title: Living with uncertainty: Mapping the transition from pre-diagnosis to a diagnosis of dementia.
abstract: 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.
authors.affiliation: Dementia and Ageing Research Team, School of Nursing, Midwifery and Social Work, The University of Manchester, UK.
authors.forename: Sarah
authors.initials: S
authors.lastname: Campbell
authors.affiliation: Social Care Workforce Research Unit, King's College London, UK.
authors.forename: Jill
authors.initials: J
authors.lastname: Manthorpe
authors.affiliation: Social Care Workforce Research Unit, King's College London, UK.
authors.forename: Kritika
authors.initials: K
authors.lastname: Samsi
authors.affiliation: Institute for Ageing, Newcastle University, UK.
authors.forename: Clare
authors.initials: C
authors.lastname: Abley
authors.affiliation: Institute for Ageing, Newcastle University, UK.
authors.forename: Louise
authors.initials: L
authors.lastname: Robinson
authors.affiliation: Greater Manchester West Mental Health NHS Foundation Trust, UK.
authors.forename: Sue
authors.initials: S
authors.lastname: Watts
authors.affiliation: Newcastle University, UK.
authors.forename: John
authors.initials: J
authors.lastname: Bond
authors.affiliation: Dementia and Ageing Research Team, School of Nursing, Midwifery and Social Work, The University of Manchester, UK.
authors.forename: John
authors.initials: J
authors.lastname: Keady
mesh_terms: D000368:Aged; D003704:Dementia / Q000175:diagnosis / Q000523:psychology*; D042241:Early Diagnosis; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D012649:Self Concept; D012944:Social Support; D035501:Uncertainty; D006113:United Kingdom