Alzheimer's Disease and Dementia Advisory Council
Video
Transcript
Machine transcript
May contain errors. Verify important quotations against the official video.
About transcript accuracy
- Source
- Whisper
- Model
- ggml-large-v3-turbo.bin RTX5060
- Processing date
- October 5, 2026
Unknown speaker
0:00
Thank you.
You
Thank you.
Thank you.
Thank you.
Thank you.
Thank you.
Thank you.
Senator Clint Penzo
Unverified
4:00
all right we're going to bring this meeting to order first
uh we're going to start with uh introduction of the advisory council members um you want to start over
on this side of the room david
Representative Jeff Wardlaw
Unverified
4:30
David Cook, I'm the State Government Relations Director at the Alzheimer's Association. Hi, I'm Rachel Lund.
Speaker 14
4:39
I'm the Director of the Arkansas Health Care Association, Arkansas People's Living Association, and President of the Arkansas Health Care School of Nursing. Hi, my name is Kimberly Kinder,
Speaker 18
4:50
and I'm the Executive Director of Alzheimer's Arkansas.
Speaker 22
5:00
Jay Hill, Division Director for Aging and Adult Services with
Speaker 25
5:18
the Department of Human Services. I'm Jean Way from the UAMS Institute on Aging.
Speaker 26
5:24
Hi, I'm Jennifer Hallam, I'm the Executive Director of Area Agency on Aging of Western
Speaker 28
5:33
Arkansas. Amy Lee Overton-McCoy, the Director of UMS Centers on Aging.
Speaker 29
5:42
I'm Goha Reza, I'm a Geriatrician and Director of the Memory Clinic at UMS.
Senator Clint Penzo
Unverified
5:55
Department of Health all right thanks everybody and I'm Senator Clint Penzo do the legislative members that are here
Representative Dwight Tosh
Unverified
6:03
want to go ahead and introduce yourself as well I'm Harlan bro state representative
Nick Burks
Unverified
6:19
district 6 my name is Nick Burks I'm the state representative for district 14 which is
Representative Dwight Tosh
Unverified
6:30
Bentonville Centerton I'm Dwight Todd state representative district 38 Jeff
Representative Jeff Wardlaw
Unverified
6:38
Ward law district 94 all right thanks
Senator Clint Penzo
Unverified
6:42
everybody um next item on the agenda is uh consideration to adopt the alzheimer's disease and dementia advisory council rules
and procedures um and that'll be exhibit c okay got a motion in
a second all in favor say aye
opposed okay motion passes uh next would be consideration to approve the minutes from the september 15th 2025 meeting that's exhibit d got a motion and a second all in favor say aye any opposed okay motion motion to prove the minutes passes uh consideration of a motion to authorize the co-chairs to approve special expenses incurred by the alzheimer's disease
and Dementia Advisory Council. Got a motion? Got a second. All in favor say aye. Any opposed? Motion passes. Item F, discussion of the Alzheimer's, Disease, and Dementia Arkansas State Plan. That's Exhibit F, and we'll bring up David Cook to go over that for us.
David Cook
Unverified
8:18
Thank you, Mr. Chair, and thank you to our council members for coming today. I know the summertime is kind of tough on everybody, so thank you for making the time. And I also want to thank all of the members of our assembly that are here today, our house members that come to pay more attention to this issue as it's a growing issue here in our state. What I wanted to do first is just to remind you that we are up against the deadline to authorize a brand new Alzheimer's state plan by October.
And so today I wanted to share just a little bit about what we were able to accomplish through the first state plan, some of the changes that have been made. But I also wanted to talk a little bit about what has happened in the research space over the last four years, because where we are in terms of diagnostics, research, treatments, care and support is dramatically different than where we were when we started this work in 2018. I know Rachel remembers those days over at the AHCA building, just working through things,
but we're in just a much different space, and I think our state plan should reflect that, and so we'll talk a little bit about that today as we go forward. If there are any kind of questions as we go through the presentation, please feel free to stop me, and then we'll have that discussion as well. This was the facts and figures report that we released, the Alzheimer's Association releases every year around March, where we talk about some of the national prevalence, and of course we also provide some of the state-specific prevalence that we'll talk about today.
But what we do know that there's over 7 million Americans currently living with Alzheimer's disease, and if we do not get ahead of the disease curve, By 2050, that number will look closer to $14 million. It is also the most expensive disease to treat, costing our economy $409 billion. And what we've seen in trends between 2000 and 2024, while deaths from other chronic conditions such as heart disease and diabetes have decreased,
deaths as a result of Alzheimer's disease have been on the upswing by over 134%. as we've always talked about here and reserve space for when someone receives a diagnosis of Alzheimer's it's not just the patient that's impacted but family caregivers and caregivers play a significant role in the support and delivery of health care for those living with chronic conditions including Alzheimer's and dementia but specifically in 2025 the association
estimated there were over 19 billion hours of unpaid care delivered by family caregivers at a cost savings of $446 billion to the U.S. government. Here in Arkansas, our prevalence is held at 60,400. Of course, this was based off of a population study we did in 2020 after the census. I do expect that the association will do another one when we do another census in 2030, if we don't follow other states and do one halfway through the beginning.
But when we look at state prevalence, basically the state average is 11% of adults over the age of 65 are living with Alzheimer's disease. It's very important to note that these figures do not include those individuals who may be living with another form of dementia. and you know we know there's various types of dementia of course vascular frontal temporal dementia with Lewy bodies Alzheimer's of course is the leading cause of dementia so this number
does not include those individuals with other forms of dementia it also doesn't include those individuals who may be under the age of 65 living with a younger onset diagnosis of Alzheimer's which also is a rising number that we're seeing. In terms of caregiving numbers, again, based on population studies, over 175,000 Arkansans provided over 268 million hours of unpaid care for family members living with dementia,
which is a contribution to the state valued at $5 billion in 2025. five we see the weight that caregivers are you know feeling it is another thing that has changed since we did this first report is I'm now feeling this with my father who recently had to go to long-term care living with frontal temporal dementia and so the weight that it's been on our family just in the transition has been even though you advocate for this you can't be you
know objective when it comes to your father but it certainly has been something i felt the last few months just the weight of having to make these decisions another thing that i noticed is you know my dad's in the va health system if if my mom and i would have had a little bit more support services in our rural county we may be able to kept dad at home a little bit longer but because of that we we had to play some mom just couldn't handle it anymore and again people make those decisions all the time across our state. I do want to talk about how advancements in research now are driving
dementia policy across the country. I didn't, in respect for your time, didn't pull out state examples, but I can have those in the future. But just I want to talk briefly about what has changed in the space and how that should impact our state plan going forward. since our last state plan you know when we first started this work physicians here in Arkansas were dependent on either pulling cerebral spinal fluid or referring their patients out of state to
get amyloid PET scans that's no longer an issue here in Arkansas we we now have oncology clinics providing amyloid PET but that's happened because of the revolution or the advancements in research and being able to treat this disease. Research has also allowed physicians to detect this disease earlier and less expensive. We now have blood tests that are being used in specialty clinics as a triage to qualify patients for treatment.
The first generation of these blood-based biomarkers, we're only picking up one of those proteins, which is the amyloid tau protein. We know there's two proteins active with Alzheimer's disease, the amyloid and the tau. And because the treatments were only treating the amyloid buildup, we have blood tests on the market pretty rapidly to detect for the amyloid, but now we have amyloid and tau blood tests that are out and being readily used across the state. Those blood-based biomarker tests have now been deployed in the primary care setting as well, and so because of that, those are great advancements.
It's great to have a blood-based biomarker that can begin the process of a diagnostic for a patient. It's a lot less expensive, a lot less intrusive. But what the problem is is are we sure that everybody has access to that in terms of insurance? Another issue that the association is concerned about is we do deploy this to the primary care space. Our primary care physicians and APRNs educated to know how to use this, when to utilize it, when to refer a patient out. And so there's a lot of work to be done in this space as well.
The other advancement that's been major is, of course, treatments. For the very first time in human history, we actually have treatments out that are specifically slowing the progression of Alzheimer's disease. UAMS is prescribing both Likimbi and Kisunla. Now, is that correct, Dr. Wei? No, you guys were close. Okay. and so the second drug has now hit the market here in Arkansas and from the clinician community
there's a lot more excitement over denanumab the second drug than the first because of risk mitigation and other things but we hear from patients across the state often we have a really strong success story out of Conway coach Daniels that some of you met last session who was a teacher here in the public schools for years, but he's had tremendous success with this treatment. There are some outliers outliers out there, but the majority of responses that we've heard from families
and patients have been very positive. But most of all, this again is not a cure. It only promises more time to spend time with loved ones, more time to watch graduations. Hopefully one day I work myself out of a job because we've cured this thing because it is an awful disease. But clinicians now can give patients hope, which is something they didn't have before. In addition to amyloid and tau in the research space,
we do know that there's a lot of research development happening, looking at other types of biomarkers to kind of understand inflammation, vascular-related changes. I do want you to know the association does lead the Global Biomarker Standardized Consortium. I never can say that word. But we're trying to standardize the practice of the use of biomarkers across populations. And, again, as I mentioned, as the biomarkers reach the PCP space, doing some education,
making sure that those providers know how to use the blood test, when to use it, when to consult, want to refer a patient out as well. So, you know, one thing I have learned over the last few years, we've done a lot of community forums in different parts of the state, and the clinicians and the physicians that are connected to major health systems, they usually have access to the research and the data and the guidance, the best practice guidelines, not only for blood-based biomarkers and diagnostics,
but also the best practice guidelines to utilize treatments. how to mitigate against those risks that are out there. But the physicians that are not connected to those health systems that are out here in the rural areas, those are the ones that do concern us that are out here trying to figure it out. And also here in Arkansas, as other states have done, we've expanded the scope of APRNs. And so they're filling some of those gaps that where we don't have a PCP. And when we've done presentations in rural communities, I'll pick on my county because
it's in Van Buren County, where I'm from. Typically, when we do these, we try to recruit a local physician to come in and talk about his treatment of older adults. How does he screen for dementia or she screen for dementia? When do they refer out? Those kind of things, treatment of dementia. And we did one a couple of summers ago when Likimby was out, and there was a lot of talk about the nanomab. And we used two of our local physicians, and neither of them actually knew there were treatments available um and and when they gave their presentation they said unfortunately
there's no treatment so we usually prescribe ariceptans in a patient home um but they didn't have uh any clue and it's not the physician's fault because they're overloaded and they have a heavy rural practice but how do we get information to those providers who are out here trying to figure it out when the majority of our patients um that that pcp office is their first touch and so it's going to be incredibly important for us to create an infrastructure or a network to provide support to these rural providers and that's something that we certainly need to address
in the upcoming state plan how do we make sure that clinicians understand not only the availability of treatments but not just clinicians but the general population how do they know that these tests and diagnostics are available and again it's great it's amazing development to have research progressing at this rate it's a very exciting time to work on this disease but treatments and diagnostics the availability of them are great
but if you don't have access to them by insurance then what use are they we are excited to report that we did realize recently Blue Cross and Blue Shield of Arkansas has finally decided to cover uh denanimab casunla the second treatment um i don't understand why they haven't covered lakimbi because the science hasn't changed but um they are covering denanimab which is really exciting it opens up the door for access to patients across the state of arkansas what i am
sure on what i'm unsure about right now is whether or not that coverage determination of blue cross and blue shield has any impact on the state employee benefits um since blue cross is the cover of that. I do have a question out to Grant Wallace to try to get that confirmed, whether or not that coverage decision kind of helps state employees, which is something we advocated for in 2025. Any questions on that before I go to what I'm really
excited about talking about next? You've heard us talk about
Pointer for the last two or three years, we did get results last year. And what the pointer results showed us is that there are some things that we can do to help diminish our risk of developing dementia or Alzheimer's. And these risks, the things that we can do to reduce our risk are risk reduction across the lifespan. When we've typically talked about Alzheimer's and dementia, we've reserved
that for aging populations, and that's not something that we can afford to do anymore. There's some things we can do to mitigate our risk across the lifespan, not only for Alzheimer's, dementia, but of course, as you know, for other types of chronic conditions. And what we have learned is that the same things that people are doing to reduce their risk of heart disease, the same things we do to reduce our risk of dementia. But what U.S. Pointer tested for us is we tested two cohorts of people. One was in a guided group. The other one was more self-guided.
And we tested physical exercise, nutrition, cognitive and social engagement, and some direct, you know, health coaching, just making sure people had, you know, basic health coaching, exercise, those kind of things. The two cohorts, as when they finished up, there was roughly 2,000 participants in each cohort. what we found is that all of the participants regardless if they were in the guided or the
non-guided program they began to test and perform cognitively as if they were someone one or two years younger than their actual age and so it had a significant impact on their their cognition scores and so risk reduction in brain health is is something that and the way we've talked about risk and Alzheimer's has changed, as we've learned more through this research. But the Pointer study, to me, was one of the most significant ones on risk here domestically,
because as you look at the participants in the disease trial, there were individuals from every walk of life, different socioeconomic status, different levels of risk. It was a snapshot of the American experience, a very well-rounded group, so it means we tested on different demographics, different backgrounds, and people performed the same. This is just like the study they did in the European countries called the Five Finger Study, and the results we saw from them, of course, influenced our decision to fund the
U.S. Pointer Study. What the association is doing next is translating Pointer into really a nationwide prescription for brain health. And we are talking more about brain health and risk reduction than we ever have before. We are continuing to follow these participants. We also are doing a lot of personal brain health assessments. We have a program out now where you can get an app on your phone, kind of get all of our information.
But you can also do a brain health score, a personal brain health score. and it'll provide you some feedback, some things that you can do to, again, reduce your risk. One of the other issues that we have recently launched is also brain health in the workplace, just trying to support businesses to be able to introduce brain healthy habits for their employees. Not only does it impact those individuals who are working, but some of those individuals in the workplace are also caregivers,
and so they have to take off time for work. And so trying to just give businesses more opportunities to support their workers who are dealing with this issue. Also, I want to talk about just the importance of using that term brain health and risk reduction. One of the things that we've combated in this disease space is still that stigma that's attached to our disease. It's still sort of a backroom conversation, and we're trying to bring that into the front room like we've done in mental health.
And I know I've talked about that forever. You've probably heard me say that multiple times. And so we're talking a lot more about brain health. It kind of normalizes the conversation. Alzheimer's and dementia is kind of a buzzword, but we talk about how to improve your brain health. It's a little less aggressive, and the reception's been really positive. And so we would like to see that built into the next iteration of the state plan. So in terms of risk, early detection, diagnosis, and treatment, those are the major things that we've seen develop in research.
Of course, there's other things happening in the research space because it's accelerating so quickly, which is very exciting. Now, I want to talk about just what we've done over the last four years together with your support, certainly indebted to all of you who've kind of helped spearhead some of this and the support that you've given us through different policy initiatives throughout the state. we've done a lot to improve the state health the state infrastructure to address alzheimer's
disease we are ahead of some of our neighboring states in terms of having an organized alzheimer's disease advisory council which is very significant also having what we've noticed as we've gotten statutory authority for this council more legislative input of course non-members attending learning more because it's impacting most of you you've you've lived this yourself we've established dementia services coordinator and i'm so excited to announce that she's here naomi atkinson who has hit the ground running she's been amazing and so we're real excited to
have her on board and just being able to work with her to move some of these priorities forward as well of course we received the the bold grants in 2022 there's been increased community sponsorships outside of legislation, lots of programming happening. One of the most significant programs we just recently launched is a partnership with the UAMS Centers on Aging. This collaboration is being piloted out of Northwest Arkansas in the Schmieding Center, and what we're doing is we created
a dementia resource center where the goal of this is to have a one-stop place where families can come in who are struggling or may have, you know, providing care for someone with living dementia, and they can get access to resources that are available in their community. There's care navigation that we're hoping to build into that as well, a pathway to a diagnosis. They also, because the Schmieding Center and the Centers on Aging are so uniquely equipped, they do a lot of work around just healthy aging, around diet and exercise.
And so they're a natural partner, a collaborator of ours, And our hope of this pilot is to expand this across the state of Arkansas and to create a model that can be in community so that people can go to these resource centers and find the help that they need, find the navigation and know where to start. It is something that many of the legislators have asked us for. A one-stop shop has been the phrase that's been hit to me because people don't know where to go. And so if we can replicate this model, other states have been very successful in establishing these centers to just help people navigate the health care system, navigate from diagnosis, preclinical diagnosis to diagnosis through all stages of the disease process, because as the disease progresses, the needs of the families change.
And so that's the idea is to create more access points for help and support for families who are out here trying to figure this out. And then another significant piece that the council has put in place is just by prioritizing family caregivers, creating the Dementia Respite Grant Program. We'd certainly like to see more funding added to this. We're at $200,000. We've been kind of stuck there. So we'd like to see this increase. We have Kimberly here, who's the executive director of Alzheimer's Arkansas.
They've done a great job administering this grant program. They keep telling us they need more money because they can get it out, and they've done a great job doing that. In terms of workforce development, that was one piece, you know, strength and dimension training care standards in ALFs, and the ASCUs, the Alzheimer's Special Care Units, became the first state in the country to have home care provider training mandated And then, you know, having APS, state ombudsman, now at DHS, all doing dementia training for their staff as well.
And then Representative Tosh was in here earlier, but he helped us with getting the law enforcement and first responder training established. I was going to say something about that, extra about that. And the other thing, in addition to workforce, that has been really encouraging to see is the work that Rachel has done at the Arkansas Health Care Association just with the nursing school. I think that's huge for just the workforce shortages we have across the state. So thank you guys for all the work you're doing in that space as well.
All right. Any questions before we go to the next one? So based on all of that, you know, our previous priority areas were, again, family caregiver support we looked we looked at access and quality of care we also talked about public awareness and education and and then of course the family caregiver support piece what we would like to propose is this outline for the state plan going forward for the next four
years these are the four areas that we think best reflect what's happening in the research space and also the opportunities that we see states taking advantage of. But instead of public awareness education, we would like to reframe that as saying advancing risk reduction, brain health, early detection and diagnosis, just really focusing on not only what happens after a diagnosis, but also focusing on prevention, risk reduction, early detection, diagnosis,
and, of course, providing care planning services for families who are impacted by this disease. I think we need to strengthen our family caregiver support as they become more prevalent here across the state. As disease prevalence climbs, there will be more and more family caregivers. And so under this section, just looking at how do we enhance community-based support for family caregivers, which, of course, would bring in that respite work and a variety of the services that we could implement. the third piece is in making sure that there's access to diagnostics and treatment just making
sure that arkansas is prepared for what's happening in the treatment landscape as it change it changes making sure we're addressing fda approved diagnostics and treatments making sure there's insurance coverage in place so that families can access these things and benefit from the research that's happening in our space. And then finally, I would say just supporting access and quality of care, working with our long-term care partners, our HCBS providers, making sure
access is there. How do we support quality care and long-term care? Workforce training would kind of fall under that. And then also just making sure we have a robust crisis response system for families who, you know, maybe individuals who wander or have elopement risk. How do we make sure that you know we're supporting families in those those tragedy areas as well so those are the four areas that we the association would would kind of present to you as the general outline for
the the next version of the state plan that makes it very consistent what's happening again in the space that we're seeing
Speaker 25
34:14
right now so happy to take any questions your comprehensive presentation and summarization you had mentioned that there were primary care physicians in rural Arkansas who were not aware that we had new therapeutic modalities for the patients
and these are the doctors who would have prescribed the treatment and they were not aware. Can you comment on that a little bit
David Cook
Unverified
34:46
more? Yeah, there were two cases. One happened in South Arkansas, and it was, I think, around the Magnolia area. We did a community forum down there, and there was physicians there. And, of course, my physicians in my community just did not know because they're not connected to major health systems, And so they just weren't aware of some of the recent developments.
And, you know, they've become aware of the blood-based biomarkers. This was a summer ago. But that was kind of the first thing that kind of was a red flag to me. And it got me thinking that, you know, these loosely connected physicians just don't know. And how do we reach them? Whether it's expanding Project ECHO in that space. I know there's some federal legislation moving right now that would kind of create that infrastructure piece for rural providers to give them a support, you know, a support system.
One of the things the state has done really well is in stroke mitigation because these rural facilities have access to those specialists. And so, you know, there's states like Georgia and Tennessee who've created sort of memory net. And it's a, let's say, like a hub spoke model where you have specialists that reach out to some of these rural providers. So they have a support network to consult on cases and also an education resource as well. So there's some possible solutions out there.
It just made me think that those can't be the only two. You know, how do these – the patient load is so high. And it's not a knock against the docs. They've got so many patients. They're doing the best they can. But, you know, how can they keep up with all the billing codes, those kind of things. And so how do we get information to them? Are
both of those doctors from Southern Arkansas? No, one was North
Speaker 67
36:39
Central and then another South Arkansas. Okay, so we kind of need to somehow figure out a little bit more effort.
David Cook
Unverified
36:46
Yeah. Yeah. There are solutions there, I think, and MemoryNet has worked good in some spaces. That's something I'll pitch later on, not today. Thank you.
Speaker 26
37:03
Good. Sorry, I have a piece of gum in my mouth. I'm sorry. You can't chew gum? Yeah, I can't. I can't. Same time? No, I can't. um i think one of the things that i am um mindful that we should do or that we should think about
is to um just really go heavy in publicizing the things that like exercise the mind diet there are still people that don't know what that is i know what it is and other people in this industry might, but there's a lot going on just with diet and exercise that could really change the trajectory. For me, I'm very passionate about this because I had two of my relatives have
Alzheimer's, but when I saw the article in the Arkansas Democrat about Dr. Michelle Gray, I called her on the phone and she answered, and she walked me through it all, and it's very, very exciting I know we all know to exercise but if you really put it like this could really change the outlook of your life and all the things that could be we somehow we've got to get that out to the general public and not just people that are already trying to find a solution that are in
health care that are maybe have a loved one that you think is could be susceptible if we made that more front of mind every time someone turned around as far as doctors I would say this for me even when I go to try to read medical things it's difficult and it's a lot so if we could just get it like let's get the highlights and then if you want more information like that and I'm sure we're doing that I just think we all are interested in
Speaker 77
38:53
it but the whole state needs to be interested
David Cook
Unverified
38:57
so how do we do that yeah I think that's one of the reasons why I think it's important to just pull that this advancing risk reduction piece out so we can figure some of those strategies out a lot of it can be done at low cost to the state because the resources are already there just disseminating them and you know Senator Penzo representative Warren knows we've done this budget friendly um because we we haven't gotten any money yet but you know it's just we
try to be budget friendly on it but there's ways we can do this less expensive just to get things out but another thing that that that we've been working on is you know we are members of the chronic disease council and one of the things that we've talked about as you know other individuals professionals working on chronic disease is that risk mitigation for diabetes heart disease is the same as Alzheimer's right and so how do we partner together as different uh chronic diseases to to disseminate some of this education so we're working on some of those strategies through the the chronic
disease um state plan and very thankful for Dr. Bala and his leadership trying to get that together so there's other things that we are doing to try to try to figure out how
Speaker 26
40:14
to and I think you hit it we all need to collaborate yes collaboration that's that that's where it's gonna that would be very affordable so i'm going to come over there and talk to you okay um but all of us here to collaborate together and and
Speaker 83
40:30
preach the same message over and over some of that collaborations happened organically over time but um that
David Cook
Unverified
40:35
was one of the the heartbeats i guess you'd say
around the the council is that we we were all doing good work in silos and not really knowing what the other one was doing and once we started having those conversations a lot of exciting things have happened so that's been really
Representative Les Warren
Unverified
40:59
good on the programmatic side first of all my apologies for uh being late uh i've been up in my office reading stuff on alzheimer's but i'm used to 130 meetings for uh the afternoon but anyway uh i'm glad to
see everyone and a couple of things uh so i'm good friends with betsy broles from my college days but do you collaborate with the broles foundation yeah um well we've noticed the last few years they're not as
Speaker 52
41:30
active as they once were and so we we've we've tried to do
David Cook
Unverified
41:34
some outreach with them um they do have a spot on the council um but i'm not really engaged um
Speaker 64
41:42
but i'm going to talk to about that so we have we've tried to
Representative Les Warren
Unverified
41:46
collaborate with them in the past what other leading alzheimer's
groups in the state do we have that just
David Cook
Unverified
41:54
focus on alzheimer's or dementia um it would be the alzheimer's association and then alzheimer's arkansas um so that's the three that's the yeah the big the big three okay so and then in texter canada there's alzheimer's alliance okay in south arkansas yeah
Representative Les Warren
Unverified
42:13
okay so i remember back um representative charlene fight went down and
we were having a an alzheimer's recognition day at the capitol and i couldn't help it i went down and said would everybody in the house chamber who's been either had a family member or close friend affected by Alzheimer's please stand and it was almost 90% of the chamber and I've got to say that I think the numbers are increasing and I would defer to you Dr. Wei but I think and I think I mean every time I turn around
around I'm seeing more people who have a parent a sibling or someone diagnosed either with Alzheimer's or dementia it it is overwhelming to me the number of cases that I'm seeing and of course I'm not as young as I once used to be but yes you are close to you know I'm seeing more people close to my age now yes and it just I'm like that's not just the norm anymore
it's increasing and I and I really I feel like that we've got to recognize the increase in what's happening with funding with our approach I mean and it's it's not the fact that the doctors don't want to properly diagnose and treat. And I know that we had a bill come through about a new drug.
It was a pretty expensive drug in the last session. But I'd love to maybe at our next meeting have the latest advances in medical treatment, what's out there, you know what the cost is right now is it going to be coming down where are we heading with the treatment medically and of course Miss Hallam just alluded
some other treatments but I mean I'm all for getting everything we can out to the state and i think you get a lot more attached when you have someone that you watch die from it so i want to see what we can do to get more information out there and
and help the caregivers and the families going through this yeah um it
David Cook
Unverified
45:11
it you know the the two main treatments were looking at mab and then
Casunla which just hit the pipeline those those are the two that are we can talk more about this at our next meeting but what I did want to mention is that there's a phase three trial right now that their taste they're testing lakinumab one of these anti-amyloid treatments on individuals who have tested positive for amyloid but are pre-clinical so they don't show any symptoms asymptomatic not pre-clinical but and whether or not giving a different dose to those individuals who are asymptomatic but still have amyloid can be a preventative.
And if we can get to start using the P word, that is huge for us. So there's a lot of stuff happening, bubbling
Representative Les Warren
Unverified
46:00
in research right now that is going to be very exciting
in the next few years, I believe. Well, and one more comment. I know that this seems to be about the size of the group that we have when we meet. And I know that when I've been looking at the composition of our council, we set it up very strictly, appointments from different organizations, appointments for Department of Health.
I mean, but it's very specific who's on the council, and I think we are at a point, we're far enough down the line where we need to find out, are you not going to send someone for your spot? And if not, we need to amend the piece of legislation that created this so that we get people who are active with this who actually care about what's happening.
And I'm not saying they don't care, but if they're not going to have someone, we need to look at amending this so that we get people who really do want to see something happen with Alzheimer's. Yes, sir. I
Speaker 96
47:22
would be happy to work with you on that. I would like to introduce myself again as the executive director of
Speaker 18
47:28
Alzheimer's Arkansas and what I would like to to say to the group is many of the things that have been mentioned is what we have the framework and the groundwork for we do caregiver educations we call them caregiver
workshops we have doctors speak we have people speak about all kinds of things but they're all planning for the most part so part of the problem is no one's planning before the diagnosis happens many many people are in the sandwich generation of their parents getting diagnosed and they still have children at home or children in college that is the where we work every day but that's the framework of what we do we administer the grant because most of these people need help they need respite from being a caregiver but much of what we do is education boots on the ground
and what we need is partnership with other people to provide that education and we go to every county that we have the ability to but being able to expand that will require you know employees funding all of those things I would love for that to be considered the funding that's needed to do that sort of work it doesn't have to be a large amount of money but there has to be some way to pay for someone to go and do that work and have those educators out there thank you
Senator Clint Penzo
Unverified
48:46
anybody else got any questions for mr.
Speaker 101
48:53
if anybody could hear me i'm i'm virtually i'm remoting in so i apologize for not not being there i have a question for So, David, regarding the BOLD funding, is this money still available nationally, and then is there any plans, or
Speaker 99
49:12
should we make plans to reapply for the funding?
David Cook
Unverified
49:18
Yes, so Congress is continuing to increase the funding for BOLD over the last few years.
I think it's up to $35 million. Arkansas did qualify for core capacity and is probably ready because of the work that we've done for the next phase, but it has been a very competitive grant, but we are happy to work with our partners at the health department and DHS to reapply for some of that. I think that would be helpful. One of the other things that we have done as an association is applied for three different buckets of money
that's become available under the Rural Health Transformation Act. And so we are working on trying to secure some of those funds to pull down. Other states have been able to pull down some Fed funds for, you know, some of the Maha initiatives and move some things under Louisiana just did that. So there are some other federal pockets of money besides the BOLD, but BOLD still is there as providing this federal funding stream back to the states.
so yes there's there's still money out available and we advocate for that increase every year
I didn't know where to look that way
Speaker 106
50:39
for the question okay so thank you for the presentation I have a question about infusions so when people get diagnosed and they can get diagnosed at other facilities just by getting a P-tau. The bottlenecks are getting the amyloid PET
because we don't have them everywhere. We have it at UMS now, thankfully. We have it at Texarkana. We have it at a few places. But even when they get that, then there are very few places where the doctors with expertise or even the confidence to give the infusions. So that is actually where the bottleneck is. We have even our infusion centers, the cancer infusion centers, they are swamped.
We are going from one infusion center to another infusion center to another infusion center because they have a lot of cancer patients. So this problem, as more diagnostics occur around the state, more people are diagnosed early on, which hopefully will occur, because we are diagnosing people. So there are two issues. One is the infusion center. One is the dearth of doctors with expertise who will prescribe those infusions and monitor these patients
because the risk can be pretty high from, you know, strokes and seizing disorders and things like that. So those are the two issues. We have appointments that are going into next year. We have a backlog of appointments for people with memory disorders here, even at UMS, that are in 2027. By 2027, these people will deteriorate. So that is one of the issues that we have.
There's not enough expertise. There's not enough
David Cook
Unverified
52:34
trained people. And that issue is what we're hearing nationwide. It's not unique to Arkansas. I think
some of the rural states are having the same kind of issues. It's, unfortunately, you can't legislate more gerontologists and memory specialists. We do have a shortage here in Arkansas specifically, and I think we need to explore strategies.
How do we increase those access points for people?
Speaker 107
53:02
these physicians can train the APNs to do this work or
Speaker 106
53:17
the PAs to do this work at least follow the patients then they can see the new patients or the new concerns but if we can just hire more APNs who are interested in memory care and train them, then the patient load and the
wait time, the lack time, will not be eight months, one year. By that time, people become ineligible for treatment. They've deteriorated so much that we can no longer offer this treatment, so it is a very sad case.
David Cook
Unverified
53:56
The windows is really, from diagnostic to get on treatment, is very, very tight. That's why I think why some of the specialty clinics moved to use that blood-based biomarker as a triage to fast-track the diagnostic.
Speaker 106
54:08
We can't fast-track because we don't have anyone. We are so overwhelmed. So we have been able to
convince our service line to hire a new APN. But we need more funding even from outside, from private sources from other places to hire mid-level providers that will
Speaker 111
54:28
help us reduce this backlog. And that's
David Cook
Unverified
54:36
about releasing the blood-based biomarkers to the PCP space is creating further backlog, especially if the PCP doesn't understand when to order the blood test.
And, you know, there was some advice going around the state that everybody should get a blood test, and that's not how it works.
Speaker 111
54:56
There are also caveats because, you know, the blood-based biomarker, even if
Speaker 106
55:01
it's positive, can be falsely positive because of kidney disease, because of age, because of other pathologies. So it's not as simple as just, oh, yeah, this is a positive and this is really positive. You know, it may be falsely positive, and then you start someone on treatment. and I actually disagree with some of the providers out there
who are treating only based on blood-based biomarkers because that's hazardous. We have done blood-based biomarkers which are positive, high, and then we have done the amyloid PET scan that is negative. So the person does not actually have Alzheimer's, so why should they be treated? Correct. So just treating on the basis of blood-based biomarker is not correct. No, I agree. I
David Cook
Unverified
55:47
think you, well, I'm not a gerontologist or neurologist. I've never played one on TV.
But you'd want to see that full panel just to make sure the memory concerns were there. Because I do agree there's different reasons why an amyloid could be elevated. You know, it could be a cardiac issue. And that's why I think that clinician education piece is so important. And just getting a consult in place, those kind of things. But, yes, I'm happy to explore some of that offline some
more with you, too. because I'd love to hear your perspective on a couple of other things, too.
Senator Clint Penzo
Unverified
56:25
Any other questions for Mr. Cook? Okay.
Speaker 25
56:35
David, I applaud you and admire you for all the things that you've said and how you've kept all of us updated. I think this is so important, and there is so much more that we need to do. I think if there's any way that you can think that we might be able to help you, that would be great. I think it's time, just like Jennifer here stated, we need to collaborate more.
I think we have to. So you let us know.
David Cook
Unverified
57:05
Dr. Way, I'm glad you asked that question. As we kind of prepare for this state plan piece, I'm definitely going to lean on your help and expertise. um i i don't want to exist on an island and do this work alone or do you need your help and your feedback um there's a lot of bright minds in this room um and and so i would love to you know have deeper collaboration especially now's the time as we kind of figure out this next phase of the state plan thank you thank you
Senator Clint Penzo
Unverified
57:33
do you have anything else to add for the state plan or should we move on to future meeting
David Cook
Unverified
57:46
agenda items um it it would be good for us to approve this these four categories as the outline for
our state plan that would help expedite some of this work so i could get at least started on the general outline um for upcoming meetings but i think we need to approve that at first
Senator Clint Penzo
Unverified
58:04
as we so you made a motion to approve that okay second okay all in favor say
aye aye opposed okay motion passes all right
so um as far as future agenda items um something that was brought up by miss hallam um i think that an exercise is huge and can be a solution for a lot of uh medical issues in our society um i'd like to chat with you uh about the dr michelle gray i'm
not sure i'm familiar with with that but uh that might be something we may want to consider for if she'd be willing to come speak okay okay um yeah anything to do with any kind of new drugs that's something that Les and I were discussing so we'll work on maybe having somebody come give an overview of some some research or anything like that also
Miss Bunch has a new nursing school where they're doing some workforce training we may have her discuss some of what they're doing at their new nursing school is there anything else that we would want to discuss besides the state plan and and those items okay so we're going to talk about some legislative changes as well to the existing statute as far as
days um uh representative warren and i were discussing um potential days for our next meeting we're going to try to do a meeting in august and then maybe two in september if we can squeeze them in in august we were looking at august 12th 13th 19th or 20th august 12th we were discussing maybe the idea of doing something in hot springs at the association of counties i don't know if that's too
difficult for some of the members of the committee to go to hot springs might be good for exposure to do something on the 12th there at the arkansas association of counties annual meeting the 13th we'll be back in little rock here for that's an audit week we were looking at maybe a 3 p.m. meeting on the 13th august 19th and 20th that's alc week so we would have to get approval
from council the chairs of alc and maybe even the president pro tem and the speaker of the house for those days but i don't know if there's any input from the members that are here on those dates if any of those would work or preferences would would there be objections to doing something in hot springs okay okay though i mean because there'll be there'll be a lot of there'll be a
lot of exposure okay okay well we might might consider uh that date then on the on the 12th i know that there's a uh city county local meeting there there'll be legislators in town will also be county officials gathered from all over the state there so it might be a good opportunity to do some networking with with some people outside of the capitol so um sounds like there's some excitement around the 12th so um we'll pursue that and see if there's any issues
with that but we'll we'll shoot for uh the 12th i think the current meeting on the 12th is it uh maybe 1
Speaker 21
1:02:08
30. let me double check real quick well i guess we can get back with
Senator Clint Penzo
Unverified
1:02:18
the time uh once we get everything finalized but i think there's a city county local meeting there at 1 30 or 3 o'clock i don't remember which one it is
but we can probably work around that and we'll shoot for august 12th and hot springs we'll get an email sent out to confirm that if everything works out does anybody have any anything else to add any other business okay there's no other business we'll go ahead and adjourn thank thank you everybody
Agenda
A. Call to Order
B. Introduction of Advisory Council Members
C. Consideration to Adopt Alzheimer's Disease and Dementia Advisory Council Rules of Procedure [Exhibit C]
D. Consideration to Approve Minutes from September 15, 2025, Meeting [Exhibit D]
E. Consideration of a Motion to Authorize the Co-Chairs to Approve Special Expenses Incurred by the Alzheimer's Disease and Dementia Advisory Council
F. Discussion of the Alzheimer’s Disease and Dementia Arkansas State Plan [Exhibit F]
G. Discussion of Future Agenda Items and Meeting Dates
H. Other Business
I. Adjournment
Documents
No documents posted.
Speakers
Senator Clint Penzo
Unverified
Representative Jeff Wardlaw
Unverified
Speaker 14
Speaker 18
Speaker 22
Speaker 25
Speaker 26
Speaker 28
Speaker 29
Speaker 30
Representative Dwight Tosh
Unverified
Nick Burks
Unverified
David Cook
Unverified
Speaker 67
Speaker 77
Speaker 83
Representative Les Warren
Unverified
Speaker 52
Speaker 64
Speaker 96
Speaker 99
Speaker 101
Speaker 103
Speaker 106
Speaker 107
Speaker 111
Speaker 73
Speaker 21