Researchers interested in Social health in dementia need to develop instruments to measure the self-management aspect of Social health. Self-management is clearly defined as one of the three domains of Social health besides the capacity to fulfil one’s potential and social participation. Whilst several instruments have been proposed for the measurement of self-management, all have limitations e.g. not measuring the construct as understood in the context of Social health (managing one’s own life), being too burdensome for participants, or ceiling effects on scale of total scores. Instruments which measure the construct of self-management, as understood in this context, without burdening participants and with sufficient discriminatory power for use in intervention studies are needed in order to effectively evaluate interventions aiming to improve Social health in dementia.
Explanation and Examples:
A review of existing instruments which may be used to measure self-management found no options specifically designed to measure the construct as understood in the context of Social health in dementia (to manage one’s own life). In the FindMyApps pilot study, the Self-Management Activities Scale (SMAS) was used, but proved too burdensome to administer. In the FindMyApps definitive randomized controlled trial, another option was used to measure self-management, the Adult Social Care Outcomes Toolkit (ASCOT), which was less burdensome but also less well-aligned to the construct. The usefulness of the ASCOT proved to be further limited by ceiling effects when used in the population participating in this intervention study (people with Mild cognitive impairment Mild cognitive impairment is a condition in which someone has minor problems with cognition - their mental abilities such as memory or thinking. More or mild dementia). Research should be undertaken to confirm consensus amongst people with dementia, their caregivers and researchers in the field on the operational definition of self-management within the context of Social health; to compose statements and scales which investigate the components of the operational definition; and to test the psychometric properties (reliability, validity, responsiveness), feasibility and discriminatory power (precision with which between- and within-subjects variation can be detected) of the resulting instrument in a population of people with Mild cognitive impairment Mild cognitive impairment is a condition in which someone has minor problems with cognition - their mental abilities such as memory or thinking. More/mild dementia, in both an observational and interventional study setting.
ThemesMeasuring instruments Self-management Self-report Social health
Target groupsResearchers Researchers evaluating interventions for self-management
Type of evidence
Systematic review of measuring instruments, results of a randomized controlled trial.
van Leeuwen KM, Bosmans JE, Jansen APD, Rand SE, Towers AM, Smith N, et al. Dutch translation and cross-cultural validation of the adult social care outcomes toolkit (ASCOT). Health Qual Life Outcomes. 2015;12:13(1).
Mangiaracina F, Meiland F, Kerkhof Y, Orrell M, Graff M, Dröes R-M. Self-management and social participation in community-dwelling people with mild dementia: a review of measuring instruments. Int Psychogeriatrics. 2019 6;1–19.
Neal D., Ettema T., Zwan M., Dijkstra K., Finnema E., Graff M., Muller M., Dröes R. M. FindMyApps compared with usual tablet use to promote social health of community-dwelling people with mild dementia and their informal caregivers: a randomised controlled trial, eClinicalMedicine. 2023. 63. https://doi.org/10.1016/j.eclinm.2023.102169
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