The behind the scenes experiences that go on in the lives of
family caregivers of patients with dementia can be traumatizing. Alzheimer’s aggression is not uncommon. Where
does this leave the Chaplain? How does
he/she respond to the family caregivers as they try to process the rage that
explodes all over them in such an experience?
The caregivers, no doubt, are already weary and could very well be worn
out. They need the Chaplain to just
listen and empathize with them. A gentle
suggestion of respite care might be in order, but an empathetic presence is
always in order. As you read the
following story from “A Place for Mom” (http://www.aplaceformom.com/senior-care-resources/articles/alzheimers-aggression)
ask yourself how you would be that empathetic presence for this family.
Charlie Powell feels like he lost his dad a long time ago.
His dad, who has Alzheimer's disease, doesn't just forget who Powell is-he
sometimes becomes violent.
"Once, me and mom disabled his car so that he couldn't
drive it, and he soon realized what we'd done," Powell, 50, says. "He
rushed across the living room and literally growled at me like a bear in the
most frightful way. Thirty seconds later, he didn't know he'd done it, and
everything was fine."
The "bear incident" is just one of many that
eventually caused Powell and his family to put their 86-year-old father into a
nursing home. "Once, the doctors noticed that mom's eardrums were both
ruptured, and they realized dad probably slapped her upside the head and cupped
her ears."
Unfortunately, Alzheimer's aggression is fairly common among
Alzheimer's patients. There's cursing, hitting, grabbing, kicking, pushing,
throwing things, scratching, screaming, biting, and making strange noises. More
than 4.5 million Americans are diagnosed with Alzheimer's disease every year,
and up to half can show some of these behaviors. The number of total
Alzheimer's sufferers is projected to balloon to 16 million by 2050.
Alzheimer's aggression is one of the main reasons most
people put their parents in nursing homes. Fortunately, new medications and
coping methods can help, though agitation and aggression are still a
misunderstood aspect of Alzheimer's.
"The public thinks Alzheimer's is a memory
disease," says Dr. Ramzi Hajjar, a geriatrician at St. Louis University in
Missouri. "But, in fact, there are lots of neuropsychiatric symptoms.
Alzheimer's patients often develop delusions. They think their family is
stealing things from them, for example. And they get very aggressive and
irritable towards their spouse." He stresses that families need to always
remember that Alzheimer's aggression really has nothing to do with them.
"The child always wants to take it personally, which causes unnecessary
anxiety," Hajjar says.
What's Behind the Behavior?
No one knows for sure why some Alzheimer's patients lash out
and others don't, but one University of Kansas study showed that recognition
was the strongest predictor. Forgetting what something was, or what was inside
something, was the most common cause of aggressive behavior.
Other studies have shown that Alzheimer's patients sometimes
act out because of side effects like headaches, constipation, and nausea from
some anti-anxiety medications such as Xanax® (alprazolam), Ativan® (lorazepam),
and BuSpar® (buspirone). Patients who can't communicate often express their
discomfort from those symptoms by becoming even more agitated and combative.
The first step in managing difficult behavior in the care
for Alzheimer's patients is to find out where it's coming from and what it
means. Does the agitation or combativeness mean the patient is hungry or thirsty
or scared? Is it a reaction to something threatening or uncomfortable in their
environment?
"I've seen people strike out because of their
distress," says Dr. Ruth Tappen, director of the Louis and Anne Green
Memory and Wellness Center at Florida Atlantic University in Boca Raton,
Florida. "Once, a Holocaust victim would have his memories return at
night, and he'd get aggressive, yelling and carrying on at his wife; twice he
even brandished a knife. He was defending himself from long-gone dangers."
Other times, agitation starts when patients get frustrated
with themselves, as simple memories start slipping away. They might forget
where they put the keys, or what time their dinner appointment is that night.
After asking a few times, everyone around them becomes irritated, and they get
agitated.
But it's sometimes hard to know exactly why some lash out.
That's what author Jacqueline Marcell learned, the hard way. Marcell, who wrote
the book Elder Rage after an entire year of experiencing her father's Alzheimer's
aggression, says she grew to learn what situations would trigger her dad's
outbursts. But first, it took a year of doctor visits to even diagnose him
correctly with Alzheimer's.
Managing and Treating the Aggression
Using medications to manage aggressive behaviors in dementia
patients is considered very controversial. Doctors have tried using traditional
(first-generation) antipsychotic drugs such as Mellaril® (thioridazine) and
Haldol® (haloperidol), but their effectiveness was limited and carried some
unpleasant side effects such as vomiting and nausea. Atypical or second
generation, antipsychotics (such as Seroquel® and Risperdal®) have been found
to be somewhat more effective in reducing behavioral problems, but they have not
been approved for use in dementia patients by the FDA. In fact, the FDA has
issued a warning in April, 2005 regarding "atypical" (second
generation) antipsychotics in dementia patients. The warning states "that
older patients treated with atypical antipsychotics for dementia had a higher
chance for death than patients who did not take the medicine." Because
this warning does not actually prevent doctors from legally prescribing these
medications for this type of "off-label" use, it is extremely
important that families understand the potential risks involved and proceed
with caution.
Fortunately, drugs aren't the only answer. There are other
ways that you can improve your situation. The following are some techniques and
strategies that have helped many people successfully care for Alzheimer's
patients and manage the Alzheimer's aggression:
Label and use signs, suggests Beth Nolan, PhD, author of the
University of Kansas recognition study (see above: What's Behind the
Behaviors). Place signs on rooms to say what they're for, put name tags on
guests when they visit, and put labels on common items, like clocks and
telephones. Tape explanatory phrases on doors or cupboards to tell them what's
inside.
Know what the triggers are, and try to divert them. Typical
triggers include getting people undressed for showers-they find the shower
rooms cold and echoing. Or, being in a crowd can trigger the fear of getting
lost. "If what you're doing is causing them to react, stop and step
away," says Patricia Drea, RN, a 20-year eldercare veteran who works with
Visiting Angels, a company that provides in-home care for the elderly.
"Then, redirect them to another activity. Say, 'Here, let me help you
stand up,' then move them to the next thing you'd like them to do." Try to
distract the person with a pleasurable topic or activity. Arguing will make
things worse. If necessary, leave the room and give the person time to calm
down.
Use logic and reason. "When my mom-who also had
Alzheimer's-left her watch in the sugar bowl, I didn't accuse her,"
Marcell says. "Instead, I said, 'Mom, why is there a watch in the sugar
bowl?' She'd say, 'I don't know,' and I'd say, 'How do you think it got there?'
Using logic helped her a lot."
Validate their feelings.
Tell them it's OK to be frustrated, or sad, or lonely.
Use a gentle tone and reassuring touches. Studies
consistently prove this works. "Always smile, and look kind and
gentle," Drea says. "Your face is an important signal that everything
is alright."
Stick to a regular routine. This will help minimize the
number of unexpected and stressful events.
Ignore the angry behavior-if distraction and support do not
work. If the situation is threatening, make sure he is unlikely to harm himself
and stay clear until he calms down.
Maintain a sense of humor. "Anticipating that there
will be ups and downs, and maintaining patience, compassion, and a sense of
humor will help you cope more effectively with difficult behavior," says
Catherine Johnson, PhD, a psychologist who specializes in dementia at St.
Joseph's Hospital in St. Paul, Minnesota. "It's important to remember that
it's the disease, not the person, causing the behavior."
Try music. Sometimes singing an old favorite song can get
someone to calm down instantly. The American Academy of Neurology recommends
using music to reduce many problem behaviors. They say it's most effective
during meal or bath time. If you don't sing, play a song from their old
collection.
Learn how to debrief after an incident and identify what
caused it. Ask yourself, "'What can
I do differently the next time, to avoid the aggressive reaction?'"
Johnson says. "Learn to resolve the emotional reaction you as a caregiver
had. Then, you can move forward effectively. Take care of yourself."
Seek support for yourself as a caregiver. Finding support
groups and counselors to help you cope is one of the most important things you
can do. Not only can you help yourself deal with the difficult times, some of
the people you meet may have some useful advice on managing the aggression.
Some good places to begin include The Alzheimer's Association (www.alz.org) and
the Alzheimer's Disease Education and Referral Center (ADEAR)
(www.alzheimers.org).
Perhaps the most comforting thing about Alzheimer's
aggression is that, for many patients, it's a phase that will pass. While the
dementia itself is irreversible and will continue to worsen, for many patients
the aggressive behaviors do seem to subside over time. Because this is a phase
that can last for years, however, trying to wait it out without dealing with
the behaviors is usually not an effective strategy for coping with the problem.
For some, the challenges of handling Alzheimer's aggression
can become too great, and they may decide that they must place their loved one
in a skilled nursing facility. Although this is never an easy decision, those
like Charlie Powell know they have done the best they can, and that relying on
the professional care available in a nursing home is the smartest choice.
"I know my dad is getting the best possible care
now," Powell says. "And that's all that matters."
