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

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.

Socio‐economic predictors of time to care home admission in people living with dementia in Wales: A routine data linkage study

“…Limited research has specifically explored the predictors of time to care home admission, yet not focused on SES and was limited by its small sample of people with AD and Lewy Body dementia; 29 Yaffe et al, 2002 18 . The timeliness of the initial dementia diagnosis can be a limitation in the present study, as it is well known that there are severe delays in getting a diagnosis in the first place 30 . This means that some people might receive a diagnosis whilst already being in the more advanced stages of the condition, whilst others might have received a diagnosis more quickly, which will inevitably have an implication on the time to care home placement.…”

“…-515 dementia diagnosis can be a limitation in the present study, as it is well known that there are severe delays in getting a diagnosis in the first place. 30 This means that some people might receive a diagnosis whilst already being in the more advanced stages of the condition, whilst others might have received a diagnosis more quickly, which will inevitably have an implication on the time to care home placement. Unfortunately, no data were available on first symptom recognition, as this data linkage used routinely collected data.…”

A call to action for the improved identification, diagnosis, treatment and care of people with young onset dementia

“…Our work demonstrated that a multidisciplinary specialist YOD clinic within a tertiary hospital decreases the time to diagnosis (Loi et al, 2020). We propose the implementation of a 'hub-and-spoke' model (Elrod and Fortenberry, 2017) in which at least one specialist YOD clinic is available in each state/territory.…”

“…Alzheimer's disease, frontotemporal dementia) and a range of neurological disorders and substance and injuryrelated disabilities. An average 4.7year delay in diagnosis occurs partly because early symptoms can differ from the typical late-life presentation (Loi et al, 2020). People with YOD and their families face significant distress and burden owing to their familial, professional and financial responsibilities at the time of symptom onset (Cations et al, 2017).…”

Investigating the clinical utility of biomarkers and other novel tests in younger onset neurocognitive disorders: the BeYOND study, protocol for a longitudinal clinical study in a real-world setting

“…Previous work in the area has highlighted the various challenges related to YOD. These include the heterogeneous nature of symptom presentation which can lead to diagnostic delay (Draper et al, 2016;Loi et al, 2020b;van Vliet et al, 2013), difficulties with access to appropriate service provision for both the patient and their families (Sansoni et al, 2016;Cations et al, 2017), and the associated distress and psychiatric effects on both of these parties (van Vliet et al, 2011). In addition, authors have suggested diagnostic instability in YOD, particularly in people who present with psychiatric symptoms (Woolley et al, 2011;Perry et al, 2019).…”