Alzheimer's strains finances, medical resources — Part 2
Alzheimer's disease, the most common form of dementia, is hitting older communities such as Southwest Florida hard, overwhelming retirement savings and loading more costs onto the region's already strained medical system, a five-month News-Press investigation found.
Frank Gluck reported this story, originally published by The News-Press in Fort Myers, Florida, while participating in the 2014 National Health Journalism Fellowship, a program of USC’s Annenberg School for Communication and Journalism. This is the second of three parts. Read Part 1 here.
Florence Muchnick, who survived two husbands and retired a millionaire, now shares a single room with a stranger in a south Fort Myers nursing home.
It's space enough for two twin-sized beds, the cloth curtain separating them, a television and a small shared wardrobe. Muchnick's family believes she's well-cared-for. But it's a far cry from the luxury condominiums to which the 86-year-old had long been accustomed.
"There's nothing fancy about it. I almost consider it like a step above being out on the street, other than it's clean," said Muchnick's daughter, An Bacheler, who lives in Naples. "It would not be a place I really would have selected for my mother. But I feel like I'm stuck, she's stuck there."
Alzheimer's disease, the most common form of dementia, is hitting older communities such as Southwest Florida hard, overwhelming retirement savings and loading more costs onto the region's already strained medical system, a five-month News-Press investigation has found.
And population experts predict this is just the beginning. Barring a medical breakthrough, the nation — particularly states such as Florida — will see an explosion in dementia cases, driven largely by an aging baby boom generation and medical advances keeping people alive longer.
Today, an estimated 480,000 Floridians, including roughly 55,000 in Southwest Florida, have some form of it. The state's dementia population is expected to jump to 720,000 by 2025 with only California having more U.S. cases, according to the national Alzheimer's Association.
The disease will affect the old, who will have to endure it, and the younger generations, who will be forced to pay for that care. U.S. spending to treat and house Alzheimer's patients was an estimated $214 billion last year, more than the cost of treating heart disease or cancer. Taxpayer-supported Medicare and Medicaid accounted for 70 percent of that spending.
Dementia patients over the age of 65 are three times as likely to be hospitalized as seniors without the disease. They also spend more on medical and long-term care, and are nearly three times as likely to need taxpayer-supported Medicaid coverage.
Meanwhile, research funding for Alzheimer's is less than the amounts spent on cancer, heart disease or HIV.
Dr. Fred Schaerf, a Fort Myers psychiatrist, Alzheimer's researcher and one of Florida's leading authorities on the disease, has been sounding the alarm for years. He said he worries not enough time and money are spent on finding a cure for Alzheimer's.
"The disease is going to bankrupt the United States," Schaerf said. "Florida, especially Southwest Florida, is not ready for this in so many ways."
Alzheimer's in Southwest Florida
The News-Press interviewed families in this region coping with the disease to find out how they are navigating the complicated, and costly, world of Alzheimer's treatment and long-term care.
It also reviewed 10 years of public records from state agencies, nursing homes, clinics and hospitals to determine how much the disease is already straining medical resources and families' savings. Records for Southwest Florida include information from Lee, Collier, Charlotte, Desoto, Glades, Hardee, Hendry and Sarasota counties.
Some of the findings:
- Medicaid spending for Alzheimer's-related care — primarily to pay for nursing home stays — has grown steadily in Southwest Florida to about $41.5 million in 2013, or about $40,000 per patient, according to Florida Agency for Healthcare Administration records. Statewide, Medicaid spends more than $517 million a year for these services, or about $32,000 per beneficiary. The Florida Agency for Health Care Administration did not comment when asked to explain such differences in cost.
- The waiting list for caregiver assistance provided by state's Alzheimer's Disease Initiative had a waiting list in 2013 of about 2,000 people, according to state elder care advocates. (The state provided $4 million in additional ADI funding this year, which could reduce that number.)
- Charges for Alzheimer's-related medical treatment at Southwest Florida's hospitals and clinics totaled more than $126 million in 2013, up from $55.5 million a decade ago, according to billing records collected by the state. The region's 10-year price tag for all such care: $981 million.
- The public Lee Memorial Health System, which operates nearly 95 percent of the hospital beds in Lee County, hospitalized an average 1,200 Alzheimer's patients a year between 2007 and 2013 for a variety of medical reasons. The average bill: nearly $30,000 per patient. A typical hospital stay for all health system patients averages $28,639.
- The average daily cost of nursing home care in Southwest Florida is $250, or $91,250 a year, without insurance. Most of these facilities allocate some beds to Medicaid patients and have special dementia-care units. But not all are locked for patient safety, and the waits to get in may take many months. Medicare rates a quarter of these 71 facilities as "below average" or "much below average" for quality and care.
Spiraling expenses
Families such as the Muchnicks are bearing much of the expense, though no one could have foreseen it for this family.
Muchnick had been healthy and active — she and her second husband were avid travelers — well into her 70s. Her family had also accumulated money, property and investments worth a little over $1 million, according to her daughter, Bacheler.
But age finally caught up with her, causing mobility issues and some memory loss. Bacheler, worried her mother was unable to take care of herself, convinced her to move into assisted living.
She spent six years in those homes as a private-pay patient. The monthly bill: roughly $4,500. Medicare does not cover such costs. Another $1,000 went to prescription drugs, Bacheler said.
Meanwhile, the Great Recession hit. The family lost more than $100,000 when the stock market collapsed in 2008 and another fortune on soured real estate deals. Muchnick suffered a crippling fall, forcing her into nursing home care. She was diagnosed with advanced dementia in late 2013.
She now lives in the Alzheimer's unit at Signature Healthcare, just off the campus of Florida SouthWestern State College. The nursing home, whose rooms have a $215 daily rate, is rated as "below average" by the Medicare system.
"Money, it was just like going right down the tube," Bacheler said. "I'm sure she never anticipated being in this situation. We all thought she'd have enough money to live for the rest of her life."
Medicare Numbers
Alzheimer's patients live an average of four to eight years after they are diagnosed. Aside from the potentially high cost of daily supervision over those years, dementia patients require far more medical attention than most seniors.
Medicare spends, on average, $10,748 for hospitalized dementia patients, compared to $4,321 for non-dementia patients, according to the Alzheimer's Association.
Fainting, falls and heart disease are among the top reasons.
Known Alzheimer's patients admitted to Lee Memorial Health System's four acute-care hospitals have similarly high rates of injuries and chronic disease among those identified with Alzheimer's, records show. But, between 2007 and 2013, those costs to Medicare have been lower than that national figure: About $7,590.
The health system could not explain the lower costs, or the fact that the number of such patient visits have remained at roughly 1,500 a year for the past six years. Though, until recently, it did not routinely screen seniors for the disease.
"There's not a tool you can use in the emergency room that says you have Alzheimer's, unless it's stated to you," said Lisa Sgarlata, chief administrative officer of Lee Memorial Hospital in Fort Myers and a former nurse. "Usually, when they come in, they come in with a chief complaint of something physical."
Difficult cases
There are no acute-care medical units for Alzheimer's. Most hospitals, including those in Southwest Florida, are not specifically designed to deal with dementia patients, who may try to wander off or be otherwise combative. Often they are violent.
Alzheimer's patient Doreen VanderWoude pushed a nursing assistant last year at HealthPark Medical Center, where she was recovering from a fall she suffered that summer, according to her family. Her family believes the violent outburst was the result of a hospital volunteer blowing an alarm whistle when VanderWoude tried to leave her room. Loud noises agitate the 71-year-old, they said.
"The more you use the whistle, the more she screams," said her husband and primary caregiver, Saul. He said he has no bad feelings about the hospital but wishes staffers were better-trained. "These nurses apparently have not trained sufficiently to deal with dementia patients at the hospitals. You handle dementia patients differently. They are different."
Lee Memorial officials say whistles are used as the primary alarm-sounding device by "sitters," the volunteers trained to supervise such patients. They need to be loud, so doctors and nurses can be alerted to emergencies, hospital staff say.
VanderWoude was later put in restraints for several days before she was sent for treatment at the nearby Park Royal psychiatric hospital under the state's Baker Act, according to medical records provided by her family.
Health system officials say such situations are "very, very rare."
"These situations are handled with considerable sensitivity by our staff," health system spokeswoman Mary Briggs said later in an email. "We recognize the difficulties faced by patients living with Alzheimer's and the burdens placed on their caregivers. The progression of this devastating, degenerative disease sometimes leads to emotionally taxing situations, to which we must respond with compassion, kindness and care."
Drugs and behavior
Park Royal Hospital, the county's only inpatient psychiatric health center, has a 25-bed geriatric unit that commonly sees Alzheimer's patients suffering from depression, psychosis, agitation and hallucinations.
Once underlying medical conditions, such as certain infections, are ruled out, doctors generally prescribe one of two types of medications: benzodiazapines, such as Xanax, or powerful anti-psychotic drugs, said Dr. Ivan Mazzorana, Park Royal's chief medical officer.
Neither is a great option. Both increase the chances of falls or further cognitive decline. Anti-psychotics also increase the chance a patient will suffer a stroke. The hospital takes a "go-slow" approach to any such drugs, Mazzorana said.
Behavior problems can also complicate housing arrangements for patients who had come from nursing homes or assisted-living facilities. Often those facilities resist taking those patients back, considering them too big of a risk, he said. Regulations require nursing homes to take back long-term care Medicaid patients or face fines.
"I just had to discharge a lady to a Broward County facility," Mazzorana said. "After 56 years of marriage, her husband was afraid for his life. Begrudgingly, he agreed she had to be placed. And, begrudgingly, it had to be out of the county."
Not enough bedsEven when behavior is not an issue, it can be hard to place seniors close to family.
Available beds for low-income patients on Medicaid are often in short supply, according to those who help Southwest Florida families place loved ones in nursing homes. Medicare does not pay for nursing home care for dementia patients.
"Sometimes they sit in our buildings for days, weeks, or even a month or two, while we're finding a facility that meets their needs," said Heidi Shoriak, director of care management at Lee Memorial Hospital. "That's very frustrating and hard on families."
Of course, it's a lot easier to find a good spot if you can pay cash.
Stuart Hodes, a retired oil company executive, placed his 91-year-old wife, Helen, in an Alzheimer's-care unit at the Gulf Coast Village senior community in Cape Coral. He lives in a nearby independent living wing of the residential community and can visit her daily.
The monthly cost: $13,000, plus another $6,000 a month for two private caregivers who watch over Helen in the unit.
"Unless we get more money into research to find out what the hell causes this — being able to avoid it or minimize it — the world will go broke," Hodes said. "How many people could afford what I'm affording now?"
Taking Action
Despite the challenges and the looming costs, the state and Southwest Florida are not completely unprepared.
Florida launched its Alzheimer's Disease Initiative nearly 30 years ago, an effort that led to 15 memory care clinics, a series of adult day supervision programs and other dementia-related support services. Lee Memorial Health System operates one of those clinics in south Fort Myers. It provided 435 diagnostic evaluations in 2013, including 145 free dementia screenings, according to state records.
A state task force created in 2012 called for more funding for research and efforts to bolster the number of care facilities for people with dementia. This helped lead to legislation signed by Gov. Rick Scott last year that included $3 million in new funding for Alzheimer's research and regulations aimed at improving screenings.
In a report last year, Florida Tax Watch warned of "Florida's Looming Alzheimer's Crisis" and called state research funding a "worthwhile, high-return investment."
Lee Memorial Hospital started a pilot program in August to at least identify undiagnosed dementia patients through a list of screening questions when they show up at its emergency department near downtown Fort Myers.
The program will eventually expand to Lee Memorial Health System's three other acute-care hospitals in the Fort Myers area, said Sgarlata at Lee Memorial Hospital, who designed the program. Screeners also look for other problems that are often not obvious, including substance use, delirium and depression.
Dr. Steve Brown, an elected member of the health system's governing board, said it's a good first step. But Brown said Southwest Florida's hospitals, elder care advocates, researchers and other members of the community should begin a serious of discussions about meeting future Alzheimer's needs.
"We could put this area on the map for quality care, for research, for taking care of our people," Brown said.
Photo credits: Amanda Inscore/The News-Press