Journey to Diagnosis of Young-Onset Dementia: A Qualitative Study of People with Young-Onset Dementia and their Family Caregivers in Australia

Objectives This study aims to explore the journey to dementia diagnosis and reaction to the diagnosis from the perspective of people with young-onset dementia living in the community from diverse areas in Australia (metropolitan, regional, rural) and their family caregivers. Methods Semi-structured interviews were conducted with community-dwelling people with early to moderate young-onset Alzheimer’s disease ( n = 8) or frontotemporal dementia ( n = 5) and one person with both Alzheimer’s disease and frontotemporal dementia, and family caregivers of community-dwelling people with young-onset Alzheimer’s disease and/or frontotemporal dementia ( n = 28). This study employed interpretive description. Thematic analysis was conducted for emergent themes, comparisons and interplay between themes. Findings The journey to the diagnosis is characterised as involving an extensive period of the gradual worsening of symptoms, drawn out investigations, and difficulties facing the prospect of a diagnosis of young-onset dementia. Participants with young-onset dementia struggled to manage their symptoms and the process of seeking a diagnosis was often slow due to difficulties during the course of their medical investigations and feeling reluctance to face the possibility of having dementia. Once participants finally received the diagnosis of young-onset dementia, participants with young-onset dementia and their family caregivers experienced feelings of devastation and shock, in some cases denial and avoidance, and even, confirmation and relief at having received a diagnosis. In some instances, participants experienced more than one of these reactions. There was a profound realisation by participants that a diagnosis of young-onset dementia had serious implications on their life and future. Conclusion The journey to diagnosis was found to be a drawn-out process and receiving the diagnosis was a shock for both people with young-onset dementia and their family caregivers. The findings highlight the significance of the role healthcare professionals play in both the diagnostic and post-diagnostic journey, particularly in terms of supporting patients with young-onset dementia and their family caregivers.