>> When our communities need help, Blue Cross and Blue Shield companies step up with partnerships capable of preparing meals for thousands of families in need, because it's not just about health insurance.

We believe it's our responsibility to expand care to rural communities, protect our heroes with safety equipment, support local nonprofits.

These are our stories to help build stronger communities for the health of America.

>> "Second Opinion with Joan Lunden" is produced in conjunction with UR Medicine, part of University of Rochester Medical Center, Rochester, New York.

>> Alzheimer's disease is an under-recognized public-health crisis, and the number of people with Alzheimer's disease globally is expected to double every 20 years.

And not only does Alzheimer's come with a tremendous cost to our healthcare system, it takes an emotional toll on families as they care for their loved one while watching them slip away.

Today we will look at Alzheimer's disease from the perspective of the caregiver and from a public-health perspective.

Joining us in our conversation is primary care physician Dr. Lou Papa from the University of Rochester Medical Center... >> The good news is, it's the stuff we overhear about, and the bad news is, it's the stuff we always hear about.

>> ...Dr. Maria Carrillo, Chief Science Officer at the Alzheimer's Association... >> We are pushing for those treatments that will slow or stop this disease.

>> ...and Dr. Richard Hodes, the Director of the National Institute of Aging at the NIH... >> Probably important to stress that it's not a uniform disease in all individuals.

>> ...and she is an Emmy-winning TV host and best-selling author, but my friend Leeza Gibbons tells me her most fulfilling role was caring for her mother, who had Alzheimer's disease.

And today she is a health advocate for other family caregivers.

>> But there are so many things that we can do.

You know, we focus on what's left and not what's lost.

>> And I'm Joan Lunden.

It's all coming up here on "Second Opinion."

The word Alzheimer's strikes fear in aging Americans I think more than any other word.

While occasionally losing your keys or forgetting to pay a bill may be worrisome to you, it's actually pretty normal.

However, Alzheimer's is not a normal part of aging.

When a loved one starts to show signs of significant memory loss, it is scary.

We thank all of you for being here on the panel today.

Leeza, I want to start with you.

We've talked about this so many times.

>> Yeah.

>> And I know there came a time when the worries -- the worry really increased about your mom's forgetfulness.

But before that, just tell us a little bit about your mom.

>> Well, Joan, my mom was an iced-tea-drinking, yes-ma'am-requiring, no-nonsense Southern woman who taught me never to be too big for my breeches, and at the same time really encouraged me to stay grateful and grounded, just my best friend.

Funny and wise and charming and social and always put together, and those are just among the top-line things that Alzheimer's began to take from her.

>> So what did you start noticing?

>> You know, because she was always so aware of her outer presence, her hygiene began to slip.

She was just -- She didn't seem fresh.

Maybe she wasn't brushing her teeth, and then the chronic sign that I know many of us sharing this time together today can relate to -- the repeating herself.

And, Joan, I thought our family thought, "Well, Mom has a problem with alcohol."

And I was ready to kind of rush in and have an intervention and send her to Betty Ford or some other similar support place.

She was the one who knew that she was headed where her mother was headed because my granny also died with Alzheimer's disease.

>> But she somehow heard what you guys were planning, and so then she came clean with you, right?

She said, "Wait a minute.

That's not the problem.

I got to tell you what the real problem is."

>> Joan, she did.

My mother heard a phone conversation, and she goes, "Listen.

I know what you're all planning.

I know that you're planning to send me to that Henry Ford Center, and I'm not going."

[ Laughs ] So she knew that she was off, you know?

And we have to laugh about the humorous side of this very devastating and brutal journey, which does kind of teach us so much about ourselves.

>> Well, Lou, as a primary care physician, if Leeza and her mom had come into your office, what would you be thinking?

What would you be asking them?

>> Well, it makes a big difference when a family member comes in and reports it.

You know, we all have the same thoughts about forgetting things.

But when a family member comes in, they're usually seeing a pattern.

It's very insightful of her mom that she picked up on it herself and was able to inform them, but lots of times it's the family member that picks it up, and I take that very seriously, and I'll start evaluating for that right away 'cause that's important, especially the hygiene question.

That's a big tip-off.

>> So, that's really where you start trying to figure out and diagnose if somebody is suffering from Alzheimer's.

>> Right.

But before I even get to Alzheimer's, I want to make sure it's not due to other things.

So you hear it -- when we hear about the issue of the alcohol and we hear about the issue of the hygiene issues, it raises a question of depression, so we're going to evaluate for depression.

There are certain conditions that can affect memory, neurologic conditions, so I'll do a neurologic exam.

And there's blood work and other testing, like scans, to evaluate for other things that can play a role.

So, your thyroid can affect your memory.

Certain nutritional deficiencies can affect your memory.

Brain tumors.

Certain neurologic conditions that can be reversed can improve memory, so those are important to pick up early on so you know you're ruling out what we call reversible causes or, you know, treatable causes for memory loss.

>> Well, we all hear about Alzheimer's, but I don't know if everybody really understands what the disease is.

Dr. Carrillo, as Chief Science Officer for the Alzheimer's Association, why don't you explain to everyone what is Alzheimer's?

What's going on in the brain?

>> Well, that's, you know, the, you know, million-dollar question, and we try to explain to people who, you know, live with this and their loved ones like I myself did.

Lost our mother-in-law after eight years with Alzheimer's, and my father-in-law after five with vascular dementia, you know, a related dementia.

You know, we do try to explain to folks that this is a brain disease.

It's not normally aging, so that's important to point out.

And that it is a brain disease that actually now we have hope to understand that it may start even a decade or two prior to those symptoms occurring, which is hopeful for the future, for our future of actually reducing our risk or slowing it down.

It may be closer than we think.

But we try to explain to people that all of these things are important to understand, important to get that accurate diagnosis.

>> And, Dr. Hodes, I think a lot of people say, "Well, what's causing this?"

Do we -- How much do we know about what causes it?

>> Probably important to stress that it's not a uniform disease in all individuals.

So there's the pathologic diagnosis of Alzheimer's that began with Professor Alzheimer over 100 years ago -- plaques and tangles, these lesions in the brain, that now, remarkably -- and we can talk about this in more detail -- can be recognized not only after death but through scans and even approaching blood tests, so there's the pathologic diagnosis of what we call Alzheimer's disease, and we know an awful lot more than we used to about the biology behind it, some of the genes which are risk factors, some of the changes in gene expression, which occur in the progression.

But probably also important to stress early on that all individuals who may have similar signs of dementia -- memory loss and the accompaniments -- may have different contributants.

So there's Alzheimer's disease, plaques and tangles.

We heard mention of vascular dementia.

The vascular changes that occur with aging contribute to the syndrome.

So as we learn more and more, the good news is we learn about multiple potential targets for intervention, translating our basic molecular science into different approaches to prevent and cure the various processes which contribute to Alzheimer's disease, which is what we term the clinical syndrome, the dementia, what we see are the signs and symptoms in the patients who are affected.

>> Are there modifiable risk factors, things that we do in our daily lives that can help at least stave off?

>> Absolutely.

And, you know, it's a familiar list.

You know, the good news is it's the stuff we overhear about, and the bad news is, it's the stuff we always hear about.

So things that have impact on blood flow to the brain will have an impact.

So controlling your blood pressure, not smoking.

If you have diabetes, controlling your diabetes.

Those are important factors.

Having a healthy diet.

You know, we've talked in the past about the effect of inflammation.

You know, having, you know, an anti-inflammatory lifestyle.

You know, it's nebulous for a lot of us in the clinical world, but it's kind of like you know it when you see it, and it's that living that healthier lifestyle.

But those do play an important role.

>> Dr. Hodes, we're all told to exercise, but when you start to understand the importance of nutrients in blood and oxygen going up to the brain and how it can possibly stave off cognitive decline, I think we might get a little -- a few more people out on the road, you know, doing their power walk.

So what have we learned about exercise?

>> Well, you've heard -- expressed the very accurate facts that there are risk factors that are addressable.

So we know that there's a higher risk of developing Alzheimer's-type dementia as a function of sedentary lifestyle, that education can be protective, that diet has an influence.

But for those of us looking for the absolute and specific proof of what works, you know, ultimately it becomes clinical trials.

There are trials right now -- NIA alone is supporting some 230 clinical trials, early stage to late stage.

Some of them are for development of drugs, but a large number are lifestyle interventions of exercise, of diet, of combinations of the two, of cognitive training.

And over the next years, we're going to learn more and more about just what the right prescription is for lifestyle as well as perhaps pharmaceuticals that are going to make a difference in reducing risk.

>> Well, Dr. Carrillo, for everyone to understand of how important it is that we find these different, you know, things that can maybe inhibit that decline, give us a sense of what the cost of taking care of the constantly, you know, increasing number of people who have Alzheimer's, which, of course, is probably correlated with just the increasing -- the aging of our population.

What those numbers would be and what it would mean to this country financially.

>> Yeah, you know, it's so important to think about not only what it costs but that many of those costs are, you know -- involve out-of-pocket costs by caregivers.

People like Leeza and their family, our family who kept our loved one at home and don't realize that in the last years of life, to keep our loved ones with as high a quality of life as possible, we need 24-hour care and support, and so that number that includes, of course, Centers for Medicare and Medicaid, out-of-pocket costs, is over $320 billion.

We'll reach $1.1 trillion by mid-century.

That breaks our bank because -- I wish I could tell you, Joan, that this is for very expensive treatments.

Unfortunately, it's mostly care right now.

We hope, as you just heard from Richard, we hope that the treatments that we're now testing -- you know, we're testing 66 of our own.

You heard Richard's got about 230.

You know, we are pushing for those treatments that will slow or stop this disease.

But until then, we're faced with these costs, and our caregivers are suffering.

There are 16 million estimated caregivers for people with Alzheimer's or another dementia in this country now.

Imagine what they're suffering.

And their lost days of work, lost days of productivity, their lost days of their own future growth is also at risk because not everyone is as lucky as perhaps we were or Leeza in order to keep our loved one protected and at home.

>> Well, I want to hear from the personal cost, Leeza.

What -- When you heard, really, from your mom what was going on, what was the reaction?

I mean, were you guys all shocked that that was what it was?

>> When we face pain, I think we tend to hide, and we have very individual reactions to pain, but what Maria and your experts are saying about this depletion, it starts immediately, and you begin to unravel.

Families deplete financially, and the cost is severe and crippling.

Emotionally, spiritually, physically, you just begin to unravel, and you feel very, very alone.

And I think that it's very typical in families.

You spend a lot of time just numb from the reality.

So, right now, we know that our loved ones, if they're diagnosed with dementia, for example, for Alzheimer's or other dementias, are not going to get better.

It's not going to have a happy ending in that regard.

But there are so many things that we can do.

You know, we focus on what's left and not what's lost.

>> You became a caregiver.

How did your -- that role as a daughter change with your mom?

>> The painful moment for many families is when your loved one can no longer remember who you are.

And I was making the bed with my mom one day, and she goes, "Oh, you're so nice.

You're always so nice to me."

And I said, "Well, of course.

I love you."

"Who are you?"

>> Ahh.

>> You know, "Honey, what's your name?

Who are you?"

And I had that pit in my stomach, and I said, "I'm your daughter.

I love you."

And I began to learn that journey from that moment that, you know, they can't join us in our world.

We have to join them in their world where they are, and no matter how deep into the rabbit hole Alzheimer's will take you, love is love, and I believe that the loved ones perceive "that's a person touching me now.

That's a person reading to me.

That's a person bathing me or combing my hair that loves me."

And that's enough.

>> That is so well said and so important for people to hear.

Dr. Hodes, do we know who's most likely to get Alzheimer's?

>> We know that there are factors such as high blood pressure, inactivity.

There are racial and sexual differences in risk as well.

These are all relative.

None of them is going to predict who's going to get the disease and who is not.

I did want to follow up from Leeza's very touching and emotional recounting of what it's like to deal with it.

You know, for me, it was my mother and before that, my grandmother.

All of us have had these experiences.

But I do want to stress that in addition to the very important research that we're all doing, trying to understand Alzheimer's disease, related dementias, eventually treat and cure or prevent them, there's also very important research going on now to try to understand how to help people best cope with the disease, those who live with the disease and those who are caring for them.

So care and caregiving as a research area is a very important part of what we, the Alzheimer's Association, and other of the funders of research are engaged in, too.

There's more to be learned about the way in which we can best help provide respite for those who are taking care of their loved ones, which is both rewarding but also -- also exhausting.

So -- And maybe when we're talking about research, one more thing to add is that we're so grateful for this chance to talk to audiences such as yours about the research that goes on.

One critical aspect of all this research is the participation of people -- people who have Alzheimer's disease, people who are caring for them.

And as we're talking about looking to prevent Alzheimer's disease, we need to recruit people into clinical trials and clinical studies, all kinds of clinical research, who don't come to research because their doctor made a diagnosis and then referral.

These are individuals who may e at risk and may not be aware of it.

So I just want to encourage, and the Alzheimer's Association and NIA, all of us have outreach projects which are aimed at recruiting people into research.

And diverse populations, too.

Some of those very populations who are at highest risk for Alzheimer's disease in our country certainly includes Black African-Americans, Hispanics.

These are those who are least well-represented in research.

So, recruitment of people, the heroes, really, among them, are not just the researchers but those who have the courage to participate in research, from the stage of prevention all the way through the course of the disease and caring for those with disease.

>> And that research is just essential.

Also, the heroes are also the caregivers.

>> Mm-hmm.

>> As a primary care physician, do you ask questions?

Is there a way that you can kind of track which patient comes in front of you is also a caregiver and, therefore, you almost have to treat them in a different way?

>> Absolutely right, Joan.

And one of the pluses of being a primary-care doctor is you very often take care of a family.

>> Yeah.

>> So, the daughter or the spouse will very often be a patient of yours, and you can see -- you can see them visibly aged in front of you as time goes on.

And you have to be attuned to that, where they're -- You really can't do anything 24 hours a day.

You need a break from everything.

And to be able to provide that high level of care for somebody is exhausting.

And those patients very often start missing appointments, start not taking care of themselves and missing prescriptions.

They're missing their own care.

>> That's the caregiver burnout.

>> Exactly.

And it's paradoxical, right?

Because they need to be healthy to take care of this individual, and their own care starts to slip.

Just from the medical point of view, the psychological impact and just the wearing-down of it, it's really difficult to see in some of your patients.

>> Leeza, I just have to ask you, are you worried, personally, that -- that you're going to have Alzheimer's?

>> Well, worry causes stress, stress is likely to make me more at risk.

Look, I'm not naive.

I recognize my potential genetic history, although exactly how much of that is genetic predisposition or other factors, you know, I don't like to borrow tomorrow's trouble today.

>> Yeah.

>> But I do want to be incredibly proactive and to be able to tell my children that I'm doing everything I can, which is a lot, by the way, and I hope that's the resounding message that's coming through from this, to keep from getting the disease.

>> I also want you just to talk about what your mom did.

Because she was kind of proactive, and she made a lot of decisions up front to, I think, just to keep you guys from having to make those decisions.

Talk about that so that other people will have the advantage of knowing what she did.

>> Oh, thank you for asking.

This is one of the most remarkable features of my mother's courage and strength, I think.

She lined us all up.

She had, as you recall, first of all, identified her disease, and then, as it began to progress -- still in the early stages, though -- she lined us up, and she said, "Listen.

When I'm kicking and screaming, and I can no longer call you by name, know that that's a disease, and it's not me.

And when that day comes, I don't want to live with any of you."

And she went down the line, and she said, "And, kids, you're gonna have to help Daddy know when it's time to let me go."

And she pulled out some brochures of places she had researched, and she said, "Any of these kinds of places will be fine."

Well, look, for a lot of families, that's culturally not a desirable option, financially it's not an option.

What was beautiful about that moment for us, though, was we had our marching orders, and it allowed our family to come together as a unit and execute mom's wishes.

Because we'd done that thing that's so hard to do -- we had talked about the decline, we had talked about when mom would no longer be with us, when mom would no longer be able to tell us her wishes -- and if families can do that earlier, and that's the early diagnosis, these are all just byproducts of the -- of having the information, having the courage to take those loving steps.

>> And that had to make it easier for all of you.

I mean, this not only changed you as a person, Leeza, but it changed, really, even your career path.

Tell me about the foundation, Leeza's Care Connection.

>> My life -- and people who've been at this moment of diagnosis can all relate to this.

My life didn't make sense anymore the way I was leading it, knowing what I knew.

And you don't know until you're in it, typically, but for me, it allowed me to see a path forward, and this was my mother's wisdom, too.

I was so sad with her, and, "Mom, I don't know how to help, and I don't know what to do, and I don't know how to fix it," and she would say, "Oh, shush, honey."

You know, "You've been a reporter all your life, and you've told stories.

This is now your story.

Go and tell it, but make it count."

And that was my inspiration to reach out and create a caregiving community, which is Leeza's Care Connection, where we help care for our caregivers and help you summon your strength and call on your courage along the way.

>> Dr. Carrillo, what is the best thing to do if you think a loved one may be developing significant memory issues that are just not a normal part of aging?

>> That's a great question.

And we always suggest for folks to just talk to their healthcare practitioner.

So important to get that early diagnosis.

There are ways to actually make it more accurate, especially earlier in the disease process, 'cause it gets trickier to really diagnose it the earlier you go.

And sometimes you do need a specialist, because people might have some atypical presentations, like aggressive behaviors or high anxiety or even hallucinations.

So, important to get that diagnosis as soon as possible.

And then, have a care consultation, whether it's with your doctor's office, whether it's at the hospital, whether it's at the Alzheimer's Association.

Get a consultation that can talk to you about what to expect so that the family can be ready and have these conversations.

Otherwise, families go from crisis to crisis to crisis, and it usually doesn't end as well as if there's a plan.

>> And as a caregiver, Leeza, what do you know now that you wish you knew before your mom developed Alzheimer's disease?

What advice do you want to leave the audience with?

>> I think that you need to be a warrior of wellness and that if you take better care of the caregiver, you're likely to have better outcomes for the care receiver.

There is no caregiver heaven for doing this by yourself.

It is not a path you can walk alone.

We've heard everyone say that today.

Become a master delegator.

And then, focus on what you can control.

And your -- your team that you're coming up with and your resources, it may not be your biological family.

It may be your logical family.

Use them, get skilled in learning to ask for what you need by being as specific as you can, because Dr. Papa said early on, you know, it's exhaustion.

You don't have enough hours in the day.

And people roll their eyes and say, "Oh, really?

You want me to exercise?

You want me to sleep?

You want me to meditate?

All I can do is get to the next morning."

All that's true.

That's why you really need a team of people, and you need to kind of let go of some of those things, and you can focus on nourishing yourself, mind, body, soul, and spirit.

>> Leeza, everything you're saying is just so important for people out there.

Thank you so much for sharing your personal story with us today.

And doctors, all, thank you all for being here today, as well.

And, of course, thank you at home for watching.

You can find more information about this series at secondopinion-tv.org.

You can also follow us Facebook and on YouTube, where you can watch today's episode and much more.

From all of us here at "Second Opinion," we encourage you to take charge of your healthcare.

I'm Joan Lunden.

Be well.

♪♪ ♪♪ ♪♪ ♪♪ ♪♪ >> When our communities need help, Blue Cross and Blue Shield companies step up with partnerships capable of preparing meals for thousands of families in need, because it's not just about health insurance.

We believe it's our responsibility to expand care to rural communities, protect our heroes with safety equipment, support local nonprofits.

These are our stories to help build stronger communities for the health of America.

>> "Second Opinion with Joan Lunden" is produced in conjunction with UR Medicine, part of University of Rochester Medical Center, Rochester, New York.

♪♪