Evidence map›Paper›PMID 40791065›Full record

ArticleAlzheimer's & dementia : the journal of the Alzheimer's Association2025

The road to young-onset dementia diagnosis: Findings from the Joint Solutions Project.

Priscilla Tjokrowijoto, Clare Beard, Debbie Stange, Nathan M D'Cunha, Jade Cartwright, Naomi Moylan, Adrienne Withall, Brian Draper, Theresa Scott, Muireann Irish and 9 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
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

2 citing papers in PubMed.

  1. Article
  2. The road to young-onset dementia diagnosis: Findings from the Joint Solutions Project.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025
    Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

19 authors.

Priscilla TjokrowijotoNeuropsychiatry Centre, Royal Melbourne Hospital, Parkville, VIC, Australia.ORCID 0000-0002-8005-7845
Clare BeardCollege of Education, Psychology and Social Work, Flinders University, Adelaide, SA, Australia.
Debbie StangeWesley College, Melbourne, VIC, Australia.
Nathan M D'CunhaCentre for Ageing Research and Translation, University of Canberra, Bruce, Australia.
Jade CartwrightSchool of Health Sciences, University of Tasmania, Launceston, Tasmania, Australia.
Naomi MoylanBrightwater Care Group, Inglewood, WA, Australia.
Adrienne WithallSchool of Psychology, Faculty of Science, University of New South Wales, Sydney, NSW, Australia.
Brian DraperDiscipline of Psychiatry and Mental Health, University of New South Wales, Sydney, NSW, Australia.
Theresa ScottSchool of Psychology, Faculty of Health Medicine and Behavioural Sciences, University of Queensland, Queensland, Australia.
Muireann IrishSchool of Psychology, Faculty of Science, University of New South Wales, Sydney, NSW, Australia.
Robyn LewisCentre for Ageing Research and Translation, University of Canberra, Bruce, Australia.
Kelly AtkinsSchool of Psychological Sciences, Monash University, Clayton, VIC, Australia.
Claire GoodletBrightwater Care Group, Inglewood, WA, Australia.
Elissa BurtonBrightwater Care Group, Inglewood, WA, Australia.
Rachael CvejicNational Centre of Excellence in Intellectual Disability Health, Faculty of Medicine and Health, University of New South Wales, Sydney, NSW, Australia.
Karen GlennenNeuropsychiatry Centre, Royal Melbourne Hospital, Parkville, VIC, Australia.
Daniel SchweitzerMater Hospital, Brisbane, QLD, Australia.
Monica CationsCollege of Education, Psychology and Social Work, Flinders University, Adelaide, SA, Australia.
Samantha M LoiNeuropsychiatry Centre, Royal Melbourne Hospital, Parkville, VIC, Australia.ORCID 0000-0002-4953-4500

Funding

Young People In Nursing Homes National Alliance
6 · The paper itself

Abstract

introductionDiagnosis of young-onset dementia (YOD) is often delayed due to atypical presentations and lack of awareness. This study explored diagnostic experiences in Australia.

methodsThis Joint Solutions sub-study employed a mixed-methods approach. Surveys and focus groups targeted people with YOD, caregivers, and clinicians across Australia. Quantitative data were analyzed using descriptive statistics and comparisons, while qualitative data underwent thematic analysis.

resultsThere were 313 participants, mostly female and nearly half representing lived experience. The average age at symptom onset was 55.8 years, and at diagnosis, 57.9 years. Positive aspects included timely diagnoses and involvement of specialized clinicians. Clinicians emphasized comprehensive history-taking and a multifaceted diagnostic approach. Geographical barriers, variations in diagnosis delivery, and caregiver education needs were noted. DISCUSSION: This study highlights improved diagnostic timelines but ongoing barriers in YOD knowledge and equitable access to care. Raising awareness, improving clinician education, and streamlining referral processes are essential. HIGHLIGHTS: Timeliness of younger-onset dementia diagnosis appears to have improved in Australia. Access to care varies in availability and quality, with no standardized pathways. Knowledge of younger-onset dementia is lacking in both healthcare and the community. Comprehensive history-taking and a multifaceted diagnostic approach are crucial. Clinician sensitivity is valued, balanced with tailored education on diagnosis.

Indexed as

DementiaAdultAgedAge of OnsetAustraliaCaregiversDelayed DiagnosisFemaleFocus GroupsHumansMaleMiddle AgedSurveys and QuestionnairesAustraliabarrierscare pathwaydiagnosislived experienceopportunitiesyoung‐onset dementia

Identifiers

PMID40791065
PMCPMC12340422

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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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.