family care givers I think that's not only the economic impact has on our on our state budget but also just everyday families like you were saying to me to. The goal when we leave here today because there's some of you have seen these packets before because you were on that committee some of you have never seen these packets before and even if you were on the Committee it might have been a while since you've read it so our goal would be between now and our next meeting is that you read both of these packets thoroughly but also compared this is a legislative Advisory Council and we have to meet some requirements by law so you do have that act in front of you and if you'll look at age really it starts on page four it goes over what we are supposed to accomplish in this committee and so it's quite lengthy at several pages so I'm giving you all lots of homework to do. but if you will also when you read that compare it to what the goal of this committee Advisory Council is and when we come back we'll discuss how do we want to go about addressing them with this I'd love to hear from maybe a some members that were part of the original committee putting some of this together if you care to share any input. Kathy I actually Kathy I saw at is Senator hill was going through and said here look here's a picture of her let's see what what page was it on page Page fifteen of a hand out number one we can read all about your story there. Yeah you wanted just. Now okay okay any other member care to share experience from the past troubles. Anything. Any other questions okay. Okay I'm anything else David. On just to echo I appreciate those that have come back around the table to help us up progress this work on those that have provided input an interim we we knew that we needed this legislative component as well so just very excited to be a part of the work also offer that if if need be I can provide examples of state plans from neighboring states if the committee wishes to have those you you did mention that if you wouldn't mind sending us of a link all have Brandon sent it out to everybody if there's maybe two or three other states that you think we've had some really good plans good success just to give us something else to see what someone else is doing so we're not reinventing the wheel assembly be great yes. Thank you I want to follow up because I was on the original group or the recent group that updated state plan and made this proposal and Senator Hill you're absolutely right family care givers spend a lot of their own resources their money their time in A. R. P. tracks that in the state of Arkansas and we estimate that four point seven billion dollars worth of uncompensated care is delivered by family caregivers in Arkansas and we do have some ideas for some policy suggestions that would help some of these families out. So thank you for bringing that up. Anyone else you have any other comment before you move on okay okay so then the next piece of David I'm gonna have you stay there because I think you might have some input on this that discussion of the building our largest dementia infrastructure act bold and we have filling in for Tony Bailey today we have Dr is it Bolles Simon okay thank you for alleged introduce yourself and give some background on what this is and how it might help this committee and help the state of Arkansas thank you representative and I appreciate that David's work I was part of that originally committee which was pulled together from statewide to address assignments dementia from the department of health I say had mentioned our mission is to promote and protect the health of all our Kansans and dementia is one of those silent epidemics that's creeping in our state and our country and costing the lives and livelihoods and the economic button is so huge for the state I'm for the nation with that regard when we came together with David and well the key partners years ago our objective is to build the core infrastructure in the state this is in residence from the CDC's call to action through their help the brain initiative which came about almost a decade ago and was revised and the most recent healthy brain initiative road map is aligned for that to address from the years two thousand eighteen through twenty three and as a consequence that several advocacy agencies across the nation are particularly the national association of. Chronic disease directors state health departments I have advocated for this bold act passing through the Congress the bold stands for building our largest dementia infrastructure act and which was passed and subsequently the funding was made available to the states however there was not enough funding so a competent of brand process was put out and Arkansas what is one of the seven states which received the funding from CDC for court capacity the CDC also funds five more states for enhanced are we are one of the seven states and other states are connected good Boston Massachusetts Louisiana South Carolina Tennessee and Idaho the idea for this a bold act is three fold it's dementia risk reduction and Dr we mentioned about some of the preventable things we can all do for onset of dementia and the early on set or laid down said at the second one is early detection of dementia oftentimes it dig it takes ten twenty years before someone with dementia is diagnosed in the community and the emotional and the the toll of the family goes through is so you know we all know about that and the third full does the dementia care giving and the resources and the training needed for not just for the the individual who has dementia but also their families and the care givers so that those of the three fold objective for this bold act and the to address that the CDC uses the policy systems and environmental approach to a. Dress this any health issues particularly dementia and of course policies where we work with the Alzheimer's association and I state representatives to make some policy changes acid leads to reimbursement by Senator leads to some Kerr giving at the long term care facilities of for people with the dementia and the systems the our healthcare systems have gotten so complex and compartmentalized and that the people at the forefront the primary care providers are left to fend that multitude of chronic diseases and the dementia and Alzheimer's dementia became one of them and so they a lack adequate resources for training needs and the time and reimbursement for performing any dementia Scarem diagnoses and again we have a center for excellence water aging in Arkansas and they work with the area on aging but that's that resources are minuscule compared to the need for the state so we need all hands on deck approach a including the primary care physicians nurses PA's nurse practitioners to come together to address that so that's one of the objectives for this grant is to bring a broader coalition of health care providers and fulfilling their training needs using the. The center for excellence here in the state and then the environment environment of course can start with the family and at every house sold where an individual with the dementia is impacted and this may include people the care giver I'm the caregiver stress and that resources the care givers need so What are funding as a small core capacity funding we want to use this leverage our findings and partnership to address and the policy systems and environmental level to address dimension our state I said loaded earlier by twenty thirty one and three are Kansans will be R. one and for Kansans will be sixty five years and older and that being the fourth leading cause of death and disability among older Kansans a this is assignment to have epidemic and it's a public health crisis in the making so I'm glad to have all of you for passionate about to assignments and dementia care here and health department is here to help and provide resources and support and appreciate all your input in that so let me make sure I'm understanding so there are seven states that have that have or will be receiving this funding of the seven states order are receiving the for I have received the funding from CDC so we already in the state of Arkansas we already have this money so we got the notice of art it starts September thirtieth coincidently next week okay so and and how much because I don't think you said that so what what number are we talking about so it's two hundred and forty five thousand. Okay. I have the specific dates two hundred forty five thousand three hundred and sixty dollars and and is that already earmarked in a certain way or that's here and that's kind of what we're to help you determine help help us understand. How we can help so where does that money go so the money comes to the department of health and to implement the one of the objectives of money is to implement the Arkansas Arkansas State Plan for the assignment as a dementia and the CDC give gives us some broad stroke guidance on how to use the moneys and it aligns very well with the state plan for assignments disease primarily working on policy systems and environmental changes acid leads to public education provider education and also building out broadband network also partners to address the dimensions of State. Hold on a second hold on hold on I can't turn it on. Okay. Okay Dr wait. Thank you for. A discussion can you tell us again who the seven states are because I'm trying to figure out whether any of our neighbors might be available for us to collaborate with so the seven states are Arkansas yeah Connecticut Louisiana who is our neighbor eight Tennessee okay South Carolina. Idaho and the seventy one the city of Boston and Masterson's okay and we do also they do find the five and hand states will get close to five hundred thousand better funding is double the amount so that five states are Georgia. Minnesota Rhode Island Virginia and Wisconsin none of them are are disclosed to us right but we that Louisiana and Tennessee yes actually that we could approach yes I think that would be fantastic thank you so much sure. I one thing I did not find forgot to mention as one of our core function as surveillance as well as surveillance is the annual assessment of the disease burden in the state so we measured through random digit to digit survey a telephone based survey call B. artifices it said measures the problems off dementia and assignments and other dementia light conditions and the in the state of Arkansas and as you all know for every one person diagnosed that are two or more what I'm diagnosed in the community so it gives us a it's gives a. Ballpark but it's not a comprehensive assessment. David did you have anything else to add. But not much just that we've seen in other states take this approach in one of the reasons that I think we prioritized having the legislation last session was to set the study of so that we could be qualified for this bold funding and we've seen of the the need to move quite a bit in terms of public awareness of other states using the the ball money that's that's coming into the drive public awareness and education and certainly as the the Department wraps up its programmatic working as programmatic plan will certainly be engaged and asking them to you know. Do more in terms of public awareness and education I think that's been one of the the shortcomings that we've we've kind of struggle with is just having the money in place to be able to drive some of this work so the bill money coming into the Arkansas is is very huge and that's one of the reasons why we we did we meet independent of legislation just to make sure the state was prepared to be eligible for these funds and I will add to that that that that cycle of funding and Dr Bachrach and from wrong is is it was designed to be a three year cycle of funding but Arkansas did not get funding during the first cycle of awards but they did get in the second second size cycle of wards so my understanding is they need to three years of programmatic work in two years which is where I think the council works hand in hand with with the agency to help with some of these these things forward that is correct. And I I think one of the first Parts of that is to establish a dementia care coordinator which will also work side by side with this counts. What what we need to do to to increase from being one of the seven to being one of the five check it six what we need to do to say increase that funding level so that as David said the aid that goes to we had to wait for another two more years and the next next set of funding comes in and we will be applying and that the good thing is since we are already part of one of seven we get the higher chance of being one off that. The enhanced funding states it all depends upon the funding availability if they more funding available them open up to more states to become enhanced which is what we are hoping for because the need is great the resource amended. Okay thank you sorry about having to repeat that but then of the former Senate or the current center will turn got my attention on something else so sorry about this is that. The act a follow up with that I think the idea is to to build the capacity to qualify for the next enhanced award and certainly the west Wisconsin St George's had other things in place they had existing stakeholder groups and they've been doing the work for a while that's what you know moved them up I guess as far as getting that enhance level so that's the way that we've been thinking about it that this disk this group in the work that we do will actually help to the state up to to get that enhance level ward. Okay I think Kerry Jordan is in my queue. Could you just clarify I know you said the cycle period but I you lost me a little bit so it's. So of bold was founded in two thousand seventeen and of course in two thousand eighteen was the first of our two thousand nineteen I'm sorry was the first awards the CDC gave for the bold act Arkansas did submit an application but was denied funding but during the second round of funding they were awarded a grant application was awarded and I think that was the patent CDC followed states that I actually submitted core capacity grants were not awarded receive funding during the second award cycle and that that legislation is up for debate right now on the procreation so process to get the twenty million that it's allotted on the congressional level so we can we that's what doctor ball speaking or getting more funding for for more states to be awarded Sir it is not uncommon for state spending submit funding they'll be scored and depending upon the Congress in DC when they appropriate funding as more funding available they will invite those school didn't get and the first time to come back for the second term funding. I think I got to just your question but because it was designed to be a three year grant they ward in this they were awarded in the second year so I still have to do the three year program but they have two years to do it so a lot of that programmatic work one of one pieces for example was to assemble a stakeholder groups committed Alzheimer's dementia which is what you have before you hear this this established group by legislation so that that's one thing that the that they can check off the list already so. Okay thanks Rachel bunch had a question. Yes thank you for the build act funding that is dedicated to Arkansas is that something that we have a current budget that set for how that will be spent or is that something that you're still developing and working on hi what's decided for use of that money now and what would be available for other opportunities we're still working on that original again that the ideas of policy system and environmental changes and also work with the action plan consignments action plan of course it's a short term funding so we Kerr we have to address what's realistic within the next two years to address but you're hoping this funding will continue and we probably will get and has to do more robust war. So but it's being worked out. and I think. As our is that it by saying it correctly okay I'll get to know all these names threw these committees over time. we have from through the renter's Institute on aging and Dr Lisa pulled one of our investigators Dr robin mcity and receive the grant call the geriatric was full workforce enhancement program. And she has done a lot of work in dimension the community and until now she's in the past two three yes yes bring three thousand. First responders which includes firefighters and EMT workers in dementia care. And has been given up a lot of webinars on dementias so I think all of that And ductwork which she's continuing to do could contribute to your success getting enhanced funding made. That's excellent I was not a matter of time that's good. One second okay. Okay you're recognized. I think you will this is a really really excellent meeting for us to get a chance to hear from one another to know a little bit more about some of the resources we very much would like to collaborate with you and to help in terms of augmenting all the things that we need to do to get three years work done in two years so that we would very much like to help you thank you thank you. Are there any other questions for these two. At a representative right. Yes thank you Mr chairman of gentleman. When we were introducing ourselves in the beginning I left something off that I really wanted to to ask someone who I thought maybe could give us an answer or at least do some research in the future and that is the effect of people who are in athletics and school analytics that can go to the head. And how that could have a part within this because my father which died with Parkinson's disease he told me that when he was sixteen or seventeen years old that he suffered a leg and a football game. And that he went for a basically half of a ball game and did not even know that he was there but he played ball the whole time and he thought that that could have had some affect on him in his older age when he you know became about seventy years old with that that'd. Possibly cost him damage when he was younger I'm going to defer dot explains Dr ray our doctor is on can comment about that. Yes Sir I'm so glad you brought this up because this is more important than we ever realized which is traumatic brain injury it's only become more appreciated now because to many athletes who have suffered severe head trauma and from home we've not heard more about including a forced some of our most famous boxers some of our most famous football players but I want to bring it also to the rest of the community which is. Many of our family and friends and neighbors have sustained automotive collision. And those can I. Implement huge trial mom my sisters one of them and nobody realizes until decades later what happened to them but the point of it is yes your dad probably had some real. Injury when as he described it to you he didn't even know where he was or anything and of course they can still play you know because that part is sold part of them but the point of it is yes trauma does happen it does include injury and the injury is long lasting so how do we prevent it how do we treat it we're starting to recognize it and that's one major pieces you know done National Football League the National Hockey League National Basketball jadi jadi all the athletic associations are now much more cognizant and the parents of the children who has to stay in the side injuries are now we allies in the email I don't want this to happen to my to me because I don't know what's going to happen to him later and these are the questions that we need to ask these are the things we need to do to support not only our elderly like everybody because you know many of us don't even realize that we have sustained major try traumatic brain injury we need to know until later but if we could have gotten down to it faster we could help to maintain brain function so I'm so glad you brought it up I think will make traumatic brain injury a major part I looked in here to see if it was included I noted that and what am I think we should included because it's a huge big deal and we just don't recognize it because you know. Everybody gets better because we are still young but it's gonna come back later thank you so much. Okay any other questions for these two. Okay yeah can go back to your cedar stay there wherever you feel comfortable but the next thing I want to do is kind of move forward to our next meeting and as I mentioned I wanted to establish a date before we leave here that meets approval of most members I know that there's always a possibility we don't get everybody here mentioning again if you can't be here for whatever reason you're sick or you have another commitment we are live streamed you can watch it later you can watch it live what have you we want you to be a part of this we want you here because I think it's better when you're here in person but we do understand in this world we can be a little bit more mobile to we want your input so the two dates that work out here in in our facilities at Tuesday October twenty six. At two PM or Thursday October twenty eighth at two PM basically looking at that last week in October and choosing the Tuesday or Thursday of that week we do have a committee member who told us they cannot be here on Mondays or Wednesdays so we eliminated those states and Friday is just kind of harder to get sometimes people in so is any discussion on October twenty six or twenty eight anybody know without a doubt you cannot attend one of those. See hi Kerry Jordan I cannot attend the twenty eight okay. A. Dr way yes I'm sorry I can not attend on the twenty eighth either okay well then that looks like the twenty six is leaning more in the favor. Any discussion I'm saying heads kind of going on the twenty six. the twenty six I don't think I need a motion or anything for that will just set the date S. the twenty sixth at two PM so the next thing before we get out of here is what obviously we will I've given you homework. Things to look at the act that we have to follow make sure we're accomplishing those would love your feedback what are we missing and what we already have I don't want to re do anything if we don't have to so I want to have that discussion that'll be the top priority we tried to have a presentation today and had to delay it and I think that Senator Hill really wanted them to come maybe next month to have DHS here to discuss dementia assessments and how that's done and that's kind of a a key and I think will create quite a lot of conversation so that was something we thought we would try to include in our next meeting are there any other things that you wall and if you don't think of it now you want to contact us will set the agenda the next week or so feel free I I always get away from something and I go oh I should have said but is there something that you know right now that you would really like for us to have someone come forward and bring information to us or have discussion whether it's this next meeting or or future meeting any feedback. Okay doctors are You might want to invite doctor robin Mackey to talk about all the things she has done so far for training caregivers and other people and dementia care. Tell tell me who that is again robin mcity. M. C.. Eighty. And who is that she's an assistant professor. Of nursing. Thank you M. S. Reynolds institute on aging. Okay. And the topic would be topic will be education of community the Bill and community individuals and first responders. And dementia care okay. Okay appreciate that we had upon. What hold hold on let me get David cook he was in first K.. I was accident okay. I would like to add that Arkansas leads in terms of educating first responders we were among the first across all the states to start this program. And we are part of a network of of the program of which is to geriatrics workforce enhancement program which used to be called geriatric education centers we continue to be continuously funded but we were the exemplary. Our state who first went out to all the first responders in police and everybody to try to outreach them all the other sites now have to try to emulate Arkansas so I just want to share that with you yes Arkansas. Thank you could anybody else have a suggestion of something that you'd like to see especially at this next meeting for us to. Okay I was going to say. Okay I'm. I guess that is is it no other discussion I have I'm gonna walk away and go that's what I was supposed to say. I got distracted well we will see everybody here on the twenty six and I'll I know we'll have Brandon double check on that conference that's on the ninth tenth and eleventh and see if we can make that our December meeting Because that would encompass a lot of issues and and everything so thank you for bringing that information forward look this is what it was just look forward to an email Brandon I'll be sending you a whole bunch of information that I said that he'll get to you which will also be a list of the committee members so you will have the lists you know who's here and who they represent and and all that so you have that information as well feel free to contact either one of us if you have comments or whatever I'm looking forward to working with Senator Hill and he'll take over next month's meeting thank you all for being here. Roger.