Alzheimer's Disease and Dementia Advisory Council
Video
Transcript
5 documents
Bills discussed (3)
| Bill | Title | Sponsor | Status |
|---|---|---|---|
|
HB1164
· 1 mention in transcript
Matched: “to this issue. We also filed legislation, House Bill 1164,”
|
TO ALLOW A PHYSICIAN OR HEALTHCARE PROVIDER TO OFFER COGNITIVE ASSESSMENTS FOR CERTAIN PATIENTS; AND … | J. Mayberry | Died in Senate Committee at Sine Die adjournment. |
|
HB1523
Act 951
· 1 mention in transcript
Matched: “…uced legislation that passed from Representative DeAnvault. House Bill 1523 became Act 951. It made some changes to”
|
CONCERNING MISSING PERSONS ALERTS; TO CODIFY THE ARKANSAS AMBER ALERT SYSTEM; TO CODIFY THE ARKANSAS … | Vaught | Notification that HB1523 is now Act 951 |
|
HB1592
· 1 mention in transcript
Matched: “…did introduce several pieces of legislation. We introduced House Bill 1592 that was consistent with our section of the state plan that…”
|
TO CREATE THE ARKANSAS ALZHEIMER'S AND DEMENTIA PUBLIC HEALTH ACT. | J. Mayberry | Died in House Committee at Sine Die adjournment. |
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- October 2, 2026
Representative Julie Mayberry
Unverified
0:17
Here as chair umpresentative Lesorren is has been appointed by our House Speaker to bring us into this new well next legislative session I guess I should say because I won't be here this is gonna be my last term in in office and I'm excited about Les warren being here I we're gonna actually start it off by just kind of reintroducing everybody who's here this is all new to uhless warren and and so that
way he can put a face to some of the
names and I'm gonna start it off by letting Senator Penzo say a few words of
Senator Clint Penzo
Unverified
0:58
why you're here and what we
look forward to well Senatorliff Penzo from Senator Clappenzo from Springdale I represent district31 my my father had dementia so this is a very important committee to me and umm appreciate all the people that are members of the
committee and all the work they're doing to help help patients out in this arena so and was gonna finish with it but I just want to thank Julie for all the years of service. she's got a real passion for for children elderly disabled communities so that's something that's very important to me and and I appreciate your leadership in this committee and other things and you're going to be missed thank you
Representative Les Warren
Unverified
1:50
we'll let you I'mpresentative Les warren from Hot Springs. I had my mother with Alzheimer's for eight years. I moved her to Hot Springs and saw all the different phases of Alzheimer's and not so pretty but it gave me a real appreciation not only for those who have the
disease but also for families and caregivers and I want to do everything I can to hopefully put an end to Alzheimer's one day it seems to be affecting more and more people so
Representative Denise Jones Ennett
Unverified
2:35
glad to be here Stephanieook, I'm the executive director at Alzheimer's Arkansas and we provide free resources
Speaker 14
2:41
to family caregivers across the state personally my mom just participated in one of the newer blood tests for biomarkers for the tall protein we got her
results she has Alzheimer's her mother lived with Alzheimer's and my great granddad and so it runs deep in my family and I'm doing
Speaker 15
3:01
all I can for my switch not to turn on. so
Speaker 17
3:09
glad to be here. I'mjody Anre I'm the executive vice president of the Arkansas Hospital Association and like everyone else here also have a a personal story. my grandmother definitely had dementia and we all suffered
through those phases the sweet ones and the ones that were not so easy to handle on the way out but I'm glad to be here glad to provide open honest dialogue about difficulties within the hospital space and clinical trials and those kinds of things and also stand
Speaker 16
3:39
ready to work with you all to try to come up with constructive solutions that makes sense for patients I'm Amy Lee over
Speaker 19
3:50
to McCoy and this is personal and
professional for myself as I have also lost a parent with dementia and professionally I'm the director of the UMS Cents on agging and we have a center representing every county in the state of Arkansas your master tobacco settlement funds at work as we are there to advocate not only for the community but for healthcare professionals students and healthcare professionals and ensuring that everybody even in the rural areas are receiving
Speaker 22
4:24
the best practices across the board. I'm Tony Bailey. I'm the branch manager for chronic disease at the Arkansas Department of Health so I'm their representative of course allheer does touch my family as well and I'm
Speaker 24
4:39
I'm really interested we'll continue to be interested in what this panel has to has to discuss we we
Representative Julie Mayberry
Unverified
4:51
have members of the house and senate who have joined us
and I love when they show up to these meetings and I definitely want people to know that you're
here so please introduce yourself and a little bit of why this issue is important
Representative Jessie McGruder
Unverified
5:09
to you as we continue to go around good afternoon everyone thank you madam chairir my name is Jesse Macgruder I'm the state representative from District35 Criton County I'm here because I I lost a aunt to all timeerss and an uncle to dementia so I think it's important being in this position
that we understand all aspects of everything that happens and that's
Senator Fredrick J. Love
Unverified
5:34
why I'm here today good afternoon everyone. Senator Fred Love
district 15 here in LittleRock I had a a grandfather who suffered with Alzheimer's
Representative Denise Jones Ennett
Unverified
5:48
good afternoon I'm statepresentative Denise Ennnett district 80 I'm here to learn. thank you.
David Cook
Unverified
5:58
David Cook, the director of government affairs for the Alzheimer's association we cover all75 counties offer care and support services to all the families who are impacted in addition to my professional capacity also feel this disease personally. I lost my grandmother to Alzheimer's disease in the nine0s and my dad is currently living with frontal temporal dementia. thank you and this committee for all the you guys
are doing all your support thank you good afternoon my name is Brad Hall, state
Brad Hall
Unverified
6:29
representative district 24 and you know I've also lost family
Representative Brad Hall
Unverified
6:31
members to this disease and it will affect everybody at some point in their in their time you know in in your life and I have a constituent in my district that has just recently lost his wife to this at an early age and and he really wants to maybe try to pass some kind of legislation maybe coming up in the next next session and so I'd be willing to work with you all you know getting some of y'all knowledge about about what we might be able to do for folks and families that are dealing with this issue. thank you
Representative Joy Springer
Unverified
7:03
good afternoon and thank you madam chairir.greetings to all of you that are here today. I've been in this committee before I'm not a member however I do I did have a parent my mother who suffered with Alzheimer's for 16 years and I was a caregiver during that entire time so this is near and dear to my heart. thank you good
Brad Nye
Unverified
7:26
afternoon my name is Brad and I'm the deputy chief of staff for the Arkansas Department of Human Services our medicaid state agency
I'm actually filling in for Jay Hill today who couldn't be here. Jay is the director over all of our aging programs at the department and really is a subject matter expert for us very excited for him to be here in committee and hope to be here as often as I
Speaker 44
7:56
can be as well I'merryerdan. I'm a professor of nursing at the University of Central Arkansas and I run a program out of UCA called the Interprofessional therapeutic
Activitygrame where we are trying to engage health profession students to meet some of the service needs in the community for people with dementia I'm also an informal caregiver of a person with dementia. My mother has been
Speaker 45
8:21
living with me for eight years and my dad also had dementia and he passed
Speaker 46
8:31
about a year ago Hi, my name is Jean Wai highpresentative mayyorrry and
senatorennzo and Mrsmith I'm grateful to be here and I'm I have a
Speaker 49
8:43
long term history and interest both personally and professionally in aging and of course the main one of the main conditions associated with aging is cognitive impairment in particular dementia in particular Alzheimer's so it's a major interest of many of us who are here and who are also in the institute on agging
Speaker 51
9:10
at UMS good afternoon. I am Goharrazer. I'm a physician scientist. I work at UMs in the department of geriatrics with Dr. Jean Wei. I'm director of the memory clinic over there and personally my mother had dementia it was her caregiver and my sisters have been her caregiver for a very very long time. So personally affected with that and I see patients as young as
in their fortiess with this disease in the clinic every single day we are successfully treating now with monoclonal antibodies one lekanimab and the second one is soon to be approved at UMS Donanaab we are very very successful in our patients are very grateful most of them are doing well so I'm excited to be part of this committee because we are making inroads in this terrible disease.
Representative Julie Mayberry
Unverified
10:13
thank you so much for those introductions. I see some member mem other members have not joined us at the table but they're here in the room and I just want to acknowledge their presence because we appreciate you all being here Representative Keith Brooks, Jeff Wardlaw and aaron Pilkington thank you
also for being in attendance the more eyes and ears we have on the subject matter is greatly appreciated so thank you also want to acknowledge that we can't do our job without our staff and we have Jessicaiel one of our staff at
t or ney s amazing all that she knows and how quickly she can put stuff together I'm always amazed at at at her efforts constant vaults is is new sayy hello Constance and also Katty Hickham thank you so much both of you and Brandon do you want to say anything? No Brandon Smith kind of holds us together if I don't respond orclint doesn't respond in some way he he keeps messaging us you know hey we gotta do this we gotta do this so they they keep us in line so we really appreciate all their their help
and their work. OK the very first thing that we need to do is consider the adoption of our Alzheimer's disease and dementia advisory Council rules of procedure is there a motion
to do that sou so moved is there a second and Stephanieook's second, thank you all in favor sayy aye ayeone opposed?
OK thank you motion passes. Next is the consideration to approve the minutes from September 24th it's been almost a year since we've had a meeting. we had a little legislative session slip in
there so that took up a lot of time is there a consideration or a motion to
approve the minutes Stephanieook, thank you. is there a second? thank you and all in favor say aye aye anyone opposed? thank you. OK the second is to consider a motion to authorize the co-chairs to approve special
expenses incurred by the Alzheimer's disease and dementia advisory Council I will tell you that in
the past we've never had to make use of that so it
it is there but we haven't we haven't used any extra funds for this committee. Is there a motion for that so moved is there a second ? OK all in favor sayy aye ayeone opposed? OK so now we will move on to our 2025 annual report every year we have to have a report that we send on to the Speaker of the
house also on to the senate and also to the governor's desk just kind of summarizing what has taken place and David Cook is ready to do a presentation all of you should have a packet in your hands to go ahead and take a look at that as he walks us through it David it's all yours thank
David Cook
Unverified
13:08
you madam chair and just on the onset just wanted to thank you for your leadership and Senator Penzo
and for your support during the past legislative session this group has grown since our first
efforts 20182019 we met in a little room next to the healthalthcare association and over the last seven years it's been amazing to see just the legislative attention to this issue grow and the state makes some great strides in implementing the state plan so I really appreciate all those who have been a part of that effort to supported our work at the association but also the the nonprofit representatives here who have helped move this work forward in a programmatic way and so certainly want to acknowledge all the the programmatic work that's
happened to help us implement sections of this plan also apologize I don't know how long my voice is going to hold out but I did keep this brief for you guys but also my sake as well so the what I wanted to do is start out with just the the latest facts and figures this is how we we typically start these meetings I didn't want to keep you also mindful of the fact that this is our our last implementation report and the
state plan is due for an update in2026 so of all the priority recommendations that we will submit today that is of course paramount we'll need to restructure to update the Alzheimer's state plan which will be due a year from October first. so for today's time I just wanna go through some of the prevalence the latest updates and prevalence then we'll do a quick recap of the legislative session and then I'll give an overview of some of the highlights from the state plan
and then I'll close it with some priority recommendations based on what I present today
these were released in March of this year of course we know there's over7 million Americans who are
currently living with Alzheimer's disease. if we do not get ahead of the curve that's number will look like closer to 14 million 13.7 million by 2050 so we are seeing prevalence continue to increase we did this past annual
report we did a special section to really trying to understand Americans perception on some of the latest treatments and what we found out the ty2% of Americans would want a medication that could help slow the progression of Alzheimer's following a diagnosis and so a lot of public support for the treatments and as Dr Azar had mentioned amongst other things in the scientific landscape a lot has
changed since 2022 we we authorized this report a lot has changed in the healthcare space. a lot has changed in Arkansas a lot of a lot of great things have happened in research as well that's
helped us move some of these things forward I will you do have the Arkansas figures in
the the annual reports you have the Arkansas state fact sheet just draw your attention to a few highlights over60,000 Arkansans over the age of65 are current living with Alzheimer's disease that number does not
include those individuals who are living under the age of65 who may be living with a younger onset diagnosis or as you all know dementia is kind of an umbrella term there's many different types of dementia and that number is not included of individuals like my father who's living with a frontal temporal dementia. We put 11.3% of adults over 65 are living with Alzheimer's. as you know when someone receives a diagnosis caregiving duties typically fall first to the family and an
Arkansas more than 173,000 Arkansans provided265 million hours of unpaid care for a family member and that's a contribution of5.4 billion dollars in cost savings to the state of Arkansas and so the more we can do to support our family caregivers we we have identified that as a committee as a priority of ours I didn't put the medicaid spend on on the screen but just so you know the impact on on state medicaid Alzheimer's of course is the
most expensive disease to treat and to care for and the medicaid impact estimate for 2025 will be close to492 million dollars just here in Arkansas. I did not include the make
sure you guys have the same thing I do. I did not include the the legislative recap in the annual
reports and the reason for that is I I highlighted in this last in a report that
things were very specific to the status of implementation so we really focused on the recommendations that were included in the report but I did want to give you a legislative summary of what happened during the 2025 legislative session so if we could real quickly just walk through this section we did introduce several pieces of legislation we introduced House Bill1592 that was consistent with our section of the state plan that dealt with public health
education and awareness we had conversations with the Department of Human Services as well as the Arkansas Department of Health each state agency expressed fiscal concerns because of that we ultimately pulled the bill down but we also had a very constructive meeting with the leadership of both Department of Human Services and the health we ultimately pulled the bill down but we also had a very constructive meeting with the leadership of both Department of Human Services and the healthal department about further implementation in the public health section and some things that the agencies could do to together in collaboration to help us move some of this work forward
so we ultimately decided to pull that bound that that down access and and quality of care of course was a really big issue we tried to work on during the session we did have as we've mentioned already advancements in scientific research that gave us our first FDA approved treatments for Alzheimer's disease those treatments are only effective for people in the very early stages of this disease. so early detection and diagnosis is so
critical and there's certainly some challenges around access that we have here in the state of Arkansas so what we looked at during the 25 session is a piece of legislation that would have required the employee benefits division to authorized coverage for FDA approved treatments for Alzheimer's or excuse me for state employees so the scope was really small we were able to pull some claims data from Illinois and some other states to
combat a very exaggerated fiscal impact number again I mentioned that this is very very very specific patients and our estimate was maybe 10 state employees across the board would qualify for something like this so it was very insignificant number of patients who actually qualify for these treatments this house this this legislation did advance out of the house strong bipartisan support but it did fail in the senate committee there was some currentn concerns about the fiscal impact but also
some concerns about us enacting legislation that would have removed some authority from the employee benefits division so that that's an issue that several legislators have expressed supportive of us bringing back and so that's something that we would love to work with the council on rethinking
our approach to this issue we also filed legislation House Bill1164 passed with
an overall majority in in the house
again72 to10 this piece of legislation would have required all private insurers across the state of Arkansas to implement coverage for diagnostic and screening services it would have also had a fiscal impact on the state because it would have required the state medicaid department to establish a reimbursement code for a Cms code that existed it's Cms code 99483 and under that code medicare beneficiaries can receive a
cognitive screening and care planning services during an annual wellness visit. we have been trying for the last three or four years to make that benefit available to our medicaid population during the course of this discussion that was concerns there was exaggerated fiscal impact numbers and so we had presented real claims data from the state of Kentucky which I'm happy to share with you this was just given to me last week but over 6.5 years they've had this coverage in
place in Kentucky and over that6.5 time period they've only paid out488 claims and so the exaggerated fiscal impact number that we saw by comparison it would have required us to provide Medicaid coverage for everybody in the state at least3 times and then that three time population also qualify for this benefit and so it was way out of scope and based what we're seeing in claims data the fiscal impact would have been minimal so in the course of the meeting we had with the
secretary of Health and the secretary the then Secretary of Department of Human Services there was an agreement made that they could cover this with their existing appropriation but late in the session when we tried to run it in the senate concerns over the fiscal impact resurfaced and so we ultimately decided not to run it in the senate's side yes ma'am cognitive screening are
Speaker 75
23:04
we talking of doing like MMSC test like that OKok I'm I'm
Representative Julie Mayberry
Unverified
23:12
sorry you're recognized to ask a question and make sure your microphone is
Speaker 43
23:16
on. sorry about that so what was involved with the cognitive screening in that what was going to
Speaker 44
23:21
be involved was it just like when they go to their healthcare professional they do like amMsC or an easy cognitive screen is that what was being
David Cook
Unverified
23:30
mandated this would deploy cognitive assessments a miniie cog like the Ss C or or theOCA that could be done in a pcp office so by default you would expand access to that initial diagnostic tool
and again it's a very inexpensive test to run you
Representative Julie Mayberry
Unverified
23:50
may continue we'll have a greater discussion after all of
this is presented as well so if you want to hold your questions you can but if it's more appropriate to ask at the same time that's
David Cook
Unverified
24:01
fine too. go ahead David thank you we also find found a piece of legislation that was consistent with with the quality of care recommendations that we have in the state plan we we we noticed here in the state of Arkansas only home care
providers so that's providers who are providing that inhome care across the state how do you say home care two different ways. Well I guess that's it but what we did notice that only here in Arkansas only providers who accept Medicaid in terms of payment are required to receive a license and so if you want to take private pay you do not have to have a license here in Arkansas you can put a bumper sticker on your car and be in business that concerns us for
several reasons. first the vulnerability of patients with dementia but it was also concerning because the work that we did to establish training requirements for home care providers that that dementia training component we passed it does not apply to providers who just take private pay so this legislation passed out of the senate with33 votes but it did fail in the house committee and the health department
did express concerns late in the
session around how they would some of the challenges to implement a new trading requirement or regulations sorry there is some additional legislation that we did support we and when I say we I mean the Alzheimer's association but it
did impact the populations that we serve there was a caregiver tax credit that was introduced but it did not advance out of the the reven taxxittee on the house side but we like that because it gave an
enhanced caregiver tax credit for families who are providing care for an individual living with a dementia diagnosis we also thought that that was very consistent with federal legislation called the caregiver tax credit that's moving through the federal legislative process and it will it will create that5,000 dollars federal tax credit so we'd love to see that happen here in the state. there
was also introduced legislation that passed from uhpresentative
deanneault House Bill1523 became Act951. it made some changes to the silver alert system most notably it created the missing and endangered adults alert and that was specific for people who were living with dementia but may not qualify. Their case may not qualify for a silver alert so it's good to have this other alert out there for the dementia population and that will only go to reinferforce some of the first the law enforcement and first responder training that we have in place so that's that's very critical
and then there was some clarifying language introduced by umpresentative Lee
Johnson, House Bill1169 became A383 and this added dementia as
a qualifying condition for involuntary commitment in a hospital especially if there's like a behavioral concern dementia wasn't a qualifying condition and so this
kind of made that a qualifying condition and before we go to this next
Representative Julie Mayberry
Unverified
27:19
section I I just wanted to address some of the
legislation and I'm going to keep it very brief and very simplistic. It was a very frustrating session to me personally and so that's why I'm enthused and seeing as many legislators as we have here we spend a great amount of time talking in here on these issues and really discussing them and saying these are the things that we need to do and ultimately it ends up being in the hands of legislators and we
had a lot of legislators who I probably did not do a very good job explaining the needs beforehand and so moving forward that's my advice to the new chairs that will be leading this is to make sure that we're doing all that we can to get legislators to attend these meetings whether they're physically here or they watch online to see that these are topics that we've talked about and we've had the experts in the area of Alzheimer's disease and dementia sitting at this table
and really talking about these issues in depth because it's really hard in a legislative session to have all of you come up here and share all that you've already shared over and over again and meetings occur at various times and sometimes you might be sitting here for two hours and that bill never even got heard and you all have lives outside of here so that would be my one piece of advice moving forward it's just that we we really try hard to engage more legislators
over the next year before the next session on what those bills might be. any other comments on anything you've heard
from David Cook on legislation from anybody questions? Yes
Speaker 50
29:07
Doctor Wey oh I'm sorry Doctor Bagar you you go ahead first OK one
Speaker 51
29:13
question abouthP1164 about the cognitive screening I didn't quite understand that very well. you said it's it is part of
annual wellness visit we have in our built in record in epic slums which can be done but that takes time and you said that it needs to be mandated and what code will be will be just apply the annual wellness visit quote to it and if it is not done, will the code not be applicable? so thank you for that question
David Cook
Unverified
29:55
sorry I'll clarify that so Cms does has authorized the code and so your Medicare population already qualifies for that code this would just expend that benefit to the medicaid population so those individuals under the age of65 and the state would have to set a reimbursement for that code for it to be active for people under the age of65. so it's for the medicaid population
Speaker 89
30:20
that's all that's the difference so thanks
Speaker 49
30:26
and Do Wa yes I would just like to thank everybody for all your hard work, all your efforts and what I would like to say is Winston Churchill told us never ever ever give up so I want to say that to us too it's like if people don't quite understand what it is we're trying to convince them of or explain to them it is ok. we're going to do it again we're gonna do it again
we're going to do it again and we're just not going to give up because this is so important that I want to encourage all of us to just it takes a while it
Speaker 46
31:09
takes a while to convince people sometimes and it also takes a while for them to understand some of
Speaker 49
31:16
the things because it's complicated so I just want us to remember Winston Churchill and never ever ever give up. thank you
Representative Julie Mayberry
Unverified
31:29
all right we're ready to go uhpresentative Springer thank you madam chairir. I just
Representative Joy Springer
Unverified
31:38
want to give a shout out to the reynolds institute onagging. they took care of my mom. they did a fantastic job and I'm not sure if I said it the last time that I was hereuaMS is just wonderful in my opinion. thank you so very much you are
Speaker 49
31:55
most kind and we are deeply grateful
and any time you would like any questions answered or any advice or any help, please let us know we would be deeply grateful and very privileged to be able to help or your friends or anybody that you know that needs help thank you
David Cook
Unverified
32:23
you you have the implementation report in front of you it is very text heavyavy inside the implementation report I
provided notes for each of the recommendations we will not go through all of them today unless the chair thinks otherwise we should read them all seeing a no so I did want to just highlight some of the things that are happening in the space and I will go off script a little bit here just to to to kind of emphasize some of the the programmatic work that we we're seeing so you know in the public
awareness and education piece I think some of the key accomplishments is just expanded government infrastructure because of that we're getting more again more legislators engaged and and interested in this issue we've certainly seen legislative support but it's because most of our our members of our assembly feel this issue personally you know or at the least they know someone who has lived as a caregiver or a patient so I think having a permanent
Alzheimer's dementia advisory council and then statutory requirements to update the state plan has been very critical for us that keeps this issue in front of the general assembly House and Senate leadership and the governor's office I think another key piece of infrastructure we did establish is authorizing the dementia services coordinator that that legislation passed in 2023 but as
of today September 15th that position still remains vacant at the Department of Human Services and so that is
an area of concern that I'll touch on just a minute also we've seen improved data collection we have a policy change at the department of Health that will ensure that the caregiver modules and the cognitive decline modules are included in an annual rotation so that they'll they'll each be ran at least once in a six year period that will give us some real time data about what's happening in terms of cognitive decline in the state and also what what what
the the the Arkansas caregiver experiences like can't say enough about bolt number3 I think we've seen in increased collaboration. I think one of the things that spurred this group to come together is that a lot of people were doing work in silos but the left hand didn't know what the right hand was doing and there certainly wasn't collaboration but what I've seen the nonprofit community Alzheimer's Arkansas our association the the
Reynolds Centers on agging the institutes on agging that are across the state each have stepped up to ramp up their offerings we've seen partnerships with state agencies the Department of Human Services providing training to some of their key staff such as the long term care investigators APS workers we've seen increased collaboration with the department of Health working through the minority healthalth the minority healthal thank you I said I was trying to say condition the minority
healthalthcommission Kinney's been an amazing partner being able to provide resources to the mobile health unit has been key and and I think I want to mention just Doctor Jordan's STAP program at UCA that
has expanded over touAMS and there's more more places opportunities looking to expand that program so that's just been
amazing work that we've seen a groundswell happen. a lot of increase again programmatic work that you don't often see in policy but it
is still happening driving these awareness pieces forward. but I think what we are most excited about the the Alzheimer's association again it's the deeper collaboration among entities and the opportunities that has created on the access to care and quality of care again I'll focus on the partnerships between nonprofits and the public using our existing infrastructure which is something that we've always
talked about here in this council whether it's working through the tripleAs the mobile health units or you know of course the minority healthal commission's health unit or theenters on agging but using our existing infrastructure not having to go create new spaces but finding ways to enhance the program the programming and the the services that are offered in those locations and so we've seen an increase in the number of support groups caregiver education and and just access
to those critical support services for caregivers. of course I'll touch on this briefly here but more on the family caregiver section just having
that pilot program the respite program has of course increased access to to respite services in parts
of the state that were unable to access that especially in rural areas but also seeing because of having that payment model in place of facilities come on board to offer weakened respite maybe it's an assisted living or
or long term care we've seen some facilitybased re s pi te escalate because
of the grant program and then though it's not a part of our reports science has certainly changed the landscape in terms of there's quite a few recommendations on the access to care section that focused on using virtual education offerings telehealth the way we use telehealth is drastically different than it was before the pandemic isn't that rightjody An
so as those technologies have increased we've at the association expanded our services through Project Echo to get into more health systems where the the struggle is is is getting that education and that that training to the rural providers who may not be closely connected to a health system so that's one of the challenges we're trying to address there's also been advancements not only in in treatments so we've talked about today but in our in our ability to diagnose you know the last couple of
years one of the the the areas that has grown here in the states is the availability of amyloid pets because that PEt scan is critical critical step in the diagnostic process prior to having treatments and that payment model in place physicians relied on lumbar puncture or they referred their patients out of state to receive an amyloid PEt scan but now because amyloidpe is critical
in the diagnostic process to make sure a patient qualifies for treatments . what we're seeing here in Arkansas is that oncology clinics are filling that gap and so now we do have access to amyloid pet which is encouraging but as the science evolves in the biomarker space and being able to rely on a blood test becomes something that we can use as a standalone test or a more critical part of the diagnostic process that will change the game for states like Arkansas who have limited access, especially in rural
parts of the state so we're excited to see what's happening on the research space and biomarkers because if the blood test continues to improve that will be another tool that we can put in the hands of primary care that would be huge for patients
Speaker 46
40:03
across the state of Arkansas. doctor We yes I want to follow up on David's comments with regards to diagnosing soon we will also have beta amyloid available for the
amyloid test in LittleRock but even more important than that we now have the blood test and the blood test is equally absolutely equally as critical and as valid as the amyloid pet so you really don't need amyloidad anymore anyway. The blood test for the faso yeah faso tau protein phosphor217 to be specific
Speaker 49
40:47
is good enough it is accepted by insurance accepted by everybody else for diagnosis so I think this is all important we are making major headway that way so I'm just real pleased to share that progress with you we are fully fully equipped and resourced with diagnosis as well as treatment we now give the intravenous infusion of
leanimab or lakembi under Doctor Azar's direction at UMS but also at other sites around the state and many many of our patients who have received it I'm so grateful to report theirOCA scores which is you know the Montreal cognitive assessmentest. they have demonstrated significant improvement. I'm really serious and some of these people have returned to work. I mean how good is that? That's fantastic. I'm I'm just
Representative Julie Mayberry
Unverified
41:48
gonna add that I think that we need to dedicate an entire future session of course I won't be in charge we'll discuss this in a minute some future agenda items but two we had we had a fabulous gentleman present information to the house committeesuranceittee who was receiving that drug and it was remarkable it was fabulous testimony very touching and I think we need other people to hear that
testimony and so that would be I know I'm getting ahead and we need to get back into what we're discussing but just a future discussion of actually seeing people now receiving that medicine because before when we were talking about it it was the medicine is going to be available well now it is being va it is available and it's making a difference and we need to make sure it's available to as many people as possible so future item the other thing I'm sorry David before we get back
because we are kind of talking about the respite grants and before we began the meeting Stephanie Cook kind of shared some information with me and do you mind telling everybody what you told me when when I walked in
Speaker 14
43:07
so we we received just60% of the total amount that we thought we were going to get when the fiscal year July 1 began we received
$167,000 and we have already approved and granted over 1 42 of that since July1. so the the grant is is needed we fully demonstrated that across the board the rural numbers are are are improving so more and more rural Arkansans are hearing about this grant we could use double or triple the amount in addition to some matching
funds from other sources and our organization quite honestly well and thank you thank you for the opportunity. we need to include in that administrative fees because it is a burden on our small nonprofit organization to administer this grant free of charge and so that's something I've been concerned about with with our budget process so it's it's but but but it's needed and we would and we're honored to be able to be a part of the process and
I want specifically thank David for all the legislative work you've done in addition to other members of this council we couldn't have done it without you but our caregiver stories are remarkable and we have hundreds of those each each person receiving a grant has to give us feedback on how their funding was used so we have all of that data if anyone is interested in these stories and their feedback you're welcome to contact me or I'd be happy to discuss that further you know
Representative Julie Mayberry
Unverified
44:51
later down the road. OK thank you for sharing so so just kind of to repeat and reiterate you know by November 1st without a doubt you will no longer have money that was supposed to last all year long so legislators as we begin talking budget that might be something that you know needs to be discussed and looked
at as well so ok continue David thank you you you
David Cook
Unverified
45:14
read most of my notes Stephhanie so the but in in it's three years the the the pilot program has done a couple of things that are I
think really significant that would be important for members to understand first of all we set a rural threshold of30%. it's average3 6 % in three years so that means th36% of the funds
are going to underserved communities and and second when you look at the application of the typical caregiver who applies for funds under this grant their household income usually it's around60 to80,000 dollars annually and one of the things we promised the legislature when we asked for this this
appropriation was that we were trying to hit those family members who made too much for Medicaid so they didn't qualify for respite under the waiver services but they did not quite make enough to be able to afford inhome care and I'm happy to report that like 80% of our participants I think it was 81.4% of our participants fall into that income category so we are serving the people that we promise we would serve and that's because of the work of a nonprofit stepping up and doing
more with less and again absorbing those admin costs because the way the state has funded this we've been able to do this work with zero impact on state GSr by the way because this is funded through a federal block grant that we received for the administration of community living in the first two years it was 200,000 this year because of budget cuts that went down to 160 and so the need has continued to grow and and you know the the numbers speak for themselves
just who we who the grant served and the
need is again great in addition to that I mentioned the increase number of support groups always put your phone
Speaker 108
47:10
on vibrate if you're presenting my bed and then on on the
David Cook
Unverified
47:20
dementia training side this will be the last section of the the state report. I think the state's made significant progress in enhancing dementia
training standards across the space care settings of course law enforcement first responder training just enhanced training standards where there was none an assisted living so we've got you know that for entry direct care workers and also that continuing ed requirement that wasn't there before also in in the course of that process we were also able to strengthen the dementia training standards for facilities who may have a memory care or an Alzheimer's special care unit.
we we enhanced that specific pieces of of of dementia training in ther process and then again we were the first state to require home care providers to complete dementia training so that was a huge significant step and and and I wanted to give one more shout out to the the innovative spaces that have grown to again try to recruit more healthcare workers most recently there's the Arkansas Healthcare association's nursing school. I think that's a great innovative approach to help us recruit more
to fill this gap that we
David Cook
Unverified
48:44
healthcare workforce real quick as I transitioned to to the recommendations I didn't want to start by by by just emphasizing the fact is that we are learning more and more around risk reduction the Alzheimer's association just completed a a two year study it took us a little bit longer because of COVID delays but it included over 2000
participants at five different sites across the country and what we really modeled this study after was study that happened in in European countries called the finger study. there's still a worldwide fingers
network that we're a part of and and really specifically we
looked at physical activity nutrition engaging the the the neurological space with neurological exercises health coaching and the cohorts were
were separated into two different groups one had a a more of a self guided clinical trial and so they got the parameters and they were supposed to you know work work on their own and the other cohort was was guided very very intense coaching and what we found was cogni cognition scores actually improved in in both cohorts with only a slight difference in the guided program and so
every participant experienced incredible increase cognition scores several participants I don't have a number but it's a pretty good handful of participants. They also lost a lot during this two year intervention they lost their reason to take diabetic medication. they don't need that anymore they they lost their prescription to blood pressure medicine and don't take that anymore many of them experience weight loss we we are learning more and more
around risk reduction we have made the statement before and the evidence supports it that40% of dementia cases could be reversed by introducing lifestyle interventions so risk reduction is going to be a critical part of our work our work at the association is about people and science our hypothesis was that this this test would or these this study would actually mirror the results that we saw in Europee and that was the case and so
you know it it was a a very strong representation of the American experience. I think there was a representatives for just about every demographic cross racial social economic lines so a very inclusive study we're able to test it on multiple populations and what we we found is by introducing these simple lifestyle changes you can improve cognition, protect your brain health and it's the same things your doctor tells you to do that are good for your heart, what's good for your heart is good for your brain cardiovascular health is is key.
and and that being said that seggues into our conversation around developing a a very robust public health strategy everything that we've been able to advance as a council in this state plan has been done without any state appropriations we had some limited federal funding from the Bold Act but to really move this this work forward especially in public awareness and education I will say that the state is going to spend money
you're either going to spend money on the front end by driving risk reduction early detection diagnosis where care is cheaper or you're gonna continue to drive up the medicaid spin by playing for paying for more costly care settings. I mean that that's the choice that the legislature has in our opinion you know one of the things that we would like to see I guess is a paramount is is the dementia services coordinator be filled we think that piece of infrastructure is critical to ensure collaboration among the state agencies and each state agency has said as much
Representative Julie Mayberry
Unverified
52:47
and David I'm going to stop you right there because Brad and I kind of caught my eye because he knew I was probably gonna bring this up filling in forjay hill today from DHS and you know we we passed legislation in 2023 to create this position dementia services coordinator with DHS and we have yet
to hire someone to fill that position so do you have any update on that? I do madam chair and and I appreciate the opportunity to
Brad Nye
Unverified
53:17
address the committee. I'm pleased to announce that that position had been posted is now closed we have what looks to be a very excellent applicant pool Jay hill and his team reported before today's meeting that they're going through those applicants and they hope to start the interview process early next week. so we we apologize for the delay there was some conversation about moving that position over touaMs we ran into some I think statutory barriers in being authorized to do that so it did
put us a little little behind schedule but but happy that we're we're back on schedule
Representative Julie Mayberry
Unverified
53:52
now. so possibly by the time we meet again
there would be a person who we could introduce in this new role is that correct? I certainly hope that is the case OK,
David Cook
Unverified
54:08
let's hope so thanks for the update we we hope that's the case there there is a dementia services coordinator conference that happens annually in November and if that new person is in
place they would certainly be invited to attend that conference at no cost to the state one of the other pieces again just really securing a state appropriation to help us build and develop and implement a public health strategy the nonprofits are doing all that they can we've we've continued to try to do more with with less and and so a state investment to help us drive public health work would be critical
and we're seeing other states have successes South Carolina's been doing this fort 10 years wi s con s in over 20 other states around us that have had really strong successes and of course just implementing a a simple strategy to protect people's brain health we do it in every other disease space just not in the cognitive decline
space. that is essential to help us drive not only risk reduction but early detection and diagnosis and also making sure that families aren't you
know traveling this journey on their own because no
one should should have to do that accessing and quality of care again
an emphasis on early detection and diagnosis we we it's way past time for our state to establish
a reimbursement for this billing code for our medicaid population especially since our medicaid population qualifies for treatment and you have to catch this disease early in order
you know to qualify for the treatments or those treatments to be viable family caregiver
support I think S stephanie's already emphasized the need but it it's it's past time for us to transition this program from a pilot to a permanent program states like Kansas just established a state appropriation of close to 800,000,750,000 last session for their program Mississippi
State Appropriation is350,000 umarkansas does not have a state appropriation. We are relying on the Ac block grant but that has been cut and our concern is if we don't permanently author ize this through statute is that once that federalb block goes away so does the program and then these families are back where they were before we started this and that is
Speaker 55
56:50
have to say that you gave the best quote
Representative Julie Mayberry
Unverified
56:55
and you just said it probably two minutes ago you said we're going to do more with less there you go
you're gonna do even more with less up here when you said that I went that's his campaign slogan see it was just meant to be it was just meant to be so anyway I read it like he wrote it and that wasn't even planned but see they they're just preparing
you. OK, let's warn doctor Wai yes yes
Speaker 49
57:29
thank you so much Representative mayyrry. I would just like to share with everybody here and whoever you want to share this with and I should have sent a notice to Mr Smith which I will send right after we get back. We here at UMS are offering us free day continuing education course startingoctober 9th through 11th, so that's 9
to11 inoctober at UMS it is free it's three days to talk about cognitive changes with aging to talk about the common conditions that predispose to cognitive impairment to talk about what to do about it, how to diagnose it, how to treat it and then our third day is devoted to caregivers and the support of caregivers and the patient so we want to welcome everybody if you can come even if you can only come for a little bit. it won't hurt and now if you can
tell all your friends and colleagues to come it's free for everybody. The only people we're going to charge are people who are going to ask for continuing medical education credits which you know is us and nobody else needs to ask for that and so it's free
Speaker 49
58:47
the last two days thank you doctor Azar the last two days which is Friday and Saturday October 10th and October 11th are dedicated to cognitive
impairment cognitive de deterioration the diagnosis the treatment and then on the 11th it's all for supporting the caregiver and the patient so I think it's it's going to be very helpful for everybody who can possibly come even for a little bit going to be an online yes we actually do have a thank you for asking Doctor Jordan. we do and it is available as well you just have to
register beforehand but it's free, you know so I think it's all good and the idea is the more we get people to talk about it to to share information about it the more we're going to get support for funding the more we're going to get support from
Representative Julie Mayberry
Unverified
59:52
the legis la ture . well at this time we need
to approve this report I guess so we can be able to meet
our deadline of October 1st and send it on to the house and send it into the governor's office is there a motion to approve this report. Drctor Wei and Stephanie Cook second thank you David, it looks like you're getting ready to say something. Did you have one ok all in favor say aye Anyone opposed? OK thank you we know that's a lot of work that is a lot of work to put all that together so we appreciate your efforts there we'll get this letter off the next thing that we need to do is discuss
future agenda items and as mentioned Do Wei you know was talking about the the new medications doctor Azar and do you think you would be able to help us with the presentation and this is such a huge thing I I can't think of anything bigger in the world of Alzheimer's disease. right now then this medication in my opinion
and there's so much to know and I think we really need to hear from people who are experiencing the changes and the benefits of it and I would make a suggestion again this would be up to the two chairs to decide and figure out a date but it would be great if we involved maybe even like a subcommittee of the health committee and reach out and see if that could be coordinated so we are bringing in more
legislators to hear that because I think they needed to hear that testimony from from them well before another legislative session is that anyone have thoughts on on that great idea Senator Penzo you can help coordinate that. I think Senator Love who just left might also sit on that health committee over in the senate and can kind of coordinate that so obviously that's that's one
and is there are there other topics I thinkerrye Jordan you said you mentioned to me that you had
Speaker 45
1:02:13
a topic you'd like discussed in the near future this is a little
Speaker 44
1:02:18
bit out of the mainstream but it's it's a topic that's come up with one of my caregivers and experience she had in a geriatric psych facility in which she was restricted from being able to see her husband who had dementia.
the restrictions is and this is pretty common in jerry sy facilities visitation is usually restricted to30 minutes a day in some places and there may be rationales for that but in this instance it was very detrimental for both the caregiver and the person with dementia. he ended up coming out comatose and then died a week later so I've been interested in looking at
that topic and I have done some background review of it of you know why are there gerry what what are the the legal requirements you know what are the legal what's the legal rationale for restricting visits and and what are the medical the medical rationale as well. what is the what's the reasoning and and what are the current standards inerry'sy facilities in the state so I personally would be happy to get some information on that topic. look at it and see
if it's I know it in a lot of other facilities you know we used to restrict ICUs we used to restrict visitation and a lot of those have been being removed because there's been a movement in personcented care and they've been thought to be not personcented and I'm just wondering why are they still doing this to someone with dementia who's in a jury psych unit can't have his family come and visit and advocate for them if need be do you agree Doctor Izard good. So so anyway I'd just like to look at the issue and and I
know if we put it on the agenda it'll force me to actually looks you know get into the literature that I've looked up so far and I could present some things. So if if you would like us to put that on the agenda, I would be happy to carry the weight. it would just have to be down the road because I'm not going to be able to get it ready
Representative Julie Mayberry
Unverified
1:04:26
anytime soon. I'm not going to be chair in the future but I'm looking at both of the the future
chairs and they say that sounds great so we'll coordinate and and work on that any other suggested agenda agenda items yes turn in
Speaker 17
1:04:39
you know I'm always suggesting that insurance companies be brought to the table one of the questions that I have and and David maybe this was for you when we were talking about medicaid screening do you know if there's a differentiation between what the qualified health plans that are technically private plans that we do premium subsidy assistance right with the federal state partnership with dollars. Is there a difference in whether those medicaid patients get screened versus fee for service medicaid patients
Speaker 127
1:05:10
I don't know. I couldn't answer that
Speaker 17
1:05:13
today. I'd like to know though. Yes, so my suggestion for a future agenda item would be to bring in some of the predominant insurance carriers and talk about their processes for how they make determinations of coverage for screening versus coverage for treatment versus coverage for drugs and and those kinds of things because patients sometimes get a false expectation based on the fact that they have insurance that everything will be covered without
understanding that insurance coverage varies plan to plan employerbas not employerbased etc and so forth and you know we don't talk about insurance enough in the care coordination for patients and what's permitted and what's not permitted so I would recommend that be an agenda item in the future. so
Speaker 51
1:06:03
moved anybody else doctorzo I have a suggestion actually when David mentioned40% of the dementia can be preventable
brain health Do. Wei is leading a study at UMs called preventable and that is a study that is to
Speaker 49
1:06:22
prevent dementia so Dr. We can talk more about in5 seconds it is the largest study in the world of people75
Speaker 46
1:06:32
years old and older to see whether giving a commonly used medicine against lipid diseases can prevent dementia. I
think it is very worthwhile for everybody to think about it it can only help and this is based on already preliminary data so I'll be glad to present it in two minutes or less next time it's called preventable. Yes, we want to show that dementia can be even more preventable Drctor Amy also I would like for us
Speaker 19
1:07:09
to have on the agenda some of the
national models with dementia such ascms has now have some of the family caregiving education is billableguide models some of these and let's look at how that is potentially impacting our state OK. Brandon's taking all the notes here right OK, any
Representative Julie Mayberry
Unverified
1:07:29
other suggestions and of course you know
at the end of every meeting or you know in the future if there's things that can come up we just wanted to create the idea of what what
do we want to get started with first and and all that any other closing remarks from
Senator Clint Penzo
Unverified
1:07:54
anybody go for it just wanted to say thanks to David Cook. he put in a lot of hard work in during the last legislative session and I appreciate everything you did wish we could have been more successful but with with what Julie mentioned getting the maybe a subcommittee of public health together we can file some of the legislation as
ISps and have formal discussions during the interim leading up to the next legislative session. I think that's going to be helpful Brandon's looking in to see if that's a a feasible option and if it is not sure if we'll use which which subcommittee whichever one's appropriate but the two I think it is is Senator Loven Sen ator e y ton subcommittees and I think they'd both be willing to do that on the senate side and we'll look into the House side and see who that's going to be but I think that'd be a great
idea and we can time it right before a public health meeting anyway and people can come early and visit our subcommittee meeting and try to get more of a robust attendance so hopefully hopefully that'll we can vet some bills before the legislative session that'd be more productive I think so anything else from anybody OK
Speaker 14
1:09:14
you again for your leadership of the committee
Representative Julie Mayberry
Unverified
1:09:20
thank you I appreciate it was a difficult decision to
decide this is why it wasn't talking to decide not to run again and this committee has meant a lot to me as you all know my mom passed January9th of 2023 the day that we were sworn into office so it was a really difficult time in in my life and
she had dementia and so we I know it personally so this has been an important committee for me to be a part of and just because I won't be tearing it doesn't mean that I won't be here so anyway, I appreciate getting to meet all
of you and the many times that they've even reached out and called and asked questions on a personal level on what do I do thank you for being there for for me but you were in great hands and it's important to have someone here who will be here in the next session to be able to champion these bills and
get them across both sides all the way through into the governor's desk to be signed and that's important so and so much of what this committee does too is not just passing a bill but it ' s just education and communicating and hopefully when we meet together we are getting an opportunity to at least exchange some ideas from people who are working on similar ideas you know, similar things at the same time and and do that coordination. so anyway it's been wonderful wonderful working with all of you and I don't think there's
any other business and so we don't normally have a I'm sorry we don't normally have outside you can tell me
Speaker 138
1:11:06
afterwards you're so sweet because your families are sacrificing to allow you
Speaker 139
1:11:12
to help us thank you always at all of
Representative Julie Mayberry
Unverified
1:11:16
our meetings public input is important so ok and if there's no other meeting I say this meeting is adjourned thank you
Agenda
A. Call to Order
B. Introducton of Advisory Council Members
C. Consideraton to Adopt Alzheimer's Disease and Dementa Advisory Council Rules of Procedure [Exhibit C]
D. Consideraton to Approve Minutes from September 24, 2024, Meetng [Exhibit D]
E. Consideraton of a Moton to Authorize the Co-Chairs to Approve Special Expenses Incurred by the Alzheimer's Disease and Dementa Advisory Council
F. Advisory Council 2025 Annual Report [Exhibit F] - David Cook, Director of Government Affairs, Alzheimer's Associaton, Arkansas Chapter
G. Future Discussion of Agenda Items
H. Other Business
I. Adjournment
Note: All exhibits for this meeting are available by electronic means and are accessible on the General Assembly's website at www.arkleg.state.ar.us
Notice: Silence your cell phones. Keep your personal conversations to a minimum. Observe restrictions designating areas as 'Members and Staff Only'.
Documents
Speakers
Representative Julie Mayberry
Unverified
Senator Clint Penzo
Unverified
Representative Les Warren
Unverified
Representative Denise Jones Ennett
Unverified
Speaker 14
Speaker 15
Speaker 17
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Speaker 19
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Speaker 24
Representative Jessie McGruder
Unverified
Senator Fredrick J. Love
Unverified
David Cook
Unverified
Brad Hall
Unverified
Representative Brad Hall
Unverified
Representative Joy Springer
Unverified
Brad Nye
Unverified
Speaker 44
Speaker 45
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Speaker 49
Speaker 51
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Speaker 43
Speaker 50
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