Cancer is a frightening diagnosis, and not just for those affected themselves. Relatives can be just as psychologically burdened by the disease as the cancer patients. This is the result of a recent study. But there are offers of help.
It is not just the patient who suffers from a cancer diagnosis: their relatives can also be massively affected by mental stress, as the recently published study by an international research team shows. Especially in the first year after the diagnosis, certain groups are at high risk of developing depression and other disorders. German experts share this assessment. It is all the more important to pay attention to the mental health of relatives right from the start.
Cancer is the second leading cause of death in Germany – with around 230,000 deaths every year. According to the World Health Organization (WHO), tumors were responsible for almost ten million deaths worldwide in 2020. That number is likely to double by 2040, according to the International Agency for Research on Cancer (IARC).
For Germany, the Robert Koch Institute RKI assumes that the number of new diagnoses – currently around 500,000 per year – will increase. “Mainly due to the demographic development, an increase in new cancer cases of around 23 percent can be expected in Germany between 2015 and 2030,” says the previous edition of the “Cancer in Germany” report.
In view of these numbers, the burden on relatives is increasingly coming into focus. Because as a central source of emotional support and often also for care, the social environment is extremely important for the quality of life of cancer patients. Under certain circumstances, this can even affect the prognosis: A US study in 2013 showed that married patients have better chances of survival than unmarried patients.
However, for married couples in particular, cancer in their partner can sometimes be accompanied by serious mental disorders, as the study just published in the journal “JAMA Network Open” shows. In it, a team led by physician Qianwei Liu from the Swedish Karolinska Institute examined data on over three million people from two long-term, population-based surveys from Denmark and Sweden. It included 546,321 heterosexual spouses of cancer patients and 2,731,574 people whose partners did not have cancer.
The analysis found that nearly seven percent of partners of cancer patients developed a mental disorder during the follow-up period that was diagnosed and treated. For partners of people without cancer, the proportion was around five percent. The most common were depression, anxiety, and stress-related disorders. And the risk was most pronounced in the first year after cancer diagnosis.
This coincides with the experience of Beate Hornemann, head of the psycho-oncological service at the Dresden University Hospital: “Especially in the first year after diagnosis, the psychological stress can be particularly great, with families with small children, few social contacts and a poor socio-economic background being particularly at risk. “
After a diagnosis, numerous relatives would take on many, sometimes new tasks, adds Susanne Weg-Remers, head of the Cancer Information Service (KID). That could significantly change the division of labor in partnerships: “Everyday duties that were previously shared between two pairs of shoulders are now often concentrated on the relatives who are not ill.”
In addition, cancer is the diagnosis most feared in Germany, according to the results of regular surveys. “Cancer is an illness that no longer automatically equates to a death sentence, but that’s often the first association: Now I’m dying. And painfully,” explains Weg-Remers. Not only patients have these fears, but also their relatives: “Cancer is a disease of the whole family.”
Psycho-oncologist Hornemann speaks of cancer as a “we-disease” in which the condition of the patient is also influenced by the condition of the relatives. And these often show a comparable extent of psychological stress as in the patients themselves, as earlier studies from Germany have shown. “These are the same issues: loss of control, feelings of insufficiency, anger at one’s fate and feelings of guilt because the causality of the disease can often not be explained,” explains Hornemann.
According to the now published study, the risk of a mental disorder was particularly pronounced in spouses of patients who were diagnosed with cancer with a poor prognosis or in an advanced stage and if the patient died.
Broken down by type of cancer, diagnoses of oesophageal, lung, pancreas and liver cancer were more frequently associated with mental illness in the partner. The research also found that spouses of cancer patients aged 40 to 79 were at greatest risk. Spouses with lower incomes were more likely to develop mental health problems than wealthier ones. Pre-existing mental illnesses were also associated with a greater risk.
And finally, the risk was slightly higher in men than in women. For Beate Hornemann, who is also a member of the advisory board of the Psycho-Oncology Working Group of the German Cancer Society, men from the older generation actually have a greater risk of reacting depressively or even suicidally to an often advanced illness of their partner.
“I sometimes hear from them: If my wife dies, I’ll go with them,” she says. Such a statement is frightening, but it also means opening up the person concerned, with whom one can then seek a conversation. There are further warning signals when relatives withdraw from society. “This applies not only to spouses, but also to children,” says Hornemann. When dealing with children in particular, adults are often afraid of traumatizing them with the truth: “But they are more likely to be damaged if you lie to them instead of speaking to them in a child-friendly way.”
Basically, in the psycho-oncological treatment of relatives, it is central to address communication, emphasizes Hornemann. This applies above all with a view to the phenomenon of so-called “protective buffering” – meaning that one partner hides his feelings so as not to burden the other. “But that’s exactly what leads to distance in the partnership.”
The psycho-oncologist remembers a case from her practice: “A patient told me that her partner kept his distance, avoided tenderness and was very objective and distant overall. When asked about this, he said he was trying to do everything right and that his partner wasn’t doing it to annoy his needs.” Both would have had their own different assumptions: “If you don’t talk about it, the gap in the relationship will widen.”
In addition, according to Weg-Remers: If the entire focus is on the sick, there is little room for self-care for many relatives. Many do not know that in such a stressful situation they have the option of receiving psychosocial support themselves.
The Cancer Information Service (KID) provides information on this, for example, and offers individual advice by telephone and e-mail. Another offer of help is an online self-help program that is open to all relatives of cancer patients. This AOK Family Coach Cancer was developed by the German Cancer Research Center together with the University Hospital Leipzig. The psychosocial cancer counseling centers are also easily accessible, the addresses of which can be found on the KID homepage, or you can visit self-help groups. And finally, relatives can also have psycho-oncological treatment in the clinic or with established therapists.
Weg-Remers advises relatives to set up a support network. “Friends, acquaintances or neighbors often ask how they can help. You should definitely take advantage of that,” says the doctor. For example, if relatives had to spend a lot of time attending doctor’s appointments, friends could do the weekly shopping.
“It is also important to anchor in the relatives that it makes no sense if their battery is empty,” adds Hornemann. They have to identify what gives them energy and dare to say when they need time to themselves. “The sick are often the last to have no understanding of such a need,” affirms the psycho-oncologist. They often feel guilty because they believe they are blocking the lives of their loved ones. “If they then take their space, the patients also feel more comfortable.”
(This article was first published on Sunday, January 22, 2023.)
