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Caring and illnesses

Caring for someone with a condition

As a young carer, you'll probably want as much information as possible about the condition of the person you care for. Don’t be afraid to ask questions. Not knowing about a condition and what might happen can be much more worrying than having the information.

It's worth talking to the person who has the illness or disability to find out how it affects them. You could also talk to any doctors, nurses, social workers or other people who help that person.

You'll find reliable information on the illness or disability on the Carers Direct website, but you should also read the NHS Choices guide on how to find reliable and accurate health information online.

Online support workers at websites for young carers (such as youngcarers.net) could also provide answers to your questions about caring. You can post messages to other young carers and share your experience with people in similar situations. These websites can help you find out about a young carers service near you.

Below you'll find information on caring for people with:

  • arthritis,
  • cancer,
  • cerebral palsy,
  • dementia,
  • multiple sclerosis, and
  • stroke.

In other pages in this section you'll find information on caring for people with:

Can I catch it?

If you're looking after a relative who is ill, it's natural to worry about their health problems and to wonder if the same thing will happen to you in the future.

If you're worried about illness:

  • Talk to the person you care for. They may not talk to you openly about their condition because they may feel it would upset you. Explain your concerns to them and how you feel not knowing about their illness.
  • Talk to adults you're in contact with through caring, such as doctors or social workers. They'll be able to tell you which illnesses you can catch and which you can’t.
  • Ring the NHS Direct 24-hour helpline on 0845 4647. They can give you information and advice on all health-related problems.
  • Ring ChildLine on 0800 1111. It’s a free and confidential helpline for children and young people, and you can talk to them about anything.

Your chance of getting the same illness as a relative depends on the type of condition they have. Many illnesses are caused by factors such as what people eat or drink, how much exercise they do and whether they smoke. These are called environmental factors.

Other conditions are simply down to a person’s age. Your body wears out over time and, as you get older, you may not be able to get about as quickly.

However, some illnesses, such as some cancers, are hereditary, which means they can be passed on to you through your genes. Others, such as flu or hepatitis C, are contagious, which means anyone can catch them.

Find out more about different conditions in Health A-Z. Search for a condition by clicking on the part of the body that's affected or search alphabetically by the name of the illness.

Protecting yourself

As a young carer, you shouldn't be expected to take on a demanding caring role. However, there are times when it may help to know how to protect yourself from a contagious disease.

If the person you care for has a contagious disease, take extra care not to touch any blood or other bodily fluids. For example, be careful when handling anything, such as bedding, that may have come into contact with bodily fluids. If you have a cut, wear a clean plaster or bandage or gloves to protect yourself.

You shouldn't need to touch needles or syringes that are needed by the person you look after. However, be aware that:

  • A needle and syringe should only be used once.
  • Caps should never be put back on needles.
  • Needles should never be taken off syringes.
  • Used needles should not be bent or broken.
  • Used needles should not be put in the bin. They must go in a clearly marked safe container.

Caring for someone with arthritis

Arthritis is a painful problem which affects the joints, such as knees, hips and ankles.

The pain of arthritis can either be sharp and stabbing or a dull ache and can vary from day to day. Some people say the cold and damp can make their arthritis worse.

Ordinary tasks can become difficult. The person is in quite a lot of constant pain so can become very tired and sometimes get upset or angry. The skin around the joint can become swollen, hot to touch and red.

Arthritis can be caused either by the tissues between the bones gradually wearing away causing the bones to rub together (known as osteoarthritis), or by the body’s immune system attacking a joint causing swelling and pain (known as rheumatoid arthritis).

Osteoarthritis usually affects people over 50. Repeated movements of the same type, being overweight or a previous injury to the joint can all be causes. Rheumatoid arthritis can affect younger people, more usually women, and researchers think it may be inherited.

People with arthritis can get access to a variety of treatments to help deal with and manage the pain. Painkillers reduce the pain while anti-inflammatories reduce the painful swelling around the joints. Physiotherapy and exercise can help reduce the pain from arthritis and stop the symptoms getting worse.

Sometimes surgery is an option, especially for patients with osteoarthritis in the joints, such as the hip and knee. The joint can be removed and replaced with an artificial one, which helps the patient lead a more pain-free life.

Rheumatologists are doctors with specialist knowledge of arthritis (usually rheumatoid arthritis) and its treatments.

Orthopaedic surgeons have specialist knowledge of working with joints and can advise someone with arthritis (usually osteoarthritis) about surgery available to them.

Occupational therapists will decide if the person with arthritis needs special equipment to help them be independent and return to their homes.

Physiotherapists are trained to help someone learn how to do physical tasks, such as picking things up or walking. They'll help the person with arthritis become more mobile and independent again by giving them lots of exercises to do.

Caring for someone with cancer

Cancer is caused when normal body cells start to divide and grow uncontrollably. The dividing cells create a lump called a tumour.

'Benign' tumours are harmless and normally only need to be removed if they grow too big or cause pain or problems for other body parts nearby.

'Malignant' tumours can grow into nearby body parts so it can be difficult and sometimes impossible to remove them. The tumour can also spread and grow in different parts of the body. Sometimes a cancer is not a tumour but is found in the bone marrow or lymph nodes.

The terms 'primary' and 'secondary' cancer are used to describe what type of cancer people have. Primary cancer refers to the place where the cancer starts. Sometimes the cancer cells break away from this area and are carried by the blood around the body to form new tumours somewhere else. These new tumours are called secondary cancers.

Symptoms

The symptoms of cancer vary enormously according to the type of cancer. A lump found in the body is one sign, but some lumps can be non-cancerous. Many people notice a small change in the part of the body where the cancer starts. Others feel unwell, suffer from breathlessness and have unexplained bleeding and weight loss.

Lots of research is going on into what causes cancer. People who smoke, for example, are much more likely to develop cancer. The chance of getting cancer increases as we get older, but not all old people get cancer. Scientists have found that if we keep fit and healthy by eating well, exercising and being a sensible weight, we reduce our chances of getting many cancers.

Some cancers are inherited. This doesn’t mean that someone with a parent with breast cancer will automatically develop it themselves. It may just mean their risks are higher than for someone without a parent with breast cancer. In this situation, doctors would be happy to talk to anybody who's worried about this and to discuss options with them.

Usually a family doctor (GP) will refer someone to a hospital where they can get specific tests to find out whether the symptoms are a sign of cancer and, if so, what type of cancer it is.

Treatment

Someone with cancer will usually have a doctor called an oncologist who supervises their care and works with them to decide how to treat the condition.

There are many different treatments depending on the type of cancer and how advanced it is. A cancer patient may need surgery to remove a tumour. Sometimes surgery will be used with chemotherapy and radiotherapy.

Chemotherapy involves an injection of powerful medicine to destroy the cancerous cells. Sometimes this is used to shrink the tumour before it’s removed by a surgeon. Chemotherapy has a range of side-effects and can make people feel very tired and cause some people to lose their hair and to be sick.

Radiotherapy focuses high-energy X-rays on the tumour to help destroy it. Sometimes chemotherapy and radiotherapy are used together.

Nursing

People with cancer need more care than just medicine, surgery or radiotherapy. They'll need practical, physical and emotional support which can be provided by specially trained and experienced nurses, called Macmillan nurses. Their role is to give advice and support to the person with cancer and they can also provide help to the whole family.

Once the person with cancer is at home, district nurses are responsible for helping and social workers may also be involved and can arrange for extra help in the home if someone is very ill.

Caring for someone with dementia

Dementia covers a number of conditions which cause problems including memory loss, poor attention and difficulty understanding, communicating or problem-solving. Alzheimer's disease is one such condition.

These conditions are more common in older people and get worse over time. In some patients dementia occurs quickly but in others it takes years.

Lots of research is being done to find out what causes dementia and what might prevent it. One type of dementia (vascular dementia) is caused by blocked arteries stopping blood getting to brain cells.

Most people who have dementia experience memory loss. This can range from simple things (like forgetting what shopping they needed) to more serious things (like forgetting what year it is or who family members are). It's also common for some people to forget things from their short-term memory (like what they did yesterday) but remember things from their long-term memory (like the day they got married).

Mood swings can be a common symptom because parts of the brain that control mood and emotion are affected by the disease. Sometimes communication is difficult for people with dementia and they can also experience a lot of confusion.

As the dementia gets worse, it becomes harder to do everyday things, but there are a number of people who can help make things a little easier. District nurses help people in their own homes with medication and general nursing duties. Community psychiatric nurses are specially trained to deal with mental illness and can help both the person with dementia and the family who are helping look after them. Carers of people with dementia could also try talking to their family doctor, who may be able to help both the patient and their family.

Unfortunately, dementia cannot be cured, but medicine is available to help people’s symptoms at various stages of the illness. A doctor or nurse should be able to provide carers with more information about this and whether it would help the person with dementia. Puzzles, memory games and even computer games can help with memory loss.

Caring for someone who has had a stroke

A stroke happens when the blood supply to the brain gets interrupted or stopped temporarily. The cells in the brain begin to die as they're starved of oxygen and blood.

There are many symptoms of stroke, including weakness or numbness down one side of the body, problems talking or eating, difficulty understanding what other people are saying and severe headaches.

Act fast

It's vital that someone wo might be having a stroke gets help as quickly as possible (usually by calling 999) as this can make a big difference to how much damage a stroke causes. A person who has had a stroke will almost certainly be taken to hospital and assessed by doctors.

Many people who have had a stroke find they can no longer do some of the things they could before. They may be very forgetful and unable to remember things or people from before the stroke. Because of these changes, they may get quite upset or depressed. They may worry about how to do the things they used to be able to do. Many of these difficulties and worries can be helped by specialist staff at the hospital.

Strokes are most common in people over 65, but anyone who smokes, is overweight or has a family history of heart disease or diabetes could be at increased risk of suffering a stroke. Some people with irregular heartbeats may also be susceptible to strokes.

If the person is able to get to hospital quickly, drugs that dissolve blood clots can really help reduce the damage from a stroke. There's a range of medication which can help reduce a person's chances of having another stroke. These include drugs to lower someone’s blood pressure or cholesterol levels. With some types of stroke, surgery may be needed to remove blood from the brain and repair burst blood vessels. With help, someone who has had a stroke may be able to learn how to lead an independent life again.

Rehabilitation

There are lots of people who can help someone who's had a stroke. Physiotherapists are trained to help the person learn to do physical tasks again, such as picking things up or walking. They'll help the person who had the stroke become more independent again by giving them lots of exercises to do.

Speech therapists help with communication skills and talking. Occupational therapists will work out if the person who had the stroke needs special equipment to help them be independent and return to their home. Counsellors may be available to listen to and help the person come to terms with the physical and emotional effects of the stroke.

Caring for someone with multiple sclerosis

Multiple sclerosis (MS) is a condition that damages a person’s nervous system, leading to pain, tiredness, dizziness and problems with walking, seeing and speaking.

There's no single list of symptoms and the illness can change from day to day, making it difficult in the early stages for doctors to decide if a patient actually has MS.

Scientists think genes play a part in it and that, in some cases, relatives of a person with MS may go on to develop it themselves. It's more common in colder countries and researchers also think other illnesses could trigger the disease.

There are three main types of MS:

  • Relapsing remitting MS. The is the most common form of MS. People have times when their symptoms are quite bad (known as relapses), and other times when they seem OK again (known as remission). These times can last for months and continue throughout a person’s life.
  • Secondary progressive MS. This is when someone has periods of both relapse and remission but over time their condition gradually gets worse and some symptoms don’t go away at all.
  • Primary progressive MS. This is when symptoms continue to get worse with no improvement or periods of remission.

Once someone has been diagnosed with MS, depending on what their symptoms are they could get help from many people, including:

  • Neurologists, who are doctors that deal with problems of the nervous system. They're responsible for treatment and medication.
  • Physiotherapists, who will help someone after a relapse learn how to use their body again. They might teach them exercises to build their strength up again.
  • MS nurses, who have specialised knowledge and training in helping people with MS and their families too.
  • Occupational therapists, who will help the person with MS to lead as independent a life as possible. For example, they could find out about specialist equipment or help with adaptations in the house.
  • Social workers, who can arrange a care package for the person and their family to help them cope with MS. They can also organise care workers to come and help at home. Social workers should also find out how everyone else in the family is coping and what help they might need.

There's no cure for MS, but if someone has MS their life can be greatly improved by managing the symptoms. Medicine called steroids can help somebody recover from a relapse and are usually given as part of a hospital treatment. For some people with MS, drugs can reduce the number of relapses they get. These can be taken at home by injection.

Caring for someone with cerebral palsy

Cerebral palsy affects movement and co-ordination and is caused by damage to the brain, either before or during birth. Sometimes a baby’s brain doesn't develop, leading to some or all of the symptoms listed below. Sometimes problems during birth or an infection or head injury in young babies can cause the brain to become damaged, resulting in cerebral palsy.

Cerebral palsy affects people in a number of different ways. The most common symptoms are problems with muscle control and difficulties with co-ordination; difficulty sitting or standing without help; difficulty with eating, swallowing or talking, and problems with sight or hearing.

A range of treatment is available to people with cerebral palsy. This could include medication to help reduce symptoms such as twitching or jerking movements, or to relax stiff muscles. A speech therapist can help a child with cerebral palsy to speak or use sign language, and a physiotherapist will use exercises to help with stiff muscles and mobility problems. Surgery might help if problems with bones and muscles are causing someone pain.

Watch the film below about fourteen-year-old Ria's and eight-year-old Lea's mum, Reesha, who has cerebral palsy.

Being a parent with a disability

Reesha has two daughters Ria, 14, and Lenna, 8. She also has cerebral palsy, a condition that affects movement and co-ordination. Reesha describes the challenges she faces as a parent with a disability.

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Last reviewed: 16/04/2024

Next review due: 16/04/2024

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