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; Robyn Lewis; Kelly Atkins; Claire Goodlet; Elissa Burton; Rachael Cvejic; Karen Glennen; Daniel Schweitzer; Monica Cations; Samantha M Loi

doi:10.1002/alz.70538

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, Robyn Lewis, Kelly Atkins, Claire Goodlet, Elissa Burton, Rachael Cvejic, Karen Glennen, Daniel Schweitzer, Monica Cations, Samantha M Loi

College of Education, Psychology and Social Work

Research output: Contribution to journal › Article › peer-review

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Abstract

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

METHODS
This 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.

RESULTS
There 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.

Original language	English
Article number	e70538
Number of pages	11
Journal	Alzheimer's & dementia : the journal of the Alzheimer's Association
Volume	21
Issue number	8
DOIs	https://doi.org/10.1002/alz.70538
Publication status	Published - Aug 2025

Keywords

Australia
barriers
care pathway
diagnosis
lived experience
opportunities
young-onset dementia

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1002/alz.70538Licence: CC BY

Final published versionFinal published version, 249 KBLicence: CC BY

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Tjokrowijoto, P., Beard, C., Stange, D., D’Cunha, N. M., Cartwright, J., Moylan, N., Withall, A., Draper, B., Scott, T., Irish, M., Lewis, R., Atkins, K., Goodlet, C., Burton, E., Cvejic, R., Glennen, K., Schweitzer, D., Cations, M., & Loi, S. M. (2025). The road to young‐onset dementia diagnosis: Findings from the Joint Solutions Project. Alzheimer's & dementia : the journal of the Alzheimer's Association, 21(8), Article e70538. https://doi.org/10.1002/alz.70538

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title = "The road to young‐onset dementia diagnosis: Findings from the Joint Solutions Project",

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.DISCUSSIONThis 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.",

keywords = "Australia, barriers, care pathway, diagnosis, lived experience, opportunities, young-onset dementia",

author = "Priscilla Tjokrowijoto and Clare Beard and Debbie Stange and D{\textquoteright}Cunha, {Nathan M} and Jade Cartwright and Naomi Moylan and Adrienne Withall and Brian Draper and Theresa Scott and Muireann Irish and Robyn Lewis and Kelly Atkins and Claire Goodlet and Elissa Burton and Rachael Cvejic and Karen Glennen and Daniel Schweitzer and Monica Cations and Loi, {Samantha M}",

year = "2025",

month = aug,

doi = "10.1002/alz.70538",

language = "English",

volume = "21",

journal = "Alzheimer's & dementia : the journal of the Alzheimer's Association",

issn = "1552-5279",

publisher = "Wiley",

number = "8",

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Tjokrowijoto, P, Beard, C, Stange, D, D’Cunha, NM, Cartwright, J, Moylan, N, Withall, A, Draper, B, Scott, T, Irish, M, Lewis, R, Atkins, K, Goodlet, C, Burton, E, Cvejic, R, Glennen, K, Schweitzer, D, Cations, M & Loi, SM 2025, 'The road to young‐onset dementia diagnosis: Findings from the Joint Solutions Project', Alzheimer's & dementia : the journal of the Alzheimer's Association, vol. 21, no. 8, e70538. https://doi.org/10.1002/alz.70538

TY - JOUR

T1 - The road to young‐onset dementia diagnosis

T2 - Findings from the Joint Solutions Project

AU - Tjokrowijoto, Priscilla

AU - Beard, Clare

AU - Stange, Debbie

AU - D’Cunha, Nathan M

AU - Cartwright, Jade

AU - Moylan, Naomi

AU - Withall, Adrienne

AU - Draper, Brian

AU - Scott, Theresa

AU - Irish, Muireann

AU - Lewis, Robyn

AU - Atkins, Kelly

AU - Goodlet, Claire

AU - Burton, Elissa

AU - Cvejic, Rachael

AU - Glennen, Karen

AU - Schweitzer, Daniel

AU - Cations, Monica

AU - Loi, Samantha M

PY - 2025/8

Y1 - 2025/8

N2 - 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.DISCUSSIONThis 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.

AB - 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.DISCUSSIONThis 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.

KW - Australia

KW - barriers

KW - care pathway

KW - diagnosis

KW - lived experience

KW - opportunities

KW - young-onset dementia

U2 - 10.1002/alz.70538

DO - 10.1002/alz.70538

M3 - Article

SN - 1552-5279

VL - 21

JO - Alzheimer's & dementia : the journal of the Alzheimer's Association

JF - Alzheimer's & dementia : the journal of the Alzheimer's Association

IS - 8

M1 - e70538

ER -

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

Abstract

Keywords

UN SDGs

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