title: Caregivers' perspectives on the pre-diagnostic period in early onset dementia: a long and winding road.
abstract: BACKGROUND
  Recognizing and diagnosing early onset dementia (EOD) can be complex and often takes longer than for late onset dementia. The objectives of this study are to investigate the barriers to diagnosis and to develop a typology of the diagnosis pathway for EOD caregivers.
  
  
  METHODS
  Semi-structured interviews with 92 EOD caregivers were analyzed using constant comparative analysis and grounded theory. A conceptual model was formed based on 21 interviews and tested in 29 additional transcripts. The identified categories were quantified in the whole sample.
  
  
  RESULTS
  Seven themes emerged: (1) changes in the family member, (2) disrupted family life, (3) misattribution, (4) denial and refusal to seek advice, (5) lack of confirmation from social context, (6) non-responsiveness of a general practitioner (GP), and (7) misdiagnosis. Cognitive and behavioral changes in the person with EOD were common and difficult to understand for caregivers. Marital difficulties, problems with children and work/financial issues were important topics. Confirmation of family members and being aware of problems at work were important for caregivers to notice deficits and/or seek help. Other main issues were a patient's refusal to seek help resulting from denial and inadequate help resulting from misdiagnosis.
  
  
  CONCLUSIONS
  EOD caregivers experience a long and difficult period before diagnosis. We hypothesize that denial, refusal to seek help, misattribution of symptoms, lack of confirmation from the social context, professionals' inadequate help and faulty diagnoses prolong the time before diagnosis. These findings underline the need for faster and more adequate help from health-care professionals and provide issues to focus on when supporting caregivers of people with EOD.
authors: Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience/Alzheimer Center Limburg, Maastricht University Medical Center+, Maastricht, The Netherlands.
authors: Deliane
authors: D
authors: van Vliet
authors: Marjolein E
authors: ME
authors: de Vugt
authors: Christian
authors: C
authors: Bakker
authors: Raymond T C M
authors: RT
authors: Koopmans
authors: Yolande A L
authors: YA
authors: Pijnenburg
authors: Myrra J F J
authors: MJ
authors: Vernooij-Dassen
authors: Frans R J
authors: FR
authors: Verhey
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D003704:Dementia / Q000175:diagnosis* / Q000523:psychology; D005190:Family / Q000523:psychology; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010342:Patient Acceptance of Health Care / Q000523:psychology