Best Practice Guidance
Human Interaction with Technology in Dementia

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

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.

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).

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

Guidance

People with dementia are active on social media platforms. For this reason, researchers recruiting participants for their studies on the development, testing or evaluation of psychosocial technological interventions should consider advertising the study details on different social media platforms.

Explanation and Examples:

Devices using information and communication technology (ICT) are increasingly being used by older people, including people with dementia. We conducted an online survey with 143 people with dementia to explore if and how they use social media. Results from the survey revealed that more than half of the participants actively use social media. More people with young-onset dementia were active on social media, though a large proportion of people with dementia who were 65 years and older were actively using social media too. In addition, a large proportion of the participants themselves were recruited through Twitter and Facebook. Our results suggest that people with dementia can be reached through social media, which is of relevance for researchers looking to recruit participants for the development, testing or evaluation of psychosocial technological interventions.

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

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.

Guidance

See recommendation no. 3.2.5.1

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.

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.

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.

Guidance

Low-cost pet robots demonstrate the potential to positively impact the psychosocial health of people with dementia and their caregivers. Due to their lower cost, they may be more accessible and affordable and should therefore be considered for use in dementia care.

Explanation and examples

Although pet robots have demonstrated positive impacts on the wellbeing of people with dementia, their affordability can impede their uptake in dementia care. A scoping review, content analysis of consumer reviews and a qualitative study showed that the impacts of low-cost pet robots on people with dementia resembled the effects of other higher costed (but more advanced) pet robots. These included improved mood, companionship, increased activity engagement and reduced anxiety. Caregivers also experienced knock-on effects, such as feelings of joy and relief. Low-cost pet robots are more widely accessible to the public since they can be purchased off-the-shelf. While promising, findings of their positive impacts are subject to bias. More rigorous studies are necessary to confirm their impacts.

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.