Alzheimers on the Rise in Hawai‘i
A wave of graying boomers will change the way we live and age in the Islands. No surprise, we’re finding our own ways of facing the challenge.
“iron lady” winifred ka‘aihue has cared for her mother, her mother-in-law and her husband.
Photos: Diana Kim
Joyce Lani Ka‘aihue was preparing for a client meeting at Bank of Hawai‘i, where she was a vice president, when the phone rang. It was her father, Edwin, who, diagnosed with Alzheimer’s, had stopped calling years ago when he lost touch with numbers. Recently, he’d also stopped making sense, which made the words of the World War II veteran and proud “100-percent Hawaiian” all the more compelling: “Lani, take care of mother. Take care of mother.”
As it turned out, says Ka‘aihue, “those were his last words to me.”
That 1998 phone call prompted Lani to check in on her mother, Edwin’s wife, Winifred Ka‘aihue. Born in Hilo, taken out of school at age 12 to sew work clothes for plantation workers, she’d been rescued at 22, whisked away to Honolulu by dashing Edwin. A waitress at Coco’s, she was legendary for her ability to balance a dozen hot plates stacked on her forearms as she moved around her section.
But, in her 80s, Winifred was juggling the care of her husband, her mother-in-law, who had dementia, and her mother, who, eluding diagnosis, was also “out of her head” much of the time. During the day, Winifred also watched two grandchildren.
When Lani got home from work that day, she took a good look at her mother. “I could see that, if someone didn’t help Mom, she would die first.”
And so Lani Ka‘aihue ended up quitting her job to assist her brother, Allen, who’d moved in to help but had a day job. One by one, the elders passed away, including Edwin Ka‘aihue in 2002, leaving only Winifred, “the iron lady,” with her wits still about her. Oddly, it was Lani who had trouble making the transition. She returned to banking, yet the pace proved too demanding. Another job proved a poor fit; still, her impressive résumé landed her a third job, at a hospital—only this one was too distracting. Her fourth job in three years finally worked out. But, last year, she raised a hand in a meeting, only to find nothing on her mind when called on.
laughter flows when winifred, 88, and her daughter, lani, 63, talk story.
lani is the one having trouble with dates and can’t drive.
“That was the first sign,” says Lani, now 63.
Afterward, “I self-referred to my primary-care physician,” she says. “After the first scan he didn’t seem too terribly worried. But, mentally, I was in a gray area where I was questioning everything. What month is this? I’d write things down I wrote down the day before.”
Further testing confirmed that it was early-onset Alzheimer’s. Given its fast progress, Winifred, “a small Japanese lady with the soul of a tank,” as a smiling Lani calls her, will probably keep her wits longer, and might even outlive, her caregiver daughter.
A cruel twist of fate, Lani’s story is also a foreshadowing of America and Hawai‘i’s coming reckoning with the aging of the baby boomers. The first of 80 million boomers turned 65 a year ago and, along with collecting Social Security and Medicare, are also finding themselves at the forefront of a gray wave.
It’s a wave poised over our age-friendly, long-lived Islands: “In 2030, there will be nearly 400,000 adults age 65 and over in Hawai‘i,” according to James H. Pietsch, law professor and director of the University of Hawai‘i Elder Law Program. “And they will constitute nearly one-fourth of the population,” up from 15.6 percent in 2013.
STILL HONORED: EDWIN KA‘AIHUE, IN HIS U.S. MARINE UNIFORM.
To put it in perspective, that will be almost twice as many old people in the aisles when the weekly Longs sale kicks off—you likely among them, as a caregiver if not a fiercely competitive coupon clipper.
a support group sponsored by the alzheimer’s association offers advice and comfort to seniors and their families.
Photos: Diana Kim
Meanwhile, every 60 seconds, someone in the United States is diagnosed with Alzheimer’s. Currently, there are 5.4 million people 65 and older with the disease, a number projected to rise to 17 million by 2050. Besides Hawai‘i’s 26,000 known cases, there are, as elsewhere, more undiagnosed, says the Alzheimer’s Association, the nation and world’s top information clearinghouse (alz.org).
Also uncounted are people whose dementia hasn’t quite risen to the level of a diagnosis, those whose symptoms could be due to vascular problems, Parkinson’s, bad reactions to medicines, thyroid imbalances, alcoholism, mad cow disease, the normal mental deficits due to aging and so forth. (Alzheimer’s is classified as a disease, and accounts for 60 to 80 percent of dementia cases.)
Daunting as the numbers are now, Alzheimer’s and dementia are on the rise. Hawai‘i has seen a 120 percent jump in Alzheimer’s deaths since 2000. And: “There is no cure,” says Dr. Kore Kai Liow, a clinical professor of neurology and director and founder of the Hawai‘i Pacific Neuroscience Center, which, after six years of existence, recently added to its Kailua campus at Castle Medical Center a second, brand-new facility at St. Francis Medical Center in Liliha.
What troubles researchers and doctors about Alzheimer’s is the gender imbalance: Two-thirds of those with Alzheimer’s are women. At age 65, a woman’s chance of being diagnosed with Alzheimer’s is 17 percent, while, for men, it’s 9 percent, according to the Alzheimer’s Association. At 85, a woman’s risk is 20 percent to a man’s 12 percent. With Alzheimer’s, the body can linger long after the mind is gone, “10 to 20 years,” says Dr. Kamal Masaki, professor and chair of the Department of Geriatric Medicine at the John A. Burns School of Medicine as well as director of research at Kuakini Medical Center.
Early-onset Alzheimer’s is relatively rare, occurring in 5 percent of Alzheimer’s patients. But, “the average time from diagnosis to death is seven years,” according to Dr. Steven Blake, a Maui nutritional biochemist who is conducting clinical trials with Dr. Liow. “Those seven years aren’t pretty.”
Of course, women are also more apt to be caregivers. “They’re the ones who outlive the men, and they’re the ones who get it after the men die,” says Valerie Yontz, faculty specialist in aging and caregiving at the Office of Public Health Studies at the University of Hawai‘i at Mānoa. “Often, there’s no one left to take care of them.”
That is, as Blake said, if they haven’t gone first. “In fact, caregivers often die before the patient.” Indeed, the costs of caregiving extend like ripples. “Alzheimer’s is not a disease of the patient, but a disease of the family,” was the message of Dr. David Reuben of UCLA’s Alzheimer and Dementia Care Program in a 2013 presentation. “Everybody’s in this. Because, if caregivers get burned out, it doesn’t help the patient.”
george’s condition, although undiagnosed, led daughter leslie tyson to seek out a clinical trial.
As in Lani Ka‘aihue’s case, many adult children quit jobs, change occupations or moonlight to help with caregiving and its expenses. The dilemma is particularly sharp in Hawai‘i due to high housing costs that keep children and parents under the same roof for generations: Just when you’ve saved enough to move out and enjoy the hard-won prime of your life, you might be faced with taking care of your parents, even moving back home.
That’s a cost that cannot be calculated. For those that can be, a 2015 analysis by the Alzheimer’s Association puts the care bill (including paid caregivers) at $12 billion by 2020 which, thanks to the bulge in the baby boom, balloons to $328 billion in 2040.
For Leslie Tyson, her mother’s diagnosis of Alzheimer’s washed away the foundations of two independent households run by highly competent women. A virtual business administrative assistant who supplies back-office support from her home, Tyson, 50, worried mostly about her father, George Matsumoto, 72, who seemed to lack motivation after retiring from being a plumber. “Men lose a sense of purpose when they leave their jobs. He was sleeping most of the day, sleeping at the drop of a hat.”
despite her own diagnosis, ellen matsumoto checks in husband george at the hawai‘i pacific neuroscience center.
For years, “Mom did everything; she was the one to hold the family together,” Tyson recalls. “But she always had a tendency to be a little ditzy. Flaky, quirky—that’s Mom.” Ellen Matsumoto, 69, was watching Tyson’s niece and nephew during the day at her sister’s house when “little things started popping up, like missing the exit on H-1 and ending up in Kāne‘ohe.” Tyson laughs. “I could see it happening once, but five times a week?”
Ellen admitted to feeling out of sorts, “like an anxiety attack.” A few more incidents led to a doctor’s visit, a referral to a specialist, testing and a diagnosis.
“Once Mom needed help, everything happened quickly,” says Tyson. “We determined they couldn’t stay on their own, couldn’t drive.” Tyson and her husband, Morris, lived with their daughter in a condominium, but the daughter was heading off to the Mainland for an internship. “We had them come live with us and put their home on the market.”
Cleaning out her parents’ house with the help of her husband, Tyson discovered further evidence of how far back the symptoms of dementia went: “We found cases and cases of Spam. I know, this is Hawai‘i! She was a compulsive shopper, but she wasn’t extravagant—anything on sale at Longs.”
She gives a hearty laugh. “Local style, right? But there’s a line. It was all past the due date by years. She’d been buying and pushing it back in the pantry, buying more and pushing it back.”
ellen and george matsumoto, lani ka‘aihue: their smiles may not be what you think of when it comes to alzheimer’s and dementia, but they’ve made a choice to live fully while they can.
Photos: Diana Kim
Then her daughter’s internship fell through. “She came home and ended up living on the couch. We had only one bathroom. Father had some incontinence issues. We had to schedule bathroom time as early as 4:30 in the morning. It was challenging. A mini-nightmare, actually.”
Tyson joined a support group in Mililani sponsored by the Alzheimer’s Association, attended classes, read up on the disease and talked to a trust attorney, “who walked me through the legal part,” she says. “Fortunately, my mother still had the mental wherewithal to do the paperwork. It was hard enough as it was, but she did already have trust documents that showed me as trustee and gave me her power of attorney.”
Putting both their condo and her parents’ home on the market, Tyson struggled to keep her own business going while she juggled selling the houses, hunting for a new house to buy that could accommodate all of them and taking care of both her parents. In August of 2014, they moved into a new place in Mililani.
Anyone would be forgiven for thinking the day-to-day lives of Lani and Leslie and their families must be somber and edged with dread, but they’d be wrong. Lani is bright and joyful; though numbers evade her grasp, she speaks in full, luminous paragraphs—perhaps aided by the poetry she started writing in an Alzheimer’s Association Aloha Chapter-sponsored workshop. The writing seems to pump life into her stories about her father’s decline, her mother’s hard but triumphant life.
After explaining her father’s role as a Browning Automatic Rifle specialist in his Marine Corps platoon, she makes a nimble comic segue: “My first job out of college was as a bouncer at the Territorial Tavern,” she says, impishly.
“With two big guys standing behind you,” injects Greg Ambrosio, her husband, who has just retired.
They joke and smile, trade quips and scatological stories with wry Winifred, now 88. Like many who’ve lived with Alzheimer’s, nothing seems to faze them now. They’re leaving in a couple of weeks for a trip to Europe. “I’m not nervous,” she says, looking at Greg. “I’m lucky, I found the perfect man.”
Leslie also has a generous laugh and perspective. She laughs at how her mother, after being diagnosed with Alzheimer’s, took herself to the Wahiawā Hospital by bus and signed up to volunteer, then went down the road to the nearby Botanical Garden and did the same. “Mom is a Type-A personality, always active and a doer,” says Leslie. “Cute, but I’m also always chasing after her.”
george and ellen still lead a full life, including taking themselves to $6 movie dates by bus.
Ellen and George Matsumoto still go on movie dates every Tuesday, catching the bus to Pearlridge for $6 movie matinees. Monday and Wednesday are spent at the Wahiawā and Mililani recreation centers, taking part in senior programs. Leslie is proud of their reluctance to surrender their independence, but admits, “It’s been emotional accepting the changes. We’re taught to honor and respect our parents, to listen to what they say and to obey. I was trying to be the daughter and the caregiver, and it just didn’t work out that way. The roles are reversed now. They’re the children.”
More and more, what her mother says doesn’t make sense. “She may go on and it’s really goofy. And I’m learning not to stop her. You just have to enter their world.”
For Lani, being inside the world of Alzheimer’s and yet still able to appreciate its difference, “is fascinating. Yes, it’s a challenge. However many days I have left, I’m going to live them, and have some fun while I’m at it. Squeeze as much out of life as you can, right? While you have it.
“Look,” she adds, “we just kid ourselves—any of our lives could end at any moment. If you have the good fortune to live in one of the most beautiful places in the world, like Hawai‘i, and if you’re lucky to have a good husband or companion, you have it all.
“I have it all, and I have Alzheimer’s, too.”
Healthy heart, Healthy brain
This year is the 50th anniversary of the Honolulu Heart Program, started at Kuakini Medical Center in 1965. A valuable source of data and a baseline, it led to a spinoff dementia study in 1991 of 8,006 men of Japanese-American ancestry age 71 to 93 years.
The connection to the heart study proved fortuitous. “Our study was one of the first to find hypertension and high blood pressure predictive for dementia and even Alzheimer’s in late life,” says Dr. Kamal Masaki, director of research at Kuakini Medical Center.
“If high blood pressure is left untreated, there is almost five times the risk of developing dementia and Alzheimer’s,” she explains. “Yet if high blood pressure is treated in midlife, the risk is almost completely removed. However, if you wait to start treatment until people are older, it’s too late.”
Another significant find, more particular to Hawai‘i and Asia, was a vulnerability to vascular dementia, which is caused by tiny, often undetectable strokes. “What we found in our Japanese-American men were histories of what are called silent strokes. The patients didn’t even know they’d had one, but would gradually develop memory problems. We’d do a scan and find several minor strokes” that had been missed by doctors and family members.
The same unusual rate of vascular stroke was also seen in men in Japan, Korea and China. “Unfortunately,” says Masaki, “when the study was started, it only involved men,” so that was how it had to be continued—which means the secret to our population of ageless aunties remains a mystery.
But maybe not for long, says Masaki. “What allows people to live long lives, and then what allows them to live healthy long lives, is the big focus of our study now.”
Four ways to prevent or delay Alzheimer’s/dementia
A breakthrough treatment may be decades away, but science has strongly lined up behind lifestyle changes that can delay and even prevent the onset of Alzheimer’s and dementia.
1. Daily physical exercise, specifically 20 to 30 minutes of brisk walking, has been shown to lower the risk of memory decline (one study says by 46 percent).
2. A diet rich in omega-3 fats from fish and nuts, with plenty of antioxidant fruits and vegetables, reduces dementia risk (by 44 percent, says one study). Also, avoid fast, fried, junk and processed food.
3. Taking on complex mental tasks, especially in midlife, decreases dementia risk (by 48 percent, in studies), which means, do those puzzles and brain-teasers, learn a second language, go back to school, vary your routines, travel, write long letters, etc.
4. Reduce stress, which can cause depression and a twofold increase of risk of Alzheimer’s—meditation, yoga and seven to eight hours of sleep a night do wonders; so does a strong social network (friends and family); and, yes, having that daily glass of red wine.
Sources: Archives of Internal Medicine, 2010; A. Kramer, University of Illinois study; The American Journal of Clinical Nutrition, 2005; The American Journal of Geriatric Psychiatry, 2009; G. Small, UCLA Longevity Center; others.
Where are the breakthroughs?
Since its acceptance as a widespread diagnosis in 1968, Alzheimer’s has lacked effective treatment options. Then, as now, patients were treated with antipsychotics and sedatives developed for other diseases, to calm them down. Two medicines later developed to slow the rate of decline in patients with dementia were donepezil (Aricept) and memantine (Namenda), now sold as a combination, Namzaric.
“They’re used currently to replace a chemical deficiency,” says Dr. Kamal Masaki, professor and chair of the Department of Geriatric Medicine at JABSOM as well as director of research at Kuakini Medical Center. “We need something to stop the development of the plaques and tau tangles in the brain that cause the brain to die.”
Anticipation was high in 2012 for a breakthrough drug, solanezumab, from Eli Lilly, that would arrest the death of brain cells in patients. But trial results were viewed as a failure. Facing a horizon without new trials, researchers went back to solanezumab’s inconclusive clinical trial. In July 2015, they published data suggesting that, by starting patients on the drug earlier, the pace of brain decline could be slowed. If so, says Dr. Eric Siemers of Lilly Research Laboratories, “We think there is a chance that solanezumab will be the first disease-modifying medication to be available.” New trials will be completed in October 2016.
What’s normal and what’s Alzheimer’s?
Don’t worry, that thing you forgot is not a sign of Alzheimer’s. Two things? Are you absolutely, positively sure it’s only two?
|Poor judgment, decision-making||VS||Making a bad decision once in a while|
|Inability to manage a budget||VS||Missing a monthly payment|
|Losing track of the date or the season||VS||Forgetting what day it is and remembering later|
|Difficulty having a conversation||VS||Sometimes forgetting which word to use|
|Misplacing things and being unable to retrace steps and find them||VS||Losing things from time to time|
Other Alzheimer’s warning signs: difficulty completing familiar tasks, trouble understanding visual images or spatial relationships, withdrawal from work or social activities, changes in mood and personality, challenges in planning or solving problems.
SOURCE: ALZHEIMER’S ASSOCIATION
Alzheimer’s Association (national)
(800) 272-3900, alz.org
Aloha Chapter Alzheimer’s Association
Elder Law Program
City & County of Honolulu Elderly Affairs Division
Hawai‘i Aging and Disability Resource Center
City and Family Service
Kōkua Care: Hawai‘i Home Care