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EarlyMind-ID: Co-designing an early-signs informant-based checklist and tracking framework for dementia in adults with intellectual disabilities
Acton, Daniel Waites, Robert Lane, Steven Jaydeokar, Sujeet
Acton, Daniel
Waites, Robert
Lane, Steven
Jaydeokar, Sujeet
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Other Contributors
EPub Date
Publication Date
2026-05-15
Submitted Date
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Adobe PDF, 316.22 KB
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Abstract
Background: Adults with intellectual disabilities, particularly those with Down's syndrome, are at increased risk of developing dementia, yet early changes are often subtle and first noticed by family members or paid support staff rather than clinicians. While validated diagnostic instruments exist, they are designed for specialist assessment and serve a different purpose from routine caregiver observation and documentation.
Methods: Using an iterative co-design approach, we combined an updated review of existing instruments, secondary analysis of lived-experience data, discussion groups, consensus workshops, and qualitative usability feedback involving people with intellectual disabilities, family carers, paid support staff and clinicians.
Findings: Co-design identified priority domains reflecting functional, behavioural, emotional and communication changes that may precede diagnosis, particularly among people with Down's syndrome. A 14-item informant-based checklist and tracking framework were developed. Face and content validity were supported through stakeholder review. Users estimated completion time at 10–15 min and reported good acceptability and usability.
Conclusion: EarlyMind-ID represents a co-designed, early-stage checklist and tracking framework intended to support caregiver observation alongside existing diagnostic assessment processes. Further work is required to examine feasibility, implementation and measurement properties before any clinical application.
Citation
Acton, D., Waites, R., Lane, S., & Jaydeokar, S. (2026). EarlyMind-ID: Co-designing an early-signs informant-based checklist and tracking framework for dementia in adults with intellectual disabilities. British Journal of Learning Disabilities, vol(issue), pages. https://doi.org/10.1111/bld.70049
Publisher
Wiley
Journal
British Journal of Learning Disabilities
Research Unit
PubMed ID
PubMed Central ID
Type
Article
Language
en
Description
© 2026 The Author(s). British Journal of Learning Disabilities published by John Wiley & Sons Ltd.
Series/Report no.
ISSN
1354-4187
EISSN
1468-3156