Alzheimers: Every Minute Counts

(female narrator) Every day, every night, all across America, families in crisis are reaching out for help. (man) Just so sad seeing a person wither away like this. (woman) He shouldn't be driving, but he does. There's no getting the keys away from him. He's diagnosed with Alzheimer's. Alzheimer's is the biggest epidemic we have in this country. It's a crisis coming down the pike that you can see. (woman) She is combative and difficult. I don't want it to escalate anymore, to get any more violent. (man) Alzheimer's is an epic disease. There is a case every single minute in this country and every 4 seconds around the world. It affects all of us, your family, a friend, your neighbor. This is one of the top 6 things that's going to kill us. (man) I'm taking care of her now almost 10 years from her first diagnosis. (woman) She thinks I'm her mother, our roles are reversed, so what do I do? I'm shocked that people are not panicked about what this disease is going to do to the country or to their families. It's going to sink the healthcare economy, and in turn, sink the national economy. (woman) He's just like, who am I? I don't understand. It will take us down, this disease will take us down. We have a chance to avoid that, but to do so we have to fund the research to find the cure. It's a race against time.

piano plays softly

(female narrator) In this quiet neighborhood in Springfield, Missouri, the Alzheimer's epidemic is a very personal reality. Daisy Duarte spends almost every moment of every day taking care of her mother Sonia. (Daisy) I wake her up, I take her to the bathroom, I sit her down, I strip the bed, I strip all her clothes off, I put her in the shower, I shower her. Abre la boca, saca la lengua. Then I brush her teeth and dress her up, put her on her chair, do her hair and her makeup. But Alzheimer's just, it's a horrible waiting game. You know, it hurts to see someone that's been so independent, that's raised 3 kids, to see her deteriorate year after year after year. It's an emotional roller coaster. She's very loving, but she's regressing. No, mira. Esto es para esto. She hasn't said my name in a long time. Most of the time is when I ask her who am I, she says "Mom." I'm like, I'm not your mom, you're my mom, and then she says yeah. (narrator) Alzheimer's is a degenerative brain disease that slowly but surely destroys memory, thinking, and eventually all ability to function. (Daisy) Me meter a baar, si? Te quedars viendo televisin... (narrator) Sonia's been living with Daisy for the last 5 years. This picture was taken at my sports bar, and this is her beginning stages, she just came to live with me in this picture. This picture here is mine and my mom's first fishing trip together and our first fishing rods I purchased for both of us. This is like 3 years into her illness. I mean, in these pictures she used to eat on her own, she used to tell me when she was hungry, she would still shower herself, she would help me with stuff, like washing dishes, she would still do her own laundry. Now she doesn't do none of the above. Mira. Mrala. (narrator) Daisy has closed her sports bar. She and Sonia live off Sonia's small pension and whatever money Daisy can earn with a few hours a week of part-time work. (Daisy) I get exhausted a lot, a lot. There's days I don't want to get out of bed. My mom knows a lot of the time, I could be having a rough day and I cry, she gets worried, she's like "What's wrong?" Like the words "What's wrong?" comes out of her mouth or "Que pasa?" in Spanish, and it's... It makes you, I don't know, to me it just, it's like I still have my mom. (narrator) Every 6 months, Daisy takes Sonia to St. Louis to see her neurologist for a checkup. (Daisy) Oh, look who's there Mommy! Hi, hi there! Can you shake my hand? Sonia can you shake my hand? Hi. (Daisy) Thank you. Gracias, so how's Mom been doing? She's taken a decline as expected. She's really, really, really stiff, it's like dead weight. It's hard getting in and out of bed. (Dr. Beau Ances) Alright, so she can't even get out of the bed like...? She could walk, but she's stiff, like she's She's really stiff, so that's a decline from before. What about other things that she used to be doing? (Daisy) She stopped feeding herself. (Dr. Ances) Oh really. (Daisy) Very, very, very seldom does she pick up the spoon to eat now. (Dr. Ances) How about memory-wise? How well does she do in recognizing you guys? She doesn't recognize me; she'll look at me, and I'm like, am I your daughter? And she'll be like, "No." "Am I your friend?" "No." "Am I your student?" "No." (Dr. Ances) Do you remember this, who's this? (Daisy) Quin soy yo, mami? (Dr. Ances) In the last 6 months there's been a dramatic decline. She can't even recognize her daughter almost at all and it is very tragic because it really goes to the essence of the person, because it takes away the memories and who that person is. They are really almost a shell of themselves. So there's this last like, is it going to go on for a while? (Dr. Ances) I don't know. (Daisy) There's no timeframe? (Dr. Ances) There's no timeframe, but we can all see this progressing. (Daisy) I almost feel like she declined a lot quicker this time. (Dr. Ances) She has, she has. I'm really worried about Sonia. I'm worried that she'll forget to breathe, she'll forget to swallow correctly and then that may lead to a spiral that she will not be able to break and no matter what Daisy does, there won't be, she won't be able to put the brakes and stop that. Give me some love? (Daisy) I know the time's gonna come when she's not going to be able to walk or get out of bed, but not once have I thought a nursing home would be good for her, not once. I lost my first mom 5 years ago, which is the mom that had me. Alzheimer's is my second mom. (man) This morning it took the first 3 hours being up before she started to recognize me. (woman) And I don't know what to do, I'm, I do lose my patience. (man) We're trying, we're trying, but it's, it's all a little overwhelming. (narrator) Alzheimer's is the most common form of dementia and the 6th leading cause of death in the U.S. (woman) She went to work one time with her clothing totally inside out. (narrator) There are no effective treatments and no known way to prevent it. And the epidemic is projected to grow with stunning speed. (Dr. Rudolph Tanzi) Alzheimer's is the biggest epidemic we have in this country because life span has far outpaced our health span, as we're living much longer than our health can keep up with. Already we see over 5 million Americans living with this disease and those numbers are projected to just skyrocket as the Baby Boomers age and enter the age at higher risk. So we're looking at a tsunami of Alzheimer's Disease in America. And somebody else in the family in most instances has the disease as well because they have to take care of the person, so that could be upwards of 25 or 30 million people whose principal life's mission is just dealing with Alzheimer's. (man) First time giving us a call? (narrator) In Chicago, at the National Office of the Alzheimer's Association, 24-hour help lines never stop ringing. (woman) You're still driving, correct? (man) Did you get our phone number from a doctor, how did you learn about us? Calls are constantly coming in, Mondays are usually the busiest. All day long, all day long, all night long. And sometimes they're sad and emotional calls when you're first diagnose, and so it's very hard. No, unfortunately there's no way to actually prevent Alzheimer's from going its course, unfortunately. You have them even break down on the phone because they're very scared about what's going on with the changes that they're going through. (David Parris) They want, they want a pill they can take, and the agents often will say, well, I've got somebody very angry at me on the other end of the phone. Alrighty, bye, bye. Those are difficult calls, to face someone and say we don't have treatment right now, we don't have a cure. This is unfortunately going to be the way it is until it gets worse. (narrator) The state at the epicenter of the Alzheimer's epidemic is Florida. There are at least half a million patients here, and the number of people at risk increases every year. (woman) We have the highest number of 60-plus adults in the country, and our population is just expanding like never before. When you put forward the simple mathematics of dementia and Alzheimer's patients, we're looking at as many as 750,000 Alzheimer's patients in the next 15 years. (narrator) One of those patients is Phyllis Shannon. (Phyllis) Dick's in the hospital, so I've been visiting the sick. (narrator) She's 89, and she lives outside of Tampa. (Phyllis) And I can't find my car keys. (woman) I don't think you have a car anymore Grandma. (Phyllis) What happened to it? (woman) I think the engine blew up. (Phyllis) Oh really? (Rick Shannon) Mom has been unpredictable, is probably an understatement. (Phyllis) It's awful. Probably goes back 5, 10 years. I think we started noticing the repeating every, at that time it's probably 10 minutes, she'd come back and ask the same question. My car's out in the garage isn't it? (woman) No, you don't have a car anymore, the engine blew up. When did that happen? Oh, a while ago. It seems like more recently it's been not even a minute. (Phyllis) Where's my car? (woman) It broke. (Rick) Mom. (Phyllis) What? (Rick) Ma, I just brought over dinner, get a bite to eat, we'll find your purse. How can I lose a purse in this house? (narrator) Phyllis has been living alone since her husband Dick died 7 months ago. (Rick) Mom, that's alright, come on. (Rick) The time that it's really hit me as far as her condition, a lot of it was after Dad died. Well, it's probably right in front of us, so... somewhere. (Phyllis) Maybe it's in the car. (Rick) Sometimes she'll go oh yeah, Dick's gone, he's dead, and then in the next breath she'll go well, I've got to go check on Dick, you know, he's been in bed all day, sick and not feeling good. How many places have you got to go? To see Dick. Okay. And where else? (Phyllis) That's all. (Rick) Yeah. More recently she informed me that Dad was over there in the park, and he was going fishing. So I said Mom, no he's not. So I turned my back and had gone into the house for something, came out, and she was gone. (narrator) Phyllis left the house and walked several blocks looking for her husband. Rick found her near the edge of a lake in a secluded park. (Rick) I was between frantic with her taking off and getting upset. There's gators over there in that park, there's, I'm not going to say hoodlums, but there's other characters over there that hang out in the park. She could easily gotten hurt, yet alone to have her trip and fall, and there's nobody around. The worst part was some weeks ago we had some leftovers for her to eat later. Came into the house and it was all smoke, I mean, just like what the heck is she? You know. Go into the kitchen and there's a paper plate next to the sink with the chicken on top of it and the paper plate is burnt. What did she do? "I tried to heat up the chicken"-- on broil. (narrator) Rick took the fuses out of Phyllis' stove and microwave, but the fire made him realize that it's really not possible for her to live alone any longer. (Rick) When Dad was still alive, one of the things that he wanted more than anything was for Mom to stay in that house for-- till she passed.

with emotion

Um, it, we've tried, but as much as I'd love to be able to honor him with that wish, it's just, I can't. (narrator) Rick's decided to look for a safer place for Phyllis. And in Florida, there's a booming industry in assisted living facilities that specialize in Alzheimer's and other forms of dementia. Hey! Hey, how you doing? I'm good. It's good to see you again! You ready for this? Aw no, I don't think so, but we know it's got to happen. I know, I know. (narrator) Sandy Goldman is the marketing director at Seasons Memory Care, a new facility near Rick's house. (Rick) What do we got goin' on? (Sandy) Well, you know that we have activities nonstop. Memory Care residents are very labor intensive in terms of all the things that we have to do for them. Most of 'em have shuffling gate, so we have to watch them more closely. They need encouragement to eat and drink because they don't always remember to do that. So we need to have more staff, we need to have more qualified staff and a higher level of nursing education. (Rick) We thought that was such a cool idea. (narrator) In addition to high level of staffing, the building's been designed to minimize stress and confusion. (Sandy) The colors are very specific Pantone hues, again to lower anxiety. We have these satellite dining rooms. They can eat anywhere they want, okay? This is a little nook and... (narrator) State of the art care at facilities like this comes with a high price tag. (Sandy) But it's just a nice little quiet area. (narrator) The average cost in the Tampa area ranges from a low of about $4,000 for a shared room to more than $6,000 per month. (Sandy) A couple of the features that you'll notice The cost is high, I can't deny that. The beds are lower, because we tend to shrink. The costs, I think, are surprising to many and I don't know why, because if you logically think about how much an apartment costs, and then you add utilities, and then you add the food and everything else, that starts bumping up. Now you start adding the nursing care and the transportation and everything that's wrapped into it. No, I was absolutely dumbfounded. It's a loved one, I mean, it's my mom, no cost should be too high, but it's like "holy crap!" We have an all-inclusive price so that whatever we have to do to take care of her, as someone that's involved in admissions, it's very hard for me because I know the agony that the families go through. How do they come up with $4,000, $5,000, $6,000 a month? Meanwhile, the family is also putting people, kids through college and looking at their own retirement. So it's just this horrible, the cost is just a horrible, vicious cycle, that it's heartbreaking in some ways. Look, we're, we're privileged to take care of your mom. (narrator) But for Rick, the heartbreak is about more than the cost. Right, and we'll take care of it. I know. We'll take care of it. (Rick) I feel a little guilty because this was one of the things my dad did not want to happen. He asked me I don't know how many times when he was passing, that you know, can you...

with much emotion

can you please make sure that your mom stays in the house as long as we can. (Sandy) Well, we're here for you. (Rick) Thank you.

Rick sighs

And I just gotta get it through my thick head that this is the right thing to do. (man) Lately she's been looking in the mirror at herself trying to recognize herself, I think. So many people have said, put her in the daycare, Alzheimer's daycare. I said that would kill her. (woman) Now we're considering doing home care, but I don't know how to go about that. (man) And we're trying to get financial things in order and understand what we're playing with. Alzheimer's is the most expensive disease in America. It exceeds the cost of cancer, it exceeds the cost of heart disease and it's skyrocketing at a rate that you rarely see with a chronic disease. Now, when the number of patients triples in the years ahead, that means that the number of dollars is going to explode as well, and the budget to just take care of Alzheimer's in America, will be equal to the defense budget of our country. And most of those costs are going to be borne by the taxpayer by Medicare and Medicaid. About 2/3rds of the costs, and that's going to bankrupt the system. I think it's no question that, in fact, Alzheimer's will be the financial sinkhole of the 21st century. So it's huge problem, it's only going to get worse because right now we have no drugs that can stop the progress of this disease.

a siren wails

(narrator) Despite the fact that there is no treatment for Alzheimer's, it's creating a crisis in emergency rooms across the country. But I wanted to show you this. (woman) We see patients coming into the emergency department that have a history of Alzheimer's Disease or some form of dementia every day, 365 days of the year. A 95-year-old, a 66, an 81-year-old. (narrator) Alzheimer's patients come to the ER for many reasons, but often, when they arrive, the doctors and nurses have no way to know what's wrong. (man) He's a 70-year-old gentleman (Dr. Shan Liu) With patients who are demented, you oftentimes don't have anything to go on, no history, and so the workup is more comprehensive and therefore takes a longer time. (man) I fell. (woman) You fell? When did you fall? Do you know? (Joyce McIntyre) They probably will get an EKG, they're certainly gonna get a neuro exam, we will be doing some bloodwork for the patient. Can you look over here? I'm going to shine a light in your eye. Okay? (Joyce McIntyre) Depending on what their past history might be, And this person will come back here anyways. (Joyce McIntyre) They're going to get a head CAT scan and try to find out is there anything on that head CAT scan. It's definitely like a snowball. (Dr. Liu) Um, so I probably would scan him, I think. (Joyce McIntyre) You're doing some testing, you're trying to find out what's going on and you've got to keep looking until we can figure out what that something is. (narrator) Every test adds to the cost, and the workups are complicated by the fact that almost every patient with Alzheimer's also has many other health issues. (Joyce McIntyre) Many of these patients will have multiple medications and they, depending on their stage of Alzheimer's Disease, they may not understand when to take them. (Dr. Liu) They can't tell you I feel lightheaded because I'm taking this medication, or every time I take this medication you just know that something's not right so it makes it more challenging to take care of this fragile population. People with Alzheimer's are admitted to the hospital twice as often as people the same age without Alzheimer's. Their costs for hospital admissions are almost 3 times as high. They tend to stay longer and be readmitted more often. Hospital care is the most expensive part of the health care system. Since the majority of Alzheimer's patients are over 65, they're mostly covered by federal dollars through Medicare. On Medicare right now, paying for the care of people with Alzheimer's disease is 1 in every 5 Medicare dollars, and that's projected to go to 1 to every 3. That has a huge impact on government spending on the health of the Medicare program. He's in 45. I hate to interrupt. (narrator) It's not only Alzheimer's patients themselves who drive up costs in the ER. The stress of taking care of them often sends their spouses or other relatives into the hospital as well.

steady beeping

(woman) There's a cardiac arrest going on and it's somebody who's 90 years old. One of the things, and I'm not sure about this one, but one of the things with the Alzheimer's and the dementia is that we get patients in who are the caregivers for other family members at home and so not only are we taking care of the patient as they come in, we have to take care of the family member because they can't function. (Dr. Liu) And sometimes in those situations, if the demented patient has come, we might have to admit them both, even if the demented patient had nothing, no complaint. (narrator) And perhaps the most surprising cost of all comes when families get so overwhelmed that they use the ER as their last resort. (woman) We call it granny dumping. We see granny dumping a lot around the holidays. Somebody wants to go away or they need a break or whatever, so they will just, we've actually had people pull up out front and let this person out of the car knowing that somebody would grab them and we can't figure out who the relatives are, and the patient can't tell us. We typically bring them into the hospital, it's called a social admit, which we're not supposed to do because Medicare doesn't pay for a social admit. But you clearly can't send somebody out without a safe discharge. (narrator) Some Alzheimer's patients end up staying for weeks until their families can be found or other arrangements are made for their care. There was nobody with him. (narrator) This can cost a hospital hundreds of thousands of dollars. Hi. So he's here, he is definitely going to be admitted. (narrator) And as the epidemic continues to grow, the costs will only go up. (Joyce McIntyre) This is definitely the future, it's gonna happen. It's gonna cost a lot of money to take care of these patients. (narrator) Unlike most people with Alzheimer's, Sonia is young. She's only 60 years old. She has a rare form of the disease caused by a genetic mutation that runs in families, and that meant that Daisy herself faced an excruciating decision. Once my mom got the mutation, I had a 50/50 chance of having it, and no one was going to stop me. I just wanted to know. When I was going to give the blood for the testing, I told my mom to stay with one of my friends and she's like, "Why," and I said, "Ma, I'm gonna go get blood work, you stay here, and I'll be back." At that time she was talking very little. She's like, it's okay, you're not sick. And she kissed me on my forehead, and I went on my way. And I looked, and I said, that's mother's intuition, I don't think I have it. The day that Daisy got the news was very nerve-wracking, lots of tension before we went over there to meet with the genetic counselor. And I think the whole time Daisy was struggling between I don't have it, I know in my soul I don't have it, and the fear of what if I do? It was a tough day, I'll never forget that day. When I came down to get her to bring her up to my office to talk to her, she had several people accompanying her that day and so we were just standing around talking about the trips that she was taking with her mother. And one of the people said, well, you already know the results, don't you? I said yes, and tried to continue on with the conversation, and they said well it must be good news because you're smiling. When the genetic counselor told me about the mutation, I was, I was in shock, I just cried.

with emotion

I for sure thought I didn't have it. (narrator) The mutation Daisy inherited means she is guaranteed to get Alzheimer's, probably before she turns 60. (Dr. Ances) It is very tragic because that's what's going to happen to her in about 15 years. She's seeing herself in the mirror. Yeah, I can. Okay. Good, how are you? (woman) Good. Hi. Hey! Hey, how are you doing? (narrator) The only chance for Daisy to avoid Alzheimer's is a trial of a new experimental drug. (Daisy) Washington University was doing a clinical trial, and Dr. Ances asked me if I wanted to be involved, and I said yes. He's like well, just take time to think about it. I said I don't have nothing to think about, I know I want to do it. Yeah, I wore this just for you since you're from St. Louis. Yeah, I'm just jealous, the Cardinals. (narrator) Every month, Kristina Flegel a nurse from Washington University comes to Daisy's house to give her 2 injections. (Kristina) 132 over 78. I think it was the 1st or 2nd visit that I had here with Daisy and when I was asking her about when she found out and why she chose to know if she had the gene or not, and she said, even if it doesn't help me, maybe down the road some of my nieces or nephews or other people, this will be able to benefit them. Okay, so it's going to be over 30 seconds. Okay, left lower, right upper okay? It'll be good. Okay (narrator) The drugs in this trial are designed to try to prevent Alzheimer's. Long before Daisy starts losing her memory. (Kristina) Okay, are you ready? Okay, you're done for a month. (narrator) Starting treatment this early is a new approach after years of failure with previous trials. (Dr. Ances) We've always been concentrating drugs on these individuals at the end stage of the disease. By that time the horse is out of the barn. We're now starting to concentrate on, can we give therapy much earlier in the disease? That's where we can intervene and really make a difference. If it works, that's a big if. (narrator) Neither Daisy nor Kristina knows if she's actually getting one of the trial drugs or a placebo. And even if she is getting a drug, it will be years before anyone can tell if it's been a success. (Kristina) She was really the first person in the trial that I felt closest with and it's hard not to, it's hard not to get close to people when you're in their homes, but it also makes it...

with much emotion

it makes it a little bit harder because... you just want, you want it to work, you want what you're doing to work. (Daisy) I chose to do it because 75% of my family has had Alzheimer's. I wasn't going to be, I wasn't going to make another percentage in that number, so I feel that I'm at least doing something, I'm not just sitting there moping that I have a genetic mutation. I'm standing up for the disease. (Phyllis) The service here is very good. Good. I'm surprised, do you work here? (narrator) Phyllis Shannon has been at Seasons for 3 weeks. Oh, I'm an RN, but I don't-- I'm semi-retired. (narrator) Now Rick has to figure out how to pay for it. (Rick) Every dollar that my father left, the life insurance, their accounts that they had, the savings, will all go to her care. (narrator) The money Rick's father left Phyllis won't last very long. But there's other things to consider too. (narrator) So he's come to meet with Brooks Gentry, a specialist in elder law. (Brooks) If you have a diagnosis of Alzheimer's or other dementias, it's truly something that can take 10, 15, 20 years to play out. That's hundreds of thousands of dollars over the decades that may have to be sustained, and it's incredibly difficult for families to understand that. I'm asking you like you know, but it's just, Have they been working with you on the numbers? As long as they get their check, I don't, it seems like they're not concerned about where it comes from. (narrator) Like most people, Rick's first thought was that Medicare might help pay for Seasons. Medicare, I just presumed there would be some benefit in there that would cover the cost, but this has been a whole new education. And then if there's still rent left to be paid, that's going to have to come out of pocket. (narrator) What he discovered is that neither Medicare nor private health insurance pays for the kind of care Phyllis needs. (Brooks) If Medicaid comes into the mix, which, of course, is our goal... (narrator) When her savings have been spent down to only $2,000, Brooks will help Rick apply for another government program, Medicaid. Medicaid is a federal program, but it's delivered by the states. And it's the state that determines how much money will be applied for the various programs. (narrator) This office near Tampa is one of 11 agencies across the state that process applications for Medicaid to help families pay for long-term care. (woman) 863 68281 (narrator) All of them are swamped with calls. (woman) Every single day, every single day, I get, like I say, like I said 15 or 20 calls, people calling with parents with Alzheimer's and dementia. Alright, she's partially in the system. (narrator) Florida's Medicaid spending on Alzheimer's has increased by more than 600% since 2006. As the epidemic continues, this strain on the state's budget could mean difficult tradeoffs. When you look at a state budget, you're looking at a number of competing uses, you're looking at a number of public functions, public safety, healthcare, education, transportation infrastructure, economic development, environmental protection, and really competing for those resources. So when something like healthcare, and especially long-term care comes along and really takes a portion of that money off the table, then that just leaves less for everything else. (woman) Any arthritis? Okay. (narrator) The huge demand for Medicaid with a finite amount of funding means there's not enough money to assist even a fraction of all the families who call. (woman) Since it is a Medicaid program, they place her on the waiting list. The biggest surprise is the waiting list, that the funding is not available right away. "What do you mean a waiting list?" they'll ask that. And "How long will I have to wait? Will I get called next week?" The client is 90 years old. I've known families who have had their loved ones on the waiting list for as long as 5 years. Meanwhile they've been private paying several thousand dollars a month, which eventually runs out from the parent's resources, and then it becomes the children's responsibility to fill in that gap. Well, you won't lose wait if you eat lunch and dinner. (narrator) Even if she qualifies for Medicaid at some point, there's another potential problem for Phyllis. The state can't pay even half of what a place like Seasons actually costs. (Sandy Goldman) In a memory care situation, I can't imagine how you break even when you're under Medicaid. You can't keep up the care; you can't pay for the care, and the food and the quality-- forget the other services, the programs and everything. You just, you can't. (narrator) That hard reality means that sometimes patients who run out of money and have only Medicaid to support them, have to leave. As a community, we're between a rock and a hard place because we still have to make a profit, that's the bad word, but we still have to make a profit. We're going to do everything we can to keep our residents where they are, but at some point, if they can't afford us, they may have to move. Oh, that's a cute puppy! (Brooks Gentry) With Rick's mom's current asset portfolio, she could probably sustain no more than just a few months of private pay. I'm turned around, which is, where's the main entrance? (Brooks) Then it'll be upon Rick and his family and siblings to pay the difference until she can hopefully get picked up by Medicaid, and without knowing where she is on the waiting list, it's a waiting game, we don't know... we just don't know. (narrator) 1500 miles north of Florida, in a much smaller state, the Alzheimer's epidemic is creating a different set of issues. (man) New Hampshire is one of the fastest-growing elderly populations in the nation. The median age here actually is older than that in Florida. New Hampshire was one of the greatest recipients of Baby Boomers in the Northeast. Beginning in the '70s, '80s and '90s, there was a massive migration out of the Boston area and really what we're seeing now is that Baby Boomer population aging. We're also not keeping our young folks here in New Hampshire, so the people who are tasked with taking care of people at end stage of their life, they're not here, they're leaving the state actually in droves. Hi guys. (narrator) The people at the front lines of the epidemic here are family doctors in tiny isolated villages. (woman) We're the only medical practice in the village. I have about 700 patients and have known most of them for, some of them all of my life. (narrator) Melanie Lawrence sees families coping with Alzheimer's every day. With Alzheimer's it's-- I'm not the only one involved with that. (narrator) Carol Stickney, is 82. Was a chore to take care of. (narrator) She takes care of her husband, who's 86. My husband's mother and 3 sisters all had Alzheimer's and I never looked for it in my own husband. You just don't think about it... until it happens. (Dr. Lawrence) And did anybody else in your family have Alzheimer's? (narrator) Stacey Dunham's mother and father both have dementia. You never really can understand what effect it has on your life. It's one thing to be a parent to your children, but to be a parent to your parent is another. (narrator) Jean Wheeler is another one of Melanie Lawrence's patients. She's been having trouble with her memory, and Melanie sent her to a specialist for Alzheimer's testing. Dr. Lawrence should be right down. Nice seeing you Jean. (Jean) Thank you. (narrator) Jean's daughter, Tara, lives 2 hours away in Vermont. She's come to be with her mother to get the results. Hi guys. Hello. (Jean) I haven't been in this room before. I know, usually we put the little kids in here. I like the height of that table. It is a good height, isn't it? So after, after all of that testing, the doctor called me, and he saw very early stages of Alzheimer's. I mean, you kinda knew part of this was coming, but how does it feel to have me actually like say that out loud? Not good. Um-hm. I don't think I'm gonna panic. (Tara) When they first officially said the Alzheimer's word, it, it's kinda hard to explain, because all of a sudden it brings you more aware that it's gonna be a progression and I'm gonna be watching my mom go from an able, competent, take care of everything situation to being the one being taken care of. (narrator) Like almost 40% of all people with memory problems in New Hampshire, Jean lives alone. (Jean) Living by yourself as you get older, there aren't as many ups and downs, but I just don't like the feeling of being helpless or needing the help. (Dr. Melanie Lawrence) Right now it's very scary to Jean to think about losing her independence. She's very clear; she wants to stay in her home as long as possible. But with Alzheimer's, it's a particular challenge because we're so far away from anyplace. (narrator) When someone is diagnosed with Alzheimer's here, their options are very different from Florida. (Steve Norton) In some areas of the state, there are no services. There is no hospital, there is no public transportation system. We've been struggling as a state for 25 years, health manpower shortage areas, trying to bring in physicians and it's never been easy, and it's only going to get harder. (narrator) There's not only a shortage of doctors here, there are also not enough facilities to take care of Alzheimer's patients. In fact, the state has put policies in place that are designed to try to keep people out of nursing homes. (Steve Norton) Back in 1996, the state put together a plan to limit the growth of nursing home beds and put a moratorium on the construction of those nursing home beds, so since 1996 we haven't seen any new construction of nursing home beds. (narrator) The nursing home moratorium was intended to help limit the state's Medicaid spending and to encourage patients to be cared for in their communities. But with so many Alzheimer's patients living alone, this policy brings risks. (Dr. Lawrence) The first thing that I worry about is falls, and I've had a lot of patients who live alone that fall and are left for hours before somebody can find them. They're at risk to have safety problems. They can leave on the stove and have fires that can occur. When they live with somebody else, those people are going around behind them, turning off the stove, hanging up the phone, turning off the iron, and when they're by themselves, there's nobody there to do that. (narrator) During the long winters here, there's another significant danger. 6 out of every 10 Alzheimer's patients will wander at some point. State Fish and Wildlife officers are often called to search. (man) Whenever we get a call for an Alzheimer's patient, you think about things a little bit differently because they're not necessarily going to do things that a regular person would do. They may go into a hazard the normal person who is lost or missing would skirt around. So when you look out across these water bodies with this dusting of snow that we got, it all looks nice and sturdy and strong, but it's really not. If you were to walk on to that, you're certainly going to break through. The water temperature's about 34 degrees probably, and that just sucks the heat right out of people. So it really is a challenge because the more time that goes by the less positive outcome you're gonna have. (narrator) The state does provide some services that help people stay safe at home, but as the number of Alzheimer's patients has increased, funding for community services has not been able to keep up. Hey Lily, in the house. Right now we don't have the appropriate financing mechanisms to provide the type of long-term care supports in the home that we need. And there need to be significant reforms to get there. The State of New Hampshire has no sales tax, no income tax, has relied on corporate taxes to fund its public services, education, the long-term care system and the like, and the conversations that are occurring right now is, is that really going to work? What are we going to have to trim in order to meet this particular ballooning expense for the country and for individual states and at what cost? (narrator) But for Jean, there's no question what an Alzheimer's diagnosis will mean. Jean's future is not rosy. I think that she might be able to stay in her own house maybe for a year, but I'm not really sure that's going to make sense. Jean is going to lose her memory of herself and her life and her children and her grandchildren. I can almost see, you know, flash pictures in front of me of what that, that sad story is going to look like over the next few years. Whatcha doin'? Oh I've been waiting for someone. Oh, I'm so glad you're here. What's goin' on? What, bored. Bored. I brought you some chocolate. (Phyllis) Did ya? (Rick) Yeah. Well, we gotta have lunch. You hungry enough to...? (Phyllis) Just a little lunch. (narrator) Rick is still waiting to hear if Phyllis will qualify for Medicaid. But at the moment, he's got a different issue to deal with. (Rick) For the first week here, checking on her, we thought aw, this is going to be sweet! She's happy, I mean, she likes walking around and she's enjoying the whole area; that first week was, was excellent. Well, that didn't last long. (woman) Excuse me. (Rick) Oh, thank you, thank you, it's wonderful, thank you. It was shortly after that we came back for another visit that she had packed up her stuff in a basket and a couple of bags, then turned around and packed up all her roommates stuff, the toiletries, everything that was on a side shelf, and she was in the room going, I'm ready to go, I need to go home. Terrible. What's terrible? It's a beautiful place. Well, it's beautiful, that has nothing to do with it. I just want to be in my own home. There's nothing going on there. I still have the house. The house we had to sell. Oh you sold the house? Yeah, we had to sell it. So where am I living? Right here, right now, you're in good shape. For how long? Well, for a while. Oh, well I think it's time to move on. Well, you can't be in an apartment or a home by yourself. You've got a nice place here. Looks like you got your hair done. What about my house? Your house was sold. You sold my house? Mm-hm. (Rick) It's just gut-wrenching when she looks at you going I'm not happy here, I want to go home. Surely one of my children would give me a room at their house. Well, they're all working. The guilt that children feel or spouses feel of admitting a loved one into an assisted living scenario is huge, and Rick is a very good example of it. Do you want me to bring down one of the albums? (Sandy Goldman) You could see the conflict in his face. It's heartbreaking, but it is more the norm than not the norm when it comes to this disease. (Rick) You wanna go sit out there? I'm gonna go drop this off in your room. Okay? I'm happy that she's in a safe place. Go sit down and get comfortable. Our hopes are that she'll settle down, get into the routine. I just don't know what to tell her other than yeah, another day, another week, we'll see how it goes-- I'm hoping she settles. I think like any child, you want what's best for Mom. (narrator) As with every major health threat, money for basic research on Alzheimer's comes primarily from the federal government. But for many years, that funding was significantly lower than for other diseases. (Dr. Rudolph Tanzi) If you look at the top 10 diseases of how people die, Alzheimer's Disease is the only one where there are no survivors and there is nothing we can do to prevent it or stop the progress of the disease. In all other cases-- heart disease, cancer, diabetes, HIV, stroke, all of these cases, there are ways to get survivors, to slow down the disease, or even prevent it early on. The NIH spends over $5 billion a year doing cancer research and $3 billion on HIV AIDS research, spends $2 billion a year on cardiovascular research. Those are all really good things, and we've made progress. Breast and prostate cancer deaths are down, HIV AIDS deaths are down by over 50%, heart disease, the number 1 killer in America, deaths are down. Unfortunately, we have not made a similar investment in Alzheimer's Disease research. Since 2000, the deaths from Alzheimer's have gone up 71%. (narrator) In the face of those dire statistics and the projected tsunami of Alzheimer's among Baby Boomers, starting in 2015, Congress began making significant increases in funding for research. More than 80 drugs are in development and new opportunities for progress could be on the horizon. Over the last 5 years, there's been much more awareness of the huge problem that Alzheimer's represents in our society, and we're starting to see the benefits now. It's still a drop in the bucket; given how big this problem is, given how much we know and what we can do, and how little we're doing with the knowledge we have. We need 10 times more, we need billions of dollars a year thrown at this disease. (narrator) In the spring of 2016, Daisy left Sonia in the care of a friend and came to Washington. (man) Daisy. (narrator) She's here to lobby members of Congress for research money for Alzheimer's. Hello George. Senator, good to see you. This is Daisy Duarte. And you must be Daisy. I read about you. Ed Markey. Good to meet you Daisy. (Daisy) Any chance I have to raise awareness, I take it. We just need more people to support and get involved with Alzheimer's-- research, clinical trials. If you don't speak up, no one's going to hear you. This is my mother; my mother had it, and she didn't pass away until 1998 and you know how hard it is, the same story as you, what you did my father did. (Daisy) When you love someone that much, you just go beyond. Daisy, my mom had it for 11 years and she didn't even speak the last 9 years. (Sen. Edward Markey) Alzheimer's is unlike any other disease. The people with the disease, for the most part, cannot lobby for the disease. So it's people like Daisy who put the human face on it. When you got tested, you did have 1 of the 3? (Daisy) Yes. And did your siblings get tested too? They have kids, they don't want to know. They don't wanna know? I've lost a lot of family members to Alzheimer's, I have, so... Yeah, 75% of my family has it. Wow! Has passed away with it. (Daisy) The last few days have been amazing, just to see, just the senators go through what I'm going through. It's touching, it's very touching. My mom's always been a fighter, and that's how I was raised. We fight for what you believe in, and I really believe that if all the advocacy I'm doing, it's going to get us somewhere. (Matthew Baumgart) I think, from around the country, in the last several years, you've seen this groundswell, this movement of people who have been affected by this disease much more willing to speak up, much more willing to fight and make their voices heard. We have to draw the smartest people in America and across the planet to the work of doing the research to find the clues so that we can harness all of the talent that's needed to cure this disease. If we can make that kind of difference, if we have drugs, if we come up with new medications that could push it aside, it won't just impact the United States, it'll impact the world. And then you'll see that this huge scourge on society, this huge medical need, will start to slowly fade; that's going to be the goal-- and it's doable. (narrator) When she got home from Washington, Daisy had to face a new reality with Sonia. (Daisy) It's getting a lot tougher on me, a lot. Her breathing, I could tell sometimes it's, it's not good. I get scared that she might stop breathing. Dr. Beau Ances on the last visit said, "We need to get hospice in." (woman) Does she like, eat oatmeal too? (Daisy) She likes oatmeal. Yeah, but I have to like give her some yogurt, some oatmeal, some yogurt, some oatmeal. I've always been against any kind of help because I always felt that I would have to put her in a home or something like that, and I was totally wrong. Your hair looks pretty today, yeah. Well, I'll turn you around a little bit. (Daisy) I've had a great nurse. (woman) Did you guys get caught up on your sleep? (Daisy) No. And now a volunteer that comes out once a week, twice a week, you need it, even though you say you don't need it, you do need it. I've realized I do need it. (woman) And if you don't hear from her before you need a day, just work it out with your volunteer. I want you to use them as much as you can because you have a lot going on. (Daisy) I am mentally, physically, emotionally drained, but I'm still going to keep her here.

with emotion

I know that if it was me having this disease, everything I'm doing, she would do it tenfold, without a doubt. If I left this world right now, my one purpose was I stood up to this disease, and I fought it to the end. I will die fighting this disease. (man) Corpor plays softly] (man) To learn more about Alzheime