Caregivers a Focus During Alzheimer's Disease
Month
< Nov. 9, 2005 > --
An estimated 4.5 million Americans have Alzheimer's disease - a
figure that has more than doubled since 1980. But that number only
tells half of the story, according to the Alzheimer's
Association.
For every person with Alzheimer's, there are
one or more people dedicated to caring for them, often providing
24-hour, around-the-clock help as the patient grows less capable
and more feeble.
Those caregivers face a life of dramatic highs
and lows: swinging from the joy of knowing their loved one is home,
happy and safe, to dealing with the frustration and fear of the
increasingly erratic behavior of someone who is slipping away.
As medical knowledge of the disease has grown,
so too have the resources available to caregivers of Alzheimer's
patients.
November is National Alzheimer's
Disease Awareness Month, and experts are using the month
to urge caregivers to seek out the help that is available to them.
National Alzheimer’s
Disease Month is an annual national observance that was
established by former President Ronald Reagan in 1983. The observance
was begun as a way to increase public awareness and federal research
funding to find treatments and a cure for Alzheimer’s disease.
"One of the most important things someone can
do is get accurate information about the disease, about the disease
process, and what kind of helpful resources there are in their community," says
Kathleen O'Brien, senior vice president of program and community
services for the Alzheimer's Association.
The numbers showing Alzheimer's extended reach
are striking. In a Gallup poll commissioned by the Alzheimer's
Association, one in 10 Americans said they had a family member
with the disease, and one of every three people knew someone with
the disease.
Caregivers who are worn down by their service
to a loved one can experience a number of physical and mental symptoms,
including: anger and frustration; depression; fatigue; trouble sleeping;
decreased appetite; estrangement from friends or relatives; and
loss of interest in hobbies or enjoyable activities.
"There's a huge amount of physical toll and emotional
toll that can take place," says O'Brien.
But there are three main ways to combat these
symptoms, experts say: taking time to care for yourself; honing
your skills as a caregiver to make the job easier; and learning
how to ask for help.
It is crucial that caregivers be sure to take
time out for themselves, or they risk burning out or potentially
harming the person they care for through frustration or neglect.
"You need to take care of yourself first," says
O'Brien. "If you don't care for yourself, you can't take care of
someone else."
Caring for yourself can be as simple as taking
five minutes out of your day to do a pleasurable activity, says
Jeff Loomis, associate director at the University of Florida Center
for Telehealth.
"They can listen to their favorite song, they
can go outside and smell the fresh air," notes Loomis. "How effective
is a caregiver running on empty? If they can find a way to recharge
their batteries, they'll be better able to get back in the fight."
Most communities offer adult day-care services
that will look after Alzheimer's patients for several hours, while
caregivers can take the opportunity to relax or run needed errands.
Caregivers also can help themselves by using
support systems, groups, and Web sites to get better at looking
after their loved one.
"I'm a firm believer that respite care in and
of itself does not solve the problem," explains Loomis. "Learning
to do a task better, differently, can remove the stressors in their
lives and perhaps free them up to do other things."
Improving your care-giving skills first means
learning all about Alzheimer's, and the stages that your loved one
will go through so you can anticipate problems.
"This is a progressive disease," remarks O'Brien. "The
kind of care that someone needs is going to change over time, and
is unique to every person."
After that, a person can work on improving specific
skills. Training and coping skills come in handy for tasks as basic
as giving a bath to a loved one, Loomis says.
Caregivers also need to remember to "share the
care," O'Brien says. "That means asking for help, either with helping
in the care or helping you. They could run an errand for you, go
grocery shopping, help clean around the house."
When asking for help, caregivers must be specific.
"So many times, people will generically say,
'Let me know if I can help,'" says O'Brien. "The caregiver needs
to say what help they need. It's very important that the caregiver
learn how to ask, and friends and family learn how to help. It's
a relationship."
Finally, and most important, caregivers must
give themselves the benefit of the doubt.
"Sometimes it just helps to know at the end of
the day you did your best, and next day you'll be back fighting
the good fight," says Loomis.
Always consult your physician for more information.
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Alzheimer’s
disease is a degenerative disease of
the brain that causes a gradual loss
of memory, judgment, and ability to
function socially.
According to the Centers
for Disease Control and Prevention
(CDC), it is the 11th leading
cause of death for adults aged 65
and older. While the cause of Alzheimer’s
disease still is uncertain, researchers
agree that the risk of developing
the condition increases as a person
ages.
The disease is progressive,
and often results in the following:
- impaired memory, thinking, and
behavior
- confusion
- restlessness
- personality and behavior changes
- impaired judgment
- impaired communication
- inability to follow directions
- language deterioration
- impaired visuospatial (relating
to visual perception of spatial relationships
among objects) skills
- emotional apathy
Although there is
currently no cure for Alzheimer’s,
the Alzheimer's
Association states that new
treatments are on the horizon as a
result of accelerating insight into
the biology of the disease.
Research has also
shown that effective care and support
can improve quality of life for individuals
and their caregivers over the course
of the disease from diagnosis to the
end of life.
Alzheimer’s
is the most common form of dementia,
a group of conditions that all gradually
destroy brain cells and lead to progressive
decline in mental function.
Vascular dementia,
another common form, results from reduced
blood flow to the brain’s nerve
cells. In some cases, Alzheimer’s
disease and vascular dementia can occur
together in a condition called "mixed
dementia."
Alzheimer’s
disease advances at widely different
rates, states the Alzheimer's
Association.
The duration of
the illness may often vary from three
to 20 years. The areas of the brain
that control memory and thinking skills
are affected first, but as the disease
progresses, cells die in other regions
of the brain.
Eventually, the
person with Alzheimer’s will
need complete care. If the individual
has no other serious illness, the loss
of brain function itself will cause
death.
The Alzheimer's
Association is working to
improve the lives of patients as
well as to find a way to prevent
the disease in the first place. Some
of the progress includes:
- Improved diagnostic tools that
are helping providers to diagnose
with more than 90 percent accuracy.
- Identification of genes that may
put people at increased risk for
the disease.
- A worldwide network of investigators
and research centers involved in
intensive studies on multiple fronts,
including basic sciences, genetics,
interventions, psychosocial issues,
and caregiving strategies for diverse
populations.
- Critical research systems in place
that support and coordinate clinical
studies, and brain banks and cell
repositories to facilitate sharing
of donated tissues and genetic data
- all to find answers faster, cheaper,
and better.
- Five FDA-approved drug treatments
and additional medications in the
pipeline.
- New commercial applications of
technology to provide greater independence
and quality of life for those with
Alzheimer’s disease.
- Increased knowledge of what can
be done to prevent or delay dementia.
Always consult your
physician for a diagnosis.
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