Best Practice Guidance
Human Interaction with Technology in Dementia

Guidance

During the development or use of technological devices, the individual needs of the person with cognitive impairments (e.g. dementia or MCI) and carer should be considered. This includes not only everyday technology, but also surveillance technology (ST) and technology used during cognitive training sessions. Increased awareness and offered assistance is recommended.

Explanation and Examples

People with dementia tend to face more and other difficulties than people with MCI when using relevant everyday technologies such as cash machines, calling or texting with a cell phone or using a DVD player, and thus need more assistance in technology use. This may also be the case with ST and technology used for cognitive training.

For example, ST are often presented as a neutral technology, which enables carers to minimise risk. However, the views of users have not been sought by ST developers, which limits the usefulness of ST and suggests the need for the empowerment of user groups. Therefore, a study of audience reception was undertaken through focus groups, online discussions (Netherlands) and PPI (UK). Hereby people with dementia could speak for themselves, which has allowed their needs to be compared with carers. There was no clear recognition that such needs differed between people with dementia and carers, and it has not previously been recognized that this leads to a mismatch between a user’s situation and the product design and how this plays out in the acceptance and use of ST. Although, carers and people with dementia have not yet reached an agreement on the privacy debate and on how the media should portray dementia, it is clear that carers often tamper with ST to make up for a lack in current designs. The results suggest that ST are being resold or rebranded by providers to use for dementia, whilst users may experience physical and cognitive barriers to using such technologies for safety reasons.

Regarding technology for cognitive training: As older people have little experience with technological devices, and so may experience problems, professionals involved in cognitive training should monitor training sessions from the outset. The professional must observe and ensure the ability of the older person to understand the instructions given through the technological device, so that the person can really benefit from the cognitive training by computer. For example, in sessions with GRADIOR, a cognitive rehabilitation program, there is always a professional in charge who helps older people to understand the exercises they may experience difficulty with.

Guidance

Technology developers should be aware that the challenge of using everyday information communication technologies can be high for older adults, including some people with dementia. They should use inclusive design that addresses cognitive useability to reduce the level of challenge so that more people with cognitive impairments can use ICTs.

Explanation and Examples

A standardized questionnaire investigated how 35 people living with dementia and 34 people with no known cognitive impairment in Sweden perceived their ability to use 90 ETs on a 5 step rating scale. This data was analysed (in a Rasch model) to produce a challenge measure for each of the 31 EICTs, showing how difficult or easy they were to use. Landline telephone was the easiest EICT to use. Scores for smartphone functions (make calls, receive calls, alarm, camera) were at the easier end of the challenge hierarchy and comparable to (or lower than) the challenge of the same functions on a push button mobile phone. These smartphone functions were less relevant to the group of people with dementia than the group without. Using a computer for the full range of functions (shopping, banking, email etc.) scored in the top half of the challenge of the hierarchy and using a tablet to search the web was most difficult. No other tablet functions (i.e. banking, email) could be scored since not enough people considered those functions relevant. Several smartphone functions (i.e. game, social media, transaction) could not be scored for the same reason

Guidance

When selecting technologies for use in public spaces, procurers should involve occupational therapists and designers with expertise in dementia, and people living with dementia.  Public space technologies should:

1. have the most cognitively enabling and inclusive design features (i.e. minimal steps and memory demands),
2. be sited in the most supportive physical location (i.e. secure vestibule, busy thoroughfare) and
3. identify and account for wider sociocultural preferences (i.e. continued face-to-face services).

Explanation and Examples

Life outside home in most countries increasingly demands the use of everyday technologies (ETs i.e. transport ticket and parking machines, ATMs, airline self-check in machines, fuel pumps). However, ETs can present challenges, particularly for people with dementia, and differences in design and location may mean some ETs are easier to use than others.

To investigate variation in the challenge of ETs; the Everyday Technology Use Questionnaire was administered with 315 people with and without dementia (73 in Sweden, 114 in the USA, 128 in England) in a cross-sectional, quantitative study. Modern statistical analysis found 5/16 public space ETs differed in challenge level between countries (specifically: ATM, airline self-check-in, bag drop, automatic ticket gates, fuel pump).

These differences result from variation in design features or siting of technologies. However, they may also be due to differing habits between users in different countries (i.e. necessity and frequency of use, preference for particular modes of transport, concerns about security, embarrassment) or varying progress towards technologised rather than face-to-face services (i.e. towards cashlessness).

Taking account of inter-country differences could lead to selecting the most useable technologies and services. This could improve inclusiveness of public space internationally for older adults with and without dementia.

Guidance

To improve usability design of the technology should be developed specifically on the characteristics of the person with dementia, with respect to vision, auditory and cognitive capacities.

Explanation and Examples

Dementia is mainly suffered by elderly people. It´s well known the visual and auditorily perception changes. Shapes, colours, glares, temporal frequency of stimuli, visual acuity, and relevant visual stimuli can be bad perceived. Therefore, the design of any technology should be focused and fitted to these perceptual changes. Consequently, it is important to increase the lighting of the context of the task, the level of contrast and font size.

Equally elderly people might suffer impaired hearing, especially in sensitivity to high frequencies, discrimination of tones and differentiation of the speech of the background noise. Therefore, it is necessary for any technology to increase the intensity of the stimuli, control the background noise, avoid stimuli with high frequencies and adapt the speed of the words.

The design of the technology should take into account the cognitive impairment of a person with dementia (type, level, and deficits associated with impairment). Technology for rehabilitation must comprise different difficulty levels, take slow processing speed into account by extending response intervals of exercises, and an increase the variety in types of exercises.

The degree of usability of a technology will influence the user´s experience, generating a degree of satisfaction in the person with dementia that will affect their level of motivation to continue using a rehabilitation program such as Gradior.

Guidance

End-users should be involved in the development of web-based advance care planning support tools to ensure their usability and usefulness for end-users. Furthermore, the content of web-based advance care planning tools should be substantiated by scientific evidence.

Explanation and Examples:

More and more web-based advance care planning support tools are publicly available on the internet. We conducted a systematic review of web-based interactive advance care planning support tools. We found numerous interactive web-based advance care planning support tools, varying in terms of their characteristics, functionalities, readability, quality of content, and level of evidence. Most tools were not co-developed with end users; were of low or medium quality; and, with a few exceptions, had not been evaluated in research. Tools should be evaluated through usability and effectiveness testing and should be substantiated with the most recent scientific literature.

Guidance

Policy-makers and developers of apps and websites, particularly those for people with cognitive impairment or dementia, should review and improve the cognitive accessibility of privacy policies associated with apps and websites. Privacy information should be available in the official language of each country in which the app or website is available. Navigation to information should be promoted by simple, attention-focusing user interface design. Length and linguistic complexity of information in the privacy policy should be limited, or the information should be summarized.

Explanation and Examples

Cognitive accessibility conceptualizes the extent to which digital services are simple, consistent, clear, multimodal, error-tolerant, and attention-focusing to use, taking into account all users.

Online data privacy is an important legal and ethical issue, and an important concern of many (potential) app-users, which may impact on their adoption of digital tools and services. The European General Data Protection Regulation (GDPR) protects people’s right to access information about how their data is processed, so that they can make informed choices, but there are concerns that many privacy policies are too long, too complex and sometimes not even available. This may reduce trust in digital tools, presenting a barrier to adoption.

A cross-sectional study found that, in the Netherlands, Sweden and the UK:

• Most health and wellness apps sampled outside the UK did not have a privacy policy available in the official language of the user’s country
• Almost no privacy policies met reading level benchmarks, meaning the language was too complex for the average native speaker to understand.
• The time that it would take the average adult native speaker to read each privacy policy was 10 minutes (websites) to 12 minutes (apps).

Recommendations to improve the cognitive accessibility of online privacy information have been made. An example of a privacy policy designed largely in line with these recommendations is the privacy policy of the FindMyApps project, which can be found on the project website: https://findmyapps.onderzoek.io/cognitively-accessible-privacy-information

Guidance

Technological interventions aiming to promote social participation among older adults (with and without dementia) should incorporate a social interaction element.

Explanation and Examples

The number of people with dementia who live in the community and are socially isolated is growing. Social isolation can negatively affect health and well-being. Therefore, psychosocial interventions are needed to promote the social participation of people with dementia living in the community. A systematic literature review was conducted to explore the effects of technological interventions on the social participation of older adults with and without dementia. Findings from 36 studies suggest that technological interventions that include a social interaction element (e.g. face-to-face contact, phone calls, text messages) are successful in promoting social participation among older adults. Examples are group interventions that provide regular interactions within a group, or interventions that enable to connect and communicate with other people (e.g. family, friends, or other older adults).

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

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

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

See recommendation no. 3.2.5.1

Guidance

Technology companies and developers should involve more diverse groups of people living with dementia or caring for people with dementia, in all stages of design, development and implementation of technologies. They should also consider existing contexts before introducing them.

Explanation and Examples

Consultations explored the ways in which Everyday Technology can be both an enabler and disabler, among people living with dementia, or providing care for people with dementia, from minority and migrant communities within the EU (Germany and Greece). The consultations highlighted the need for more contextually-relevant Everyday Technologies. This includes consideration of existing contexts before introducing technologies or technology interventions e.g. eHealth, finance or social apps. Consultees reported the need to identify existing levels of access and ability to use Everyday Technologies (e.g. possession of technological devices and digital literacy etc.) as well as access to infrastructures to support their use (e.g. internet connection, battery charging facilities and face-to-face support). Everyday Technology use is influenced by contextual and cultural factors. Technology companies and developers need to involve a more diverse group of people living with dementia or caring for people with dementia (e.g. from different cultural and socio-economic backgrounds, urban and rural environments etc.) throughout all stages of technology development.

Guidance

Ensure new technology is compatible with a range of relevant platforms to promote implementation.

Explanation and examples

Findings from the feasibility trial showed that people with dementia use a range of devices with various software versions (e.g. smartphones, touch-screen tablets, and personal computers) to access apps and other services. New technology which aims to be compatible with these different devices, can lead to increased uptake and may contribute to successful implementation.

Guidance

The level of cognitive impairment must be taken into account in the design of technology because people with severe dementia have different needs vs. mild dementia.

Explanation and Example

People with severe cognitive impairment will have more problems learning to use different and new devices. They need more explanation and a longer learning time, due to limited cognitive capacities. For example, the clinical experience with Gradior shows that people with moderate and severe dementia should have the therapist as a permanent guide. According to this, Gradior possibly would have to adopt new systems and tools to become effective in people with moderate and severe dementia, and in turn, allow a level of autonomy of the person with dementia who uses this technology. Indeed, the help of a therapist in the first steps of applying a technological-based therapy is strategic for implementing and accepting the approach.

Guidance

Researchers and technology developers should be aware of the mutual influence care recipients and caregivers have on each other, and the importance of maintaining and improving caregiving relationships. Therefore they should adopt a dyadic approach to the development, implementation and evaluation of technology-driven interventions by involving both members of the dyad.

Explanation and examples

A mixed-methods feasibility study investigated the impact of a tablet-based activation system on nine community-dwelling caregiving dyads living with dementia, their motivations to use social technology together, and facilitating and impeding factors in the independent use of social technology at home. In light of the SARS-CoV-2 pandemic, it was clear that the extent to which the caregiving dyads were influenced by the extreme social isolation depended on how socially active they were before the pandemic, and their familiarity with social technology. The dyads’ motivations for welcoming technology in their social interactions ranged from trying something new together, keeping up with society to communication support.

Identified facilitators and barriers revealed that user capabilities (care recipients’ cognitive capacities and caregivers’ energy to support their loved ones); user willingness (technology interest) and sufficient support (proactive, continuous and in-person) are three crucial elements in using social technology independently at home.

These contextual factors should be approached from a dyadic perspective taking into account the needs and preferences of both members of the dyad. Technology promoting social participation cannot be developed for people living with dementia without taking into account the needs of their caregivers, and vice versa.