(bright music) (upbeat music) - Thanks for joining us.

I'm Fred Martino.

The World Health Organization projects the population of those 60 years and older will double by 2050, reaching approximately 2.1 billion people globally.

And that means more people will be seeking care for dementia.

"In Focus" today, the Mama Joe Project.

It's a multimedia and outreach initiative focused on aging and care for those with Alzheimer's disease and other dementia.

Core to the project is the documentary, "My Mama Joe Hope & Help" airing on WSIU and PBS stations nationwide.

The film's central character is a community champion who lived with dementia.

Here's a preview.

(upbeat music) - Who is Mama Joe to me?

She was my beacon.

She was fearless.

She allowed me to be human and make mistakes, but she also taught me how to keep moving forward and not give up.

- [Narrator] JoeAnna Caldwell's childhood was riddled with abuse and poverty.

As an adult, she would transform this pain into a passion for helping others, which garnered her awards from the mayor to the White House.

(soft music) - She is a voice to the voiceless.

She is a lover of all, she knows no stranger.

She is hilarious.

But to me, Mama Joe, she's my mother.

- Thank you for loving me.

Thank you for making this possible.

This is a day I'll never forget.

(dramatic music) - She calls me back into her room and tells me to give this girl a check.

So basically within five minutes, she had forgotten she had written a check and already given it to me.

So that's when.

There was no guessing any longer.

It was very clear.

- Alzheimer's is one of the most costly diseases that we have in the U.S. And unfortunately there is not an effective cure.

- Our population here in the United States and around the world is growing older, and that means we are gonna have more people who are dealing with Alzheimer's and dementia in the years ahead.

- This project can bring more awareness around this condition, Alzheimer's, and also just bringing more attention to the inequities that occur in healthcare to make sure that, you know, everybody is getting equal opportunities to age healthy.

(upbeat music) - And I am very pleased to welcome now into WSIU Studios, Herb Caldwell.

He is the producer and director of "My Mama Joe Hope & Help."

Herb, it is great to have you with us.

- Thank you for having me, Fred.

It's a pleasure to be here.

- Well, it's such an important project.

As I mentioned earlier, not just a film, the Mama Joe Project to educate people about this issue.

And this is personal, I know for you, Mama Joe was your mom.

Tell me about her and your decision to share this story.

- Yeah, so it's hard sometimes.

It's almost like I have to look outside to really describe who my mother, you know, was, but just a wonderful person who really lived their life about helping others.

We don't come from any particular distinction or what have you.

Born in Alton, Illinois, spent a great deal of our time in Jacksonville, Illinois, but just found a way to help make others better, right?

Whether it was through feeding programs, education programs, job skills training.

My mother just believed in doing that.

But to understand that, I think you have to understand my family dynamics, right?

So my mother bore four children, of which I was the youngest and the only boy.

But through the process of adoption, I spent most of my time growing up as the middle child.

Four sisters all older, four brothers all younger, and there was always a cousin, a neighbor, a stranger.

So she had this universal mothering spirit.

That's how she got the nickname Mama Joe, right?

And so using this film, as you said, being personally impacted to kind of help other families to know, be aware about dementia, Alzheimer's, caregiving, so they can be informed and not feel alone.

That's the a key piece to not feel alone.

- Yeah.

Well, you've been a producer for many years.

Tell me how it was different for you sharing such a personal story.

- Yeah, right.

So usually someone contracts you, right?

And so I'm working with the vision of whatever client I'm working, you know, with on this.

But this was different because you have to literally be objective with your lens.

I tell folks that I felt nearly a divine tap.

I feel this is missional.

And we wanted to use our family story as illustration, if you would.

It's like reading a book, but having pictures on it, giving it a face, a personal connection with what can be a tough topic to talk about.

- [Fred] Yeah.

- Dementia, caregiving, you know, for a loved one.

So the piece was how can this do what is the ethos of my mother, which is help others.

So crafting that story in a way, bringing in some national level experts.

And so, again, so it could help not just my family, but any individual, any family who's watching.

- Very important.

And I know through the project you visited the Dale and Deborah Smith Center for Alzheimer's Research and Treatment at SIU Medicine in Springfield.

Let's take a look.

- [Herb] With all that I've learned about Alzheimer's over the course of filming, like family history increases risk, and that blacks may show signs at younger ages, I knew I needed to be proactive.

So the day after my 50th birthday, I strolled into the Smith Center for Alzheimer's Research and Treatment at Southern Illinois University's Medical School.

- [Cindy] Hi, are you Mr. Caldwell?

- [Herb] I am, I am.

- [Cindy] I'm Cindy.

- [Herb] Recently, I've had some minor concerns, like at times, certain words that I've been staples of my vocabulary escape me during conversation.

It's no secret and the data bears it out that men are less likely to see their primary care providers, even more so for black men, even when they have the insurance and means to do so.

I did not want to be here.

I was scared and I did not want to do this, but I had to.

Dementia is real and I wanted to know for myself as well demystify the process for others.

- [Cindy] So what's making you uncomfortable?

- Oh, just because it's making you face the possibility that there could be an issue, right?

So what did it mean if I couldn't write 11 after 10?

What did it mean if I couldn't remember wagon, paper, donut?

And then what comes next?

So those kind of questions are kind of stirring.

- [Cindy] Well, let me reassure you, you passed all of that, okay?

So this is a screening exam.

We're looking for red flags in your cognitive response.

- [Herb] Yes, I was happy to receive this good news, but you can see I'm fighting back emotions and tears.

My mind is wandering and I'm wondering what if Mama Joe could have been tested at age 50?

(soft music) - The earlier you come in, the better it is for you because if we can establish a diagnosis, this opens up other opportunities for you.

- We want to catch people where they haven't lost as much brain volume or kind of functional capacity of the brain.

And where interventions are more likely to be effective.

And also to prepare the individual and their family in terms of what to expect, like what's gonna come down the road so they can start to plan and kind of preserve quality of life.

And for both the patient and their family.

- [Herb] There is hope and help in terms of research advances for Alzheimer's, including disease modifying therapies approved by the FDA.

- Secukinumab is an antibody that binds to clumps of amyloid beta protein.

And that's the protein that forms the amyloid plaques in the brain.

Secukinumab binds to clumps of the protein that can either be floating around or be in plaques and clears them out of the brain.

So by clearing these clumps of amyloid protein and plaques, we're slowing the progression of Alzheimer's disease.

- Over 20 or around 20 years since we had a new treatment out for Alzheimer's disease.

So this is a very important first step.

- [Herb] We're not endorsing Secukinumab or any treatment or therapy.

Like most drugs, there can be side effects, like in this case, brain swelling and bleeding.

You should always discuss with your provider the risk, benefit and cost of any therapy or treatment.

- Herb, give us an understanding of what you learned by getting a chance to visit the Dale and Deborah Smith Center for Alzheimer's Research and Treatment.

- Well, it was amazing to be there with Dr. Erin Hascup, Dr. Cindy Womack, just wonderful staff people there.

And I didn't want to do it, right?

Who wants to go get tested?

I mean, I barely wanna do my annual visits there, but I meant it when I said that I needed to do it because obviously my family had been impacted with Alzheimer's.

And so I wanted to get tested and know for myself.

And the other thing is, as an educator, as someone who's moving in this space of even healthcare now, I wanted to demystify the process.

I wanted people to be able to see that this is necessary, right?

And you're not gonna keel over because of it, right?

No one did a spinal tap, you know, but it was an important test.

So now I'm moving forward with information.

And I gotta tell you, as we've been kind of going around now and showing the film in other places and doing outreach events, I've had people come up to me and say, "Hey Herb, I went and got a dementia test because I saw what happened there on the screen," which is exactly what we want.

We want people to be more informed and take an action to improve their own health.

So it was a lot being there.

And now I have the firsthand knowledge and experience that I can use to share with others.

I survived it.

- Yeah, yeah.

So from your work, researching the medical aspect of dementia, which we're going to learn even more about in this half hour, tell me in your view, the need for more research and treatment.

- Absolutely.

There is no known cure for Alzheimer's disease, you know, or dementia.

And there's, you know, Alzheimer's is a type of dementia, but dementia really is a set of conditions that can be broadly explained by a lot.

So there's no cure for that, but it's not a death sentence, there's just ways you can live with it.

And so there is a lot of testing that's needed.

And when you're talking about testing, you know, further, there has to be trials, right?

And you need people who to participate in these pieces.

People who may have dementia as well as those who don't, so that the researchers can know what the differences are, what type of treatments, you know, work.

So one of the things we do talk about is the need for it, how to become educated, how to connect with entities like the Smith Center, who was really, they cover everything outside of Chicago for the state of Illinois, right?

So they're very important to the ecosystem here within our own locale, so.

- Yeah, and as we mentioned at the beginning of the program, the need, it's already great, but it's going to get greater and greater because we have an aging population.

And so more and more people are going to need help - 100%.

And you're not going to get that help until you step forward and take a step on your own.

So that's what we want to encourage and empower people to know that they should be doing.

- One of the things I love about your work in this documentary is the fact that it is a personal story and a story of your mom, but it also shares a lot of information, medical information about dementia, the science of the issue.

And so we're going to get a taste of that during this show.

I wanna get some basics on dementia now from the documentary, "My Mama Joe Hope & Help."

- Think about dementia as an umbrella term, a big category.

Alzheimer's disease we think might be the most common type of dementia.

One of the hallmarks is changes in a person's memory or thinking.

They may have a more difficult time remembering the names of people they've just met, remembering why they walked into a room or what they were looking for in a certain spot.

They may have more difficulty finding their way in familiar places, may forget the names of certain objects, common everyday objects, or how to do certain things that they were able to do without effort before.

And those problems get worse over time.

- [Herb] So it was good they took action and got the diagnosis when they did.

For some families, this isn't the case.

- Little less than half of people who say my memory's gotten worse in the last year, have actually spoken with their healthcare provider about that.

So I think we really have a big communication issue here.

And that has a lot to do with stigma.

We rely a lot on our brains.

Our brains tell us where our cars are parked.

Our brains are our personality, our brains are our identities.

And when we start to have some of those changes in our brains, we become concerned.

- Hearing that you have Alzheimer's disease can be difficult news to take in, to let it register, to understand.

And it's important for doctors to be very clear, very concrete about what they think is going on.

To use the word dementia, to use the word Alzheimer's disease and to explain what that means for people.

- You know, there wasn't a whole lot of direction, you know, just basically maybe gave her two meds that we were told don't really do anything, but could help keep the symptoms maybe, you know, from getting worse.

And that was pretty much it.

We were pretty much left off on our own to visit the neurologist or whoever once a year is what it was.

- [Herb] Age is a leading risk factor for Alzheimer's.

Certain groups are at greater risk.

- Black people are approximately two to three times more likely to develop Alzheimer's disease than their white counterparts.

And this is based on data from the United States.

Being female also increases your risk for Alzheimer's disease.

So those two things, if you're a black female, they do compound together, which makes your risk even greater.

- [Herb] As a woman of color in her sixties, turns out Mama Joe was a triple threat for risk.

- Health disparities are differences in how people experience health and health outcomes based on different privilege.

They are preventable.

They're something that we can change because health disparity is not biological, it's not predetermined.

It is a social problem.

- Herb, to the last point in that clip, and we want to emphasize this, your film also seeks to raise awareness about health disparities.

We know that these exist when it comes to Alzheimer's, but many other issues too.

- Oh, 100%.

And I think this is where the social science part of me comes in too.

And so data is clear about certain things, Fred, and one of them is that women are disparately impacted by Alzheimer's and dementia.

They make up two thirds of those diagnosed.

Similarly, Blacks, African Americans are twice as likely to have Alzheimer's and dementia.

Latinos, Hispanics, 1.5 times more likely.

That's irrefutable.

The data's clear no matter what sources you check on that.

And it's been for a while.

So the question has to be, why?

Particularly if it's not genetic.

So then we tend to be talking about social determinants of health, right?

Those non-bio, those non-medical issues that are impacting us.

So do they have insurance?

Do they have access to quality care?

Do they have access to quality diet and the other pieces that impact us in daily living, but that will also impact and affect our health.

- And you mentioned it earlier also, part of that preventative care sometimes is testing.

And you had a chance in this project to be tested yourself because of the family history with Alzheimer's.

- Right, and one of the questions we actually asked, and listen, when you're doing a documentary film like this, there's no script, right?

There's no acting.

And so even in checking in, it occurred to me, you know, as a professional working in higher ed and owning my own business, I have certain levels of insurance, but what's the cost for testing for someone who may not?

So it was nice to know that at the SIU Smith Center where we were, they adjust for that.

And they have programs that can assist with simple things, you know, like cost.

But that was a choice I could make.

Whether I have the question wasn't if my insurance would cover it.

- [Fred] Yeah.

- What about for those who have those types of questions?

So these are some of the things that we deal with when we're talking about this, Fred.

- And we know that that does affect health decisions for some people, if they feel like they're gonna get a big bill, they may not get a test or preventative care.

And that brings us to really the ultimate question that even goes beyond the health disparities, goes beyond any one disease, ensuring everyone has access to quality healthcare.

You've done the research by putting this documentary together, and I know you must have thought about this a lot, making this documentary.

What do you think the answer is?

(Herb sighs and chuckles) - So one of the things that I've talked about is the piece about humanity, right?

And so for someone who grew up in a tough neighborhood and a tough economic position, that shouldn't deem that I should have less access when it comes to health and care.

It's why we do this outreach, Fred.

This is why we offer it at no cost, so that people can be informed and be aware.

Thankfully in the communities that we're going to, there are sources that are out there, there are organizations out there that are helping to assist to make sure there is equity or fairness when it comes to healthcare.

One of our jobs with the project is to just to raise that information.

- [Fred] Yeah.

- To highlight those resources and our partners.

Because is one of the pieces where there's caregiving, it may be Alzheimer's, it may not.

- [Fred] Yeah.

- But it's going to impact us.

I love something the former First lady, Rosalynn Carter said when it comes to caregiving, right?

"There's only four types of people in the world, right?

Either you've been a caregiver, you are a caregiver, or you're going to be a caregiver, or you're gonna need someone to caregiver for you, right?"

And the same thing applies to wanting good, quality healthcare.

- Yeah.

And of course the Affordable Care Act has made a difference.

But as you know, there's much more work to be done.

And for many people, that support is crucial.

It's life or death.

In addition to healthcare, as you point out, there is another growing issue in the country, lack of support for caregiving.

And we have another clip on that from the documentary, "My Mama Joe Hope & Help."

- And you might say, "What does a caregiver do?"

That could be anything from picking up medication and groceries through really complicated clinical tasks like changing feeding tubes or bandages, doing stretches and physical therapy with the person that they're caring for.

- [Herb] A stark reality of caregiving is that you have to expect the unexpected.

And this can be a heavy load to family caregivers.

- You feel drained because for me, personally, every time I want to go to my mom, I want to make sure I presented myself, you know, happy.

Like she was not a burden.

And so, you know, playing those dual roles, even though it was very draining, very tiring, it affected me differently 'cause I wasn't able to be the mother that I wanted to be, wasn't able to be present like I wanted to be.

Like I would still take care of my mother, come home from work and turn around and go to a football game or swim practice, you know?

- It affects their spouse or their partner.

It affects their family members across all generations.

- [Herb] As Mama Joe's illness progressed, it became more critical to have all hands on deck.

That meant involving Joy and Eddie's sons, Noah and Jonah.

- So by the time that I can remember anything, she was already kind of far into the stages.

And so to me it was just, that was normal.

I didn't think anything wrong with it.

Like, okay, she's just forgetful sometimes.

That's Mama Joe.

That's my Mama Joe.

- Once I got older and her Alzheimer's started getting worse, I started being able to help out, give her a medicine and do all this stuff.

And for me specifically, she liked me a lot.

I was like her, Noah Woah.

She would literally call me that.

And so I had that special touch and I was able to get her to do things that anyone else wouldn't be able to.

We shared the love for honey buns.

And so sometimes I'll bargain with her with a honey bun and like, "Hey Mama Joe, you take your medicines, you get the honey bun."

And after a couple of tries, it usually works.

Obviously I couldn't do the big things like give her a medicine.

But at times where she just wouldn't come out of her room, I would go check on her, make sure she was all right, if she was just sleeping or what was going on.

So I was just there as company, I would keep her company.

- [Herb] Jonah may feel his contribution was small, but turns out this kind of time spent with a loved one with dementia is just as important as more complex types of medical care and support.

- One of the key things that happens for many with dementia is they are less likely to be outgoing.

They are less likely to seek interaction.

And that's when it's even more important to approach people and try and include them.

- Herb, the clip begins the conversation.

And I purposefully wanted to end the show this way because it's such an important issue that our country is facing a real crisis that's only gonna get more and more severe.

The need for caregiving and support for caregivers.

- One of the things for us, I told you our family is large and so many people we had, I have a sister who was the primary caregiver.

My father was the primary caregiver.

Another sister moved to Houston, Texas to help care for my mother.

I have siblings who live here in central Illinois, Southern Illinois, who played their part from afar.

But Fred, what about when everyone doesn't have a member, 12 people in their family, how do they get the support, right?

What type of support groups are out there?

How was policy helping us with caregiving?

What type of local resources are there?

How do you learn how to be a caregiver, right?

So all these types of pieces, and this isn't specific to Alzheimer's or dementia.

There's all types of illnesses that could happen that may force you to be a caregiver.

While I was actually filming for this project, I became a caregiver overnight.

My wife unexpectedly experienced two strokes in the course of a year, right?

Where's the training manual for that?

So one of the key things we want to do and why it's so important for us to highlight resources is so that individuals and families don't feel alone.

It's one of the worst things that can happen for a patient and for a caregiver is for them to become isolated.

Because then that person who's giving care often ends up needing care.

So that's one of the big goals of the Mama Joe Project, is to highlight those resources wherever we are, and to give people information and hope.

And for us, the hope is in the fact that there is help.

We just have to raise those to the surface and make sure more people are aware of what they are and where they are.

- I'm glad you mentioned that.

And for folks who are watching this program, they can do a search for the Mama Joe Project and find a great website with more resources and more information.

Thank you so much for partnering with us on this and educating people about the documentary and the Mama Joe Project.

- Thanks so much for having me.

I appreciate it.

- Thank you and thank you for joining us on "In Focus."

I'm Fred Martino.

(upbeat music) (upbeat music continues)