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 in everyday life

Ecological validity contributes to the effectiveness of a technology

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.

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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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Health care technologies

The need for more high-quality research into development, implementation and evaluation of complex health technologies

Guidance

Better research using high-quality study designs is needed to develop, implement and evaluate complex palliative care interventions (targeting whole-system change) for people with dementia living and dying at home.

Explanation

Our systematic review found that the existing evidence base remains insufficient and is generally too weak to robustly assess the effects of palliative care interventions for people with dementia living at home.

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Call for research on online training programs for carers’ mechanisms of change to increase the quality of online training for families of people with dementia

Guidance

Evaluations of the effectiveness of internet training programs should explore mechanisms of change and aspects of the intervention design, such as reliability, the type of device used and modality of the intervention.

Explanation and example

The systematic review (Egan et al 2018) of internet training support for familiy carers lacks detail about potential factors which may influence the effectiveness of online programs (i.e. type of connectivity, development of the intervention, usability, etc.). The quality of individual studies selected for the systematic review was limited as more than 50% of the studies showed incomplete data reporting, and 25% showed a selective reporting of outcomes according to the risk of bias assessment performed making the generalization of the results difficult. However, the systematic review reported improvements on carer’s mental health outcomes by internet training.

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Further implementation of effective Internet-based carer training programmes recommended

Guidance

Internet training programmes for family carers have potential to increase carers’ well-being, to reduce distress, depression and anxiety symptoms and to increase knowledge skills.

Explanation and example

A systematic review (Egan et al. 2018) about online training programmes for family carers reported on two studies in which improvements in depression symptoms were demonstrated, two studies with overall improvements in anxiety and two studies showing reduction of stress symptoms. Good examples of informative websites and internet training programmes for family carers are ‘Mastery over Dementia’, iSupport, ‘iCARE: Stress management eTraining programme’ and the STAR E-Learning course.

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Call for research on moderators of online training programs for carers’ of people with dementia

Guidance

Analyses of the moderation effect of demographic characteristic of the carers and other characteristics of the person with dementia on the internet training programs outcomes should be encouraged.

Explanation and example

Several studies have been done to find moderators of effects of online training programs for carers of people with dementia. Some studies have demonstrated that some programs were more effective for certain subgroups of carers. However, in our analyses we could not replicate these findings. Our analyses on the effect of age, gender, level of education, relationship with the person with dementia, functional status of the person with dementia and frequency of appearance of challenging behaviour suggests that the program is equally effective for all the subgroups analysed. More research is needed before we have definitive answers. A better understanding of moderators of carers’ training programs could lead to better tailoring of programs based on the specific characteristic of the carer.

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Consider the factors that potentially determine adherence to a computer-based cognitive rehabilitation program to generate corresponding adaptations

Guidance

When evaluating adherence of people with dementia to a computer-based cognitive rehabilitation program, sociodemographic, cognitive, and psychological factors should be taken into account.

Explanation and example

When we consider evaluating the adherence of people with dementia to a computer-based program for cognitive rehabilitation, it is important to consider sociodemographic (age, sex, educational level), cognitive (memory, attention, executive function) and psychological factors (level of motivation, expectations, previous computer use).

For this purpose, a periodic evaluation will help to evaluate these factors and their relation to the amount and the time that a person spends in using a computer program for cognitive rehabilitation. In this way, significant modifications could be made to the program, so that the program meets the needs of people with dementia.

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Social Health Domain 2: Manage ones own life and promote independence

Technologies designed to improve social health in people with dementia should be evaluated in high quality studies to effectively support decision-making

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.

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Social Health Domain 3: Technology to promote social participation

Standardised instruments for measuring social interactions and communication in dementia caregiving must be developed to ensure rigorous research into the effect of technology solutions that aim to support this

Guidance

The academic community should dedicate more resources to develop and evaluate technology-driven solutions that support dyadic communication and foster social interactions in dementia caregiving dyads. Rigorous investigation is needed using standard, comparable measurements to demonstrate the effects of these technological solutions.

Explanation and examples

A systematic literature search was conducted to comprehensively describe technology-driven interventions to prompt communication and facilitate positive social interactions between people with dementia and their conversation partners. Titles and abstracts from three databases PubMed, CINAHL and PsycINFO, were independently screened by two researchers. Quality of the included studies was assessed using the Mixed Methods Appraisal Tool. Of the 18 papers included in the review, the technology most commonly used to facilitate social interaction were tablet-computers (n=7), social robots (n=5), and personal computers (n=4). Technology-driven devices not fitting into the three other categories were labelled as ‘other’ (n = 2). Results showed that the social technology helped: i) breaking the ice by initiating dialogue and serving as a conversational platform; ii) increase interaction frequency and duration by encouraging more involvement between the conversation partners; iii) better understand the person with dementia through reminiscence activities; and iv) reduce pressure on the conversation partner by making the communication more reciprocal. Although there is seemingly great potential in technology to facilitate social interaction and communication in dementia caregiving, the findings show that research in this area is still in an explorative phase. The diversity in study methodologies and few standardised instruments used to measure these outcomes point to a need for further research into development and validation of new assessment tools for positive outcomes in social health.

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Measure different dimensions of social participation when evaluating the effect of social technologies

Guidance

Make clear how you define the outcome of social participation and assess different dimensions of this multidimensional concept when evaluating the effects of social technology on social participation.

Explanation and examples

A systematic review was conducted to gain insight into the effects of technological interventions on the social participation of older adults. A total of 36 studies was included in a narrative synthesis. A major finding was the inconsistent use of terms and concepts related to social participation among studies. Future studies should make the applied definition of social participation explicit to allow for comparison of research results.

Furthermore, a majority of the included studies measured one specific dimension of social participation, i.e: social connections (e.g. by measuring loneliness or social isolation). However, social participation is a multidimensional concept. It is not only about social connections, but also about being engaged in meaningful activities that provide social interaction with others in the community (Levasseur et al., 2010). So far, there is no outcome measure that covers all dimensions of social participation. Therefore, it is recommended to combine quantitative outcome measures with qualitative data collection methods when assessing the effect(s) of technology on social participation. In the future, research should focus on developing and validating an outcome measure that covers different dimensions of social participation.

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More studies required to investigate the impacts of low-cost pet robots in dementia care

Guidance

Low-cost pet robots are a promising technology to improve the psychosocial health of people living with dementia. More high quality studies with sufficiently large sample sizes should be conducted to properly investigate their impacts.

Explanation and examples

Pet robots are a technology-based substitute to animal assisted therapy. However, the high costs of many pet robots can hinder the use of pet robots in dementia care. A scoping review was conducted to understand the impact of using lower-cost (more affordable) pet robots. Synthesised findings from nine studies suggested that low-cost pet robots improved the communication, social interactions and other health domains of older adults and people living with dementia. However, most studies had a small sample size and were of varying quality. Moving forward, more rigorous studies are necessary to investigate their impacts.

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