Growing up in Alice, Texas, Jason Resendez didn’t have any experience with Alzheimer’s disease and other forms of dementia. But more recently dementia has started to become an issue in his family. Now the issue has come full circle: as Executive Director of the LatinosAgainstAlzheimer’s Network, all Jason thinks about are the changing demographics in the Alzheimer’s community, and in our nation. That’s because the number of Latinos in the US over age 65 is set to triple by the year 2050, when the care and treatment of Latinos with Alzheimer’s disease will be a critical health equity issue. Jason tells us how LatinosAgainstAlzheimer’s is coordinating Alzheimer’s awareness and brain health promotion efforts in the Latino community, where individuals have unique barriers to the health care system, or issues around stigma and language access that other communities don’t necessarily have.
Report: Latinos & Alzheimer’s Disease: New Numbers Behind the Crisis
“Celebrating the Power of Memory with Disney’s Pixar’s Coco” (Jason Resendez, 10/30/19, Medium)
“Feels Like Fuzz in My Head” by Dlay | | CC BY NC ND | Free Music Archive
“Tomoshibi” by Kakurenbo | | CC BY NC | Free Music Archive
JANA – In the United States today, there are about 4 million Latinos over the age of 65. By 2050, that number is expected to triple with Latinos making up 18% of America’s older adults. The flip side of Latinos living longer means an increase in their numbers who will suffer from Alzheimer’s disease. It’s the third leading cause of death in the United States, and the only leading cause of death for which there is no treatment or cure. LatinosAgainstAlzheimer’s is the first-ever coalition of community-based organizations in the United States to coordinate Alzheimer’s awareness and brain health promotion efforts in the Latino community. Here to explain how the coalition is addressing the growing impact of Alzheimer’s and dementia on America’s 55 million Latino families is Jason Resendez, the Executive Director of the LatinosAgainstAlzheimer’s Network. Jason, welcome to The Agewyz Podcast.
JASON – Hi, thanks for having me. I’m excited to talk about these really important issues.
JANA – So before we get into the work of your organization, I wonder if you could tell us where you’re from originally? And when you were growing up, what if anything you knew about Alzheimer’s?
JASON – Great question. So I grew up in South Texas, in a little town called Alice, of about 19,000 folks. It’s about 25, 35 minutes away from Corpus Christi, which is the nearest big city. And so when I was growing up in terms of Alzheimer’s, it wasn’t talked about. So I didn’t have any experience growing up with Alzheimer’s disease. It wasn’t something I learned about in my AP biology class. It wasn’t something that I experienced in terms of a familiar connection. And it wasn’t until more recently, that dementia has started to become an issue in my family, particularly with my great uncle.
JASON – And so it’s been a really interesting full circle of coming back and actually collaborating right now with the University of Texas Rio Grande Valley and the University of Texas San Antonio Health Science Center, these institutions that I knew very well growing up. You know, my sister went to UTSA for a little while after she graduated, and then knowing of the UT Rio Grande Valley. I had a really good friend who went to medical school in the valley. So now they’re starting an Alzheimer’s initiative, and they want to make Alice – the place where I grew up – one of the hubs.
JASON – So it’s really come full circle in terms of not knowing anything about the disease when I was growing up, to now I’ve really grown into this professional role where this is all I think about, are the changing demographics in the Alzheimer’s community and in our nation. I now have the opportunity to start having that impact that we try to have at the national level, also locally in community, and one of those communities actually being Alice, Texas. So it’s a very surreal experience, and one that I’m glad to be having.
JANA – You said that your uncle was the first person in your family to make you aware of dementia. I wondered what your reaction to his dementia was? How did that affect you, if it did?
JASON – Yeah. So it was through my grandfather who – my grandfather and I have become really close in the last 10 years. We’ve always been close, and he’s been a big role models for me growing up. But it was after he retired, and then after me going into this field and having a greater appreciation for aging and the challenges of aging, that I really started to engage with him on a different level. You know, I asked him questions about his past and his family and where we came from, and recipes and cooking and sort of a much more friendship-based approach to the relationship than before, which was more of a grandfather to grandson, see you twice a year kind of relationship. So I’d moved away to college on the East Coast, and stayed put on the East Coast.
JASON – And so it’s really through that relationship that we started having conversations, and he was always very aware of the work that I did. And he follows all his grandkids and his own kids, and saves newspaper clippings and things like that. So he’s always been aware of my career and what I do. And it was through that he started to talk to me about his brother, who’s my great uncle, who is a Korean War veteran, and his symptoms of dementia. And he knew what dementia was, so he started having a conversation with me about it. Like, Oh, I think your uncle is having this issue – and [he] would explain the symptoms. And I said, You know, that sounds very much like dementia. This is early on. And I started to explain to him there are different forms of dementia, sort of taking it to the next level, and just helping to provide him with the information that he needed to help navigate, you know, this possible dementia diagnosis with his brother.
JASON – So it’s been really interesting because we see in the literature, the role that stigma plays in being a barrier to a diagnosis for dementia, cognitive decline, Alzheimer’s… and so here was an opportunity to help kind of bust that stigma, and that there are many forms of dementia and how important it is to have the conversation with a physician or a provider. And also the fact that he was a veteran, he had VA benefits. And that’s where he accesses health care. So talking about what’s available within the VA and also what’s available as someone who’s Medicare eligible, and a Medicare beneficiary.
JASON – So it was kind of taking all the things that I knew from a policy and from a sort of literature perspective, and then trying to put them into practice in my family. And it was very challenging, because it’s very different when you’re looking at a piece of legislation or you’re looking at statistics. It’s not emotional. It’s not something that – the consequence isn’t personal. So that was a shift and sort of seeing my grandfather not knowing what to do, and then being able to provide him with information, but then also realizing you can give someone as much information as you want, but it really comes down to what they do with it. And so continuing to ask about, how is my uncle doing and making sure that they’re still aware and making sure that they’re aware of, you know, what could potentially be harmful behavior like getting lost on the highway. And you know, If you see those signs, you really need to have a conversation about taking the keys away. So it’s been a, an experience that’s brought us closer, but also an experience that, for me has been challenging in terms of how to put this knowledge that I have into practice in my family.
JANA – Is your uncle still living?
JASON – He is. He is still living and he’s in his late 80s now.
JANA – And where does he live? I mean, is he in a home or is he on his own?
JASON – No, he lives with his wife, not on his own. And, you know, one of the things that we’ve been trying to figure out is, he’s on many medications, and so there are some complicating factors occasionally with medication, to figuring out is that one of the issues, etc.
JASON – One of the biggest things that I’ve seen when it comes to this experience and also another experience with my nephew, not related to dementia but related to accessing specialty care – you know, that’s one of the big issues that we see across the board in Alzheimer’s and dementia, and also the aging community is, primary care providers are very ill-equipped to address this increasing prevalence of dementia and Alzheimer’s, in terms of being able to accurately diagnose the disease, refer folks to services or refer folks to research opportunities. And a lot of that happens within specialties like neurology. But the shortage of neurologists, particularly neurologists that reflect the communities – neurologists of color, is one way of putting it – in communities that are having these issues at increasing rates.
JASON – And so we saw that with my uncle and sort of getting a referral from the VA. But then also we see that with my nephew who has a different neurological issue that he’s navigating, and it took four months to even get an appointment with a neurologist. And once they got that appointment, it was three hours away from where we live. And then when they got to the appointment the neurologist decided, I need to reschedule this. My mom who is the advocate was saying, No, we’ve traveled three hours to be here and have work considerations that we have to deal with. You know, we can’t reschedule this. But this is the reality of care when it comes to these specialty professions.
JASON – And one of the things that we have to really address is, is the health system currently ready for changing demographics around Alzheimer’s and dementia? Is the health system ready for the changing prevalence of dementia across the board? And the answer is no, across the board as well.
JANA – Uh huh. I know that you’re not a doctor, but can you reflect for listeners on the difference between normal age-related changes in memory and changes that are caused by dementia?
JASON – Sure. So I’m not – as you said, I’m not a physician. In fact, I’m often the only non-physician on panels. So I like to make that clear. But when we talk about stigma, that’s one of the biggest issues we have to address. I think one of the things that stigma is rooted in is, how unclear folks are about the difference between extreme memory loss and normal signs of aging.
JASON – Whereas a lot of times folks think that extreme memory loss is part of the aging process – you know, it’s a normal part of aging to forget what your car keys are for. But that’s not true. It’s often true that you’ll misplace your car keys, and everyone does that. I do that, and I’ve always done that. And that’s normal, especially if you have a history of doing it. But it’s really when it comes down to not understanding what these keys are for, or misplacing them in a place like a refrigerator or in the bread box or something.
JASON – So there are great resources from AARP, the Alzheimer’s Association. that help to address the differences between normal aging and the symptoms and signs of dementia, which is an extreme form of memory loss.
JANA – Mm-hmm. I know your parent organization is UsAgainstAlzheimer’s. I wonder if maybe you can talk about the work that they do, and how you fit into the tent there, of UsAgainstAlzheimer’s.
JASON – Sure. So UsAgainstAlzheimer’s is an advocacy and social impact-based organization that’s really laser focused on eliminating barriers to a cure and better treatments for Alzheimer’s disease in all communities. So we do that by one, growing the tent of folks who are demanding a solution to Alzheimer’s, secure federal funding, you know, you name it.
JASON – So we’ve launched a series of networks and coalitions that really reflect the community of individuals that are over-impacted by Alzheimer’s yet underserved by the health care system. That includes women, that includes Latinos, which are one and a half times more likely to develop Alzheimer’s than non-Hispanic whites. African Americans are two to three times more likely to develop Alzheimer’s, so we have an African American network. We have a clergy network, because we find in our research that over 50% of individuals and caregivers, for example, say that faith is very important to them, that’s where they turn to for spiritual life and sustenance during this really challenging medical journey. And so we have a faith coalition.
JASON – And so we are making the tent bigger so that folks understand that, you know, Alzheimer’s isn’t just a disease of those that are 65 and older. It’s a disease that also impacts the caregivers, right? There are nearly 6 million Americans living with Alzheimer’s, but there are nearly 18 million individuals caring for that community of patients. And so this is a widespread issue. It’s becoming a more and more diverse community. In fact, research that we’ve done with Johns Hopkins and the University of Southern California, finds that by 2030, nearly 40% of Americans living with Alzheimer’s will be Latino or African American. And so there’s shifting demographics, so we call it the changing face of Alzheimer’s disease. And it reflects the changing face of, you know, the population that we see in the demographics. You started off with a great statistic on the changing face of the older adult population.
JASON – And so this is a disease that will be a critical health equity issue, given that so many of the individuals with the disease will be Latino or African American. And these folks have unique barriers to the health care system, or issues around stigma, issues around language access that other communities don’t necessarily have. And so it’s really critical that we bring these communities to the table. And that’s what UsAgainstAlzheimer’s has done through these networks.
JASON – We’re also focused on the patient voice, leveraging patient insights and making sure that the insights of the individual living with Alzheimer’s and the caregiver of that individual living with Alzheimer’s, are validated in things like drug development, are validated in things like research. And so that ensuring that patients have a voice in the discussions around drug development, whether we’re going to approve this drug or not approve this drug, whether we’re going to pay for a drug that gets approved. You know, we want to make sure that the patient voice and the caregiver voice is a part of that decision-making process. And so we do a lot of work around patient engagement and developing scientifically rigorous, patient evaluated insights to provide to payers and to federal agencies like the FDA.
JASON – And then a third place that we’re really focused on is brain health, really trying to change the conversation around Alzheimer’s, from one of doom and gloom and illness, to one of hope and wellness. Because one of the great things about the Alzheimer’s community is that it is highly collaborative, and we’ve been seeing a lot of increased understanding in how the disease works.
JASON – For example, in the last 10 years, we’ve started to realize that the disease starts to form in the brain 20 years before symptoms present themselves, which represents – and a lot of research is starting to coalesce around fact that there are things that you can do to reduce your risk for cognitive decline, dementia, and maybe Alzheimer’s in later life.
JASON – So we know that what’s good for your heart is good for your brain. So if you can do things like controlling blood pressure, managing your diabetes, eating healthy foods – have an active lifestyle – you can reduce your risk of cognitive decline, which ultimately could reduce your risk of Alzheimer’s. And so these are things that are not well-known, because the science is coming out every day. I mean, every year, and providers aren’t aware of this, certainly consumers aren’t aware of this. And so we’ve launched a brain health partnership to start to shift this conversation, and also the way the system is oriented around sort of sickness and service delivery to one of prevention and being able to deploy risk reduction strategies that work for different communities.
JANA – Well, it’s such a commendable endeavor because not only are some of these preventive measures not well-known, but they are being drowned out by this huge appetite in this country for dietary supplements and the false claims about what certain products can do. And we have seen documented cases of television ads, there was one for something called Prevagen that supposedly improved memory and supports healthy brain function. And in 2012, the Federal Trade Commission charged the makers of that product with false advertising. So you’re really not just battling the lack of knowledge, but this huge industry that is estimated to now be worth $40 billion. How do you combat that? I mean, it’s kind of a big question, but-
JASON -yeah. No, I think it’s a great question. And I think the answer is, we do it by being a champion of science. So really demanding that-
JANA -not easy these days, huh?
JASON – Not easy these days, but, you know, we see a lot of bipartisan support for research, and we know that NIH is investing a lot in non-pharmacological interventions for Alzheimer’s. So non-drug based studies Alzheimer’s disease, so looking at things like healthy eating and exercise regimens, and multi-modal interventions for Alzheimer’s disease.
JASON – And so there is a role for the more kind of comprehensive approach to treating and reducing risk for cognitive decline and Alzheimer’s. And supplements that are a part of that, certainly have a role, that have been rigorously tested and evaluated. But you’re right. You know, we are in a wellness space that is very unregulated. And the FTC stepping in is a great example of that starting to change. And AARP has been doing a lot of great work looking at the role of supplements and what supplements are out there, how they’ve been tested and evaluated against their claims, and highlighting some of those bad actors, but then also some of the good actors who are not making those claims but their products could be part of a recipe for healthy aging.
JASON – So it’s a challenge that is not easy to tackle, but one that we have to tackle, right? I mean, the numbers that we are looking at in terms of the oncoming wave of individuals that will be touched by Alzheimer’s, either through themselves or as a caregiver, really demands that we not turn away anything, right? That we have to look at everything and evaluate whether or not it’s effective, or can be part of a regimen of an intervention. And that’s the challenging part, is to be rigorous in how we look at potential solutions.
JASON – But there are a lot of partners, and that’s the other thing that we see in the Alzheimer’s space, is that thanks to an increase in federal funding, there are increasingly more resources available to help understand new approaches to Alzheimer’s treatment, and ultimately a cure. So it’s a challenge, but I think that’s where the hope lies – is that we’re not afraid to try and test every possible solution.
JANA – Jason, just to get back for a minute to the TV ads that make claims about certain products improving your memory, we just see so many of these kinds of ads and I think people go to their doctors, they want something that is available now. What can people be on the lookout for with regard to these ads?
JASON – Sure. So I’m not an expert here, but what I would tell a friend or family member is to really read the label when they look at an ad, when they go to the website or if they’re at a store. You know, to read the label and see, was this something that’s been FDA approved? Is this something that has been studied in a large population? So I think doing your homework. Not just trusting what you hear on a commercial, but taking the next step to understand whether or not this has been rigorously evaluated and tested against the claims that it’s making.
JASON – And again, AARP has a great resource. So Google AARP brain health and supplements, you’ll find a report that was released in, I think, early 2019, looking at these claims, and looking at the field. So you’ll see a nice rundown of products and, sort of, information about their claims. So I would say do research. I mean, that’s the number one thing for anything, is do your research. We have a current health care system where the patient and the individual is really treated as a consumer. And we have to really lean into that and do research, in terms of whether we think it’s effective for me or for my family.
JANA – Jason, how common is it for Latinos to participate in clinical trials and Alzheimer’s research in general?
JASON – So that’s a great question. That’s one of the biggest barriers that we see to developing an effective treatment that will work in all communities – is the lack of representation or underrepresented groups in Alzheimer’s research, and also across the board. NIH funded research, the research that’s funded by the federal government, is very much unrepresentative of the United States population.
JASON – So less than 3% of Latinos and African Americans and people of color make up overall research that’s federally funded. It’s for a lot of reasons. Part of it is mistrust of the research enterprise, because of really valid issues and instances of government abuse of research or abuse of these communities. One of the most famous is the Tuskegee experiments, where folks were unknowingly exposed to a disease. There’s also the Henrietta Lacks, where her cells were harvested without her awareness, and without her family’s awareness. And those cells are still being used today in drug development, and have really provided a boon to our understanding of disease. But that should have been done with the consent of – certainly Henrietta and then certainly of her family.
JANA – Why is that?
JASON – And these are instances where, you know, it’s not just the government experimenting, but also there’s commercialization that happens. I mean, the Henrietta Lacks is the perfect example, where those cells and the breakthroughs that have resulted from those cells have been commercialized. And so there are these examples of abuses by the research enterprise of these underserved communities, which really speaks to how that enterprise values these individuals. And so there are so many implications that are associated with these abuses that have created the sense of mistrust about these communities. So that’s one part of the puzzle.
JASON – There are other pieces of the puzzle just in terms of the infrastructure of research, where research, unfortunately, happens for the most part in the ivory towers of academic medical centers, which do not have great reputations in many cases in these underserved communities, where they have not invested adequately in outreach and in developing services for those underserved communities. And where there’s a resistance from the research enterprise to develop infrastructure in community-based settings. And we hear this all the time.
JASON – I’m on panels with folks from industry where we hear: this study is so complex, we can’t do this in a community-qualified health center. You know, we have to do this in a major academic medical center. So there are these excuses around infrastructure where – okay, I get that there are some things that you have to have, whether that’s a PET scan or an MRI. But for the long-term importance of inclusion, we have to make a decision to build that infrastructure in these communities. And that’s not happening to a great extent today. So there are structural issues that contribute to that lack of representation, in addition to the biases and history of abuse in the research enterprise.
JASON – Now, there’s also a lack of awareness within these communities as well. So that’s another piece of the puzzle, where communities are just not aware of opportunities to participate in research. And we certainly see that in the Alzheimer’s space as well. And there are a couple of reasons for that low level of awareness. One is providers are not aware, themselves, of opportunities, research opportunities for their patients. And so an individual is much more likely to enroll or to reach out about a clinical trial if it’s been recommended by a provider. And so we have providers that we need to better engage in the research process.
JASON – There’s also language issues. That’s one of the biggest issues that we see, or that I see, when it comes to recruitment for Alzheimer’s research, where you have many, many individuals that are interested, but we don’t have the ability to enroll folks in Spanish, which is their preferred language for health information oftentimes for older Latinos.
JASON – And so it’s a puzzle. We each have a piece of the puzzle to help address, and there is meaningful work being done in communities to address that. Certainly NIH has started to do a much better job in the last 30 years, about changing the trajectory of their diverse research cohort. They watch things – like the All Of Us project, which has a goal of recruiting a large sample of diverse participants for the All Of Us program. And they’re partnering with community-based organizations and developing materials that reflect the community, and partnering with researchers who reflect the community. That’s another big issue, is the lack of principal investigators who are black or brown or from the communities, that we need to be enrolled in this research.
JASON – So there’s a lot of good happening in places that we do work in, like Kansas City, where we have a community coalition of organizations that serve the Latino community and the African American community, who have a great partnership with the Alzheimer’s Disease Center there – the University of Kansas Alzheimer’s Disease Center, where they leverage cultural competent engagement tactics, using movies like “Coco” to help raise awareness and education, providing memory screening. So it’s much more of a two-way street in Kansas City over the last three years than it was before. And we’re starting to see that happen in other places as well. But it is a big – it’s a big issue.
JASON – You know, as we go back to the changing demographics, we know that by 2030 nearly 40% of individuals living with Alzheimer’s will be Latino or African American, but the majority of research is happening. without their participation. And so it’s unclear-
JANA -that’s just shocking, to me. It’s shocking.
JASON – Yeah, it’s shocking. It’s shocking that it’s happening, it’s shocking that, you know, there’s not a lot of accountability when it comes to it, like – that we’re allowing it to happen. And so there’s a lot of work to be done there. But I’ll say the community today is more focused on addressing these issues than it has been in the last many, many years. So I see a lot of hope when it comes to ensuring that when the first drug for Alzheimer’s is developed, that we’ve made significant progress in changing the representation issue.
JANA – Jason, I wondered if you could talk briefly about the generational differences in attitude, and the effect on caregivers in the Latino community – young ones in particular – of you know, having to maybe interpret for their parent or relative who has Alzheimer’s.
JASON – Sure, yeah. And I think that’s a really important area, that we’re seeing more and more young people take on the role of caregiver, particularly in the Latino and African American communities. And we know that the Latino community, specifically, is much more likely to be an intergenerational family unit, or intergenerational household, where you have a grandparent, a parent and then the younger generation living in the same household. So there’s a lot of benefits there – resiliency that comes from a culture where your grandma – I mean, my grandmother used to live with us for periods of time when I was growing up. So I was exposed to aging, exposed to caregiving. I didn’t know what it was at the time, sort of the work that my mom did, raising us but then also taking care of her mom who had multiple chronic conditions. Dementia wasn’t one of them, but other related morbidities like diabetes and liver disease. And so seeing my mom take care of my grandmother, one, exposed me to caregiving, also instilled a sense of resiliency, right? Like I’m now prepared to do that. I have a cultural reference point for that.
JASON – And we’re seeing that happen in the Latino community when it comes to Alzheimer’s and dementia. But particularly for immigrant communities where, as you said, we have younger generations who are performing the role of translators in the case of engaging the health care system. And sometimes that is literally translating, sort of, language issues. But then sometimes it’s just cultural translation – sort of being the one to engage with the physician and navigate the health care process, and navigate things like Medicaid applications.
JASON – In the case of one of our advocates who you talked to, Lisette Carbajal, who’s a millennial caregiver for her father, who lived with early onset Alzheimer’s for many years, along with her mom who was a primary caregiver, one of Lisette’s biggest roles was helping her family navigate the health care system, around Medicaid, around, you know, any number of issues when it came to her father’s medical treatment. And so we see that happening a lot.
JASON – We actually issued a report two years ago with the USC Roybal Institute On Aging, that looked at trends in millennial dementia caregiving. And one of the things that we found was that millennial caregivers of color, Latinos and African Americans, were much more likely to live in the household with the person they are helping to provide care for. They were much more likely to provide things like assistance with daily medical tasks. And so they had to learn those things and help the family navigate some of the more complicated medical tasks that come with Alzheimer’s care.
JASON – So I think it’s due in part to a cultural responsibility. And also in terms of just the demographics. I mean, we see a lot of different trends, economic trends, putting pressure on millennials, particularly millennials of color, who have lower levels of education, where this is the role that they’re being enlisted to take on because of things like student debt and the economic condition and other things. And so it’s a culmination, I think of trends, that is placing these individuals in these roles, and it’s one that we have to better address. That’s one of the biggest areas that we pointed out in the report, is there’s a lack of services geared towards younger caregivers, sort of the sandwich caregivers.
JASON – And so from that we launched a coalition of youth serving organizations, including the youth movement against Alzheimer’s, which is a college-based Alzheimer’s organization that has over 30 chapters at colleges across the country, and also Hilarity for Charity led by the comedian Seth Rogen and his wife Lauren Miller Rogen. And Lauren Miller Rogen’s mother lived with the early onset Alzheimer’s for many, many, many years. And that inspired them to get into the Alzheimer’s movement, particularly to energize young people in the movement, because Lauren was in her 20s when she started to help her mom navigate the Alzheimer’s journey and realized, just like we saw in our research, there’s a lack of services geared towards these young people. So they’re kind of out there on a lifeboat not sure where to turn.
JASON – So we’ve developed a coalition to help continue to raise those stories, but then also are coalescing around really important policy change to address that. One of those policy changes is paid family and medical leave for family caregivers. So right now we have a family and medical leave policy that is unpaid. There’s a lot of movement to establish a paid family and medical leave policy. A big core of that movement is around parental leave, which is important, but we need to ensure that paid leave covers the spectrum of caregivers. And we know that dementia care, as evidenced by the shifting demographics and numbers, will become even more important over the next 10 years. And so this is the policy that we really need to have in place, to provide some support to these caregivers, particularly these younger caregivers, who are balancing work and providing care. In fact over 60% of dementia caregivers are providing care while still in the workplace. And so that leads to a lot of stress, a lot of career implications. And so we’re really passionate about advancing solutions like paid family medical leave.
JANA – Uh huh. The amount of money spent on the cure is really staggering when you compare it with the amount spent on support and services. I’m not trying to downplay the importance of finding a cure, but how much is the US government currently spending on caring for Alzheimer’s patients, for instance, through Medicaid and Medicare versus finding the cure?
JASON – That’s a really great point. And it was much, much lower 10 years ago, before UsAgainstAlzheimer’s was founded. So when we were founded in 2010, we were spending around $400 million in Alzheimer’s research through NIH. $400 million. At the time, we were spending north of $200 billion in Alzheimer’s related care through Medicare and Medicaid.
JANA – You’re saying that Medicaid and Medicare was spending 200 billion in reimbursements for Alzheimer’s care?
JASON – Well, the total cost to the health care system. So not just reimbursements. So that the total cost to the health care system was north of 200 billion, and we were spending around 400 million in Alzheimer’s related. So for every penny, that we put in research, we’re spending over $1 in care related costs to the health care system. And so now that’s changed, thanks to the work of advocates like UsAgainstAlzheimer’s and other big organizations and advocates in the Alzheimer’s space, and also through the championship of bipartisan congressional leaders.
JASON – We’re now at north of $3 billion spent in Alzheimer’s-related research, and about $290 billion in Alzheimer’s-related care. So it’s still a drop in the bucket compared to the care, but it is a major uptick in federal funding.
JASON – What we do know is that, you know, if we really want to curb the costs of Alzheimer’s in this country, and the cost not just in the US but also across the globe, because this disease doesn’t stop at the US border, is that we must find a cure. Once we find a cure, we’re going to see the prevalence and the cost of Alzheimer’s drop substantially. Even if we’re able to delay the onset of Alzheimer’s by just five years, you would see significant cost reductions. So investing in research is vital. But at the same time, we have to do better for those folks living with the disease today.
JANA – Right. When I asked that question, I was actually thinking about how we support caregivers, and how we support caregivers of people with Alzheimer’s and provide services for them and supports for the caregivers, rather than focusing on the cure. And I get what you’re saying, and it’s important. I guess my comment is that it just seems like we spend so much on Race for the Cure, and that is such a worthy thing. But in the meantime, there are people who are living with Alzheimer’s and dementia right now, and people caring for them right now, who really are not supported with respite care and things like that. So that’s kind of where I was getting at with that question. We spend a lot of money looking for the cure, but less on care for the caregivers and the patients.
JASON – Yeah – no, I totally agree. I totally agree. I think there needs to be a both/and approach, where we need to be investing in research, because a cure is going to deliver our ultimate ability to reduce costs and emotional strain on the millions of people who are yet to develop Alzheimer’s but are destined to by demographics and by sort of the history we’ve seen of the disease. So I think it’s vital to invest in the cure.
JASON – At the same time, you’re absolutely right. I mean, we have, again, 6 million people living with Alzheimer’s today, many of them at the moderate to advanced stages of the disease who require 24/7 care, who need support. And we don’t offer enough support through programs. Like, you know, the Administration On Community Living does a great job, but they would do an even better job if they had twice the budget, right? So there’s a tremendous need to have a both/and approach.
JASON – You know, at the same time, we need to invest in better care, policy to support caregivers like paid family medical leave, we also need to do much better in investing in public health education around Alzheimer’s and dementia, and around the things that we can do to reduce our risk for cognitive decline. So that’s another area that is under-resourced today. We’ve seen, thanks to the advocacy community, the CDC has now seen a small uptick in their budget to invest in a public health response to the Alzheimer’s challenge.
JASON – So here are three areas where, they are both vital to our nation’s ability to respond to Alzheimer’s, because whether we respond or not, it’s here and it’ll get worse over the coming decades, and all three areas are under-resourced. So I think this is where we have to continue to place pressure on our policymakers.
JASON – We’ve seen a lot of great improvement and momentum around research. Now we need to take that and diversify it, to increase caregiver support and also to increase our public health response. And so that’s the role of the community, right? The community needs to say we can’t stop at research. We have to keep going. And we have to keep placing pressure on our elected officials to look at the bigger picture when it comes to dementia funding.
JANA – Amen. So Jason, you guys at LatinosAgainstAlzheimer’s are doing great work. For folks who are listening to this podcast, how can they learn more and get involved?
JASON – Great. We’d love to have folks get involved. You can go to UsAgainstAlzheimer’s dot org. That’s UsAgainstAlzheimer’s dot org. And you’ll see all of our communities, including our Latino Network, you’ll see our African American Network, our Women’s Network. And then there’s an advocate corner, where you can sign up and you’ll get our information and opportunities to engage.
JANA – Great. Well, I want to give you the opportunity to offer any last thoughts before we close. Anything you’d like to leave the listeners with?
JASON – Just, thank you for being part of the movement and for doing your part to help listeners better understand Alzheimer’s and the different challenges, the multi-faceted challenges, and for being a supporter and an advocate and a champion of caregiver support. I think that’s vitally important. And so thanks for that work, and we look forward to continuing the storytelling collaboration.
JANA – We’ve been speaking with Jason Resendez, Executive Director of LatinosAgainstAlzheimer’s Network, the first ever coalition of community-based organizations in the United States to coordinate Alzheimer’s awareness and brain health promotion efforts in the Latino community. We’ll have a link on the Agewyz website to LatinosAgainstAlzheimer’s, but as Jason said, you can dive in right now and check out some of the wonderful initiatives they’ve got underway, and just learn more about what they can help you with in your caregiving journey with your loved ones, by going to UsAgainstAlzheimer’s dot org. Jason, thank you so much for being on the show and for all this amazing, wonderful work that you’re doing to support caregivers and folks with dementia and Alzheimer’s in the Latino and African American community.
JASON – Thank you.