“It was a terrible, terrible journey”: an instrumental case study of a spouse’s experience of living with a partner diagnosed with semantic variant primary progressive aphasia

Abstract

Background: Semantic variant primary progressive aphasia (svPPA) is an uncommon neurodegenerative condition that causes prominent changes in communication skills, personality and behaviour. Insidious deterioration in conceptual–semantic memory abilities is the hallmark feature underpinning these impairments from the early-to-middle phases. Very little research has explored how svPPA is experienced by spouses/partners, particularly how they “make sense” of the presenting difficulties, deal with everyday issues and manage the changing psychosocial aspects of their intimate relationship. Aims: This instrumental case study explored the experience of a spouse who supported her husband with svPPA ..