Shifting uncertainties in the pre-diagnostic trajectory of early-onset dementia

This article argues that people with early-onset dementia and their family members experience shifts when it comes to dealing with uncertainty in the pre-diagnostic illness trajectory. The empirical data show that these shifts follow three patterns. Upon the appearance of first symptoms, people with early-onset dementia and their family members, in a collaborative effort, maintain uncertainty in order to continue living the lives they know. Following this, various explanations, all with a temporal character, are sought to explain changed behaviour. Finally, when relationships are threatened or health is perceived to be at stake, people seriously start to seek medical advice. This article is based on 41 qualitative interviews with seven people with early-onset dementia and 39 family members in the Netherlands, conducted between 2014 and 2015. Interviews were transcribed, coded and analysed identifying key topics.