 Welcome, and aloha. I'm Mark Schlaufe, the host of think tech Hawaii's law across the sea program. Today we have a special program. We are going across the sea of humanity to talk the talk about Alzheimer's disease and how to walk the walk board secure. My guests are Dr. Bridget Collins and Rebecca Howell. Dr. Bridget Collins is a board certified family medicine physician practicing on Kauai. He's a member of the Hawaii Academy of Family Physicians and also a fellow of the American Academy of Family Physicians. Rebecca Haleron is the manager of the Walk to End Alzheimer's for the aloha chapter of the Alzheimer's Association here in Hawaii. I've asked Rebecca and Bridget to share their knowledge and expertise with us. Rebecca, I'm going to start with you. We often hear about Alzheimer's disease and also about dementia. I'm not sure we really have a clear picture of what it is. What are they? And what is the difference, if any, between those two terms? Yeah, great question, Mark. These terms are often used interchangeably. Basically, the difference is that dementia is an umbrella term used to describe a range of symptoms that are associated with cognitive impairment. So this would be changes in memory, thinking, or behavior. And we do have a graphic that I wanted to pull up on the screen here. So if we look here, we can see that Alzheimer's is the most common cause of dementia, making up from about 60% to 80% of all cases. So other types of causes of dementia include lewy body, vascular, frontal temporal. So that's these other types that you'll hear. So while the terms are used interchangeably, it's more so that Alzheimer's is a type, it's a cause of dementia, which is more so just a description of symptoms. Okay, so we'll learn a little bit more as we go along. Now, you are involved with the Alzheimer's Association. What does it do here in Hawaii? How does it contribute to our community here in Hawaii? So the Alzheimer's Association is the worldwide leading voluntary health organization dedicated solely to Alzheimer's care, support, and research. We're actually behind only the US and the Chinese government in terms of Alzheimer's research funding. We currently have over 650 research projects spanning 39 countries. And there's a little fun fact that we like to say that any moment of the day, there's someone in a lab doing a research project trying to find a cure for Alzheimer's disease. So I wanted to backtrack a little bit before we dive into here in Hawaii and give you guys some facts. Alzheimer's disease is the only disease in the top 10 deadliest diseases in America that has no known cause and no known cure. Don't know how to slow it. Don't know how to treat it. And it's the only one out of all of the deadliest diseases. It kills more than breast cancer and prostate cancer combined. And one in three seniors die with Alzheimer's or another type of dementia. Now here in Hawaii Alzheimer's is very prevalent. And we are predicting an over 20% increase in the next four years. We're jumping up to about 35,000 people with dementia by 2025. And this is due to the fact that we have an aging population. As the baby boomers age, the number of people with dementia will also increase. So therefore resources need to increase with it. The port needs to grow, research needs to continue, which means our fundraising must come and meet that demand. So beyond research here in Hawaii, the association provides free local resources to residents living with Alzheimer's disease and their families, including their caregivers, which is such a big part of the disease. So some of the opportunities that we offer is support groups. We do education classes and seminars, professional trainings, so anything from legal and financial advice to just Alzheimer's 101 to effective communication strategies. We provide care consultations, referral services, and a 24-7 helpline. And the way that we're able to continue offering these free programs to local residents and their families is through our annual fundraising campaigns, which I know we'll get to in a little bit. Yeah. Well, I want to ask you, you are involved in the walk to end Alzheimer's. And I'd like to know what is it? And how does it contribute to research and provide support to our community here in Hawaii? Yeah. So the Walk to Alzheimer's is our biggest annual signature fundraising event. Across the nation, it's held in over 600 communities here in Hawaii. We have four walks on our major islands. It's a fun, family-friendly event where the community gathers together to thank and honor our caregivers, remember those we've lost to Alzheimer's disease, support those that are still battling the disease, and raise money for this incredible cause. It's hosted every fall, so we still have a few months away. And the funds that we do raise contribute directly back to our community. And like I said, are able to provide these support programs, classes, referral services, all that to folks at no cost. And there was a photo that I saw of the group. What is this? Yeah. So this was our walk back in 2019. The walks have just continued to grow year over year. There's some of the biggest charity walks in the state. This is a photo from our Oahu group actually. And something that I have found interesting, profound is that while I am so excited that we've had such an increase in support, I've seen participants almost double across the state. What that means is that there's that many more people being touched by the disease. There's that many more people that it's affecting personally. And that's why they're showing up. And that's why they're wanting to fundraise and participate. So we love this support and we love participation. But you have to think that that goes hand in hand with how many people it's impacting and why we have to continue fundraising. Yeah. And I kind of want to go into that a little bit now with Bridget. It seems like there's a lot of people that are aware of Alzheimer's. And in your family practice, I mean, is there a difference that you find between Alzheimer's and dementia in the practical medical sense? What are you seeing? Well, first, Mark, thank you for inviting me this opportunity to talk about Alzheimer's disease, which is it already has such a big impact on families and individuals. And that's only going to increase in the next 30 years or so. But I think in practice right now, due to what we have available to us as far as testing and treatment, it doesn't make a big difference what kind of dementia you have at least early on. And when we're dealing with mild cognitive impairments and early stages of Alzheimer's dementia, we only have treatment testing that we use in like questions and assessments in the office and common use. And there's only four medications, well, there's five because one's a combination, but there's really only four medications right now to treat and dementia. It does matter some because if you have like a low body's dementia or something from Huntington's or Parkinson's, there's different treatment. So in practice, what we do is we find cognitive impairments and dementia. And then we do some testing to make sure we're not dealing with depression, anxiety, things like multi-infarct dementia, which is usually it's a cardiovascular risk factor. So hopefully we're already working on that anyway to prevent heart attacks and larger strokes. And if there's family history of something like Parkinson's or Huntington's Korea or Lui by dementia, then we address all the things we can and we treat, you know, all these other aspects of the person's well-being. And then once we've kind of addressed all that, then we're just doing the best we can with what we have available now. Well, how do you diagnose if somebody has Alzheimer's? How do you make that decision? Well, so for me right now, I basically say Alzheimer's type dementia because I don't have a way to really diagnose Alzheimer's just yet. Historically, the only way we could diagnose Alzheimer's was after death. We do have some really hopeful things, though, that are happening in the research community, which just aren't available yet for everyday use because they're expensive and only available in certain places. But there are some biomarkers and they're able to tag amyloid now. So they can do a PET scan to see how much amyloid plaque is existing in someone's brain, but that's really just at big research centers right now. But I'm hoping that because they're doing all this work, they're able to find more tests that we can do with just blood work. The other biomarkers are mainly available through lumbar puncture, which is also an invasive procedure that most people don't really want to have one of those unless they really need to. And I mean, is this something that you develop in stages? Are there stages of Alzheimer's? I mean, can you tell somebody is developing it? Yeah. So, well, first of all, the number one risk factor for getting Alzheimer's diseases age. So after age 65, we see the incidence increase. And it starts at like 3.5%, I think at 65, but it goes up to like almost 20% as you get like over 80. So we can see that age is part of it. There's one genetic marker, but it's really rare. So it's not really something that comes into play all the time. And the phases are basically people start to have trouble with things they never had trouble with before. Forgefulness, that's more than just the usual getting lost. Another one that sometimes happens earlier is just the inability to do something with your hands, like a skill that you were really good at before, like knitting or fine work. And that's a problem with the brain communicating with your hand. Like you're telling it to do something, but it's just not doing what you want it to do. And these are all symptoms of Alzheimer's. It does range from mild to moderate to severe. And most people that are still living at a home are in the mild, maybe moderate phase. Once people get pretty severe, it's more end stage. And they're not, the individual is no longer really communicating, no longer really doing much of anything. So for the end Alzheimer's becomes very very exclusive. It's a word I always like to use with it because it's something people can understand. And is there, I mean, does it help to to diagnose early? And is there something that you can do if you diagnose early? How does that work? Well, for me in primary care, I think the earlier we know someone is having an issue, we can first of all, ensure that we're maximizing their nutrition exercise, other aspects of treatment, rule out other causes of issues with cognition. And then we can start the medications that are available. So none of these medications stop the progression of the disease or cure it or really slow it down. But what they do is they help control symptoms, which can allow a person to stay at home, you know, taking care of their own physical, basic physical needs a lot longer than if we don't do anything. And it varies from individual to individual. But when usually we start people on one of the colonist race inhibitor medications first, and then over time, depending on how they're doing, we'll add the NMDA antagonist, which is commonly known as Namenda, to that treatment plan, with the goal of allowing people to, you know, age in place, spend time with their family. And the other thing that I think is really important, Mark, and this may be your alley more, but is it gives people a chance to plan and address issues in a non-confrontational, more gradual way in, you know, making their advanced health care directive, for example. Right. So early diagnosis, some possible treatment is good. Rebecca, would you add anything to that? Or would you have some comments about that also? I think another factor is early diagnosis allows, at least on the research front, to be involved in clinical trials. And I think that's something that a lot of times people don't think about. And, you know, with these clinical trials, that gives all research projects the opportunity to get one step closer to finding a cure or finding a treatment that works. And we are kind of like, we're at the doorstep, we're knocking on the door, we're there, we're just not quite there yet. We are making progress, it's just, it's a long road, so. And Bridget talked about some treatment. I mean, are there present drugs now available for early stage treatment that you know about, Rebecca, or that you, I mean, would you add anything to Bridget? In terms of the drugs themselves, no, Bridget was right on with the, well, we have technically four, but five. That again, just treats the symptoms. So they do nothing to slow it. Some exciting news that I guess we can discuss now is that the FDA is reviewing in June, a drug called AgiCanimab that the association is fully behind. And that would be the first of its kinds that could blow the progression. That would be the first available drug. So should that get approved, then that would be, you know, kind of the first huge, hopeful treatment that we've ever seen. So we'll see how that goes in June. What was that called? The drug? It's called AgiCanimab. Okay. And it would help to, it's the brain, is that what it would be used for, either one of you? Okay. So I'm not as familiar with where we are on that particular drug. But that would be the plan. Yes. What they've been developing are drugs that will either directly inhibit the creation of the plaques or will help to slow down the progression of the plaques. And so far, unfortunately, most of those things have not made it into phase three trials. But this is very exciting news. So it's basically directly attacking the creation of the plaques. Okay. And you've both talked about drugs. Are there any other tools that have been mentioned besides drugs that would be helpful and useful in your practice, Bridget, or just practically? Sure. So there have been several trials. There's actually an ongoing trial called finger, which is, oh, golly, I'm not going to remember what it stands for, sorry. But it's basically an ongoing study of lifestyle modification and being a little more structured in that to see how much of an effect it can have. And it looks at nutrition, exercise, sleep, and cognitive and social interaction. And already the first two years study showed some positive results with the more, you know, following the more guideline directed treatment, so that it's actually being done all over the world right now. They've expanded it. And the other thing that they're looking for just in general, I know they're looking for more minority people to participate in research studies that they've done like a phase where they had mostly, I guess, Caucasian people. So now they're looking to bring in more African American and Latino, Latinx patients for sure to help get more information like if these same treatment plans will work for these individuals. And, you know, the thing that's nice is that all of us can start working on our lifestyle modification now. You know, don't smoke, you know, be careful about using chemicals that can alter your brain's function and, you know, eat well, exercise, and try to get a good, you know, eight hours of sleep every night. Yeah. And, you know, I guess sometimes when we're young, we don't think that far ahead. And we do things that maybe we will regret later, you know, and that may affect our function. Now, I'd like to put that photo up again, number two, the one of the group. Rebecca, you know, there's a whole mixture of people in that group. I mean, they're young, old, all different races. And it looks like it's a good cross-section of our community. And what are some of the fundraising efforts that are you up to now, aimed at raising money for Alzheimer's research? Yeah. And you're right, that photo is, you know, it's very telling in that Alzheimer's affects anybody at, you know, any time from, I guess, middle-aged up, because we have early onset cases. And with that comes that, you know, it affects not just the children, but the grandchildren. And almost everyone is touched by it right now. Unfortunately, you're finding, you know, more and more people are like, oh, yes, I know someone. Yep. You know, I'm in the same same position. I'm a caregiver too. So now year round, we spend fundraising for this annual signature walk in the fall. And while we do have a ton of support from businesses through our corporate sponsorships, what I found in Hawaii in particular is that most of our support is from individuals. So it's just from everyday people who have nothing but a generous heart that they just want to help out. And it affected them so much that they will host rummage sales. They'll do virtual concerts. They'll do silent auctions. And, you know, email me for ideas. And they'll host concerts at restaurants and spend the year fundraising for this one day. And, you know, we'll send out emails and just spend all year trying to raise money for this cause. And the support that I've seen at least in this Hawaii community is it's incredible. And it's not just an individual effort. It's a family effort. It's a work effort. It's a whole community effort. I've never really seen anything like it. And people, I guess, could go on your website for your Aloha chapter and find out what's going on. You'd have your current events. Yeah, yeah. So on our website, you can go to ALZ.org slash Hawaii. And from there, you can do see everything from our, you know, our walk event and, you know, the different things leading up to that to everything on the program side. So the support groups where they're located, the education classes, the helpline number, all of our contacts to junior referral services or a care consultation. So everything can be found on the website. And now I want to kind of go back to some things you both have brought up and and when somebody in the family is dealing with somebody that's having problems, dementia, Alzheimer's or cognitive problems, whatever you want to call it, how do you talk to them? I mean, how do you convince them to give up driving or not to do something that could hurt them? What advice would you give families? Bridget first with you and then Rebecca. Sure. Well, you're right. And in the United States, particularly, giving up driving is a big deal because you sort of become homebound, I guess. But I will say a couple of things. One is we have, for example, in Kauai, we have the the handy ride situation with the Kauai bus. And so people can arrange for rides to doctor's offices for shopping and all those things. And I think one of the keys is starting early. In my personal experience with Alzheimer's, there's some phases that people go through where initially they know there's something wrong and they want to do the right thing. So in that phase, if you have someone who's willing to just give up driving, that would be perfect. They're not really safe to drive anymore and it's time to take away the keys and the car. Some people aren't that cooperative for a variety of reasons, but I feel that just starting early and repeating and repeating and then appealing to their sense of most people don't want to hurt anybody else. Most people wouldn't want to run over a kid or something with their car. And so if they know that they're less coordinated, if they know that they're not being able to do things even around the house that these go to do, then driving is obviously going to be more dangerous. One thing I read in my studies for this broadcast was that a lot of drivers start self-regulating prior to being diagnosed or even getting assessed for cognitive impairment because they have noticed that they need a little more time to make decisions. So they start driving more defensively and I actually appreciate this for a lot of reasons because I'm a lot more aware now of the studies that are going on and all that. So I'm grateful I was invited to do this, but I noticed that that was something that came up in the literature I was reviewing. And so I think a lot of people will self-regulate. I think if you have the conversations early, if you repeat the importance of it, that a lot of people would be willing to give up their keys sooner and not waiting until there's an accident. And okay, Rebecca, what would you have? It's complicated and I know I mean my family went through this personally with my grandma where it was her not accepting that she couldn't be independent anymore and wanting to go back to an apartment that we had sold from her of hers eight years ago. And it was kind of meeting them where they're at and saying, yes, it would be nice to go to the apartment. Maybe we'll go later and distracting her with something else than putting on some music she liked, changing the mood, chatting about anything. I mean it's really hard and these communication strategies are something that people, I think they don't realize comes with a diagnosis and it comes with the burden of caregiving. And it's something that you just kind of have to continually practice. And as frustrating as it is to be on this end, imagine being on their end. So I think it's always just meeting them where they're at and my grandma would say like, oh, I wish we could go visit blah, blah, blah. Let's go see him right now. He had been done for 15 years. So I say, yes, it would be nice to see him. It would. Yeah, that would be great. And so just, I mean it's really hard but those are just some of the things that I would say to her. Yeah, you know, that's kind of interesting the fact that you're dealing with cognition by cognition. You're using the problem and the solution. They're kind of interwoven. And we each, we have a couple minutes left and I want to give you each a minute to tell me how you've personally been affected. I mean, Rebecca, you talked about your grandmother, but Bridget, first you get your shot and then we'll close with Rebecca. Oh boy. Well, I have a varied experience in outpatient clinic and I was also medical director of a long-term care facility for a long time and that was my full-time job so I was in the facility all the time. And I, everything, Rebecca just brought up a point of not necessarily giving people reality checks. Sometimes that's too much for them and it just makes everybody upset. So I think that watching people change is so hard on the caregivers. And even the person, like I said earlier, there's a point where they know something's wrong and they can sort of deal with it and then there's the next level where they sort of know something's wrong but they just don't understand what's happening because they can't really remember what we've told them about their disease. And that's kind of a rough time for a lot of the patients and seeing people going through that is difficult. And then I think as things progress, if people have made their needs clear, then it's a lot easier for everybody. When people haven't taken the advantage of the opportunity to make their own plans and find an advocate that will stand up for them, it becomes really challenging for the end of life because somebody somewhere thinks that you're starving grandma or something when you're not. So I think it's really important to make plans. Rebecca, what would you have? I think that for me Alzheimer's just affects me very personally. Everyone has their story and mine is my grandmother who was instrumental in raising me. She raised me the first 15 years of my life and was my person and then our role switch. And I had to very quickly become that person for her, for her last well. And I just spent so much time in her home visiting her in her senior living facility and seeing the stages that people went through and it was heartbreaking. And I now plead to my friends, I plead to anyone that I talk to just how important this is. And it should be top of mind, top of everyone's mind. And as I've said, it's only going to affect more and more people. And so we need to do everything we can to stop it. And I know I spend my day every single day like I dedicate my work to this because my grandma deserves it. So I just thank you guys for letting me be on here and for the support. Thank you both very much for going across the sea of humanity with us and talking and walking. And hopefully we'll get to that cure. So Bridget, Rebecca, Aloha, thank you very much. We continually want to talk about what happens and where we're going. Aloha.