Evaluating personalised eHealth interventions for people with dementia and their caregivers: mplementation, effects and cost-effectiveness of the FindMyApps intervention

This thesis presents research conducted to evaluate the FindMyApps eHealth intervention for people with dementia and their informal caregivers. The primary goals were to evaluate the effectiveness and cost-effectiveness of FindMyApps for promoting self-management and social participation of people with mild dementia, and sense of competence of their caregivers. Worldwide, the prevalence of dementia is growing rapidly. The individual and economic impacts of dementia are significant. People with dementia experience unmet needs around managing their own lives and engaging in social activities, despite these key aspects of social health being important to maintaining good quality of life. Informal caregivers of people with dementia experience worse health outcomes than people caring for friends or family with other chronic health conditions, and need support to provide good care. eHealth interventions are considered promising tools to address the urgent needs of both people with dementia and their informal caregivers. However, there are a number of barriers to implementing digital technologies for people with dementia, and there are very few studies which robustly evaluate the effectiveness or cost-effectiveness of eHealth tools for people with dementia. FindMyApps is a personalised eHealth intervention designed to support people with mild dementia and their caregivers to find and learn to use easy-to-use tablet-based apps, which meet their personal needs and interests. Behavioural theory supports an expectation that the intervention would lead to adoption of tablet apps, which have potential to improve self-management (through use of medicine reminders and diaries, for example) and social participation of people with dementia (for example, through video calling or instant messaging) and by unburdening the informal caregiver, improve their caregiver’s sense of competence (feeling able to provide good care). To evaluate the effectiveness and cost-effectiveness of complex eHealth interventions like FindMyApps, a randomised controlled trial design, including a parallel process evaluation and economic evaluation, is the gold standard. Conducting a gold standard evaluation of FindMyApps is the focus of this thesis. The thesis comprises a general introduction followed by eight further chapters: a systematic review and narrative synthesis of controlled studies evaluating effectiveness of digital technologies used by people with dementia; a pilot RCT comparing FindMyApps to regular tablet use; a protocol for a definitive FindMyApps RCT; a mixed methods process evaluation conducted alongside the FindMyApps RCT, following UK MRC guidance; main results of the RCT, reported in line with CONSORT guidance; results of a cost-effectiveness analysis; a study scoping the cognitive accessibility of privacy information associated with health and wellness apps; and a general discussion of the results of all the above studies. We conclude that whilst FindMyApps was not shown to contribute directly to better social health outcomes for people with dementia than a regular tablet, FindMyApps is a cost-effective tool for supporting caregivers’ sense of competence and should therefore be implemented by preference to a regular tablet. With respect to facilitators and barriers, it remains important to make eHealth interventions personalised, tailored to the needs of individuals and groups of users with specific needs, such as people with dementia. Methodological considerations and generalisability of the results of the research presented are considered, particularly noting the (potential) impact of the COVID-19 pandemic. Finally, recommendations for policy, practice and future research are made, with respect to FindMyApps and eHealth in dementia in general.