The emotional well-being of young people having a parent with younger onset dementia.
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.
Cognitive Decline Partnership Centre, University of Sydney, Australia karen.hutchinson@sydney.edu.au.
Karen
K
Hutchinson
Northern Clinical School - Hornsby, University of Sydney, Australia.
Chris
C
Roberts
Cognitive Decline Partnership Centre, University of Sydney, Australia; Hornsby Ku-ring-gai Hospital, Australia.
Susan
S
Kurrle
Northern Clinical School - Hornsby, University of Sydney, Australia.
Michele
M
Daly
D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002648:Child; D003704:Dementia / Q000523:psychology*; D004644:Emotions; D005260:Female; D006801:Humans; D008297:Male; D008962:Models, Theoretical; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D012944:Social Support; D013315:Stress, Psychological; D055815:Young Adult
emotional trauma; lived experiences; social model of disability; young people; younger onset dementia