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Time to diagnosis in younger-onset dementia and the impact of a specialist diagnostic service

Published online by Cambridge University Press:  28 August 2020

Samantha M. Loi Open the ORCID record for Samantha M. Loi [Opens in a new window] ,
Anita M.Y. Goh ,
Ramon Mocellin ,
Charles B. Malpas ,
Shaun Parker ,
Dhamidhu Eratne ,
Sarah Farrand ,
Wendy Kelso ,
Andrew Evans  and
Mark Walterfang
...Show all authors
Samantha M. Loi*
Affiliation:
Neuropsychiatry, NorthWestern Mental Health, Royal Melbourne Hospital, Parkville, Victoria3050, Australia Melbourne Neuropsychiatry Centre, Department of Psychiatry, The University of Melbourne and Melbourne Health, Grattan Street, Parkville, Victoria3052, Australia
Anita M.Y. Goh
Affiliation:
Neuropsychiatry, NorthWestern Mental Health, Royal Melbourne Hospital, Parkville, Victoria3050, Australia Melbourne Neuropsychiatry Centre, Department of Psychiatry, The University of Melbourne and Melbourne Health, Grattan Street, Parkville, Victoria3052, Australia National Ageing Research Institute, Poplar Road, Parkville, Victoria3052, Australia
Ramon Mocellin
Affiliation:
Delmont Private Hospital, Glen Iris, Victoria3146, Australia
Charles B. Malpas
Affiliation:
Clinical Outcomes Research Unit, Royal Melbourne Hospital, Parkville, Victoria3050, Australia Department of Neurology, Royal Melbourne Hospital, Parkville, Victoria3050, Australia
Shaun Parker
Affiliation:
Monash Health, Clayton, Victoria3169, Australia
Dhamidhu Eratne
Affiliation:
Neuropsychiatry, NorthWestern Mental Health, Royal Melbourne Hospital, Parkville, Victoria3050, Australia Melbourne Neuropsychiatry Centre, Department of Psychiatry, The University of Melbourne and Melbourne Health, Grattan Street, Parkville, Victoria3052, Australia
Sarah Farrand
Affiliation:
Neuropsychiatry, NorthWestern Mental Health, Royal Melbourne Hospital, Parkville, Victoria3050, Australia
Wendy Kelso
Affiliation:
Neuropsychiatry, NorthWestern Mental Health, Royal Melbourne Hospital, Parkville, Victoria3050, Australia Department of Psychology, Monash University, Clayton, Victoria3168, Australia
Andrew Evans
Affiliation:
Department of Neurology, Royal Melbourne Hospital, Parkville, Victoria3050, Australia
Mark Walterfang
Affiliation:
Neuropsychiatry, NorthWestern Mental Health, Royal Melbourne Hospital, Parkville, Victoria3050, Australia Melbourne Neuropsychiatry Centre, Department of Psychiatry, The University of Melbourne and Melbourne Health, Grattan Street, Parkville, Victoria3052, Australia Florey Institute of Neuroscience and Mental Health, Parkville, Victoria3052, Australia
Dennis Velakoulis
Affiliation:
Neuropsychiatry, NorthWestern Mental Health, Royal Melbourne Hospital, Parkville, Victoria3050, Australia Melbourne Neuropsychiatry Centre, Department of Psychiatry, The University of Melbourne and Melbourne Health, Grattan Street, Parkville, Victoria3052, Australia
*
Correspondence should be addressed to: Dr. Samantha M. Loi, Neuropsychiatry, John Cade Level 2, Royal Melbourne Hospital, Parkville, Victoria3050, Australia. Phone: +3 9342 8750. Fax: +3 9342 8483. Email: [email protected].
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Abstract

Objectives:

While early diagnosis of younger-onset dementia (YOD) is crucial in terms of accessing appropriate services and future planning, diagnostic delays are common. This study aims to identify predictors of delay to diagnosis in a large sample of people with YOD and to investigate the impact of a specialist YOD service on this time to diagnosis.

Design:

A retrospective cross-sectional study.

Setting:

The inpatient unit of a tertiary neuropsychiatry service in metropolitan Victoria, Australia.

Participants:

People diagnosed with a YOD.

Measurements and methods:

We investigated the following predictors using general linear modeling: demographics including sex and location, age at onset, dementia type, cognition, psychiatric diagnosis, and number of services consulted with prior to diagnosis.

Results:

A total of 242 inpatients were included. The mean time to diagnosis was 3.4 years. Significant predictors of delay included younger age at onset, dementia type other than Alzheimer’s disease (AD) and behavioral-variant frontotemporal dementia (bvFTD), and increased number of services consulted. These predictors individually led to an increased diagnostic delay of approximately 19 days, 5 months, and 6 months, respectively. A specialized YOD service reduced time to diagnosis by 12 months.

Conclusion:

We found that younger age at onset, having a dementia which was not the most commonly occurring AD or bvFTD, and increasing number of services were significant predictors of diagnostic delay. A novel result was that a specialist YOD service may decrease diagnostic delay, highlighting the importance of such as service in reducing time to diagnosis as well as providing post-diagnostic support.

Keywords

younger-onset dementianeuropsychiatrydiagnosis
Type
Original Research Article
Information
International Psychogeriatrics , Volume 34 , Issue 4: Issue Theme: Varied Facets of Dementia , April 2022 , pp. 367 - 375
Copyright
© International Psychogeriatric Association 2020

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References

Carter, J. E., Oyebode, J. R. and Koopmans, R. (2018). Young-onset dementia and the need for specialist care: a national and international perspective. Aging and Mental Health, 22, 468–473.CrossRefGoogle ScholarPubMed
Cations, M. et al. (2017). Why aren’t people with young onset dementia and their supporters using formal services? Results from the INSPIRED study. PLoS One, 12, e0180935.CrossRefGoogle ScholarPubMed
Deloitte Access Economics 2011. Dementia across Australia: 2011-2050.Google Scholar
Department of Health. 2011. Accessibility Remoteness Index of Australia [Online]. Australian Government. Available at: https://www1.health.gov.au/internet/main/publishing.nsf/Content/E2EE19FE831F26BFCA257BF0001F3DFA/$File/ocpanew14a.pdf.Google Scholar
Draper, B. et al. (2016). Time to diagnosis in young-onset dementia and its determinants: the INSPIRED study. International Journal of Geriatric Psychiatry, 31, 1217–1224.CrossRefGoogle ScholarPubMed
Ferran, J. et al. (1996). The early onset dementias: a study of clinical characteristics and service use. International Journal of Geriatric Psychiatry, 11, 863–869.3.0.CO;2-7>CrossRefGoogle Scholar
Fujihara, S., Brucki, S. M., Rocha, M. S., Carvalho, A. A. and Piccolo, A. C. (2004). Prevalence of presenile dementia in a tertiary outpatient clinic. Arquivos de Neuro-Psiquiatria, 62, 592–595.CrossRefGoogle Scholar
Khan, B. K. et al. (2012). Atypical, slowly progressive behavioural variant frontotemporal dementia associated with C9ORF72 hexanucleotide expansion. Journal of Neurology, Neurosurgery, and Psychiatry, 83, 358–364.CrossRefGoogle ScholarPubMed
Luscombe, G., Brodaty, H. and Freeth, S. (1998). Younger people with dementia: diagnostic issues, effects on carers and use of services. International Journal of Geriatric Psychiatry, 13, 323–330.3.0.CO;2-O>CrossRefGoogle ScholarPubMed
Mackenzie, C. S., Gekoski, W. L. and Knox, V. J. (2006). Age, gender, and the underutilization of mental health services: the influence of help-seeking attitudes. Aging and Mental Health, 10, 574–582.CrossRefGoogle ScholarPubMed
McKhann, G. M. et al. (2011). The diagnosis of dementia due to Alzheimer’s disease: recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimer’s & Dementia, 7, 263–269.CrossRefGoogle Scholar
Panegyres, P. K. and Frencham, K. (2007). Course and causes of suspected dementia in young adults: a longitudinal study. American Journal of Alzheimers Disease and Other Dementias, 22, 48–56.CrossRefGoogle ScholarPubMed
Rascovksy, K. et al. (2011). Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia. Brain, 134, 2456–2477.CrossRefGoogle Scholar
Roberson, E. D. et al. (2005). Frontotemporal dementia progresses to death faster than Alzheimer disease. Neurology, 65, 719–725.CrossRefGoogle ScholarPubMed
Rossor, M. N., Fox, N. C., Mummery, C. J., Schott, J. M. and Warren, J. D. (2010). The diagnosis of young-onset dementia. Lancet Neurology, 9, 793–806.CrossRefGoogle Scholar
Sansoni, J., Duncan, C., Grootemaat, P., Capell, J., Samsa, P. and Westera, A. (2016). Younger onset dementia. American Journal of Alzheimer’s Disease and Other Dementias, 31, 693–705.CrossRefGoogle ScholarPubMed
Shinagawa, S. et al. (2007). Frequency and clinical characteristics of early-onset dementia in consecutive patients in a memory clinic. Dementia and Geriatric Cognitive Disorders, 24, 42–47.CrossRefGoogle ScholarPubMed
Snowden, J. S. et al. (2012). Distinct clinical and pathological characteristics of frontotemporal dementia associated with C9ORF72 mutations, Brain, 135, 693–708.CrossRefGoogle ScholarPubMed
Velakoulis, D., Walterfang, M., Mocellin, R., Pantelis, C. and McLean, C. (2009). Frontotemporal dementia presenting as schizophrenia-like psychosis in young people: clinicopathological series and review of cases. The British Journal of Psychiatry, 194, 298–305.CrossRefGoogle ScholarPubMed
van Vliet, D. et al. (2011). Caregivers’ perspectives on the pre-diagnostic period in early onset dementia: a long and winding road. International Psychogeriatrics, 23, 1393–1404.CrossRefGoogle ScholarPubMed
van Vliet, D. et al. (2013). Time to diagnosis in young-onset dementia as compared with late-onset dementia. Psychological Medicine, 43, 423–432.CrossRefGoogle ScholarPubMed
Walterfang, M., Siu, R. and Velakoulis, D. (2006). The NUCOG: validity and reliability of a brief cognitive screening tool in neuropsychiatric patients. Australian and New Zealand Journal of Psychiatry, 40, 995–1002.CrossRefGoogle ScholarPubMed
Withall, A., Draper, B., Seeher, K. and Brodaty, H. (2014). The prevalence and causes of younger onset dementia in Eastern Sydney, Australia. International Psychogeriatrics, 26, 1955–1965.CrossRefGoogle ScholarPubMed
Woolley, J. D., Khan, B. K., Murthy, N. K., Miller, B. L. and Rankin, K. P. (2011). The diagnostic challenge of psychiatric symptoms in neurodegenerative disease: rates of and risk factors for prior psychiatric diagnosis in patients with early neurodegenerative disease. The Journal of Clinical Psychiatry, 72, 126–133.CrossRefGoogle ScholarPubMed
Zilkens, R. R., Bruce, D. G., Duke, J., Spilsbury, K. and Semmens, J. B. (2014). Severe psychiatric disorders in mid-life and risk of dementia in late- life (age 65-84 years): a population based case-control study. Current Alzheimer Research, 11, 681–693.CrossRefGoogle ScholarPubMed