Best Practice Guidance
Human Interaction with Technology in Dementia

Recommendations

Evaluating the effectiveness of specific contemporary technology

The rapid growth of the technological landscape and related new services have the potential to improve the effectiveness and cost-effectiveness of health and social services and facilitate social participation and engagement in activities. But which technology is effective and how is this evaluated best?
This section provides recommendations to evaluate the effectiveness of technology in daily life, meaningful activities and healthcare services as well as of technologies aimed to promote the Social Health of people with dementia. Examples of useful technologies in some of these areas are provided.

Technology for meaningful activities

Pay attention to psychological coping when evaluating the impact of technology

Guidance

When evaluating the impact of technology on the self-management of people with dementia, it is recommended to also evaluate how people succeed in coping psychologically and emotionally with the consequences of dementia in their daily life.

Explanation and examples

Measures to assess self-management in people with mild dementia evaluate how people compensate for their functional disabilities in daily life, but do not rate how people cope psychologically and emotionally with the consequences of dementia in their daily life (e.g. maintaining positive thinking and relationships), which is also a component of self-management. It is recommended to use additional instruments such as the Jalowiec Coping scale (1984) or the Qualidem (Ettema et al, 2007) for these aspects when assessing the impact of technology on self-management.

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Personalized feedback and sustained support for carers using the experience sampling method

Guidance

When using smartphone-based digital self-monitoring/experience sampling in carers of people with dementia, consider providing personalized feedback to promote emotional well-being and stimulate the undertaking of more activities they enjoy (e.g. relaxation activities).

Explanation and examples

‘Experience sampling’ (ESM)-based smartphone apps can offer solutions to raise awareness of enjoyable activities, strengthen learned coping strategies, and provide (long- term) support in everyday life. The ‘Partner in Sight’ intervention has been found to decrease perceived stress as well as negative affect, and to increase sense of competence in carers.

However, an increase in passive relaxation activities was only achieved with personalized feedback. Long-term support could be achieved by adding additional features, such as booster sessions, micro interventions (short version of the original intervention) or ad-hoc counseling after the main intervention period, through cost-effective and common technologies (smartphone apps, webpages, emails, telephones).

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Technical problems should be solved before evaluating the effectiveness of new tablet interventions for people with dementia

Guidance

Pilot studies should be conducted to help inform and reduce technical problems and improve accuracy prior to evaluating the effectiveness of new tablet interventions

Explanation and example

Our feasibility study of FindMyApps, a digital programme helping people with dementia to find useful apps for self-management and meaningful activities, showed that when people experienced technical problems they were sometimes not able to provide useful feedback about FindMyApps. For instance, some participants did not use the intervention anymore after they encountered technical problems. Even though a development and pilot study were conducted technical problems still occurred, such as: apps not being available anymore, explanation videos which did not work, personal settings not being saved, the button to go back being difficult to find, and links that did not work. To ensure that technical problems are resolved timely and do not interact with the evaluation of the tablet intervention, it is important to monitor for technical barriers by regular contact with people using the intervention in evaluation studies.

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Pay attention to contextual, implementation, and mechanisms of impact factors when evaluating technological interventions

Guidance

When evaluating the benefits of technological interventions for people with dementia and their carers it is recommended to conduct a process evaluation to understand the possible influence of contextual, implementation and mechanisms of impact factors that may have influenced the intervention outcomes. This will also provide useful information on the conditions for successful implementation of the intervention.

Explanation and example

In our randomised controlled exploratory pilot trial into the FindMyApps programme, a tablet-based selection tool and training to help people with dementia to find apps for better self-management and meaningful activities, we conducted a process evaluation based on the British Medical Research Council’s (MRC) guidance for process evaluation of complex interventions (Moore et al., 2015).

This framework highlights the possible influence that contextual, implementation and mechanisms of impact factors may have on intervention outcomes. The process evaluation in the FindMyApps study provided very relevant information. For instance, with regard to contextual factors we found that it is important that the person with dementia has someone who is easy to approach and who can help them in case of practical problems, and that a helpdesk is in place for more complicated questions and technical problems.

With regard to implementation, it proved important to check if and how much a participant had experience in working with technological devices, and to adapt their training accordingly. Additionally, it proved necessary to personalise the approach to a participants’ awareness of their deficits. This was largely because some people with dementia had a more accurate understanding of their abilities and limitations with respect to their deficits than others. With regard to mechanisms of impact, we found that users who regularly practiced and who’s caregivers helped them by means of the errorless learning method learned to use FindMyApps easier than users who practiced less and who’s caregivers were less active in guiding them by using errorless learning.

This information is not only relevant for the outcome evaluation, but also to get insight into conditions for successful implementation of FindMyApps.

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In order to help people with dementia and their carers find dementia-friendly apps for self-management and meaningful activities a selection tool is desirable

Guidance

People with dementia can have difficulty finding apps for self-management, meaningful activities and social participation that match their needs, interests and abilities. A tool that helps them find such apps is therefore recommended.

Explanation and example

People with dementia often experience unmet needs in their self-management, meaningful activities and social participation. Apps and technological interventions can potentially help them fulfil these needs and also decrease the burden for caregivers.

The last decade many apps have been developed that can support people with dementia in managing daily life, engaging in activities and staying in touch with their social network. However, people with dementia may have difficulty finding apps that match their needs, interests and abilities, FindMyApps is a selection tool that aims to help people find, download and use apps for self-management and meaningful activities, which are dementia-friendly and meet their needs, interests and capabilities.

A randomized controlled exploratory trial into the effectiveness of FindMyApps showed that people with dementia who were offered this tool more frequently downloaded and used apps for self-management and meaningful activities than people who did not have access to this tool. This confirmed the usefulness of the tool. Therefore, a tool such as FindMyApps is recommended for people with dementia and their caregivers to ease the search for suitable apps.

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Consider offering Exergaming as meaningful activity in day care centres for people with dementia

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).

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Consider potential benefits in family carers when persons with dementia use technology

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).

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Take actions to alleviate carers’ involvement in eHealth research

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.

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Consider cost-effectiveness research into eHealth interventions

Guidance

Methodological sound effectiveness research into eHealth interventions for community dwelling persons with dementia is growing. To determine the added value of such interventions, it is important to look at their effects and costs. This gives a balanced picture and helps policy makers to make the right decisions when deploying eHealth interventions.

Explanation and example

Positive effects were found of exergaming compared to usual activities in day care centres. The provision of exergaming brought additional costs related to the equipment (purchase and maintenance) and staff involvement. Compared to non-technology based interventions, especially equipment costs can be a cost driver.

In the exergaming study, the participating organisations received a list of potential funders for the equipment to be used, and various funding organisations (charitable organizations) were willing to pay for it. In some cases this helped to participate in the study.

Taking into account the intervention costs may help day care centres to balance the positive effects of using the eHealth interventions (for people with dementia and their carers) against the long-term costs (to be covered by own funding or external funding). This will promote a well-informed implementation and securing of the eHealth intervention.

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