Paper · act · mcdc · 2025
Development of a Digital Anticipatory Care Tool for People Living with Dementia: A Co-Design and Technical Validation Study
The development and technical description of ACT.
Mark Brill, J. Harry Whalley
Abstract
Dementia affects almost one million people in the United Kingdom, with approximately one-fifth of associated hospital admissions considered preventable through earlier identification of wellbeing changes. Non-clinical caregivers, who are often best positioned to notice subtle deterioration, lack structured observational frameworks to guide and communicate their concerns. This paper reports the co-design, development, and technical description of the Anticipatory Care Tool (ACT), a digital application that provides non-clinical caregivers with a structured framework for observing and reporting wellbeing changes in people living with dementia. The development process drew on analysis of eight established clinical assessment instruments, co-design workshops with professional care staff, family caregivers, healthcare professionals, and technology specialists, and iterative prototyping informed by the NASSS framework. ACT implements a 16-item observation framework across four domains using a five-point Likert scale, with longitudinal tracking, weighted scoring, and an automated alert system. Prospective evaluation of usability, feasibility, and clinical impact is planned as the next phase of this programme of research.
In plain language
Before ACT, non-clinical carers — family, regular visitors, care-home staff without specialist training — lacked a structured way to record the subtle changes they were often first to notice in a person living with dementia. This paper describes the two-year effort to close that gap: analysing eight established clinical assessment instruments (6CIT, ACE-III, CGA, MoCA, MMSE, NPI, Barthel Index, and the Electronic Frailty Index), running co-design workshops with professional care staff, family carers, healthcare professionals, and people living with dementia at Memory Matters (Plymouth) and Lifecare (Edinburgh), and iterating the app against the NASSS framework for successful health-technology adoption.
The resulting tool — 16 observation items across four domains, completable in under five minutes, with longitudinal tracking and a red-flag detection layer — is documented here in full, from interface to algorithm. A prospective evaluation of usability, feasibility, and clinical impact follows as the next phase.
Novel contributions
- A concrete design pathway from established clinical assessment instruments to a framework usable without clinical training.
- The first published application of Greenhalgh et al.’s NASSS framework to a music-programme-derived care technology.
- A 16-item, four-domain observation model (physical health, wellbeing, behavioural, cognitive) designed for longitudinal use by non-specialist observers — distinct in that respect from every instrument the design was derived from.
Context within MCDC
ACT is Component 3 of the MCDC framework. This paper documents ACT as a standalone observational platform; the MCDC white paper places it inside the broader music-centred care cycle, where ACT ingests session data from M-CST-ob and daily Memory Tracks engagement data alongside its own 16-item questionnaire.
Status and availability
- Status: under review.
- Corresponding author: Mark Brill, UCA Business School for the Creative Industries ·
mbrill@uca.ac.uk - Keywords: dementia care; digital health; anticipatory care; co-design; health informatics; NASSS framework
Open questions for Harry
- Target journal and submission date (if you'd like either surfaced)
- Inclusion of the Supplementary Information on algorithm calibration as a downloadable PDF on this site
- DOI or preprint link once assigned