[Problems inherent to the care of patients with ALS]

A questionnaire survey was conducted in September 2000 to clarify the actual state and problems inherent to the care of patients with amyotrophic lateral sclerosis (ALS). The subjects were members of a patients' association, and 176 members answered the questionnaire (response rate. 64.9%). Patients being taken care of at home accounted for 76.7% of those who answered the questionnaire and those under mechanical ventilation (MV) at home for 40.3% of respondents. Compared with the results of the same survey administered by the patients' association in 1992 and 1996, the figures showed an increase of the patients being taken care of at home. Of the subjects who were receiving domiciliary services under the long-term care insurance system introduced in April 2000, those who considered the services had improved under the new system accounted for 44.2% of the respondents, and those who thought the services had worsened for 25.0%. The latter percentage included a greater number of patients under MV or who were using an aspirator and those with overworked caregivers. Moreover, the burden for the caregiver did not necessarily decrease when the patient was admitted to hospital, because attendance by the caregiver or additional costs for services were required. The new insurance system is thus considered to be inadequate and unsatisfactory for seriously disabled people, such as patients with ALS.