Younger onset dementia (YOD) not only affects the person with the diagnosis but the whole family, which often includes young people. A limited body of research on this group of young people indicates that they experience varying degrees of emotional trauma. We explored the lived experiences of young people having a parent with YOD from the perspective of the social model of disability. Data was available from semi-structured interviews with 12 young people who had a parent with YOD looking at their lived experiences between 10 -24 years. Thematic analysis identified four main themes: the emotional toll of caring, keeping the family together, grief and loss and psychological distress. The social model of disability theory provides a helpful framework for these families who experience significant emotional distress, demonstrating that the disability is often socially constructed by a society, which marginalizes and excludes them. A 'whole family' approach is proposed, where the needs of young people and their parents are respected and responded to age appropriately.
KeywordsEmotional trauma, lived experiences, social model of disability, young people, younger onset dementia __________________________________________________________________
The richness of the informal curriculum in a longitudinal rural placement powerfully influenced students' intentions to practise rurally. It provided an important context for learning and evolving notions of professionalism and rural professional identity. This richness could be reinforced by developing formal curricula using educational activities based around service-led and interprofessional learning. To overcome the contextual barriers, the rural workforce development model needs to focus on socialising medical students into rural and remote medicine. More generic issues include student selection, further expansion of structured vocational training pathways that vertically integrate with longitudinal rural placements and the maintenance of rurally focused support throughout postgraduate training.
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