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Help for Patients & Caregivers
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Help for Patients and Caregivers : Sleep Apnea
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What is Sleep Apnea?
Who Gets Sleep Apnea?
What Causes Sleep Apnea?
How is Normal Breathing Restored During Sleep?
What are the Effects of Sleep Apnea?
When Should Sleep Apnea be Suspected?
How is Sleep Apnea Diagnosed?
How is Sleep Apnea Treated?
For More Information
WHAT IS SLEEP APNEA?
Sleep apnea is a serious, potentially lifethreatening
condition that is far more common
than generally understood. First
described in 1965, sleep apnea is a breathing
disorder characterized by brief interruptions
of breathing during sleep. It owes its name
to a Greek word, apnea, meaning “want of
breath.” There are two types of sleep apnea:
central and obstructive. Central sleep
apnea, which is less common, occurs when
the brain fails to send the appropriate signals
to the breathing muscles to initiate respirations.
Obstructive sleep apnea is far
more common and occurs when air cannot
flow into or out of the person’s nose or
mouth although efforts to breathe continue.
In a given night, the number of involuntary
breathing pauses or “apneic events” may be
as high as 20 to 30 or more per hour. These
breathing pauses are almost always accompanied
by snoring between apnea episodes,
although not everyone who snores has this
condition. Sleep apnea can also be characterized
by choking sensations. The frequent
interruptions of deep, restorative sleep often
lead to early morning headaches and excessive
daytime sleepiness.
Early recognition and treatment of sleep
apnea is important because it may be associated
with irregular heartbeat, high blood
pressure, heart attack, and stroke.
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WHO GETS SLEEP APNEA?
Sleep apnea occurs in all age groups and
both sexes but is more common in men (it
may be underdiagnosed in women) and possibly
young African Americans. It has been
estimated that as many as 18 million
Americans have sleep apnea. Four percent
of middle-aged men and 2 percent of middle-
aged women have sleep apnea along
with excessive daytime sleepiness. People
most likely to have or develop sleep apnea
include those who snore loudly and also are
overweight, or have high blood pressure, or
have some physical abnormality in the nose,
throat, or other parts of the upper airway.
Sleep apnea seems to run in some families,
suggesting a possible genetic basis.
WHAT CAUSES SLEEP APNEA?
Certain mechanical and structural problems
in the airway cause the interruptions in
breathing during sleep. In some people,
apnea occurs when the throat muscles and
tongue relax during sleep and partially block
the opening  of the airway. When the muscles
of the soft palate at the base of the
tongue and the uvula (the small fleshy tissue
hanging from the center of the back of the
throat) relax and sag, the airway becomes
blocked, making breathing labored and
noisy and even stopping it altogether. Sleep
apnea also can occur in obese people when
an excess amount of tissue in the airway causes it to be narrowed. With a
narrowed airway, the person continues
his or her efforts to breathe, but
air cannot easily flow into or out of
the nose or mouth. Unknown to the
person, this results in heavy snoring,
periods of no breathing, and frequent
arousals (causing abrupt changes
from deep sleep to light sleep).
Ingestion of alcohol and sleeping
pills increases the frequency and
duration of breathing pauses in people
with sleep apnea.
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HOW IS NORMAL BREATHING
RESTORED DURING SLEEP?
During the apneic event, the person
is unable to breathe in oxygen and to
exhale carbon dioxide, resulting in
low levels of oxygen and increased
levels of carbon dioxide in the blood.
The reduction in oxygen and increase
in carbon dioxide alert the brain to
resume breathing and cause an
arousal. With each arousal, a signal
is sent from the brain to the upper
airway muscles to open the airway;
breathing is resumed, often with a
loud snort or gasp. Frequent
arousals, although necessary for
breathing to restart, prevent the
patient from getting enough restorative,
deep sleep.
WHAT ARE THE EFFECTS OF
SLEEP APNEA?
Because of the serious disturbances
in their normal sleep patterns, people
with sleep apnea often feel very
sleepy during the day and their concentration
and daytime performance
suffer. The consequences of sleep
apnea range from annoying to life threatening.
They include depression,
irritability, sexual dysfunction,
learning and memory difficulties,
and falling asleep while at work, on
the phone, or driving. It has been
estimated that up to 50 percent of
sleep apnea patients have high blood
pressure. Although it is not known
with certainty if there is a cause and
effect relationship, it appears that
sleep apnea contributes to high
blood pressure. Risk for heart attack
and stroke may also increase in those
with sleep apnea. In addition, sleep
apnea is sometimes implicated in
sudden infant death syndrome.
WHEN SHOULD SLEEP APNEA
BE SUSPECTED?
For many sleep apnea patients, their
spouses are the first ones to suspect
that something is wrong, usually
from their heavy snoring and apparent struggle to breathe. Coworkers
or friends of the sleep apnea victim
may notice that the individual falls
asleep during the day at inappropriate
times (such as while driving a
working, or talking). The patient
often does not know he or she has
problem and may not believe it when
told. It is important that the person
see a doctor for evaluation of the
sleep problem.
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HOW IS SLEEP APNEA
DIAGNOSED?
In addition to the primary care
physician, pulmonologists, neurologists,
or other physicians with specialty
training in sleep disorders may
be involved in making a definitive
diagnosis and initiating treatment.
Diagnosis of sleep apnea is not simple
because there can be many different
reasons for disturbed sleep.
Several tests are available for evaluating
a person for sleep apnea.
Polysomnography is a test that
records a variety of body functions
during sleep, such as the electrical
activity of the brain, eye movement,
muscle activity, heart rate, respiratory
effort, air flow, and blood
oxygen levels. These tests are used
both to diagnose sleep apnea and to
determine its severity.
The Multiple Sleep Latency Test
(MSLT) measures the speed of falling
asleep. In this test, patients are
given several opportunities to fall
asleep during the course of a day
when they would normally be awake.
For each opportunity, time to fall
asleep is measured. People without
sleep problems usually take an average
of 10 to 20 minutes to fall
asleep. Individuals who fall asleep in
less than 5 minutes are likely to require some treatment for sleep disorders.
The MSLT may be useful to
measure the degree of excessive daytime
sleepiness and to rule out other
types of sleep disorders.
Diagnostic tests usually are performed
in a sleep center, but new technology
may allow some sleep studies to be
conducted in the patient’s home.
HOW IS SLEEP APNEA
TREATED?
The specific therapy for sleep apnea is
tailored to the individual patient
based on medical history, physical
examination, and the results of
polysomnography. Medications are
generally not effective in the treatment
of sleep apnea. Oxygen administration
may safely benefit certain
patients but does not eliminate sleep
apnea or prevent daytime sleepiness.
Thus, the role of oxygen in the treatment
of sleep apnea is controversial,
and it is difficult to predict which
patients will respond well. It is important
that the effectiveness of the
selected treatment be verified; this is
usually accomplished by polysomnography.
Behavioral Therapy
Behavioral changes are an important
part of the treatment program, and
in mild cases behavioral therapy may
be all that is needed. The individual
should avoid the use of alcohol,
tobacco, and sleeping pills, which
make the airway more likely to collapse
during sleep and prolong the
apneic periods. Overweight persons
can benefit from losing weight. Even
a 10 percent weight loss can reduce
the number of apneic events for most
patients. In some patients with mild
sleep apnea, breathing pauses occur
only when they sleep on their backs.
In such cases, using pillows and other
devices that help them sleep in a side
position is often helpful.
Physical or Mechanical
Therapy
Nasal continuous positive airway
pressure (CPAP) is the most common
effective treatment for sleep apnea.
In this procedure, the patient wears a
mask over the nose during sleep, and
pressure from an  air blower forces air
through the nasal passages. The air
pressure is adjusted so that it is just enough to prevent the throat from
collapsing during sleep. The pressure
is constant and continuous.
Nasal CPAP prevents airway closure
while in use, but apnea episodes
return when CPAP is stopped or
used improperly.
Variations of the CPAP device
attempt to minimize side effects that
sometimes occur, such as nasal irritation
and drying, facial skin irritation,
abdominal bloating, mask
leaks, sore eyes, and headaches.
Some versions of CPAP vary the
pressure to coincide with the person’s
breathing pattern, and others
start with low pressure, slowly
increasing it to allow the person to
fall asleep before the full prescribed
pressure is applied.
Dental appliances that reposition
the lower jaw and the tongue have
been helpful to some patients with
mild sleep apnea or who snore but
do not have apnea. Possible side
effects include damage to teeth, soft
tissues, and the jaw joint. A dentist
or orthodontist is often the one to fit
the patient with such a device.
Surgery
Some patients with sleep apnea may
need surgery. Although several surgical
procedures are used to increase
the size of the airway, none of them
is completely successful or without
risks. More than one procedure may
need to be tried before the patient
realizes any benefits.
Some of the more common procedures
include removal of adenoids
and tonsils (especially in children),
nasal polyps or other growths, or
other tissue in the airway and correction
of structural deformities.
Younger patients seem to benefit
from these surgical procedures more
than older patients. Uvulopalatopharyngoplasty (UPPP) is
a procedure used to remove excess tissue
at the back of the throat (tonsils,
uvula, and part of the soft palate).
The success of this technique may
range from 30 to 50 percent. The
long-term side effects and benefits are
not known, and it is difficult to predict
which patients will do well with this
procedure.
Laser-assisted uvulopalatoplasty
(LAUP) is done to eliminate snoring
but has not been shown to be effective
in treating sleep apnea.
This procedure
involves using a laser device to
eliminate tissue in the back of the
throat. Like UPPP, LAUP may
decrease or eliminate snoring but not
sleep apnea itself. Elimination of snoring,
the primary symptom of sleep
apnea, without influencing the condition
may carry the risk of delaying the
diagnosis and possible treatment of
sleep apnea in patients who elect
LAUP. To identify possible underlying
sleep apnea, sleep studies are usually
required before LAUP is performed.
Tracheostomy is used in persons with
severe, life-threatening sleep apnea. In
this procedure, a small hole is made in
the windpipe and a tube is inserted
into the opening. This tube stays
closed during waking hours, and the
person breathes and speaks normally.
It is opened for sleep so that air flows
directly into the lungs, bypassing any
upper airway obstruction. Although
this procedure is highly effective, it is
an extreme measure that is poorly tolerated
by patients and rarely used.
Other procedures. Patients in whom
sleep apnea is due to deformities of the
lower jaw may benefit from surgical
reconstruction. Finally, surgical procedures
to treat obesity are sometimes
recommended for sleep apnea patients
who are morbidly obese.
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U.S. DEPARTMENT OF HEALTH
AND HUMAN SERVICES
Public Health Service -
National Institutes of Health
National Heart, Lung, and
Blood Institute
NIH Publication No. 95-3798,
September 1995
FOR MORE
INFORMATION
Information about sleep
disorders research can be
obtained from the NCSDR.
In addition, the NHLBI
Information Center can
provide you with sleep
education materials as well
as other publications relating
to heart, lung, and
blood diseases.
National Center on Sleep -
Disorders Research
Two Rockledge Centre,
Suite 7024
6701 Rockledge Drive
MSC 7920
Bethesda, MD 20892-7920
(301) 435-0199
FAX: (301) 480-3451
NHLBI Information Center
P.O. Box 30105
Bethesda, MD 20824-0105
(301) 251-1222
FAX: (301) 251-1223
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10 Tips for Family Caregivers.
1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
2. Watch out for signs of depression, and don’t delay in getting professional help when you need it.
3. When people offer to help, accept the offer and suggest specific things that they can do.
4. Educate yourself about your loved one’s condition and how to communicate effectively with doctors.
5. There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.
6.Trust your instincts. Most of the time they’ll lead you in the right direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Seek support from other caregivers. There is great strength in knowing you are not alone.
10. Stand up for your rights as a caregiver and a citizen.
Tips for Family Caregivers from Doctors
- Write questions down so you won’t forget them
- Be clear about what you want to say to the doctor. Try not to ramble.
- If you have lots of things to talk about, make a consultation appointment, so the doctor can allow enough time to meet with you in an unhurried way.
- Educate yourself about your loved one’s disease or disability. With all the information on the Internet it is easier than ever before.
- Learn the routine at your doctor’s office and/or the hospital so you can make the system work for you, not against you.
- Recognize that not all questions have answers—especially those beginning with “why.”
- Separate your anger and sense of impotence about not being able to help your loved one as much as you would like from your feeling about the doctor. Remember, you are both on the same side.
- Appreciate what the doctor is doing to help and say thank you from time to time.
Care Management Techniques You Can Use
Did you ever wish you could just pick up the phone and call someone who would take stock of your situation, help you access the right services, counsel you and your family to help resolve some of your differences, then monitor your progress with an eye toward channeling your energy and abilities as effectively as possible? If your answer is “yes,” you’re not alone. Having the help of a care coordinator (often called a care manager) could make all of our lives easier and less lonesome, and help us be more capable family caregivers. While most of us may not have access to a care coordinator, we can all learn how to think and act like one, thereby reaping numerous benefits for our loved ones and ourselves.
What Is Care Coordination?
Although every case is different, the care coordination approach usually involves:
- Gathering information from healthcare providers;
- An assessment of your care recipient and the home environment;
- Research into available public and/or private services and resources to meet your loved one’s needs; and
- Ongoing communication between all parties to keep information up-to-date and services appropriate and effective.
Unfortunately, an assessment of your abilities and needs is not necessarily a standard part of the process, but it should be. A complete view of the situation cannot be gained without one. An objective analysis of your health, emotional state, other commitments, etc., are key elements in determining how much you can and cannot do yourself, and what type of outside support is needed to ensure your loved one’s health and safety.
Become Your Own Care Coordinator
By learning and applying at least some of the care coordination techniques and ideas that follow, you’ll be in a much better position to develop an organized course of action that will, hopefully, make you feel more confident and in control — a goal well worth working toward.
Educate yourself on the nature of the disease or disability with which you’re dealing. Reliable information is available from the health agency that deals with your loved one’s condition and the National Institutes of Health. When using the Internet, stick with well-known medical sites. Understanding what is happening to your care recipient will provide you with the core knowledge you need to go forward. It will also make you a better advocate when talking with healthcare professionals.
Write down your observations of the present situation including:
- Your loved one’s ability to function independently, both physically and mentally.
- The availability of family and/or friends to form a support network to share the care.
- The physical environment: Is it accessible or can it be adapted at reasonable cost?
- Your other responsibilities — at work, at home, and in the community.
- Your own health and physical abilities.
- Your financial resources, available insurance, and existence of healthcare or end-of-life documents.
This assessment will help you come to a realistic view of the situation. It will let you know the questions to which you need answers. It can be a handy baseline for charting your caregiving journey and reminding you just how much you’ve learned along the way.
Hold a family conference. At least everyone in the immediate family should be told what’s going on. A meeting can set the stage for divvying up responsibilities so that there are fewer misunderstandings down the road when lots of help may be needed. A member of the clergy, a professional care coordinator, or even a trusted friend can serve as an impartial moderator. A family meeting is a good way to let everyone know they can play a role, even if they are a thousand miles away. It can help you, the primary family caregiver, from bearing the brunt of all the work all of the time.
Keep good records of emergency numbers, doctors, daily medications, special diets, back-up people, and other pertinent information relating to your loved one’s care. Update as necessary. This record will be invaluable if something happens to you, or if you need to make a trip to the ER. If you can maintain a computer-based record, that will make updating all that much easier and it might even allow you to provide the medical team with direct access to the information.
Join a support group, or find another caregiver with whom to converse. In addition to emotional support, you’ll likely pick up practical tips as well. Professionals network with each other all the time to get emotional support and find answers to problems or situations they face. Why shouldn’t family caregivers?
Start advance planning for difficult decisions that may lie ahead. It’s never too early to discuss wills, advance directives, and powers of attorney, but there comes a time when it is too late. It is also vital that you and your loved one think through what to do if you should be incapacitated, or, worse, die first. It can happen.
Develop a care team to help out during emergencies, or over time if your situation is very difficult. In an ideal world there will be lots of people who want to help. More likely you’ll be able to find one or two people to call on in an emergency or to help with small chores. The critical thing is to be willing to tell others what you need and to accept their help.
Establish a family regimen. When things are difficult to begin with, keeping a straightforward daily routine can be a stabilizer, especially for people who find change upsetting and confusing.
Approach some of your hardest caregiving duties like a professional. It’s extraordinarily difficult to separate your family role from your caregiving role, to lock your emotions up in a box while you focus on practical chores and decisions. But it is not impossible to gain some distance some of the time. It requires an almost single-minded approach to getting the job at hand done as efficiently and effectively as possible. It takes practice, but is definitely worth the effort.
©National Family Caregivers Association | www.nfcacares.org | Phone: 800/896-3650
Seating & Mobility - As a caregiver, you need to be very understanding to the individual's needs. This is a very hard time as they are being told they need to start living their life in a different manor than they had done so previously. It will be most beneficial to educate them, either with a professional, or through a support group. By becoming involved in different activities with others in the same condition, the individual will be able to make the transition much easier. As far as the actual device, you will want to make sure that the individual is fully capable of performing all the operations of the mobility device and can do so in a comfortable manner. Areas to pay close attention to include an adjustable backrest, a suspension system, a fore-and-aft track adjustment, an up-and-down seat adjustment, an armrest and/or footrest, and lumbar region support.
How do you care for your mobility device?
The most important areas that you need to pay attention to are referred to as the 3 B’s…Bad batteries, bent wheel rims and failed bearings. If you notice something that doesn’t seem right, but it isn’t all too annoying, you should still get it looked at right away. This could prevent a more severe accident from happening. So as the saying goes “it’s better to be safe than sorry”.
When a wheelchair is purchased, you will want to make sure that all the correct adjustments and modifications are made. This needs to be done by a professional and should take up to a couple of hours if done correctly. As long as the proper measures are taken initially, the work of maintaining the device will be substantially easier.
Additional Resources
It's always wise to find out what your county and state have to offer in the way of services, even if you think you won't qualify for them. Check the blue pages of your phone book for the numbers, or go on line. Counties and states all have web sites. Type the name of your state or county and state into any major search engine i.e. Iowa, or Montgomery County, PA. Navigate from there to locate the Department of Health and Human Services and the specific office most relevant to your needs, such as office on disabilities, elder affairs, or maternal and child health.
Other good sources of information include your local hospital or clinic (social work department), area adult day centers, social service and faith-based agencies, and/or the local chapter of the health agency that focuses on your loved one's condition. It is by no means certain that any of these will offer caregiver support services, but they are good places to check, and they are good sources for information about services to directly support your loved one.
National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
800-896-3650
Web site: http://www.thefamilycaregiver.org
e-mail: info@thefamilycaregiver.org
The National Family Caregivers Association (NFCA) is a grassroots organization created to educate, support, empower, and advocate for the millions of Americans who care for chronically ill, aged, or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships, and different life stages to address the common needs and concerns of all family caregivers. NFCA serves as a public voice for family caregivers to the press, to Congress and the general public. NFCA offers publications, information, referral services, caregiver support, and advocacy.
Caregiver-Specific Web Sites
There are a variety of Web sites that offer information and support for family caregivers, in addition to those from specific organizations.
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