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A CAREGIVER’S GUIDE TO
Arthritis
You have learned recently that a family member has arthritis and may need
your care in the months and years ahead. Or perhaps your parent, spouse
or relative or friend has had arthritis for years but now needs more help.
In either case, the more you know about the condition, how it’s managed
and the needs that may arise from it, the better able you will be to offer
understanding care.
The goal of this guide is to help you learn how arthritis may affect your family
member and how you can best provide care and assistance without losing
sight of what you need as well.
Please note that the content, suggestions and tips included in this guide are
provided for informational purposes only. They are not intended to be and
should not be construed as being medical advice or a substitute for receiving
professional medical advice, diagnosis or treatment. Always seek the advice
of a physician or other qualified medical provider for any questions you or a
loved one may have regarding a medical condition.
Home Instead, Inc. and the Home Instead Senior Care franchise and master
franchise network do not warrant or guarantee that following any of the
suggestions or tips included in this guide will help to prevent, eliminate or
alleviate any of the conditions or symptoms associated with persons who
suffer from arthritis, and expressly disclaim any liability with respect to the
content, suggestions and tips included in this guide.
Each Home Instead Senior Care franchise office is independently owned and operated.
Compliance with federal, state/provincial and local law is each franchise owner’s responsibility.
Home Instead, Inc. acknowledges with appreciation the
content provided by The Arthritis Foundation, Inc. which
has been incorporated into this training.
Table of Contents
What You Need to Know About Arthritis...................... 3
Facts About Osteoarthritis.............................................. 4
Facts About Rheumatoid Arthritis................................... 5
Common Arthritis-Related Diseases............................... 5
Your Loved One’s Medical Care..................................... 6
Understanding Your Loved One’s Needs.......................... 8
Avoiding Caregiver Burnout......................................... 11
Resources..................................................................... 13
Notes........................................................................... 14
What You Need to Know about Arthritis
Arthritis is an umbrella term for conditions that affect the joints, the place
where two or more bones meet to allow movement. In some types of
arthritis, other parts of the body like organs, eyes and skin may also be
affected. There are nearly 100 different types of arthritis affecting some 50
million people in the United States.
These conditions commonly impact one’s mobility, the ability to move freely
without pain. They also can limit a person’s ability to do everyday tasks, such
as brushing hair, buttoning a coat, walking to the mailbox or opening the
refrigerator door.
It is important that you know the type of arthritis your family member has
so that you can understand how you can best provide support. Two of the
most common forms are osteoarthritis and rheumatoid arthritis.
There are nearly
100 different types
of arthritis affecting some
50 million people
in the United States.
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FACTS ABOUT OSTEOARTHRITIS (“OA”)
WHAT IT IS
Osteoarthritis is the most common form of arthritis and affects about 27
million Americans. Osteoarthritis has long been thought of as an inevitable
part of the aging process, a disease of wear and tear in the joints. However,
researchers now know that the disease involves the entire joint—the
cartilage, joint lining, ligaments, and bone—and that factors beyond wear
and tear are involved, such as chemical changes that result in deterioration
of bone and cartilage and inflammation in the joint lining. Osteoarthritis
most commonly affects the joints we use most: hands, spine, hips and knees.
In osteoarthritis, the cartilage that covers the ends of bones and provides
cushioning begins to break down. This leads to pain, swelling and difficulty
moving the joint.
WHAT IT FEELS LIKE
Some people can have x-rays riddled with osteoarthritis but have few
symptoms. Others can have pain and stiffness in the affected joints,
particularly on waking, after exercise, or when weight or pressure is
put on the joints. Morning stiffness can ease, usually within a half hour,
with gentle movement. But over time, the pain and stiffness may grow,
even interfering with sleep. The joints may seem to rub together and
even make a crackling sound.
4
FACTS ABOUT RHEUMATOID ARTHRITIS “RA”
WHAT IT IS
Rheumatoid arthritis is a chronic inflammatory disease that affects at least
1.5 million American adults, about three-fourths of whom are women. It is
thought to be triggered by a faulty immune system.
WHAT IT FEELS LIKE
RA can come with fatigue, a low fever, little appetite, pain, limited movement
and stiffness that can last for hours, especially in the morning. People with
severe RA can also develop lumps called rheumatoid nodules under the skin
near affected joints, which can be painful.
COMMON ARTHRITIS-RELATED DISEASES
While OA and RA may be the most commonly recognized types of arthritis,
there are other related conditions that are often found in older adults. They
include:
Fibromyalgia
A condition that causes pain in the muscles and soft tissues and is
often accompanied by fatigue, poor sleep and sensitivity to touch,
especially in certain tender points on the body.
Gout
A condition that occurs when the body produces too much of a
substance called uric acid, which can lead to the development of
uric acid crystals in the joint (typically the big toe) and causes severe
pain and swelling.
Osteoporosis
One of the most common arthritis-related diseases, this condition
causes bone to lose mass and become thin and brittle, which can
lead to painful fractures, rounded shoulders and loss of height.
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YOUR LOVED ONE’S MEDICAL CARE
If your loved one is in pain, it may be hard for them to juggle the details
of medical care alone. He or she may need help getting to doctor’s
appointments, remembering details of appointments, taking medications and
making sure prescriptions are refilled. You can be an extra set of eyes and
ears for your family member, and an aid in navigating the best health care
plan for him or her.
YOUR RELATIONSHIP WITH THE DOCTOR/STAFF
Being able to communicate concerns you have about your spouse or parent
to the doctor and staff members is essential. But you also need to make sure
that your participation does not erode your family member’s own relationship
with the physician, instead supporting and augmenting it, a sometimes delicate
balance. Here are ways you can develop a positive relationship with the
physician and support your loved one’s relationship as well.
WHAT YOU CAN DO TO HELP
Educate yourself. Learn all you can about the different types
arthritis, its complications and the side effects of arthritis drugs (if any).
Websites with excellent information include the Arthritis Foundation,
www.arthritis.org; the National Institute of Arthritis and Musculoskeletal
and Skin Diseases, www.niams.nih.gov; and the American College of
Rheumatology, www.rheumatology.org.
Attend doctor’s visits. The doctor may offer a lot of information
at once and sometimes in language that can be tough to understand.
By being at each visit, you can take notes and also ask the doctor
to explain technical terms you and your family member may not
understand.
Prepare ahead. Ask your spouse or parent what they want to talk
to the doctor about and write those concerns and questions down
before the doctor’s visit. Add your own observations about any
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medical changes you’ve noticed, like increased pain, lack of appetite,
and sleeplessness.
Acknowledge disagreements. Let the doctor know if there are
areas of care that you and your family member don’t agree on. Discuss
those concerns in private with the doctor.
If you’re an adult child caring for a parent, the most important
thing is for you to know what your parent is feeling and what
she needs from you. Ask about her worries and concerns about
her future, about her arthritis, about her medical care, and about your
involvement. Try to find out what her preferences are about where
she wants to live and what kind of care she wants and needs. Try to
remember that your parent probably values independence as much
as you do.
QUESTIONS TO ASK
• Ask how you can be helpful. Ask the doctor how you can be an ally in
guiding your family member’s care. His first obligation is to his patient, and
he may ask for your help in watching for certain changes and symptoms,
for instance, or in ensuring that the person takes their medications.
• Ask for explanations. Ask the doctor to explain what any new tests
or prescriptions are for, what the alternatives are, what any side effects
might be, and, in the case of medication, ask if there are dangers of
adverse interactions with medications your loved one is currently taking.
Have a list of those medications with you at every appointment.
• Ask about emergency procedures. Ask the doctor what you should
do in case of an emergency and also what hospital he uses. Ask also
about whom to call if you have a medical concern after office hours.
• Ask the doctor about other resources. Find out if there are other
healthcare services like physical therapy, occupational therapy and mental
health services. And ask about help for yourself as well: What assistance
is available to caregivers? Are there caregiving support groups that your
doctor can refer you to.
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UNDERSTANDING
YOUR LOVED ONE’S NEEDS
People handle pain and discomfort in all sorts of ways. Some people keep
a stiff upper lip, feeling embarrassed or uncomfortable with complaints.
Others may complain indirectly by acting out of sorts or grouchy. Others
may get down in the dumps. Below is a roadmap to some of the challenges.
EMOTIONAL CHALLENGES: HOW YOU CAN HELP
People with arthritis may also experience depression, anxiety and/or a
feeling of helplessness because they are no longer able to do things they
used to do. They can also feel isolated, like no one quite understands what
they are going through. And stress from chronic pain can stalk them as well.
You can help by doing the following:
Listen and empathize.
You may feel like you need to solve
everything when in fact what your loved one may want most is to
express their emotions of sadness and loss. Encourage them to talk
about how they are feeling, and any concerns or fears.
Make a date. Plan some outings like lunch out, or a short shopping
trip, or just a time to read together. That can help your loved one feel
less isolated and alone.
Practice relaxation together. Chances are you could both use
some R&R. Practice deep breathing together. Or run your family
member a warm bubble bath where he can listen to music and relax.
Encourage some movement. If your spouse or parent is able, ask him
or her to go for a short walk with you outside. Exercise can lift spirits and
lessen pain. Ask the doctor what kind of exercise would be helpful.
Ask for help. Tell the doctor that your family member seems depressed
and anxious. The doctor may be able to prescribe an antidepressant or
anti-anxiety medication that can help. Some antidepressants also help
with pain.
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PHYSICAL CHALLENGES: HOW YOU CAN HELP
The range of physical challenges from arthritis can be extensive: The person
may have difficulty walking, trouble with household tasks like opening jars
and turning doorknobs, or even problems with dressing and combing his or
her hair. And pain may make sleep hard to come by. But there are ways
you can help ease physical restraints and discomforts.
Arrange for physical and occupational therapy.
A physical
therapist can develop an exercise routine for your family member that
will likely include range-of-motion exercises that will make it easier for
him to do things like comb his or her hair, or stand up or sit down;
strength training that will strengthen the muscles that support the
joints; and some cardiovascular exercise like walking or swimming that
will help him maintain overall fitness.
An occupational therapist will assess what your family member can
and can’t do, and address ways to help make difficult tasks easier. For
instance, she may suggest small household changes like door latches
instead of twist knobs that won’t stress the joints.
Employ heat and cold. Heat works by stimulating blood circulation,
which can reduce muscle spasms and relieve pain. Encourage your
family member to take a warm shower each morning to relieve
morning stiffness. Applying heating pads or patches to painful areas
for 15 minutes at a time can help as well.
Try massage. Research shows that regular massage can reduce
pain and stiffness and improve range of motion and joint function.
An added bonus is that massage also reduces anxiety, a common
accompaniment to chronic pain. Researchers have found that massage
lowers stress hormones and increases feel-good neurotransmitters
like serotonin. Make sure the doctor thinks it’s a good idea and get a
referral to a massage therapist familiar with arthritis.
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Address sleep difficulties. Pain robs sleep. And fatigue increases
pain. Talk with the doctor about ways that your spouse or parent can
sleep more soundly. Try to persuade your family member to avoid
caffeine and alcohol, which disturb sleep. And share some minutes of
soft music, deep breathing, and warm milk before going to sleep in a
cool, dark room.
Prepare nutritious meals. Some foods can help fight inflammation,
while others may trigger arthritic flares (increase in symptoms). And
maintaining a healthy weight can also help manage joint pain. Fruits
and vegetables, fish, fiber and whole grains can help fight inflammation.
High fat foods may trigger arthritic flares.
Evaluate housing. If you are caring for a parent, you may want your
parent to live with you. Evaluate all the options with your parent
first. Your parent may want to stay where she is, move to a nearby
apartment or a skilled facility with assisted living.
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Avoiding Caregiver Burnout
A danger of caregiving, whether you are a spouse or grown child
caring for a parent, is offering care at your own physical and emotional
expense. You are no help to your family member if you are burned
out. Below are tips for managing caregiver stress and fatigue.
Take time to exercise. Exercise is not only essential to
maintain the physical stamina you need to care for your
spouse or family member, but also provides a break in
your day. And the endorphins-feel-good hormones-that
exercise induces will also help boost spirits that can get a
beating as a caregiver.
Ask for help. Don’t hesitate to ask other family and friends
to share your caretaking duties. Disperse tasks like driving
to doctors’ appointments or picking up prescriptions. You
don’t have to do everything. If no one is available, consider
hiring regular help that can offer you a chance for a respite.
Talk to other friends and acquaintances who have also been
caregivers, or join a caregiver’s support group where you
can get empathy and information.
Check employer benefits. Your employer may offer a plan
that helps families who are caring for loved ones.
Monitor your own spirits. It’s not unusual for caregivers to
become depressed from stress, exhaustion, and from seeing
someone they love in pain. If you feel blue for two weeks or
longer, ask your doctor if you could be depressed and what
remedies such as antidepressants he might suggest.
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Stay social. Isolation is a difficulty for caregivers. Schedule
regular outings with friends, even if they are brief.
Get a handle on finances. Money may be an issue. Talk about
who will be responsible for what costs with your parent and
siblings.
Enlist other family. Talk to other family members about how
they would like to help. Try to be realistic about what you can
manage and what others need to help you with.
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Resources
Arthritis Foundation Programs
for Better Living
for more information contact
the Arthritis Foundation at
1.800.283.7800 or www.arthritis.org
WEBSITES:
The Home Instead Senior Care
Network
HomeInstead.com
CaregiverStress.com®
CaregiverStress.com
The National Institute of Arthritis
and Musculoskeletal and Skin
Diseases
niams.nih.gov
The American College of
Rheumatology
rheumatology.org.
American Academy of
Orthopaedic Surgeons (AAOS)
aaos.org.
Today’s Caregiver
Caregiver.com
Family Caregiver Alliance
Caregiver.org
Share The Care
Sharethecare.org
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BOOKS:
A Bittersweet Season: Caring for
Our Aging Parents-and Ourselves
by Jane Gross (Vintage, 2012)
Good Living with Rheumatoid
Arthritis
(Arthritis Foundation, 2006)
Good Living with Osteoarthritis
(Arthritis Foundation, 2006)
The Caregiver’s Survival Handbook
by Alexis Abramson, Ph.D. with
Mary Anne Dunkin (Perigree,
2011)
The Emotional Survival Guide for
Caregivers
by Barry J. Jacobs, Psy.D. (Guildford
Press, 2006)
ASSISTIVE DEVICES
Arthritis Foundation Ease of Use
page
arthritis.org/resources/ease-of-usenew/
ArthritisSupplies.com
arthritissupplies.com
Living Better with Arthritis
aidsforarthritis.com/catalog/
index.html
Notes
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