Digital support for self-management and meaningful activities of people with mild dementia: Development, implementation and feasibility of a person-centred touch-screen intervention

This thesis reports on the research that was conducted to develop and pilot test a person-centred touchscreen-based program (FindMyApps intervention) that supports people with mild dementia and their informal carers in how to use a tablet and apps for self-management and meaningful activities. The program consists of the FindMyApps training for informal carers in supporting people with mild dementia in using a tablet and the FindMyApps selection tool designed to help people with mild dementia find apps for self-management and meaningful activities that fit their needs, wishes and abilities. The program was developed following the Medical Research Council (MRC) Framework for the design and evaluation of complex interventions and in co-creation with end users. The chapters of this thesis describe the first three phases of this framework i.e.: the preclinical or theoretical phase (0); the modelling phase (I) and the exploratory trial (II). The execution of an RCT (III), and further implementation (IV) in case the intervention proves effective, are beyond the scope of this thesis. In the first phase user needs studies were performed to identify user requirements for desired self-management and meaningful activities and to identify user-requirements related to the use of apps. Eight focus groups were performed in which people with mild cognitive impairment (MCI) or mild dementia (n=13) and informal carers (n=15) participated. We also conducted a literature review to explore which training interventions are most effective for people with mild dementia in (re)learning how to use technologies, including handheld touchscreen devices. An electronic search was conducted in the following databases: PubMed, APA PsycInfo (EBSCO) and CINAHL (EBSCO). In total 16 studies met the inclusion criteria. Our review contributed to the growing amount of promising evidence on the potential impact of Errorless learning training interventions for people with mild to moderate dementia in (re)learning how to use technology. Based on these results we developed the FindMyApps training. In the second phase of the framework we developed a first concept of the FindMyApps selection tool based on identified user requirements. To ensure its usability, the web-based tool was developed using a ‘user-participatory design’ involving the close collaboration of potential users, a development team (researchers, developers and designers) and an expert team (experts in person-centred dementia care and ICT). In three short iterative rounds – so called ‘sprints’ – the users (people with dementia (n=8) and (in)formal carers (n=10)) were invited to test whether the prototypes were in line with their needs, wishes and abilities. This generated important insights into user-interface aspects relating to (i) useful content and (ii) a user-friendly tool design. In the third phase we pilot tested the FindMyApps intervention by means of individual semi-structured interviews and a pilot randomized controlled exploratory trial. Twenty people with mild dementia and informal carer dyads were randomly assigned to the FindMyApps group (n=10), receiving either the FindMyApps training and selection tool, or a control condition (n=10), receiving only a short tablet training. Pre- and post-test measurements at a three month follow-up, consisted of questionnaires and post-test semi-structured interviews. Based on the qualitative results and the effect sizes on the outcomes measured in this study, we consider that the FindMyApps intervention has the potential to positively influence the self-management and engagement in meaningful activities in people with dementia. Future studies with a larger sample should better indicate whether this expectation can be confirmed. The intervention will be further improved and tested in a larger pilot-RCT study and its effectiveness subsequently evaluated in a definite RCT