Rinsho Shinkeigaku (Clinical Neurology)

Original Article

Living situation of the at-home patients suffering from amyotrophic lateral sclerosis in Aichi prefecture, Japan

Yuko Ichikawa, M.D.1), Yuka Tsunoda, M.D.1), Tomoko Nishikawa, M.D.1), Akifumi Fujikake, M.D.1), Taka-aki Fukuoka, M.D.1), Keisuke Tokui, M.D.1), Jun-ichi Niwa, M.D.1), Masayuki Izumi, M.D.1), Naoki Nakao, M.D.1)and Manabu Doyu, M.D.1)2)

1)Division of Neurology, Department of Internal Medicine, Aichi Medical University
2)Aichi Prefecture Association for the Treatment of Intractable Diseases

It is essential that we know the real situation of at-home patients with amyotrophic lateral sclerosis (ALS) in order to improve their medical support system. We indirectly investigated the daily living status of ALS patients and their families at home by conducting on individual questionnaires survey for nurses working at public health centers in Aichi prefecture, Japan. Detailed information about 136 cases was obtained, and we could clarify the need for variety of communication methods, plasticity of medical interrelations and care between neurologists and home doctors, incomplete utilization of social resources including various official support, overwork among single caregivers, and underdeveloped immature individual medical care support programs for them. Thus it might be important that we should promote the sure utilization of social resources and programming the individual medical care support in their earlier stages. And moreover, we should also consider constructing a general support system for at-home patients with ALS, in which each professional would owe the dividing responsibility, without role duplications. These strategies would lead to overall the better quality of life among ALS patients, and their families.
Full Text of this Article in Japanese PDF (500K)

(CLINICA NEUROL, 52: 320|328, 2012)
key words: amyotrophic lateral sclerosis, at-home patient, social resources, official support, individual medical care support program

(Received: 31-Oct-11)