Exploring the Experience of Living with Young Onset Dementia

Introduction: Research into the experiences of those with a diagnosis of young onset dementia is extremely limited and the research that does exist tends to be loss orientated. The current study aimed to explore the full spectrum of lived experience of those with young onset dementia, whilst considering the unique impact of diagnosis at a younger age and the possibility of personal growth.
Method: Five individuals took part in semi-structured interviews within which they were invited to bring along anything that helped them to share their experiences. Each participants’ transcribed interviews were then analysed using Interpretative Phenomenological Analysis (IPA). A group level analysis was conducted and superordinate and subordinate themes were identified.
Results: Four superordinate themes emerged: ‘Fear’, ‘Anger’, ‘Sadness’, ‘Contentment’ from which a further thirteen subordinate themes were identified. The findings indicated that participants experienced feelings of fear and vulnerability in response to their diagnosis. Participants felt angry that they did not have a voice, not enough was being done for those with dementia and they were being stereotyped. Participants also spoke of a more depressive state of mind in which they grieved for their past self, experienced isolation and loneliness, and feelings of hopelessness and despair. Finally, participants spoke of a sense of contentment in relation to a preserved self, a sense of living alongside their dementia and an desire to live in the present; making the most of the here and now.
Discussion: The findings of the study were explored in relation to existing literature and psychological theory. This research highlighted the transitory nature of participants experiences as a result of multiple and repeated challenges to one’s psychological equanimity. A critical appraisal of the strengths and limitations of this study were explored along with clinical implications. Future areas of research were also considered.