Pilot feasibility, acceptability, and tolerability of researcher-delivered apolipoprotein E ( <i>APOE</i> ) disclosure via videoconferencing in Australian adults at-risk of dementia

Background In Australia, access to Alzheimer's disease (AD) therapeutics requires apolipoprotein E ( APOE ) genotype testing and disclosure, yet the feasibility, acceptability and tolerability of APOE disclosure in an Australian context remains unknown. Objective This pilot study evaluated a researcher-delivered, videoconferencing-based APOE disclosure protocol in cognitively unimpaired (CU) Australian adults with dementia family history. Methods The DISCLOSE- APOE protocol, informed by prior expert approaches and Australian consumer preferences, was piloted in fifteen CU adults aged 40–70 (8 ε4 carriers, 7 non-carriers). The protocol comprised 7 online sessions, including mood/suicide risk assessment, education, and psychological readiness evaluation. APOE genotype was disclosed 1:1 via videoconferencing using a standardized interaction procedure. Existing data and online questionnaires assessed participant characteristics and outcomes pre- and post-disclosure. Paired-samples t-tests examined within-group mood changes, and independent-samples t-tests compared post-disclosure test-/event-related distress between carriers and non-carriers. Results All participants (M age = 60.8 (±6.4), 60% female) completed the pilot, and no adverse events occurred. Baseline mood was equivalent across groups. Anxiety decreased post-disclosure in both ε4 carriers and non-carriers. Depressive symptoms increased slightly but not significantly in ε4 carriers and remained sub-threshold. Test-related distress was moderately higher in ε4 carriers post-disclosure. Conclusions Researcher-delivered and remote APOE disclosure via videoconferencing resulted in no attrition nor clinically-significant short-term psychological distress, with pilot data providing preliminary evidence of feasibility, acceptability and tolerability in this cohort. Findings will inform the development and implementation of culturally-appropriate and scalable APOE disclosure protocols in research and clinical settings to facilitate delivery of anti-Aβ therapies in Australia.

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Publication Details

Journal
Journal of Alzheimer s Disease
Published
2026-06-18
DOI
https://doi.org/10.1177/13872877261459068
Primary Topic
Dementia and Cognitive Impairment Research
Type
article
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article

Pilot feasibility, acceptability, and tolerability of researcher-delivered apolipoprotein E ( APOE ) disclosure via videoconferencing in Australian adults at-risk of dementia

Emily Rosenich, Yen Ying Lim, Lisa Bransby, Paul Maruff et al.
Journal of Alzheimer s Disease
Dementia and Cognitive Impairment Research
article

Pilot feasibility, acceptability, and tolerability of researcher-delivered apolipoprotein E ( APOE ) disclosure via videoconferencing in Australian adults at-risk of dementia

Emily Rosenich, Yen Ying Lim, Lisa Bransby, Paul Maruff, Hannah Olver, Ruby Haeusler, Hannah Cummins, Simran Chauhan, Mirette Keriakes
article en

Abstract

Background In Australia, access to Alzheimer's disease (AD) therapeutics requires apolipoprotein E ( APOE ) genotype testing and disclosure, yet the feasibility, acceptability and tolerability of APOE disclosure in an Australian context remains unknown. Objective This pilot study evaluated a researcher-delivered, videoconferencing-based APOE disclosure protocol in cognitively unimpaired (CU) Australian adults with dementia family history. Methods The DISCLOSE- APOE protocol, informed by prior expert approaches and Australian consumer preferences, was piloted in fifteen CU adults aged 40–70 (8 ε4 carriers, 7 non-carriers). The protocol comprised 7 online sessions, including mood/suicide risk assessment, education, and psychological readiness evaluation. APOE genotype was disclosed 1:1 via videoconferencing using a standardized interaction procedure. Existing data and online questionnaires assessed participant characteristics and outcomes pre- and post-disclosure. Paired-samples t-tests examined within-group mood changes, and independent-samples t-tests compared post-disclosure test-/event-related distress between carriers and non-carriers. Results All participants (M age = 60.8 (±6.4), 60% female) completed the pilot, and no adverse events occurred. Baseline mood was equivalent across groups. Anxiety decreased post-disclosure in both ε4 carriers and non-carriers. Depressive symptoms increased slightly but not significantly in ε4 carriers and remained sub-threshold. Test-related distress was moderately higher in ε4 carriers post-disclosure. Conclusions Researcher-delivered and remote APOE disclosure via videoconferencing resulted in no attrition nor clinically-significant short-term psychological distress, with pilot data providing preliminary evidence of feasibility, acceptability and tolerability in this cohort. Findings will inform the development and implementation of culturally-appropriate and scalable APOE disclosure protocols in research and clinical settings to facilitate delivery of anti-Aβ therapies in Australia.

Journal of Alzheimer s Disease
The University of Melbourne (AU), Australian Regenerative Medicine Institute (AU), Monash University (AU)
Good health and well-being
Openalex Percentile: Top 6%
Dementia and Cognitive Impairment Research
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