Jornal Internacional de Neurorreabilitação

Educational Programs for Neurodegenerative Diseases

Abstract

Takeshi Oki

As we cannot stop disease progression of neurodegenerative diseases, we have to consider neurodegenerative diseases as life-threatening illnesses and the objects of palliative care. Neurodegenerative disease patients and their families usually did not have much information about their diseases and often could not choose their treatment and care options on their own. Before applying the principles of palliative care to the patients and their families, we had to give appropriate information about their disease to them. But there were few educational interventions for neurodegenerative disease patients and their families and also few studies investigating the knowledge of them. Moreover all but one was the educational interventions for demented patients. All reports about the educational interventions for neurodegenerative diseases showed that the simple educational interventions might not reduce the burdens on the families, and moreover one report for extrapyramidal diseases and cerebellar degenerations showed that the simple educational interventions could not change the course of natural degradation of the diseases and might produce depressive reaction to the patients. In order to reduce the burdens of the families we have to support the families with physically, and in order to encourage the patients to accept their disease we have to control their depression and approach to them with the principles of palliative care.