Living with uncertainty: Mapping the transition from pre-diagnosis to a diagnosis of dementia

• Early diagnosis of dementia is a policy and practice imperative, nationally and internationally.
• Memory clinics are becoming the locations for imparting a diagnosis of dementia in the UK.
• Illness representations of dementia indicate a threat to personal identity.
• Uncertainty underscores the journey through dementia.
• The development of a more integrated approach to psychosocial support around diagnosis may be needed.

Across the world, an early and timely diagnosis of dementia is seen to be a policy and practice imperative and a necessary step in order to live well with the condition. However, limited understanding exists regarding the personal and relational meanings attributed to the diagnostic experience. Drawn from the findings of a larger multi-site study conducted in four areas of England, this article presents a subset of the data where five participants and their carers and two people living alone initially presented themselves at a memory clinic for diagnostic testing, with this presentation eventually resulting in a confirmed, and shared, diagnosis of dementia. All 12 participants were interviewed at two time points in the study: at the time of first presentation to the memory clinic and shortly after the diagnosis had been shared with them. Informed by the grounded theory method, constant comparative analysis was applied to the data and this process resulted in a four-phase sequential model of diagnostic transition: (1) becoming self-aware → seeking outside help; (2) being referred → receiving a clinic appointment; (3) undergoing tests → being told what's wrong; and (4) adjusting to the diagnosis → negotiating everyday expectations. Running through each phase was the core category of ‘living with uncertainty’ which summarised the entire diagnostic journey for all study participants. Findings suggest a need for better awareness and information for people living with dementia at all phases and time points in the condition, which may be fostered by embedding these in early clinical encounters.