Understanding the dementia diagnosis: The impact on the caregiving experience

OBJECTIVES: There is a paucity of research surrounding disclosure from the perspective of caring partners, therefore this research explores how caring partners understand and make sense of diagnostic information. METHOD: Semi-structured interviews were conducted with 10 spouses of people with dementia. Interviews aimed to elicit participants' understanding of dementia and the way that information was used to make sense of dementia. Interviewee accounts were analysed using interpretative phenomenological analysis. RESULTS: Four main themes emerged: lack of information; personal understanding and implications for adjustment; societal understanding and persistent stigma; and lack of partnership working. CONCLUSIONS: The analysis indicated a lack of information and continued support following a diagnosis. In the absence of information and support, caring partners described difficulty understanding and adjusting to behavioural, physical and psychological changes in their partner. A greater understanding of the condition was beneficial in terms of adjustment and emotional responses to a partner.