Training Helps Ease Caregiver
Burden
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By LAURAN NEERGAARD, AP Medical Writer
The findings are stunning: Offering
simple training to people struggling to care for
loved ones with Alzheimer's disease not only eases
their burden — it even can keep patients out of
nursing homes for an extra 1 1/2 years. But the
exciting research also runs headlong into a grim
reality. Alzheimer's caregivers seldom can make time
in their daily grind to seek out that kind of help.
And when they do, they too often find waiting lists
for services, or programs geared only toward people
with advanced disease and not the larger pool in the
purgatory that is dementia's decade-long middle
ground between independence and helplessness.
That is one of Dolores Melnick's
biggest frustrations.
Her husband refused to enroll in the
"day care" for Alzheimer's patients near their
Hainesport, N.J., home. It was hosting a singalong,
and workers were setting up plastic bowling pins,
too childish for Bob Melnick. That meant no time for
her to sneak off to a caregiver support group. On
weekdays she worries about whether he'll be OK
because he's home alone while she's at work. "I
feel bad sometimes because he's home. I feel bad
that I have to leave in the mornings," Mrs. Melnick
says, eyes brimming with tears. "I think he realizes
he can't do much."_____
More than 5 million Americans are
living with Alzheimer's disease. It afflicts one in
eight people 65 and older, and nearly one in two
people over 85.Worse, as the population ages,
Alzheimer's is steadily rising. Sixteen million are
forecast to have the mind-destroying illness by
2050, not counting other forms of dementia. Those
figures are cited repeatedly in the push for more
research into better treatments. But a frightening
parallel goes largely undiscussed: As Alzheimer's
skyrockets, who will care for all these people? And
will the long-term stress of that care set up an
entire population — once-healthy spouses and
children — to suffer years of illness, even early
death?
"I don't think society and
policymakers have fully grasped the future magnitude
of what we're up against, and how massive an
operation we have to begin ... to deal with this,"
says Dr. Richard Suzman of the National Institute on
Aging.
Already, an estimated 10 million
people share the task of caring for a relative or
friend with dementia, the Alzheimer's Association
estimates. Nearly one in four provides care for 40
hours a week or more. Handling the wandering,
aggressive outbursts and incontinence — plus
eventual round-the-clock monitoring — is very
different than, for example, learning to lift
someone who's physically impaired but won't fight
the caregiver.
Those are skills that families must
be taught, says Mary Mittelman of New York
University's School of Medicine, who is leading a
new movement to develop customized training programs
for Alzheimer's care. Today, most learn through
trial and error. _____
Louise Eckert sits her 85-year-old
mother, Dorothy, in a chair backed against the wall
and pushes a heavy table in front of her. It keeps
her from tipping her chair backward like a
schoolchild. It's noon, but Dorothy roamed her
Norristown, Pa., home for much of the night and just
woke for breakfast. Louise spoon-feeds her mother:
grapes and prunes mixed into cereal; toast cut into
bites; Alzheimer's pills crushed into cottage cheese
so she no longer can spit them out. The
conversation is, well, unconventional.
"I want to hit you," Dorothy
whispers.
"You do not want to hit me,"
Louise calmly responds. Minutes later mother and
daughter are grinning affectionately.
"She'll hit you and two minutes
later, she loves you," says Dorothy's husband,
John Eckert, 88.
Not too long ago, the Eckerts
despaired of achieving this calm. Dorothy's
mild-mannered Alzheimer's suddenly morphed into
outright aggression. She climbed furniture, pulled
the TV on herself, tried to climb out the window.
Area aging services offered little advice. The
Eckerts finally found the right mix of medication
and caregiver tricks. Take Dorothy's night roaming,
a dementia trademark. Her husband installed bed
rails; she crashed over them. He slept holding a
belt tied to her waist; she slipped it off without
waking him. Now the couple sleeps on a mattress on
the floor. Large wind chimes jangle when Dorothy's
up.
"In the beginning there was
pressure. Now we expect it's going to happen," her
husband says of new symptoms. "You go along with the
flow."
John Eckert brushes aside questions
about the strain. He looks fit but has had prostate
cancer, a small heart attack and mild stroke. Louise
tried to hire a respite-care service so her dad
could take a walk. But it requires a four-hour daily
minimum, more than they need. Alzheimer's day care
runs in the mornings, when Dorothy sleeps. They
manage because Louise, the couple's youngest
daughter, lives with them and can rush home from her
counseling job at a nearby school if needed. They're
determined to make Dorothy's days as lighthearted as
possible.
"You could be mad about it, or
constantly sad about the whole thing, but why? This
is just who Mom is now," Louise explains.
So, they play Bobby Darin, and
Dorothy dances around the dining room. Song done,
she curls onto her husband's lap, head tucked under
his chin. She can't recall his name, or the last
name they've shared for 60 years. But she can
cuddle.
"She knows I belong here, I
guess," John says.
NYU's Mittelman says customized
training can help caregivers ease the chaos that the
Eckerts battled through, and proved it with a
one-of-a-kind experiment. She tested 406 elderly
New Yorkers caring for spouses with Alzheimer's.
Half received training tailored to their family's
unique needs. Half got today's standard: a list of
Alzheimer's resources.
Mittelman tracked these families for
up to 17 years. Custom-trained caregivers kept their
loved ones out of a nursing home for an average of 1
1/2 years longer than their untrained counterparts.
With annual nursing home costs now averaging
$60,000, that's a savings of $90,000 per patient,
Mittelman reported last fall in the journal
Neurology.
It didn't come at the spouse's
expense as trained caregivers experienced less
depression, and fewer physical health problems.
Importantly, the training was simple: Social
workers met with caregivers once a week for six
weeks, to assess each family's circumstances,
discuss how Alzheimer's worsens, and teach coping
skills. Caregivers were given phone numbers to call
counselors for more advice whenever they wanted.
That ongoing tailored care is "a
really crucial element," stresses Mittelman.
Without it, when the patient "has a personality
change and hits somebody for the first time in her
life, you won't have anyone to turn to." Mittelman
has begun new studies targeting training to early -
and middle-stage Alzheimer's.
And the National Institutes of Health
is studying a similar program that mixes in-home and
telephone training, sessions that include
role-playing to let caregivers practice the coping
skills they're learning. The NIH study has tracked
640 dementia caregivers in five states for just six
months so far. But initial results agree with
Mittelman: Trained caregivers report improved
quality of life, and feel they do a better job.
Together, the research represents a
major shift in scientists' approach to Alzheimer's
caregiving — from an emphasis on just giving
families a break through respite care, to the idea
of empowering them to better handle the stress of
the job. The challenge is how to spread those
findings.
Have a short conversation with Bob
Melnick, and it's not immediately clear that
anything's wrong with the smiling 67-year-old. He'll
reminisce over old fishing photos; proudly tell of
his two grown children; ask socially correct
questions:
"How are you today?" "Want to come
along while I walk the dog?"
Then the phone rings, and this former
accountant fumbles it, unsure how to answer. He
can't close the sliding glass door in his kitchen.
At lunch, he carefully sets his hoagie on his place
mat, next to the empty paper plate. This is the
often-hidden middle stage of Alzheimer's disease,
the stage where caregivers seem to struggle most.
"Many people have a stereotypical
idea that Alzheimer's disease is what you see in a
nursing home," Mittelman says. But, "in the
middle stage, there are behavioral problems which
are difficult to cope with."
Dolores Melnick has looked, in vain,
for help. As her husband was turning 60, Mrs.
Melnick noticed he'd lose his wallet or keys a lot.
Trouble with routine accounting work soon forced him
to retire. Worried, Mrs. Melnick sought long-term
care insurance. She listened in as her husband was
screened over the phone, aghast that he was failing
simple memory tests. The insurer turned him down,
and soon Alzheimer's was diagnosed.
To fill his days, Melnick got a job
at a nearby convenience store, mopping floors and
doing other easy tasks until he was fired for
forgetting instructions. Mrs. Melnick is 63, two
years shy of Medicare and three years away from her
normal retirement date. She loves her job, a
statistician at a cancer center. But she considered
quitting to care for her husband, only to learn that
retaining health insurance for herself plus his
Medicare expenses would cost a staggering $700 a
month.
"It's kind of hard to retire,"
she says with a weary smile. But what to do with
Melnick while she's at work?
He can't remember a plot long enough
to read or watch movies. He used to take pride in
household chores, but now can't work the appliances.
Even emptying the dishwasher ended when "dishes were
all over and I couldn't find them!" Mrs. Melnick
says with a laugh. He refuses adult day care.
Insurance won't pay the $17 to $22 an hour that
local home-health agencies charge for a visiting
aide, and Mrs. Melnick couldn't afford that.
So she cobbled together a compromise:
She pays a friend about $30 a day to stop by around
noon for three hours, to make lunch, help walk the
dogs and provide some companionship. Melnick spends
the mornings and late afternoons alone, outfitted
with an electronic tracking bracelet provided by the
sheriff's department in case he wanders outside and
gets lost. When she has an out-of-town business
meeting, her 85-year-old mother-in-law comes to
stay. Every few weekends, her daughter makes the
three-hour drive from Washington, D.C., to help out.
And Mrs. Melnick races home from work at 5:15. If
she's late, she'll find her husband pacing,
wondering where she was. It's a hint of Alzheimer's
classic "sundowning," where agitation increases with
dusk.
Some states are trying new ways to
increase Alzheimer's services. In Colorado, for
example, officials experimented with giving $1,000
stipends to help families hire monitoring for their
loved ones so they could attend a six-session
training program called the Savvy Caregiver. That
doesn't buy much respite, but it's a good
investment, says Cheryl Dunaway of the Colorado
Alzheimer's Association.
"The caregiver is the one who sets
the stage for whether it's a good day or bad day,
calm day or chaotic day, in how they respond to the
way the person with dementia is behaving," she
explains.
In Congress, Sen. Barbara Mikulski,
D-Md., is pushing legislation that would provide a
$3,000 federal income tax credit to offset some of
the expenses and lost income incurred by caregivers
of patients with Alzheimer's and other diseases.
NIH's Suzman says those costs
increase as dementia worsens, from about $7,400 a
year for moderate dementia to $17,700 for severe
dementia
Back in New Jersey, Mrs. Melnick is
anxiously hoping that tax credit will help. Within
the year, she expects to have to hire someone to
watch her husband all day while she works. Trying to
plan beyond that brings only fear. "Do I have to
think about a nursing home in a year, two years? ...
It's not like cancer, where they say you have six
months to live. They really can't say that with
Alzheimer's."
FOR IMMEDIATE
RELEASE | June 12, 2007
Alzheimer’s
Foundation of America Awards Excellence in Dementia
Care Specialist Status to Elayne Forgie
