Trauma and dementia diagnosis: An investigation of the potential for a trauma-informed pathway through the diagnosis of dementia, for people under 65 years old

Young Onset Dementia (YOD) refers to dementia diagnosed in people under the ageof 65. Unlike dementia in older adults, YOD often affects people who are still working,raising families, and managing active relationships. Receiving a diagnosis can be along and stressful process, which increases the risk of psychological distress andtrauma for both individuals and their families.Currently, there is limited understanding of how trauma-informed care, an approachthat recognises and responds to the impact of trauma, can be used to support peoplewith YOD and their carers throughout the diagnostic journey. Health professionals mayfind it difficult to identify trauma or its effects, which can lead to unmet needs beforeand after diagnosis.This study aimed to explore the experiences of individuals with YOD, their families,and the healthcare professionals involved in their diagnosis. Using interviews with nineparticipants (three people with YOD, three carers/family members, and three healthprofessionals), the five trauma-informed principles: safety, choice, trustworthiness,collaboration and empowerment were used to explore how they could improve thediagnostic pathway.Participants were recruited through established networks, and interviews wereconducted in Lanarkshire between September 2024 and February 2025. Data wereanalysed to identify how trauma-informed principles could be integrated into practice.Findings showed that if a sense of safety is not established before diagnosis, itbecomes difficult to meet the other trauma-informed principles later. This canundermine support after diagnosis and leave ongoing needs unmet.This research highlights the importance of embedding trauma-informed care early inthe YOD diagnostic process. By doing so, health professionals can better supportindividuals and families, reduce distress, and improve overall experiences throughoutthe dementia journey.