Teaser clip (00:06):
When we received the diagnosis of early onset Alzheimer's, we were in shock. So he was blessed to get into a clinical trial within months of an early diagnosis, which I feel is key. Well, these new, new drugs and, and treatments I think they will give me many more years with my daughter because there's, there's a slew of all new products that are coming out and I think it's, it's my, my hope is to stay stable.
Introduction (00:32):
Welcome to Brainstorm by UsAgainstAlzheimer's, a patient center, nonprofit organization. Your host, Meryl Comer is a co-founder, 24 year caregiver and Emmy award-winning journalist and the author of the New York Times Bestseller, slow Dancing with a Stranger.
Jon Summers (00:49):
Thank you for joining Brainstorm. I'm Jon Summers Chief Communications Officer for us against Alzheimer's. Sitting in for our friend Meryl today. Lifting the voices of Alzheimer's patients and caregivers is a big part of what we do at us against Alzheimer's as we work to prevent, detect, and treat the disease, as well as advocate for policies that help advance our cause. There's nothing more powerful than hearing from people who are directly affected by Alzheimer's. As part of a video series we launched in August, I had an opportunity to speak with a few patients and caregivers who shared their deeply personal experiences to help raise awareness of Alzheimer's, discuss the disproportionate impact of the disease on black and Latino people, and the hope they share for the future. One of those people was Martha Villa Negro Santiago, a caregiver to her mother. Listen now, as she recounts an early conversation with her mother and her concerns about the need to raise awareness of Alzheimer's among Latinos.
Martha Villanigro-Santiago (01:46):
She said, look, as my oldest daughter, I used to take care of you. Now I have to depend on you. When I first heard that, it broke my heart because I can't imagine what a mother and this one in particular must have gone, gone through her own mental struggle to have to say that to her daughter. Every time I tell someone that moment it comes back. I would talk to my mother and she would repeat herself, and this would continue about everything that we discussed in that conversation. And then I could see these other signs, the hoarding, the collection of unopened mail, the pills that she never took. Being a caregiver is overwhelming, and every day is overwhelming because you don't know what's going to happen next. Latinos do you know that we're more likely one and a half times more likely to get this awful disease?
Martha Villanigro-Santiago (03:03):
And I certainly can't speak for all Latinos, but I think there really is an overwhelming amount of big question mark. We don't see it first. We don't see it because we're not getting the information. We're not getting the information because it's not in our language. I think the most important, or one of the most important things is to be informed as the caregiver learn, learn about this. Ask the tough questions with the doctor. Be prepared to ask the things yet you don't know about, or that that physician is not being clear about. You need to really ask those tough questions, but you won't know unless I'm educating myself. It sort of all falls together.
Jon Summers (03:50):
It's so important for all of us, but especially caregivers to become knowledgeable about Alzheimer's. And if you have concerns about your brain health or that of a loved one, don't wait for the doctor to bring it up. As Martha said, ask the tough questions. That's particularly important for people experiencing cognitive decline because the new breakthrough drugs we've been hearing so much about lately are most effective for people in the early stages of the disease. That brings us to the story of Kevin and Kim Bonham. Kevin is living with Alzheimer's and his wife Kim, is his care partner. Kevin's in the early stages of the disease and says he's benefited from one of these medications. Here he and Kim talk about Kevin's treatment journey and their shared optimism about the future of the fight against Alzheimer's.
Kevin Bonham (04:37):
Oh, the first thing that affected was my my job for 40 years. So that was something that I didn't expect to happen, so I really enjoyed what I did.
Kim Bonham (04:45):
Kevin and I have been married for 18 years, and we have a daughter who is 14 and two awesome yellow labs. When we received the diagnosis of early onset Alzheimer's, we were in shock. Kevin's diagnosis of Alzheimer's has changed our life significantly. I've taken on a lot of extra roles like working full-time and our finances, and I had to take over and manage all of his medical appointments and raising our daughter. When we received the diagnosis of early onset Alzheimer's Kevin's doctor highly recommended getting into a clinical trial because at the time there were really no promising medications or drugs available. So he was blessed to get into a clinical trial within months of an early diagnosis, which I feel is key. The treatments have stabilized. Kevin significantly. His neurologist was impressed with how well he's doing. He credits the clinical trial and the treatments for him being stable and for doing as well as he is.
Kevin Bonham (05:48):
Well, these new, new drugs and, and treatments I think they will give me many more years with my daughter 'cause there's, there's a slew of all new products that are coming out and I think it's, it's, my, my hope is to stay stable and, and keep it where I'm right now.
Kim Bonham (06:06):
For the first time in history, there's hope for the Alzheimer's population. These treatments that are being offered now are stabilizing the progression of the disease. We've witnessed it firsthand with Kevin, and people are getting more time with their families, much more time.
Kevin Bonham (06:22):
Keep the faith that there's going to be drugs out there now and there's going to be other drugs coming out that will be better or just as good, but there's always help and always hope.
Jon Summers (06:38):
Their tremendous optimism, even in the face of one of the greatest challenges of their lives is so inspiring. Our third and final story is from Brian Van Buren. Brian discusses his diagnosis, stigma and why he's become such a prominent advocate.
Brian Van Buren (06:54):
I'm third generation in my family with Alzheimer's. My grandmothers both were diagnosed and died from Alzheimer's. My aunt and my mother both died about three years ago from Alzheimer's. When I was diagnosed with Alzheimer's, it wasn't a surprise, but it was still a punch in the gut. My doctor made me feel like it was a death sentence. He gave me no information, no referrals, basically, he didn't gimme any hope. Alzheimer's has changed my life in terms of my career. I was an international flight attendant and my identity was being a flight attendant. I was really proud of that, so that was taken away from me. Once you get a bump in the road, you have choices. You can move forward, you can make backward, you can stay. And I decided to move forward. I thought it was very important for me to become an advocate because I wasn't seeing any black people acknowledging Alzheimer's in the black community, it's very difficult to even look at mental health issues.
Brian Van Buren (07:58):
There's a sense of denial and shame involved. Many people will not even share the diagnosis with other people because of the judgment that they fear they may get and comorbidity issues like diabetes, high blood pressure. They believe that that helps enhance the progression of the disease. So it made me realize that I need to get this word out. So I felt it was important for me to give a face to this disease. As a black man, I call myself a person living well with Alzheimer's that they can see that life doesn't end at the diagnosis. I would tell people to live well right now. There's hope for them in the future, and they should really embrace whatever treatments come around that can assist them with their lives.
Jon Summers (08:49):
We're so grateful for Brian, Martha, Kevin, and Kim for sitting down with us and sharing their compelling stories, which you can watch on our website, UsAgainstAlzheimers.org. As I said earlier in this episode, there's nothing more powerful than hearing from people who are experiencing the impact of Alzheimer's firsthand, which is why we're inviting you to share your story with us. It's a great opportunity to have a meaningful impact as we work to end the sixth leading cause of death in America. If you'd like to join us, email us at stories at UsAgainstAlzheimers.org. And if you'd like to hear about the latest developments and prevention early detection and treatment, join us for our virtual National Alzheimer's Summit on October 17th and 18th. For more information, visit Alzsummit.org. This has been BrainStorm by UsAgainstAlzheimer's. I'm Jon Summers in for Meryl Comer. Thanks so much for joining us.
Closing (09:45):
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