Kim
Hello everyone. I’m Kim Thiboldeaux, and it is my pleasure to welcome you to NEBGH Voices. Doris Phildor is a Health Systems Director at the Alzheimer’s Association. In this role, she leads organizational efforts to improve timely and accurate diagnosis, disclosure, and care for dementia across New York State. Specifically, she collaborates with health system leaders to implement system wide initiatives to improve quality of care and experience for people living with dementia and their caregivers. Doris, thank you so much for joining us today.
Doris
Thank you so much for the invitation. I’m happy to be here.
Kim
So, let’s jump in, Doris. Tell us a little bit about your own public health journey. Let’s get to know you a little bit and what inspired you to focus on Alzheimer’s and dementia.
Doris
Um. So the journey has been interesting. I will say that my mom is the one who got me into this. She unfortunately passed away from Alzheimer’s disease seven years ago, and watching her go through the process, and watching my dad, who was her caregiver, understand and figure it out, really kind of moved me to learn what Alzheimer’s disease was. I’ve been in public health for about 20 years. I’ve done early childhood development, maternal child health, nutrition programs, cultural competency, clinic systems change. But I had never heard anything about Alzheimer’s disease until my mother started experiencing signs and symptoms, so it was a steep learning curve for me, but I’m blessed that I’m able to honor her by doing this work.
Kim
Wow, that’s wonderful, boy. You’ve really cared for people across the entire lifespan.
Doris
I have, I have, I have, I see, I see that my work trajectory moved with my life trajectory.
Kim
That’s, hey, that’s fair. That’s fair. Um, uh, tell the group a little bit about our listeners, a little bit about the Alzheimer’s Association, and as a health systems director, your title. What does your day-to-day work look like there?
Doris
Sure. So the Alzheimer’s Association was founded around 1980 it was actually founded by groups of caregivers who were going through the journey and finding that they needed support, some more information and education, and has grown now to around 70 chapters nationwide. And what we do is we provide support, education, to the community, to clinicians, to researchers, to really look towards the vision of a world without Alzheimer’s disease and related dementia. So Alzheimer’s disease is one form of dementia. Dementia is the umbrella term for when people experience changes in thinking that impact daily life, and Alzheimer’s disease is the most common form. So while we are the Alzheimer’s Association, we support people throughout cognitive journeys to figure out what’s going on and how to support them and support their loved ones.
Kim
Yeah, I think maybe some folks don’t know that or recognize that. Let’s, let’s dive into that a little bit more so that we can better understand Alzheimer’s disease. So, ao for folks who may not be familiar, Doris, what exactly is Alzheimer’s disease that you’re as you’re suggesting, and how does it differ from other forms of dementia? And then, if we get a minute, I’d also like to talk about early-onset Alzheimer’s and what that is.
Doris
Sure so dementia is basically the umbrella term. So any time that you’re experiencing changes in thinking and abilities to manage your day-to-day, that is considered dementia. And there are different types of dementia. So why you’re experiencing those changes can be caused by different factors. So Alzheimer’s disease is one factor that might cause it. It’s defined by something called amyloid plaques and tau tangles that are found in the brain. The person who the word Alzheimer’s is named after was a researcher, and he identified it in one of his patients post mortem, and so they actually looked into the brain and they saw the brain changes. So that’s how Alzheimer’s disease is defined. But there are other reasons people might experience and changes in cognitive ability. So vascular dementia is increasingly common. So a person who might experience a stroke or changes in circulation may have, that may impact their ability to function day to day and to manage daily tasks or to manage their checkbook. Alzheimer’s disease is usually known by memory loss, so forgetting names, forgetting places, forgetting you know what you’re doing on a day to day. There’s also other forms of dementia, frontal temporal dementia, Lewy body dementia, that also fall under the umbrella because they also impact people’s ability to manage their day-to-day activities because of cognitive impairment.
Kim
So, so let’s talk about whether there are any early warning signs of um, that people should be aware of when it comes to Alzheimer’s and dementia. And really understanding, are there recommended screening tools? Who should be screened? You know, when should folks be screened? How do you differentiate between, “Oh, I can’t find my keys right” to you know, actually it is a diagnosis of dementia or Alzheimer’s.
Doris
Yeah, that’s a great question. And I think, you know, as my mother was going through her journey, I started thinking about things like, maybe I got it too, because I can’t remember this, and I can’t remember that that was stress related changes in memory and thinking. So I was able to recover. I was able to figure it out and find solutions. With things like Alzheimer’s disease, it doesn’t improve. It’s a progressive and fatal disease. So you might be able to put, you know, remedies in place, reminders, pill boxes, things like that. But ultimately, you, the person who’s living with the disease is not able to function independently and on their own, and there’s not a recovery for that memory loss that happens. There are tools to help prompt and support. But kind of those connections are, are, are lost because of the damage to the brain. Um, so in terms of early warning signs, I said it already, so is that memory loss? So there’s not, there’s difference between losing, forgetting a date or birthday, and just, you know, forgetting where you’re going you’re driving, and then you just don’t remember where you’re going, and sometimes you know you can retrace your steps and figure it out, but if you can’t retrace your steps, you can’t remember where you’re going, you don’t remember what that note was for. Those are the things that are, you know, really concerning and should be addressed with a doctor to do a comprehensive evaluation. Some other kind of early warning signs are like difficulty completing familiar tasks. So I’m an accountant, and now I don’t know how to use a calculator. I’m a baker, and now I don’t know the recipe for a basic pound cake. Managing finances, I’m confusing time and space. Difficulty finding words or with speaking and writing, I’m constantly misplacing or losing things, changes in mood and personality. So it’s not just one thing, it’s kind of looking at number of different ways that people kind of manage their life, and seeing if there are not just one change, but multiple changes that might be concerning, and then being able to kind of see if that improves over time, or if it’s continuous and and it doesn’t improve with changes in a change, right?
Kim
Um, Doris, what’s the latest, I mean, you know, a lot of our employers think about cancer. We know you’re supposed to get screened for, you know, breast cancer at 40 and colorectal at 45. What is the screening process for Alzheimer’s? Is there a standard screening that that’s recommended? Does everybody need to start to get screened at a certain age, or only if you’re showing signs and symptoms? Tell us about screening.
Doris
So, screening is, I would say the field is still kind of deciding when and how to best do screenings. What we we at the Alzheimer’s Association support is, you know, screening whenever you have a concern, talking to your doctor when there’s a concern. Um, not waiting for your doctor to bring it up, but bringing it up and sharing and documenting. I’ve seen this. I’ve seen that, or maybe a loved one would come with you and share some of those things. Um, there are assessment tools that are available. There are short assessment tools that can lead to kind of a longer, more in-depth assessment. So, you know, we we suggest clinicians start with the short ones, start with the short and sweet if they’re able to to pass that test. Then you can talk about brain health, you can talk about challenges, and then, you know, maybe implement some changes that might help them improve with whatever issue that they’re having, but then doing that regularly, testing people regularly. So those are, you know, if you have an initial concern again, bringing it up, having your provider do a screener. So for patients 65 and older, there’s the annual wellness visit that is a perfect time to kind of bring these concerns up and and do that annually. For younger than 65, it’s a little bit more challenging, because primary care is still growing in their knowledge and comfort level to address this. So you know, really not giving up if you feel that there is a concern, or if you see something coming up with a second opinion, a third opinion, and being able to really proactively advocate for that additional assessment and that additional support.
Kim
But it’s not part, it’s not a standard part of an annual wellness check for seniors or under Medicare or under…
Doris
It is for seniors. It is okay for seniors, but not if you’re under 65.
Kim
And so, talk about that for a minute. About early onset, also for early onset, what does that mean? What’s the age? What’s the definition?
Doris
Sure. Yeah, sure. That’s that’s a great question, because I think, again, as a person who’s aging, it’s kind of like, Is this me? Yeah. Am I going to be able to get the resources that I need to support myself and my family if I see some changes in my cognitive abilities? So basically, the largest risk factor for something like Alzheimer’s disease is age. So 65 and older, there is 10% estimate of the population, 65 and older has some form of Alzheimer’s disease or related dementia. And then as you get older, around 75 and older is 25% 20% and 85 and older is 30% so it increases as you age. So when you’re younger, it’s a smaller part of the population. So that’s why it’s called early onset, because we don’t expect people 60 and under to be experiencing these types of cognitive changes. So early onset is basically to describe when you’re seeing that sign. So if you’re under 60, under 65 that would be considered early onset, and those are usually not Alzheimer’s disease. Oftentimes, it’s another form of dementia. The most common for the younger audience, or the younger people who experience in these types of changes are is something called frontal temporal dementia that is most common and that that looks more like changes in behaviors and personalities. Um, but it’s not Alzheimer’s disease. It’s still more common in 65 doesn’t mean it doesn’t happen, but it’s less common at a younger age, early onset distinction.
Kim
Yeah, I know Doris. We still have a lot to learn about Alzheimer’s, but what’s the current thinking on A, risk factors, and then B, around sort of causation. I mean, do we have any idea what causes Alzheimer’s, and are there certain folks who have a higher risk profile based on genetics or lifestyle, or, you know, what do we know about that?
Doris
Yes to all of those. Kim, I feel like you’ve done your homework. So we are very excited that the Alzheimer’s Association is actually the Center of Excellence for dementia risk reduction. There’s a lot of science and research out there around what, what is the cause? Why does this happen in the first place? And what the Center of Excellence does is it looks at all these different studies and says, you know, which studies should we be identifying as best practices for how to improve brain health? So healthy habits for the brain? So there, there are actually 10 healthy habits. And anyone can go out to their local Alzheimer’s Association and get a handout or get a screenshot of these, and they’re basically the same things that you do to keep a healthy heart. So what’s good for your heart is good for your brain. So we highlight early interventions such as like staying in school. There’s, there’s a huge breadth of of studies and research looking at length of education and the fact that early childhood education, through staying through high school. Staying in school is protective. You’re building your cognitive reserves, you’re learning, you’re engaging socializing. That’s that’s a great start. We also want, as you age, for you to stay social, for you to protect your head. So we actually work very closely with the VA looking at, you know, traumatic brain injuries and the impact on Alzheimer’s disease. So that’s a risk factor. And there are studies that show that, and there are definitive studies that show that we also look at, you know, things that you hear all the time, manage your diabetes, manage your your heart, eat well, eat healthy, even sleeping well through the night can reduce your risk of Alzheimer’s .
Kim
Exercise?
Doris
Exercise, definitely all those things. So you’ve heard them before, right? So one of the keys is kind of not waiting to hit 65 in order to do those things. These are our messages that we’ve been hearing from so many places. Our family practitioners, our everyone is saying, eat well, do this? Do that? The challenge that we know that we live in a society that is not equal. So there are communities that are higher risk, and one of those communities are communities of color. People who are African American or black, Latinos have increased risk. African Americans have twice as much risk, and Latinos have one and a half times increased risk.
Kim
And what do we know about the why? Why is so?
Doris
The jury is still out honestly, on that, but if you look at the risk factors, you can definitely see a link. So when you think about communities of color, many of them have increased risk for hypertension, have increased risk and out of control for diabetes. You know, stress of being in this society that…
Kim
Food deserts, accessibility, affordability.
Doris
Exactly, access to healthy foods, access to safe places to play, access to quality education. So all of those impacted, um, so those are some of the factors that we’re looking at that increase. Some risk in those communities. We also know that women, two thirds of people living with and caring for Alzheimer’s are women. So what? What exactly is? Why is that? What? What there? So there are researchers that are are looking into that as well. So is it because women live longer? So that that’s why you’re seeing it. Is it because we got we’re stressed? Is that why we’re seeing it? You know, there’s still research even around heart disease in women, it looks different in women
Kim
And menopause?
Doris
And menopause, all of those things, right? There’s so many factors that we don’t know. So we’re proud that the Alzheimer’s Association, you know, funds a lot of research, but you know, at this time, research is really at risk, so we really want to keep that momentum going so we can identify why these communities are at higher risk, and what we can do to to mitigate lower the risk, as well as educate the population so they know how to protect themselves and keep their loved ones healthy.
Kim
And yeah, so I know we talked a lot about sort of prevention and lifestyle. So again, those reinforcements of those ideas, you know, get the salmon, get the spinach. I know in a minute, my watch is going to be yelling at me to stand up and walk around the block and all of those things. But I think you talk about social connection, about, you know, brain function and activity, keeping active. My niece is getting her masters this Friday, so I’ll tell her, maybe she’ll reduce her risk of Alzheimer’s
Doris
Even that that’s on the list, too; challenging yourself. So it’s not just sometimes somebody hears that, you know, their auntie or their uncle is has memory concerns. They buy them a puzzle. You can just, you know, teach them, teach them how to do a line dance. You can do so many different things. Play pickleball, you know
Kim
There you go.
Doris
study different things, as long as you’re challenging your brain as learn a new language, going back to school, taking a free class, online learning how to use your phone properly. You know, challenging your brain helps it to kind of stay engaged, stay active, and it’s protective as well.
Kim
My mom does a lot of volunteer work in our community. I imagine that’s going to help her as well, the social connection and the physical activity of it, right? All of that, I think, is helpful too. Yeah, Doris, let’s talk a little bit about treatment. I know we’ve been at a slow but steady pace when it comes to treatment for Alzheimer’s. I know we’re still trying to understand all the causes and the genetic links, but what have we seen advances in treatment? Are we seeing medicines that are helping people reduce their symptoms, live longer, live better?
Doris
So we are seeing an explosion of advances in care and treatment for people living with Alzheimer’s disease. So there have been medications that manage symptoms. So when my mom was sick, she was on Aricept. She took Namenda. There were certain medications based on what we were sharing with the provider that they could provide to her that will kind of decrease the symptoms. But what they made us very clear on is that she will that symptom will go away, but the disease is still there, and it is still progressing. And with any medication, as you know, there are side effects. So then we had to take that medication, but we also had to be aware of some side effects of those medications. So it’s kind of like this balancing act, so similar to the symptom pharmaceuticals that were available. There were also, there’s now new medications that actually slow the progression of the disease. So that’s different. That’s, that’s, it was huge that when it came out, was at 2023, I think, just two years ago, for there to be a medication that actually cleared what I talked about when we first started, cleared the amyloid in the brain. So that is, as I mentioned, kind of one of the defining factors of Alzheimer’s disease. The challenge with that medication is that it’s only available and only useful for patients who are in the early stages of Alzheimer’s disease or with mild cognitive impairment, and it’s only for people with Alzheimer’s disease. So Alzheimer’s disease, again, it’s one in the umbrella. So first people have to make sure that you have Alzheimer’s disease. You may be experiencing all the different cognitive symptoms I talked about, but it could be for a different kind of dementia. So if you don’t have what we call biomarkers, kind of like a 1c is a biomarker for diabetes, so they look for that biomarker, that amyloid, in the in the brain to say, you have Alzheimer’s disease. So therefore, this treatment will treat that, that specific marker.
Kim
The testing does allow. The testing does allow to get to that specific diagnosis of all, yes, what you’re saying? Okay.
Doris
Yes, but that’s what the testing is, expensive, it’s extensive. So everybody can’t just go out and say, I want to test and see if I have it. I want to go and see, because it’s, it’s not effective that way. It’s, it’s, right? We’re not there yet, right? But if you’re experiencing challenges, you can go and they can do initial screens, and then you can see if you want to get the additional. Screening to see if you’re eligible for for the new treatment. So there are two new treatments that are on the market. One of them is called Leqembi, and the other one is Kisunla. They basically do the same thing. They’re both injections, so they require a level of commitment. You have injection twice a month for for Leqembi, once a month for Kisunla, and it requires follow up. So with the medications, as I talked about, my mom was on there with side effects. So there are some potential side effects on taking these treatments. So those are conversations to have with that neurologist to make sure that you’re comfortable with that. There’s genetic screening that has to be done, because there are certain people who have Alzheimer’s disease that have additional genetic factors that might impact how these medications work or don’t work for them. So that’s also, you know, things to consider, but it’s an exciting time. The fact that there is even a treatment that does this that actually clears the amyloid in the brain is something that many wish for and asked for, but the fact that it’s actually available now is an amazing development
Kim
Good, good. It feels like we’re getting more and more attention, which will spur on getting more in the research
Doris
More attention, more people excited about it. But I also want to highlight that there are all those other risk factors we also look at, you know how to prevent it as well. So the Alzheimer’s Association looks at, of course, if you’re living with it, you want to have treatment, but we also want to help people live well, yes. So you know all those lifestyle factors I mentioned before, there’s research around that as well. In terms of, what kind of diet should you be having, how much exercise should you be getting? How much sleep should you be getting? All of those were looking at, you know, this study actually, right now, the results should be coming out, I think, in June, called the US Pointer study that’s looking at multiple lifestyle factors and its influence on cognitive.
Kim
Oh, interesting. You might have to come back Doris and talk to us. Oh, I would love to study that would be so interesting. What we sort of skimmed over at Doris, but what do we know about genetics and Alzheimer’s? Do we know that you can inherit it? Are there certain forms of it that are passed down in families?
Doris
So there are genetic factors, there are there is a specific gene that is found in and it’s, of course, if it’s a gene, it’s passed down through families. There are families that have the specific gene, and we know that it increases their risk. And this there’s, I think that the key piece is there’s nothing. There’s not a causal factor, like if A then B, if my mom had it, doesn’t mean I’m going to have it. I have this gene. That doesn’t mean I will develop it, but it increases my risk. Okay, that makes sense. So that means that, you know the level of the blocks are building, but that doesn’t mean that when I get to the top, that I will all automatically have Alzheimer’s disease, right?
Kim
So that’s part of knocking those blocks over. Don’t knock those blocks off, those blocks over, right? It’s like Jenga. Like pulling the, pulling the brick out of the Jenga, right? Yeah. Actually
Doris
We want to be aware of, like, the risk factors and who’s at increased risk. But increased risk is not definitive.
Kim
Interesting, that’s really good to know, helpful. And I think, look, that’s a very encouraging, you know, for folks, particularly who are, who are listening, who’ve lost a loved one, you know, for Alzheimer’s, it is not an inevitability, no, that you’re going to get this and there are, you know, we can’t change our genetics, but we can, or at least insert right now today.
Doris
I know we’re getting there
Kim
Right but, but we can, we can make those lifestyle choices that we know are having an influence in terms of reducing that risk. So I think that will be really encouraging for folks.
Doris
And I want to add Kim, one of the things that I hear often times is “My mother did all the right things, and she still developed it”. So we still learning, unfortunately, we’re still learning and trying to understand this devastating disease. But it should give people hope that there is ongoing research and to try to better understand it, everyone’s different. You know, twins are different! So to think that, you know you’re going to follow these 10 things and you’re going to come out scott free, there are people who develop cancer, who’ve never smoked, who’s never did this. So we there’s so much about the human body that we’re still trying to understand. But it’s, it’s wonderful that we have the opportunity to try to understand and build a better future for our loved ones.
Kim
And one thing I also say is that we are living longer now, which is great, and oftentimes we don’t know what our ancestors died from. Grandparents are great because maybe they died when they were in their 50s, or maybe, maybe what they had in their genetics didn’t have a chance to manifest, you know, to an old age. So that’s also why we’re learning, I think, so much at such an accelerated pace now, because we are living longer, which is exciting, we’re getting
Doris
What we ate is not what they ate, and how we move. That’s right, not how they move.
Kim
So that’s right. Sometimes for better, sometimes for worse. That’s right. Right, right? That’s right, Doris, we’re getting to the end of our time together, but I want to address this very important question. I’ve worked in healthcare for over 30 years now, and I’ve always had an interest in in caregivers, family, family caregivers. And I’ve worked in cancer for many years, but I think Alzheimer’s is one that has a significant and intense impact on loved ones, on caregivers, on those in the family. You I’m sure know this from your own personal experience. You know, we obviously work a lot with employers. We’re working a lot with folks who are in the workforce, who are caring for someone with Alzheimer’s in their family. So talk to me about the role of the caregiver, and tell me what does the Alzheimer’s Association have to offer to support caregivers and to work with employers to help them support their employees who are in that caregiving role?
Doris
Wonderful question. So again, I learned about this because I became a caregiver. That’s the only reason I even heard about and I’m in the world of public health, and I never heard about Alzheimer’s disease, dementia, anything like that. So one of the key pieces employers can do is raise awareness. You know, we come out into the community. We go to churches, we go to community centers, we go to libraries. We can come to your employ, place of employment, and host a lunch and learn and talk about the warning signs and talk about healthy brain health, and talk about, you know how to talk to your doctor. We have educators and volunteers that go into community and volunteer their time to go and to do these presentations. We have a 24/7 helpline, so that’s in available in a variety of languages, so people at all times, can just call and talk, talk about, I went to the doctor. They said this. I don’t know. We’re not going to give medical advice, but we can say, you know, here’s what we know, here’s what we’ve heard. Here are some other doctors in your area that you might want to talk to. We share information on day centers, on support groups. We talked about socialization. We have Memory Cafes at some of our locations that we, you know, host so people can get out the house and engage with other people living with Alzheimer’s disease. There’s an estimated 7 million people nationally that live with Alzheimer’s disease, and that means there’s 11 million plus caregivers. Oftentimes it’s a balancing act, because, you know, things happen unexpectedly. So you employers can, you know, provide that support in terms of bringing those resources in, but also provide that support in terms of allowing their loved one to take that time to care for their loved one, to take them to the doctor, to share their experience because they’re missing their doctor’s appointment, they’re using their sick time the caregiver to go to their loved ones doctor’s appointment, because their needs end up, you know, taking over
Kim
On the back burner, right?
Doris
That’s right. And then it ends up that our care partners have higher rates of chronic disease, they have higher rates of depression, and we that’s on the list of don’t, do’s, you know, that’s right, if you’re not here to care for your loved one, Who’s going to care for them. So we always say, you know, care for yourself. By caring for yourself, you’re caring for your loved one.
Kim
That’s right. That’s the best way you can be the good, good caregiver. I always remind people, remember, when you’re on the airplane, they tell you to put your mask, your mask on first, before you you put the mask on your loved one, because that way you can give the best support you know, to that person. And I think that’s that’s right. And I think sometimes folks feel like they’re being selfish by taking that time for themselves, but it’s not. It’s a, it’s a, it’s an act of kindness and love to their loved one, so that they can be a great caregiver, right?
Doris
That’s right, that’s right. Because I think one of the biggest challenges that we hear from our care partners is just the communication that their loved one is not responding well. They’re not doing what they’re telling them to do. They won’t bathe, they won’t eat, yes, agitated. And one of the challenges with people living with Alzheimer’s disease is that their communication is impaired. So I may be cold, I may be hungry, I may be tired, I may be bored, but I’m not going to say that. I’m going to act it out. And if my you know reserves is like this, I’m not going to respond in the best way, right? So we often talk to caregivers. We have a new program that’s actually evidence based for caregivers that they’re shown to improve their self efficacy, and saying, I can do this caregiving, and the focus is really behavior and communication. How do you communicate with your loved one? How do you manage that day-to-day? And then how do you take care of yourself? So you know, it’s it’s really a hard journey, and we want caregivers to know they’re not alone.
Kim
They’re not alone. That’s great. As we wrap up, Doris, how can folks find the Alzheimer’s Association. What is your website? Sure
Doris
It’s alz.org is our website. Great. We have a number of free resources to download. There’s actually an online community that people can join. And we have our 24/7 helpline. That’s 800-272-3900,
Kim
Say that number again. Grab a pen. Guys, listening in. So it’s alz.org is the website, and here’s the phone number. Doris?
Doris
800-272-3900
Kim
Great. So we want to encourage folks to check out those resources if you’d like to learn more about how the Alzheimer’s Association can help you in the workplace. You know, as employers, as HR and benefits leaders you know, give us a shout at NEBGH, and we can connect you to the right folks at Alzheimer’s. Doris, I want to thank you so much for being with us today. I feel like you and I could go on and on for for for quite a bit of time. So hopefully you will come back and we can learn more about the study that you referenced and continue to stay in touch as the research evolves and more treatments and resources become available to folks, I know that your perspective will resonate with our listeners and inspire many of them. So thank you again, Doris for joining us. This has been NEBGH voices. I’m Kim Thiboldeaux. Thanks for listening as always, I wish you wellness.
Outro
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