 and I'm excited to journey with you as we learn how to take your health back. Today we show here from L.J. Duenas, the executive director for Alzheimer's Association. Our talk is titled Alzheimer's and Dementia Untangled, Concern, Care and Our Hope for a Cure. Today we shall be made more aware of what this disease is and how many loved ones are affected by it. Welcome L.J. Aloha Wendy and thank you for having us and for all that you do to raise awareness about many causes that impact our communities here in Hawaii. So mohalo. Oh, thank you too L.J. for your great heart, your servant's heart. I know we've worked on many projects from American heart to American diabetes to Alzheimer's and I'm sure there's many more causes that you will also lend your heart to as you love your community so much. So L.J., let's get started. I know you're the executive director for Alzheimer's Association. So tell us what is Alzheimer's? So Alzheimer's disease is a brain disease and the most common form of dementia. It is not a normal part of aging. I wanted to stress that. And dementia is not a specific disease. It's an overall term that describes a group of symptoms. So think about dementia like you think about cancer. There are many types of cancers and there are many types of dementia as well. So there are many causes of dementia but Alzheimer's is the most common form of dementia making up about 80% of all dementia cases. And most people who have dementia have it because they have Alzheimer's disease. So I wanted to talk a little bit about where this term came from Alzheimer's and Alzheimer's disease was named after Dr. Aloysius Alzheimer. He was a German doctor who first described this disease in a landmark study about one of his patients, Ms. August Dieter. And in the photo perhaps that is shown you'd be surprised to know that Ms. Dieter is only in her early 50s. She can no longer speak, right? Carry on a conversation. She no longer looks you in the eye. She no longer knows who she is or her loved ones are. You try to feed her and she won't know what to do with the food that is in her mouth. And this is dangerous and she sleeps a lot. In fact, all day, many days. And at the very young age, Ms. Dieter dies at age 55. So it's a very debilitating disease. And I can quickly talk now about what happens in the brain for persons with Alzheimer's. So after Ms. Dieter passes away, Dr. Alzheimer's does an autopsy of her brain. And in this study, he finds three hallmarks that we now know are the hallmarks of Alzheimer's disease. One is the buildup of amyloid or what we also call as plaques around the outside or spaces between nerve cells. And then also the formation of tau or what we also call tangles inside of the cells. And this causes the brain to atrophy or to shrink, particularly in the areas important for memory, planning and behavior. So it's the destruction and death of nerve cells that cause memory failure, personality changes, problem carrying out daily activities and other symptoms of Alzheimer's disease. And so, you know, LJ, I know we see the two slides with the normal and the brain with Alzheimer's. What is the trigger for this to start happening and at what age does this start happening at? So we do know that the hallmarks of Alzheimer's, whether it's amyloid or tau presence in the brain can happen long before symptoms occur. What causes the buildup of these proteins and of normal tau in the brain, we still don't know. But there are many factors that we're studying. It could be environmental factors. We know that what's healthy for your heart is healthy for your head. So we know that diet, physical activity, cognitive activity is going to help in preventing or delaying the onset of Alzheimer's disease like it does for many diseases. Well, I mean, she was just 50 years old and diagnosed and passing at 55. That's incredibly young because normally we think of this as a older person's disease. And so I'm sure that's why you highlighted her history because she was so young. Yes, and this happens today. There are folks as young as 40 who develop younger onset Alzheimer's. And what's interesting is that in younger onset Alzheimer's, so young folks who do develop Alzheimer's disease, the rate of progression is significantly exaggerated. Wow. Oh, that's even scarier because you would not usually even look for that diagnosis in such a young person. So, but you're saying that when they do contract it or they are diagnosed, it just goes rapid through their body and they go down a lot faster than if they were an older person? That is correct. So the folks who have younger onset Alzheimer's, the rate of deterioration of the brain is a lot faster than those who typically would be diagnosed with Alzheimer's later in life. Wow. So I know that you have a big task at hand because the numbers keep growing. And I know we're gonna talk about fundraising, but I just came to my mind like, come on, let's go raise more money so we can get more studies and more knowledge about this because it's affecting our keiki and we need to make an impact on a positive direction for that in itself, as well as taking care of the kupuna community. So I wanna ask you, how does Alzheimer's impact our communities here in Hawaii? Well, Wendy, Alzheimer's is a public health crisis across the United States, across the world and of course here right here in Hawaii. It will cripple our community if we don't take hold of this disease. And today we know that nearly 100,000 kupuna and others in Hawaii are impacted by this disease. 29,000 are diagnosed with the disease, while another 65,000 are their caregivers. We also know that this is a very conservative number as we do not have a true handle of actual people with the disease as many people still don't know what to look out for and simply think of memory issues as a normal part of the aging process. Like we all have in the past, right? We thought that just memory issues were just a part of aging. And we have seen there are a very high percentage of folks over the age of 100 who are very cognitive healthy. Yes, I know a lot of that has to be related to of course environmental lifestyles and then of course diet. And that's what we study with the Blue Zones. And why are they or that community able to live past 100 with great memory and physical abilities? So there's a lot of studies that need to continue to be done. And I'm sure that you are all working so hard in your association to help us find out pure the cause and what should we avoid as we're growing up so that we won't be affected by this disease called Alzheimer's. So I know you talk about the kupuna. So what impact does Alzheimer's have on our kupuna? Well, the impact to our kupuna is great. It's unfortunate. We know that in Hawaii, one in three kupuna who die dies with Alzheimer's disease. So dying with Alzheimer's disease, however, is not the same as dying from it. But even when dementia isn't the direct cause of the disease, it can be the final blow. So speeding someone's decline by dealing with health care, medical health disease, cancer or other serious illnesses. So one thing again, if you remember one thing from today, it should be this, Alzheimer's is not normal aging. Yes, age is the primary risk factor, but age is also the primary risk factor for many types of diseases such as diabetes, heart disease, cancer. And no one thinks of cancer as a normal part of aging. So, LJ, can you repeat that one statement again that you want us all to remember about Alzheimer's? Please repeat it. Yes, so one thing I would like for everyone to take away from today is knowing that Alzheimer's is not normal aging. Okay, all right. So that's good to know and that's something that we should be all aware of. And as you mentioned with the keiki, I mean, that's really spooky in my mind. So I know we have a lot of work to do. And I know that as I said, you're going to, as an association, work towards finding their cure. So hurry up, lots of work to do, I know LJ. So can you put a dollar amount of what boy shall be spending in regards to Alzheimer's? Yes, so Alzheimer's is very expensive like many diseases, right? But this disease is the most expensive disease to treat and manage in America. And right here in Hawaii costs for Alzheimer's in Hawaii can range anywhere from $11,000 to $70,000 a month. So it costs us about $2 billion a year, $240 in Medicaid costs, another $200 million in Medicare costs, and then $1.6 billion in caregiver costs, which is unpaid care where family members are providing care for their loved ones who is impacted by this disease. So it's not sustainable. We need to get a hold on this disease and support our cocoon and their caregivers who many of which have been financially burdened in addition to the emotional, physical toll that this disease has. You know, I was going to ask you that question and then of course you broke it down for us, but I would want to surmise that the greater cost is not just the disease, but it's the care and the caregivers around the patient. And as you said, the family members, they get so heavily taxed with their time spent, so they have to, when usually the local families, they don't want to suggest having an outsider come into care give for their parents or their loved ones, but in this case, because it's such a demanding disease, so people have to lean towards hiring out and getting caregivers to come in, is that correct, LJ? Yes, yes. Or they decide to leave their job or they decide to take a part-time role because they can't afford to hire someone to come in and provide that support. And many families want to keep their cocoon at home, yeah? So that they can be, and that comes up. Yes, especially here in Hawaii with the families all nested into one home and all the multi-generations in the home, but it just gets very, very tough at times. And I know many families that are dealing with this and trying their best, but it does get trying. So anyone out there, if you know anyone having to manage this at their home, you know what? Ask some family member to watch and you ask the caregiver, the primary caregiver, hey, let's go have a cup of tea and just take them out for a drive. I think that's really good therapy. What do you suggest, LJ? I couldn't agree more. I think that's one thing you can do to support caregivers is giving your time to provide them with respite. Yes. Or go to the grocery store for them or pick up medication for them. Or you take, you give them a few days or I'm sorry, a few hours out of the day and you provide the care for their loved ones that they're providing care for. That's a great suggestion. Yeah, some simple acts of kindness that you would normally do, but in fact, you should really focus on this more so because in fact, any caregivers, just give them a break. I go to the store, I buy them mochi or chocolates and just give them a, I love you gift and no rhyme or reason why, but just because. So I know that they promote a lot of that at the Alzheimer's Association. So LJ, as we speak of many diseases, we work together with American Heart Association, but we all know that heart disease has always been the number one killer of mankind. So where does Alzheimer's stand in this toll? So Alzheimer's disease in Hawaii is the fifth leading cause of death. It is the sixth leading cause of death in the United States, but Alzheimer's is the only disease among the top 10 chronic conditions that cannot be prevented, cured or even slowed. But we do hope that this new therapy that we'll talk a little bit about later that has been approved for use may help. We also know that while death rates for other chronic conditions like heart disease, which continues to be the number one killer, death rates are decreasing, but Alzheimer's disease, the rates of Alzheimer's disease death rates is increasing. So the figure on the slide that you saw earlier, about 145% increase over the past 19 years in Hawaii is actually 300%. So there's a significant higher percentage of death in Alzheimer's in terms of growth for the last 20 years. That's, well, you're the right man behind this organization to help them and lead them through these times and work as hard as you do on anything that you're passionate about. So thank goodness Alzheimer's Association has you on board with them. So congratulations for making the decision and continue on with that great work and the work ahead. So I wanna ask you, how can folks know if they have Alzheimer's? How does one know this? So there are 10 signs that we look out for and I'll try to summarize all of them for the sake of time. But if anyone is looking for information about what these are, it's at alz.org slash 10 signs. So they could always visit us there to take a look at those, a list of signs to watch out for. But the very first one is memory loss that may disrupt daily life. So one of the most common signs of Alzheimer's disease, especially in the early stages is when someone asks questions repeatedly over and over again in a span of a minute, two minutes, three minutes, the same question. For getting recently learned information or for getting important dates like birthdays, their birthdays, their wedding anniversary. So that's a first sign or one of the signs and symptoms of Alzheimer's disease. And just to put into context, what may be a typical age related change would be sometimes forgetting names or appointments but remembering them later. Another sign is challenges in planning or solving problems. So some people with Alzheimer's may experience changes in their ability to follow a plan, directions or work with numbers. They may have trouble following a familiar la-la recipe. They've made for decades or keeping track of important bills like missing their mortgage payment or paying their Hawaiian electric bill. And what's typical age related change is maybe making that occasional error when managing finances or household bills. Another sign would be difficult completing familiar tasks. So people with Alzheimer's often find it hard to complete daily tasks. Sometimes they may have trouble driving to the neighborhood long strokes that they've been going to for the past 30 years or organizing a shopping list or even how to use a mop. A typical age related change would be something like occasionally needing help with the microwaves or finding a channel on the remote. So those are some signs and symptoms of Alzheimer's disease. The other symptoms are also like confusion with time and place. So people living with this disease can lose track of dates. They can lose track of the passage of time. So they may have trouble understanding something if it's not happening immediately. Sometimes they may forget where they are or even how they got there. Typical age related change would be maybe confusion about what day it is but figuring out later. So Alzheimer's disease is not forgetting where you parked your car but if you even had a car to begin with. So you're lost. Yeah. I won't go over the other signs because that will take us past our time but again, if anyone has any questions feel free to give us a call or visit aoc.org slash 10 signs. Wow. And you know, when I was looking over that list, of course, we would always make jokes about, oh yeah, brother does, he always does that but when I listened to them and I really sat back and listened and went through that list, it's not a joking matter at all. And yet, some of us may experience one or two of these and I think we're gonna say, oh maybe, and we may joke about it but it's not a joking matter. So as I said, really watch your family members and your loved ones. I mean, as you mentioned, it doesn't matter how old or young they are but when you notice these symptoms and seriously notice them without laughing and making comments about it, just really watch them and then you can more or less assess what's going on really in their lives but as I said, it could be a fun list and we would always make fun of these things but that's where we wanna end it but it's a true and serious issue that we have to be more seriously mindful of. So thank you, Aljay, for going through that list and giving us a little bit of clarification about just the simple things that we may take for granted. So thank you so much. So what is the Alzheimer's Association doing about this public health crisis? Oh gosh, where do I start? We do a lot, we do a lot in the community and I'm extremely proud to share with you that the Hawaii team, our staff and volunteers, they've done even more through this pandemic than we ever have to support our program caregivers. We of course provide information and resources about this disease and how to access services whether it's through the association or through our community partners. We offer programs, so we offer education and training programs for caregivers or persons who are living with this disease or really anyone who's interested in Alzheimer's and other dementia. Topics that are typically covered, covered 10 warning signs, what's normal, what's not normal aging. We also go over legal and financial planning because when someone is diagnosed with Alzheimer's disease or any other form of dementia or cognitive impairment, there are certain things that have to happen to ensure that they are protected and their family is protected. And because of COVID, we've developed COVID-19 and caregiving programs to support our group and their caregivers who really had to become professional caregivers because adult daycare was closed, folks weren't able to come into the home to provide respite or nursing care because of the risk of infection. So we reach more families throughout the pandemic than we have or have before. And I know that each and every one of those Kukuna and caregiver who reached out to us were extremely grateful. We also offer support groups. So like any support group, this is a peer led support group where folks, particularly caregivers, get together, they talk story, they share challenges and successes and they also help decrease social isolation because they have a hui the other they can kind of talk to, call on each other if they need additional support. And we've done this virtually and telephonically throughout the pandemic and we are looking forward to bringing this back in person once we are able to. And I believe our target date is August. Wow. We also offer care consultation services. This is individualized care consultations for families. We offer a 24 seven helpline. Anytime anyone needs assistance, give us a call. And we are now recently working with health systems to ensure that patients have the tools and resources they need to support their patients. Wow. Wow, is that all you've been up to in LJ? That's a lot and that's, it's so comprehensive what you just discussed. But really what stands out in my mind is the legal counsel that you're offering that is so valuable, especially with these patients because you have to catch them where they're still cognizant of their personal belongings and what they want to have done with what they have acquired. And it's so important to catch it early on. And so the legal counsel that just, you guys covered it all. I'm so ever grateful that you guys are thinking out of the box about all these different circumstances around the patient. So congratulations again to addressing that the legal counsel part. I know you also mentioned a little bit about this drug at Johan Helm. Can you just share a little bit about that drug with us? Happy to Wendy. So this drug, it's an antibody therapy. So what this means is that it targets a hallmark of Alzheimer's disease and particularly amyloid. So what this drug does is that it removes amyloid from the brain. Now, this is not a cure but this is the first FDA approved drug that delays decline due to Alzheimer's. So this is certainly a victory for all people who are affected but I wanna be very clear that this drug is only effective in the very early stages of Alzheimer's disease. This study only shows efficacy in the early stages and not in the later stages of the disease. And this is why it's so important that diagnosis is done timely. So some of the exciting factors about this new approval is that also there has to be a diagnostic test. Currently, there's not a true diagnostic test that is approved by the FDA that would easily be used to then prescribe this particular therapy. So we're excited. This is only the first. We know there's gonna be a second and a third and we know that eventually it's not a matter of if but when we find a cure. Wow. And again, you nailed it on the nose when you said it has to be taken in its early stages. So then again, we're all thinking, well, how do we know? How is it diagnosed? So that's something that you all have to be working on rather quickly as well. The testing and the diagnosis, the early diagnosis of dementia within our loved ones. How do we know, right? Yes, very, very true. Wow. I know that you guys have many events coming up because as I said, let's get out there, raise more funds, raise more awareness. But of course, like I said, you need money for awareness and programs and education. So what are the events coming up for the Alzheimer's Association and how can we out there help you and the association? Well, Wendy, coming up this fall is our Walk to an Alzheimer's Hawaii events happening all across the state on Hawaii Island, on Kauai, on Maui and on Oahu. So we urge folks to visit us at ALZ.org slash walk and register for a walk in your island. We also do encourage fundraising, but it is free to register. This year, we are bringing back an in-person event, but we are also including a virtual component for those who are not comfortable in gathering. But we're fortunate to have leaders, leaders like First Lady Dawn Amano Ege who is our Honorary State Walk Chair, our Executive Chairs, Dr. John Henry Felix with HMAA and Trisha Minieros with the Plaza Assisted Living and our many other event walkchairs across the state that's helping us plan, recruit and of course do all the logistics. And I'm sure you're very familiar with that because you've led amazing walk and tour events with the other nonprofits that you've been a part of. So we're excited and we know that people are gonna come out in full force, support the efforts and will raise funds, raise awareness so we can support the work that we do across Hawaii and the United States. Wow, and I know the color of Alzheimer's is purple and we have a dear friend, Kalani Peah and his favorite color is purple. And I understand he was very involved with the Alzheimer's Association as well. Yes, he still is. He was one of our purple ambassadors this past June. And Kalani Peah has a very impactful story. His grandmother lives with Alzheimer's disease and his connection to her is music. It's beautiful. I love the story. I love the story. So LJ, how can folks out there get a hold of Alzheimer's Association? Well, they could always call us. Like I mentioned, 24-7 at our helpline which is 800-272-3900, our local number which you will see on your screen by email or just visiting us on our website at ALC.org slash Hawaii. We have a ton of information, but give us a call 24-7. We are always there to support Hawaii and our other Pacific Island territories. Wow, and I know that you have such great media skills so please share that with us as well. Yes, so we are always trying to raise awareness and we know that social media is powerful. So please follow us on Instagram and on Facebook and our tag is at ALC Hawaii. So please like, share us, and we look forward to supporting you and your families whether they have Alzheimer's or another form of dementia or if they're just interested in learning more about this disease. Wow, thank you so much, LJ. We'll have to leave it there for now. You've been watching Taking Your Health Back on Think Tech Hawaii. Mahalo to LJ Duanez, Executive Director of Alzheimer's Association. Thank you so much for talking story with us and for sharing all this important information about Alzheimer's and the science to look for. Mahalo and we'll see you again in two weeks. Aloha everyone.