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

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

doi:10.1002/gps.4430

Cited by 141 publications

(193 citation statements)

References 19 publications

(27 reference statements)

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“…A detailed description of recruitment appears elsewhere [21]. Briefly, people with YOD and/or their supporters from across metropolitan Sydney and the South Coast of NSW were invited to participate via health professionals, service providers and general advertising.…”

Section: Methodsmentioning

confidence: 99%

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Why aren't people with young onset dementia and their supporters using formal services? Results from the INSPIRED study

et al. 2017

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Background/AimsDespite reporting high levels of burden, supporters of people with young onset dementia (YOD) underuse formal community services. Previous quantitative studies in YOD are of limited utility in guiding service design because they did not consider important contextual barriers to service use. The aim of this study was to identify all relevant barriers and describe the service features considered most important to improving uptake by people with YOD and their supporters.MethodsEighty-six people with consensus-confirmed YOD (mean onset age 55.3 years) and/or their primary supporter participated in quantitative interviews, and 50 also participated in one of seven qualitative focus groups. Interview participants reported levels of community service use and reasons for non-use, functional impairment, behavioural and psychological symptoms, supporter burden, social network, and informal care provision. Focus group participants expanded on reasons for non-use and aspects of an ideal service.ResultsAlthough at least one community service was recommended to most participants (96.8%), 66.7% chose not to use one or more of these. Few of the clinical or demographic factors included here were related to service use. Qualitative analyses identified that lack of perceived need, availability, and YOD-specific barriers (including ineligibility, unaffordability, lack of security, lack of childcare) were commonly reported. Five aspects of an ideal service were noted: unique, flexibile, affordable, tailored, and promoting meaningful engagement.ConclusionPeople with YOD and their families report that formal community services do not meet their personal and psychological needs. Researchers can provide ongoing assessment of program feasibility, suitability, and generalisability.

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Section: Methodsmentioning

confidence: 99%

“…In addition to demographic details collected at interview, details regarding dementia diagnosis were obtained from the clinical consensus process [21]. Time spent caregiving (as primary and direct supporter) was calculated as months between the participant’s age at symptom onset and age at interview or at placement in residential care.…”

Section: Methodsmentioning

confidence: 99%

Why aren't people with young onset dementia and their supporters using formal services? Results from the INSPIRED study

et al. 2017

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“…Clinical scenarios in middle‐aged patients that should alert the clinician to perform a formal cognitive assessment using a standardised cognitive screening instrument, as well as obtaining a collateral history from family or friends, are listed in Table . In the INSPIRED study of YOD in Sydney and the NSW South Coast, we investigated the diagnostic pathway, and preliminary analyses indicate that factors that increase the time to diagnosis include mild cognitive impairment (MCI) and depression in the prodromal phase and having a non‐Alzheimer dementia …”

Section: The Diagnostic Journeymentioning

confidence: 99%

Young onset dementia

Draper

Withall²

2016

Internal Medicine Journal

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Young onset dementia (YOD), where symptoms of dementia have an onset before the age of 65, has become more prominent due to the population increase from the Baby Boomer generation. This clinical perspective examines key issues in the assessment, diagnosis and management of YOD. Challenges in the assessment and diagnosis of YOD are partly due to the diverse range of types of YOD, where degenerative dementias are less common and secondary dementias more common than in late onset dementia. Early symptoms are broad and include depression, behavioural change, neurological disorders, systemic disorders and mild cognitive impairment (MCI). Perceived diagnostic delay may result in frustration and distress in people with YOD and their families. Chronic depression and MCI are associated with longer time to diagnosis, and in these situations, clinicians need to establish appropriate review processes and communicate clearly. A diagnosis of YOD may have marked consequences for a younger person, including early retirement, financial impacts and the psychological challenge of coming to grips with cognitive decline. Partners, children and other supporters often have unmet needs, feel burdened by care and are at high risk of physical and emotional consequences. Concerns about the heritability of dementia may add to family distress. Recent community service developments in Australia for YOD are outlined and the challenges of residential care described.

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“…Behavioral changes are common debut symptoms in YOD [6, 7], and often misattributed to stress or depression. However, the phenotype of AD in younger people may also diverge from what is seen in older people, with atypical presentations [8] contributing to misattribution of symptoms and prolonged time to diagnosis [2, 9]. The progression of YOD seems to have a more malignant course compared to late-onset dementia (LOD), with more rapid decline and shorter survival [10-12].…”

Section: Introductionmentioning

confidence: 99%

“…Raised awareness of dementia disorders in younger people over the past decade may lead to an increasing number of younger people receiving the YOD diagnosis. Still, the published prevalence rates of younger people living with dementia may be underestimated as the estimates are mainly registry based, and receiving a correct and timely diagnosis is still a great challenge [2, 3]. Two major subtypes of YOD are AD and frontotemporal dementia (FTD) [4].…”

Section: Introductionmentioning

confidence: 99%

Quality of Life in People with Young-Onset Alzheimer’s Dementia and Frontotemporal Dementia

Hvidsten

Engedal

Selbæk

et al. 2018

Dement Geriatr Cogn Disord

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Aims: The aims of this study were to compare quality of life (QOL) in people with young-onset Alzheimer’s (AD) and frontotemporal (FTD) dementia, explore variables associated with QOL, and compare QOL in young-onset dementia (YOD) and late-onset dementia (LOD). Methods: Cross-sectional data from a Nordic multicenter study of 50 community-dwelling participants with AD and 38 with FTD were included. A comparison group consisted of 100 people with LOD. QOL was measured using self-reported Euro-QOL 5-Dimension and the proxy version of Quality of Life in Alzheimer’s Disease (QOL-AD) questionnaire. Neuropsychiatric symptoms and needs were assessed using the Cornell Scale for Depression in Dementia (CSDD), Neuropsychiatric Inventory (NPI), and Camberwell Assessment of Needs in the Elderly. Multiple linear regression and multilevel modeling was used to determine variables associated with QOL. Results: We found no differences between the two YOD groups in QOL. The variables associated with QOL were scores on the CSDD, NPI, and unmet needs. The proxy QOL-AD score in YOD was significantly higher compared to LOD (median 36.0 [IQR 10.0] vs. 33.0 [IQR 9.0]). Conclusion: The QOL in Nordic people with YOD was better compared to people with LOD. Our results show depressive symptoms to be associated with QOL irrespective of age and diagnosis.

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

Abstract: 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.

Cited by 141 publications

References 19 publications

Why aren't people with young onset dementia and their supporters using formal services? Results from the INSPIRED study

Why aren't people with young onset dementia and their supporters using formal services? Results from the INSPIRED study

Young onset dementia

Quality of Life in People with Young-Onset Alzheimer’s Dementia and Frontotemporal Dementia

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