Assessment scale for caregiver experience with dementia. Development of an instrument in Japan

A great deal of research has been conducted concerning the burden on care-givers of elderly patients with dementia, but only a small number of qualitative studies discuss actual ways individuals with dementia are being cared for and describe the caregiving experience. Scales for assessing caregiver experience have not yet been developed. The aim of this study was to develop an instrument on the basis of the caregiver experience model developed by Kobayashi [Suwa], Masaki, and Noguchi (1993) in Japan. Psychometric evaluations of the scale were conducted. A sample of 116 caregivers were asked to fill out a questionnaire on a self-rating 5-point scale measuring their sense of caregiving burden, and 90 responses were obtained. The data measured with this original scale was subjected to factor analysis and an assessment scale was developed. As a result, the Assessment Scale for Caregiver Experience with Dementia (ASCED) was created. It consists of 24 items, divided into three subscales--the empathetic caregiving experience, the disciplinary caregiving experience, and the resigned caregiving experience. It also divides caregivers into six types. Work needs to be performed not only to further evaluate changes in the caregiving experience through refinement of the ASCED, but also to qualitatively and quantitatively investigate the nature of the care given to elderly individuals with dementia.