Understanding and Prioritizing Needs of People With Young-Onset Dementia and Family Carers Across the Disease Trajectory: A Qualitative Study and Conceptual Framework

People with young-onset dementia and their family carers have unique needs, as a dementia diagnosis at a younger age profoundly impacts work, family life, and social roles. Understanding these needs is essential to develop tailored psychosocial support. This study aimed at creating a conceptual framework of needs related to young-onset dementia by exploring and prioritizing needs across different phases: before diagnosis, shortly after diagnosis, and long term. Focus groups were conducted with persons living with young-onset dementia and their family carers. Inductive qualitative analysis informed a conceptual framework, while descriptive, aggregated scores of 'prioritization cards' identified the urgency of needs. Before diagnosis, the most urgent need for the persons themselves and family carers was clarity, particularly regarding the diagnostic process and access to a clear care pathway. Shortly after diagnosis, key needs included coping with the diagnosis, navigating post-diagnostic support, and planning for the future, with family carers prioritizing a timely and tailored point of contact and persons living with young-onset dementia seeking clarity about disease progression. In the long term, needs focused on balancing care and autonomy within the dyad, sustaining life at home, managing transitions to residential care, and finding a meaningful way to spend the day. Family carers emphasized administrative support and persons themselves mostly valued positivity. The needs and priorities of persons living with young-onset dementia and their family carers evolve across the disease trajectory, with shifting and interdependent needs. Differences in perspectives highlight the necessity of dyadic and family-centered approaches. These insights can guide the development of tailored psychosocial interventions that address timely, phase-specific needs and support both the person living with young-onset dementia and their family.