Most people with arthritis wish to remain as independent as possible, so trying to find the right balance between providing help without being overly protective can be a challenge for carers. Here are some ways you can help.

Understand the impact of axSpA

In the same way that understanding their condition helps people with arthritis to cope, the more you understand about axSpA, the more you will be able to provide supportive care and assistance.  Learn about axSpA and how it is managed.

axSpA affects different people in different ways, but some common ways in which a person may be affected include:

Pain and stiffness

A person with axSpA may experience pain with certain movements or tasks, or it may be constant. It may be worse in the mornings or build up throughout the day.

The problem with the pain of axSpA is that it is ongoing. Living with pain can be difficult and make people irritable, angry and, at times, depressed.

Pain can be affected by external factors, such as stress, fatigue (tiredness) and mood. For example, people who feel depressed or anxious can be more sensitive to pain. They may feel less like doing their usual activities, leading to further muscle weakness and deconditioning. This can worsen pain and lead to a continued cycle of fatigue and depression.

Pain is often invisible but you may see some of the following signs that may suggest the person is in pain:

• Frowning, grimacing or wincing
• Guarding, rubbing or holding the sore body part
• Difficulty moving, or walking differently
• Mood changes, such as irritability, anger, aggressiveness
• Becoming withdrawn
• Disturbed sleep, tiredness
• Poor appetite

Doing regular activities

Stiff joints and muscles can be painful and make it difficult for a person to do their usual activities, for example:

• axSpA mostly affects the spine which might make it hard to get out of bed, sit for prolonged periods, bend down to put on shoes or socks.
• Sore knees and hips can make it difficult to get out of a char, walk up/down stairs, kneel, squat, stand or walk for long periods.

axSpA can also make hobbies and leisure activities, such as gardening, golf or travelling, more difficult. Symptoms can vary from day to day, making tasks that appear easy some days almost impossible on others. This can make it difficult to predict how much help will be needed.

Fatigue

Fatigue is often described as exhaustion or a lack of energy. Many people with arthritis experience fatigue, no matter what they have been doing or how much sleep they have had. For some people fatigue is more difficult to cope with than pain.  See Fatigue and arthritis.

Emotions

Many people with arthritis will experience emotions such as:

• Fear, of the impact arthritis is having on their life and what will happen in the future.
• Depression, anxiety, frustration.
• Loss of self-esteem and self-worth.
• Stress on relationships. It can be very difficult for a person with arthritis to watch someone doing something they saw as their job or having to be helped with tasks that are usually private. Pain and tiredness may also make connecting with family members and friends difficult.

Support arthritis management

Although there is no cure, many of the symptoms of axSpA can be well managed. As a carer, you can play an important part in supporting the person with arthritis to manage their condition with the right combination of exercise, medications, lifestyle changes and learning to cope.

Medicines

Medicines are one of the main treatments for axSpA. As a carer, you can help encourage the person with axSpA to:

• Understand why the medicine is being taken
• Find out what the possible side effects are
• Read all the medication labels and take medications as directed
• Keep a personal record of all medications being taken
• Talk to a doctor or pharmacist before taking any non-prescription medicines (including complementary treatments or ‘natural’ medicines)
• Avoid sharing medicines with friends and family members
• Talk to a doctor or pharmacist to answer any questions.

See Medicines and our Medication search for information on medicines for arthritis.

Healthy diet

The best type of diet for any type of arthritis is a balanced diet to maintain general health and healthy body weight. Being overweight will increase stress on joints, as well as pain and difficulty moving. Even losing a few extra kilograms can make a big difference so encourage the person with arthritis to eat a healthy, balanced diet.  See Healthy eating.

Exercise

Exercise is one of the most important treatments for axSpA. Regular physical activity can reduce pain, maintain joint mobility, strengthen muscles and improve overall health. As a carer, you can encourage the person with axSpA to:

• Talk to their doctor, physiotherapist or exercise physiologist before starting an exercise program. This will help ensure they are doing the right exercises and with the correct technique, to prevent further injury or pain.
• Make exercise a daily habit.
• Exercise when they have the least amount of pain and stiffness, and when medicines are having the most effect.
• Move regularly. Try to allow the person with arthritis to do as much of their normal daily activities as they can.

See Physical activity and exercise.

Dealing with pain

There are many things you can do to manage pain so encourage the person with axSpA to try things such as:

• Using heat or cold packs on sore joints and muscles
• Relaxation techniques
• Distraction techniques (focusing attention on something other than the pain).

Learn to recognise the signs of pain. If the person with arthritis is having a ‘bad day’, be patient, provide extra support, and help them to use one of their preferred pain management techniques.

See Dealing with pain.

Joint care and fighting fatigue

Looking after sore joints during daily activities can help reduce pain, stress and tiredness. It involves:

• Spreading activities throughout the day, to give rest periods.
• Finding a different way of doing activities or movements that cause pain.
• Learning about equipment that can make daily tasks easier.
• Seeing an occupational therapist (OT) for advice.
• Learning techniques to help get a good night’s sleep.

See Fatigue and arthritis for tips on managing fatigue.

For practical tips and information on making daily tasks easier, check out our At home with arthritis: simple steps for managing in the home booklet.

There are many products with useful features that can be purchased to help you protect your joints and make daily tasks easier.

Complementary therapies

There are many complementary or ‘natural’ treatments available for arthritis, such as vitamin supplements and herbal medicines. Some of these may work but most are lacking any scientific proof to support their use. Others have been shown to be ineffective, whilst some are not safe. All treatments, even ones that are classed as natural, can have side effects and interact with other treatments. These interactions can cause serious health problems or make prescribed medication less effective. As a carer, you can help in these ways:

• Do not pressure the person with arthritis to try treatments that have not been well proven.
• If the person with arthritis is interested in using complementary therapies, encourage them to discuss them with their GP or rheumatologist.

See Complementary treatments and therapies.

Emotional wellbeing

It is normal for people with axSpA to experience a wide range of feelings and emotions. As a carer you can help in these ways:

• Start the conversation. It can be difficult to know how to help someone who appears to be in need. Choose the right time, indicate that you’ve noticed a change in their behaviour and let them know you’re there to listen without being judgemental.
• Encourage them to focus on positive experiences and what they can do, rather than things they find difficult.
• Support them to seek help from a health professional, such as a psychologist or counsellor, if negative emotions are interfering with everyday life.
• Try to keep planning social activities and other events they enjoy.

See Emotions.

Communicate effectively

Good communication is essential. It is important that you and the person with axSpA are able to discuss how you are both feeling. You need to agree how to work together so that the person will feel able to ask for extra help when needed, and to turn it down when not.  Communication is also important so you can judge how the person you are caring for is feeling and respond sensitively.

Taking care of the caregiver

Caring for someone with axSpA can affect many different aspects of your life as well as theirs.  It is important to take care of yourself and your needs as well.

Learn how to safely provide ‘hands on’ assistance for tasks such as walking, personal care and getting in and out of the car, to minimise your risk of injury.  Look after your own health and remember to take the time to see family and friends and take part in activities you enjoy.

Services and support

Arthritis is the second leading cause of disability in Australia. If you care for someone living with arthritis, there is a variety of care and support services available to help.

Physiotherapists and occupational therapists can advise you on the safest way to provide physical support to someone with arthritis. They will be able to assess the home environment for risks, advise on modifications and the range of assistive equipment available, and teach you how to perform manual tasks safely. Talk to your GP about how to access a health professional, or find a health professional here.

Department of Human Services will be able to determine your eligibility for carer or disability support, as well as other concessions such as a Health Care Card. Visit www.humanservices.gov.au

Commonwealth Respite and Carelink Centres (CRCC) provide free and confidential information on local carer support, disability and community services. They can also link you in to short-term, emergency or regular respite care services. Call 1800 052 222 during business hours or 1800 059 059 outside business hours.

Carers Australia provides access for carers to counselling and assistance to manage issues such as stress, loss and grief. Call 1800 242 636 or visit www.carersaustralia.com.au

beyondblue has excellent resources and support services for people experiencing mental health challenges. Visit www.beyondblue.org.au or call the Support Service on 1300 22 4636 to talk to trained mental health professionals.

My Aged Care website and contact centre can help you understand what programmes and support services are available. Call 1800 200 422 or visit www.myagedcare.gov.au

See our Caring and Arthritis booklet in additional resources for practical advice for carers and people living with arthritis.

This information has been developed in collaboration with Home Instead Senior Care.