The experience of caring for a partner with young onset dementia: how younger carers cope

Abstract

A growing body of literature suggests that the social context of experiencing dementia at a younger age may influence carers' and particularly partners' subjective experience and coping strategies. The current paper aims to explore the coping strategies adopted by six carers in order to adapt to changes in their relationship with their partner with young onset dementia. All were recruited from the north west of England and interpretative phenomenological analysis was used to analyse the data. Four major themes were evident: (1) 'this is not happening': the use of denial as a coping strategy; (2) 'let's not have anymore of this demeaning [treatment]': stigma in young onset dementia; (3) 'I've had to fight every inch': struggling to maintain control of events and emotions; (4) 'what will become of me?': carers' adaptation to loss. Comparisons with existing literature are made and implications for clinical practice are considered.

Keywords: carers; coping; interpretative phenomenological analysis; qualitative research and young onset dementia.