Caring for a Person with Arthritis
An Information Booklet
About this booklet
This booklet is designed to help you care for someone with arthritis, either as a family member or as a friend. It will help you understand more about arthritis and about the usual problems that affect people with arthritis. As well as discussing in general what caring involves, the booklet suggests how you can offer practical help to someone with arthritis. The most important thing is to realize that there are no rights and wrongs in caring for someone who has arthritis, and there are as many ways of coping with arthritis as there are people with arthritis. The booklet covers the most common questions which carers ask, and gives some sources of further support and information.
How can a carer help someone with arthritis?
Looking after and caring for someone with arthritis is a challenge. You need to achieve the right balance between providing support and motivation without being overprotective. Most people with arthritis will wish to retain as much control over their lives as possible, and you need to help them to retain their independence. This might mean that in certain circumstances help may not be wanted. This can be difficult to judge and you must be sensitive to signs, which may not be verbal, that indicate you should stand back and not insist on helping with a particular task or activity.
There are four main ways in which you can help:
- Understand what arthritis means – what causes it, how it develops, and how it affects people. In the same way that understanding their condition helps people with arthritis to cope with it, the more you understand about arthritis the more you will be able to provide successful care and support.
- Communicate effectively. Good communication in both directions is essential. The person with arthritis needs to feel well supported and may also need reassurance that you do not resent the responsibility falling on you.
- Offer practical help with the treatment. This may mean helping the person to take their medications or assisting with recommended exercises, activities or therapies that they have found helpful in reducing the symptoms of their arthritis.
- Support the person with arthritis in applying for any benefits and advice they may be entitled to. There are a number of benefits that they may not be aware of (see 'Are they getting the benefits they are entitled to?').
We will look at each of these aspects in more detail in the following sections.
Understand what arthritis means
It is important that arthritis is diagnosed by a doctor (often a rheumatologist, but sometimes a general practitioner). This is because there are many different types of arthritis, and treatments differ according to which type of arthritis a person has. Doctors often divide the different types of arthritis into two groups:
- problems caused by inflammation (e.g. rheumatoid arthritis or ankylosing spondylitis)
- 'mechanical' problems or wear and tear (e.g. osteoarthritis or mechanical back pain).
The table below lists the main types of arthritis in each group. There is an Arthritis Research Campaign (arc) booklet on each of these which explains how the condition develops and describes the main treatments. Most forms of arthritis run a very uneven course with day-to-day variation, and you need to be aware of this. The outlook is also very variable and difficult to predict. The arthritis can occasionally become very bad, or it can go away completely, but most people experience something in between. A person who has arthritis needs to be able to cope with the different symptoms that arthritis can cause.
| Group
1 Inflammatory |
Group
2 Non-inflammatory |
|---|---|
|
|
How can arthritis be treated?
Treatment is available for all types of arthritis. Many of the symptoms of arthritis can be managed through the right combination of exercise, drugs, lifestyle changes and learning to cope.
How does it feel to have arthritis?
Arthritis affects different people in different ways, and there are no right or wrong ways to feel. It can make someone feel pain, stiffness, tiredness or frustration. Frequently they may experience several of these symptoms at once. The problem with the pain of arthritis is the fact that it goes on day in, day out. If asked to put up with it for a few hours, most people would cope. Facing it on a regular basis is not so easy. Most people will get some relief from their pain once they start treatment. As arthritis varies in an unpredictable way, people need to find their own way of coping. Learning about the disease is an important factor in coping, and a specialist rheumatology health professional will often help with this by teaching patients about the condition. Information can also be gained from booklets like this one.
Figure 1. A combination of factors can help relieve the symptoms of arthritis.
Communicate effectively with the person who has arthritis
Good communication is essential. It is important that you and the person with arthritis discuss how you are both feeling. You need to agree how to work together so that the person will feel able to ask if they need extra help, and to turn it down if they don't. Sometimes you may have to stand back and watch your partner, child, friend or colleague struggle to achieve a goal that is important to them. Try to respect their wishes, allowing them to maintain their self-esteem. Communication is also necessary so that you can judge how they are feeling and respond sensitively. Carers have suggested the following practical hints:
- Learn to recognize the signs when the arthritis is bad, as extra support may be needed at this time. Remember that pain can make people irritable, angry and depressed at times.
- Be patient if the other person has to do things differently and not as quickly as before. They may find it difficult to carry out normal everyday activities such as housework, picking up a telephone or using a knife and fork. They may find it embarrassing to talk about the difficulties they face, especially if personal issues like washing or dressing are involved. If you notice changes in the way the person behaves it may be because they need help with these activities, and either you or a health professional may be able to help by raising this issue tactfully.
- Do not allow yourself to become isolated. Make sure that you still see your family and friends and take part in the activities that are important to you. Find time for yourself. Roles may have to change within the home and at work. This needs to be discussed and you may need the support of a trained health professional such as a specialist nurse or an occupational therapist. Be sensitive to the feelings of the person who has arthritis – it is very difficult, for example, to sit and watch someone else doing something that you saw as your job.
- Join in the exercises or other activities so that they become shared activities. Encourage the person to find other activities to replace ones which they can no longer manage. Doing useful work can make some people feel better – they might, for instance, involve themselves in voluntary work, or start an educational course.
- Remember that you have needs as well. Caring can be hard work. At times you may feel irritable and depressed. This is normal and understandable. If it appeals to you, join a local support group. You can also get advice from Carers UK (see 'Useful addresses').
Figure 2. Communication is essential.
Offer practical help with the treatment
You have an important part to play in supporting and helping the person to cope with their arthritis. The most common practical questions we receive from carers are shown below.
How can a carer help with the pain and stiffness?
- Be aware of how the different drugs work and what is a reasonable expectation of how effective they will be. If the prescribed painkillers are taken only when the pain is very bad and they are not providing adequate relief, then they may work better by being taken regularly, or they may need to be reviewed by the doctor.
- Pain may be eased either by warming or by cooling the painful area. Wrap a hot-water bottle or an ice pack (or bag of frozen peas) in a towel and hold it against the painful joint for 10–15 minutes.
- Pain makes muscles tense and more painful. Relaxation, massage and yoga can help. Join in – you may enjoy it too!
- Regular movement is needed to stop the joints becoming stiff and painful. (See arc leaflet 'Keep Moving'.) Try not to be overprotective: encourage the person with arthritis to do as much as they can to keep the joints mobile.
- Space out daily activities instead of trying to do everything in one go. This can help reduce pain and stiffness and still enable activities to be carried out successfully.
- Encourage regular movement. Sitting in the same position for too long can increase stiffness.
- Find non-physical ways of occupying the mind.
- If a particular activity is causing problems, encourage the person to find a different way of doing it. There usually is one. For example, carrying shopping is better done in two small bags than one big one. If that is impractical then a wheeled trolley can be used. Alternatively, is there somebody who could help with shopping trips by sharing transport? Or check whether any local supermarkets offer a delivery service – some schemes allow you to shop as usual at your local store and have the items you choose delivered to your home later in the day. If there are problems with activities around the home then a visit from an occupational therapist for advice on aids and adaptations can be very helpful. Ask your GP or hospital rheumatology department ( or see the arc leaflet 'Occupational Therapy and Arthritis') for more information about this. The arc booklet 'Looking After Your Joints When You Have Arthritis' also gives some ideas on alternative ways of doing everyday tasks.
Figure 3. A hot-water bottle wrapped in a towel can be helpful for pain in the muscles or soft tissues.
How does arthritis affect a person's mood?
It is normal for people with arthritis to experience a wide range of feelings and emotions. They may be tearful, or angry, or upset among other emotions. Encourage them to focus on positive experiences and think about what they can do rather than things they have difficulty with.
Should a carer encourage exercise?
Yes – it is very important to keep the joints moving to minimize pain and stiffness. Try to encourage exercise as a daily habit. Swimming and cycling (it can be on a static bike) are good exercises. Physiotherapists are the experts in this area, but the person with arthritis may have their own preferences about exercise and should be encouraged to express them. If you join in the exercises then this can become more of a social activity and less of a chore. It is important to start gradually with any exercise and increase the amount over time as the body adjusts to the extra requirements being made of it. (See arc leaflet 'Keep Moving'.)
Figure 4. Joining in with exercises can help.
Is it natural for the person to feel tired?
Most people with arthritis will find they get tired more easily, particularly if they have rheumatoid arthritis. For some people the tiredness is more difficult to cope with than the pain. Tiredness can be reduced by:
- spreading activities throughout the day
- doing regular exercise
- establishing a regular sleep pattern – for example, going to bed at the same time each night.
See arc leaflet 'Fatigue and Arthritis' for further information.
Is it necessary to take the drugs?
Drugs are one of the main treatments for reducing the effects of arthritis. They are usually divided into:
- fast-acting 'first-line' drugs, which treat the symptoms of pain and stiffness and can be used for most types of arthritis
- slow-acting 'second-line' drugs, which are intended to modify the disease itself (disease-modifying anti-rheumatic drugs, or DMARDs, and biologics) – these are used only in inflammatory types of arthritis.
(See arc booklets on specific conditions and leaflets on drugs for arthritis.)
As far as treatment of symptoms is concerned, the person with arthritis is in the best position to weigh up the benefits of taking tablets such as painkillers (analgesics) or non-steroidal anti-inflammatory drugs (NSAIDs). This should always be discussed with a doctor or nurse specialist, who will be able to give good advice about the benefits and possible side-effects of each of these drugs. If the doctor offers these drugs to relieve symptoms, it is usually worth trying them to see whether they help and then discussing with the doctor whether to continue with them.
The drugs given to modify the disease itself must be taken as prescribed, or variations in their use agreed with a doctor. For example, allopurinol for gout has to be taken continuously or it may make the attacks worse. Prednisolone must not be reduced too quickly or stopped suddenly as this can be dangerous. Most 'second-line' drugs for rheumatoid arthritis (sulfasalazine, leflunomide and methotrexate are examples) need to be monitored with blood and/or urine tests as a precaution against side-effects. Everyone is different, so if one drug proves to be unsuitable there is often a satisfactory alternative.
Are there any foods that will help?
It is important for everyone to eat a balanced diet with plenty of fruit and vegetables for general health. People with arthritis should particularly avoid putting on weight – being overweight will increase the stress on the joints. Some people with arthritis do seem to benefit from making changes to their diet, though there is no single diet which helps with all types of arthritis. For more information see the arc booklet 'Diet and Arthritis'.
Figure 5. It is a good idea to eat a healthy diet and avoid putting on weight.
Does arthritis affect how people feel about themselves?
Having arthritis can make some people feel less confident in themselves. Your support, if wanted, can increase their confidence and help them to maintain an active social life. This is important for your well-being as well as for the person who has arthritis.
Are they getting the benefits they are entitled to?
There are a number of important benefits and various places where you can seek advice on these. If somebody with arthritis is having difficulty with work, they can arrange an appointment with a Disability Employment Adviser (DEA). These advisers can be contacted through a Jobcentre Plus office and can provide advice on adaptations, support and retraining. There may also be a doctor or health adviser at the person's place of work who could help.
Benefits that people with arthritis may be able to claim include:
- Disability Living Allowance (for people under the age of 65 years)
- Attendance Allowance (for people over the age of 65 years).
To qualify for these benefits, the person must either have difficulty walking or carrying out self-care activities such as dressing or bathing, or need help from another person with these activities. Most people with arthritis find that the degree of difficulty experienced with these activities, and the amount of help required, varies from day to day. It is important that someone with arthritis describes how they feel on a bad day, when the condition is at its worst, when being assessed for these benefits. A local Citizens Advice Bureau can help complete the forms to apply for these benefits. Or your county/city council may have a welfare rights department which can help. If the person with arthritis gets Attendance Allowance or certain rates of Disability Living Allowance, you, as a carer, may be able to apply for Carer's Allowance.
Figure 6. Disability Employment Advisers can be helpful.
More information can be obtained from the Benefits Enquiry Line (see 'Useful addresses'). If you get a bad response from the agency assessing a claim, try not to take it personally. You may wish to appeal against an adverse decision, but, in any event, try not to let it upset you.
Practical help may also be available from your local social services department if the arthritis is causing substantial difficulties in everyday activities (see 'Useful addresses').
Applying for a disabled parking permit may be very important in helping the person with arthritis to travel, for example, to hospital appointments. Local councils are responsible for issuing 'Blue Badge' parking permits. Many people with arthritis continue driving with suitably modified cars and this can help them to maintain independence. It is vital to get sound advice before having any modifications made. Ricability produce some useful guides. Alternatively, contact a specialist mobility centre to arrange an individual assessment – there is normally a fee for this (see 'Useful addresses').
Where can a carer obtain more advice and support?
Many hospitals have rheumatology health professionals who can provide support and information to carers as well as to patients. If you spend a substantial amount of time caring for somebody on a regular basis you can ask the social services department of your local council for a carer's assessment. Depending on the outcome of the assessment you may be able to get access to services to help you in your caring role. Voluntary organizations such as Carers UK can provide information on what help is available and how to apply (see 'Useful addresses'). There may be a support group in your area where you can share information with other carers in a similar situation. Most people feel better for sharing feelings and concerns rather than keeping them bottled up inside. It is natural for you, as a carer, to feel anger and resentment at times (because your life has changed too) and sharing these feelings can make it easier to move forward.
Useful addresses
The Arthritis Research Campaign (arc)
PO Box 177
Chesterfield
Derbyshire S41 7TQ
Phone: 0870 850 5000
www.arc.org.uk
As well as funding research, we produce a range of free information booklets and leaflets. Please contact the address above for a list of titles or, on this web site, see Publications for People with Arthritis.
Arthritis Care
18 Stephenson Way
London NW1 2HD
Tel: 020 7380 6500
Helpline: 0808 800 4050
www.arthritiscare.org.uk
Offers self-help support, a helpline service, and a range of leaflets on arthritis. The website includes a number of pages specifically for carers.
Benefit Enquiry Line (for people with disabilities
– run by Department for Work & Pensions)
Phone: 0800 882200
www.dwp.gov.uk
Carers UK
20 Great Dover Street
London SE1 4LX
Phone: 020 7378 4999
Carers Line: 0808 808 7777
www.carersuk.org
Provides information and advice to carers, and aims to raise awareness of carers' needs.
Citizens Advice
Can provide advice on benefits and help with filling in application
forms. To find your local office look under 'Citizens Advice Bureaux' in the telephone directory or Yellow Pages, visit the Citizens Advice website, or contact Citizens Advice head office:
Phone: 020 7833 2181
www.citizensadvice.org.uk
Dial UK (Disability Information & Advice Line)
St Catherine's
Tickhill Road
Doncaster DN4 8QN
Phone: 01302 310123
www.dialuk.org.uk
The helpline will put you in touch with a local office for information in your area.
Forum of Mobility Centres
c/o Providence Chapel
Warehorne
Ashford, Kent TN26 2JX
Phone: 0800 559 3636
www.mobility-centres.org.uk
A network of independent organizations offering information, advice and driving assessments to people with a disability or illness which affects their mobility.
NCH the children's charity
Central Office
85 Highbury Park
London N5 1UD
Phone: 020 7704 7000
www.nch.org.uk
Runs young carers' projects around the country.
nras (National Rheumatoid Arthritis Society)
Unit B4 Westacott Business Centre
Westacott Way, Littlewick Green
Maidenhead SL6 3RT
Phone: 0845 458 3969
Helpline: 0800 298 7650
www.rheumatoid.org.uk
A national charity which focuses specifically on rheumatoid arthritis.
Queen Elizabeth's Foundation Mobility Centre
Damson Way
Fountain Drive
Carshalton, Surrey SM5 4NR
Phone: 020 8770 1151
www.qefd.org/
Offers car adaptation and driving assessments for people with mobility problems.
Ricability
30 Angel Gate
City Road
London EC1V 2PT
Phone: 020 7427 2460
www.ricability.org.uk
A consumer research charity which produces reports on household aids, appliances and mobility products, as well as general guides such as 'Motoring with Arthritis'.
Social Services
Social Services can provide practical support such as Meals on Wheels
or home help in certain cases. Look in the telephone directory under
the name of your city or county council.
Information on drugs
Separate arc leaflets are available on many of the drugs used for arthritis and related conditions. We would recommend that you read the relevant leaflets for more detailed information about your medication.
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