Todd Heisler/The New York Times
PHOENIX — Margaret Nance was, to put it mildly, a difficult case.
Agitated, combative, often reluctant to eat, she would hit staff members
and fellow residents at
nursing homes,
several of which kicked her out. But when Beatitudes nursing home
agreed to an urgent plea to accept her, all that changed.
Disregarding typical nursing-home rules,
Beatitudes allowed Ms. Nance, 96 and afflicted with
Alzheimer’s,
to sleep, be bathed and dine whenever she wanted, even at 2 a.m. She
could eat anything, too, no matter how unhealthy, including unlimited
chocolate.
And she was given a baby doll, a move that seemed so jarring that a
supervisor initially objected until she saw how calm Ms. Nance became
when she rocked, caressed and fed her “baby,” often agreeing to eat
herself after the doll “ate” several spoonfuls.
Dementia
patients at Beatitudes are allowed practically anything that brings
comfort, even an alcoholic “nip at night,” said Tena Alonzo, director of
research. “Whatever your vice is, we’re your folks,” she said.
Once, Ms. Alonzo said: “The state tried to cite us for having chocolate
on the nursing chart. They were like, ‘It’s not a medication.’ Yes, it
is. It’s better than Xanax.”
It is an unusual posture for a nursing home, but Beatitudes is actually following some of the latest science.
Research
suggests that creating positive emotional experiences for Alzheimer’s
patients diminishes distress and behavior problems.
In fact, science is weighing in on many aspects of taking care of
dementia patients, applying evidence-based research to what used to be
considered subjective and ad hoc.
With virtually no effective medical treatment for Alzheimer’s yet, most
dementia therapy is the caregiving performed by families and nursing
homes. Some 11 million people care for Alzheimer’s-afflicted relatives
at home. In nursing homes, two-thirds of residents have some dementia.
Caregiving is considered so crucial that several federal and state
agencies, including the Department of Veterans Affairs, are adopting
research-tested programs to support and train caregivers. This month,
the
Senate Special Committee on Aging held a forum about Alzheimer’s caregiving.
“There’s actually better evidence and more significant results in
caregiver interventions than there is in anything to treat this disease
so far,” said Lisa P. Gwyther, education director for the
Bryan Alzheimer’s Disease Research Center at Duke University.
The
National Institute on Aging and the
Administration on Aging
are now financing caregiving studies on “things that just kind of make
the life of an Alzheimer’s patient and his or her caregiver less
burdensome,” said Sidney M. Stahl, chief of the Individual Behavioral
Processes branch of the Institute on Aging. “At least initially, these
seem to be good nonpharmacological techniques.”
Techniques
include using food, scheduling, art, music and exercise to generate
positive emotions; engaging patients in activities that salvage
fragments of their skills; and helping caregivers be more accepting and
competent.
Changing the Mood
Some efforts involve stopping anti-anxiety or antipsychotic drugs, used to quell
hallucinations
or aggression, but potentially harmful to dementia patients, who can be
especially sensitive to side effects. Instead, some experts recommend
primarily giving drugs for
pain or depression, addressing what might be making patients unhappy.
Others recommend making cosmetic changes to rooms and buildings to affect behavior or mood.
A
study
in The Journal of the American Medical Association found that
brightening lights in dementia facilities decreased depression,
cognitive deterioration and loss of functional abilities. Increased
light bolsters circadian rhythms and helps patients see better so they
can be more active, said Elizabeth C. Brawley, a dementia care design
expert not involved in the study, adding, “If I could change one thing
in these places it would be the lighting.”
Several German nursing homes have
fake bus stops
outside to keep patients from wandering; they wait for nonexistent
buses until they forget where they wanted to go, or agree to come
inside.
And Beatitudes installed a rectangle of black carpet in front of the
dementia unit’s fourth-floor elevators because residents appear to
interpret it as a cliff or hole, no longer darting into elevators and
wandering away.
“They’ll walk right along the edge but don’t want to step in the black,”
said Ms. Alonzo, who finds it less unsettling than methods some
facilities use, bracelets that trigger alarms when residents exit.
“People with dementia have visual-spatial problems. We’ve actually had
some people so wary of it that when we have to get them on the elevator
to take them somewhere, we put down a white towel or something to cover
it up.”
When elevator doors open, Beatitudes staff members stand casually in
front, distracting residents with “over-the-top” hellos, she said: “We
look like Cheshire cats,” but “who’s going to want to get on the
elevator when here’s this lovely smiling person greeting you? It gets
through to the emotional brain.”
Six minutes later, participants had trouble recalling the clips. But 30
minutes later, emotion evaluations showed they still felt sad or happy,
often more than participants with normal memories. The more
memory-impaired patients retained stronger emotions.
Justin Feinstein, the lead author, an advanced neuropsychology doctoral
student, said the results, being studied with Alzheimer’s patients at
Iowa and Harvard, suggest behavioral problems could stem from sadness or
anxiety that patients cannot explain.
“Because you don’t have a memory, there’s this general free-floating
state of distress and you can’t really figure out why,” Mr. Feinstein
said. Similarly, happy emotions, even from socializing with patients,
“could linger well beyond the memories that actually caused them.”
One
program
for dementia patients cared for by relatives at home creates specific
activities related to something they once enjoyed: arranging flowers,
filling photo albums, snapping beans.
“A gentleman who loved fishing could still set up a tackle box, so we
gave him a plastic tackle box” to set up every day, said the program’s
developer, Laura N. Gitlin, a sociologist at Thomas Jefferson University
in Philadelphia and newly appointed director of a new center on aging
at Johns Hopkins University.
After four months, patients seemed happier and more active, and showed
fewer behavior problems, especially repetitive questioning and
shadowing, following caregivers around. And that gave caregivers breaks,
important because studies suggest that “what’s good for the caregiver
is good for the patient,” Professor Gwyther said.
Aiding the Caregiver
In fact, reducing caregiver stress is considered significant enough in
dementia care that federal and state health agencies are adopting
programs giving caregivers education and emotional support.
One,
led by Mary S. Mittelman, a New York University dementia expert, found
that when people who cared for demented spouses were given six
counseling sessions as well as counselors whom they could call in a
crisis, it helped them handle caregiving better and delayed by 18 months
placing patients in nursing homes.
“The patient did not have fewer symptoms,” Dr. Mittelman said. “It was the caregiver’s reaction that changed.”
The Veterans Affairs Department is adopting another program,
Resources for Enhancing Alzheimer’s Caregiver Health,
providing 12 counseling sessions and 5 telephone support group
sessions. Studies showed that these measures reduced hospital visits and
helped family caregivers manage dementia behaviors.
“Investing in caregiver services and support is very worthwhile,” saving
money and letting patients remain home, said Deborah Amdur, chief
consultant for care management and social work at the Veterans Affairs
Department.
Beatitudes, which takes about 30 moderate to severe dementia sufferers, introduced its
program 12 years ago, focusing on individualized care.
“In the old days,” Ms. Alonzo said, “we would find out more about
somebody from their obituary than we did when they were alive.”
The dementia floor was named Vermillion Cliffs, after colorfully layered
rock formations formed by centuries of erosion, implying that,
“although weathered, although tested by dementia, people are beautiful”
and “have certain strengths,” said Peggy Mullan, the president of
Beatitudes.
The facility itself is institutional-looking, dowdy and “extremely outdated,” Ms. Mullan said.
“It’s ugly,” said Jan Dougherty, director of family and community
services at Banner Alzheimer’s Institute in Phoenix. But “they’re
probably doing some of the best work” and “virtually have no
sundowning,” she said, referring to agitated, delusional behavior common
with Alzheimer’s, especially during afternoon and evening.
Beatitudes eliminated anything potentially considered restraining, from
deep-seated wheelchairs that hinder standing up to bedrails (some beds
are lowered and protected by mats). It drastically reduced
antipsychotics and medications considered primarily for “staff
convenience,” focusing on
relieving pain, Ms. Alonzo said.
It encouraged keeping residents out of diapers if possible, taking them
to the toilet to preserve feelings of independence. Some staff members
resisted, Ms. Alonzo said, but now “like it because it saves time” and
difficult diaper changes.
Family members like Nancy Mendelsohn, whose mother, Rose Taran, was
kicked out of facilities for screaming and calling 911, appreciate it.
“The last place just put her in diapers, and she was not incontinent at
all,” Ms. Mendelsohn said.
Ms. Alonzo declined to pay workers more to adopt the additional skills
or night work, saying, “We want people to work here because it’s your
bag.”
Finding Favorite Things
For behavior management, Beatitudes plumbs residents’ biographies,
soothing one woman, Ruth Ann Clapper, by dabbing on White Shoulders
perfume, which her biographical survey indicated she had worn before
becoming ill. Food became available constantly, a canny move, Ms.
Dougherty said, because people with dementia might be “too distracted”
to eat during group mealtimes, and later “be acting out when what they
actually need is food.”
Realizing that nutritious, low-salt, low-fat, doctor-recommended foods
might actually discourage people from eating, Ms. Alonzo began carrying
chocolate in her pocket. “For God’s sake,” Ms. Mullan said, “if you like
bacon, you can have bacon here.”
Comforting food improves behavior and mood because it “sends messages
they can still understand: ‘it feels good, therefore I must be in a
place where I’m loved,’ ” Ms. Dougherty said.
Now, when Maribeth Gallagher, dementia program director for Hospice of
the Valley, which collaborates in running Beatitudes's program, learns
someone’s favorite foods, “I’m going to pop that on your tongue, and
you’re going to go ‘yum,’ ” she said. “Isn’t that better than an
injection?”
Beatitudes also changed activity programming. Instead of group events
like bingo, in which few residents could actually participate, staff
members, including housekeepers, conduct one-on-one activities:
block-building, coloring, simply conversing. State regulators initially
objected, saying, “Where’s your big group, and what you’re doing isn’t
right and doesn’t follow regulations,” Ms. Alonzo said.
Ms. Mullan said, “I don’t think we ever got cited, but it was a huge fight to make sure we didn’t.”
These days, hundreds of Arizona physicians, medical students, and staff
members at other nursing homes have received Beatitudes’
training, and several Illinois nursing homes are adopting it. The program, which received an
award from an industry association, the
American Association of Homes and Services for the Aging, also appears to save money.
Arlene Washington’s family moved her to Beatitudes recently, pulling her
from another nursing home because of what they considered inattentive
and “improper care,” said her husband, William. Mrs. Washington, 86, was
heavily medicated, tube fed and unable to communicate, “like she had no
life in her,” said Sharon Hibbert, a friend.
At Beatitudes, Dr. Gillian Hamilton, administrative medical director,
said she found Mrs. Washington “very sedated,” took her off
antipsychotics, then gradually stopped using the feeding tube. Now Mrs.
Washington eats so well she no longer needs the insulin she was
receiving. During a recent visit, she was alert, even singing a hymn.
That afternoon, Ms. Nance, in her wheelchair, happily held her baby
doll, which she named Benjamin, and commented about raising her sons
decades ago.
Ms. Alonzo had at first considered the doll an “undignified” and
demeaning security blanket. But Ms. Gallagher explained that “for a lot
of people who are parents, what gives them joy is caring for children.”
“I was able,” Ms. Gallagher said, “to find Margaret’s strength.”
Ms. Gallagher said she learned when approaching Ms. Nance to “look at
her baby doll, and once I connect with the doll, I can look at her.”
She squatted down, complimented Benjamin’s shoes, and said, “You’re the best mom I know.”
Ms. Nance nodded earnestly.
“It’s good to know,” Ms. Nance said, “that somebody knows that you care.”
There are a lot of similarities between a small child and someone living with dementia. Specifically, frontotemporal degeneration. I remember so many of my mom’s odd quirks. Once, she poured her Coke into her glass of red wine. She drank it, much to my dismay. My toddler did something similar recently. She poured water into a bowl of hard boiled eggs then she mixed it around and ate it. I immediately thought of my mom. I can’t remember if I laughed or felt sad. Her disease caused her to mentally and emotionally regress… a real life Benjamin Button. I always thought having a young child would be, in some ways, easier than having a mother with dementia. In some ways it is: there’s so much more joy, more laughter, fewer tears. My toddler is also considerably lighter than my mother, and when she is upset or angry, I can actually pick her up and hold her… or relocate her. Something I wasn’t exactly able to do with mom (remember those times with her priest?). Lately though, I have been missing my mom; missing something about her… I can’t quite put my finger on the what. Maybe just her presence. Her scent…. I don’t know. I lost my mom, really, when I was in my 20s… I became the parent and she became the child. Before that, I was living in another city thousands of miles from home. I feel guilty about that. Maybe if I had stayed in Arizona, maybe I would have had more of those moments… precious moments that would have stuck with me, helped shape me into someone better that who I became. Instead, my memories are blurry… sometimes I’ll hear something or get a whiff of something and it’ll transport me to a particular time or place… but they’re few and far between. And sometimes I’ll dream about her. Those are the sweetest nights. I wish she came to me more often.
