Time to diagnosis in young-onset dementia and its determinants: the INSPIRED study

Brian Draper, Monica Cations, Fiona White, Julian Trollor, Clement Loy, Henry Brodaty, Perminder Sachdev, Peter Gonski, Apo Demirkol, Robert G. Cumming, Adrienne Withall

Research output: Contribution to journalArticle

23 Citations (Scopus)

Abstract

Objective: 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. Methods: 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. Results: 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. Conclusions: 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.

LanguageEnglish
Pages1217-1224
Number of pages8
JournalInternational Journal of Geriatric Psychiatry
Volume31
Issue number11
DOIs
Publication statusPublished - 1 Nov 2016
Externally publishedYes

Keywords

  • diagnosis
  • pathways to care
  • young-onset dementia

ASJC Scopus subject areas

  • Geriatrics and Gerontology
  • Psychiatry and Mental health

Cite this

Draper, Brian ; Cations, Monica ; White, Fiona ; Trollor, Julian ; Loy, Clement ; Brodaty, Henry ; Sachdev, Perminder ; Gonski, Peter ; Demirkol, Apo ; Cumming, Robert G. ; Withall, Adrienne. / Time to diagnosis in young-onset dementia and its determinants : the INSPIRED study. In: International Journal of Geriatric Psychiatry. 2016 ; Vol. 31, No. 11. pp. 1217-1224.
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abstract = "Objective: 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. Methods: 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. Results: 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. Conclusions: 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.",
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Draper, B, Cations, M, White, F, Trollor, J, Loy, C, Brodaty, H, Sachdev, P, Gonski, P, Demirkol, A, Cumming, RG & Withall, A 2016, 'Time to diagnosis in young-onset dementia and its determinants: the INSPIRED study', International Journal of Geriatric Psychiatry, vol. 31, no. 11, pp. 1217-1224. https://doi.org/10.1002/gps.4430

Time to diagnosis in young-onset dementia and its determinants : the INSPIRED study. / Draper, Brian; Cations, Monica; White, Fiona; Trollor, Julian; Loy, Clement; Brodaty, Henry; Sachdev, Perminder; Gonski, Peter; Demirkol, Apo; Cumming, Robert G.; Withall, Adrienne.

In: International Journal of Geriatric Psychiatry, Vol. 31, No. 11, 01.11.2016, p. 1217-1224.

Research output: Contribution to journalArticle

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AU - Draper, Brian

AU - Cations, Monica

AU - White, Fiona

AU - Trollor, Julian

AU - Loy, Clement

AU - Brodaty, Henry

AU - Sachdev, Perminder

AU - Gonski, Peter

AU - Demirkol, Apo

AU - Cumming, Robert G.

AU - Withall, Adrienne

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N2 - Objective: 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. Methods: 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. Results: 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. Conclusions: 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.

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