The perceptions and experiences of children and young people who have a parent with young onset dementia

Author(s):  
Pat Sikes ◽  
Melanie Hall
2019 ◽  
Vol 68 (1) ◽  
pp. 242-259
Author(s):  
Melanie Hall ◽  
Pat Sikes

Drawing on narrative interviews from a study exploring the perceptions and experiences of children and young people who have a parent with young onset dementia, this article explores the ways in which the condition impacted their life courses. Dementia is degenerative, terminal and has an unpredictable timeframe that affected young people’s time perspectives, life planning and the ways they conceptualized their lives. This article contributes to the literature around young people’s life courses by illustrating how the concept of liminality can inform understandings of the impact of parental illness on the life course. Using a constructionist perspective we explore the impact of parental dementia on life planning in relation to education/career, mobilities and personal lives. For some, the future was a source of deep anxiety, whilst others were preoccupied with the present and unable to contemplate life beyond their parents’ illness. On the whole, participants felt their lives were in ‘limbo’ until their parents’ death. The data indicate that nuanced approaches towards the life course are required in order to better understand ‘being in limbo’ and to inform support.


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