Self-management and social participation in community-dwelling people with mild dementia: a review of measuring instruments.

BACKGROUND: In order to evaluate interventions promoting social health in people with dementia it is essential to have reliable and valid measures. The present review aims to provide an overview of available instruments for the assessment of two domains of social health in community-dwelling people with mild dementia, i.e., the ability to manage life with some degree of independence (self-management) and participation in social activities. METHODS: An electronic search was conducted in the following databases: PubMed, CINAHL, and PsycINFO. Characteristics of the instruments, feasibility and psychometric properties of the instruments included are reported on. RESULTS: We identified eight instruments measuring aspects of self-management and three instruments measuring social participation. Validity and reliability of self-management instruments varied between moderate and good. Little information was found on the psychometric properties of the instruments for social participation. In general, feasibility and responsiveness data regarding application in community-dwelling people with dementia were scarce for both types of instruments. CONCLUSIONS: Future research into assessment tools for social health should focus on the development of instruments for self-management that also cover the areas of coping with and adapting to the emotional consequences of the disease; instruments for social participation covering the involvement in social interactions that are experienced as meaningful by the person; and on the psychometric properties and responsiveness of instruments. More attention should also be given to the feasibility (ease of use) of these instruments for people with mild dementia, professionals, and researchers.

Randomized controlled feasibility study of FindMyApps: first evaluation of a tablet-based intervention to promote self-management and meaningful activities in people with mild dementia.

OBJECTIVES: We tested the feasibility, implementation strategy and mechanism of impact of FindMyApps. FindMyApps is a tablet intervention consisting of a selection tool to help people with dementia find usable apps for self-management and meaningful activities, including training to support informal carers in employing errorless learning principles to help people with dementia learn tablet and tool usage. METHODS: We conducted an exploratory, pilot randomized controlled trial with a mixed-methods design. Twenty persons with mild dementia and 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. RESULTS: The FindMyApps tool was mostly perceived as useful and easy to use. Persons with dementia were generally able to learn how to use the tool, though they regularly needed support from informal carers. Persons with dementia found apps through the tool, which they used regularly. Persons with dementia and informal carers were positive about the training and support they received. No significant differences were found on outcome measures of persons with dementia, but based on effect sizes FindMyApps is a promising intervention. CONCLUSIONS: Qualitative results indicate that the FindMyApps intervention has the potential to positively influence the self-management abilities and engagement in meaningful activities of people with dementia. Remarks are made to improve the intervention and recommendations are given for future effectiveness studies.Implications for rehabilitationThe person-centred tablet intervention FindMyApps has the potential to positively influence the self-management and engagement in meaningful activities in people with dementia.Based on the input of persons with dementia and informal carers, the FindMyApps intervention and study procedure will be further improved and evaluated in terms of effectiveness in an RCT.

User-participatory development of FindMyApps; a tool to help people with mild dementia find supportive apps for self-management and meaningful activities.

OBJECTIVE: There is growing evidence that hand-held touchscreen devices (tablets) can support people with mild dementia to manage their life and engage in meaningful activities. However, as it can be difficult to find apps that match one's personal needs, wishes and abilities, a person-centred selection tool was developed, called FindMyApps. METHOD: To ensure its usability, the FindMyApps selection tool was developed using a 'user-participatory design' in which users (persons with dementia and informal carers), and experts (designers, developers and researchers) closely collaborated. In three short iterative rounds - so called 'sprints' - the users were invited to test whether the prototypes harmonised with their needs, wishes and abilities. RESULTS: Each sprint provided insight into potential improvements of the tool. The development team gained an understanding of issues regarding usefulness (e.g. meaningful content of (sub)categories for apps in domains of self-management and meaningful activities), as well as issues to increase the user-friendliness (e.g. intuitive design with instructive navigation support). CONCLUSION: The FindMyApps selection tool was conceived as a means to make it easier for people with mild dementia to select apps meeting their needs, wishes and abilities. This provisional end version will be further tested, and, if necessary, improved in a feasibility study.