Objective: This study was carried out to elucidate factors related to difficulty in continuing home health care and to investigate problems of the corresponding support system for patients with intractable neurological diseases.
Subjects and methods: Subjects were 139 cases of amyotrophic lateral sclerosis (ALS), 376 cases of spino-cerebellar degeneration (SCD) and 1,048 cases of Parkinson's disease (PD) who were collected from the nationwide survey of health and social service needs of the patients with intractable diseases in 1995. Factors and problems related to limited activity due to diseases and necessity for medical care were analysed. The need for facilities of long-term care was also studied.
Results: The characteristic conditions of patients with ALS were shorter duration of the illness, higher percentage of conditions requiring medical care and disorders of swallowing or respiration and full nursing care in daily life compared with the other two diseases. The characteristics of PD were higher percentage of female and older age in both patients and their family caregivers. The proportion of cases for whom health care was judged to be prone to difficulty was 23.0% in ALS, 10.9% in PD and 7.2% in SCD, respectively. Regarding the factors related to difficulty in continuing home health care, conditions requiring medical care, the need for full nursing care in daily life, and the duration of the illness were recognized in ALS. In SCD, 5 factors, including conditions requiring medical care, the need for full nursing care in daily life, patients age greater than 65 years, the duration of the illness, and patients being nursed by their sons or daughters were detected. In PD, 4 factors, such as conditions requiring medical care, the need for full nursing care in daily life, the patients being nursed by persons other than the spouse, and the need of nursing care were found.
Conclusion: These results suggest the necessity of social functions of medical care, nursing and family support that can be supplied at home effectively according to symptoms in progress, and the need for facilities of long-term care of patients for whom continuation of home health care may become difficult, which will work as a support system for long-term care of patients with intractable neurological diseases.