Course of anxiety, depression and quality of life in relatives of patientswith Creutzfeldt-Jakob-Disease

Creutzfeldt Jakob-Disease (CJD) is a rapidly progressing fatal disease. Mos t patients will not know the diagnosis, they leave reality in an early stag e and go into dementia. The most afflicted persons are their relatives. The y are forced to observe the patients' physical and mental decline. In this survey we included all cases of CJD who were registered in Germany within seven months. Questionnaires were sent to the closest relatives (n = 58). The response rate (n = 42) was acceptable. There was a high prevalenc e of abnormal anxiety and depression scores and bad quality of life. One fo urth (n = 10) took part in a self-help meeting in Gottingen. Six months lat er, a follow-up assessment showed that relatives, who had participated in t he self-help meeting, had significantly (p < 0,05) improved quality of life although their high levels of anxiety and depression persisted. The non-pa rticipants had no changes of depression or quality of life, but slightly im proved anxiety. The severe psychological burden of these relatives could be a reaction to t he physical and mental fall of the CJD-patient. It is higher than that of r elatives of patients with different diseases in the literature. Special sup port for this group of relatives seems necessary.