Social Health Domain 2: Manage ones own life and promote independence
More high quality, ecologically valid, controlled studies must be planned, funded and executed in order to properly evaluate the effectiveness of technologies designed to be used by people with dementia and to improve social participation and self-management.
Explanation and examples
A systematic review found that in the whole world only nine controlled evaluation studies with technologies designed for people with dementia have been carried out in ecologically valid settings, to assess effectiveness in improving social participation and self-management. Controlled studies are the most effective way of conducting unbiased evaluations, from which causal inference can be drawn. Policy-makers should be demanding this level of evidence as a condition of investment in such technologies. So far, studies have been conducted with VR-based technologies, other wearable technologies, and software applications. However, only a single study was found to be of good quality. Other technologies for people with dementia have not yet been the subject of a single ecologically-valid, controlled study with these outcomes (this includes, for example, social robots). In order to conduct high quality studies, researchers must ensure that studies are adequately statistically powered based on a sufficiently large sample; include active technology-based control interventions, so that is controlled for attention; and conduct and report intention-to-treat analyses, taking into account data of all participant to the study, including dropouts, and not only those who completed the intervention. Funding bodies must recognize the need to fund such studies accordingly. Clinicians, healthcare providers, policymakers and users of technology should expect and demand that such high-quality evidence is available to support decision-making.
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Ensure that the methodology for the evaluation of social robots for older adults with and without dementia is appropriate for the purpose of the study, to strengthen the results of the study.
Explanation and examples
Social robots are seen promising for supporting daily functioning and promoting overall social health of cognitively impaired older people, particularly those with dementia. Our scoping review into methodologies used to study the feasibility, usability, efficacy, and effectiveness of social robots for elderly adults with and without dementia showed that, despite promising results, the quality of studies remains low due to various methodological limitations. We have therefore formulated recommendations focusing on different types of studies that can help future researchers develop appropriate study designs to evaluate social robots, allowing for more reliable information on study outcomes:
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- For feasibility and usability studies an experimental design with mixed-methods of data collection (qualitative and quantitative) are recommended. Multiple interaction sessions with the social robot are recommended as they may reveal changes in feasibility and usability, when the novelty effect gradually fades and people get used to the robot.
- Appropriate designs for efficacy and effectiveness studies are RCTs, or quasi-experimental designs when randomization is not feasible. Sample sizes should be sufficiently large, and individual interaction sessions with the social robot running for more than one month would serve best for such studies to obtain relatively robust and reliable results. Efficacy and effectiveness should only be studied in fully functioning social robots.
- It is strongly recommended not to combine different aims in one study. The preferred designs to study the feasibility and usability of a social robot, differ significantly from the designs needed to study efficacy or effectiveness.
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 MCI 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 MCI/mild dementia, in both an observational and interventional study setting.
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