title: When dementia is in the house: needs assessment survey for young caregivers.
abstract: OBJECTIVE
  To learn more about the needs and experiences of young carers for patients of frontotemporal dementia (FTD) in order to create a relevant support website for young caregivers to dementia patients.
  
  
  METHODS
  Two focus groups were held with a total of fourteen young carers aged 11-18. The data corpus was collected through a semi-structured interview facilitated by a medical journalist who had prior experience as a caregiver to a patient with FTD. The transcripts were narrowed to a dataset for descriptive analysis using a coding scheme to reveal the main themes of their responses.
  
  
  RESULTS
  Seven overlapping theme areas were: emotional impact of living with a parent with FTD, caregiving, coping, symptoms, diagnosis, relationships, and support. Based on the participants' responses, a website was launched providing supportive information and counsel for young carers.
  
  
  CONCLUSIONS
  Young carers saw the experience of caring for a parent with early-onset dementia as positive overall, but identified opportunities for professionals to assist them in overcoming stigma and the challenge of balancing childhood and adolescent development within this context.
authors.affiliation: Dalhousie University Geriatrics, Halifax, Nova Scotia, Canada.
authors.forename: Katherine R
authors.initials: KR
authors.lastname: Nichols
authors.forename: David
authors.initials: D
authors.lastname: Fam
authors.forename: Cheryl
authors.initials: C
authors.lastname: Cook
authors.forename: Michelle
authors.initials: M
authors.lastname: Pearce
authors.forename: Gail
authors.initials: G
authors.lastname: Elliot
authors.forename: Sylvia
authors.initials: S
authors.lastname: Baago
authors.forename: Kenneth
authors.initials: K
authors.lastname: Rockwood
authors.forename: Tiffany W
authors.initials: TW
authors.lastname: Chow
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D002170:Canada; D017028:Caregivers / Q000523:psychology*; D002648:Child; D016208:Databases, Factual / Q000706:statistics & numerical data; D004644:Emotions / Q000502:physiology; D005260:Female; D017144:Focus Groups / Q000379:methods; D057180:Frontotemporal Dementia / Q000451:nursing*; D006306:Health Surveys; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D020380:Needs Assessment; D012944:Social Support; D014481:United States