WASHINGTON (AP) — As her mother's Alzheimer's
worsened over eight long years, so did Doreen Alfaro's bills: The walker, then
the wheelchair, then the hospital bed, then the diapers — and the caregivers
hired for more and more hours a day so Alfaro could go to work and her elderly
father could get some rest.
Alfaro and her husband sold their California house
to raise money for her mother's final at-home care. Six years later, the
58-year-old Alfaro wonders if she eventually develops Alzheimer's, too,
"what happens to my care? Where will I go?"
Dementia is poised to become a defining disease of
the rapidly aging population — and a budget-busting one for Medicare, Medicaid
and families. Now the Obama administration is developing the first National
Alzheimer's Plan, to combine research aimed at fighting the mind-destroying
disease with help that caregivers need to stay afloat.
"This is a unique opportunity, maybe an
opportunity of a lifetime in a sense, to really have an impact on this
disease," says Dr. Ronald Petersen of the Mayo Clinic, who chairs a
committee that later this month begins advising the government on what that
plan should include.
An estimated 5.4 million Americans have Alzheimer's
or similar dementias. It's the sixth-leading killer. There is no cure;
treatments only temporarily ease some symptoms. Barring a research
breakthrough, those numbers will worsen steadily as the baby boomers gray: By
2050, anywhere from 13 million to 16 million Americans are projected to have
Alzheimer's, costing a $1 trillion in medical and nursing home expenditures.
But that's not the full toll. Sufferers lose the
ability to do the simplest activities of daily life and can survive that way
for a decade or more, requiring years of care from family, friends or paid
caregivers. Already a recent report finds that nearly 15 million people, mostly
family members, are providing more than $200 billion worth of unpaid care.
Thousands of those caregivers have turned out at
public meetings since early August — and at a "telephone town
meeting" organized by the Alzheimer's Association that drew 32,000 people
— pleading for a national Alzheimer's strategy to bring changes.
They want primary care doctors trained to diagnose
dementia earlier, describing how years of missed symptoms cost them precious
time to make plans or seek treatment. That's a recommendation being echoed Tuesday
in an international Alzheimer's report.
They demand to know why the National Institutes of
Health spends about six times more on AIDS research than on Alzheimer's, when
there are good drugs to battle back the HIV virus but nothing comparable for
dementia.
Overwhelmingly, they ask for resources to help
Alzheimer's patients live their last years at home without ruining their
caregivers' own health and finances.
"Either you're rich and can afford $25 an hour
for care at home, or you send him to a facility. We're in the middle of the
road," says Shirley Rexrode of suburban San Francisco, whose 85-year-old
father, Hsien-Wen Li, was diagnosed with Alzheimer's nearly three years ago.
Adult day care didn't work out — even at $90 a day,
the only place with an opening couldn't handle the behaviors of Alzheimer's.
Rexrode says her mother, Li's primary caregiver, has suffered some depression
from the stress.
"We just have to muddle through, but we don't
know how long we can," Rexrode says.
And while Medicare will pay for doctor bills and
medications, even getting to the doctor can be a hurdle. When her 89-year-old
mother with advanced Alzheimer's developed a urinary tract infection, Susan
Lynch couldn't find a doctor willing to come to her parents' home in Fall River,
Mass. Lynch flew there from her Gaithersburg, Md., home but couldn't carry her
mother down the stairs. A private ambulance service didn't have an opening for
weeks. Lynch wound up calling the town ambulance for a costly but
Medicare-covered trip to the emergency room.
Federal health officials, who promise a first draft
of the national plan by December, say they're getting the message.
"Folks desperately, desperately want to be
able to provide the care themselves," says Donald Moulds, a deputy assistant
secretary at the Department of Health and Human Services who oversees the
project. "It's very, very hard work. Figuring out better mechanisms for
supporting people who are trying to do that work is, one, the right thing to
do."
It also may be cheaper for taxpayers. Nursing homes
not only are pricier than at-home care, but many families only can afford them
through Medicaid, the health care program for the poor. Another key, Moulds
says, is better care coordination as Alzheimer's complicates the many other
health problems of aging.
But given the budget crisis, the big question is
whether any anti-Alzheimer's strategy can come with enough dollars and other
incentives attached to spur true change.
"That's a concern, a very real one," says
Mayo's Petersen.
The law that requires a national Alzheimer's plan
didn't set funding, and Moulds is mum on a possible price tag. Almost complete
is an inventory of all Alzheimer's-related research and care reimbursement paid
for by the U.S. government, to look for gaps that need filling and possible
savings to help pay for them.
Other countries including England and Australia —
and 25 U.S. states, by Moulds' count — have developed their own Alzheimer's
plans. But the U.S. is taking a special look at France, where President Nicolas
Sarkozy in 2008 pledged to invest 1.6 billion euros, about $2.2 billion, over
five years for better diagnosis, research and caregiver support and training.
Sarkozy told an international Alzheimer's
Association meeting in July that he wants to guarantee "that no French
family is left without support."
On Tuesday, a report from the advocacy group
Alzheimer's Disease International says every country should have a national
dementia strategy that stresses earlier diagnosis. Most of the estimated 36
million people worldwide living with dementia, and as many as half of U.S.
patients, haven't been formally diagnosed, the report says. That's in part
because of stigma and the belief that nothing can be done, but the report notes
that even today's imperfect medications can help, a diagnosis lets families
plan ahead, and scientists are working to create treatments that one day may
slow the disease.
At meetings around the U.S., families say any
Alzheimer's plan must bring better understanding of a disease too often
suffered in isolation.
"What I want to see is mainly awareness,
awareness of this disease and what it does not only to the individual but also
to the network of family and friends that are going to care for the
person," says Alfaro, of Aptos, Calif.
"It should be as understood as diabetes, and
as treatable," adds Audrey Wiggins of Triangle, Va., whose father has and
grandmother died of Alzheimer's.
Copyright 2011 The Associated Press.
(AP
Photo/Ben Margot)
