On this episode we dive into the remarkable progress in the diagnosis and treatment of Alzheimer’s disease and get perspective from a neurologist, two legislators and a policy expert from the Alzheimer’s Association.
Alzheimer’s disease affects a significant number of Americans over 65—more than 7 million—and is the sixth leading cause of death in that age group. It’s expected that more than 13 million people will be diagnosed by 2060. Beyond Alzheimer's, roughly 10% of U.S. adults over 65 have dementia.
On this podcast we talked with Dr. Ronald Petersen, a neurologist at the Mayo Clinic and an expert in Alzheimer’s disease and other cognitive disorders, and Jennifer Rosen, vice president for state affairs at the Alzheimer’s Association. Joining the podcast to offer the legislative perspective were Senator Laura Murphy of Illinois, a Democrat, and Senator T.J. Shope of Arizona, a Republican.
Dr Petersen explained the remarkable progress that has been made in recent years in the diagnosis and treatment of Alzheimer’s and the importance of early intervention. Rosen outlined the enormous financial impact of the disease on society, and the role state legislatures can play in supporting early detection and treatment.
Senators Shope and Murphy each laid out the legislation enacted in their states and how that legislation will aid both people with the disease and their families.
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ES: (00:00:12):
Hello and welcome to “Our American States,” a podcast from the National Conference and State Legislatures. I'm your host, Ed Smith.
JR: (00:00:21):
Looking at the health and long-term care costs for people living with Alzheimer's and other dementia, that's projected to reach about 384 billion with a B billion dollars. And that's not including the value of unpaid caregiving, which is valued to be around $413 billion. Medicare and Medicaid are expected to cover $246 billion of that total cost I just referenced.
ES: (00:00:46):
That was Jennifer Rosen, vice president for state affairs at the Alzheimer's Association, and one of my guests on this podcast. She's joined by Dr. Ronald Petersen, a neurologist at the Mayo Clinic and an expert in Alzheimer's disease and other cognitive disorders. Also on the podcast are two legislators who sponsored legislation related to Alzheimer's treatment in their states: Senator Laura Murphy of Illinois, a Democrat, and Senator T.J. Shope of Arizona, a Republican.
Alzheimer's affects a significant number of Americans over 65, more than seven million, and is the sixth leading cause of death in that age group. It's expected that more than 13 million people will be diagnosed by 2060. Beyond Alzheimer's, roughly 10% of U.S. adults over 65 have dementia. Dr. Petersen explained the remarkable progress that's been made in recent years in the diagnosis and treatment of Alzheimer's and the importance of early intervention. Rosen outlined the enormous financial impact of the disease on society and the role state legislatures can play in supporting early detection and treatment.
ES: (00:01:57):
Senators Shope and Murphy each laid out the legislation enacted in their states and how that legislation will aid both people with the disease and their families.
Here's our discussion, starting with Dr. Petersen.
ES: (00:02:11):
Dr. Petersen, welcome to the podcast.
RP: (00:02:14):
Thanks very much, Ed.
ES: (00:02:16):
Dr. Petersen, I understand the general area of your research in Alzheimer's and cognitive disorders. And I always hate to ask this question because I'm sort of saying, "Well, what have you done for the last 50 years?" But maybe you could just give us kind of briefly an idea of what your focus has been in these areas during your career.
RP: (00:02:33):
Sure. Happy to. And again, I appreciate the opportunity to share some thoughts with you. Over the years, we've evolved in the area of Alzheimer's disease, clinical care, Alzheimer's disease research, sort of on two fronts. One is the diagnostic front. How good are we at calling Alzheimer's disease? And the second front is, what do we do about it? What are the treatments out there? And I think we've made significant strides in both areas. So on the diagnostic side, we now characterize people earlier and earlier in the disease spectrum, meaning we're picking up the disease at earlier points in time. A little bit of forgetfulness. Is this normal or is this the beginning of Alzheimer's disease? So from a clinical perspective, we become sharper in detecting what might be real disease presenting at an earlier stage. So, that's on the clinical spectrum side. After we make a clinical diagnosis of subjective cognitive decline, mild cognitive impairment, which means I'm not remembering as well as I used to, maybe not as well as I ought to, but everything else is okay.
RP: (00:03:44):
I'm driving, paying my bills, doing the taxes. I look pretty normal, but my memory's not what it used to be. That could be an early stage. And then there's dementia. Dementia, mild, moderate, severe dementia, meaning I can no longer do my daily activities because of my thinking skills. So I'm off. I need help now. I'm no longer independent. I need some help with my daily activities. So again, subjective cognitive decline, mild cognitive impairment, dementia. That's on the diagnostic side clinically. Then we ask the question, what's causing that particular clinical picture? And here's where Alzheimer's disease comes in because it's one of the biological diseases that interferes with our memory and thinking ability. And we've made great advances in the area of what's called biomarkers, meaning we can now through imaging tests, spinal fluid, maybe even blood, we can determine if this person's mild cognitive impairment is due to underlying Alzheimer's disease.
RP: (00:04:48):
So that's a big step. 10 years ago, we sort of had to guess at it. It looks like Alzheimer's disease, but I don't know. Now we can be much more definitive. So that's been helpful on the diagnostic side. That then has led to development of treatments. And for Alzheimer's disease, basically there are two classes of treatments, symptomatic drugs and disease modifying drugs. Now, symptomatic drugs have been around for 20 years. So, Donepezil, galantamine, Exelon, drugs like that have been around for quite a while. They help with the symptoms a bit, but they don't get at the underlying disease process. But more recently, just in the last few years, the FDA has approved two disease modifying therapies, so called lecanemab and donanemab. And these get at the underlying disease process itself, trying to remove one of the proteins that causes Alzheimer's disease. And this has resulted in a slowing of the progression of the disease.
RP: (00:05:50):
So, long story short, advances on the clinical diagnostic specificity side and now leading to treatments that get at the underlying disease process itself.
ES: (00:06:03):
Well, for someone my age, I have to say that what you're describing is really an incredible advance because when I think about when I was in my 20s or 30s or something like that, and I was a newspaper reporter, I used to cover health care and covered Alzheimer's and other cognitive disorders. It was a pretty grim outlook. So, that does sound like an awful lot of progress. So, as we're talking to state legislators, I wonder if you could talk a little bit about the clinical context of the difference between Alzheimer's and other cognitive disorders and how that might be important for policymakers to understand.
RP: (00:06:42):
Well, it's important to realize that Alzheimer's disease is not the all-encompassing term for cognitive impairment and aging. We often make that mistake. We say, "Oh, it must be Alzheimer's disease." Well, it could be Alzheimer's disease, but it could be one of these other neurodegenerative diseases like dementia with Lewy bodies. Lewy bodies cause Parkinson's disease. Well, there's a cognitive form of that. There's another form called frontotemporal dementia, which is a different protein in the brain, affects different parts of the brain, which result in different behaviors and cognitive changes. There's a somewhat of an obscure protein that maybe is not all that obscure called TDP-43, a protein that gets misprocessed in the brain, laid down in the memory parts of the brain for all intents and purposes, looks like Alzheimer's disease, but it's a different protein. Then of course, there's vascular disease. All of us have a little bit of vascular disease as we age, little blood vessels close off.
RP: (00:07:41):
Maybe it's a big blood vessel, we get a stroke, but a small blood vessel can sort of pick away at different parts of the brain and can look again like an Alzheimer's picture. So we have to be certain that we're talking about the specific diseases themselves. Again, going back to the clinical spectrum, normal mild cognitive impairment dementia, then asking what causes that clinical spectrum, and here's where the different proteins come into play. But cumulatively, this is a big issue in aging because all of these diseases go up with age. So as people live longer, we're going to see more and more of these clinical pictures.
ES: (00:08:21):
Yeah. Let me ask you about that. I think that probably a lot of people think of Alzheimer's and think, "Well, we're going to see a lot more cases because the population is aging." But I wonder if the research has shown more underlying causes, maybe it's beyond just we're all living longer than we have in the past. Are there environmental or genetic or lifestyle factors that affect this? And are these things legislatures should consider when they think about long-term preventative strategies?
RP: (00:08:53):
Yes, I think so. I mean, there certainly are the biological features that we've talked about of these diseases. And to a certain extent, they are genetically, I don't say determined, but genetically influenced. So if you've had people in your family who have had dementia, Alzheimer's disease in particular, your risk of getting those diseases goes up, just like it does with heart disease, with cancer, with diabetes. They sort of run in families. Doesn't mean you're going to get it, but your risk is up. So there is a familial genetic predisposition. There may also certainly be environmental factors. Now, I have to stop short of saying that environmental factor A or B will cause Alzheimer's disease biologically, but certainly can cause or contribute to the clinical picture. Again, the mild cognitive impairment, the dementia, and these are very important components of the quality of life as we age.
RP: (00:09:53):
The Lancet Commission in London put out a report a couple years ago saying maybe 35 to 40% of dementia, not Alzheimer's disease, dementia might be treatable or might be modifiable. And here they go into a bunch of lifestyle factors that could be important in any individual. So when we see somebody with cognitive impairment, we try to define what the biologic entity is, but then we also talk about these lifestyle modifications because they may be as important as any drug intervention on the particular quality of life of that individual. So lifestyle factors are important.
ES: (00:10:35):
From a policy point of view, states, state legislatures might look at encouraging those sorts of things as a possible way to help slow down some of the effects. And just sort of on that point, what are the current testing and treatment options that are available, particularly that state policymakers should be aware of as they think about legislation affecting this?
RP: (00:11:01):
Well, certainly on the lifestyle side, I mean, state legislators could influence the amount of green space that exists in a particular environment, allowing space for parks, for outdoor activities, for physical activities, for growing healthy food, et cetera. All that can be important and may actually have a significant effect on the quality of aging. Certainly when we get down to then pharmacologic therapies, drug therapies out there, we do have to keep in mind that these drugs can be expensive, can have some side effects with them, but as we refine them, as they get better, they will become more of the fabric of what we see when we're aging. So it may very well be down the road that we develop perhaps diagnostic biomarkers for an array of disease entities that may influence. So I was mentioning earlier, Alzheimer's disease is two proteins called amyloid and tau.
RP: (00:11:59):
Lewy body disease is another protein called alpha-synuclein. I mentioned this TDP-43 vascular disease. So one could imagine down the road that when you go in to see your primary care physician, here or she may order your lipid screen to see what your cholesterol is, your LDL, your HDL, your triglycerides, but may also order a cognitive screen because in the blood we may be able to detect, do you have amyloid, do you have tau, do you have alpha cyanuclein, et cetera? And importantly, here's what we do about it. So now we will actually use different therapies, maybe different drugs in addition to the lifestyle stuff, but different drugs to treat these different proteinopathies, as they're called, and actually reduce the risk of progressing cognitively over time. So one can imagine that that's on the agenda for the not too distant future that we can treat these diseases with combination therapy.
ES: (00:13:01):
As we look forward in wrapping up here, I wonder what advice you'd give policymakers as they try to balance out wanting to give people access to care and acknowledging that their state budgets are limited. So what's the best bang for the buck here?
RP: (00:13:18):
Well, I think reinforcing the primary care environment, that is the individuals who are out there on the front lines and see most of the people in our populations who come in as they're aging and say, "Gee, I'm not remembering as well as I used to." Give them some resources, give them some time to actually explore some of these issues. Yes, my hypertension's important. Yes, my diabetes is important, but I'm not remembering as well as I used to. So keeping in mind that primary care providers are the ones who are getting squeezed these days, see more patients in a shorter period of time, that compromises their ability then to do a rather thorough evaluation. So be mindful that these individuals are really, really important in the system and giving them the latitude and support the resources and of course training the next generation of clinicians through our medical schools, through our universities, our state universities, giving the resources to the medical schools to expand their classes such that we'll be able to have an adequate number of providers down the road as we go forward.
RP: (00:14:28):
And one more thing, Ed, the whole field now is moving toward earlier and earlier identification of these issues. There are drug trials, clinical trials underway right now for people who are normal, cognitively normal, memory's okay, but they harbor these positive biomarkers for Alzheimer's disease. These two trials are going to read out in the next few years, and if they're positive, we're now talking about people who are normal and may wonder about, gee, mom or dad had Alzheimer's disease later in life. Am I on that road? And so our healthcare systems are going to have to accommodate these individuals who come in at these questions again at the primary care level. So just a heads up for what might be happening in the next few years that really is going to influence the healthcare environment in all of our environments.
ES: (00:15:26):
Well, doctor, thanks so much. I think this is great information, great starting point for legislators. I think for a lot of people, a very positive outlook given that most of us don't know so much about this and probably don't realize how much progress has been made. So thank you very much. I appreciate your time and take care.
RP: (00:15:43):
My pleasure, Ed. Thanks for having me.
ES: (00:15:47):
I'll be right back after this short break with Jennifer Rosen of the Alzheimer's Association.
Speaker 4 (00:15:54):
Looking for the latest in state policy, politics, and personalities? It's time to add state legislature's news to your regular digital rotation. Visit ncsl.org to find your go- to source for all the hottest topics, from policy and professional development to profiles and emerging issues. Stay informed and stay ahead with State Legislature's news.
ES: (00:16:27):
Jennifer, welcome to the podcast. Great to have you.
JR: (00:16:31):
Thank you. It's great to be here. NCSL has been an important longtime policy partner with the Alzheimer's Association, and I'm grateful for the attention you are giving to issues that greatly impact the lives of people living with dementia and their families. So thank you. Thanks for having me.
ES: (00:16:49):
Well, certainly a very important topic and glad to be on with you. So, let me ask you, across the country, we are seeing legislatures really beginning to pass a lot of legislation related to Alzheimer's, dementia, cognitive disorders. And I wonder, as you look at this landscape, what do you think are the primary drivers here? Is it fiscal concerns? Is it the demographic trend? Is it something else that are moving states to make these moves?
JR: (00:17:18):
It's both. I'll set the picture for you a little bit. Right now, over seven million Americans are living with Alzheimer's and you have nearly 12 million Americans providing informal or unpaid care for their loved ones. So when you think about the demographics, the numbers are growing. The economic impact of Alzheimer's is significant. Dementia is one of the costliest conditions to society right now. Looking at the health and long-term care costs for people living with Alzheimer's and other dementia, that's projected to reach about $384 billion with a B billion dollars, and that's not including the value of unpaid caregiving, which is valued to be around $413 billion. Medicare and Medicaid are expected to cover $246 billion of that total cost that I just referenced while out of pocket spending is expected to be around $97 billion. In 2050, the year 2050, these same costs are projected to reach nearly $1 trillion.
JR: (00:18:21):
So there's a huge impact here that we have to look at. Now, as you think about the size of the U.S. population, age 65 and older, and how that population continues to grow, the number and proportion of Americans with Alzheimer's or other dementias will also grow. By 2030, all members of the baby boom generation will be age 65 or older, which is the age range of the greatest risk of Alzheimer's dementia. State lawmakers really see the data, they understand the impact of the rising costs of care, and they know it is going to take the leadership of state governments right now to minimize the impact of the disease in their communities and the long-term impact on their state budgets. But there is one more important factor driving states to more actively legislate in dementia care, and that is hope. Just five years ago, the FDA approved the first disease modifying treatment for Alzheimer's that slows the progression of the disease, and now there are multiple treatments that have come to market.
JR: (00:19:19):
This is really huge for us in this disease space. Receiving early and accurate and accessible diagnostic testing for Alzheimer's has also historically been very challenging, but may soon be an improved reality. The latest advancement in Alzheimer's detection is blood-based biomarker tests, which they're relatively simple to administer in a doctor's office. And for many, early detection can bring peace of mind, time to plan ahead, agency over decisions and opportunity for treatments that slow the progression of the disease. And then finally, one last factor in us seeing this uptick and the reasons why legislators are working to act so swiftly. The US Pointer study results were released last summer, summer of 2025, showing that healthy behavior has a powerful impact on brain health. So, we now have an evidence-based study that is showing that healthy lifestyles can impact cognitive decline and reduce risk. This is huge. State lawmakers see this and are seizing the moment to serve the millions of Americans impacted by Alzheimer's and other dementia.
ES: (00:20:28):
I think these disorders affect even more people because there's so many of us who have had family members, even if we weren't caretakers, that we've seen suffering from these disorders. And it's heartbreaking, and it often goes on for a very long time. Elsewhere in this podcast, I spoke with Dr. Petersen from the Mayo Clinic, and I was very surprised and really felt kind of optimistic after speaking with him about the treatments and the change that's gone on in recent years. So as legislators look at this situation, what kinds of policies are they passing? What kind of trends or policy clusters are you seeing when you talk and look at legislatures around the country?
JR: (00:21:12):
There's been an effort across states to require insurance coverage for biomarker testing, to requiring coverage, both public and private paid plans. And this is really crucial. I think we've seen more than 20 states now enact legislation requiring coverage, and we expect several more will act this year. And this is really a crucial step in clearing the pathway to an early and accurate diagnosis for Alzheimer's. I hear all too frequently about the long and arduous process many families go through to receive a dementia diagnosis. It's really brutal. On average, it takes two years, and that is if the diagnosis even occurs. Some just give up because the hoops many feel they need to jump to navigate the system of care and the stigma within the system of care. It's just too much. We're also seeing states act on ensuring coverage of FDA approved treatments for Alzheimer's and dementia in all state regulated health plans.
JR: (00:22:08):
Just this past year, Illinois enacted landmark legislation requiring coverage for all FDA approved treatments and diagnostics for Alzheimer's and dementia. What's really incredible about that bill is that it also prohibits the use of step therapy, which could delay treatment. I can't underscore enough how huge this is for people impacted by Alzheimer's. The available disease modifying treatments that have come to market require a diagnosis in the early stages of the disease, so there's no time to wait. We have to ensure that families can access critical treatments that allow them to spend more time with their loved ones, more time at home, and more time being active members of their communities. I'm really excited to say that Nebraska and California and Minnesota have already taken up similar legislation to that Illinois bill just this session, and we expect several other states to introduce similar bills over the next year.
JR: (00:23:04):
So state lawmakers are really understanding the needs, seeing the need, and wanting to lead to ensure access. One other interesting trend is around state government infrastructure. We are seeing states allocate funding to establish things like dementia units within their state agencies, sometimes in the state health department, sometimes in aging, and this is really to ensure that there is a coordinated statewide response to the disease. It's truly impactful and really turning the tide quickly when working to address this public health crisis from a population health perspective. It's similar to the incredible progress we've seen with cancer, with diabetes, with heart disease, where what can happen when you establish an infrastructure within state government to ensure a coordinated response, to ensure that divisions and departments within state government are working together, are collaborating on a statewide response, are working with community stakeholders, with the legislature to ensure that every area of the state has the need met, that people living with dementia and their families across the state in rural and urban communities alike, there's a coordinated response to the disease that meets their needs and touching really every constituent and ensuring that resources are used efficiently and effectively within the state.
ES: (00:24:26):
Well, it sounds like these remarkable scientific breakthroughs have really spurred a lot of activity in the states, but of course, whenever we talk about state legislation and particularly around health care, the issue of money is a big one. Medicaid, as you know, better than I is often the largest item if combined with the federal money, the states spend. And a huge part of that money is going towardspeople with Alzheimer's or other cognitive disorders. Now, a lot of that money goes to high, you hope, to high quality institutional care, but there's also the issue of home-based care, allowing people to stay in their homes while they're getting treatment. And what's the balance there? What do you think states are doing in terms of trying to balance this institutional situation and trying to let people age in place, if you will?
JR: (00:25:17):
Yeah. I think states are really feeling the pressure here in this area at the most. A lot of credit should be given to state lawmakers because I think the paradigm really started shifting quite a bit over the last decade and recognizing the need to shift that focus to home and community-based services. We're seeing now that really they're working to drive as many people as possible to the HCBS settings. They have better outcomes, they cost less. And as a result, the few that remain in institutional care will have higher care needs that will need to be addressed, but the hope for people living with dementia is that we're delaying that need for the institutional care for as long as possible. And that is significant for our constituency in particular because almost half the people who are living in nursing homes and assisted living communities have dementia.
JR: (00:26:07):
So the impact on state budgets, when you think about how many of those folks also are receiving Medicaid is quite significant. I've been seeing states adopting specific Alzheimer's care planning--CPT codes--in their state Medicaid programs. When you have something like that in place, it encourages more of those conversations in the clinical setting that are occurring so that folks can plan for their needs as soon as possible after a diagnosis in coordinating support services care. We're really excited to see states adopting that care planning code. We're seeing states establish and grow dementia specific respite care programs so that families can access a little bit of grant funding to help offset the cost of respite care, and that's really allowing families to keep their loved ones at home longer in the community longer. It's also helping to reduce families from spending down their income and their savings so quickly to provide for the cost of care.
JR: (00:27:10):
One of the most impactful trends that what we're seeing state lawmakers take hold of is establishing statewide dementia care specialists or dementia navigators programs. And these programs really are game changers. They are housing specialists in counties across the state. They're greatly improving access to referrals, resources, and dementia care navigation and support in communities across the state.
ES: (00:27:36):
I know state legislators know this. I'm sure the people you work with know it, but I think the general public does not realize how much of the Medicaid dollar goes to caring for people in long-term care facilities and how many of those people have dementia. And with that in mind, the other issue that states deal with across the board is workforce. And certainly workforce in long-term care facilities has been a huge problem. And I wonder if you see strategies, states adopting to try to get at that problem. One, I assume would be more home-based community care. How about in the facilities themselves?
JR: (00:28:15):
This is a challenging space and it will continue to be because the reality is, especially for people living with dementia, we will work to ensure that they can stay at home in the community as long as possible and with their loved ones as long as possible and reduce the need for more costly institutionalized care. But the reality is that many will end up in the late stages of the disease, they will require a higher level of care. And that level of care is costly. If you're talking about quality care and the need for that around the clock care and support. And so it is a real challenge that state governments have spent decades and decades tackling and are still working towards for how do you address that need. Workforce certainly is a challenge as you referenced in the onset of the pandemic really just put the workforce challenges under a microscope and blew them up really, right?
JR: (00:29:02):
For long-term care, understanding dementia is critical to knowing the person and providing quality care. And so we see that training can really help improve retention rates, staff retention rates in long-term care communities and better manage ... And the training can help staff better manage dementia behaviors, which ultimately then can lessen the burden on the hospital system, right? So that you have less folks that are being ... I hate to use the term, but the term you hear about is dumping, that they're being dumped in emergency rooms, right? In hospitals when care community might feel that the burden is too large and they can't care for that person in that moment. But many times that has to do with training and a lack of sufficient dementia specific training. So we've seen numerous states pass laws requiring dementia training for direct care workers, but we also need to change the trajectory.
JR: (00:29:58):
We started our conversation talking about the hope that exists now with new treatments and better diagnostics. But there's still a stigma in the provider community for diagnosing dementia because for that long old adage that we've heard of, well, what's the point of telling someone they have a diagnosis? This is just going to upend their life. There's nothing we can do for them. And that's not true. But that's how when you do that and you don't give that diagnosis early, that's one of the contributors to an overburdened long-term care system and to the cost because folks aren't able to plan early and sufficiently for care. And so then they're ending up in a long-term care system that is overwhelmed. Reimbursement rates can be challenging. The impact on state budgets are significant. Wow, what a difference if we got past that stigma of saying there's nothing we can do because there is so much we can do.
JR: (00:30:53):
So we've seen states work to change the trajectory. States like Illinois, Massachusetts, Rhode Island, Delaware, and Kentucky, as they've taken action to require dementia specific training for clinicians like doctors and nurses, nurse practitioners in order to improve brain health and early detection and care, all towards that need for reducing the need for long-term care. One other innovation that we've seen is Georgia. Georgia has established an innovative program that several states are looking to replicate. It's called the Georgia Memory Net Program. And this is an incredible collaboration between the state agency and Emory University, where the Georgia Memory Net program is connected to the statewide dementia care specialist program that the state established. And that program's housed in the area agencies on aging, touching every county in the state. So when you think about the workforce challenges, we hear all the time the impact of neurology deserts.
JR: (00:31:51):
There's not enough neurologists. There is a concern about the primary care docs and the numbers, and do we have a sufficient number in the pipeline? But when you start looking at these statewide community based programs, like what Georgia Memory Net is doing, where it's a combination of resources, it's a state funded program, but then you also have Emory University, which has incredible Alzheimer's research center, diagnostic center, their memory clinics. And they're bringing that expertise in partnership with the state agency to counties across the state, so you don't have to just live in Atlanta. That's huge. And when you start thinking about the future of looking at home and community-based services and long-term care and the workforce challenges in healthcare, and you look at them holistically, what states are doing to look at these statewide programs and how you can place specialty providers or experts in communities is big.
JR: (00:32:52):
And we're really excited to see that growth and the promising state strategies implemented on that front.
ES: (00:33:01):
Let me ask you this as we close ,a question I like to ask experts like yourself. As you talk to state legislators, when you think about state policy makers, what advice would you give them if they want to take the initiative and legislate in this area in their state? What are the steps? Where should they go and how should they think about it?
JR: (00:33:23):
Well, first and foremost, I would say don't be afraid to be bold. There is so much work that needs to be done to ensure that families impacted by dementia are better supported and so much work that needs to be done to ensure that people living with dementia have sufficient access to care providers so they can receive an early and accurate diagnosis. And so they can access life-changing disease modifying treatments. There's also much work to be done to advance policies that support risk reduction. The science has come so far in the last decade and there is great opportunity for state lawmakers really to seize this moment. Their constituents are counting on them to lead their state's response to Alzheimer's and all other dementia. State lawmakers should ask questions about the status of implementation of their state Alzheimer's plan. When was the last time your state agency updated the statewide Alzheimer's plan?
JR: (00:34:15):
What are the roadblocks in implementing the recommendations? State lawmakers can really lead here. The Alzheimer's Association's chapters in every single state, and we are here to partner with lawmakers across the nation. You can visit alzimpact.org, that's A- L-Z-I-M-P-A-C-T.org to learn more about innovative state policy solutions.
ES: (00:34:39):
Thank you so much, Jennifer, for taking the time to share your perspective on this. You take care.
I'll be back after this break with Senator Laura Murphy of Illinois.
Speaker 4 (00:34:56):
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ES: (00:35:54):
Senator Murphy, welcome to the podcast. Great to have you here.
LM: (00:35:58):
Well, thank you, Ed, so much for having me. I really appreciate the opportunity to talk about this really important issue.
ES: (00:36:06):
So senator, you're a leader in the area of Alzheimer's and dementia policy. I've read about the efforts you've made there in Illinois. And I want to ask you about that effort, but to start, I wonder if you could just take a second and tell me why this policy area is important to you.
LM: (00:36:21):
There's just so many people inflicted with this disease. I see luckily my family has not had to deal with the issues of that, but I see so many other people struggling with what to do and all the impact that Alzheimer's has. Whatever we can do to help allay some of the problems that people face with Alzheimer's, I want to do everything I can to help in that area.
ES: (00:37:06):
Elsewhere on this podcast, I talked with Dr. Ronald Petersen from the Mayo Clinic about the treatments and medications that can help slow the effects of Alzheimer's. And frankly, I was surprised at how much progress has been made just in the last decade or so. Your legislation that was signed into law last year deals with insurance coverage for FDA approved treatments. And I wonder if you could talk a little bit about what's in that legislation.
LM: (00:37:31):
Certainly. Well, this is Senate Bill in Illinois, Senate Bill 126, which requires group and individual health insurance to cover FDA approved treatments or medications to slow the progression of Alzheimer's disease. So it includes covering diagnostic testing by doctors to determine what treatments and medications are appropriate. It eliminates that step process where insurance companies like to have you try this and then try that, then try that. Before getting to the real medication, that is often more expensive. But by the time you get all those steps done, you've really incurred more expense than if you would've gone to the medication that deals with the problem to begin with. So in recent years, the FDA has approved these medications and they've shown to delay the cognitive decline in people impacted by the early stages of Alzheimer's. And like many diseases, early detection is extremely important. And so that's what this bill does.
LM: (00:38:35):
I'm excited because in Illinois we have a number of, I think actually we may be the state with the most chartered insurance companies, so it will have a big impact on coverage for folks.
ES: (00:38:50):
Senator Murphy, just about any piece of legislation that makes it through any legislature requires building a diverse coalition of support. It's not easy to get any piece of legislation through. And I wonder how you went about collaborating with all the stakeholders involved in this area, advocacy groups, families, state health officials, and I'm sure there are more. And what were the biggest challenges you faced in getting this over the finish line?
LM: (00:39:17):
With so many people impacted with this disease, over 200,000 adults, 65 years or older, it wasn't hard to get legislators on board because most of them had known someone that is suffering or has suffered from that disease. This bill had bipartisan support. It passed unanimously through the Senate and House chambers because of that awareness of the need for early detection and for medication that's going to help easily. So the stakeholders in this bill were really supportive. Of course, insurance companies always are the ones that don't want to incur the cost, but I think as they recognized the support that it built on this bill, the importance of getting the right medication initially could actually be a cost savings. They also jumped on board. So it was an easy bill to pass because the number of people that are impacted by it and everyone knows somebody that is suffering from dementia or has suffered from dementia.
ES: (00:40:23):
Well, Senator, you're an experienced legislator and you know better than me that funding is always an issue with almost any piece of legislation. And particularly in the area of Alzheimer's where there's certainly the expectation that long-term costs for states are going to go up as people age and more people are affected by this disorder. But there's also the argument that the shorter term funding may overcome some of those long-term hurdles. And I wonder how you folks think about it there in Illinois in terms of the long-term versus the short-term.
LM: (00:40:56):
So in cases like Alzheimer's, early intervention helps reduce costs in the long run. So as insurance companies recognize this, it minimizes the long-term costs. Alzheimer's is one of those diseases that is a long-term, particularly if you have a physically healthy person, this disease can linger for significant periods of time, but the longer we can keep someone healthy, both physically and mentally, then the costs are actually decreased. So often, even though policymakers and budgeteers often look at the cost, sometimes they do look at the long-term costs and recognize the benefit of early detection. And now, and I'm sure you'll probably in the full interview with this, you'll find people that will tell you how now there's markers that can be tested to detect Alzheimer's. I mean, the amount of research that has gone on with this disease and the things that science now has enabled us to do really will help save in the long run.
LM: (00:42:04):
So much, not only fiscally, but all of the stress that is associated with this disease on family members and caregivers and those that are suffering as well. As
ES: (00:42:17):
We wrap up here, let me ask you about the long-term challenge. What do you think are the most critical steps? And feel free to give advice to your colleagues around the country. What are the critical steps for legislatures to better support individuals and families navigating Alzheimer's and dementia diagnoses?
LM: (00:42:35):
We have to do comprehensive services for Alzheimer's. The medication, the detection, they're just one part of it. Then we also need to engage in support for family, for caregivers. The physical locations that people are forced to live in then as sometimes they can become unable to stay independent. So those are all things too that we have to address. And it's not just Alzheimer's. When we do it for one disease, it has tentacles so that every disease, long-term diseases, can benefit from advances that are made in one area. So that's the great ramifications that can happen from just doing it in one area. We can spread that in what we've learned into other areas of disease and prevention, detection, and then treatment.
ES: (00:43:32):
Well, Senator, thank you so much for sharing your experience there in Illinois, and I really thank you for your time. Take care.
LM: (00:43:40):
Oh, thank you.
ES: (00:43:41):
I'll be back after this with Senator T.J. Shope of Arizona.
Speaker 4 (00:43:50):
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ES: (00:45:07):
Senator Shope, welcome to the podcast. So great to have you.
TJS: (00:45:11):
Thank you for having me today. It's a great day to be in Phoenix.
ES: (00:45:16):
So you've been a leader in a policy area related to Alzheimer's and dementia policy there in Arizona. And I want to ask you about that in just a moment, but I wonder to start, if you could just tell us a little bit about why this policy area is important to you.
TJS: (00:45:31):
Personally and professionally, I think it is an important study area. Start with just the kind of Arizona-centric reasons why it would be much like the Southeastern United States, Florida specifically. We have a population that chooses Arizona as far as retirement. Not only do we have a population born and raised here, et cetera, or has worked a career here in Arizona. We also have a number of folks who have just chosen Arizona as where they want to spend their retirement years, which obviously kind of inflates our number, much like I would imagine it does in Florida. So we have some of these issues that ... And trust me, this isn't the only one, but specifically to our conversation, obviously that adds a population that is susceptible to some of these dementia related issues. Additionally, my formative years of growing up, my home had a great-grandma who had Alzheimer's disease.
TJS: (00:46:31):
At that age, I wasn't really sure what that all meant at four or five years old, but she did spend a lot of time at our home. So I know a lot of the things that I really didn't quite understand maybe at that point in time of why do we have reverse locks? Why can't I just open a door? Or why can't ... The things that you seemingly were used to that all of a sudden change periods of time and things like that, which until later, I really didn't understand all of the ways that the impacts that it can have, not just on the individual afflicted, but also the surrounding family and/or friends that are part of the whole caretaking community. So when these opportunities presented themselves to get a little bit more involved in trying to make sure that Arizona was a good spot for the care that we need and that these folks need, not only that, the care that these folks need, but the care that we don't talk about too much, the care that the caregivers need oftentimes.
TJS: (00:47:35):
And just the attention and not in a, "Hey, look at me, look what I'm doing. I'm a saint for having taken care of my elderly loved one." No, the reality is the things that you and I take for granted, the trip to a grocery store unimpeded and being able to have a night where maybe I gather with some friends and just have a couple glasses of wine and just talk about what happened in our life this week and things like that, that really aren't things that are able to be easily done by the folks that are often giving part of their life to be a caregiver. So a whole multitude of reasons. And when I became chair of the health committee here in the Senate a couple years ago, found an opportunity. It was kind of a right time for the Alzheimer's Association, right time for me as an incoming chair to begin really diving into some of the issues that we're facing as a state.
ES: (00:48:30):
Well, those are such great points. So many millions of people involved in caregiving, and of course, millions more of us who've had this in one way or another in our family. Let's talk about legislation. Tell us what was in the legislation you were involved in there in Arizona and how that's working out at this point.
TJS: (00:48:48):
Yeah. So I think that part of what we realized, and it's not surprising to me because I think that in so many ways we operate in silos, right? State government operates in a silo in and of itself and oftentimes isn't talking to county government or municipal. And then those entities oftentimes aren't talking to maybe a charitable organization that's on the ground doing work. How are these people finding each other? We decided that we would run some legislation. We called it a dementia state plan similar actually to keep bringing Florida up, but they had done something similar and we wanted to mimic that. It was really about trying to make sure that all of these entities were talking to each other, setting up these folks at kind of a county level, departments of health at those places and working with the State Department of Health to make sure that people who move into areas know that there are services available, things like that.
TJS: (00:49:47):
We're linking these folks up together as soon as possible. I can tell you, I've represented an area now for 14 years that includes the largest portion of it is a county that has been the fastest growing county in the US, oftentimes, and has been in the top five, at least consecutively for the last 20 years. So you have a lot of folks that move in of all age brackets that may just not be familiar with what's available to them in that area. We really wanted to nail that down. We added some dollars to it so that we could advertise what we had already available that was included in another bill that was more budget related. I think all those things kind of worked together. And then we found really when we started doing that and started kind of directing the programming in that way or marketing the programming, that our local communities or local cities who may have already had a champion on their city council or whatnot found that, "Hey, well, you know what?
TJS: (00:50:46):
We have an annual health fair in our city. Let's make sure that we have some sort of a representation from the Alzheimer's Association or make sure that we have some of the specific facilities that offer memory care and things like that that are represented because it's been an underserved portion of the population for many years." Well,
ES: (00:51:10):
I think you make a great point about how many different people, organizations, entities, whether that's governmental entities or nonprofits, that kind of thing are involved. What was your strategy to try to bring those folks together and get support from all these different stakeholders to back this legislation?
TJS: (00:51:30):
Yeah. So what's interesting is how much of the strategy was led by folks who were in the caregiving community. Who better to turn to than people experiencing this? Maybe they had cared for someone for some time and is now passed on. So this is a charge in their life that they want to make it a big deal and try to make things better for other folks who have gone through what they've gone through, or maybe it's somebody brand new to the thing. And like I said, there were some local elected officials who have had this type of thing in their mind of what they wanted to do. So it was kind of all of the above type of approach to this. I have one constituent in my legislative district who really took the bull by the horn. She became kind of a coordinator of these programs.
TJS: (00:52:17):
You kind of have this thing and you're starting from nothing to all of a sudden on a monthly basis now because all of these groups are talking to each other, was able to start what's known as a memory cafe where she and other caregivers bring, if they're able, the folks that they're caring for in for a breakfast once a month, they talk. It has really turned into a community that's been set up out of nothing. Something has been born over the last couple years that wasn't there before. And you have to owe it to some of the things that my colleagues and I had worked on during that time. We also had some other types of issues we were working on with facilities and their memory care programs make sure that ... I'm sure like other states, you have the bad headlines that appear every so often about is proper care being done in this place or that place, or you have something that's unfortunate that's happened.
TJS: (00:53:15):
So it offered an opportunity to get everybody in a room, whether they were long-term care facilities in the traditional sense, or as I oftentimes call them, the memory care facilities that are very much a paradise valley type of feel to them, a resort almost. All of those, while differing in their audience that they're trying to reach just from a socioeconomic perspective, are all trying to achieve the same thing. And how are we making sure that they're talking to you? There's really, in many respects, obviously no reason to reinvent the wheel here. If something is working, let's make sure that all of us are talking about that. Much like, frankly, this is a podcast here put together, NCSL is a big part of it. It's the same thing that we do whenever we get together for an academy or a breakout session or at the summer conference that we'll do in Chicago.
TJS: (00:54:09):
Everybody has ideas and the exchange of those ideas are perfect for situations like this.
ES: (00:54:17):
Well, I think you're right on the nose there with the value of talking with your colleagues around the country. And it does sound like when it comes to trying to put together a group to look at this kind of legislation that you might be a good guy for people to talk to. Let me ask you, as I do almost every time I talk to legislators about money, particularly in the area of Alzheimer's and dementia care, there's sort of a short term and a long term issue. And a lot of this comes down to the effect on your Medicaid budget because there are so many people in long-term care who do need support from Medicaid. I just wonder how you think about that. Obviously, you've put a lot of thought into this issue. How do you think about this funding issue, both in the next short term, but over the longer period as we're expected to see more people develop these conditions?
TJS: (00:55:06):
It's no secret that we have an aging population, right? We don't, as a country in general, and as most, you can look at statistics from across the globe, people are not having the amount of children that they had, and in many places are not even at replacement level, right? So this is not just a statistical glance would tell you that that is the case. What that means is that we are going to have to obviously take into consideration what we want these types of care options to be looking like in the future. We talk about that all the time when it comes to workforce development. "Hey, we have X amount of folks in the trades that are retiring at this time in that time. What are we going to do? Let's invest in, whether it's com colleges or other programs that we have. Let's get these people into this stuff in high school even with STEM programs and whatnot.
TJS: (00:56:01):
"We haven't had as much of a conversation about what we do with the folks that have given so much to this country over the last X amount of decades of their lives and how we want their years towards the end to be lived. And I think everybody shares it should be as comfortable as possible, right? Whether you have no affliction, which knock on wood, I think all of us want to be there, but I can tell you, I haven't just turned 40 less than a year ago. I can't hang out with my buddies and watch March Madness like I used to and still feel good the next day. So I get it. It's happening, whether we like it or not, and we have to have plans in place for what we want that to look like for folks, especially in this Alzheimer's dementia space. I think that it's budget, getting my colleagues to think about what that looks like, kind of breaking it down for them in a way to say that most of us, I'm definitely not an exception to the rule here, have had a relative, a family member that has either been suffer of the disease or has cared for somebody.
TJS: (00:57:17):
What do we want to go ahead and do there? We have a great relationship with a lot of the biomedical industry here in Phoenix and the things that they're doing on early detection, on recognition. Hey, you may be susceptible to something going on because your genome presents that your family history may cause you to be susceptible to X, Y, Z. What are we doing to make sure that all the steps are being taken as early as possible in a cost-effective way? Because early detection, as we know with other ailments that are out there, is the key to cost effectiveness if we're talking about those things in that fashion, in a budgetary fashion. We've been very successful, I think, in really drilling down. Obviously, you're going to have people who are supportive regardless of the cost because they're just that passionate about this, but in order to get some of the more budget hawks on board with something like this, you really have to talk about early detection, making sure that you're doing the most cost-effective things in treatment, et cetera.
TJS: (00:58:28):
And you know what? With the innovation that's going on right now in the world, we're pretty darn close, I think, to making sure that, hey, if we can detect early, start taking steps, there very well could be a cure here coming in the next couple years or so.
ES: (00:58:44):
Let me ask you, Senator, as we wrap up here, looking down the road, what do you think, not just for your legislature, but what would you suggest for other legislatures, your colleagues around the country, what should they be looking at long term in terms of better supporting the people who both have this disorder, but also those who are supporting them as caregivers?
TJS: (00:59:06):
Well, I think the first thing to be done is ask yourself, if you're a legislator in another state, do you have a plan in place already? Do you have something at the very least to make sure that the organizations who are doing good work within your state's borders are talking to governmental agencies, other entities that are out there that are involved in the space? Because if they're not, at the very least, start talking about that. Start making sure that you're making it as easy as possible for your citizens, your constituents to find the services that I guarantee you they are seeking. And I would also encourage social media, we give it a bad rap a lot of times because of the things that we use it for, right? It's just an echo chamber of beating the crap out of each other, but the reality is it can be used for good too.
TJS: (00:59:57):
I guarantee if you look on whether it's Facebook or Nextdoor or any of these other social media outlets that are out there. If you go to the search bar, you're going to find communities that exist within social media that are talking about memory care and talking about the support systems that are out there. Those are the folks you're going to want to engage with. Talk to your Alzheimer's or dementia association within your state to learn what they're discussing, what the things that they'd like to do. And then you go on from that and you start bringing your colleagues in, especially if you want to lead on this issue like I did over the last a few years ago and have continued to do, prepare yourself. You're going to hear a lot of stories that people are going to unload on you at many times because they just haven't had that outlet in this place, in this Senate building or elsewhere to talk about some of these things.
TJS: (01:00:50):
And that's good because folks will come to a realization that not only have they known someone, it could very well be something that they have to deal with later in life. And don't you want it to be better at that point in time? And don't you want us to have moved the needle in a positive direction if and when that should happen than it is today, or it is when you were a caregiver or when you were watching this more from afar. So I think those are all some things that I would highlight for folks that are out there, but most importantly, definitely looking at to see what your state has in place already as far as memory care, the community and such. And then really working with them in a positive manner and bringing them to the table to talk. They're some of the most engaged people and passionate folks.
TJS: (01:01:43):
They're not just caring for their loved one, but they're also caring for the others who may be in a situation similar to theirs in the near future.
ES: (01:01:52):
Well, senator, I think that's great advice and thanks for sharing it. And thanks also for just describing and explaining the situation there in Arizona. Really appreciate your time. Take care.
TJS: (01:02:03):
You got it. Sounds good.
ES: (01:02:08):
You've been listening to Dr. Ronald Petersen, Jennifer Rosen, Senator Laura Murphy and Senator TJ Show, discussing advances in treatment of Alzheimer's disease and steps states are taking to help those affect it. Thanks for listening.
Search for NCSL podcasts wherever you get your podcasts. This podcast, Our American States dives into some of the most challenging public policy issues facing legislators. Our occasional series across the aisle features stories of bipartisanship. Also check out our special series, Building Democracy on the History of Legislatures.