The journalist discusses her campaign to raise awareness for Alzheimer’s disease.
Journalist Maria Shriver
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Tavis: So pleased to welcome Maria Shriver to this program. For more than a decade now, she’s been on a mission to wipe out Alzheimer’s Disease which affects people from all walks of life, but disproportionately impacts women. Maria, an honor to have you on the program.
Maria Shriver: Thank you. Happy to be here.
Tavis: Tell me about the genesis of your work on this issue.
Shriver: Well, my father, Sargent Shriver, was diagnosed with Alzheimer’s in 2003 and he went, as I have said many times, the smartest human being I’d ever met, the most finally tuned brain of any person I’d ever seen. Everybody who knew him would agree with that.
So to watch that up close, to watch someone lose their mind, to lose their ability to know what a fork or a spoon or even who you are, it’s really an incredible experience to go through.
So I started as any journalist would, asking questions, trying to understand what was happening in our family, but also in my father’s mind and his brain and to try to understand it myself and then try to do something about it.
Tavis: There are a couple of questions that come to mind. One, Maria, is when you discover the answers to the questions that you were asking when you get the data, does the data provide any sort of comfort at all?
Shriver: Well, I didn’t get the data. I had to go out and find the data myself, which was really an interesting experience. That’s how I came to the conclusion or brought out the information that this discriminates against women, that women are two-thirds of all the caregivers in this country.
And as I went around the country asking doctors why women, everybody’d be like, “I don’t know, I don’t know” and that has spurred me to try to fund research into women’s brains to try to get that answer, which I think will help men and women and help the country.
So I think any time you take an issue and try to find answers and get involved, it helps you feel less powerless in a situation. I have found that, with everything, the more empowered you can become, the less desperate or despair you feel.
Tavis: The other question I wanted to ask is what’s it like? How do you process your father not being able to recognize a knife or a spoon, as you said earlier? That’s one thing and that’s horrible, I can imagine, emotionally debilitating to deal with. But when they don’t recognize you…
Shriver: Yeah. That’s a mindblower, yeah. So when your father or your mother sits across from you or your spouse and says, “Who are you?”, I say, “I’m your daughter, daddy. I’m Maria. I’m your daughter”, “Oh. Who are you?” I say, “I’m your daughter. You’re my father.” So that’s, you know, kind of an unbelievable experience. What I learned about having a parent with Alzheimer’s was to be much more present in the moment.
I watched caregivers and others in this space. I learned what love is in a whole new way. And I learned to be patient and accepting and to go with the flow through this. But I also became a warrior in this space because I want people to understand that this is a disease that’s coming to every door in this country and that we don’t have a government that’s really focused on this.
It’s going to wipe out our healthcare system. We need to fund it more on a federal level and that’s why I was really excited to see like Bill Gates just recently say that he also thinks this is a primary issue in our country and he wants to put money in it. I’m really hoping that people from all walks of life will get involved in this disease.
Tavis: It is arresting, I suspect, for the persons who are watching this at home. They heard the same thing I just heard. It’s arresting to hear you say that it’s coming to every door. What do you mean by that?
Shriver: It is. It’s coming to every family, every economic group, every — you know, people of color twice as likely. Women, as I said, twice as likely. And people are really unaware of what Alzheimer’s is and isn’t. We just did this big poll and the crisis of awareness really was stunning to me.
Because I’ve been out there talking about it as have others and somehow it’s not landing. Somehow people are like, “Wow! Women are more vulnerable? Wow, I didn’t realize that the government wasn’t going to pay for this if I get a mother or father who will get this.”
We have 10,000 people in this country turning 65 every day, right now, the baby boomer generation. You know, the vast majority of them are going to end up with Alzheimer’s. We don’t spend as much money trying to find a cure for Alzheimer’s as we do trying to find a cure for cancer or AIDS. I’m not saying those diseases aren’t important, but this one caregiving 24/7.
There is no survivor when it comes to Alzheimer’s. There is no remission. There is no survivors in these walks coming back and telling a story of, “Wow. I was a part of this experimental drug run and I’m all better now.” We don’t have that yet and we need to find something that will enable people to continue even if they have it like you do when you have AIDS.
Tavis: So I take your point about not comparing illnesses, not comparing diseases…
Shriver: Right. People don’t want you to take money away from one or the other.
Tavis: Sure. But there’s enough money to go around.
Shriver: That’s what I say.
Tavis: We are the richest country in the history of the world, so there’s enough money to go around. So the question is why not Alzheimer’s?
Shriver: Well, that’s the question I’ve been saying and I just testified in the Congress. I think I’m excited because this is a bipartisan or a nonpartisan issue, and there is now growing interest in this disease. More and more people experiencing it firsthand.
When I went and testified, Democrats and Republicans on the committee said, “You know what? You’re right. We shouldn’t let this president cut NIH funding for this. We’re going to actually increase it.” We need to increase it more. I think more and more people coming forward, men, women, from all walks of life, and say, “This is a disease that we need to get a handle on. This is a global crisis.”
There’s now huge interest in the brain. People want to understand it. We want to learn about it. We can see it now through technology whereas, five years ago, we couldn’t see it. We can understand how it works.
So this is an explosive, exciting new field and I think understanding Alzheimer’s, how it starts, when it starts — it’s 20 years in your brain, Tavis. People don’t realize that. They think it’s something you start to get at 70 or 80. That’s wrong. That’s why we’re trying to focus on women who are in their 40s and 50s who might be perimenopausal, menopausal. That’s when it begins.
Tavis: You referenced the fact that it hits women disproportionately a few times in this conversation. Why women? What do we know about why and still don’t know why.
Shriver: We don’t know. I mean, I have my own theories. It’s maybe tied to being perimenopausal, maybe it’s tied to the X chromosome, maybe it’s tied to childbearing years and the amount of time you spend after childbearing years. There’s a lot of questions out there and very little answers.
There are people looking at inflammation. They’re looking at, you know, type three diabetes, they’re looking at women of color, they’re looking at Latino women. So there’s a new interest in this space which is exciting, but we don’t yet have the answers that I would like us to have.
Tavis: Any information about whether or not the disease is hereditary?
Shriver: Well, yes, there is a small portion of that, but people think — which is one of the things that came out in this poll — they think, “Oh, I don’t have to worry about it because it doesn’t run in my family.” That’s wrong.
So your genes are not your destiny. So it means if you have the APL4 gene, it doesn’t mean you’re going to get it. It means you’re more vulnerable. But if you don’t have it, it doesn’t mean you’re going to get it.
Tavis: Conversely, since your father had it, are you afraid that you might…
Shriver: Absolutely. You should be afraid. We should all be afraid. And I think this is, for me having worked so long in the women’s empowerment space, this is kind of all my work coming together because this is an economic issue, it’s a professional issue, it’s a personal issue, it’s a partner issue.
This is an issue that corporate America needs to get involved with because women are dropping out to care for loved ones. They drop out of the system, they lose income. So this is a huge financial issue for men and women.
It’s a huge kind of family issue because families want their loved ones to take care of them and yet they don’t have that conversation. They don’t put aside money for a loved one to take care of them.
They don’t even have that conversation, so I’m hoping over the holidays perhaps people will sit down with their parents and ask them, “Do you want me, Mom and Dad, to take care of you if you were to get it? Do you have any plans? Have you set aside any money? Do you have a vision for how you want to get older?” These are conversations that every family should be having.
Tavis: So I hear you and I saw the data in preparing for our conversation that most persons, if asked, want to be taken care of by a family member, as you just intimated. Are we prepared to do that?
Shriver: No, because we haven’t had that conversation. And it shows that millennials are the most anxious about it and they actually know the least about what the government takes care of or doesn’t take care of. So I think it’s almost like a civics lesson or a healthcare lesson to know what is provided, what isn’t provided.
You know, we don’t have an educated caregiving force. People don’t know the difference between Alzheimer’s and Parkinson’s or a stroke, how you need to care for somebody. So these are conversations that I think bring us closer together because you are able to talk to someone about their most basic fears and most basic needs.
Tavis: I’m holding in my hand a coloring book. I used to love coloring books. I still love coloring books [laugh]. But this one’s called “Color Your Mind”. Tell me about this book.
Shriver: It’s a coloring book that I did for people with Alzheimer’s and those who love them, their caregivers. And it’s coloring because coloring is good for the mind.
But it’s chock full of information for caregivers about what people who have Alzheimer’s or other cognitive impairment dementias need, what can improve their life, the role of music, the role of exercise, the role of nutrition. These are all things that we’re learning now has an impact on the brain.
What you eat has an impact on the brain. Whether you exercise or not has an impact on the brain. Music has an impact on the brain. Meditation has an impact on the brain. So I’ve tried to put a lot of information in here, but it was also a tool.
Because when my dad was sick, you know, we ended up playing with blocks that were meant for two and three-year-olds. We didn’t have a coloring book. I was always struggling to find something that we could do together. So the children’s books that I’ve written, even this, is all with the notion and the hope that it’s something you can do with someone you love.
Tavis: Let me close by asking whether or not, given the space that we’re in, given the hearings that you just participated in and what you’re doing on Capitol Hill, are you hopeful?
Shriver: Yes, absolutely.
Tavis: Tell me why.
Shriver: I’ve never been more hopeful because, as I said, there are more people that are interested in this. We’ve learned a lot more about this disease. We can see the brain now in ways that we couldn’t see it. And I think that people like Bill Gates are stepping up.
They’re seeing this disease firsthand in their own families. They see how devastating it is and they see how blessed they are if they have money to be able to take care of a loved one and how millions and millions of people can’t. This is something that doesn’t, you know, discriminate against anybody.
It just comes to everybody and we as a country, the greatest country on earth, as you said, the richest country, the most innovative country, the most inspiring country, we can wipe this out. We have done it before and we have the best scientists and researchers in the world. I think, if we come together, we can really figure out what this is and how to stop it.
Tavis: Well, thank you for leading us in that conversation, Maria.
Shriver: Thank you for having me. A pleasure.
Tavis: It’s good to have you on. Up next, a conversation with and performance from jazz singer, Jazzmeia Horn. Stay with us.
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