Cross-sectional survey of the replacement of the Japanese term for dementia: Did it reduce discomfort in family members?

Objectives: Decreasing discrimination and stigma of dementia is an international issue. In 2004, the Japanese government changed the previous Japanese stigmatic term of dementia ("Chiho") to the present one ("Ninchi-sho") a meaning near "neurocognitive disorder." This study aimed to examine cross-sectionally if the present term functioned well or not from the viewpoint of families of people with dementia (PWD), and to discover variables influencing their feelings of the term: the feelings about people surrounding PWD, and the family members' and PWD's attributes.

Methods: Questions regarding the feelings about the present Japanese term and people surrounding PWD were asked to 155 family members accompanying PWD who visited three hospitals. For analyses, the degree of the discomfort about the present Japanese term was shown descriptively. The relationship of constructs of the feelings extracted by exploratory factor analysis (EFA) and the attributes was analyzed using structural equation modeling (SEM).

Results: 71.6% agreed that the present term discomforted them less than the previous one. Only 13.2% thought that the present term was discriminatory. However, about one third of the participants felt discomfort when they used even the present term. Using the constructs extracted by EFA, the analysis of SEM revealed that the negative feelings of the terminology were affected by hesitation to disclose to surrounding people that their family member had dementia, which the attributes of younger family members, wives, husbands, and siblings influenced. Moreover, because of disclosing the dementia, the feelings of support from people alleviated the feelings of hesitation, influenced by sex (female).

Conclusions: It was suggested that overall, the present term successfully reduced discomfort in families, compared with the result of the previous term surveyed by the Ministry of Health, Labour, and Welfare. However, unignorable numbers of family members still feel stigma. New policies are necessary considering the influencing factors.