Republished from: https://www.npr.org/sections/health-shots/2018/09/15/647992785/to-manage-dementia-well-start-with-the-caregivers
Lauren Gravitz
September 15, 2018
September 15, 2018
When Kate Sieloff's husband, Karl, began acting strange, she
didn't know where to turn. Her hard-working, affectionate spouse was suddenly
having fits of anger and aggression. He stopped paying the bills. Karl, 56 at
the time, was an engineer at General Motors, where he'd worked for more than 40
years. But some days he didn't even show up for work, finding it too hard to
get out of bed.
Because the problems were sporadic, most people in her life
couldn't see what was going on. They told Kate, of Romeo, Mich., that she was
imagining things. Doctors suggested that Karl was depressed and tried him on a
variety of medications. When he began depleting their savings on impulsive
purchases, and grew even more aggressive and violent, her son—a neurologist at
the University of Michigan's medical center in Ann Arbor—insisted she bring
Karl to his hospital for evaluation. Doctors there quickly diagnosed him with
frontotemporal dementia.
For Kate, the diagnosis was a relief, but she still felt
overwhelmed and needed help coping with her husband's illness. Getting his
diabetes medications under control, and starting him on a mood stabilizer and a
new antidepressant helped control his mood swings while restoring some of his
loving personality.
But there is no drug that can prevent or stop the eventual
progression of dementia. What she needed was something that could help make her
day-to-day caregiving more tolerable, and strategies to help him when the
confusion set in.
Things changed when she and Karl went to see Helen Kales and
her team at the Program for
Positive Aging.
Kales, a geriatric
psychiatrist who practices at the University of Michigan, in Ann Arbor,
has developed a behavioral approach to dementia care, one that puts the
caregiver first and emphasizes training and support for them as much as for the
patient. By teaching caregivers new ways to solve old problems, and to respond
to their own needs in as well as those of their loved ones, the approach helps
ease their burden while simultaneously improving the patient's experience. It's
a bit like airplane safety rules directing passengers to put on their own
oxygen masks before helping someone else.
One of the most important aspects of caring for someone with
Alzheimer's and other dementias is understanding the diseases. The difficulty,
Kales explains, isn't the memory loss, per se, but the behaviors that accompany
it — everything from anger to petulance to violence to depression.
"We think about dementia as a problem with memory, but
it's really behavioral," says Kales. "If you look at the medications
being used, they're all psychiatric and used to managed behavior:
antipsychotics, antidepressants, and sleep medication. Anxiety medication. We
even use mood stabilizers."
Yet despite the millions of dollars spent on these drugs,
she says, study after study has shown that their efficacy in treating dementia
is typically quite small.
Rather, research suggests that it's far better to use
behavioral and environmental approaches — ones that are sensitive to, and focus
on, the needs of a patient, Kales says. "Particularly when you train
family caregivers to deliver them in the home."
As more people survive into their 80s and 90s, there are more
people living with Alzheimer's and other dementias than ever before. And the
burden is one that primary-care physicians can't handle alone.
"We realized we needed to do something different,"
Kales says. "We just can't train enough physicians to provide dementia
care. Instead, we need to take the daily treatment and management of these
patients out of the hands of physicians and put it into the hands of the
caregivers themselves."
It's an important move. Researchers have shown that the
majority of people with dementia are cared for at home by members of their
family. And that those family members, in turn, have higher incidence of stress
and depression, as well as lower overall quality of life.
"The trick seems to be in training family caregivers to
spot triggers of behavior and problem-solve around those triggers, to look for
underlying causes and then creatively develop strategies," Kales says. But
such approaches are rarely employed because there's no systematic way to teach
people how to use them.
That's where Kales' DICE approach comes in. The method — an
acronym representing the four main steps of the process — trains those who look
after people with dementia to thoughtfully address behavioral issues. Those
steps are: Describe a behavior, thinking about what happens and the context in
which it occurs; Investigate its possible causes; Create and implement a plan
to address the behavior; and evaluate the results to determine what worked.
No one had ever provided family caregivers with such a
user-friendly method before, says Katie Brandt, the director of Caregiver
Support Services for the Frontotemporal
Disorders Unit at Massachusetts General Hospital, in Boston.
"[Kales] took theories about dementia care and behavior
management and turned it into a step by step approach that people can
apply," she says.
Here's how it can play out. Ideally, instead of giving
someone a Valium because they're particularly cantankerous, caregivers would
look deeper, analyzing the behavior to figure out why it's occurring. This can
take extra effort when dealing with a patient who can't communicate in a linear
way, or at all, about their experience. In this and other ways, it's not unlike
caring for an infant.
As an example, Kales points to one of her patients, who came
into the clinic with his daughter. The daughter mentioned that her dad had been
extra ornery that morning, swatting at her as she tried to get him into the
car. A physical exam showed that he was experiencing pain in one of his arms,
so Kales sent him for an X-ray, which revealed a torn rotator cuff.
"Someone could cover that over with a medication,
sedate the gentleman, and he'd continue to have the painful, pathological
condition that requires treatment," she says.
Often, caregivers are given list after list of things they
could do to make a house safer or a day of caretaking go more smoothly. But,
Kales says, "None of those approaches are really effective for all people.
The solution is really in the tailoring of the approach to the symptom, the
situation, the caregiver."
Kales's clinic has had success teaching DICE to their
caregivers. And for Sieloff, the difference has been life-changing. She's
learned to better understand her husband's dementia, to help him stay calm and
feel in control, and to create solutions for some of his more irascible
moments.
With the program's help, she has taken control of her
finances, applied for different kinds of assistance, and come up with practical
ways to help Karl: a daily routine with limited choices; activities, such gardening,
that hew to his interests; and small cards that say, "Please understand my
husband has dementia," which she can hand strangers to de-escalate moments
when his anger gets out of control.
Beyond that, working with people in the program has helped
her own state of mind. Before her husband's diagnosis, family members and even
some therapists had blamed her for Karl's problems, or believed she was making
them up. "I needed to be absolved," she says. "For the longest
time, people told me it was my fault and I felt so much guilt. I wasn't
sleeping at night. Now I'm sleeping well."
The University of Michigan team hopes to make such help
universally available. They're creating publications and online tools to help
those outside their clinic, and just published the first pilot
study of a web-based DICE tool called WeCareAdvisor. For the study,
caregivers answered a series of questions online and the tool selected from
nearly 1,000 strategies to create a behavioral "prescription" for
them to try. If the new strategies didn't help, they ran through the process
again, testing new approaches. They also received an informational resource on
dementia and daily messages of encouragement and motivation. At the end of the
month-long trial, caregiver distress had decreased significantly.
Brandt has seen similar results teaching DICE in the Boston
area. "We know that care-giving is a threat to your health," Brandt
says. "And caregiver stress not only impacts the quality of life of the
caregiver, but also impacts the quality of life and quality of care of the
person living with dementia."
After coaching caregivers in her clinic, she says that it
appears to reduce stress, while helping them feel confident and more prepared
for the challenges that pop up. Massachusetts General Hospital is now looking
to adapt Kales WeCareAdvisor, which was developed primarily with caregivers of
Alzheimer's patients in mind, for use in frontotemporal dementia.
Kales says that a printed DICE manual should be available
for sale at the end of October and an interactive website—which will contain
video modules and e-simulation trainings—at the end of November.
As far as Seiloff is concerned, the sooner the better.
"I can't imagine where I would be without the DICE clinic," she says.
"It's given me a whole new life. I'm trying to tell everyone I know about
this."
Lauren Gravitz is a
science writer and editor. Her work has appeared in Nature, The Economist,
Aeon, Discover, The Oprah Magazine, and more. Find her at www.laurengravitz.com
and @lyrebard.com
