The experience of being a spouse of a person with dementia in respect to their marital relationship in Japan

Abstract

While the marital relationship with partners with dementia has an impact on spousal carers' well-being, the spousal understandings or expectations of their marital relationship have not been fully identified. As the marital relationship is formed by individual backgrounds including society, culture and psychological status, the aim of this study was to identify the experience of being the spouse of a person with dementia in the context of their marital relationship. The study was conducted in Japan. To identify spousal experience of being, Heideggerian perspectives of interpretive phenomenology were applied. Seven couples aged over 65 years, each comprising one partner with dementia who received home nursing, and their spouse participated in this study. The couples were observed, and semi-structured interviews were conducted. Interpretive data analysis based on the Hermeneutic circle of Heideggerian perspectives was applied. In the findings, the experience of being a spouse, contextualised by spousal understandings of marital relationship, was formed through seven themes. The main context for spousal understanding of their marital relationship was helping each other as husband and wife, and this relationship was seen as natural and unchanging. It reflected on spousal potentiality of being, that is, living together indefinitely as before. Spouses tried to provide suitable care for their partners using memories while preserving a sense of identity, maintaining external relationships and accepting unanticipated internal responsibility. In conclusion, fulfilling unmet needs could help spouses to ease intense care load, which re-acknowledges their own and their partner's identity, and their relationship by reminiscing their past.