The emotional wellbeing of young people having a parent with younger onset dementia

Karen Hutchinson, Chris Roberts, Susan Kurrle, Michele Daly

Research output: Contribution to journalArticlepeer-review

46 Citations (Scopus)


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 were available from semi-structured interviews with 12 young people who had a parent with YOD looking at their lived experiences between 8 and 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.
Original languageEnglish
Pages (from-to)609 - 628
Number of pages20
Issue number4
Publication statusPublished - 2016
Externally publishedYes


  • emotional trauma
  • lived experiences
  • social model of disability
  • young people
  • younger onset dementia


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