Best Practice Guidance
Human Interaction with Technology in Dementia

Guidance

The choice for a tablet-based intervention should be based on an assessment of the characteristics of the tablet-users and their specific needs and potential to benefit from the intervention. Care providers should consider prioritizing people with MCI and younger people with MCI/mild dementia to receive tablet-based interventions.

Explanation and Examples:

Evidence from the FindMyApps project showed that on average, tablet interventions could be effective to promote participation in social and other meaningful activities. However, the results also showed that tablets seem to be particularly effective for people with a diagnosis of MCI compared to those with a diagnosis of mild dementia. Regardless of the diagnosis, the results also suggest that younger people with MCI/mild dementia also benefit more from tablet-based interventions than older people. The choice for a tablet-based intervention should therefore be based on an assessment of the tablet-user characteristics, in addition to their needs and potential to benefit from it.

Guidance

The ecological validity and cultural context in which the technology will be implemented should be taken into account, to ensure it is applicable to the ‘real life situation’ of the person with dementia

Explanation and example

When cognitive rehabilitation is applied to people with dementia, it is necessary to consider the ecological validity of each tool or instrument used to perform cognitive rehabilitation, training or stimulation. Ecological validity is determined by the ability of those tools, instruments or techniques used for cognitive training to be transferred to the patient’s daily life. Therefore, the patient may feel that using these techniques or tools in their daily lives can bring them benefits and influence their daily life, “beyond the rehabilitation session”. For example: Gradior includes images of real objects which are well-known to the users. These objects are close to those of real life, among others: calculation exercises associated with real adult life (shopping at a supermarket), presents quizzes of daily activities (prepare a specific recipe). New technologies for rehabilitation or cognitive training should consider ecological validity as their main objective otherwise it may not be appropriate for the person with dementia who uses it.

The context is a factor that must be considered in the design of new technologies, that is, it is not enough to delimit the population and its characteristics. For example: a technology may be applied in an urban context but not necessarily in a rural one, due to the difficulties that this context may have in terms of the existence and scope of communication systems (internet connection, presence of devices, etc.).

Consequently, Gradior was developed free of contents. This means that it is easy to change the contents of the software and objects interacting with the person with dementia. In this way, it can be fitted to different environments in an easy way. It is necessary that the exercises and objects have significance to the users.

Guidance

Meaningful activities for people with dementia have proven value for their social health. Exergaming is an innovative way of exercising in a gaming environment. This movement activity may be experienced as meaningful by the persons with dementia, is considered fun to do and has benefits for them as well as for their relatives.

Explanation and example

Exergaming was compared to usual activities in a cluster Randomized Controlled Trial among day care centres for people with dementia. In this study exergaming consisted of interactive cycling using a stationary bicycle (i.e. home trainer) connected to a screen. The screen displays various routes which the participant can select and this mimics the experience of cycling outside, thus offering simultaneous physical and cognitive stimulation.

Positive effects in favour of exergaming were found on cognition and social functioning in people with dementia and on carers’ distress related to their relative’s neuropsychiatric symptoms and the carers’ sense of competence. Furthermore, persons with dementia, family carers and staff were satisfied with the exergaming intervention.

Exergaming can thus be considered a meaningful activity, and a good alternative when outdoor physical activities are not possible because of weather conditions or safety risks (fall incidents, wandering).

Guidance

When persons with dementia use technology for meaningful activities this may not only impact their own quality of life but also the well-being of their (primary) family carers.

Explanation and example

In the exergaming project, people with dementia were engaged in an exergaming activity or activities as usual in day care centres. We studied the effects on persons with dementia as well as on their family carers. In carers, positive effects were found in favour of the exergaming intervention, i.e. on the carers’ distress related to their relative’s neuropsychiatric symptoms and the carers’ sense of competence (after a three months intervention period).

Guidance

Effectiveness research into eHealth interventions for community dwelling persons with dementia, often rely on information from and involvement of family carers. As they may already be (over)burdened by their caregiver tasks, participation in effectiveness research may be denied. It will be helpful to think of methods to support informal carers to participate in research.

Explanation and example

In the exergaming project, a bottleneck of participation of couples into the effectiveness study, was the refusal of family carers to participate because they were already (over)burdened. To accommodate caregivers they were offered support in filling out questionnaires and a little present to thank them for their contribution. This seems to have added slightly in the number of participants in our study. Other strategies to alleviate burden of participation in eHealth research may also be considered, like data logging or ecological momentary assessments.

Guidance

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.

Guidance

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:

• 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.

Guidance

See recommendation no. 3.2.5.1

Guidance

Care providers should consider providing people with mild cognitive impairment (MCI) or mild dementia with the FindMyApps tablet-based intervention, or even a usual tablet without FindMyApps if accompanied with appropriate training, as an effective way of improving their social participation.

Explanation and Examples:

Evidence from the FindMyApps project has identified increases in social participation associated with use of the tablet-based FindMyApps intervention or a usual tablet without FindMyApps, when accompanied by appropriate training. The improvements were slightly more pronounced with the FindMyApps intervention than with a tablet without FindMyApps, particularly with respect to the diversity of social activities in which people participated (as opposed to the overall frequency of social activities). Evidence was also found for people with MCI/mild dementia experiencing apathy prior to receiving the interventions having better quality of life outcomes when they received FindMyApps. All improvements found were small.

Caregivers’ sense of competence refers to how well caregivers feel they can provide care for their family member with dementia or friend, and for how long. Evidence from the FindMyApps project has identified that the FindMyApps intervention is associated with a greater sense of competence for caregivers (moderate effect size) of community-dwelling people with MCI/mild dementia than a normal tablet and should therefore be implemented by preference to a normal tablet.