title: Empowerment of young people who have a parent living with dementia: a social model perspective.
abstract: BACKGROUND
  Socially constructed disablement has marginalized young people in families where a parent has younger onset dementia (YOD). This has contributed to inadequate societal support for their complex situation. Impacts on such young people include significant involvement with mental health services for themselves. In this paper, we explored the young people's lived experiences in these families and the influencing factors to enable these young people to be included and supported within their community.
  
  
  METHODS
  In this qualitative research study, the social model of disability was used as the theoretical framework in conducting a thematic analysis of interviews with 12 participants.
  
  
  RESULTS
  Three themes emerged; invisibility highlighting the issues of marginalization; connectivity foregrounding the engagement of young people with family, friends and their social networks, and being empowered through claiming their basic human right to receive the age appropriate support they needed.
  
  
  CONCLUSIONS
  The current plight of young people living with a parent with YOD demands a fundamental shift by society in developing inclusive cross-sectorial cooperation linking service providers across youth and dementia sectors. This requires working in partnership with the service users responding to the identified needs of individual family members.
authors.affiliation: NHMRC Cognitive Decline Partnership Centre,Old Leighton Lodge (Building 8),Hornsby Ku-ring-gai Hospital,Hornsby NSW 2077,Australia.
authors.forename: Karen
authors.initials: K
authors.lastname: Hutchinson
authors.affiliation: Northern Clinical School-Hornsby,Building 3,Hornsby Ku-ring-gai Hospital,Hornsby NSW 2077,Australia.
authors.forename: Chris
authors.identifier: http://orcid.org/0000-0001-8613-682X
authors.initials: C
authors.lastname: Roberts
authors.affiliation: Northern Clinical School-Hornsby,Building 3,Hornsby Ku-ring-gai Hospital,Hornsby NSW 2077,Australia.
authors.forename: Michele
authors.identifier: http://orcid.org/0000-0002-1647-1099
authors.initials: M
authors.lastname: Daly
authors.affiliation: The University of Notre Dame Australia,19 Mouat Street (PO Box 1225),Fremantle,Western Australia 6959,Australia.
authors.forename: Caroline
authors.identifier: http://orcid.org/0000-0003-4482-563X
authors.initials: C
authors.lastname: Bulsara
authors.affiliation: NHMRC Cognitive Decline Partnership Centre,Old Leighton Lodge (Building 8),Hornsby Ku-ring-gai Hospital,Hornsby NSW 2077,Australia.
authors.forename: Susan
authors.identifier: http://orcid.org/0000-0003-3448-4181
authors.initials: S
authors.lastname: Kurrle
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000368:Aged; D016241:Child of Impaired Parents / Q000523:psychology*; D003704:Dementia; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008962:Models, Theoretical; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D011209:Power, Psychological; D036301:Qualitative Research; D062487:Social Marginalization / Q000523:psychology*
keywords: collaboration; lived experiences; marginalization; parents with younger onset dementia; social model of disability; young people