Abstract
BACKGROUND: Dignity is crucial for family members providing care to individuals with dementia, yet its conceptualization may vary based on periods since onset and family relationships. This study employed quantitative text analysis to elucidate family members' concepts of dignity in care, considering both the time elapsed since the dementia diagnosis and the nature of family relationships. METHODS: Concepts of dignity were gathered from 120 Japanese family members through an open-ended question. Morphemes extracted from the responses, along with family relationship attributes and periods after diagnosis, were plotted on dimensions of correspondence analysis. Hypotheses about these concepts were formulated based on the plots and content analysis of the responses. Fisher's exact test was used to compare the frequency of morphemes across different attributes. RESULTS: Three hypotheses of concepts of dignity related to periods after diagnosis and six related to family relationships were established. Significant differences in morpheme frequencies connected with the concepts were observed among attributes such as periods, spouse versus non-spouse, blood relative versus non-blood relative, and sex. For instance, the frequency on 'Do not deny or hurt, and manage symptoms' was more during the short period after the diagnosis than the other periods while the frequencies regarding 'Accept her/him, esteem her/him as an adult or a member of society' was more during the long period than the other periods. While opinions did express challenges in maintaining dignity, these did not show significant variation across attributes. CONCLUSIONS: Different morpheme frequencies of concepts of dignity among the attributes suggest that the conceptualization varies with the periods since the diagnosis and family relationships. Common challenges in practicing dignified care suggest that all family members experience conflicts between ideals and reality. It is essential for professionals to recognise these differing ideals and shared conflicts. Further cross-cultural comparisons of these findings are needed.