Diagnosis and prevalence

Here you will find a collection of young onset dementia research studies related to diagnosis and prevalence data.    

Some of the links we provide are to the abstract only.  For a full paper it may be necessary to subscribe to the site or to pay a fee.

Title: Risk factors for young onset dementia in the UK Biobank
Summary – 2023 study looked at modifiable risk factors associate with young onset dementia. The study showed that several factors, mostly modifiable, were associated with a higher risk of young onset dementia. These modifiable risk factors should be incorporated in future dementia prevention initiatives and raise new therapeutic possibilities for younger people living with dementia. Click here

Title: Recent research advances in young onset dementia
Summary – 2023 publication summarises recent literature in young onset dementia, focusing on updates in epidemiology, diagnosis and service provision. Click here

Title: Age of symptom onset and longitudinal course of sporadic Alzheimer’s disease, frontotemporal dementia, and vascular dementia: a systematic review and meta-analysis
Summary – 2022 publication that aims to understand how the age of dementia symptom onset affects the longitudinal course of dementia which can assist with prognosis and care planning . Click here

Title: Differences in care between younger and older patients in the 2019 English national memory service audit
Summary – 2022 paper analyses how practice varied between patients aged <65 and ≥65 years in the 2019 UK national memory service audit. Click here

Title: Prevalence of all cause young onset dementia and time lived with dementia: analysis of primary care health records
Summary – 2022 study designed to calculate the prevalence of young onset dementia using primary care electronic health records in England and to determine the length of time lived with dementia in relation to current age. The estimated prevalence figure for young onset in this analysis provides a truer estimate of people living with young onset dementia in England because it includes all people with this diagnosis irrespective of their current age. Click here

Title: Time to diagnosis in young onset dementia and the impact of the specialist diagnostic service
Summary – 2022 publication of a study that was aimed at identifying predictors of delay to diagnosis in a large sample of people with young onset dementia and to investigate the impact of a specialist young onset service on this time to diagnosis. Click here

Title: Pre-diagnostic symptoms of young onset dementia in the general practice up to five years before diagnosis
Summary – 2022 study that aims to identifies early symptoms that are more common in the pre-diagnostic phase of young onset dementia. Click  here

Title: An integrative literature review on the nomenclature and definition of dementia at a young age
Summary – 2021 literature review to explore operational definitions and define dementia at a young age. Despite relative consensus on the term young onset dementia and an age at symptom onset being used as a cut-off criterion, much is still unclear concerning possible etiologies of dementia at a young age. In this study, controversies were detected for discussion in an international consensus study. Click here

Title: Provisional consensus on the nomenclature and operational definition of dementia at a young age, a Delphi study
Summary – 2021 study was part of the Prevalence Recognition and Care pathways in young Onset DEmentia (PRECODE) project on the prevalence, incidence, definition, and care pathways of dementia at a young age. The Delphi study was designed to reach agreement on which definitions are most appropriate for this group of people. Click here

Title: Global prevalence of young onset dementia. A systematic review and meta-analysis
Summary – 2021 study designed to determine the global prevalence of young onset dementia. This systematic review and meta-analysis found an age-standardized prevalence of young onset dementia of 119.0 per 100 000 population, although estimates of the prevalence in low-income countries and younger age ranges remain scarce. These results should help policy makers organise sufficient health care for this subgroup of individuals with dementia. Click here

Title: Post-current UK clinical practice in diagnosing dementia in younger adults: compliance with quality indicators in electronic health records from mental health trusts
Summary – 2021 study designed to examine current UK practice in diagnosis of patients under 65 with young onset dementia, within 5 years of date of diagnosis, identified from electronic health records of 8 NHS mental health trusts. Findings confirmed variation in clinical practice and identified commonly missed items in examination and enquiry compared to expert consensus. Click here 

Title: Post-diagnosis young-onset dementia care in the National Disability Insurance Scheme
Summary – 2021 paper outlines the Australian experience of recognising the diagnosis of young onset dementia as a disability. The objective of this study was to examine experiences and satisfaction with disability services so far among people with young-onset dementia and their care partners and identify strategies for service and system improvement. Click here

Title: New insights into atypical Alzheimer’s disease in the era of biomarkers
Summary – 2021 review paper outlines how availability of cerebrospinal fluid (CSF) and radiological biomarkers of Alzheimer’s disease pathologies and incorporation of atypical forms of Alzheimer’s disease eg  visual, language and behavioural variants) into new diagnostic criteria increasingly allows them to be more confidently diagnosed early in their illness. Increasing use of Alzheimer’s disease biomarkers in clinical practice and greater recognition of diverse subtypes can ensure early diagnosis, timely treatment, and appropriate support. Click here

Title: International consensus on quality indicators for comprehensive assessment of dementia in young adults using a modified e-Delphi approach
Summary – 2020 consensus that recommends a minimum standard and gold standard for the diagnostic workup of young onset dementia. The standards provide a clinically useful tool for decision-making, particularly for generalists and those with less experience in the field. The standards will be used to inform a UK case note audit of recently diagnosed patients with young onset dementia. Click here

Title: Imaging biomarkers in neurodegeneration: current and future practices
Summary – 2020 review focusses on neuroimaging, specifically positron emission tomography (PET) and magnetic resonance imaging (MRI), giving an overview of the current established practices clinically and in research as well as new techniques being developed. We will also discuss the use of machine learning (ML) techniques within these fields to provide additional insights to early diagnosis and multimodal analysis. Particular types of biomarkers will be more valuable in diagnosing young onset dementia than in later onset dementia where the brain related changes caused by ageing limit their use. Click here

Title: Young-onset dementia: scoping review of key pointers to diagnostic accuracy
Summary – 2019 review evaluates the current evidence about best practice in diagnosis to guide thorough assessment of the complex presentations of young onset dementia with a view to upskilling professionals in the field. The evidence presented supports the view that a multi-disciplinary/multi-specialist assessment within a specialist service or centre is necessary for establishing a young onset diagnosis. Integration between specialists and partnership with a broad range of services (including third sector) is vital to help connect patients and their families with support at home and in their community. Click here

Title: Delays in diagnosis for people with young onset dementia
Summary – 2019 study investigates the time to diagnosis and number of consultations for people diagnosed with young onset dementia. Click here

Title: Receiving a diagnosis of young onset dementia: a scoping review of lived experiences
Summary – 2019 review suggests that improving the recognition of presenting symptoms, reducing diagnostic errors and identifying the emotional needs arising from diagnosis are required to improve the diagnostic experience for younger adults. Click here

Title: Young onset dementia: scoping review of key pointers to diagnostic accuracy
Summary – 2019 review evaluates the current evidence about best practice in diagnosis to guide thorough assessment of the complex presentations of young onset dementia with a view to upskilling professionals in the field. Click here

Title: Time to diagnosis in young onset dementia and its determinants: the INSPIRED study
Summary – 2016  study that identified that factors determining the time to diagnosis for young onset dementia. Click here