title: Nobody asked me how I felt: experiences of adult children of persons with young-onset dementia.
abstract: BACKGROUND
  There are few studies of young persons (<65 years old) with dementia, and the situation of their children has been a neglected research field. The aim is explore how adult children of a parent with young-onset dementia have experienced the development of their parents' dementia and what needs they have for assistance.
  
  
  METHODS
  Qualitative interviews with 14 informants (aged 20-37 years; 12 daughters, 2 sons) during 2011 were conducted and analyzed thematically.
  
  
  RESULTS
  The informants experienced great burdens and felt neglected during the development of their parents' dementia, both by their family and by health and social services. They emphasized a need to be seen as individuals, with their experiences, feelings, and personal needs for assistance. The stresses experienced during the development of parental dementia seemed to increase conflicts in the family. There were variations in reactions between children, depending on age, gender, family structure and relationships, responsibilities, personal relations with both parents, and whether there was an adult primary caregiver. The length of time living together with the parent with dementia seemed to increase the stress and burden to the children. They expressed a great need for information and support.
  
  
  CONCLUSIONS
  The findings strengthen the notion of the need for family-oriented support, combined with person-centered care for the children according to their needs. In addition, group meetings and contact with other young people in the same stage of life could be of interest for some.
authors.affiliation: Ageing and Health,Norwegian Centre for Research,Education and Service Development,Vestfold Hospital Trust,Tønsberg,Norway.
authors.forename: Maria Lage
authors.initials: ML
authors.lastname: Barca
authors.affiliation: Ageing and Health,Norwegian Centre for Research,Education and Service Development,Vestfold Hospital Trust,Tønsberg,Norway.
authors.forename: Kirsten
authors.initials: K
authors.lastname: Thorsen
authors.affiliation: Ageing and Health,Norwegian Centre for Research,Education and Service Development,Vestfold Hospital Trust,Tønsberg,Norway.
authors.forename: Knut
authors.initials: K
authors.lastname: Engedal
authors.affiliation: Ageing and Health,Norwegian Centre for Research,Education and Service Development,Vestfold Hospital Trust,Tønsberg,Norway.
authors.forename: Per Kristian
authors.initials: PK
authors.lastname: Haugen
authors.affiliation: Ageing and Health,Norwegian Centre for Research,Education and Service Development,Vestfold Hospital Trust,Tønsberg,Norway.
authors.forename: Aud
authors.initials: A
authors.lastname: Johannessen
mesh_terms: D000328:Adult; D032721:Adult Children / Q000523:psychology*; D017668:Age of Onset; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D003704:Dementia / Q000453:epidemiology / Q000523:psychology; D005192:Family Health; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009664:Norway; D036301:Qualitative Research; D012944:Social Support; D012947:Social Work / Q000379:methods / Q000458:organization & administration; D013315:Stress, Psychological / Q000209:etiology; D011795:Surveys and Questionnaires