The impact of dementia on the dyadic relationship from the perspective of the person with dementia

Abstract

Dementia imposes a profound burden on spousal relationships, altering communication, relationship dynamics, intimacy and emotional connectedness. This study, which was an empirical qualitative study that was part of a PhD research, explored these changes using Framework Analysis as a data analytical method. Data was based on interviews conducted separately with persons with dementia and then their caregiving spouses, with 9 dyads recruited for this study. Findings revealed variance in awareness from the person with dementia, where some were more aware of more overt changes, whilst others were more aware of more subtle changes. The study however, revealed that there were multiple categories where individuals with dementia remained unaware of relationship shifts (such as in friction, communication and dependency). This lack of awareness appears to stem from potential anosognosia, ego preservation, or, most notably, the withholding of information by the caregiving spouse. These insights highlight the need for targeted support to address the hidden emotional and psychological challenges these dyads face to improve their relationship quality and wellbeing.