JMIR Publications

ABSTRACT

Background:

People living with dementia or mild cognitive impairment often experience limited access to structured post-diagnostic monitoring and support, particularly within community settings. Digital health technologies may help address these gaps by enabling ongoing monitoring of health, wellbeing, and cognitive function. However, many existing digital tools have limited accessibility and are insufficiently co-produced with people living with dementia, care partners, and healthcare professionals.

Objective:

This study aimed to co-produce and iteratively develop a digital monitoring system, Co-Cog, to support post-diagnostic monitoring of health, wellbeing, and cognition in people living with dementia or mild cognitive impairment, and to evaluate its usability and acceptability.

Methods:

A participatory co-production and usability design was employed between March 2022 and June 2024. The development process comprised three iterative phases: (1) stakeholder consultation and information gathering, (2) co-production and system development, and (3) pilot usability testing. Participants included people living with dementia or mild cognitive impairment, informal care partners, and dementia health and care professionals. Data were collected through interviews, focus groups, co-production workshops, feedback journals, and pilot testing interviews. Qualitative data were analysed iteratively using content-informed thematic approaches to identify priorities relating to accessibility, usability, monitoring domains, and implementation considerations.

Results:

Stakeholders identified substantial unmet needs in post-diagnostic monitoring and strongly supported the development of an accessible digital tool capable of facilitating ongoing support and earlier identification of health or wellbeing concerns. Co-production partners prioritised monitoring domains including mood, sleep, mobility, social engagement, medication management, sensory difficulties, continence, delirium symptoms, and care partner wellbeing. Accessibility and usability refinements included simplified language, pictorial response scales, auditory support features, streamlined navigation, dynamic question presentation, and gamified cognitive assessments. Pilot usability testing demonstrated overall acceptability and ease of use, although some participants reported barriers relating to installation and digital literacy. The first fully functional Co-Cog prototype incorporates two linked components: a patient- and care partner-facing smartphone app, and a workforce-facing interface that includes a red-amber-green triage system, intended to support future clinical integration.

Conclusions:

This study demonstrates the feasibility of co-producing an accessible digital health system for post-diagnostic monitoring in dementia and mild cognitive impairment. Close collaboration with people living with dementia, care partners, and professionals was critical to ensuring usability, accessibility, and clinical relevance. Further research is required to evaluate longitudinal engagement, implementation within healthcare services, and psychometric and clinical validity.