Evidence map›Paper›PMID 34279544›Full record

SynthesisJAMA neurology2021

Global Prevalence of Young-Onset Dementia: A Systematic Review and Meta-analysis.

Stevie Hendriks, Kirsten Peetoom, Christian Bakker, Wiesje M van der Flier, Janne M Papma, Raymond Koopmans, Frans R J Verhey, Marjolein de Vugt, Sebastian Köhler, Young-Onset Dementia Epidemiology Study Group and 26 more

Open access · bronzeAbstract readMeta-AnalysisSystematic Review
In one paragraph

Synthesis in JAMA neurology, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 193 papers, 9 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
193citing papers in PubMed, 9 pooled it
35.6field-weighted citation impact, top 1% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

193 citing papers in PubMed, 9 syntheses or guidelines pooled it, 358 citations in OpenAlex.

  1. Prevalence and Incidence of Dementia for Schizophrenia and Other Primary Psychotic Disorders: A Systematic Review and Meta-Analysis.Asia-Pacific psychiatry : official journal of the Pacific Rim College of Psychiatrists · 2026
    Pooled it
  2. The Experience of Stigma Within the Young Onset Dementia (YOD) Population: A Systematic Review of Qualitative Research.Health expectations : an international journal of public participation in health care and health policy · 2026
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  11. One of the Many Things That I've Learned on This Journey…: A Co-operative, Narrative Inquiry With Two Care Partners of Spouses With Young Onset Dementia.Health expectations : an international journal of public participation in health care and health policy · 2026
    Article
  12. Mapping the Young-Onset Dementia Research in the Asia-Pacific Region: A Scoping Review.Asia-Pacific psychiatry : official journal of the Pacific Rim College of Psychiatrists · 2026
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133 more citing papers are in PubMed but not listed here.

4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

36 authors at 16 institutions in 12 countries.

Stevie HendriksDepartment of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Alzheimer Centre Limburg, Maastricht University, Maastricht, the Netherlands.
Kirsten PeetoomDepartment of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Alzheimer Centre Limburg, Maastricht University, Maastricht, the Netherlands.
Christian BakkerDepartment of Primary and Community Care, Radboud University Medical Center, Radboud, the Netherlands.
Wiesje M van der FlierDepartment of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC (University Medical Center), Amsterdam, the Netherlands.
Janne M PapmaDepartment of Neurology, Erasmus University Medical Center, Rotterdam, the Netherlands.
Raymond KoopmansDepartment of Primary and Community Care, Radboud University Medical Center, Radboud, the Netherlands.
Frans R J VerheyDepartment of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Alzheimer Centre Limburg, Maastricht University, Maastricht, the Netherlands.
Marjolein de VugtDepartment of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Alzheimer Centre Limburg, Maastricht University, Maastricht, the Netherlands.
Sebastian KöhlerDepartment of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Alzheimer Centre Limburg, Maastricht University, Maastricht, the Netherlands.
Young-Onset Dementia Epidemiology Study Group
Adrienne WithallSchool of Public Health and Community Medicine, Faculty of Medicine, University of New South Wales, Sydney, Australia.
Juliette L ParlevlietDepartment of Internal Medicine, Section of Geriatric Medicine, Academic Medical Center, University of Amsterdam, Amsterdam, the Netherlands.
Özgül Uysal-BozkirDepartment of Internal Medicine, Section of Geriatric Medicine, Academic Medical Center, University of Amsterdam, Amsterdam, the Netherlands.
Roger C GibsonDepartment of Community Health and Psychiatry, University of the West Indies, Kingston, Jamaica.
Susanne M NeitaDepartment of Community Health and Psychiatry, University of the West Indies, Kingston, Jamaica.
Thomas Rune NielsenDepartment of Psychology, Faculty of Social Sciences, University of Copenhagen, Copenhagen, Denmark.
Lise C SalemDepartment of Psychology, Faculty of Social Sciences, University of Copenhagen, Copenhagen, Denmark.
Jenny NybergCentre for Brain Repair and Rehabilitation, Institute for Neuroscience and Psychology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
Marcos Antonio LopesDepartment of Internal Medicine, Federal University of Santa Catarina, Florianópolis, Brazil.
Jacqueline C DominguezSt Luke's Medical Center, Quezon City, Metro Manila, Philippines.
Ma Fe De GuzmanSt Luke's Medical Center, Quezon City, Metro Manila, Philippines.
Alexander EgebergDepartment of Cardiology, Herlev and Gentofte Hospital, University of Copenhagen, Hellerup, Denmark.
Kylie RadfordSchool of Medical Sciences, University of New South Wales, Sydney, Australia.
Tony BroeSchool of Medical Sciences, University of New South Wales, Sydney, Australia.
Mythily SubramaniamResearch Division, Institute of Mental Health Singapore, Singapore.
Edimansyah AbdinResearch Division, Institute of Mental Health Singapore, Singapore.
Amalia C BruniRegional Neurogenetic Centre, Azienda Sanitaria Provinciale Catanzaro, Lamezia Terme, Italy.
Raffaele Di LorenzoRegional Neurogenetic Centre, Azienda Sanitaria Provinciale Catanzaro, Lamezia Terme, Italy.
Kate SmithWestern Australian Centre for Health and Aging, University of Western Australia, Perth, Australia.
Leon FlickerWestern Australian Centre for Health and Aging, University of Western Australia, Perth, Australia.
Merel O MolDepartment of Neurology, Erasmus University Medical Center, Rotterdam, the Netherlands.
Maria BastaDepartment of Psychiatry, University Hospital of Heraklion, University of Crete, Heraklion, Greece.
Doris YuThe Nethersole School of Nursing, Faculty of Medicine, Chinese University of Hong Kong, Hong Kong.
Golden MasikaThe Nethersole School of Nursing, Faculty of Medicine, Chinese University of Hong Kong, Hong Kong.
Maria S PetersenDepartment of Occupational Medicine and Public Health, The Faroese Hospital System, Tórshavn, Faroe Islands.
Luis RuanoEPIUnit-Instituto de Saude Publica, University of Porto, Porto, Portugal.
Maastricht University · NLUniversity of Copenhagen · DKThe University of Western Australia · AUUNSW Sydney · AUAmsterdam UMC Location University of Amsterdam · NLInstitute of Mental Health · SGRadboud University Nijmegen · NLUniversidade Federal de Santa Catarina · BRUniversity of Crete · GRUniversity of the Faroe Islands · FOUniversity of the West Indies System · JMAmsterdam Neuroscience · NLChinese University of Hong Kong · HKErasmus MC · NLi3S - Instituto de Investigação e Inovação em Saúde, Universidade do Porto · PTSt. Luke's Medical Center · PH

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Importance: Reliable prevalence estimates are lacking for young-onset dementia (YOD), in which symptoms of dementia start before the age of 65 years. Such estimates are needed for policy makers to organize appropriate health care. Objective: To determine the global prevalence of YOD. Data Sources: The PubMed, Embase, CINAHL, and PsycInfo databases were systematically searched for population-based studies on the prevalence of YOD published between January 1, 1990, and March 31, 2020. Study Selection: Studies containing data on the prevalence of dementia in individuals younger than 65 years were screened by 2 researchers for inclusion in a systematic review and meta-analysis. Data Extraction and Synthesis: Prevalence estimates on 5-year age bands, from 30 to 34 years to 60 to 64 years, were extracted. Random-effects meta-analyses were conducted to pool prevalence estimates. Results were age standardized for the World Standard Population. Heterogeneity was assessed by subgroup analyses for sex, dementia subtype, study design, and economic status based on the World Bank classification and by meta-regression. Main Outcomes and Measures: Prevalence estimates of YOD for 5-year age bands. Results: A total of 95 unique studies were included in this systematic review, of which 74 with 2 760 379 unique patients were also included in 5-year age band meta-analyses. Studies were mostly conducted in Europe and in older groups in Asia, North America, and Oceania. Age-standardized prevalence estimates increased from 1.1 per 100 000 population in the group aged 30 to 34 years to 77.4 per 100 000 population in the group aged 60 to 64 years. This gives an overall global age-standardized prevalence of 119.0 per 100 000 population in the age range of 30 to 64 years, corresponding to 3.9 million people aged 30 to 64 years living with YOD in the world. Subgroup analyses showed prevalence between men and women to be similar (crude estimates for men, 216.5 per 100 000 population; for women, 293.1 per 100 000 population), whereas prevalence was lower in high-income countries (crude estimate, 663.9 per 100 000 population) compared with upper-middle-income (crude estimate, 1873.6 per 100 000 population) and lower-middle-income (crude estimate, 764.2 per 100 000 population) countries. Meta-regression showed that age range (P < .001), sample size (P < .001), and study methodology (P = .02) significantly influenced heterogeneity between studies. Conclusions and Relevance: This systematic review and meta-analysis found an age-standardized prevalence of YOD 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 organize sufficient health care for this subgroup of individuals with dementia. Study Registration: PROSPERO CRD42019119288.

Indexed as

Age of OnsetAdultDementiaFemaleHumansMaleMiddle AgedPrevalence

Identifiers

PMID34279544
PMCPMC8290331
OpenAlexW3184429840

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.