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Informed Health Online [Internet]. Cologne, Germany: Institute for Quality and Efficiency in Health Care (IQWiG); 2006-.

Informed Health Online.

Fact sheet for family members of people with chronic obstructive pulmonary disease (COPD)

Last Update: February 2, 2012.

Foto von Ehepaar
COPD not only affects people who have it. Family members and friends also see how everyday life changes for people with COPD, and of course this affects their own lives as well.

What are the signs of COPD?

The first signals and symptoms of COPD are often not considered to be signs of a serious illness. This is mostly because COPD in the early stages hardly affects daily life.

Typical symptoms are:

  • Daily coughing over a longer period of time
  • Coughing up phlegm (mucus, medical term: sputum)
  • Breathlessness during physical activity
  • Breathing sounds such as wheezing and rattling
  • Frequent colds or flu

The first most common sign of COPD is coughing. Many people get used to their coughing, however. Smokers in particular often regard it as a supposedly harmless “smoker’s cough”.

When they experience breathing difficulties, breathlessness or shortness of breath some people have the feeling that they have to exhale with force or that their throat tightens. Sometimes their breathing is accompanied by wheezing or rattling noises. In more severe breathlessness people might tend to avoid physical activities such as climbing stairs or going for longer walks.

These can be signs of COPD. But coughing and breathing difficulties could also be symptoms of other diseases, such as asthma or lung cancer, for example. Therefore people should talk to their doctor to find out whether they really have COPD.

Healthy airways:

Graphic: Airways

What is COPD?

COPD is a condition in which the lungs have become permanently damaged and the airways are constantly narrowed. This makes it difficult to breathe.

People with COPD have a chronic inflammation in the bronchi of their lungs (chronic bronchitis) or the air sacs in their lungs are damaged (emphysema). They often have both at the same time.

If bronchi are chronically inflamed, they become swollen and less air can pass through them. A persistent cough and mucous congestion are often signs of an inflammation.

If the small air sacs in your lungs become damaged, the blood flowing through your lungs can no longer absorb as much oxygen or freely get rid of carbon dioxide, the waste product of breathing.

Graphic: Air sacs

How does the disease progress?

Symptoms like coughing and breathing difficulties usually get worse as the disease progresses. Daily activities such as walking, getting washed and dressed, and eating take more and more effort. Sometimes people with COPD will then need to be helped by other people. Some people with advanced COPD cannot go to work anymore.

In an advanced stage, COPD can even be deadly. How quickly COPD progresses varies from person to person and can hardly be predicted.

It is one of the characteristics of COPD that from time to time people with this disease experience attacks of severe breathlessness where their symptoms and lung function suddenly get much worse. These so-called exacerbations can be very frightening for everybody.

Any damage to the lungs is irreversible. So the treatment of COPD aims to limit further damage as much as possible by avoiding harmful substances like smoke, certain gases or dust, and by fully complying with the treatment. The treatment also aims to relieve symptoms.

What can the family expect?

COPD not only affects people who have it. Family members and friends also see how everyday life changes for people with COPD, and of course this affects their own lives, too.

It is not always easy to deal with the changed situation. Those who take care of people with COPD may, in some phases, find this quite burdensome or may have the feeling they themselves are not supported enough by others.

Situations can arise that are completely new and that have to be taken care of. It might become necessary to move to an apartment with an elevator, for example.

People with COPD often draw strength and will to live from their relationships to their family and friends. Most of them feel that their special situation is understood by their family and friends. They want their helplessness during a serious attack of breathlessness to be taken seriously and they value emotional support.

What does care mean for the family?

Looking after someone with COPD changes the life of the family carers – maybe only slightly in the beginning, but more and more so as the disease progresses. The disease can even become the center of their own lives, and some give up as many things as people with COPD. It can therefore be important to find out how much you can take and to accept your limits.

Looking after someone especially with severe COPD takes a lot of time and effort. It can be difficult to keep in touch with friends, and other personal concerns might have to take a backseat as well. Your own activities or holidays need to be carefully planned, for example, and you might have to organize another carer to stand in for you. It is usually the current state of the disease that determines daily life and whether or not activities are possible at all. This makes some family carers feel constrained. Sometimes they feel just as lonely as people with COPD or they find their lives boring. On the other hand, the new situation can also strengthen the relationship.

People with severe COPD may lose a lot of weight. In this case the carer will also have to make sure that the person eats enough. Severe loss of weight worsens the state of the disease.

Is there support for care?

When people with COPD can no longer manage their daily lives without help, they can apply for supportive care services. The doctor, the long-term care insurance or the social services department can help with the application. An assessor will then make an on-site visit to see whether the person with COPD needs help and, if so, how much. If the assessor finds that there is need for nursing care, you can claim financial support, service or a combination of both.

© IQWiG (Institute for Quality and Efficiency in Health Care)

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