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.

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

Table of Contents

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 ISOsteoarthritis 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 LIKESome 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.

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FACTS ABOUT RHEUMATOID ARTHRITIS “RA”

WHAT IT ISRheumatoid 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 LIKERA 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 DISEASESWhile 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:

FibromyalgiaA 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.

GoutA 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.

OsteoporosisOne 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.

• 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.

QUESTIONS TO ASK

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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 HELPPeople 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 HELPThe 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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Addresssleepdifficulties. 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 BurnoutA 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.

Checkemployerbenefits. 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.

Getahandleonfinances. 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

WEBSITES:

The Home Instead Senior Care NetworkHomeInstead.com

CaregiverStress.com® CaregiverStress.com

The National Institute of Arthritis and Musculoskeletal and Skin Diseasesniams.nih.gov

The American College of Rheumatologyrheumatology.org.

American Academy of Orthopaedic Surgeons (AAOS)aaos.org.

Today’s CaregiverCaregiver.com

Family Caregiver AllianceCaregiver.org

Share The Care Sharethecare.org

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 pagearthritis.org/resources/ease-of-use-new/

ArthritisSupplies.com arthritissupplies.com

Living Better with Arthritis

aidsforarthritis.com/catalog/index.html

Arthritis Foundation Programs for Better Livingfor more information contact the Arthritis Foundation at 1.800.283.7800 or www.arthritis.org

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Notes

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