Caring and Arthritis Practical advice for carers and people living with arthritis
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Caring and
Arthritis
Practical advice
for carers and
people living
with arthritis
Caring for someone with arthritis can How can a carer help someone with arthritis?
be a challenge.
Most people with arthritis wish to remain as independent as possible,
This booklet has been developed by Arthritis Queensland so finding the right balance between providing support without being
overprotective can be a challenge. Knowing when to offer help or when to
to help people caring for an adult with arthritis.
stand back can be difficult but will be one of the most important things you
can learn.
This booklet:
“Listening
• Explains what arthritis is and how it
affects people
• Suggests ways a carer can provide
practical support
• Provides tips on improving
communication between the carer and the
person being cared for
as well as
• Outlines additional sources of support for talking is
people with arthritis
• Includes information about where carers essential.
”
can obtain further advice and support.
Acknowledgements
The Arthritis Foundation of Queensland would like to formally acknowledge contributions by: There are three main ways in which you can help:
Author: Tanya deKroo
Design: Page Creations 1. Understand what arthritis means. In the same way that
Arthritis Queensland acknowledges Arthritis Ireland’s generous sharing of the intellectual property from their booklet understanding their condition helps people with arthritis to cope,
titled “Caring for a Person with Arthritis.” the more you understand about arthritis the more you will be able to
Arthritis Queensland would also like to thank all of the individuals who assisted during the consultation phase provide supportive care and assistance.
for development of this booklet, including Lyn and John Hicks, staff of Carers Queensland and Home Instead
Senior Care.
2. Support arthritis management. This could range from providing
Home Instead Senior Care has generously funded the development, design, and printing of this booklet.
reminders about taking medications, to assisting with recommended
© Arthritis Foundation of Queensland 2012.
exercises, activities or therapies that have been helpful in reducing the
All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, transmitted in any
form or by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of
symptoms of arthritis.
the publisher. Printed in Australia.
3. Communicate effectively. Good communication - listening as well
Arthritis Queensland (inc. Osteoporosis Queensland)
PO Box 2121 as talking - is essential. It’s important that you and the person with
WINDSOR QLD 4030 arthritis discuss how you’re both feeling and agree on how you can
P: 07 3857 4200
F: 07 3857 4099 work together.
1
Understanding arthritis
What is arthritis?
Arthritis is a name for the group of conditions
affecting the joints. There are over 100 forms
of arthritis, affecting many different parts of
the joint and nearly every joint in the body.
Some forms of arthritis can also involve other
parts of the body, such as the eyes and skin.
In Australia nearly one in five people has
arthritis. Many people think arthritis is a
normal part of growing older. This is not
true. In fact two out of every three people
with arthritis are between 15 and 60 years
old. Arthritis can affect people from all
backgrounds, ages and lifestyles.
The most common forms of arthritis are:
• Osteoarthritis
• Rheumatoid arthritis
• Gout
• Ankylosing spondylitis.
Follow this symbol for suggestions about
additional booklets and information
“Arthritis can
sheets that can be downloaded from
www.arthritis.org.au or call 1800 011 041 for
printed copies. What is the outlook?
Most forms of arthritis run a very uneven course, with variation from
How is arthritis diagnosed? affect people day-to-day and from one person to another. The long-term outlook is
It is important arthritis is diagnosed by also variable and difficult to predict. Although some forms of arthritis will
a doctor (GP or rheumatologist). This is from all get better by themselves, the majority of types are long-term (chronic)
because there are many different types of disorders where the disease can’t be cured. There may be times when
arthritis, and treatments differ according to backgrounds, symptoms ease but then there will be periods when the symptoms ‘flare
”
the type of arthritis diagnosed. Doctors will
use a variety of tests, including physical ages and up’ again, often for no clear reason. With the right treatment and support,
most people with arthritis can learn to cope with their symptoms and lead
examination, blood tests and x-rays, to
diagnose arthritis.
lifestyles. a full, rewarding life.
2 3
How does it feel to have arthritis? Fatigue – Many people with arthritis experience fatigue, no matter
what they have been doing or how much sleep they have had. For some
people the tiredness, (in some cases, even exhaustion) is more difficult
Arthritis affects different people in different ways, and there are no right or
to cope with than the pain. There are many possible causes of fatigue,
wrong ways to feel. A person may be impacted in the following ways:
including the disease process itself, pain (which can also affect sleep),
certain medicines, muscle weakness and wasting, or depression.
Pain – A person with arthritis may experience pain with certain movements
or tasks, or pain may be constant. It may be worse in the mornings or might
Emotional impact – Up to two thirds of people with arthritis say their
build throughout the day. They may feel pain in a single joint, several joints,
condition has affected them emotionally:
muscles, tendons or other soft tissues.
• Many people with arthritis are frightened by the impact arthritis
The problem with the pain of arthritis is that it is ongoing. Living with pain
might have on their life
can make people irritable, angry and at times depressed.
• People living with persistent pain are four times more likely to
Arthritis pain is generally caused by: experience depression or anxiety
• Inflammation
• Having arthritis can result in a loss of independence, self esteem,
• Damage to the joints the ability to work and take part in social or recreational activities.
• Muscle tension. This can lead to feelings of frustration, resentment and isolation
Additionally, pain can be affected by external factors such as stress, • Living with arthritis can place stress on relationships. It can be
fatigue (tiredness) and depression. People who feel depressed or anxious very difficult for a person with arthritis to watch someone doing
can be more sensitive to pain. They may feel less like doing their usual something that they saw as their job or having to be helped with
activities or exercises, leading to further muscle weakness and wasting. tasks that are usually private, e.g. toileting and personal hygiene.
This can worsen pain and lead to a continued cycle of fatigue and Pain and tiredness may also make connecting with family
depression. members and friends difficult. Intimate relationships can also
be affected.
How can a carer help?
Look for signs of pain such as:
“
• Frowning, grimacing or wincing
• Guarding, rubbing or holding body part
• Difficulty moving or walking differently My arthritis makes it difficult for me
• Irritability, anger, aggressiveness to cook. It might take me all day to
• Becoming withdrawn prepare a meal for our whole family
• Sleep disturbances, feeling fatigued
on a Sunday, as I need lots of rest
• Poor appetite
breaks. My husband knows it’s really
Stiffness – Stiff joints and muscles can be painful important to me to still be able to
and make it difficult for a person to perform their
usual activities. do that for my family.
4 5
Arthritis can make it Managing arthritis
difficult to carry out normal
everyday activities, Many of the symptoms of arthritis can be managed through the right
for example: combination of exercise, medications, lifestyle changes and learning to
• Hands: gripping and cope. As a carer, you have an important part to play.
holding objects, turning
taps and keys, dressing Medicines
• Knees and hips: getting Medicines are one of the main treatments for arthritis, aiming to:
out of a chair, walking • Relieve pain
up/down stairs or hills, • Reduce inflammation
kneeling or squatting,
• Suppress the immune system
standing or walking for
prolonged periods • Reduce joint damage.
• Back: getting out of
bed, sitting for prolonged
How can a carer help?
periods such as driving, Encourage the person with arthritis to:
bending down to put on • Understand why the medicine is being taken and what
shoes or socks. is a reasonable expectation of how effective it will be
These symptoms may • Find out what the possible side effects are
also make hobbies and • Read all medicine labels and take medicines as directed
leisure activities, such as • Keep a personal record of all medications being taken
gardening, golf or travelling, • Talk to a doctor or pharmacist before taking any over-the-counter
more difficult. medicines (including complementary or ‘natural’ medicines)
Arthritis symptoms can • Avoid sharing medicines
“
also vary from day to day, • Talk to a doctor or pharmacist to answer any questions.
making tasks that appear
easy on some days almost ‘Medicines and Arthritis’ information sheet
impossible on others. This Sometimes the best
can make it difficult to thing my husband can Diet
predict how much help will
be needed. Sometimes you
do for me is to allow No diet or supplement has been proven by research to alleviate or
me to just complete the worsen arthritis. The best diet for any type of arthritis is a balanced one
may have to stand back
to maintain general health and a healthy weight– being overweight will
and watch your partner, task, no matter how long increase the stress on the joints.
child, friend or colleague
struggle to achieve a goal it takes. He knows to
that is important to them. ‘respect the struggle’ ‘Healthy Eating and Arthritis’ information sheet
6 7
Exercise Fighting fatigue and taking care of the joints
Exercise is one of the most important treatments for Looking after sore joints during daily activities can help reduce pain, stress
arthritis and can: and tiredness. It involves:
• Reduce pain • Spreading activities throughout the day
• Maintain mobility of joints • Avoiding activities that cause pain or finding a different way
• Strengthen muscles of doing them
• Improve posture, balance and overall health. • Learning about equipment that can make daily tasks easier
How can a carer help? • Seeing an occupational therapist for advice
Encourage the person with arthritis to: • Learning ways to get a good night’s sleep.
• Move regularly
• Talk to their doctor, physiotherapist or exercise How can a carer help?
physiologist before starting an exercise program Contact an occupational therapist or the Independent Living Centre in your
• Exercise when they have less pain and stiffness state for information about aids and adaptations.
and when medicines are having the most effect
• Make exercise a daily habit. ‘Saving Energy’ information sheet and ‘At Home with Arthritis’ booklet
Try not to be over protective. Allow the person with
“
arthritis to do as much as they can.
Complementary therapies
‘Physical Activity’ information sheet There are many non-medical treatments Learn about
available, such as vitamin and mineral
Dealing with pain supplements and herbal medicines. Some of the safe use of
complementary
”
There are many different ways to manage pain, so it is worthwhile trying a these may work but many have not been proven
range of techniques, including: to be useful or safe.
therapies.
• Heat or cold e.g. warm bath, cold packs
• Massage How can a carer help?
• Acupuncture • Do not pressure the person with arthritis
• Relaxation techniques to try treatments that have not been
• Focusing attention on something other than the pain (distraction well proven
techniques).
• If the person with arthritis is interested in
How can a carer help? using complementary therapies, encourage
Learn to recognise the signs of pain. If the person is having a ‘bad day’, be them to discuss them with their GP or
patient, provide extra support and help them to use one of their preferred rheumatologist.
pain management techniques.
‘Complementary Therapies’
‘Dealing with Pain’ information sheet information sheet
8 9
Coping with emotions Communicate effectively
It is normal for people with arthritis to experience a wide range of feelings Good communication is essential. It is important that you and the person
and emotions. Learning to manage negative emotions involves: with arthritis are able to discuss how you are both feeling. You need to
• Being aware of, and able to recognise, the signs of stress, agree how to work together so the person will feel able to ask for extra
depression or other emotions help when needed, and to turn it down when not. Communication is also
necessary so you can judge how they are feeling and respond sensitively.
• Finding someone to talk to – it could be family, friends, children, a
support group or online forums
“
• Seeking help from health professionals
if negative emotions are interfering with
everyday life
• Learning and practicing relaxation
techniques, such as meditation, deep
breathing, yoga and tai chi Despite my wife’s
• Staying involved in social activities. condition and
difficulties, her
How can a carer help?
positive attitude
• Start the conversation. It can be difficult
to know how to help someone who has been the most
appears to be in need. Choose the important thing
right time, indicate that you’ve noticed
a change in their behaviour. Let them that has helped
know you’re there to listen without being
me as her carer.
judgemental
• Encourage them to focus on positive
It has helped her
experiences and think about what they stay healthy and
can do rather than things they have
difficulty with
to live as full a life
• Support them to see a health as she can. It has
professional if their emotions are too helped me cope
overwhelming to work
through alone with all the changes
• Try to keep planning social activities and her arthritis has
other events that the brought to our lives.
person enjoys.
‘Arthritis and Emotions’ information sheet
10 11
Here are some tips to help you communicate effectively: Services and support
• Respect what the person is saying by taking the time to listen and Support the person with arthritis in applying for any benefits and
give them your full attention. To confirm you have understood what entitlements they may be eligible for.
the person has said, you may sometimes paraphrase their words
back to them as a question. Although you may not understand or Income support
agree with them, it is important to recognise and accept that is how • Information about the range of support payments is available from
they feel Centrelink at www.centrelink.gov.au call 13 27 17 or visit your
local Centrelink Customer Service Centre.
• Pay attention to non-verbal cues as well as what the person is
saying. Learn to recognise the signs of a ‘bad day’. Even though the Employment
person may be angry or withdrawn, they may actually need extra • Centrelink can arrange assessments to help people identify the
support at this time impact of their condition on their ability to work
• Consider your own body language. Show you are listening, by • Job Access provides free, confidential advice on disability
employment related matters. Visit www.jobaccess.gov.au or
looking at the person, making eye contact and using engaging body
phone 1800 464 800
language e.g. nodding in agreement
• Commonwealth Rehabilitation Service (CRS) assists people with
• Consider your choice of words. Your words can imply emotions and injuries and disabilities to get and keep jobs.
sentiments that you don’t actually mean e.g. rather than saying ‘Can Visit www.crsaustralia.gov.au.
I make the bed for you’, simply say ‘Let me make the bed today’
Travel
• Be aware of your tone of voice. Speaking in an angry or exasperated
• The Mobility Allowance - contact Centrelink for information
way conveys a far stronger message than the words you’re
actually saying • The Australian Disability Parking Scheme – visit
www.disabilityparking.gov.au for more information
• Stay on topic and avoid bringing other issues into the discussion. • Subsidised travel in taxis – contact your State/Territory
government for more information.
Health
If you can’t seem to • Commonwealth Respite and Carelink Centres provide free and
communicate effectively, confidential information on community aged care, disability and
consider talking with a other support services available locally, interstate or anywhere
relationship counsellor within Australia. Phone 1800 200 422 or visit
http://www9.health.gov.au/ccsd/
or psychologist. They
can help recognise • A Health Care Card entitles people to cheaper medicines and
patterns and potential some other concessions. For more information contact Centrelink
problems in the way • People with chronic illnesses may be eligible for Medicare
rebates for up to five allied health sessions per calendar year. Ask
you and the person your GP for more information
with arthritis are • Under the Chronic Disease Dental Scheme, some people are
communicating and help able to receive dental services under Medicare. Ask your GP for
change those patterns. more information.
12 13
For Carers - looking after yourself Planning for the future
There may be some long term plans to consider:
Caring can be hard work. Being a carer can affect many different aspects
Financial, including:
of your life and it is important to remember that you have needs as well.
Physical impact • Your ability to continue with paid work
Learning how to safely provide ‘hands on’ assistance for tasks such as • Support required from your employer to meet the demands of both
walking, personal care and getting in /out of the car can minimise your risk work and caring
of injury. Seek advice from a physiotherapist or occupational therapist. • Early retirement, adequate superannuation, life insurance and other
Independent Living Centres can also recommend equipment and aids to financial concerns.
make tasks easier.
Plan ahead for what resources will be required to maintain independence.
‘Manual Tasks Guide for Carers’ booklet, available from Investigate home modifications, professional caregivers and other
www.commerce.wa.gov.au/worksafe assistance that may be available. Home Instead Senior Care has a
number of booklets available to help you ‘start the conversation’, including:
It is important to look after your own health and to make time to stay • The 40/70 Rule (A guide to conversation starters for Adult Children
physically active as this will also help to prevent injury. If you do notice and Their Senior Loved Ones)
pain, weakness or any other signs of an injury, seek advice from a health www.homeinstead.com.au/resources/4070.html
professional as early as possible.
• When Seniors Say “No”! (Overcoming resistance to assistance)
Emotional/social impact www.homeinstead.com.au/WhenSeniorsSayNo.html
“
It is easy to become socially isolated as caring for someone can be
demanding. Make time to see family and friends and take part in activities
you enjoy.
Care for Yourself! Carers need to
• Keep in regular contact with positive people who understand your
challenges. For some people a support group is suggested
recognise the
• Contact the Carers Australia Carer Advisory Service on importance
1800 242 636 for practical advice and counselling
of having ‘you’
• Ask for and accept help from people you trust
• Involve family and friends
time. This means
• For respite, you could consider an external caregiver, available dedicating a short
through not-for-profit or private organisations.
period of time each
Monitor your stress levels. Use this caregiver stress meter test:
www.caregiverstress.com day to yourself.
14 15
More information for carers Arthritis Queensland
Arthritis Queensland is the peak body representing Queenslanders with
Arthritis Queensland has a wide range of information resources, public arthritis and osteoporosis. Our aim is to provide our clients with the best
seminars and workshops. Call the Free Helpline 1800 011 041 possible information, self management education and support, so they
Monday – Friday 9am to 4pm or visit www.arthritis.org.au. can ‘take charge’ of their condition. We also support carers and offer
specialised education to health professionals.
Commonwealth Respite and Carelink Centres are located around
Australia to help support people to continue living independently in their Arthritis Queensland advocates on behalf of Queenslanders with arthritis
and osteoporosis for better medical and general services, programs and
own homes. The Centres can also help to arrange respite care when
support. Our organisation also funds research.
carers need a break, including in-home, emergency and other flexible
respite options. Phone 1800 200 422 (all hours) or visit Our vision is ‘healthy bones and joints for all Queenslanders.’
http://www9.health.gov.au/ccsd/ For more information visit www.arthritis.org.au or call 1800 011 041
Carers Australia delivers the Carer Advisory Service,
which provides access for carers to counselling and
assistance to manage issues such as stress, loss and grief. Arthritis Queensland
Phone 1800 242 636 Monday – Friday, 9am to 5pm or visit www.arthritis.org.au
www.carersaustralia.com.au. 1800 011 041
Home Instead Senior Care provides professionally trained
CAREGivers who understand the care needs of someone Home Instead Senior Care
living with arthritis and can provide assistance in the home
www.homeinstead.com.au
at any time of the day or night. Home Instead has offices
throughout Australia. Visit www.homeinstead.com.au to 07 3720 8400
locate an office near you.
Independent Living Centres (LifeTec in Queensland) are located in
Home Instead Senior Care
some major cities and have displays of aids and devices that make daily
tasks around the house easier. For advice, including where to purchase Home Instead Senior Care provides high quality care services supporting
equipment, see www.ilcaustralia.org.au or call 1300 885 886. people to remain independent in their own homes. With 19 offices located
throughout Australia, Home Instead CAREGivers provide a range of
Physiotherapists and occupational therapists can advise you on services including companionship, personal care, light housekeeping,
the safest way to provide physical support to someone with arthritis. meal preparation, medication reminders, transport for appointments,
They will be able to assess your home environment for risks, advise shopping or errands.
on modifications and the range of assistive equipment available, and From 2hrs up to 24 hours seven days a week Home Instead CAREGivers
teach you how to perform manual tasks safely. Talk to your GP about a are trained to provide assistance to people living with arthritis or
referral to your local Community Health Centre, or contact the Australian other diseases.
Physiotherapy Association www.physiotherapy.asn.au or Occupational
Therapy Australia www.ausot.com.au. For more information visit www.homeinstead.com.au or call 07 3720 8400
to locate your nearest Home Instead Senior Care office.
16 17www.arthritis.org.au 1 Cartwright St (Cnr Lutwyche Rd) Windsor QLD 4030 PO Box 2121 Windsor QLD 4030 Ph: (07) 3857 4200 or 1800 011 041 Email: info@arthritis.org.au www.homeinstead.com.au Level 3 Toowong Tower 9 Sherwood Road Toowong QLD 4066 Ph: (07) 3720 8400 Email: info@homeinstead.com.au
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