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American Society on Aging
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CDC BACKGROUNDER
Epilepsy Among Older Adults: Underdiagnosed and Undertreated
March 20, 2006
MEDIA CONTACTS:
At ASA: Paul Kleyman, (415) 974-9619
paul@asaging.org
At CDC: Jason Lang, (770) 488-5597
jlang@cdc.gov
At CDC Health Care and Aging Studies Branch:
Patricia Price, (770) 488-5502
Rosemarie Kobau, (770) 488-6087
Epilepsy is probably not what you think it is, especially
when older adults have it. Epilepsy is beset by myths.
Consider the following:
Myth: Only children and young adults get epilepsy.
Fact: The segment of the population with the
fastest growing incidence of epilepsy is older adults.
Myth: Epilepsy always causes dramatic seizures.
Fact: The symptoms of seizures in older adults can
be subtle and are often missed.
Myth: Put a spoon in the mouth of someone having a
seizure so they won't swallow their tongue.
Fact:
Never put anything in the mouth of a person having a
seizure, and never restrain them.
Myth: Seizures are contagious or caused by spirits.
Fact: Epilepsy is a neurological disorder. It is
not contagious, not caused by spirits and not to be
feared.
Epilepsy experts and advocates have worked tirelessly to
dispel common myths about this disease but sadly they
persist. The misinformation is compounded by the fact that
the term "epilepsy" unfortunately evokes stereotypes,
fears, and discomfort in many people.
Epilepsy is a serious matter. If left untreated it can
cause major quality-of-life problems, lead to loss of
independence and can even result in death in rare cases.
Institutionalization can occur when epilepsy goes
undiagnosed and the resultant confusion or dementia leads
to a nursing home placement, Patricia H. Price, M.S.,
D.O., coordinator of the Epilepsy Program at the Centers
for Disease Control and Prevention (CDC), explained. This
is terribly unfortunate for these patients, "when in fact
if they were treated, they might be able to live on their
own," she said.
Thus, reaching out to older adults with epilepsy and to
the people who care for them is a key concern for the
public health and medical communities. Their primary goals
are to increase public awareness of the problem, and to
ensure proper diagnosis and treatment that brings seizures
under control.
Prevalence. Nationwide, more than a half million
older adults have been diagnosed with epilepsy, and they
are the population with the most rapidly growing incidence
of epilepsy (Epilepsia, 2000, Begley). "That is a
considerable change from the past when most doctors
thought of epilepsy as a childhood problem that you may or
may not outgrow," explained Dr. Steven C. Schachter, M.D.,
a Harvard Medical School professor and neurologist at the
Beth Israel Deaconess Medical Center Comprehensive
Epilepsy Center. One estimate is that, by the year 2020,
one half of patients with epilepsy will be over age 65,
Dr. Schachter said.
Research shows that since the 1980s, the incidence of new-
onset epilepsy has increased among older people, said Tess
Sierzant, R.N., M.S., a neuroscience nurse with the
HealthEast Care System at St. Joseph's Hospital, St. Paul,
Minn. Scientists are still trying to find out why,
although part of the reason is clearly the growth in the
number of older adults and associated risk factors, such
as stroke and falls, which are more common in older adults
and increase the risk for seizures.
Symptoms. Most people believe epilepsy always
causes dramatic convulsions or leads to something very
traumatic, Dr. Schachter noted. "Ninety percent of the
time seizures are presented that way on television." In
fact, the symptoms of epilepsy -- strange feelings, memory
blanks, subtle behavioral changes, an unaccountable loss
of time, staring, temporary confusion or seizures -- might
be milder in older adults than younger adults. Epilepsy
among older adults is often mistaken for another
condition, such as dementia, stroke, heart disease,
transient amnesia, or dismissed as a component of aging,
Dr. Schachter explained.
First Aid. Drastic first aid measures are not
needed. Putting something in the mouth of a person who is
having a seizure or restraining the person is not
necessary and could cause harm. The concern
about "swallowing one's tongue" during a seizure is simply
not valid. (For more on first aid, see the "Resources"
section.)
Cause. Epilepsy is a neurological disorder producing
recurrent, brief electrical changes in brain cells. A
seizure results from this excessive surge of electrical
activity in the brain, and it can temporarily change how
the person feels, senses or behaves.
THE STATISTICS OF EPILEPSY
Long misunderstood and associated with an unfair stigma
for those who have it, epilepsy has been chronicled among
humans for at least 5,000 years. Epilepsy is not a single
disease, but rather a family of more than 40 syndromes.
The different types of epilepsy stem from the specific
part of the brain that is affected by the electrical
disturbances. Patients may experience just one type or
several types.
An estimated 570,000 adults age 65 and older are among the
2.7 million people in the United States with epilepsy
(
Epilepsia, 2000, Begley). The overall cost of
epilepsy is $15.5 billion a year in health care and
economic losses related to employment, wages, and
productivity (
Epilepsia, 2000, Begley).
The prevalence of epilepsy tends to increase with age -- 3
percent of the American population will develop epilepsy
by age 75, according to the Epilepsy Foundation. By age
85, about 4 percent will have developed epilepsy and 10
percent will have had at least one seizure (
Mayo Clinic
Proceedings, 1996, Hauser).
Men are slightly more likely than women to get epilepsy,
and the incidence of epilepsy is higher among African
American and socially disadvantaged populations than other
groups.
EPILEPSY AMONG OLDER ADULTS
"The average person believes epilepsy
always causes dramatic
convulsions or leads to something very traumatic. But in
fact,
epilepsy can cause subtle behavioral changes." -- Dr.
Steve Schachter
The following two scenarios show the wide range of
epilepsy-related outcomes, and the importance of
appropriate medical care for epilepsy.
Case A: A 72-year-old woman with a history of
prior heart attacks and a mild stroke a year ago goes to
her neurologist after two episodes of shaking of the right
arm. An EEG supported the diagnosis of epilepsy. The
patient is prescribed a low dose of a seizure medication
and has no further seizures.
Case B: A 70-year-old man has intermittent
confusion and memory loss for three years, which his
family attributes to aging and mild dementia. They do not
seek medical attention. The man is found convulsing by his
daughter, is brought to the hospital emergency department
continuing to convulse. He is diagnosed with status
epilepticus (non-stop seizures) and, despite all intensive
efforts, dies two days later.
While it is rare for a person with epilepsy to die from a
seizure, Dr. Schachter and other experts emphasize that
mild symptoms should not be ignored. "The message is that
intermittent confusion or memory loss could be an
indication of a seizure disorder," Dr. Schachter said.
Failure to seek medical attention and get a definitive
diagnosis might lead to a future seizure that is more
dramatic or life-threatening. If the male patient (Case B)
had been treated earlier, he may not have gone into status
epilepticus and died, Dr. Schachter explained.
Since the presentation and outcomes of seizures may be
different for older adults than for younger patients, they
may respond differently to diagnostic methods and
treatments, CDC says.
Seizures look different in older adults primarily because
the brain changes with age, Dr. Schachter explained. In
addition, "the recovery phase, or what we call the
postictal period, appears to be significantly longer in
this age group as well." Some doctors believe the recovery
phase for older adults may last days or weeks, as opposed
to a few hours for younger people. More research is needed
in this area.
Why Epilepsy Is Increasing Among Elders. There are
several reasons why older adults are the most rapidly
growing population with epilepsy. "First, we have the
bubble of the baby boomers, so just the sheer numbers is a
contributing factor" to the rising epilepsy rate among
older adults, Sierzant said. Second, epilepsy often
accompanies conditions that are more common among older
adults -- stroke, brain tumor, cancer, falls, and
traumatic brain injury.
Another factor may be that increased awareness has led to
better recognition.
Relationship between Epilepsy and Other Conditions.
The Epilepsy Foundation estimates that epilepsy can be
expected to develop in 22 percent of stroke patients and
10 percent of Alzheimer's disease patients. "For
symptomatic epilepsy -- people with associated or known
comorbid conditions -- stroke is the biggest link to new
onset epilepsy," Sierzant said. "The more you age, the
higher the risk becomes," she added.
A long-term Department of Veterans Affairs study at
multiple VA centers of nearly 600 patients over the age of
60 found that the most common cause of seizures among this
group was cerebrovascular disease (
Epilepsia, 2003,
Ramsay). The VA study also found older people are more
likely to have other disorders (e.g., dyslipidemia,
hypertension, dementia and diabetes) that may increase
their risk of seizures.
The fact that older adults tend to take more medications
than young people increases their risk for adverse
medication interactions and complicates treatment of
epilepsy.
One-third to one-half of seizures among the elderly are
considered idiopathic, meaning there is no known
cause.
QUALITY OF LIFE ISSUES
"Depression affects the quality of
life for people with epilepsy …
that is why it is important to understand how prevalent
depression is in this age group as well." -- Dr. Steve
Schachter
Quality-of-life issues for older adults with epilepsy are
not unlike those for younger people: driving restrictions,
employment difficulties, social embarrassment, depression
and safety issues, according to recent research by the
University of Alabama, Birmingham, Epilepsy Center, which
was supported by a CDC grant.
However, older adults do differ from younger patients when
it comes to medication concerns. A survey of a small
sample (33 older adults) found that 64 percent reported
medication side effects (
Epilepsy & Behavior, 2005,
Martin). In addition, 21 percent also cited memory loss as
a top worry. The survey found 28 areas of concern for
older adults with epilepsy. The study highlighted the need
to identify a patient's quality-of-life concerns "to more
effectively measure and track changes in these concerns
during the patient's treatment course."
In its 2004 annual report, the Epilepsy Foundation says
that researchers are looking into whether prolonged or
frequent seizures can lead to memory loss and cognitive
difficulties. The longer postictal recovery period
believed to be experienced by older persons clearly has
quality-of-life implications as well.
Independence. For older adults, epilepsy may also
mean loss of independence, fear, and stigma. Over-
solicitous friends and family may not be comfortable
leaving the older adult with epilepsy alone, fearing
possible injury from a seizure. Like most people with
epilepsy, older adults with epilepsy worry about the
embarrassment or danger of having a seizure in public.
Loss of independence also may bring about depression and
other mood disorders, which themselves may need medical
attention.
"Socializing may also be difficult for older people with
epilepsy," said CDC's Dr. Price. "Research indicates that
the side effects of medication and the need for plenty of
rest may restrict their ability to socialize."
Seizures may cause falls with detrimental outcomes or
other injuries that may reduce a person's mobility and
independence (
Treatment of Epilepsy, 1996, Tallis).
Falls often lead to the need for institutionalization
(
New England Journal of Medicine, 1997,
Tinnetti).
Driving. Older adults whose seizures are not under
control will lose their license to drive. "Losing driving
privileges to a 70-year-old brings about the potential for
increasing dependency on others," Dr. Schachter
explained. "It may really be devastating to their quality
of life to lose their license to drive," commented James
S. Grisolia, M.D., a practicing neurologist with an
interest in epilepsy at Scripps Mercy Hospital, San Diego.
He chairs the Health Services Workgroup within the Older
California Traffic Safety Taskforce (a committee of the
California Highway Patrol). For someone who is unable to
drive, transportation becomes an access-to-care issue,
especially in rural areas and in communities with poor
public transit options.
Stigma. "Stigma and misinformation are still major
problems for epilepsy," Dr. Price said. "So is making
light of the issue, which sends negative messages about
epilepsy." A 2005 survey by the Epilepsy Foundation (EF)
showed that some people falsely believe that epilepsy is
caused by spirits or that it is contagious. The EF is
working to overcome negative attitudes about epilepsy.
This is especially important for the older population,
because stigma is even more pronounced among that
generation of Americans, Sierzant said. That view can be
changed as the baby boomers age and perhaps become more
open to talking about seizures. But today's older adults,
who may continue to feel uncomfortable talking to their
family and friends about their epilepsy, may be able to
improve their quality of life by "opening up through the
confidential physician-patient relationship," she
suggested.
Working adults may face discrimination in the workplace,
which adds to their feelings of stigma and depression.
Workplace discrimination against people with epilepsy is
such a concern that the U.S. Equal Employment Opportunity
Commission (EEOC) recently addressed this issue. (To see
EEOC's report, go to
www.eeoc.gov/facts/epilepsy.html.) EEOC notes that
many employers wrongly assume that people with epilepsy
should automatically be excluded from certain jobs.
BARRIERS TO CARE
"There is a tendency to dismiss
symptoms with,
'Oh, she's having a senior moment'
or 'She's just getting old'." -- Tess
Sierzant
A key barrier to care is the failure of some physicians to
recognize the symptoms of epilepsy in an older patient.
Access to proper medical care also depends on whether the
person has insurance, whether their primary care physician
refers them to a neurologist or epileptologist, and
whether the patient can afford treatment and prescription
drugs.
Medical professionals need more education and awareness
about epilepsy in the elderly, including diagnosis and
treatment, Sierzant added. A survey of 220 health
professionals, conducted for the Epilepsy Foundation by
Boston Healthcare Associates Inc., was released in
2005. "It gave us some good insight into what health
professionals need to know in thinking about a diagnosis
of epilepsy and what strategies are most effective in
treating epilepsy in older adults," Sierzant said.
The survey showed that many primary care practitioners and
general neurologists do not have much awareness about the
particular features of epilepsy in older adults, said Dr.
Grisolia, who co-chairs the foundation's Seniors and
Seizures Initiative Advocacy Workgroup. For example, a
large number of primary care doctors said they regularly
prescribe an older drug, Dilantin, for epilepsy patients.
Yet there are many newer agents that are better tolerated
by older patients, especially those who are on multiple
medications.
The survey also showed that primary care doctors do not
always refer all their older patients suspected of having
epilepsy to a neurologist for evaluation.
"It may actually take years for some patients to get a
proper diagnosis and treatment," Dr. Price said.
The very nature of seizures in older adults is itself a
barrier to care. Among older adults, "a greater percentage
of seizures are what we call 'complex partial seizures,'
with symptoms like being spaced out, wandering around in
the street, or not knowing where they are," Sierzant said.
This subtlety of symptoms, combined with other conditions
that are occurring in the aging brain, make diagnosis more
difficult.
Another barrier is the limitation of current diagnostic
tools for older adults. "The EEG is apparently less
sensitive in the elderly for picking up the conditions
that give rise to seizures and we'd like to know why, and
what to do about it, to make this very safe and
inexpensive test more effective for the elderly patient,"
explained Thomas Henry, M.D., professor of neurology at
Emory University School of Medicine. Researchers need to
develop more sophisticated ways of interpreting and
analyzing EEGs and MRIs of the aging brain, Dr. Henry
said. Basic science research with aging animal models may
also lead to better diagnosis and treatment for human
patients. An Epilepsy Foundation workgroup, which Dr.
Henry chairs, has developed a strategy for getting some of
these research projects started, and is looking for small
grant funding, he said.
Barriers to care for older adults also include living
alone. People who live alone have no one to observe that
they have seizures, and an older adult may have limited
memory or observational skills, Dr. Schachter
explained.
CDC AND PARTNERS WORK ON SOLUTIONS
Priority objectives for CDC's Epilepsy Program are to
improve the care and quality of life of people with
epilepsy, encourage self-management of the disease, combat
stigma by increasing the public's awareness and knowledge
of the disease, conduct surveillance and prevention
research, analyze trends, and strengthen partnerships.
CDC's key messages to the public are:
- Most people with epilepsy can be independent and live
normal lives.
- Epilepsy is not a form of mental illness or mental
retardation.
- People with epilepsy can be valuable and productive
employees.
- Seizures are not something to fear.
- Drastic first aid measures are not usually necessary.
Recommendations from conferences cosponsored by CDC and
its epilepsy partners included establishing criteria for
quality care, finding models of care that empower people
with epilepsy to remain independent and have a better
quality of life, increasing awareness and educating the
public about epilepsy, conducting enhanced surveillance
and epidemiologic studies of persons with epilepsy, and
improving access to epilepsy specialists and comprehensive
systems of epilepsy care (
Living Well with Epilepsy II:
Report of the 2003 National Conference on Public Health
and Epilepsy Priorities for a Public Health Agenda on
Epilepsy). CDC is funding a project to develop
criteria to assess the quality of care and determine best
practices for treating adults diagnosed with epilepsy. CDC
supports Prevention Research Centers to conduct research
to implement and evaluate self-management interventions
for people with epilepsy. It is supporting population-
based epidemiologic studies to define the incidence and
prevalence of epilepsy in diverse populations in the U.S.,
including potentially underserved communities, to define
risk factors and severity of epilepsy in these
communities; and to identify health disparities and the
factors contributing to them among people with epilepsy.
CDC developed a survey research tool to assess perceptions
and knowledge about people with epilepsy in the U.S.
population. It has completed work with state chronic
disease directors on a project to examine the role of
states in addressing public health issues related to lower-
prevalence chronic conditions, using epilepsy as a model
(
The Role of Public Health in Addressing Lower
Prevalence Chronic Conditions: The Example of
Epilepsy, July 2003).
Partnership with Epilepsy Foundation. CDC's major
epilepsy partner is the Epilepsy Foundation. CDC has an
ongoing cooperative agreement with the foundation to
address issues related to education, awareness, and
stigma. Recent foundation activities have included the
launch of its Seniors & Seizures Initiative, which is co-
chaired by Dr. Schachter and Sierzant. The purpose of the
initiative is to develop and implement action plans to
address the research, advocacy and education needs of
older adults with epilepsy. As part of this initiative,
the Epilepsy Foundation worked with the journal
Geriatrics, to develop a series (October-December
2005) of epilepsy articles "to provide primary care
physicians with specific information on epilepsy and
seniors; co-morbidities; and treatment options in older
adults," explained Tennille G. Brown, M.H.A., with the
foundation. Peer education focuses on primary care
providers, clinics and geriatricians who are "the front
line for treating epilepsy," added Art Taggart, executive
director of the Epilepsy Foundation of South Central
Wisconsin.
By reaching out to older adults, the Seniors & Seizures
Initiative hopes to break through attitudes that keep
seniors from seeking medical treatment, Dr. Schachter
said. The foundation is developing a single booklet that
can provide basic information for older patients, their
families, doctors and nurses, Brown said.
To improve the understanding of epilepsy in the Latino
community, CDC and the Epilepsy Foundation have partnered
to reach out to the Hispanic community through Hispanic
Radio Network, local affiliates of the National Council of
La Raza, and local groups of the Community Health Workers
("Promotoras") National Network.
To reach professionals, the foundation is updating its
online E-learning program for primary care doctors. The
foundation also is developing a training curriculum on
first responder seizure recognition and management that
will include two modules -- an updated police curriculum
and an emergency responder's curriculum. "The Epilepsy
Foundation also is leading the way in identifying research
needs, awarding grants, and stimulating research to
ultimately improve the care of patients," Dr. Schachter
said.
TREATMENT ISSUES
Anti-epileptic drugs (AEDs) are the most common form of
treatment. Other forms of treatment include vagus nerve
stimulation and surgery and, for a few types of epilepsy,
a special diet.
It is important to educate seniors and their families to
ask questions about their treatment and to advocate for
their own needs, including discussing medication side
effects with their physicians. "If the initial treatment
physician is unsuccessful in stopping the episodes, even
if the episodes themselves seem to be mild, then they
should go to a consultant, or request a referral to a
consultant, because the goal is to stop the seizures
without significant side effects from medications." Dr.
Schachter said. "The good news is that is achievable in
the vast majority of individuals."
Drug Research. The normal physiological changes
associated with aging can alter the way drugs work, and
the multiple medications that older adults take can raise
the risk of potential drug interactions. A recent study,
involving 600 older veterans, was one of the first to
examine which epilepsy drugs work best and which AEDs
cause adverse reactions (
Neurology, 2005, Rowan).
Ongoing research by James Cloyd, Pharm.D., associate dean
of research at the University of Minnesota College of
Pharmacy, is looking at how age, race, gender and genes
affect the way older adults absorb and metabolize AEDs. An
earlier survey of nursing home residents found about 10
percent are on an AED and also taking an average of 5.6
medications (
Epilepsia, 1998, Lackner). Recent
research by Roy Martin, Ph.D., from the University of
Alabama at Birmingham Epilepsy Center indicates that
taking more than one AED may increase the risk for
cognitive dysfunction (
Epilepsy & Behavior, 2005,
Martin). Therefore, there is a delicate balance between
providing sufficient treatment to control seizures, and
risking side effects and drug interactions. More research
is needed in these areas, experts agree.
Medicare Prescription Drug Benefit. Epilepsy
experts hope that older adults with epilepsy will have
better access to the medications they need under the new
Medicare Part D prescription drug program that went into
effect January 1, 2006. The foundation worked with the
Centers for Medicare and Medicaid Services (CMS) to move
anti-convulsant drugs to a protected list of drugs for
which "all or substantially all" classes of these
medications must be made available. "This shows that CMS
really got the message about how important it is for
people with epilepsy to really have access to the right
medicine," Dr. Grisolia of Scripps Mercy Hospital in San
Diego said. "This should help ensure that many of the
newer anti-epileptic drugs are covered," he added.
But, even though most epilepsy medications are supposed to
be available under Medicare drug plans, "it remains to be
seen what kind of barriers the plans will put in the way,
in terms of higher copays, special permissions, and
getting approval from the medical director," Dr. Grisolia
pointed out.
Donna Meltzer, director of government relations at the
Epilepsy Foundation, agreed there could be difficulties
with certain drugs, such as benzodiazepines, which are to
be covered by Medicare drug plans for people with a
diagnosis of seizures, but not for other diagnoses. "We
are waiting to see how the drug plan shakes out and what
is going to happen," she said.
Restrictions on benzodiazepine coverage could have a
particular impact on nursing home residents. Drug
utilization studies show that long-term care facilities
more frequently use Klonopin (clonazepam), a
benzodiazepine that is more often prescribed by the
medical director than a neurologist. So if these drugs are
not covered by the new formulary, "then that is an issue
that is going to have to be dealt with in the nursing
home," Dr. Schachter noted. Some benzodiazepines are
prohibitively costly for patients without insurance, he
added.
Self-Management. Self-management is a key component
of treating epilepsy. Rosemarie Kobau, M.P.H., a
behavioral scientist and public health advisor with CDC's
Epilepsy Program, defined self-management as "anything a
person does to control the disorder and the effects of
epilepsy on his or her life." The most important component
is medication management and adherence to the prescribed
regimen, "which is critical for seizure control," Kobau
noted. General lifestyle management includes getting
enough sleep, eating a healthy diet, seeing the doctor
regularly, and avoiding alcohol and drugs.
CDC funded a program at Emory University's Rollins School
of Public Health to develop a computer-based self-
management intervention that can be used at home by adults
with epilepsy. "Use of computers and the Internet will
help us reach many people with epilepsy who cannot drive
because of uncontrolled seizures, or who have limited
access to public transportation," Kobau added.
Some people who have epilepsy learn to recognize certain
things that affect their seizures. Recognizing and
avoiding "seizure triggers," such as flashing lights or
missing sleep, is a key aspect of self-management. "People
learn to recognize their triggers and avoid them," Kobau
said, adding that not all patients have triggers they can
watch for.
LOOKING TO THE FUTURE: IMPROVING QUALITY OF LIFE
Experts agree that the number of cases among older persons
will continue to rise as the baby boom generation reaches
retirement age.
The goal for CDC and epilepsy organizations is to improve
the quality of life for older adults with epilepsy. Toward
that end, they seek to increase awareness about seniors
and seizures, dispel the myths and stigma, and ensure that
more older people are receiving the newest treatments so
that their seizures are controlled as well as possible.
Bringing epilepsy "out of the closet" will help ensure
that seniors have access to the very best epilepsy
treatment, Taggart said.
Future research needs to focus on looking at the nature of
seizures in older adults, developing guidelines for
treatment regimens, and examining psychosocial
aspects.
Research also is needed on factors that may be related to
epilepsy, such as depression. Epidemiologic research
suggests depression is a risk factor for epilepsy, but
more work needs to be done on older adults, Dr. Schachter
said. "We do know that depression affects the quality of
life for people with epilepsy, more so than the seizures,
at least for younger adults and that is why it is
important to understand how prevalent depression is in
this age group as well."
This media background paper was written by Nancy
Aldrich. William F. Benson was senior editor and project
manager.
STORY IDEAS FOR JOURNALISTS
1)
Patient Stories. Contact local chapters of the
Epilepsy Foundation and other organizations to find older
adults with epilepsy in your community whom you can
interview and profile. Stress the unique problems of
epilepsy for older adults, and the fact that while it is
harder to diagnose, epilepsy usually can be controlled in
older adults. Focus on the complications of diagnosis and
treatment for older people, barriers to care, and local
care and support services for people with epilepsy.
Portray how people with epilepsy struggle to get medical
treatment and gain control of their seizures; how they
face issues such as loss of a driving license, loss of a
job, problems getting insured; and how they learn to get
on with their lives despite the problems they must deal
with. Many patient stories are online. (For example, see
www.mayoclinic.org/neurology-
sct/patientstories.html.)
2)
Myths. Try to dispel the myths about epilepsy.
Explain that minor symptoms that people tend to ignore
might lead to serious illness if left untreated. Motivate
older people to seek treatment. Many older adults approach
epilepsy from the point of view that it is not something
to talk about, that it best kept hidden, and that it can't
lead to anything serious. "I think presenting the
information in a way that encourages individuals to seek
appropriate medical care is really key," Dr. Schachter
advises journalists.
3)
Stigma. Write in a way that avoids dramatizing
seizures and spreading misinformation that adds to the
stigma of epilepsy, Taggart advises. "The way we write
about it can help to break through those stigmas, or
conversely inadvertently perpetuate them," Dr. Schachter
says. He suggests referring to a "person with epilepsy,"
not "an epileptic." He also suggests writing about
controlling the seizures rather than controlling the
person. Taggart explained that use of certain language "in
small ways does contribute to the stigma and myths
surrounding epilepsy."
4)
Emergency Response. The Epilepsy Foundation's
website shows tragic examples of people who are having
seizures being arrested, handcuffed, put in a strait-
jacket, violently restrained or otherwise receiving
inappropriate treatment from emergency officials. Some
people died while being restrained. Find out if your local
emergency medical teams and law enforcement personnel are
trained to reduce the risk of injury or a fatality when
responding to someone who is having a seizure or who is
acting strangely. (The National Association of EMS
Physicians has a position paper stating that all EMS
systems should minimize the use of restraints. Go to:
www.naemsp.org/positionpapers.asp.) Check on your
area's local regulations on the use of restraints by first
responders.
5)
Bystander First Aid. Educate your readers about
the proper first aid response for bystanders to an older
adult who is having a seizure. (See: Epilepsy
Foundation's "Handling Convulsions in an Older Person,"
www.epilepsyfoundation.org/answerplace/Life/elderly/late
rrespond.cfm.)
6)
Medicare Drug Plans. Find out if local Medicare
Part D prescription drug plans give seniors access to all
epilepsy medications. Do the plans create barriers such as
requiring prior authorization? Find out if plans cover
medications that nursing home patients need for
epilepsy.
# # #
RESOURCES FOR REPORTERS
- Centers for Disease Control and Prevention
Epilepsy Program, www.cdc.gov/epilepsy. Frequently
Asked Questions, www.cdc.gov/epilepsy/faqs.htm.
Epilepsy publications,
www.cdc.gov/epilepsy/publications.htm. Epilepsy
Program Coordinator Dr. Patricia Price, (770) 488-5502,
patricia.price@cdc.hhs.gov. Behavioral Scientist
for Epilepsy Program Rosemarie Kobau, (770) 488-6087,
rmk4@cdc.gov.
- American Epilepsy Society,
www.aesnet.org, (860) 586-7505. Media contact:
Christer E. Osterling, Director of Communications, (860)
586-7505, ext. 560, costerling@aesnet.org.
- Epilepsy Foundation,
www.epilepsyfoundation.org/answerplace/Life/elderly,
(800) 332-1000 or (301) 459-3700. Media contacts:
Kimberli Meadows, (301) 918-3747, kmeadows@efa.org;
or Jonese Holloway, (301) 918-3768,
jholloway@efa.org. Spanish: (866) 748-8008 or
www.epilepsyfoundation.org/iniciativa/. Media
website:
www.epilepsyfoundation.org/aboutus/pressroom/index.cfm.
- Epilepsy Foundation South Central Wisconsin,
www.epilepsyfoundation.org/socentralwisc/, Art
Taggart, executive director, (608) 442-5555,
ataggart@wisc.edu.
- Epilepsy Therapy Development Project,
www.Epilepsy.com, (703) 437-4250,
EpilepsyCure@aol.com. Media center:
www.epilepsytdp.org/sec/media. Webpage for seniors:
www.epilepsy.com/info/seniors.html.
- National Association of Epilepsy Centers,
www.naecepilepsy.org, (612) 525-4526.
- National Institute of Neurological Disorders and
Stroke epilepsy website,
www.ninds.nih.gov/disorders/epilepsy/epilepsy.htm.
Epilepsy Research,
www.ninds.nih.gov/funding/research/epilepsyweb/benchmark
s.htm.
- National Library of Medicine,
www.nlm.nih.gov/medlineplus/epilepsy.html.
Publications:
- Background: Inappropriate Response to Seizures,
www.epilepsyfoundation.org/epilepsylegal/inappropriaterespo
nse.cfm
- First Aid for Seizures:
www.epilepsyfoundation.org/answerplace/Medical/firstaid/ind
ex.cfm
- Handling Convulsions in an Older Person,
www.epilepsyfoundation.org/answerplace/Life/elderly/laterre
spond.cfm
- Living Well with Epilepsy II: Report of the 2003
National Conference on Public Health and Epilepsy,
www.cdc.gov/Epilepsy/pdfs/living_well_2003.pdf
- Most Frequently Asked Questions About Epilepsy,
www.epilepsyfoundation.org/answerplace/faq.cfm
- The Role of Public Health in Addressing Lower
Prevalence Chronic Conditions: The Example of
Epilepsy,
www.chronicdisease.org/Publications_Reports_New/epilepsy_re
port.pdf
- Seizures and Epilepsy: Hope Through Research,
www.ninds.nih.gov/disorders/epilepsy/detail_epilepsy.htm
(Spanish version,
www.ninds.nih.gov/disorders/spanish/crisis_epilepticas.htm)
- Treatment Guidelines for Epilepsy Evaluate
Antiepileptic Drugs (American Academy of Neurology and
American Epilepsy Society),
www.aesnet.org/visitors/about/Pressroom/AES-
AANGuidelines.zip
- Twelve Key Points to Remember for an Effective
Response to Seizures,
www.epilepsyfoundation.org/answerplace/Medical/firstaid/fir
stresponder.cfm
Medical Experts Cited:
- James S. Grisolia, Scripps Mercy Hospital, San Diego,
(619) 297-1155, jsgris@pol.net
- Steven C. Schachter, Beth Israel Deaconess Medical
Center, Boston, (617) 667-4460,
sschacht@caregroup.harvard.edu
- Tess Sierzant, St. Joseph's Hospital, St. Paul, (651)
326-3415, tlsierzant@healtheast.org
- Thomas Henry, Emory University School of Medicine,
Atlanta, (404) 778-5943, thenr01@emory.edu
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