[Disability in everyday tasks and subjective status of patients with advanced amyotrophic lateral sclerosis].

Out of 49 former inpatients diagnosed as suffering from myatrophic lateral sclerosis, 21 with a median illness duration of 33 months and severe physical handicaps took part in follow-up examinations as outpatients (n = 8) or have been visited at home (n = 9) or in nursing institutions (n = 4) another 21 patients had already died from the disease). Investigations included medical history (course of illness), neurological and psychiatric examination and interviews with relatives. Measures of daily living handicaps, quality of medical care, density of social network and amount of social support were obtained. In 16 cases, patients and relatives have been able to answer rating scales concerning patient's physical complaints, present mood, depression and anxiety. According to independent, but corresponding judgements of patients (selfrating), relatives and investigators, three out of four patients suffered from moderate or severe reactive depression. The severity of mood disturbance depended on the degree of physical disability in basic daily functions, rated as "loss of autonomy", and on measures of social isolation (number of relatives available). Handicapped and lonely patients seemed unable to cope with their fate, even if regular care was provided. According to former reports, ALS patients have a reputation of heroic stoicism with a low frequency of depression. Our own findings, obtained in patients with advanced disease, do not support these observations. The medical care--e.g. prescription of specific medication, nursing care, physiotherapy, supply of auxiliary devices and aids, nutrition--could often be considerably improved. Special emphasis is given to the indication and appropriate timing for a gastric feeding tube resp. a percutaneous endoscopic gastrostomy (PEG). A second focus of the discussion is the urgent need for communication devices for paralysed speechless patients.