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A Mixed Methods Interpretative Phenomenological Analysis of the Experience of Posttraumatic Growth in Young Onset Dementia

Noakes, Sarah (2021). A Mixed Methods Interpretative Phenomenological Analysis of the Experience of Posttraumatic Growth in Young Onset Dementia. (Unpublished Doctoral thesis, City, University of London)


Background: The diagnosis of a life-limiting illness is now known to be able to elicit posttraumatic stress disorder (PTSD) (American Psychiatric Association, 2013). Traditionally research investigating life-limiting illnesses has focused on negative psychological implications. In recent years there has been a push to research the experience of positive psychosocial outcomes. This phenomenon known as posttraumatic growth (PTG) has been studied within clinical populations including cancer and HIV. Yet there have been no attempts to extend the model of PTSD-PTG to dementia; a progressively debilitating condition, affecting cognition, with no cure and very few effective treatments. This research explores the experiences of distress and PTG in those diagnosed with dementia before the age of 65.

Method: A sequential explanatory mixed methods design. Phase One observed 37participants completing a battery of questionnaires including the Impact Event Scale-Revised (IESR), the Posttraumatic Growth Inventory (PTGI), Self-compassion scale short-form (SCS-SF) and the Connor-Davidson Resilience scale (CD-RISC), assessing for presence of PTSD and PTG. In Phase Two Interpretative Phenomenological Analysis (IPA) was employed as the methodological framework for the analysis of interviews with five young people with dementia.

Results: 22 participants met the criteria for a probable diagnosis of PTSD, 10 participants achieved scores that indicated clinically concerning PTSD symptoms in accordance with current DSM-5 criteria. Participants scores on the PTGI were indicative of low to moderate degrees of PTG. Participants scored highest in the domains of new possibilities, appreciation of life and personal strength. Phase two yielded three superordinate themes: ‘Learning to live with dementia’, ‘More to life than the ‘Big D’’ and ‘Life is a lottery’.

Conclusion: A dementia diagnosis at a younger age was seen to be associated with symptoms consistent with PTSD. Young people with dementia can experience varying degrees of PTG, which enhance quality of life and life satisfaction. This study provides the foundations for future exploration into the lived experiences of YPwD and the development of appropriate and sensitive clinical interventions.

Publication Type: Thesis (Doctoral)
Subjects: B Philosophy. Psychology. Religion > BF Psychology
Departments: Doctoral Theses
School of Health & Psychological Sciences > Psychology
School of Health & Psychological Sciences > School of Health & Psychological Sciences Doctoral Theses
[thumbnail of Noakes Thesis 2022 Redacted.pdf]
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