Caring for an intimate partner with dementia requires enormous resilience - alongside enormous grief. Drawing on the methodology of auto-ethnography, we provide insights into the intimate partner care experience, revealing why the carer's grief is both intense and long-lasting. Dementia impacts on ways people mutually connect. There is no greater impact than on the connection between intimate partners. Changes in physical, emotional and sexual intimacy are significant. Carers may experience lack of reciprocity and immense loneliness. Dementia involves a changing of self for the person with dementia and a reduction in capacity for meaningful expression.
An intimate partner carer must learn to communicate appropriately and effectively with their changing partner. A skilled carer may be able to hold their partner in their identity within a valued relationship. But what is happening to the carer's own self? They must change and continually adjust to this new and different relationship - with inevitable grief. Grieving for a changing partner involves grieving for the loss of one's own self - a complex grief. It involves the self and other of a pre-dementia relationship; the changes as dementia progresses; and, when their partner dies, the loss of that relationship and of the new carer-self.