Qualitative Perspectives of Young-Onset Dementia Care in Australia: A Thematic Analysis From the Joint Solutions Project.

Abstract

People with young-onset dementia in Australia face significant challenges due to inconsistencies in diagnostic and post-diagnostic care. These challenges stem from a general lack of knowledge of young-onset dementia, limited age-appropriate supports, and inconsistent services that are available for people with young-onset dementia. The lack of awareness, insufficient professional training, and inadequacies in services exacerbate these challenges, and geographic disparities exist. In 2024, the Joint Solutions Young-onset Dementia project aimed to explore the care experiences of people with young-onset dementia in Australia, highlighting gaps, barriers, and positive aspects of the care pathway This paper presents the emergent themes derived from the Joint Solutions project. Using qualitative methodology, we gathered optional free-text data from a pool of 313 survey participants and feedback from 47 focus group participants, including individuals with young-onset dementia, caregivers, general practitioners, and community service providers. A thematic analysis generated six key recurring themes and patterns underscoring the needs of this population. These themes highlight the necessity to (1) increase knowledge, information, and education relating to young-onset dementia; (2) improve services to manage the psychosocial implications associated with young-onset dementia; (3) ensure sufficient requisites are in place to provide necessary support and preparedness; (4) enhance the accessibility and availability of age-relevant services; (5) consider the impact young-onset dementia has on personal finances; (6) reduce bureaucracy to obtaining support. These findings emphasise the urgent need for a nationally consistent care pathway to address young-onset diagnostic and post-diagnostic care. A comprehensive framework must be developed, offering a diverse range of resources and services tailored to meet the unique needs of individuals diagnosed with young-onset dementia and their families.