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

Centre for Ageing Research & Translation

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

2 Citations (Scopus)

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
Pages (from-to)	2-11
Number of pages	11
Journal	Alzheimer's and Dementia
Volume	21
Issue number	8
DOIs	https://doi.org/10.1002/alz.70538
Publication status	Published - 2025

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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 and Dementia, 21(8), 2-11. Article e70538. https://doi.org/10.1002/alz.70538

@article{61c719a70fe245898685c92e019a8063,

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

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.",

keywords = "Humans, Female, Dementia/diagnosis, Age of Onset, Australia, Male, Middle Aged, Caregivers, Focus Groups, Surveys and Questionnaires, Adult, Delayed Diagnosis, Aged, young onset dementia",

author = "Priscilla Tjokrowijoto and Clare Beard and Debbie Stange and D'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}",

note = "{\textcopyright} 2025 The Author(s). Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.",

year = "2025",

doi = "10.1002/alz.70538",

language = "English",

volume = "21",

pages = "2--11",

journal = "Alzheimer's and Dementia",

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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 and Dementia, vol. 21, no. 8, e70538, pp. 2-11. 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

Y1 - 2025

N2 - 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.

AB - 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.

KW - Humans

KW - Female

KW - Dementia/diagnosis

KW - Age of Onset

KW - Australia

KW - Male

KW - Middle Aged

KW - Caregivers

KW - Focus Groups

KW - Surveys and Questionnaires

KW - Adult

KW - Delayed Diagnosis

KW - Aged

KW - young onset dementia

U2 - 10.1002/alz.70538

DO - 10.1002/alz.70538

M3 - Article

C2 - 40791065

SN - 1552-5260

VL - 21

SP - 2

EP - 11

JO - Alzheimer's and Dementia

JF - Alzheimer's and Dementia

IS - 8

M1 - e70538

ER -

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

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