Analysis of breakdown in family care for patients with dementia
Asada, T.
Seishin Shinkeigaku Zasshi 93(6): 403-433
1991
ISSN/ISBN: 0033-2658 PMID: 1891501 Document Number: 369617
Although it has been stressed that patients with dementia should be cared for at home, family care seems to break down sooner or later. On the other hand, the number of demented patients is now increasing at a far greater rate than can be handled by institutions for the elderly. For these reasons, the appropriate use of social resources is now being emphasized. As early as 1960, Macmillan pointed out that the emotional relationship between an elderly patient and the relative responsible for him determines whether family care will breakdown, and stressed the importance of troublesome behavior in this relationship. Since then, researchers have studied the problem of troublesome behavior in demented patients and the burden that this creates for relatives nursing them. Such studies have stressed that the support of caring relatives is indispensable for the community care of demented patients. In the present study an attempt was made to analyze in detail the breakdown of family care for demented patients. To facilitate systematic study, we compiled a pair of check lists containing criteria of troublesome behavior and care burden, adapted from the Disability and Handicap criteria of the WHO. For the purpose of the study, we regarded troublesome behavior as Disability, and car burden as Handicap. The subjects were 40 demented patients and their respective main carers, who had requested institutional care. Before ther breakdown, the author had been in charge of all of the patients. The mean period of patient observation was 12 months. At the point when the decision of institutionalization was made by family members, visits were made to each patient-carer pair, and the check lists were used to assess troublesome behavior and care burden. In order to clarify the features of the subject group, the author also visited and examined another 30 patient-carer pairs, who still lived in their home communities, between June and September, 1990. The mean period of observation for these patients was 18 months. There were no significant differences in sex, diagnosis, duration of illness, cognitive function, or number of physical complications between the two groups. No significant difference was found in the total score for the behavior check list between the two groups. In contrast, however, there was a significantly higher score for the burden check list representing those caring for the patients in the study group. Furthermore, it was revealed that social activity, individual free time and familial interaction, as well as many emotional and physical aspects, were more severely affected in the subject carers. This results appeared to confirm that the care burden itself, rather than troublesome behavior is responsible for breakdowns. In all of the 70 pairs analyzed, a significant correlation was found between the total score for the behavior check list and that for the burden check list. The result of this study highlighted several new emerging problems. One serious problem is that of patients driving by themselves. In addition many of carers reported recurrent falls by the patients. As to the problems faced by carers themselves, an appreciable number had been forced to give up their jobs to devote themselves to patient care. In general, female carers with husbands younger than 65 years reported economic distress. Additionally, unlike the situation in most western reports, as many as 43% of the main carers in this study were daughters in law. These problems faced by carers seem to be common in Japan, and are perhaps characteristic of Japanese society. Finally, from the aspect of breakdown prevention, the author has examined both formal and private supporting systems for carers. To improve the situation, it may be useful to promote a self-help system for individuals nursing demented relatives.