S1: Welcome in San Diego. It's Jade Hindman today. We're talking about an underdiagnosed brain disorder and efforts to raise awareness in the Latino community. This is KPBS Midday Edition. Connecting our communities through conversation. Alzheimer's disease and the related dementia are on the rise , and the Latino and Hispanic community are particularly at risk. Latino Americans are estimated to be 1.5 times more likely to develop Alzheimer's disease than white Americans. And yet stigma and denial can make treating the disease more difficult. Joining me to discuss the disconnect are Eugenia Welch , president and CEO at Alzheimer's San Diego. Welcome , Eugenia.
S2: Thank you for having me.
S1: Glad you're here. Also , Nellie Hernandez , dementia educator at Alzheimer San Diego. Welcome to you , Nelly.
S3: Good morning , and thank you for having me as well.
S1: Glad to have you both here.
S2: But we also know that those numbers are very low because many people never get an accurate diagnosis. So we suspect that number is actually more like double.
S1: And Nellie , the California Department of Public Health estimates a near 200% increase in the number of Latinos over the age of 65 with dementia between the time period of 2019 and 2040 , in San Diego.
S3: There's still this belief that memory loss , and specifically just any type of dementia is a normal part of aging. And , well , when that happens , what we do know is that it's just harder to acknowledge the difference and what needs to be done to understand it. And then with that being said , we always got to keep in mind , too , that the Latino population really doesn't have enough conversations about it to collect the answers needed for us to move forward and say , hey , is there really a difference ? And what are those differences ? And if there are differences , how do we go about getting help for it ? They just still really think it's a normal part of aging. And instead of getting help , we kind of look away from it and sweep it under the rug as just another common thing that's happening. Mhm.
S4: Mhm.
S1: And individuals really tend to be diagnosed at later stages of Alzheimer's disease. Why is that and what consequences does that have for their treatment. Correct.
S3: Correct. I would say that the primary thing that we have to keep in mind is that there's just still so much stigma around it , not only in the Latino community , but unfortunately in other communities as well. But with that being said , we have to keep in mind because there's so much stigma , we definitely don't talk about it openly. And when we do talk about it openly again. Back to the stigma. We don't ask the correct questions because we just don't know. And we tend to not seek the medical attention or the medical help that we need to try to find out more about it. And we also gotta be realistic and remember that even if that's the case , sometimes folks just don't have access to the support that they need to learn more about it.
S1:
S2: But we also learned recently , um , at a conference that only 15% of older adults talk to their doctors about their brain health. It really goes back to what Nelly was saying about the stigma associated with Alzheimer's , dementia , anything associated with mental health. People just don't want to talk about it. And part of that is the fear of being treated differently. We hear all the time from people that we're working with that once they tell people in their circle that they have some sort of a memory issue. People stop , you know , talking to them in the same way they maybe , you know , defer to that person's care partner or friend with questions. They're not involved in decision making. And it's it's just the fear of being treated differently as well.
S1: Well , Nelly , I want to dig more into the stigma you mentioned around Alzheimer's in the Latino community. Earlier this year , we spoke to Patricia Hernandez , who lives in Claremont. This is what she had to say about her father's experience with dementia.
S2: I think that.
S5: He may may have been reluctant to tell me because he was embarrassed. And later on , I did find some things that he wrote in a journal , and he wrote that he just wanted his memory back and he didn't feel smart.
S1: And so does Patricia's experience reflect what you've seen ? I know we touched on that.
S3: Very much so. And it sounds as if , you know , they were in a situation where the father could actually recognize that symptoms were causing changes in his life. But with that , you know , the person that he was wasn't allowing him to move forward and speak on. Hey , these are the changes I'm noticing and this is how I'm feeling about it. And it can be even more challenging , right ? If luckily , he did have Patricia in his life that could support him. But we know that even with him having her around , there's so many others that are going through the changes because we know that those changes that come with dementia could come years before somebody may even recognize that they actually are happening. And that's why it's so important that at any point that we can all get , you know , a memory screening to start with , at least to have a point of reference , to recognize those changes that might be happening and to help not only ourselves if we're going through the changes , but to help the family be able to try to move toward understanding how to help us as well , and just overall how to really begin to to plan for those changes and how to begin to plan , how to respond best to those changes that we see as symptoms. But in real life , those are the behaviors that sometimes seem unpleasant , the ones we're afraid of , the ones we don't want to talk about. We just have to find a way to be able to acknowledge them and openly start to discuss them.
S1: This is KPBS Midday Edition. We're back after the break. Welcome back to KPBS midday edition. I'm Jade Hindman. We continue our conversation on raising awareness about Alzheimer's disease in the Latino community with Eugenia Welch and Nelly Hernandez from Alzheimer's San Diego. Well , I understand you both have personal experiences navigating this with loved ones and family members , if you're comfortable. I'm wondering if you could share your stories. Absolutely.
S2: Absolutely. I had two beloved aunts who passed away from Alzheimer's disease , and it's it's very difficult. My background , I've , you know , worked with seniors since I was 16 and understanding the disease progression and understanding what was going to happen really doesn't change how it affects you emotionally. When someone who's been in your life your entire life doesn't really remember who you are anymore. Um , I can't explain to someone who's never been through it what that feels like , but , um , it's it's very difficult. Very difficult.
S1: Yeah , well , Nelly , I know it's an experience you're familiar with.
S3: Yeah , it is an unfortunate experience I'm familiar with. I , too , like Eugenia , had a Tia that shared symptoms with my mom years before anything really came about. As far as her receiving medical attention with it , and with my experience , I often like to share that that's something to keep in mind , is to really trust some symptoms that a family member might share with you , even if you're not near that family member. We often don't consider ourself a caregiver , a care partner if somebody is not next to us. But that's not true. We're long distance caregivers and care partners for other people that might be in our life. And that was the case with this Thea. She recognized symptoms , um , that she would share with my mom. Like , occasionally , I feel like I don't know where I'm at , or occasionally I am no longer really able to understand what somebody is telling me. And , you know , as the years went by , this was all new to me and all new to us , too. You know , we didn't know the risk factors that people that have blood pressure issues or people that are dealing with other cardiovascular problems. So all these risk factors we did and know that contributed contributed to the dementia that she was actually going through. And so much planning could have been done if we really understood it. Way back when , she started having symptoms. And , you know , I really get when I go out to teach in the community , when I often say , you know , your person may pass away because of the dementia , but they may actually pass away from something else , which was the case with my wife Thea , but B having lived with dementia as well. So there's a lot of scary factors in there , but it's all so important to talk about. Yeah.
S1: Yeah. And detection is so important. Eugenia , what other signs or changes should we be looking out for ? Sure.
S2: People always think they've lost their keys. Oh my goodness , you know. Am I losing my memory ? No. It's when you have your keys in your hand and you don't know what they do. It's when sequencing doesn't make sense anymore , you know. Do I put my shoes on first or my socks ? How does that happen ? And also a really good early sign is if someone has always been fastidious about , you know , paying their bills and taking care of things like that , and then payments start to get missed or forgotten. Um , those are all good signs that maybe somebody should , um , you know , take a look at what's going on , go into your physician and talk to them about it. One of the things that we offer here at Alzheimer's San Diego is free memory screenings , and it can be threatening to go into your physician and talk about your memory. People are worried about something being written in their chart. So when we do a memory screening here , we give the results to the person. It's not shared with their physician , but it it's given to that person as a tool that they can then take to their physician to start the conversation. And that can be really helpful. Um , I think often concerns are brushed off because someone with Alzheimer's can have good days and bad days. And so when there's a couple really good days , people tend to think , oh , well , you know , that was just a blip. It's it's not a real ongoing issue , but it's it is important to get that baseline.
S1: Eugenia , while there's no cure for dementia , there are treatments.
S2: In the last couple of years , we've had more treatments be approved than , you know , we hadn't had something in almost or 20 years prior to that. But since one has been pulled back , there's concern that maybe the benefit isn't as positive as it could be. But the good news is , as has been explained to us by a trusted physician that we work with. These are steps. These are dominoes. And , you know , nothing's perfect yet , but it's it's getting us closer. And the dominoes are falling quicker than they have been in years past. So we're closer to treatment than we've ever been. But again , that's why early detection is so important , because the treatments that we've all heard so much about in the news recently are only beneficial in the very , very early stages of dementia. And unfortunately , most people , when they're going into their doctor asking about it , they're already beyond the point where those drugs will be effective for them. So getting that early diagnosis also gives you access to more treatments and again , gives you the opportunity to be an active participant in planning for your own care. Mhm.
S4: Mhm.
S1: What are some ways to overcome some of that stigma and hesitancy we discussed earlier.
S2: But I think the first , most important step is making sure that you understand what's going on before you try to approach it with someone else. So getting some basic disease knowledge for yourself is always very important , and our clinical care coaches can help with that as well. And often people say they don't know where to start or they don't even really know , you know what exactly they need help with. But if they call in and talk to one of our staff and just tell their story , our staff can help guide them through what their next step should be , how to have those conversations. We actually sometimes help facilitate those conversations , either via zoom or an in-person family meeting and take the burden off of the daughter or spouse who's concerned about their person. And it put it on our staff to raise the issue.
S1: Nellie , you're running a few workshops to really help educate the community about this important issue.
S3: The hours that are held in Spanish at the Bonita Library. You can catch me in San Isidro , the old Nestor library. These are only a few places that I go to where I hold sessions in Spanish. But rest assured , you can connect with us at any time you want , online or via telephone and speak to somebody about questions , how to come meet with me , or even set up a private time to meet with one of our clinical care coaches there in the office or via telephone , whatever might be easiest for you , and just have the opportunity to ask what might be helpful to your situation , your journey , because it may totally look different from someone else's.
S4: All right.
S1: I've been speaking with Eugene Welch , president and CEO at Alzheimer San Diego. Eugene , thank you so much.
S2: Thank you.
S1: Also , Nellie Hernandez , dementia educator at Alzheimer San Diego. Thank you Nellie.
S3: Thank you so much for having us again.
S1: That's our show for today. I'm your host , Jade Hindman. Thanks for tuning in to Midday Edition. Be sure to have a great day on purpose. Everyone.
