title: Time to diagnosis in young-onset dementia and its determinants: the INSPIRED study.
abstract: The objective of this study is to identify factors determining the time to diagnosis for young-onset dementia (YOD), defined as dementia with symptom onset before age 65 years, by mapping the diagnostic pathways.
  
  
  
  Participants were recruited via healthcare professionals, community support organisations or were self-referred. Information was obtained by interviews with the person with YOD and their carer, and medical record reviews. Clinical dementia diagnoses were independently ratified by consensus review.
  
  
  
  Participants included 88 people with YOD (mean age of onset = 55.4 years), due to Alzheimer's disease (AD) (53.4%, n = 47), frontotemporal dementia (FTD) (15.9%, n = 14) and other causes (30.7%, n = 27). Median time from symptom onset to first consultation was 2.3 years, to dementia diagnosis 3.2 years, to family awareness of dementia diagnosis 3.5 years and to final diagnosis of the type of dementia 4.7 years. Non-dementia diagnoses occurred in 48.9%, including depression (30.7%) and mild cognitive impairment (MCI) (17.0%). Participants with younger age of onset had significantly longer time to first consultation and family awareness of the dementia diagnosis. The time to dementia diagnosis was significantly longer when the participant presented with MCI or depression and when the dementia was other than AD or FTD. MCI was associated with significantly longer time to family awareness of dementia diagnosis.
  
  
  
  Factors impacting on time to diagnosis vary with the stage of diagnosis in YOD. Longer time to dementia diagnosis occurred in people who were younger at symptom onset, when MCI or depression was present, and in dementias other than AD and FTD. Copyright © 2016 John Wiley & Sons, Ltd.
authors.affiliation: Dementia Collaborative Research Centre - ABC, School of Psychiatry, University of NSW, Sydney, NSW, Australia. b.draper@unsw.edu.au.|Academic Department for Old Age Psychiatry, Prince of Wales Hospital, Randwick, NSW, Australia. b.draper@unsw.edu.au.
authors.forename: Brian
authors.initials: B
authors.lastname: Draper
authors.affiliation: Dementia Collaborative Research Centre - ABC, School of Psychiatry, University of NSW, Sydney, NSW, Australia.|School of Public Health and Community Medicine, UNSW, Sydney, NSW, Australia.
authors.forename: Monica
authors.initials: M
authors.lastname: Cations
authors.affiliation: Dementia Collaborative Research Centre - ABC, School of Psychiatry, University of NSW, Sydney, NSW, Australia.
authors.forename: Fiona
authors.initials: F
authors.lastname: White
authors.affiliation: Centre for Healthy Brain Ageing, UNSW Australia, Sydney, NSW, Australia.|Department of Developmental Disability Neuropsychiatry, School of Psychiatry, UNSW Australia, Sydney, NSW, Australia.
authors.forename: Julian
authors.initials: J
authors.lastname: Trollor
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.
authors.forename: Clement
authors.initials: C
authors.lastname: Loy
authors.affiliation: Dementia Collaborative Research Centre - ABC, School of Psychiatry, University of NSW, Sydney, NSW, Australia.|Academic Department for Old Age Psychiatry, Prince of Wales Hospital, Randwick, NSW, Australia.|Centre for Healthy Brain Ageing, UNSW Australia, Sydney, NSW, Australia.
authors.forename: Henry
authors.initials: H
authors.lastname: Brodaty
authors.affiliation: Dementia Collaborative Research Centre - ABC, School of Psychiatry, University of NSW, Sydney, NSW, Australia.|Centre for Healthy Brain Ageing, UNSW Australia, Sydney, NSW, Australia.|Neuropsychiatric Institute, Prince of Wales Hospital, Sydney, NSW, Australia.
authors.forename: Perminder
authors.initials: P
authors.lastname: Sachdev
authors.affiliation: Division of Aged and Extended Care (Southcare), Sutherland Hospital, South Eastern Sydney Local Health District, Sydney, NSW, Australia.
authors.forename: Peter
authors.initials: P
authors.lastname: Gonski
authors.affiliation: The Langton Centre, South Eastern Sydney Local Health District, Drug and Alcohol Services, Surry Hills, NSW, Australia.
authors.forename: Apo
authors.initials: A
authors.lastname: Demirkol
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.
authors.forename: Robert G
authors.initials: RG
authors.lastname: Cumming
authors.affiliation: School of Public Health and Community Medicine, UNSW, Sydney, NSW, Australia.
authors.forename: Adrienne
authors.initials: A
authors.lastname: Withall
mesh_terms: D017668:Age of Onset; D000544:Alzheimer Disease / Q000175:diagnosis; D060825:Cognitive Dysfunction / Q000175:diagnosis; D003704:Dementia / Q000175:diagnosis* / Q000523:psychology; D003866:Depressive Disorder / Q000175:diagnosis; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D062706:Prodromal Symptoms; D012017:Referral and Consultation / Q000706:statistics & numerical data; D013997:Time Factors
keywords: diagnosis; pathways to care; young-onset dementia