The North Fort Myers retirement community where Barry and Cheryl Lukatch live is a tranquil place, nestled on a golf course, shaded by old-growth trees, populated by folks who wave at passers-by.
The last decade of the couple’s lives has been many things. Tranquil is not one of them.
“As a kid, I used to love riding roller coasters. I didn’t realize I’d be riding one the rest of my life,” Barry says. Cheryl was diagnosed with Alzheimer’s in 2005 after a five-year journey (five years of “hell,” according to her husband) to figure out what was wrong. She was young—just 55 at the time of diagnosis—and ever since, the couple have been working to accommodate Cheryl’s fading memories, preserve her health and capitalize on every bit of joy they can.
“Our commitment in this disease is to spend as much time together as we can. We’ve learned to live in the moment,” Barry says. A few months ago, they traveled with family to the Virgin Islands for Barry’s 70th birthday. While there, they renewed their wedding vows.
Barry and Cheryl Lukatch
The disease afflicts them both. Cheryl is still cognizant of what is happening and upset, she says, when she can’t grasp her husband’s gentle directions. “The hardest thing for me is I know how frustrating it is for Barry to try to do things for me, and I can’t get it,” she says. Barry absorbs her household duties, manages her daily routines, figures out how to minimize her stress, and faces, daily, the slow erosion of his wife’s mind. She’d once partnered with him in business ventures. She wrote a book, a murder mystery.
“The hard part about this disease is it’s not constant,” Barry says. “There’s a deterioration process that is consistent … but it’s not linear. It’s up and down and jagged. You may observe something today, and it’s not there tomorrow.”
Behind thousands of other doors in hundreds of other Southwest Florida neighborhoods, similar stories are playing out.
Southwest Florida is one of the nation’s hardest-hit regions for Alzheimer’s disease. Here, 1 in 33 adults have the disease, compared to 1 in 58 nationally, according to the Alzheimer’s Association—Florida Gulf Coast chapter, which covers 17 counties from Sarasota to Glades to Collier. Thirty percent of Lee and Collier County residents are 65 or older. Age remains the greatest risk factor.
Alzheimer’s is expected to ravage our gray-haired state. Florida’s current caseload is an estimated 500,000. That’s expected to jump to 720,000—44 percent—by 2025. Florida spends $20 billion a year on Alzheimer’s-related care, a sizable amount, though local families trying to get state aid will say it’s not nearly enough.
Southwest Florida is bracing for the disease on multiple fronts. In some ways, it is ahead of many other places. One Naples resident with Alzheimer’s, Dr. David Kramer, says he and his wife relocated here in part because of the tremendous support and education provided by the local Alzheimer’s Support Network and other nonprofit organizations.
The region offers an abundance of home health agencies; a booming network of nursing, assisted living and memory care facilities; a state-designated memory clinic run by Lee Memorial Health System; and nonprofit health and social service providers that offer much-needed respite, day centers and in-home care. Although it’s not an academic hub, there is a growing number of clinical trials underway at private practices, advancing the understanding of a disease that has perplexed researchers and giving residents access to experimental medicines when there is no other cure. One lawmaker, Florida Rep. Matt Hudson, a Naples Republican, is pushing to put Alzheimer’s at the forefront of his colleagues’ minds—and succeeding.
But there are problems, too: In spite of nonprofits’ efforts to reach them, countless caregivers—especially minorities—are alone in their struggle to shoulder a disease that ravages families physically, emotionally and financially. Outside of dementia-related organizations, community understanding of Alzheimer’s remains low, and patients and caregivers over time find themselves erased from the lives of their friends, co-workers, churches. The cost of care drains savings. Qualifying for state help is difficult. Once someone does qualify, finding long-term care facilities that accept Medicaid can be impossible.
“We need to take that stigma away. This is coming,” says Mary Freyre, a registered nurse and health education specialist at the Alvin A. Dubin Alzheimer’s Resource Center in Fort Myers.
Come and meet the people who are trying to do that.
There’d been signs for years, though at first only he recognized them—and then brushed them off as the inevitability of aging. But over time, Ross Longmire’s mental slips became apparent: the repeated questions to his wife, Minnie; the growing inability to complete his woodworking projects; the confusion he suffered on a family vacation that left everyone wondering what was wrong.
Longmire, 79, a Naples resident, was diagnosed with mild cognitive impairment (MCI) a year ago this month, a condition that affects memory, thinking and language—and for many, a precursor to Alzheimer’s disease. There is no cure. So, Longmire is doing what he can to keep it at bay—exercising, maintaining a social life, reading—and driving to the Neuropsychiatric Research Center of Southwest Florida in Fort Myers twice a month to receive infusions of an experimental drug that he hopes will help him—or at least further the cause.
“I might not get any benefit from this, but someone might,” Longmire says.
Ross and Minnie Longmire
The center’s staff, led by psychiatrist Dr. Frederick Schaerf, is abuzz with excitement these days—a welcome mood in a quest plagued by setbacks. The last new drug to treat Alzheimer’s was approved in 2003—12 years ago, practically an aeon for a biotech industry that is pumping out treatments for global killers like cancer, heart disease and diabetes. But for Alzheimer’s, just five medications have been approved. None of them halt or reverse the disease.
In 2012, a breakthrough: the approval of a radioactive tracer molecule that binds with one of Alzheimer’s hallmarks, beta-amyloid plaque, and lights up in a PET scan. Diagnosing Alzheimer’s, even now, is an imperfect science, but the new imaging technique allows doctors to track the accumulation of beta-amyloid and opens the door to drug studies like the one in which Longmire participates. Schaerf was among the researchers participating in the amyloid imaging studies and is now among those trying to find a tracer that binds with tau, another protein implicated in the killing of neurons.
Then, headline news: Last March, the Massachusetts biotech firm Biogen released the results of a study of its drug aducanumab. It was a small Phase 1 study, just 166 people, but it appeared the drug had accomplished what no other had safely done before—remove excess amyloid plaques from the brains of its study subjects, slowing their cognitive losses. Related antibodies had failed—or worse, caused deadly encephalitis.
“It rocked the world,” Schaerf says. His was among the Biogen initial study sites and now he’s working to recruit patients to join an 18-month, Phase 3 study examining a bigger group of patients at 150 locations worldwide. Biogen offered evidence of another key theory: That these antibodies would work best if administered to patients in the early disease stages. Other companies, such as Eli Lilly, are now reconsidering drugs that failed in late-stage patients.
“We’re really at a pivotal point in this disease that has had such a tremendous effect on our society,” Schaerf says.
Dr. Frederick Schaerf
Just weeks after the Biogen announcement, the Mayo Clinic released a major study implicating tau, another protein, as the disease’s originator. That’s one reason some area experts offer more tepid assessments of the state of Alzheimer’s.
“I think we’re still babes in the wood on this, and it will take a little time to work out,” says Dr. William Justiz of Collier Neurologic Specialists, who also conducts clinical trials.
Justiz wonders if the answer lies somewhere in between tau and amyloid—or in something else entirely.
“I don’t think we fully understand the pathogenesis of the disease just yet,” Justiz says. “What I think is needed right now is more basic research, basic science. We need really smart people sitting there (asking), ‘Is beta-amyloid really the beginning, the middle and the end of the story, or is tau the beginning, the middle and the end of the story, or is there something else? Is there a third protein? Is there a pathway? What’s going on here?’”
One trial he’s involved with examines the process by which amyloid protein—a naturally occurring cellular structure—goes awry and turns into beta-amyloid plaque. That trial looks at whether blocking a certain enzyme will prevent that from happening.
“Give us time,” he says, referencing the many research efforts underway. “We’ll figure it out.”
Dr. David Kramer’s Facebook page, “Living Well with Alzheimer’s,” is a celebration of positivity: pictures of him and his wife of 19 years, Tiffany, on a cruise, at the beach, in the woods. They live in Naples, near Vanderbilt Beach, and love early morning walks, bike rides through the neighborhood and trips for ice cream. Especially Häagen-Dazs. Chocolate, please.
Kramer, who goes by “Dave,” is as affable in person as he is online. He is an emergency medicine physician, forced into retirement at age 56 when Alzheimer’s took hold. His father had had it, too, though his disease didn’t show up until much later. Kramer and his wife took care of him. They know what’s coming.
But it’s not here yet, and that’s what the couple is focusing on.
In the absence of a cure, people like the Kramers and the Lukatches say they are focusing on living with the disease. For them, that means everything from heartfelt and difficult talks about the future, to determining safety precautions, to sharing their perspectives with others (Dave Kramer posts videos in which he discusses his coping strategies)—and wringing the most out of every day.
“We try to laugh at it,” Dave Kramer says. “There’s not a damn thing I can do about it.”
He highlights instead the “perks,” like the sense of experiencing things for the first time: his wife’s “new” dress, the crisp skin of a rotisserie chicken—tried for the “first” time even if it were the 100th time.
“Don’t get me wrong,” he quickly adds. “I have my down times.”
Tiffany focuses on lesisurely hours spent with her physician husband who’d worked every major holiday since they’d met nearly two decades ago in a hospital cafeteria.
It is she who will bear the brunt of the illness.
“It’s hard when everything gets put on your shoulders,” she says, describing her steady accumulation of responsibilities. “For me, that’s the worst part. He worries about me having to get him dressed some day and things like that, but for me, it’s that friendship that’s the hardest part.”
On his page, Kramer urges others to stop wasting time and stop hiding. “There are too many people in denial, so many absorbed in their misery. It’s really sad. It’s unfortunate,” he says. “I don’t see any reason why I should be embarrassed about having the disease. Some people have diabetes. Me? I have Alzheimer’s.”
But just as he is affirming, so, too, is he realistic. Kramer reads and comments on reports about Alzheimer’s in medical journals and the mainstream press. He is dismayed by those who peddle unproven “treatments” and drive false hopes. He rebukes splashy coverage of preliminary drug trials that he believes is driven by Big Pharma and its allies.
Dave and Tiffany Kramer
Kramer has no illusions.
“How open do you want us to be?” he asks.
“I don’t want to be a burden on anyone,” he says, the words tumbling out. He wishes to end his life before the inevitable disintegration of mind and body. In the absence of a cure, Kramer will lose his thoughts, his speech, his ability to walk, eat, use the bathroom. “A later-stage patient with dementia is not human anymore in my view of what makes a person a human being. I don’t wish that on anyone, and I certainly don’t want my family members to have to see that.”
Tiffany fidgets. This is not easy, though she has accepted her husband’s decision. For now, she pushes aside such thoughts and focuses on cultivating the relationship she and Dave have with each other and their two children, ages 17 and 21.
“Yes, we are going to get cheated out of some time, but why focus on that?” she says.
“We look at this the way you had to look at AIDS 20 years ago. When AIDS first came out, it was a death sentence. That’s the way people look at Alzheimer’s disease,” says Anne Petrin, a nurse practitioner specializing in dementia at Lee Memorial’s Memory Clinic.
The mindset needs to change, say Petrin and her colleague Dr. Tanja Mani, a neuropsychologist.
“We try to empower people and their families to view this as something they can actively try to slow the process down—that it’s not hopeless and you should not just sit in a corner and not try these things,” Mani says.
Growing medical evidence suggests there are things you can do once diagnosed—and, more importantly, in the decades before Alzheimer’s becomes a risk. The Alzheimer’s Association is rolling out a new program, Healthy Habits for a Healthier You, hoping to curtail the disease through lifestyle modification while researchers search for pharmaceutical answers.
Prevention includes all of the things doctors have found to be beneficial for the heart: a healthy diet (the Mediterranean diet and its variations are most frequently cited); exercise; sleep; control of cholesterol, blood pressure, glucose. And, increasingly, researchers note, social interaction plays a tremendous role—the reason the Kramers keep busy in worlds both virtual and real, the Longmires commit to date nights, the Lukatches religiously attend sessions at the Dubin Resource Center.
Learning new things helps keep the mind sharp, too, area doctors say. They are not talking about endless crossword puzzles or expensive memory technologies but rather learning new skills—a foreign language, a musical instrument.
“I tell my patients to learn a foreign language and, if you have the means, go to that country. Or I joke with them and say, ‘Learn Spanish and go to Miami. Go to Calle Ocho and have a nice Cuban sandwich and try to order it in Spanish,’” Justiz says.
Everyone is espousing the benefits of music, enthralled by the new documentary Alive Inside that shows even advanced-stage patients react to melodies. Music, the film explains, touches more parts of the brain than any other stimuli. Organizations such as Moorings Park, a retirement community in Naples, are investing in headphones and MP3 players for its new memory care unit; day centers like the one Senior Friendship Centers runs in Fort Myers play tunes from their clients’ youths.
The mounting science of behavioral change is one reason doctors and social service groups are pushing the public to get tested early if they suspect something is wrong. Buy as much time as possible, they say, to correct health problems that exacerbate mental decline; to organize finances and legal affairs; to make long-term care decisions; to decide how to live when life is suddenly finite; and, if you are inclined, to participate in clinical trials that increasingly seek early-stage patients.
The lifestyle message is an important one, but area experts say there’s an important caveat lest caregivers and patients sink into self-blame and guilt: “Alzheimer’s was discovered in 1906, which is before processed foods, before high-fructose corn syrup, it was before GMOs and all of those things,” says Dubin Resource Center Executive Director Jan Kerlin.
You can do everything right and still get Alzheimer’s.
The biggest fight against Alzheimer’s disease takes place not in the lab, but in living rooms across America.
Family caregivers are the nation’s unseen and unpaid health care workforce, offering some 17.9 billion hours of care last year valued at $217.7 billion, according to the Alzheimer’s Association.
Dolores Bertolini of Cape Coral wants to put her hands on their shoulders, look them in the eyes, give them a vigorous shake and a stern warning: “There is no comfort in this disease. You need every bit of help you can possibly get. I drove myself to the point where I was exhausted mentally and physically. You cannot do this by yourself. I do not care how good you are, how capable you are. This disease will take you down.”
Her husband, Aldo, died four years ago. Bertolini, who is 81 and a former Cape Coral councilwoman, says she’s still recovering from the physical, mental and emotional toll the disease took on her. She cared for Aldo for 11 years.
In the beginning, he suffered memory lapses—uncomfortable but tolerable. As it progressed, he took to wandering. Once, he toppled into their backyard pool. Another time, when a constituent distracted Dolores before a community parade, he went to examine a fire truck a few hundred yards away. She found him an hour and a half later.
“You can never get distracted. You can never take your eyes off of them,” she says. Guilt still lingers in her voice.
Aldo never grew aggressive, but he could at times be cruel—a stark reversal of a jovial man who loved his childhood sweetheart. Dolores remembers once cooking a favorite Italian dish and Aldo barking at her, “What are you doing over there? It stinks.” Angry, Dolores retorted, “Go ahead and cook it yourself.” A mistake, she instantly knew. He plucked an egg from the refrigerator and ate it raw.
What troubles her most is the lack of frank discussions and hard realities.
“Nobody told me how bad the end is,” Bertolini says. “There are so many things a caregiver goes through, and then at the end, I wasn’t prepared for him starving to death. They can’t eat anymore. They can’t digest anymore. … Why didn’t anyone tell me?”
If she had to do it again, she would have enlisted help sooner. She did eventually tap into adult day programs—and spent the first six months of the service sitting at home, berating herself for turning over her husband to someone else’s care.
Today, Bertolini counsels other caregivers on behalf of the Dubin Resource Center, hoping to keep them from making her same mistakes. She urges them to seek help, to connect with support groups, to know what to expect—and plan for it—and to stay connected with friends, family and faith communities—or others living with the disease, who can relate to the burden of Alzheimer’s in ways no outsider can.
“I am trying to save the person we lost,” she says of caregivers. “The living are left behind.”
Nonprofits such as the Alzheimer’s Support Network in Collier County and the Alvin A. Dubin Alzheimer’s Resource Center in Lee County offer the kind of help Bertolini preaches. They host endless support groups, ask-the-experts panels, caregiver trainings and counseling sessions to help people navigate the world of Alzheimer’s. Freyre, the Dubin Resource Center’s health education specialist, is working with faith-based organizations to create dementia-friendly houses of worship; Support Network Executive Director Clarke Pollard just brought in national dementia expert Teepa Snow to instruct the community on how to communicate with someone who is losing the ability to express ideas, to remember, to reason.
Lee and Collier counties are home to 3,080 skilled nursing beds; 3,685 assisted living beds; 96 home health agencies (two-thirds of which accept Medicaid or Medicare); 72 homemaker and companion services; and 11 adult day facilities—one area that could use some bulking up, according to local Alzheimer’s advocates.
More than half of the 40 major retirement communities in Lee and Collier counties have memory care beds, and new dementia programs at retirement communities including Moorings Park and Terracina Grand in Naples have sprung up in recent months. These are not the drab institutional homes of yesteryear, but offer instead resort-style suites with professional caregivers who try to make life as affirming as possible.
But there’s a catch.
“The greatest challenge and the dirty secret in Naples is money,” Pollard says.
Memory care communities can cost between $4,000 and $7,000 per month, he says. The residences may take long-term care insurance—if patients carry it and it doesn’t have exceptions and coverage limits that keep such placement out of reach.
Less expensive options include home health (roughly $20 an hour) and adult day programs (about $10 an hour). On a fixed income, those costs can decimate a retiree’s savings. Bertolini spent her entire council paycheck on her husband’s care and used up a $40,000 annuity that was supposed to have sustained her retirement. The day center her husband attended cost $9 an hour. “If you go four hours a day, do the math,” she says.
There are state and federal funds, such as those through Medicaid or Florida’s Alzheimer’s Disease Initiative, that can help. Seniors can call the Area Agency on Aging to try to get on a waitlist for services—including long-term care, in-home services, respite and medical supplies.
The state boosted resources this year; still, there is always a waiting list. In late July, nearly 7,800 people in a seven-county area including Lee and Collier were waiting for services. Those with the highest need, as determined by state-issued assessments, get money first, as it becomes available.
Samira Beckwith, CEO of Hope HealthCare Services, believes there are more ways to piece together services than people think. Her organization, best known for its hospice care, runs a nursing home diversion program that offers both day programs and in-home assistance for dementia patients. Senior Friendship Centers, another nonprofit, offers services to the region’s neediest seniors. Arden Courts, a private dementia care community, will accept state funds for emergency respite services.
But the care network is by no means perfect. Individual Floridians can’t make more than $2,199 a month with $2,000 in liquid assets to qualify for Medicaid. And then, in what many area experts consider to be bureaucratic nonsense, Medicaid will pay the full cost of a skilled nursing facility—some $8,000 or more a month—but won’t cover much more than $1,200 toward memory care or assisted living, Pollard says.
“We have a bunch of people going into skilled nursing who don’t need to be there,” he says.
And if skilled nursing is the only option and Medicaid picks you up, good luck finding a bed nearby, says Len Strickler, whose wife has a form of dementia similar to Alzheimer’s. He had to send her to Clewiston.
“The system as a whole is really broken,” he says. “We don’t know what to do in this country with these people.”
The state is trying, says state Rep. Matt Hudson, who has been steering efforts to make Alzheimer’s a legislative priority. He spearheaded the formation of a Purple Ribbon Task Force in 2012, which came out with a 289-page report and 31 recommendations. The 2014 legislature addressed three key pieces: It created new standards for the state’s memory clinics; created a special-needs database for emergencies; and set up the state’s first designated research fund for Alzheimer’s and related dementias. It was named in honor of Hudson’s grandparents, Ed and Ethel Moore, who died from the disease.
This fall, Hudson intends to set up a private screening of country music legend Glen Campbell’s documentary I’ll Be Me, which follows him on his farewell concert tour given as he battles Alzheimer’s.
“We are in a better place than we were,” Hudson says of the state. “But we have a ways to go.”