Alzheimer's disease takes a heavy toll — Part 3
Alzheimer’s caregivers, usually elderly spouses or working adult children, face increased risk of physical and mental health problems such as anxiety, depression and heart problems. Stressed caregivers are 63 percent more likely to die within four years, compared to non-caregivers.
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 third of three parts. Read earlier installments here:
Stress obvious in caregivers
Will Needleman gets misty-eyed as he thinks back to that day nearly seven decades ago when he was introduced to the stunning brunette strolling with her friends on Miami Beach.
He turns to this woman who grabbed his heart so many years ago, now his wife of 65 years sitting next to him, and smiles. Needleman, 93, has no trouble remembering the date he married Mildred: Dec. 20, 1949.
The loving sentiment meets a blank stare. "Uh huh," Mildred says, reflexively smiling. Will Needleman sighs. She has no idea what he's talking about.
Mildred, who was diagnosed with Alzheimer's disease seven years ago, often doesn't recognize Will, or confuses him with her deceased mother and father, a neighbor, a friend, or someone else from long ago.
Dementia has devoured a lifetime of her memories. But it's a cruelty felt most deeply by those loved ones left behind — primarily Will and their daughter, Marsha — caring for her 24 hours a day, seven days a week in their Estero home.
"It's devastating more on us than on her. She doesn't realize what's going on," Will Needleman said. "I cry a lot. I get angry a lot. And it's coming to the point now that it's too much for my daughter and myself to handle."
Weighed down by the daily grind of caring for a wife, husband or parent slowly slipping away takes a heavy toll on family, experts say.
The most common duties are those related to everyday living: getting them out of bed, feeding them, helping them dress, and the unpleasant work of helping them use the toilet or managing their incontinence.
Other duties are unique to the disease, such as preventing someone with Alzheimer's from wandering from the home or trying to calm them if their dementia makes them prone to violent behavior.
Many caregivers take on the burden because they say they would feel guilty about sending a spouse or parent to a nursing home. Other simply cannot afford to do so, even when these loved ones require constant supervision and assistance in daily living.
"Many people in the early stages — really, most of the families we work with — they would prefer for their loved ones to stay home for as long as possible," said Jessica MacDonald, a social worker with the Fort Myers-based Alvin A. Dubin Alzheimer's Resource Center. "That's kind of the universal desire."
Report cites stress
But that desire can come at a steep cost.
An Alzheimer's Association report last year highlighted the stresses placed on caregivers. Among its highlights:
- U.S. families provided 17.7 billion hours of such informal care in 2013, time valued at an estimated $220 billion.
- More than 1 million Floridians provided nearly 1.2 billion hours of care worth nearly $15 billion.
- Almost 60 percent of family caregivers report "high" or "very high" levels of emotional stress.
- Nationally, family caregivers of dementia patients required $9.3 billion in extra Medicare related to their daily stresses. Floridians required $954 million in extra medical care, the fourth highest rate in the nation.
According to the preliminary results of a survey last year by the Florida Department of Elder Affairs, 46 percent of caregivers were taking care of parents. About 40 percent were caring for spouses.
They provided an average 68 hours of care a week, the survey found. One in five said they were doing so 24 hours a day.
Good times, bad times
Kate Pre-Genzer, 81, provides most of the care for her 86-year-old husband, Joe, in their two-bedroom south Fort Myers condominium.
Joe was diagnosed with Alzheimer's several years ago, but medication has seemingly slowed its progression and kept him fairly lucid. Still, he has trouble walking unaided and Kate said she must keep watch over him constantly.
She said she tries not let the stress of caring for her husband get the better of her. The antidepressant medication helps, she said.
"I'm just like Joe. I have good days and bad days," she said. "Some days I cry. Some days I have good days too."
Kate expects they will soon need outside help or expensive long-term care. The couple does not live in poverty, but they don't spend money needlessly. Small creature comfort purchases, such as a replacement rug for one recently soiled in an accident, are avoided.
"I'm afraid to spend money for things that come up, because we may need to have long-term care," she said. "We don't know how long we'll live, and we don't want to outlive our money."
For others, it's a matter of love and a sense of responsibility.
Saul VanderWoude, of south Fort Myers, takes a stoic view of his wife's illness. He considers it a responsibility to take care of her, and not put her in a nursing home. Doreen VanderWoude, 71, was diagnosed with Alzheimer's nearly six years ago.
But his stress has not gone unnoticed. When Doreen was getting treatment at HealthPark Medical Center in south Fort Myers last summer, a hospital staffer noted that it seemed Saul was "becoming a bit burned out" from his 24/7 caregiving, records show.
"You sign on for the good times, you better be there for the not-so-good times. That's life," he said. "Anybody can be there for the good times."
Help isn’t free
Of course, caregivers don't have to go it alone. Home health care and adult day care services are available to provide some respite for family caregivers.
Home assistance averages about $20 per hour in Florida, according to a 2012 MetLife market survey of U.S. providers of long-term care. The average daily (full-day) cost of adult day care is about $60 in Florida, according to that report.
Cost remains a big barrier for some. Most of the region's seniors are neither wealthy enough to fully pay for all needed nor impoverished enough for the Medicaid program. Few have long-term care insurance, local experts say.
"They're kind of in that weird, gray area. They have some money, but they certainly don't have enough money where they could continually pay for care and yet still maintain their lifestyles and survive" said MacDonald, of the Dubin Alzheimer's Resource Center in Fort Myers. "You see a lot of people in that range."
Day care centers, which generally cost $8 or $9 per hour, are often the best option for cash-strapped seniors needing help. But, with 14 such programs in Lee, Collier and Charlotte counties, there are likely too few of them, elder care advocates say.
Debbie Beavers, who operates the 40-space Choices in Living adult day care center in Cape Coral, said many caregiver spouses are also often reluctant to seek out such programs, until some sort of medical crisis.
"It's because of the vows they take — for better or worse, in sickness and in health — they don't want to reach out," Beavers said. "Everyone thinks they can do it themselves. Then their health starts to get affected."
Overwhelming responsibility
But even with help, caregivers find they are in many ways still on their own.
Some complain that friends stop visiting after hearing of an Alzheimer's diagnosis in the home. Others find little time for socializing as caregiving becomes an around-the-clock job. Even a caregiver's children, many of whom live in faraway states, often don't want to be bothered.
"I lost a lot of friends because of this — so-called friends. That's the first thing that I want to tell people that are going to have to experience this," Needleman said. "As soon as they know a member of the family has Alzheimer's they disappear. They don't want to have any part of it."
Some spouses find themselves overwhelmed with the responsibility. Even the smallest problems can seem like calamities, especially when you're used to having a partner to help you solve them.
A leaky toilet becomes an unsolvable disaster. Spending hours on the phone with the cable company — a blood-boiling frustration that makes you want to smash your television, said Kate Pre-Genzer.
"It's just something, all the time," she said. "I have to do everything. I'm so used to having someone to lean on."
THE NUMBERS
46%: Caregivers who are sons and daughters
40%: Caregivers who are spouses
60%: Caregivers who report high emotional stress
$954 million: Amount Floridians required in extra medical care, the fourth highest rate in the nation.
$9.3 billion: Amount family caregivers of dementia patients required in extra Medicare related to their daily stresses nationally.
ABOUT THE SERIES
The News-Press reporter Frank Gluck, as part of a National Health Journalism Fellowship with the USC Annenberg School for Communication and Journalism, spent the past five months speaking to Alzheimer's experts and Southwest Florida families coping with the disease.
The News-Press also obtained up to 10 years of public records from state agencies, nursing homes, clinics and hospitals to find how much the disease and related medical problems are costing patients, this region's health centers and taxpayer-supported insurance programs.
This project is the start of a continuing News-Press effort to tell the stories of Alzheimer's in Florida and how the state is preparing for what some experts believe will be the nation's next great health care crisis.
Photo credit: Amanda Inscore/The News-Press