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.
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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.”