The emotional well-being of young people having a parent with younger onset dementia

Abstract

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 __________________________________________________________________

Empowerment of young people who have a parent living with dementia: a social model perspective

“…The authors agree with other studies that being connected with support specific to need could potentially prevent or reduce family breakdown, alleviate anxieties and stress, and maintain connections with their social world (Allen et al, 2009;Gelman & Greer, 2011;Hutchinson et al, 2014;Roach, 2010). Without a positive relationship the accumulation of negativity in these young people's lives can have a ripple effect into adulthood if this process is not addressed and social change is not fostered (Gilligan, 2000).…”

“…From this perspective the parent's diagnosis is not the only reason for the young people feeling overwhelmed within the family. The failure of society in recognising individual needs, and supporting accordingly, contributes significantly to disempowering and marginalising individuals (Aldridge & Becker, 1999;Gelman & Greer, 2011;Hutchinson et al, 2014). …”

“…Being informed, knowing their rights and having access to necessary resources about YOD can empower young people's self-advocacy, support their own well-being, and promote inclusion (Hutchinson et al, 2014;Rose & Cohen, 2010).…”

“…Within a more socially orientated model of care, there have been calls for the emotional impact on all the family members to be addressed (Barca et al, 2014;Hutchinson, Roberts, Kurrle, & Daly, 2014). In a model of care focused around a diagnostic label, it is perhaps not surprising that clinicians reported that finding out information about the family members was not valued clinically nor was it regarded as influential in planning (Roach et al, 2012).…”

‘Every time I see him he’s the worst he’s ever been and the best he’ll ever be’: grief and sadness in children and young people who have a parent with dementia

“…1 This is significant as the limited evidence indicates that parental dementia in families with children and young people causes greater social and psychological upset, damage, tension, hardship and family break up than it does when children are adult (Allen, Oyebode, & Allen, 2009;Barca, Thorsen, Engedal, Haugen, & Johannessen, 2014;Denny et al, 2012;Gelman & Rhames, 2016;Harris & Keady, 2009;Hutchinson, Roberts, Kurrle, & Daly, 2014;Johannessen, Engedal, & Thorsen, 2015;Luscombe, Brodaty, & Freeth, 1998;Millenaar et al, 2014;Roach, Keady, Bee, & Williams, 2013;Robertson, 1996;Rosenthal Gelman & Greer, 2011;Svanberg, Stott, & Spector, 2010, 2011.…”