From “What the Hell Is Going on?” to the “Mushy Middle Ground” to “Getting Used to a New Normal”

Hall, M and Sikes, P (2016) From “What the Hell Is Going on?” to the “Mushy Middle Ground” to “Getting Used to a New Normal”. Illness, Crisis and Loss, 26 (2). pp. 124-144. ISSN 1054-1373

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Abstract

The number of young people who have a parent with dementia is rising as a result of improvements in diagnosis of young onset variants and demographic shifts. There has, however, been very little research focusing on this group. Accounts elicited as part of the Perceptions and Experiences of Young People With a Parent With Dementia described the period, usually some years, leading up to a diagnosis of a dementia and then the progress of the condition post diagnosis. These narratives were characterized by confusion, uncertainty, trauma, and distress as the young people struggled to make sense of the significant and often extreme, behavioral and attitudinal changes that were symptoms of the illness. This article describes and discusses how the young people experienced and navigated the temporal messiness and consequent biographical disruption arising from parental dementia.